As Above, So Below.

6 months out.

2016-01-30T17:02:00.000-06:00

It has been 6 months since the death of my oldest. 6 months of crying and questions. 6 months.

I remember when he was 6 months old. Now I have to go through the milestone of 6 months after his death.

I think of all the things I want to say to him. How sorry I am that I got sick when he was young. How sorry I am that I passed it on to him. How sorry I am that I chose that man for his father and that he inherited his illness too. How sorry I am that I couldn't be a better mother. I spend hours thinking of all the ways I let him down. Then I start to remember good stuff, happy memories, loving times. I remember how beautiful he was when he was born, how cute he was learning to crawl, and how big and bright his eyes were when he was smiling. I remember holding him, rocking him, singing to him. I remember taking him to the park, chasing him, and listening to him squeal in delight. Pushing him on the swings, teaching him to ride a bike. I remember that he and I would talk all the way to daycare, a 30 to 45 min drive, with no radio on. He would always ask me to go faster and race the other cars and I would make racing sounds. He was so happy.

I remember when that changed. Looking back I can see when he started acting different. I thought it was just adolescence but now I can see the mental health issue, the schizophrenia. He never did tell me about it. I can see how he was pulling away from me. I thought it was because I had remarried and had more kids, but if I look carefully I can see when he was fully there and when he wasn't. Still I got him out and we went places. Camping, museums, caves, concerts, hikes, swimming, yoga class, Tae Kwon Do class. I tried to be there as fully as I could even though I was disabled from my illness. I have to hold on to the good memories or I will drown in my regrets.

I need to keep fighting my illness. I need to give the other kids the same amount of memories, take the same amount of places, love them just as fiercely. No matter how badly I want to give up, I can't. I have to keep going, keep fighting for the kids I still have.

I need to remind myself that his death wasn't my fault. It is not my fault he has paranoid schizophrenia, or that he inherited my HEDS and stuff. I know more was going on but that wasn't my fault either. I tried to help him and I know he appreciate it and loved me because that is what he said to me in the message he left for me. He wanted me to know I had been a great mom to him and that his last wish for me was that I "go on with happy memories of our time together". I have to hold on to that. I have to.

Disabling Anxiety

2015-12-21T09:00:00.002-06:00

I always knew I had anxiety. It was one of the first things I was diagnosed with. OCD, PTSD, social anxiety, agoraphobia, pain avoidance, generalized anxiety disorder, complex anxiety disorder, etc, etc. I have been given all these labels. On top of that, I have Dysautonomia. That also gives a physical cause to anxiety. What I didn't realize was how bad my anxiety controlled my life. The constant irritability? The constant anger? Anxiety.

Previous attempts to treat my anxiety failed. The meds made me feel funny, made the fatigue worse, made me sleep all day, made me feel hung over the next day, or made me gain a lot of weight making my hips hurt worse. Why is this attempt working? Because I treated the Orthostatic hypotension first. I started taking the Fludrocortisone first. So now my blood flow is right. That right there lowered my anxiety and reduced the anger, but it wasn't enough. I was still an asshole.

It is an unbearable thing, watching your personality change against your will. Becoming someone you never were and never wanted to be. Watching all your dreams and hopes go down the drain as you change into someone evil and disgusting. It makes me wonder how many people out there have these issues but are brushed off as just being jerks. Or how many parents are angry and violent when it was something they couldn't control? Of all the help I have received over the years, not one doctor or government agency looked for a physical issue. I get angry sometimes, thinking about all the hell my oldest and I went through when I first became disabled, knowing that this was the issue all along. If they had know or seen and treated me accordingly, could I have gone back to work? Could I have gone back to the happy mother he had had before? Would he still be alive?

I have to remind myself that I , and my kids, are a genetic anomaly. This isn't something a regular doctor is going to see or suspect. How could they know? Only 1 in 5,000 people have EDS. Fewer than that have Dysautonomia. The more I learn about myself the more I realize what a genetic fuck up I am. I have an aberrant right subclavian artery. .2 percent of people have this and most of them have down syndrome. I have red hair and blue eyes. A combo only seen in 2 percent or less of the population. I have fructose malabsorption syndrome. They actually think that 30% of the population has this. There are other things but these facts alone make me realize just what had to come together to make me so unique. And so tortured.

The constant pain is still there. Anything they could give me to treat it would make my digestion worse. I don't want to develop gastroparesis like my mom so I'll hold off. For now, treating the anxiety has made a huge difference. Buspar and Xanax 3 times a day. That is what is finally doing it. Do you know what it took to get a doctor to give me those meds? Sheesh.

3 months out. The Universe sends me lessons on forgiving myself.

2015-11-08T15:11:00.001-06:00

I always feel guilty going to church, mostly because my son had asked for me to take him with me a few months before his suicide. I had told him I was taking a break for the summer because of all the drama that had been going on. I had told him that I would be going back to teach RE classes and I would be happy to pick him up then. They starter up less than a month after he died.

I feel guilty and I blame myself every day for not having done more, for not having seen more, realized more, been more. I blame my illness for the way it affects my brain and my energy. What it took away from me as a person and a mother and I get drug down into all the negative things that happened his entire life. I forget all the good things that happened. I forget about all the medical issues he had that led to this that I was unaware of. It is so easy to get sucked down into the everything that I did wrong. Because he is gone. He is dead. He was my son, a part of me, my blood, my bone, a piece of my soul and I didn't do everything I needed to in order to keep him alive. Looking back I can see everything I missed and failed to do. At the time, though, I couldn't see. I couldn't see what was really going on. Was I in shock? I don't know. I don't feel like I know anything anymore.

I kept my promise to keep teaching RE at the UU church. I have been doing so for maybe 5 years. It is the way I contribute to the church since I can't give money or anything else. My children need the program. My son attended quite a few programs there and "bridged" out of RE. I am convinced that it helped him be a better person.

I still feel guilty every time I pull up in front of the church. He had just moved to that side of town 4 months before his death. Every time I drive to church I pass the building he worked at and I know that while I am at church I am only a few blocks from where he had been living and where he took his own life. Over and over again, my mind circles through guilt and blame. I am here and he is gone. Forever. I have to learn how to live the rest of my life without him. I have to learn ow to laugh again and feel joy again. Not for my sake but for my other children's sake. They need to live.

And so I found myself at church today, teaching class. I hadn't read the lesson before hand. I never do. It was about forgiveness.

This part was the biggest thing to me and I almost started crying. I could not get too far through this for the kids but I did not break down in front of them.

"From the website A View on Buddhism .

Give children a moment each time you ask them to picture someone new.

Read aloud the words you want children to say silently to themselves one phrase at a time, with pauses in between.

Picture yourself in your mind. As you breathe in and out, repeat these words silently to yourself:

I forgive myself for whatever I did, on purpose or by accident.

May I be happy, free of confusion, understand myself and the world.

May I help others to be happy, free of confusion, and full of understanding.

Now picture in your mind a person you love and want to forgive.

As you breathe in and out, repeat these words silently to yourself:

From my heart, I forgive you for whatever you did, on purpose or by accident.

May you be happy, free of confusion, and understand yourself and the world.

Please forgive me for whatever I did to you, on purpose or by accident.

May we open our hearts and minds to meet in love and understanding.

Try to feel the warmth of the healing between you.

Now picture in your mind someone you have hurt.

As you breathe in and out, repeat these words silently to yourself:

Please forgive me for whatever I did to you, on purpose or by accident.

May you be happy, free of confusion, and understand yourself and the world.

Please forgive me for whatever I did to you, on purpose or by accident.

May we open our hearts and minds to meet in love and understanding.

Try to feel the warmth of the healing between you.

Now picture in your mind a person you do not like very much.

As you breathe in and out, repeat these words silently to yourself:

Please forgive me for whatever I did to you, on purpose or by accident.

May you be happy, free of confusion, and understand yourself and the world.

Please forgive me for whatever I did to you, on purpose or by accident.

May we open our hearts and minds to meet in love and understanding.

Try to feel the warmth of the healing between you."

I need to keep this in my mind.

Trigger Warning My Son's Suicide.

2015-09-05T12:54:00.000-05:00

I don't even know what to title this or how to start. I guess I could just state the obvious.

My son is dead.

My oldest child, my firstborn, died of suicide July 23rd, 2015.

I ask myself why every day. I have the note he left behind that said why. I have a voice recording he made for me saying why. I know what tests he had done lately and what the results were. I know what diagnoses he had. I know what had been happening in his life lately. I know the struggles he faced for the rest of his life. I know the symptoms he had told me he had been having lately. I still don't understand why. Even though I have faced that demon myself, I still don't understand why he is gone. I can tell myself the answers over and over again. I can tell myself his answers over and over again. I still can't grasp in my mind why my child killed himself.

Why is my child dead? Would it be easier if it had been an accident? Would it be easier if he hadn't caused it himself? Does it make it easier knowing he didn't do it in a violent manner but rather made it peaceful and easy? Does it make it easier having the note and the recording? No. None of this is easy.

Does any parent get over the death of their child? Does anyone ever get over the suicide of their child?

I can see the signs now, They were there. I can see all the times I should have done more, reached out more, been there more. I can also see how I did every thing right and everything wrong at the same time. Will I ever stop blaming myself? I don't think so.

I went through his phone. He told a few people that he had planned to do it that day and none of them tried to message me or anyone else on his friends list. It feels like we all just let him die. My therapist and several other mental health professionals assures me that once someone makes up their mind to do it that it is very unlikely someone can stop them. That sounds false to me right now.

I know the real reason he did it. I can see the signs of what was happening. I can tell you that it was something he inherited from his biological father and something he couldn't have stopped. I can tell you he would have just gotten worse and suffered greatly, not just from that, but also from the chronic pain and fatigue he got from the EDS. I can tell you that their are days I wish I would have died in my sleep and it pains me that my children will feel like this someday. I can tell you that he was facing the EDS struggle bravely, going to appointments with me and looking for help. I can tell you that he was having problems with his brain and I was trying to get a doctor to take it seriously and order an MRI. I can tell you that I was in denial about seeing the signs that he was also developing Paranoid Schizophrenia. That is what he got from his biological father. I have been told that the other problems in his brain that we were trying to get help for could have caused it to get worse. I have been told that Paranoid Schizophrenics have a high rate of suicide ideation and that the more intelligent they are the higher the rate of completion. I was in serious denial about seeing the signs of it. I wrote it off as him being emotional, easily angered, irritable, or chalking it up to his Oppositional Defiant Disorder or his Attention Deficit Disorder. Later when he was older, I thought it was just caused by the issues with his brain we were trying to get diagnosed.

When he was 15 he realized he couldn't see color anymore. He could only see in shades of grey. I took him to the optometrist and then the ophthalmologist who assured me his eyes, rods, cones, and retinas were fine. They didn't want to look into it further. Five years later when he started getting double vision in one eye and developed low testosterone, I took him back to the doctor. We went to an endocrinologist and a special ophthalmologist to look for answers. They did tests. I have not gotten the endocrinologists results back. We were supposed to go back to a more special ophthalmologist next Tuesday. We were going to request an MRI and find out why he was having these issues. Now I will never know what had been going on in there. I will never know if medication could have helped him live a normal life. I will never know anything. I couldn't help him. He didn't wait for help. He didn't go to the ER for help. He didn't call me for help.

The last time he came to visit he told me that he had blacked out and started having seizures. He told me he had gone to the ER and gotten an MRI and that he had a tumor. Then he wanted to talk about his funeral arrangements and tell me he had written a will. I though he was just scared. It isn't unusual for someone with a chronic illness to want to tell someone these things. He told me he wanted to die and I saw marks on his wrist. Instead of taking him to the hospital, I talked to him about my own struggles with depression and thoughts of suicide. I told him how it was better to hang on and keep going to the doctor. I told him to go back to the therapist and tell them how he really felt. I begged him to let me go to doctors appointments with him. I begged him to move back home. He said "I'm an an adult, I can handle it on my own."

I texted him every day after that. I asked him if he was okay, if he needed help, if he needed to go to the hospital, if he needed me for anything. He always said he was fine. Every day I texted him. Sometimes I just sent him funny texts. Once I threatened to sing him lullabies. He joked back, reassuring me.

That Tuesday I had an urge to take the other kids to the beach. I never just do spur of the moment things, let alone have them be my idea. But that day I packed the kids up and went. I spent all day laying in the sun getting a nasty sunburn. The sun had felt so good, the breeze so peaceful, the kids played so nicely. and I wasn't worried. It felt surreal after having been constantly worried for 2 weeks. He had posted a poem on facebook that day and I had commented on it. It was a well written poem. he had commented back. The next morning I woke up with a real bad sunburn. Most of my body was red and angry. I was dehydrated and I couldn't stand or sit up without getting really dizzy. I almost passed out trying to get my own Gatorade out of the fridge. My 8 year old brought it to me while I laid on the couch all day. My head was swimming and I could barely function. I didn't text him at all that day. I didn't even play games or look at facebook that day. That was the day he had planned to do it. He had an episode and yelled at his ex-fiance at his work. He went to Taco Bell and bought lunch. He went to a party store and rented a helium tank. After his ex-fiance got off work, he took her to dinner and told her how pretty she was. They had a nice time. They went back to the house they were room mates in. His internet history showed he spent time watching you tube videos. Then he went out in the back yard and made the voice recordings, one for me and one for her. He tells us both it is because of the "evil" inside him that he got from his biological father. He tells her he is glad she has found love with someone else already. He tells me I was a wonderful mother, the best he could have asked for and it's not my fault. He saved them close to 11pm. A bit later he makes a 20 sec one for her saying good-bye and sets it to send by text the next morning at 9am. That was at 15 min till midnight. He had left a message to a friend saying he planned to do it at midnight. I can only assume that is what happened. His death is recorded as happening Thur morning. He was dead for 9 hours before his text was sent. She immediately went to his room and found him. He made sure no one would stop him. He lied and hid everything to make sure no one would stop him.

Does it make me feel better writing this out for the world to see? Maybe. You can't hold this in. You can't go on with life without talking about it, talking about him. I can't go on with life without facing this every day, without knowing how his last days went. I went through everything he had, notebooks, his phone, his computer, all his facebook messages to people, his texts to people, everything. All of it helps me to feel the reality of it all, to know what he was going through and how he felt. I plan to face this head on. I need to face this head on so that I can parent the rest of my kids and help them through the death of their older brother. I need to do this right.

They say that there are stages of grief. I feel like I cycle through them constantly. The anger, the blame and guilt, the acceptance, the bargaining. It is over and over again all day, every day. From the moment I wake up until the moment I finally fall asleep, I think about it, him. My dreams are either of him or random nightmares. Every thing my other kids do or say reminds me of him and things he did or said when he was their age. His pictures are everywhere and the flowers wilted long ago.

He was cremated because that is what he wanted. His ashes sit in an urn on top of my bookcase. I cant part with them to bury them. I can't part with any of his things. I don't know if I ever will.

Mildly Allergic to Everything

2015-07-12T11:36:00.001-05:00

I am pretty sure I knew this but it still surprises me anyway. When I was a kid I had hay fever, sneezed until I peed my pants when I mowed the yard, got an itchy rash if I let the dishwater run down my forearms, got hives from bug killing spray, and got a little itchy from hugging dogs. That was it and the dog thing didn't even start until I was in puberty. Before that I could cuddle the family dog just fine. Over the years I noticed I was getting more sensitive to things. The itching from dogs got a little worse, I couldn't mow the lawn anymore, my hay fever became unreal, and dust starting bothering me. I developed mild asthma. I was used to taking antihistamines during allergy season and having to blow my nose often when going through hand-me-downs.

It all stayed at a manageable level. I didn't need to take allergy meds often. I only needed my inhaler once or twice a year. I made sure to not pet dogs, wash my hands often, and not touch my face. I didn't notice at first, but it was gradually worsening. It was happening over the same time period that my personality was changing, that my fatigue was worsening, and that my dysautonomia was taking a downturn. It is all connected but I am not sure how. I started getting hives for, what seemed like, no reason. Dust was making me need my inhaler. I had to go bug the docs for a new script. Scratches and pressure from my clothes left itchy red marks. My entire body itched all the time, especially my scalp. I though I had scalp psoriasis, at least that is what a dermatologist told me. The hives were bigger, redder, and way itchier. I figured it was time for a check up with the allergist.

The last appointment with an allergist yielded a huge skin prick test that tested for everything seasonal. Everything came back positive. All the kinds of trees, all the kinds of grasses, all the animals they test for, dust, dust mites, mildew, mold, cockroaches and their poop, and a few other things I forgot. I was told to take an OTC antihistamine if I had a problem. So I already knew I had allergy problems but they weren't severe. I got tired of being itchy though.

This time I knew I had HEDS and FMS. I knew going in that MCAS was common with HEDS. I specifically asked for a doctor who knew about all 3 conditions. I wasn't disappointed. He was very knowledgeable about all of it. He checked me over, reviewed my previous hormone and tryptase level checks, and asked the right questions. He said I have "sensitive skin". I was confused for a minute. It didn't sound like a medical term. Then he said that I have urticaria, dermatographism, allergy induced asthma, and eczema. Apparently I don't have scalp psoriasis. The allergies make my head itch, scratching my head gave me hives, my HEDS made it easy to cut myself while scratching, the wounds wouldn't heal, bacteria got in there, and made a huge incurable circle.

I was told to take 180 mg of allegra twice a day, use my inhaler more frequently even if it just seems like it's not too bad, and if my hives or symptoms ever get so bad I need to go to the hospital, I am to give them the paper requesting a tryptase level.

That last part told me that he suspects Mast Cell Activation Syndrome. This is different from Mast Cell Activation Disorder. MCAD is where you have a larger than normal amount of mast cells and they are pump out histamine and other stuff at a moments notice or continuously. MCAS is the same thing only with a normal amount of mast cells and they might be less zealous about overreacting. Was I diagnosed with this? No. That's why the doctor asked for a tryptase level if my symptoms become way worse. http://www.ncbi.nlm.nih.gov/pubmed/23179866

As for my scalp, the antihistamines should reduce the itching and the hives. Then all I need is to let the skin heal. My scalp is a hundred times better already and I have only been taking them for a week. It is amazing. I thought my scalp would never get better. It is an amazing thing.

I still get hives from bug bites, but I don't get them from cuddling my cat anymore. I can cuddle and pet my dog. I can have all my windows open no matter what is blooming, pollinating, or whatever outside. My fibro pain is less and I feel more like myself. I am loving this change I am seeing in myself.

I have one more specialist planned, a rheumatologist. I plan to ask about my knees and stuff. I would like to be able to do stairs ad hiking hills without pain or fear of strains and sprains.

The Perfect Storm

2015-05-11T11:50:00.000-05:00

Recipe for Misery.

1. The day before I start my period and the first day of the cycle. Hormones. This part of the cycle always comes with greater fatigue and looser joints. When I walk I can feel how much more wobbly my knees are. I can feel how my ankles are rolling in. All of my joints feel sore my bones ache. I can feel the tender points in my muscles acting up. I hate stuff touching my skin.

2. Rainy weather. It makes my bones hurt too. I am sure I have some kind of arthritis. It could just be the EDS though. All I know is that I can feel the storm building. I can feel it in my bones. It aches inside my joints.

3. More activity. I have drinking large amounts of caffeine lately in an effort to overcome the fatigue. It helps with the fatigue. I have been doing all kinds of stuff. It felt great. However, I forgot to take a rest day. Now all my muscles are on fire. Today it is mostly my shoulder and upper arm muscles. It is not the type of pain you get from working out, where you can tell your muscles are going to get stronger from it. It is the make you cry kind of pain. It makes me a lump of burning, crying, pain.

I have been rubbing this all natural icy hot stuff i found into every sore muscle and joint. I am almost out because that is all of them. I am miserable. I wish I could just stay in bed all day. I am trying to move as little as possible. Through all this I still have the headache.

At least I don't feel uncontrollably dizzy.

A Happy Family

2015-05-11T10:32:00.003-05:00

I have a whole house full of people with issues. Me and the 3 younger kids have HEDS and all that entails ( Dysautonomia, gastrointestinal issues, low level allergies to everything, food intolerances, chronic pain and fatigue, etc.), my step-daughter has POTS (postural orthostatic tachycardia syndrome), and I don't know what is exactly my husband's problem and he seems to have an allergy to doctor offices.

Our biggest problem was that everybody was cranky. We were all cranky, irritable, complaining, and in pain. We seemed to have no control over our outbursts. The children and I would have frequent outbursts of rage, crying, or other unpleasantness. This was a very unhappy house where everybody was miserable. There was talk of divorce and Child Protective Services was called on me. Don't worry though, they found no reason to do anything. They said there was nothing about my house or way I was raising my kids to be worried about. I was worried about how my family was, I knew that nothing was right in my house, but apparently my standards are higher than CPS's. All they did was visit me a few times to see how things were. I remember, in the midst of telling them my whole life story and how I needed help, crying about the pain. This was after I had spent 2 months trialing Wellbutrin for the depression and fatigue. That did not go well. I remember telling the worker about how I had tried it, how it had made the pain worse, and how it had made me suicidal and I had thrown it away. I told them all about the doctors and my psychiatrist and the stuff I had tried. They were supportive and assuring. They had no more answers for me than the doctors did at that point.

I was determined. My daughters and I did a "Happy Family" spell together. I was hoping that the picture they drew and the words we said would help them keep it in their mind what we wanted to accomplish. Maybe seeing the picture would remind them everyday to try the hardest to be kind to each other. It was a start. I kept going to doctors. Finally, after a bad infection cased me to have a permanent change for the worse, I got diagnosed with Neurally Mediated Hypotension, a form of dysautonomia. I wasn't getting enough blood to my brain anytime I was anything other than flat on my back. Medicating that with Fludrocortisone was a turning point, an answer to our prayers, and a sign that our spell was working.

I realized, right away, that I had been missing some very crucial parts of my personality. Things came flooding back, like compassion, love, tenderness, patience, empathy, and joy. Things I had had a long time ago that had drifted away. I was too sick, too dizzy and fatigued, too out of it to notice. I had become a different person, a real change in personality. My husband had been telling me for years that I wasn't the same person anymore. Now I see just how much I had changed.

It wasn't long before I started researching more about dysautonomia. I needed more help. I needed my energy back, I needed more. Just more. I still wasn't completely back to my old self. I suppose I never will be. I have to continuously monitor myself and make sure I am keeping my hydration, diuretics, antihistamines, vitamins, electrolytes balanced at all times. I started making more appointments with more doctors. In the meantime I knew I could help my oldest biological daughter with her problem. It had to be the same as mine, EDS runs true to family. I took her to her cardiologist and told her what I was diagnosed with, what I was taking for it, how it made me feel, and what symptoms and emotions my daughter was showing. She had a lot of experience to pediatric EDS patients and was happy to look her over. After an exam and talking to her, she decided to give her the same med I was taking. She agreed that with the EDS that my daughter was likely to be having the same issues that I was having.

The medicine changed her. She became happier and more energetic. She was more cooperative. The most amazing thing was seeing her get her joy back. The change I have seen in her proves I was right about why she was having so many emotional outbursts. Her schoolwork improved. She was paying attention in class and finishing art projects. She was even doing her chores without much whining. She was going around telling everyone how much she loved them!

My step-daughter always had migraines. They had her on imipramine. It wasn't getting rid of her constant headache. I always encouraged her to tell me about all her symptoms because I wanted to make sure she had the right help. All this studying I was doing about dysautonomia led to believe that she had it as well. She fainted when standing up too fast, had a headache all the time, was always angry and depressed, and was very moody and cried easily. I had written all of the kids behavior off as a reaction to my own, but it wasn't. Only half of it was because of me, the other half was there own issues. I took this info and went to the neurologist who was handling her migraines. I told them what I thought. The neurologist tested her right then and there. he laid her down and took her blood pressure and heart rate, had her sit up and did it again, had her stand up and did it again, then had her stand for 3 and 5 min and did it again. Bingo. POTS. She had drops in blood pressure that came back up with a huge jump in heart rate that stayed raised the whole time. At first they tried her on a drug to lower her heart rate. It helped with the anxiety but not with the headache or mood stuff. It actually made her more depressed, more tired, more angry, and she had more trouble with schoolwork. She gave the med a good months try, but it wasn't getting better. I called and had them try something else. They gave her midodrine. It is supposed to help the blood vessels stay tight to help the blood get to her brain. That was huge. Her headaches disappeared. That helped her mood. She felt more confident, smart, happy, and she quit passing out. This was huge. Her anger came down, her patience went up, and she was doing much better in school.

Now we are all happier. We all seem to have more control over our emotions. I understand that 8 and 11 year old girls can be emotional and moody anyway, but the outbursts of rage are gone. They can choose to get along now. I can choose to be patient and kind.

I am not saying that everything is perfect now. Like all families, we are a work in progress. There will be days where we have symptoms that can cause upset. I have days where I am very symptomatic and in a lot of pain. I still slip up those days, but I try to keep myself separated from the kids when I feel like I am losing myself again. My husband has been pretty helpful about that lately.

With the help from the medicine, my other coping strategies help more. Keeping track of my symptoms, my hormones, my cycle, and the weather help remind me to take outside influences into account. I can remind myself that my increase in pain is due to PMS or the rain. Today it is because of both and I am struggling with some pretty bad and pain and fatigue, but I know why and I have more control. I can remind myself that these other things are making it worse. It really helps me stay focused. I can be the mom I used to be all the time. I feel like I am the person I used to be again. I am not talking about energy levels or pain levels, I am talking about my personality.

Have you ever lost your personality? Have you ever lost what made you you? Have you ever found yourself unable to control yourself, drowning in dizziness, pain, and fatigue, wishing for it all to end, hating yourself because of the way you treat the people around you knowing that isn't who you were? Lost in rage, unable to feel a connection to anybody or even see the people around you as people instead of objects that cause pain? Feeling trapped deep inside your brain, being constantly tortured by your own body? I can only imagine that this is how my children felt too. No wonder the whole house was in chaos. There were no loving feelings, no compassion, no comforting hugs for them. It has been a living hell.

All I ever wanted, since I was a little girl, was a happy family of my own. That, along with all my other dreams, seemed lost to me. Now I feel like I could attain some of my most important dreams. The happy family, the loving mom, the loving marriage, being able to clean the house, cook good safe food, take the family on outings, finish crocheting projects, use my sewing machine, go to yoga class, swim laps, go camping, hiking, fishing, and when all the kids are in older maybe get a job again. The last one is probably an unattainable dream considering my condition is degenerative. I am trying to just concentrate and what needs done now. Most of my childhood dreams are over. I won't graduate college, I won't have a career, Never make enough money to buy a house or have new cars and fancy clothes. I will always be poor, disabled, in pain, tired, one episode away from getting permanently worse. But, I have a reason now to go on. JOY. I can feel joy and so can my kids. Life seems doable now. I can push through as long as I can see those smiles on my kids faces and feel the warmth flood my heart.

Ghosts of my Old Self.

2015-05-08T17:12:00.002-05:00

Yesterday was glorious. Legendary. A day like I haven't had in 20 years. And I did so much stuff.

I felt confident, happy, and energetic. My muscles were working right and hardly hurt. My joints felt sturdy. I worked all day in the garden with my husband. I avoided the really hard work of vigorously shoveling, pushing the wheelbarrow, or carrying the huge bags of mulch. My husband was just surprised I was even outside and helping. I felt fantastic. I crawled around in the dirt on my hands and knees, getting my hands and knees caked with mud, working. WORKING. Physically working.

Looking back it feels like a dream. I know it was real though. I can feel every muscle in my body right now. Each of them screaming with their own pain. All of my joints creaking and groaning, complaining. The fatigue was bad. I would do it all over again. I have plans to do stuff like that all summer. I found something that makes me feel hugely better. It is 280 mg of caffeine in a little shot bottle. It has all kinds of b vitamins and some propriety blend with tyrosine in it. I had very little anxiety, very little pain, no fatigue, no headache, a general alertness, and a pleasant disposition. It was ecstasy. I don't know if it was the vitamins with the caffeine or if it was just the huge amount of caffeine all at once, but I want to do it again.

For a whole day I felt like a real human being. I felt alive.

I have plans this summer and I want to be able to participate in them. I want to live. I want to keep living again this winter to, so I am going to do my best to get everyone in shape before then. The kids are all signed up for camp, swimming lessons, and physical therapy. On top of that, I want to help fix up the house we need to move into. It needs lots of work done and I want to help. I always loved helping with that kind of stuff. I want to go camping and actually do more than just sit in a chair, or sit in the canoe, or otherwise not be a part of the fun. I want to row the canoe, help set up camp, and go on hikes. I want to swim laps and play at the beach. I want to do all of that and be able to keep all the clothes, sleeping bags, and rest of the house clean. And I want to be nice while I do it, enjoying the company of my children and husband. Cherishing them. Smiling when they talk to me. I want to enjoy living. Simple, right?

The anxiety really let up the last 3 days since I started hyper caffeinating. It seems like it would be the opposite. You would think my heart would race, my chest would hurt, and the anxiety would get worse, but it got better. When I went back to the store where I had bought them, I found they had them on sale for 75c each. I bought 36 of them and will buy more if they still have them the next time I am there. I will accomplish my goals this summer. The fixing the house thing and moving into it, is the huge thing. That has to get done no matter what. That will happen on the weekends when he isn't at work. The only way we will accomplish this is if I can put in almost the same amount of work that he does. During the week I will concentrate on the appointments and swimming lessons. All of the kids have shown an interest in helping, which is great, but I am still hoping I will be able to get grandparents to take the kids at least half the time. Both of them are heading into retirement so it looks like it could happen. That would be awesome. Then it will almost feel like going back to work.

Now there's a dream. Going back to work would be a miracle. It would be a dream come true.

So while I wait for the doctors to catch up to me, I will continue to self medicate. I found a thing to get me going, I have icy hot, ice packs, muscle relaxers, lorazepams, all the different vitamins, essential oils, and gatorade mix. All I really need now is a way to treat the pain. I will still have pain sometimes, like when a storm is coming or I injure myself. I need to figure out what I am willing to take or try. I suppose I will see how bad it gets. All I really know is that I can't continue to be a lump on the couch, yelling angrily at life as it passes me by. Bitter and angry. That is no way to live.

Fighting For My Life.

2015-03-24T13:14:00.000-05:00

Nobody believes me when I tell them how exhausted I am. I must not look tired. I must not look like I am so exhausted that it is a major thing to get up out of my chair and do what little I do. I look young, healthy, thin, pretty even. No one understands just how bad the struggle is to get up and stand and do housework. Just housework. By housework, I mean dishes, washing down the counters, switching laundry, changing cat litter, sweeping, cooking dinner, making appointments, grocery shopping twice a month, paying bills once a month, talking to teachers, potty training a toddler, cooking food, changing my clothes, and maybe taking care of my own hygiene a few times a week. That is a comprehensive list. It does not leave anything for date nights, hanging out with friends, having friends, visiting family, taking the kids to all the fun things I need to take them to in order to keep them active, playing outside, helping with homework, cuddling, conversations, going for walks, doing fancy things to their hair for school, giving them baths every night, reading them bedtime stories, and many other things. The list of things I can no longer do is insanely long. It gets very saddening to think about all the things that I need to give these kids and can't.

Every day, I get up out of bed. The task is huge. When I regain consciousness, the first thing that I feel is pain. I wake up with a headache. It is huge and pulsing. I can feel it in the back of me head, in my temples, behind my eyes and in my ears. It pulses and vibrates, whooshes and rings, aches and stabs. The second thing I notice is the pain in my legs. It feels like static. The calves ache and pulse, my ankles creak and sting, and my knees are stiff and sore. The I roll over hoping the headache will lessen. That makes my hips hurt. They ache and sometimes I can feel some ligaments pull too far like when i was pregnant. Sometimes my pubic symphysis pulls apart a little. I lay there for a few minutes to catch my breath, knowing that more movement will mean more pain.

I can hear everyone else up for the day. My husband gets up real early and is the one who gets everyone up for the day, including me. He is so kind about it. Kissing me awake, telling me gently but firmly that it is time to get up and he is going to turn on the lights. I have told him so many times how hard it is to get up but that I need to or else I feel worse. I have already gone through all this pain before he even comes in to turn on the light. I am already exhausted and want to go back to sleep, but I get up. As soon as I try to sit up my back complains. Did you forget about your scoliosis while you were sleeping? Being upright lessens the headache a little, but my lower back is sore now. It makes my hips creak. I think about standing up. I'll just rest here for a minute. It helps to go slow, for the pain and the orthostatic intolerance. Finally, I stand up. I have to go make the kids breakfast because they are out of cereal. The pain on in my legs turn into a buzzing feeling. My knees complain, the bones feel like they are rubbing against each other. My ankles feel weak and stiff. The bottom of my feet are cramping. I hobble to my dresser.

I feel drunk and hungover at the same time. The world is wobbly. Everything looks dull and staticky. My head is still ringing. It is loud in my ears. As I stand at my dresser, reaching for my pajama pants, the ringing dulls a little, the pain drains down to just being in the bottom half of my head, and my eyes feel less cloudy. Now the rest of my body starts pulsing with the pain. It is like it just migrated instead of getting better. Now my arms and my legs pulse with pain. I keep moving. I have to go make breakfast so my kids can go to school. I have my pants on, slipped into my slippers, put on my sweater, and checked all my ring splints to see if they are all still there. Now I have to walk down the hallway. Each step is painful, but not too painful. I have learned to live with it and to go on moving anyway.

I make it out to the kitchen and heat up a mug of green tea. I quit drinking coffee. I was told it was a fructan. I don't use sugar or anything in it. I use it to take my stomach pill. Then I fry up some bacon and eggs for my kids. Usually they make their own cereal, but they are out today. I was going to make bacon and eggs for myself anyway. The skillet is heavy and hurts my wrist. If I eat anything with carbs for breakfast I will have hypoglycemia an hour or so later. So I eat the same thing every morning. After we eat, we all take our morning meds. Then I go to the bathroom and make my bed.

Now I am exhausted again. I sit down in my chair and reach for my phone. I log my food, my symptoms, and how much activity I do. I log my blood pressure and heart rate. It is a little lower than usual this morning, but not low enough to be too concerned. I kiss the older kids good bye and wish them a good day at school. Here I sit trying to get up and do more stuff. I look through facebook, liking family's pictures and statuses, reading on EDS groups and offering support, and sometimes writing here.

I have to get up. I have to take a shower today. It has been a few days and I can feel it. I know the 5yr old and the 2 yr old will want to get in with me. Whatever. It's better than them not getting clean and I won't have to worry about what they are doing while I am in there. I just have to get up first. Maybe in 20 minutes. Remember to not make it too warm this time. I know your toes always feel cold but if you make it too warm you will get more tired. I really want to wash my hair. A shower might help wake me up. Just do it. Just get up. Why is it so hard?

Time's up. Get up. You know you have to. Just get up. Please get up before you run out of time for a shower again. You can sit down again after you get dressed and brush your hair. Just please get up and take a shower!!

Ok. Took a shower. The 2 kids got in with me. Washed all of our hair. The kids dressed themselves. They are actually pretty good at matching stuff. I am impressed. They even brush their own hair and teeth. Sweet. My hair and teeth are brushed. I feel like I just did an hours worth of heavy exercise. I am exhausted. I wanted to put on eyeliner and mascara. I chose jeggings again. I love the way they feel on my calves. They are tight on them. They lessen the pain and tingliness in them. They go all the way up to my belly button. My day always goes better when I wear them. Kinda like compression stocking but not as tight. It makes me wish I had compression sleeves for my arms. That reminds me to pay attention to my arms. Ugh. I had blocked out the pain in my arms. I have been sitting in this chair typing for almost an hour. That didn't help the arm pain and tingliness. My fingers don't hurt though. Thank you ring splints. I need to get up again. I have to clean the kitchen and make lunch. Please get up. You can do it. The kids are going to be hungry. They will whine. You have to feed them or they will get low blood sugar just like you do. Just get up and do it. I am so tired. I just want to rest for a few more minutes. You don't have a few minutes. Just get up and do an hours worth of work and then you can sit down again.

I did it. I put away the clean dishes, washed the dirties, washed the counter and the table and then made a simple lunch. I feel like falling over. My head feels heavy. I can feel the headache there still. Everything still hurts. I would take tylenol but it gives me rebound headaches. I would take ibuprofen but it makes me feel sad. I am not sure why and neither does my primary. I use icy hot. I rub it into my wrists, elbows, and shoulders. That helps for 20 min or so, but when it comes back it seems to hurt more than it did before. I sit. Don't sit too long. You'll get stiff if you sit too long. Keep moving even though you are sitting. Move your legs. Move your feet. Hold your head up just right. There. The headache lessens. Everything else still hurts. Aches everywhere. I wish I could find a medicine that makes me feel better. Why does all the medicine make me feel worse? I don't need more dizziness and fatigue, I need less. My thigh hurts. It feels like it is coming from the hip on that side. My knees hurt. My wrists. I need to get up and do something. Maybe that will distract me from the pain. Put it in the background. Don't think about it. It is just sensations. Just sensations. Get up an move. Go switch laundry or something. Then you can sit back down again. Please get up. Life is passing you by.

I get up and switch laundry, I even find a load to fold. Towels. It hurts my shoulders. I do it standing. I remember my yoga and hold myself right. Anything to try to keep what muscles I have. I always try to hold myself right. Good posture helps the headaches and the muscle aches, keeps things from getting subluxed. I remember to engage my muscles in my legs. Don't hyperextend. Hold your back right, you don't want to make your scoliosis worse. I'm getting dizzy now. All done. Put them away and go sit back down.

Sitting. I sit a lot. I would prefer to be active, athletic, energetic. I would prefer to deep clean, take walks, play, lift weights, even do the WII fit again. But I am sitting, too tired to get up. My brain is awake though. I get on the laptop and talk to people who have the same issues I do. They remind me to not give up, that I am worthy, that I do feel this way, that I am not making it up and they feel the same way. I push myself. I have to get up again.

I have to organize the dirty dishes and make dinner. Something easy. I made meatloaf and green bean casserole. Very easy. i use my kitchen aid to mix the meatloaf. I let the kid mix the canned green beans with the canned cream of mushroom soup. I let the youngest sprinkle on the cheese. I put them both in the oven. I feel very grateful that I was able to let the kids help without getting angry. I am always so cranky. They like helping cook. I usually just want to get it done with but they actually helped this time instead of making a big mess. It ends up being tasty. I still wish I had been able to make bread to go with it. I miss making bread.

I sit down again. This time it is for the rest of the evening. I sit there for 2 or 3 hours. Just watching tv, playing phone games listening to the kids. I feel numb. Everything seems dulled. My husband says everyone is too loud but I have a hard time hearing them. It seems like I am under water. I feel drunk still. I am so tired. I'm trying to sit upright but I keep sliding over to the side. I can feel my scoliosis. I can feel the rounding. I am scared it will get worse. I have to go lay down. I am scared to lay down. The headache. It gets worse when I lay down at night.

I go lay down in bed. I am sitting reclined. Back is straight, neck curved forward. I can't do this either. So I lay flat. Within a few minutes my entire head starts ringing. It is pulsing. I can hear my blood in my ears with the ringing. I can feel the pressure behind my eyes and in my ears. It doesn't just hurt in the back of my head anymore, now it hurts in my temples, the sides of my head, and it doesn't let up. I can't sleep. It hurts and I can't sleep. It takes forever but I finally fall asleep.

I often wondered if the fludrocortisone made this headache this way. This isn't the same headache I had before is it? It is the same headache. The same way it hurts. The way it changes when I sit up or lay down. The same headache I first complained about 12 years ago. The same neck ache I complained about 14 years ago. The same drunk feeling I had when my vision changed. The same out of it feeling I had in first grade when I jerked and accidentally stabbed myself with a pencil. This has been with me my whole life, getting worse as I get older the same way all my other things did. Another degenerative chronic illness with no cure, just treatments that might make me feel worse.

What do I dream about? Sometimes I don't dream. It doesn't even feel like I was asleep most times. Every once in a while I dream. It might be a pleasant dream, happy and full of smiles. More often it is filled with anxiety and fears. Sometimes, I still get the dreams I had when I was little. The large rolling ball or pencil coming towards me to roll me over. Rolling against my eyes, right on top of me. I am not scared of it, it never gets me, but it just right there on top of me, pressing me down. It feels like vertigo.

Crazy anxiety.

2015-02-16T17:39:00.003-06:00

I am going crazy.

I hate waiting for doctors to call me back. they already don't like me because I go in there telling them what I expect to find and what test I want (it makes friends fast). I am sitting going over the tests results myself and forming my own conclusions. I have read everything I could, compared MRI pictures, researched optimal hormone levels and symptoms. I am sure I am right. Just sure. But unless a doctor agrees with me, it won't matter. And I am scared that I put myself out there and I won't be right. I will have made an ass out of myself in front of a doctor who won't want to help me anymore.

But on the other hand, I have been right for the last 2 years and that is the only reason why we know that me and all the kids have EDS and fructose malabsorption. I knew. I know now. I know that we have, at the very least, intracranial hypertension. I gave all the head circumference info to Dr. Diana and she put them in her study and she said my son, and to a lesser degree my daughters, had sign of it and that to expect I would also.

Do you see the circles my mind is going in right now? I am literally driving myself mad with anxiety. At least I have energy to clean the house, nervous energy.

I just keep coming back to worrying. I can't stop looking up more things on the internet and it just makes me more sure. I have looked at hundreds of normal and partial or empty sella. I compare my current pics to my old pics. I can clearly see that my pituitary is squished. I know I am intelligent enough to learn how to read an MRI. I learned enough to be able to tell what a normal pituitary looks like, what spots are the wrong kind of spots, how to tell where the skull bone is, ans the difference between a herniated chiari and a non-herniated chiari is. I am confident that I know these things.

But what if I'm wrong? Then what is the answer? How will I keep my kids from becoming disabled? My son has already been through several things, several degenerative changes, at the exact same age that they happened to me. He could end up disabled before he has a chance to do something with his life. He will end up like me, living off of the charity of the government, poor and living paycheck to paycheck. Barely affording to live, not enough money to enjoy living. A hell of pain, torment, headaches, nausea, fatigue, and isolation. And then my daughters. It will go the same for them. I feel like I am racing the clock trying to save their lives. That doesn't help with the stress.

I am fighting for our lives, against the clock. I am fighting against doctors who just want to shove any old med down our throats so we'll quit complaining. The ones we kept were the ones who had enough compassion to actually want to help us. Some doctors hear that I have been diagnosed with mental health issues or a drug addiction and just stop right there. They just chalk me up to some crazy, attention seeking, drug seeking, drama queen. They don't want to believe that I feel as bad as I do. They don't understand the courage it takes me to fight against the anxiety and go let it all hang out in a desperate search for some relief. Some real relief. They think I want drugs. I don't need doctors for that. They are everywhere. That is not what I want. I want real physical energy. A real feeling, like I am a real human being. A human being that works out and feels their muscles get stronger instead of just hurting too bad. A human being who can play with her kids longer than 2 min without getting winded and dizzy. A genuinely happy human being who enjoys being alive just for the same of being alive. I don't want to be high, drunk, or stoned. I want to experience life, feel life, remember life, before it passes me by. Then all I will be left with is a life of nothing. Just sitting on the couch, watching TV, a drain on society. I want to volunteer, be helpful, take my kids on trips, and be all around human being. I am tired of the meds the doctors want to give me. Antidepressants that don't make me less depressed (the therapist says I am not depressed). Anti-anxiety meds that kill the anxiety, make me feel high, make me feel hungover for at least a day. A day I don't get anything done, a day spent dizzy and exhausted. Another day I can't do more than the bare minimum for my kids. A childhood wasted. A marriage wasted even. Another day I don't have the energy to connect with him. Another day I don't feel like going to his family's house or hanging out with his friends and their kids. Another day.

Around and around and around in circles. That is where my mind goes.

Roller Coaster.

2015-02-11T16:10:00.000-06:00

I feel so lost sometimes. One minute I know what is going on and the next I feel so lost and confused. I am so tired of fighting to keep it together.

Yes, I have been diagnosed with mental health disorders. I was treated for them to. Most of the treatments were ineffective and some made me worse. Actually, I had problems with every medicine I have tried except the fludrocortisone. For some reason it is the only thing that helped with the anger issues. It gave me back my compassion and patience. The therapist has told me that the only thing she sees is chronic post traumatic stress disorder. She sees no depression even though I have told her how incredibly sad and wishing for death I get when I am in my tired phase. This wasn't the first one who told me this either. She see my anxiety but says it is caused by my dysautonomia. She has experience with this as she counsels many people with physical issues that cause psych symptoms. She also has some of the same issues and her son also has EDS and dysautonomia. She supports me in my efforts to get medical help from the doctors especially after the fludrocortisone improved several symptoms. She supports me, but when some medical doctors see mental health diagnoses on my record they want to discount my experiences, even though I have proven that I have physical issues more than once. The fructose malabsorption, EDS3, and dysautonomia can all cause psych issues. Several of the doctors I have seen discount that. At least my primary doctor, my geneticist, and my therapist believe me. I am desperate to either fix this roller coaster or at least lessen it.

I am writing this out yet again in an effort to organize my thoughts about it. This way I can explain it to doctors. I feel as if my mind has developed more issues. I mispronounce words, substitute words unknowingly, and even slur words several times a day. When I get into the office, the anxiety makes the organization of my thoughts harder.

I find myself going in cycles. It feel like I have 2 cycles going at the same time. Just as the Earth spins on it's axis and around the sun at the same time. Did that come out right?

On the one hand I can feel a ebb and flow of physical energy. It goes from not being able to get up and do anything, like someone is sitting on me, like my muscles are starving for energy, to being able to do some things but less than before the infection. This cycle is the same as before the infection but the lows and highs are lower overall, physically. Caffeine has no effect on the lows. I can drink all kinds, even energy drinks and have no more ability to get up. I can feel the speediness in my brain but not in my body. I am still stuck and when i do get up to do the bare minimum of work I get tired much faster. When I am in the up, I am way more sensitive to caffeine. Just 8 oz of green tea or diet pepsi gives me anxiety feelings. I can move and get up and do stuff, I feel confident, I can get paperwork done and appts made, and I feel emotionally stable (no jealousy, distrust, or insecurity). I still get tired real easily and I have to rest often but I can do more. Definitely not as much as I could before. I have suffered these setbacks before. Once after an ex gave me a STI, and once when I became disabled with excruciating neck pain. The first time it took me 2 years to recover. The second time it took me 5 years to recover. This time it happened after a pelvic infection. I suspect it was from my tubal removal surgery. Since the recovery from the infection I have felt like this.

On the other hand I can feel a different cycle. One I can create. If I give myself anxiety or force confrontations, I can get more energy. It feels like the other energy but it is accompanied by nausea, pounding heart, anxiety, OCD, and insecurity. I get more irritated but I can still keep control because of the fludrocortisone.

Neither of these cycles seem to be affected by my menstrual cycle. There are only 2 things that I know that is tied to that cycle. One is my libido. It actually surfaces during ovulation and a few days before I start my period. The other is a craving for chocolate and some grumpiness. That happens for a few days before I start my period.

I plan on getting an app for my phone I can track this with so I can show doctors. One that can graph these things in relation to my menstrual cycle.

These symptoms, my son's new symptoms that seem endocrinological, and my daughter's abnormal test results make me even more determined to figure this out. I just want my kids to have a better chance at life than I did. For that I need to feel better myself and figure out the root cause of these other issues. Then my kids can receive proper treatment now before they have too much more trouble. We will all end up with the many issues my mom has. I am hoping for my children to be able to avoid most of it or at least lessen the severity so that they can become contributing members of society, unlike me.

Whiplash. Neck Strain.

2015-01-29T07:53:00.002-06:00

It has been a dizzy few days for me. Saturday was a good day. I had some energy. I had turned on the radio for some extra motivation. I was determined to clean the house no matter how bad I have been feeling lately. I had some Diet Pepsi and taken all my meds. It was going great. I was beebopping along, washing the dishes, cleaning the counters, scrubbing down the table. Then A great rock song comes on, one that people like me like to headbang too. I have been known to really get into the music. Well, I forgot the no headbanging rule and I went to town. I got carried away and I was really enjoying myself. It had been years since I had done that and as soon as the song finished I was reminded why it was against the rules.

I felt like a bobble head. Literally. My neck would not hold itself up. I had stretched and strained all my neck muscles in 3 minutes. At first everything was numb and it felt like my neck was not connected to my head. If I tilted my head at all it would just fall. No support from the muscles. This is a big deal because I already have no support from my tendons and ligaments due to the EDS. I immediately sat down so that my high back chair could support my head for me. At this time I realized that I do not have a neck brace and I really needed one, especially for the next day when the muscles would be all sore and I would need to take muscle relaxers. I was afraid to take them without a brace to support me.

I woke up the next day to some very sore muscles. The whole back of my neck and halfway up my head was screaming at me for being so stupid. It hurt halfway down my spine and over the tops of my shoulders. It was Sunday and the only place open who might be able to give me a neck brace (without resorting to the ER) was urgent care. I got in right away and the doctor said I definitely needed to wear a neck brace for a day or so and to take my muscle relaxers. I told him that I just needed a brace, I had the other stuff at home already. Apparently, it is now illegal for them to stock braces in the clinic and I need to go get one at a medical supply place. Apparently, the only place I could use my insurance to get one was 50 mi away. Apparently I would need to pay out of pocket for one. Good thing it was only $14 but that still took money out of my gas fund for the week. Ugh. I about started crying on the phone with the insurance people.

I finally found a local place to buy one and put it on right away. The pain relief was amazing. I wore it the rest of the night and all night while I was sleeping. I took muscle relaxers all day Monday hoping to ward off a longer recovery time. I napped most of the day with the brace on. By Tuesday I was feeling all right but still a little sore. I could hold my head up myself so that was progress. I took off the brace and went about showering and trying to get something done. I got about as far as a shower and feeding the kids.

Wednesday was the day. Most of the soreness was gone. I got up early, showered, ate, took my pills, and started drinking Diet Pepsi. I was determined to get the dishes done that had accumulated while I was down. I am going to take this moment right here to complain about how no one thought to do any of this for me while they could see how down and out I was. I suppose I could have asked but I would have just gotten attitude about it. Why would they do my job for me? But that is an ongoing frustration for me. No one in my house ever wants to help me keep the house clean and I feel like a maid. A disabled maid who gets whined at for daring to think that they could at least pick up their dirty clothes or the crap they were playing with. You know, the bare minimum.

I got the kitchen cleaned, again while listening to music and remembering the rule to not headbang. I cleaned the counters and washed the table. I drank Diet Pepsi for energy (because coffee, green tea, or B vitamin supplements don't do it for some reason) and sang along to some good old rock and roll. I washed 4 or 5 loads of laundry and folded 3 of them. I had a shower and brushed my teeth. I even changed the cat litter. I made an easy dinner and then just about collapsed. I wanted to just sit in my chair for the rest of the evening being a lump but I had an important meeting to go to at church. My UU church offers a class for students called Our Whole Lives. I love this program. It covers sex ed and appropriate relationships. I can handle sex ed but I am damned when it comes to teaching about appropriate relationships, because I have no clue. My relationship is obviously dysfunctional although we are extremely committed. So I had to drive there, sit in the parent orientation, pay attention, try not to stick my foot in my mouth, and then drive home. I was so exhausted that I only stayed awake for an hour before falling out. I was really glad I had gone though. I hadn't been able to go to church for awhile because of the increased fatigue. I missed my UU friends. I miss church.

Today is Thursday. The older kids have gone to school, the husband has gone to work, and I am home with the younger 2. The preschooler has school today. Thank goodness she doesn't have to be there until noon. She already missed 2 days this week because I couldn't drive her and I couldn't get a hold of my dad to take her. I need to take her today. As I sit here I can feel the exhaustion from yesterday claiming me, telling me to go back to sleep, to take a nap, but I can't because the kids need breakfast. I need to drag myself through another day. I have 2 loads of laundry to fold, clean dishes to put away, another load of towels to wash, and kids to feed and dress. It is cold and windy outside and it makes me feel tired and in pain.

How do I make it through another day? I feel like I have a heavy weight pushing down on me all the time. An inescapable burden. The caffeine goes to my head. I can feel my brain pick up and my heart start to beat faster, but my muscles have no energy.

Daily Diary

2015-01-24T08:55:00.001-06:00

I am just going to start posting daily. Like a diary of my daily struggles. What was bad and what was good. To remind me that there are some good things in my life.

I have noticed that every time I get used to the fludrocortisone that I started getting bad again. I have started getting mean again and I hate it. That is not the kind of mom I wanted to be ever. I have been taking time out to help me center myself and regain composure. I don't want to cause more health problems for them by over-activating their fight or flight. That could cause them more issues there.

Yesterday wasn't too bad. I got up in the morning and drug myself through the first few hours. I made breakfast and took my pills. While I was sitting down and waiting for my pills to kick in, my husband called and asked for my help. His truck was broke down out of town and he needed me to come get him so he could have it towed to the shop.

That woke me up. It was an emergency and apparently it kicked in my hormones or something bc I was wide awake and more energetic. I still struggled to get the kids dressed and out of the house but I felt good. We got there and I sat in the van while we waited for the tow truck. Everything in me was fine. Very little pain. We finished up and got home several hours later. I was tired but still keyed up. So I used that to do the dishes and wash the table and counter. I even washed and dried several loads of laundry. I made dinner. I put away left overs and then I started crashing. I felt like there was a weight pushing down on top of me. I didn't feel dizzy. I felt irritated and angry. I hated everybody and how the never help. Look at all I did and they just sat there and did nothing. My thoughts were getting increasingly agitated and out of order. I used my many years of therapy and the control gifted to me to stop myself and go to my room alone.

Unfortunately, nobody would leave me alone. It was one kid after the other coming in to bother me. I had went to my room so that I couldn't hurt my kids. I was so tired and just wanted to relax. I noticed the old verbally abusive me (not the real me, i slowly became this person within the last few years) coming out. I was yelling get the fuck out and leave me the fuck alone. I had to stop myself. Finally my husband started putting them to bed. I thought maybe now I can just relax. Well, since the kids were asleep he decided he wanted to come to bed with me and watch my show with me. At first I was irritated. But he laid so still and cuddled me just the right way. He feel asleep right next to me. It was so sweet. And finally I felt calmer. Finally, i wasn't keyed up anymore. I shut off my movie and went to sleep with him.

It was the best nights sleep. All my kids stayed asleep and in their own beds. I feel rested this morning. Well, as rested as I usually feel which isn't very rested.

I just have to hold on until Feb 6th. Then I get to see the endocrinologist. Maybe he can fix me. I desperately need to be fixed. I want to be the calm loving mother I was all the time. I don't want this overtired bitch ruining my delicate kids. Their endocrine systems are delicate too.

My downward spiral.

2015-01-22T11:49:00.000-06:00

Have you ever been so tired and uncomfortable that you could sleep for a week? I have slept for weeks at a time. I have had at 4 or 5 major episodes in my life since I can remember. The first one when I was in elementary school, 4th grade maybe 5th. I called myself in sick for several weeks. Skipped school to stay in bed sleeping or watching TV. Exhausted. Bad stomach and hip pain. Took an xray where I had to swallow some chalk liquid. Never found anything wrong.

There were several small times in high school. I would just sleep all weekend.

There was the time when I left my ex-husband because he had been beating me. There had been many occasions where he had sent me to the hospital. The first time he had been beating me in the head. They said that if I had been hit one more time in the head I would have been dead. Another time he had broken my jaw. The very last time I had suffered bad hematomas to every major muscle group of my entire body. As soon as I got out of the hospital I took our baby and left. I hadn't hardly slept the whole year and a half we were together. When I finally got to my grandma's house I slept an entire week while she took care of my baby. I couldn't do anything else.

Then I was living with my ex-fiance. It had been going good for a year. His kid and my kid lived with us. I was working and I felt great. I cleaned house, cooked, went out together, took the kids places, and even helped him with his business. I found out I had gotten trichomoniasis. At that time I was told it was something that just happened. I now know that it is a STD. Then I got sick. I don't remember getting a stuffy nose or anything. I just felt huge body weariness. I couldn't stay awake. Then my neck started hurting really bad. I couldn't work. It felt like I had the flu. I went to the doctor who prescribed medication after medication. It messed me up so bad that I ended up in a psychiatric hospital because I couldn't stop crying. I now know it was because of all the medicines. I recovered a little but then we split up. He moved me out while I wasn't home. When I got to my mom's house I was very tired. Exhausted. It took everything I had to move my stuff and I needed my friend's help. I kept getting more and more tired. Eventually I crashed. I slept for an entire week. I couldn't get out of my bed except to pee. Even then I was unsteady on my feet and I felt drunk. I was very out of it for an entire week. Thank goodness I was living with my brother who helped me take care of my son who was in first grade. After that I got better slowly and went back to work.

Which brings up to the next time. I had been at the job for almost a year. It was a desk job. I answered phones and sold phone services. After awhile my neck started to hurt. It got so bad that I couldn't move. I had to quit my job. I couldn't get out of bed again. My son was in 3rd grade. Again he was taking care of himself. I could only get out of bed to pee or get a drink. I started having bad migraines. Once again doctors tried meds. I had migraine meds, amytriptyline, muscle relaxers, wellbutrin, and a few other things plus constant ibuprofen and Tylenol. The way they just let me suffer through the pain of the migraines and my neck without giving me pain meds was ridiculous. But I had a diagnosis of fibromyalgia. The next few years were rough. I was disabled. There would be no more working for me. I couldn't even take a shower most days let alone feed my kid. We were still living with my brother though.

Over the next 5 years I tried everything they wanted me to in order to get better. I did their water physical therapy. I saw a therapist and went to a mental health group. These five years were when I had all my dental work done. One after the other all my teeth became infected. They all needed root canals and crowns. Some needed pulled. My gums were very infected and I needed major help. I am lucky. I didn't end up with dentures. My dentist is awesome and did his best to let the 28 yr old woman keep her original smile. I even ended up with a whiter smile because of the crowns instead of the permanent yellow color they had been before. I think battling these infections caused the overwhelming fatigue. Once it was under control I started getting better, but never as good as I had been before. I was able to start cleaning and cooking again, visiting friends, and being with my son. During this time I met my now husband. I was able to do everything but work.

Then we had a baby. The whole time I was pregnant and had a newborn, he was gone. He would stay at friends houses after work and get drunk. He was hardly ever home and when he was he was drunk. We stopped having fun together and I started to resent him. Every time he didn't come home I would get real upset and have panic attacks and cry myself to sleep. I would feel dull for days afterwards. I will always be resentful of how this affected my pregnancy. It got better after she was 2 months old. We were given custody of his older daughter by the state. They were involved and monitored my husband's every move. He had to be sober. It was the best part of our relationship ever. He was emotionally available, home, and helping with the kids. I recovered again. Mostly. Until the court case was over and he started doing his stuff again. I was upset a lot but I could still handle the kids and house. I even got pregnant again, on accident. Slowly over the years everything got better, but I am sure the stress of living with an uncontrolled alcoholic was just as damaging as my abusive ex husband because of my existing PTSD.

Here are the good years. I cleaned house, figured out medical problems, started the FM diet, got the EDS diagnosis, was doing yoga at the YMCA, lost 30 lbs, had no infections, read my kids bedtime stories, and was active at their school and started church. I would get tired in the winter, but I could still make it to church and do my work. Then I got pregnant with our last child. The pregnancy went well even if their were some stresses. My husband had to have eye surgery. We also had some very stressful moments over our sex life that started some bad fights. We had had long term issues with what I wanted out of a relationship in terms of emotional availability and they came to a head towards the end of this pregnancy. I was still doing well though. I gave birth to our son at home. It made my husband happy, It was the first son he had fathered. It seemed to help him to get better and he has become more emotionally available. There was very little stress in our relationship at this point. I was cleaning house, breastfeeding, cloth diapering, making homemade bread, following our diet, doing yoga and bodyflow, swimming with the kids, camping, walking, going to church and being active in the Sunday school even attending meetings. I even went to Chicago for 3 days with the youth group. I walked for days and felt energized when I got back home. I lost the baby weight again, an entire 35 lbs. My hips weren't falling out of socket and I had more energy.

I finally decided that I was done trying to use birth control. I went in to get sterilized. I had already lost one tube to ectopic pregnancy. Getting my other tube tied carried the risk of another ectopic and it maybe undoing itself. So I asked the Gyn to just remove the other tube. Recovery went well and I was back on my feet within 2 a few days. I still had to take it easy for 2 weeks because of the EDS. I didn't want to rip anything open.

My best friend and my grandma died within 2 weeks of each other. It was very hard and i grieved very hard. But still I felt good. I spent the next year helping to clean out her house. I had the energy to do that and to run my own life and clean my own house.

A few months passed then I started getting more tired again. I couldn't control my anger. I started snapping at the kids and calling them names. I walked around the house acting like an angry alcoholic but I wasn't drinking. I had weaned my nursling months ago. It seemed like everything anybody did felt like they were doing it on purpose to hurt me and cause me pain. It wasn't overwhelming but it wasn't nice for anybody living with me. I thought I was just stressed out. There were upsetting things happening at church and I thought I was just sad about them. I stayed home and tried to rest while doing housework. I could still walk the kids to school but I found myself yelling at them all the time. They started getting depressed and stressed out.

I didn't know I had an infection. I had no fever, no pain, and no nausea. One day while having sex with the husband, I heard a pop and felt a gush of blood run down my vagina. It was messy like I had started my period. Even then it didn't hurt. I made an appointment with the gyn. By the time I got there I was dizzy and weak. I felt drunk all the time. I couldn't think straight, I couldn't walk straight. I was a mess. I shouldn't have been driving and I barely made it to my appt. I felt so bad I almost went to the hospital instead. They did a vaginal ultrasound, didn't see anything, and gave me doxycycline. She said that it was most likely an infection and to take the antibiotics. For the next 2 weeks on the meds, I couldn't get out of bed without feeling like the town dunk. I slurred my words, ran into walls, stumbled around, and couldn't see very well. When I finished the antibiotics I thought that was it, I would feel better, but I didn't. My heart was doing funky things and I still felt drunk. I gave it another week until I got scared and went to the ER. I thought I was having a heart attack or the infection had come back.They found nothing wrong. They did blood tests, ultrasounds, abdominal cat scan with contrast, and a chest xray. They even tested for VDs and other infections. Nothing. Went to the cardiologist the next week. Diagnosed with neurocardiogenic syncope. I still don't know what caused the infection.

Since then my heart does funny things. The fludrocortisone they gave me got rid of all the personality changes though. I am forever grateful for that. I am not treating my children badly anymore. I have patience for them and talk to them. I still can't do much though. I still can't read them bedtime stories or walk them to school. I can barely do any housework. I have to choose between laundry and a shower. I can't put away clean dishes and then wash the dirty ones. I have to do one job one day and the other job the next day. Even then I will go a whole day doing nothing in between. Today I have done nothing really. I washed the pillows for the kids and dried them, made breakfast for the 2 younger kids, and called to make an appt. I didn't take the preschooler to school but I did call my dad and ask for help. I am more than just tired. It is like my muscles refuse to work and when I do get up, my heart rate picks up and I get exhausted that way.

I keep the hope that I will recover from this too. That with the warmer weather I will feel better and be able to go back to church and yoga. But I keep remembering last summer and how i was yelling at my kids. I am afraid there will be no getting better this time. Maybe this is my better after the infection. That thought leaves me paralyzed with fear. I had dreams of what it would like to have kids. Fishing with them, talking to them, walking with them, teaching them all the mysteries of the world. All they are learning is how to live with a chronically ill mother.

More tests for me and my kids.

2015-01-22T10:14:00.001-06:00

Usually I hate getting tests done or blood drawn, however I have come to love it. The more test I have done, the more I learn about what it is I am dealing with. The more I learn about myself, the more I learn about my kids. I worry about them so much.

My kids are just like me. They have the same issues and act the same way I did when I was a kid. The genes aligned in such a way that all my kids inherited the EDS and FMS. I am sure it is because I got it from both of my parents. I can see it in both sides, from my father's mother and my grandmother's father. All I need to do is look at family pictures and I can see the physical traits. I can't stop researching everything. I need to know more. I ask questions about family health history and do more research. I need to find to out how I can help my kids to not feel like I do. I am suffering and the last thing I want for my kids is to suffer.

So more tests. It has been shown that my 7yr old also has symptoms of orthostatic intolerance. After just 2 weeks on fludrocortisone she felt better. She commented that she didn't know that it wasn't normal to feel spacey and dizzy until it was fixed. She says that it is easier for her to listen in school and to do the whole gym class as well. She is too young for a tit table test. The cardiologist just went on family history and symptoms. I just wish she had the energy to do her homework too.

I refuse to believe that our overwhelming fatigue isn't caused by something else other than EDS and FM. Lots of EDS people don't have the kind of fatigue that makes them unwilling lumps on the couch. Many of them lead lives and do stuff.

So more tests. Either we are just doomed to a life of suffering and pain, or there is something we can correct that will allow more quality to our life. Maybe my children will be able to finish college and contribute to society, support their families, and be happy. I am none of those. Maybe these tests will provide data to help other EDS'ers who have the same problems. Maybe I will contribute to society. This is how I could do it. At the very least I need to make sure my children's quality of life stays at a level they can live with.

We are so close to the end of the tests and specialists we can see. Please let there be that one more answer that will restore some of my functioning. I am not asking for much. I just want to be able to do basic household chores, help my kids with their homework, manage their conditions, do the shopping, go to church things, and have the energy to go to yoga, swimming, or walking with my kids. These are the things I was able to do before this last set back, including making homemade bread and sewing clothes. Most people have a full time job on top of that plus many hobbies. I am left with a few chores a day, either putting away clean dishes and stacking dirty ones or washing dirty ones and cleaning the table and counters off, washing and drying a few loads and shoving just my own clothes in my drawers or taking a shower and brushing my teeth, and driving the youngest to school or do the grocery shopping. I have to sit down after just 10 or 15 minutes. I get so body weary and I just can't do it. I don't want my children to feel like this. So more tests it is.

A huge difference.

2014-12-21T16:51:00.000-06:00

The stomachache is all gone now. I will probably have to take these stomach pills for the rest of my life, but I don't care. This new medicine, Fludrocortisone, is a life saver. They even put my 7 year old daughter on it. It has made the biggest difference in my life and in hers. We are new people.

I am going to try and explain why.

First, the problem was chronic brain hypoperfusion. There wasn't enough blood getting to enough of my brain, all the time. The official diagnosis is Neurocardiogenic Syncope. It was also called orthostatic hypotension or orthostatic Intolerance. I don't know if it caused permanent damage. I am going to ask for some scans soon to check. I am sure this has been going on since I was 6 or 7 years old and just getting worse every time I got sick. The last 7 or 8 years were the worst.

I was an angry, irritable, and mean person. Constantly. No one liked me, not even my kids or husband. For lack of a better word, I was a bitch. I can see that now. I was talking to my husband about it the other day and he said that it felt like a weight had been lifted off of him and everyone in the house. I was making them miserable. He admitted that he had been at the end of his rope with me and he was just barely hanging on until things changed.

Before, it felt like I was trapped inside my own head. I wasn't connected to my eyes, my ears, or my skin. Everything was on the other side of this huge wall of fog or water. Everything made my head hurt. The sound of my children laughing, music in the van if my windows were rolled up, the sun through the window in the morning. Heaven help us if someone yells, screams, cries, plays loud music or flicked the lights on and off. Instant meltdown on my part. I was crazy. It irritated me if the dishes were put away even just the littlest bit wrong or my chair was moved just one cm. I would fly off the handle about everything. Everything felt like a personal attack, everything felt like PAIN inflicted on on purpose. Granted part of that might be the PTSD reacting to a perceived threat. But I was treating my children like the threat, like they were intentionally hurting me. I lashed out at everyone constantly.

I did not enjoy anything. Ever. I did not smile or laugh. I did not like the company of people or my family.

Some other things I noticed was that I had a problem using words. They would sound right in my head but when they were said they were the wrong word or it was pronounced wrong. I also had a hard time finding the words. Filling out paperwork exhausted me.

It would take me 30 minutes to do the dishes. I would start hurting after 10. The pain was distinct. I have read it referred to as "coat hanger" pain, the area between your shoulder blades up the back of you neck. It would hurt so bad, my hearing would get dim and my brain didn't want to process anything else. Heaven help you if you asked me a question or talked to me while I was washing dishes. I could not pay attention to the dishes and the person at the same time. Now I can do 30 minutes of dishes, wash the counter and table, and sweep the floor, without the pain or confusion. My kids can ask me questions while I work and I can form intelligent replies. Just being able to hold conversations with my kids is a huge deal. They were starved for attention.

Speaking of attention, my libido is back. I feel more confident and secure in myself.

I am sure there are more differences I could name. Maybe I will come back and do that.

One thing after another.

2014-11-29T16:50:00.002-06:00

I had just started feeling better. Better than I had in years. And then BAM! Another thing. Always one thing after another.

I had started having a stomach ache every night after dinner. The rest of the day had been fine and then bad stomach cramps. It hurts the most right under the bottom of my sternum. Pushing in on it made it feel better. I thought maybe my digestion had slowed down because I was throwing up every night. I thought maybe I was constipated so I tried stool softeners and miralax. That wasn't it either.

It went this way for about 3 days. The 3rd night it got so bad that I had to ask my dad to drive me to the ER. I was in a lot of pain.

The ER doctors were real nice and one of them even knew about EDS and NCS. I was surprised. They gave me a GI cocktail. It included Lidocaine to numb my stomach and several things to coat it and reduce the acid. They said if it worked then we knew it was my stomach. It didn't help. I was still in lots of pain. They were going to have to give my iv meds. They gave me dilaudid and zofran. That did the trick. I finally had some relief from the pain. They sent me home with lortabs, prilosec, and another med that coats the stomach. No one did any tests other than a few blood tests to rule out gall bladder or liver issues. All I know is that they think it is an ulcer or gastritis.

I have to wait until after the holidays now until I can call the GI and make an appt. If I don't take the pain pills I get real bad pains and I throw up. I have a feeling the new med I started contributed to it. I don't think I was eating enough food with it. Or eating the right kinds. I keep forgetting how sensitive my body is.

Alcohol or other substances.

2014-11-13T19:40:00.001-06:00

Why yes. I have been drinking. Why not? All the shit I have to deal with, you would drink sometimes too. Hey! Guess what? Sometimes I smoke pot too!

Did you know that a muscle relaxer has a more serious side effect for me? Seriously. It's crazy. Pharmaceuticals cause me more problems than a strong drink and a few hits of reefer.

Spend a day in my shoes. Seriously, I will trade you for a day.

I suffer from constant headaches and body pain. On top of that I have constant fatigue. So, I always hurt and I am always way more tired than you could ever think of.

Granted, I know half of what is causing me all this grief. That helps. I can medicate the cause and not just the symptom. I know that I don't get enough blood (therefore oxygen) to my brain. I take my medicine, I drink my caffeine, I drink my water with salt, I feel better. For now.

I have more appts with other departments withing the university hospital ( I am severely lucky that I get seen at a leading hospital in both EDS and FM). Those will help me. I can only hope that they are using my info to help others. ( I mean to ask).

In the meantime, I have issues. There is no cure for my condition. Only treatments for me and my children. It leaves a smoldering guilt behind. What did I pass on to them? If I had known, would I have had kids?

I can't answer that. The biological need to procreate with my husband was strong. I could smell him all the time. The need to make babies. The need to be with him. I still question that. What possessed me? I have an inkling, but I still feel bad about passing down these stupid ass genes. At least, the University is taking me seriously and referring my children to their specialists. All that stuff that is wrong with me, could be addressed in them, while they are young. They could have a better hope for a future, They could go farther in life. I hold onto that.

In the meantime, I do what I can to feel. To feel anything other than the depression, fatigue, anger, anxiety, bitchiness that fuels my life. I don't drink or anything regularly. Any med, any drug can fuck me up for a long time. It can take me days to get over something, esp stuff that lowers my blood pressure. Alcohol gives me the least amount of recovery time. I easily replace the water the next day, if I didn't while I was drinking. But a muscle relaxer lasts for 3 days! A lorazepam (Ativan) lasts me 3 days too. Fuck!

I do what I can to be a human being. I try hard. I keep going to doctors even though I don't want to. I keep hoping for good news even though most of what I hear is "take this med for your symptoms".

Lately, I have gotten good news and a med that helps. it doesn't take care of all the headaches. I have an appt with the headache clinic. Until then I will work with what I have , and what I have is vodka. So I drank some. It is a momentary distraction in my life that is filed with pain. I'll take it. Today.

Hope.

2014-11-01T13:06:00.000-05:00

I recently took a tilt table test. The only thing I had complained about was a constant headache but my lovely EDS doctor ordered one straight away.

I had read about them and I was nervous. Everyone described them as hell. They were right. First the strap all kinds of sticky things to you and hook them up to monitors for constant blood pressure, constant heart rate, and several to track the heart's electrical impulses. At first I was fine. They warned me I could pass out or throw up. I had never passed out before and I most certainly have never thrown up against my will. Within ten minutes of being upright I was complaining of constant hot flashes. They kept getting worse and then I got nauseous. What happened next is a blur to me. I felt like I was falling asleep. I started to dream. I can remember dreaming but not quite about what. Next thing I knew I was being swung down so my feet were above my head. I had passed out. It was so weird, I had never done that before. I remember the hot flashes, the feeling that I had to move but I couldn't change positions, the feeling of wanting to cry and beg to be let down. I did not get the words out. My brain would not move my lips at that point.

It took a week to hear from the cardiologist who interpreted the data. I thought they would say that I had POTS. After all, that is the most common thing you hear with EDS. I was surprised to hear NCS. Neurocardiogenic Syncope. They prefer to call it Orthostatic Intolerance or Orthostatic Hypotension at my Cardiologists. It all means the same thing for me. When I am sitting up or standing up and the blood starts to be pulled down by gravity, my heart does not keep beating faster and my veins and vessels do not constrict in order to keep enough blood flowing to my brain. Once they explained it me, I could clearly see it on the pages of data they sent me. After 5 min, my heart rate and blood pressure drop in tandem until I passed out.

Now, in real life, I don't pass out. I don't even usually feel too dizzy. I have a constant headache. I am constantly irritable and exhausted. Just walking to the kitchen and doing ten minutes of dishes was enough to make me want to lay down for hours. I get "coat hanger" pain, the pain you get between your shoulder blades. Other symptoms that I didn't notice, because they were just a part of my life, were a decrease in hearing ability and sight when upright. I had a general feeling of being disconnected from not only the world but the rest of me. Like I didn't extend down into my body and I was trapped in my brain. I had no confidence and I looked funny to myself in the mirror.

I am using the past tens for those symptoms and I hope that continues. After my diagnosis the doctor ordered me a prescription for fludrocortisone, .1mg. If you remember from a previous post, I am very scared of taking new meds. They always go wrong for me. This could turn out to be no exception. I was told that It would help me increase the level of fluid in my blood stream, helping to increase my blood pressure. This would help me get more blood to my brain, more oxygen. I read up on it and I also needed to increase my salt and my water intake. More reading led me to believe that caffeine helps raise the heart rate and constrict my blood vessels.

So now I am here. I finally got up the nerve to try the new medicine. The first day was a little rough. The med made me sick to my stomach and I had only started with half the dose. By the end of the day I felt awesome. I had gone to do errands that included some elevator rides. Usually those make me dizzy but this time I felt just fine. I walked for hours, carried a kid, drove, got up and down and when I came home I didn't feel like sleeping or laying down. I actually felt like doing the dishes and folding laundry. That is when I noticed that everything looked brighter and closer. The fog was lifting! I felt like I was really in my body, really in the world, not cut off and a prisoner in my brain.

I am now on day 4. I am still only taking half the dose. I am still scared of side effects. If this keeps working like this I will go up to the whole dose in a few days.

My new life consists of taking this med, eating lots of salt and water, even adding salt to my water sometimes, eating lots of meat, keeping meals small but frequent, drinking enough caffeine to help but not enough to cause insomnia, and using my new found freedom to be a better mother. I am praying that this med keep making me feel this good. I don't feel euphoria like with drugs, or just energy like with speed, but just being able to do things without becoming exhausted beyond exhausted, feeling like a part of the world and connected to myself, and seeing the world through eyes not shrouded in fog.

My new life includes hope.

Good Days.

2014-10-13T19:08:00.002-05:00

Good days are hard to come by. It seems like I spend most of my time being tired and in pain. I have to maintain a fine balance between what I eat and what I do to maintain some level of competence and ability. If I let just one thing go, it all falls apart. Sometimes it is out of my control no matter how much self control I had.

I recently got over an infection. I know it was in my uterus but I have no idea what caused it. The doc did not swab or sample the fluid in my enlarged and painful uterus. She sent me home with some strong antibiotics and I muddled trough the next 2 weeks as best I could. I spent quite a bit of that time in my bed trying to sleep. The antibiotics made me dizzy and wreaked havoc on my dysautonomia. 3 days after I finished the meds I felt awful, in pain, a migraine, and I still had abdomen pain. The same as before I took the antibiotics. But now on top of that i also had bad shoulder and arm pain and vision changes. I was scared I hadn't cured the infection and tired of being in so much pain. I went to the hospital. Of course, every test showed that there was nothing wrong. A few days later I started to feel better.

So now I feel better. Today was a good day. It is hard to remember that those happen when you are laid so low for so long. I spent 6 weeks being terribly ill. It was awful. But, here is today. Granted, I used caffeine to help me achieve these ends, but my house is clean, I made dinner, and I managed to sew the patches on my daughter's girl scout vest. I even managed to talk the toddler into wearing underwear, but, alas, I could not talk him into using the toilet. He did help me fold towels and cuddled with me for his afternoon nap. Today was a win. Today I felt like a member of the world, the human race, and my family. I didn't feel like a lump of pain and misery. I wasn't angry at the world. I didn't feel like I was going to be in pain until I die. I didn't feel hopeless. As a matter of fact, I felt hopeful. I might have drank several cups of coffee and even more cups of diet pepsi, but I didn't need any pain medicine, ibuprofen, or anything else. I didn't feel depressed or oppressed, bitter or malcontent, or useless and unwanted.

It is sad that I know it won't last. I try not to sit around and wait for the other shoe to drop but it will happen. I need to write more posts like this, to remind myself, when I am down in the depths, that there are heights as well and they are worth it. I spend too much time wallowing in my despair. I need to remember the good days, to keep me hopeful.

My mom always has nice things to say to me. For some reason she always sounds so optimistic when she talks to me. She is supportive and kind, a friend and a mom, and honest with me. I am so grateful for her. She has what I have. I know she has the EDS because she has the fibro. I know she has the fructose malabsorption because of the gastroparesis and bloating. So I know she feels like I do. I could never figure out how someone who felt like I did, could always have such optimistic supportive things to say. I know her thoughts must get deep like mine, especially when the bad days strike. How is it that she can always be nice to me and I just want to lash out all the time. I remember my childhood. I remember how hard it was for her to raise my brother and me. She is who I want to be like. And on my good days, I feel like I could be.

It is so much easier to be nice and patient when you feel good. It is a far different thing to be nice when you feel like you are dying. When you feel like you are constantly being attacked by your own body you get angry and defensive. You aren't being attacked by some outside force that you can fight. It is all inside. It is all you. It is your body, your muscles, your joints, your nerves, your emotions, and your fears. It all comes together and attacks you from all sides. Flight or fight. You can't fight yourself so you turn around and lash at anything close to you that bothers you in the slightest. You become the most miserable person on the planet. It is a constant struggle to fight to control yourself. It takes energy to remember not to lash out at people. Especially when you are surrounded and can't find any time or space to be alone. It wears on you.

So remember the good days. Take pictures of them and post them in your house. Have pictures of yourself smiling to remind yourself that you can.

OCD, PTSD and the Fear.

2014-09-08T10:17:00.002-05:00

I do everything on purpose.

Not just on purpose as in being mindful.

On purpose because I am afraid. Every day I am afraid. I call it "The Fear". It has a life of it's own. It controls me and everything I do. I don't want it to control me, but the truth is, I need it to control me.

My whole life I have had pain, fatigue, and outright clumsiness. I have EDS.

Everybody has this thing they call proprioception. It is, basically, how your brain knows where your body is in space. It is what gives people graceful movement and the ability to not run into objects. Mine is flawed. I trip over nothing. Literally. It could be the flattest floor ever and I could be barefoot and I would still trip. I could be trying to walk around the door or the pole or the counter and I will run right into it. I could be trying to catch that ball or doing that cartwheel but I will miss the ball and get hit in the head and I will fall during that cartwheel. And get hurt. And then I will bruise and keep hurting and keep aching and whatever joint got hurt will keep hurting and be difficult to use. I am afraid of that pain. Constant (chronic) pain can lead to mental illness.

I remember the first time I ever got hurt. I think it was the Pain that caused the Fear to start. I was less than 2 and had a little riding toy. The head had a point. I bumped into something and fell forward on it. The point jabbed me in the diaphragm. It was so intense that I still, to this day, remember exactly how it felt.

I have EDS. I have an increased sensitivity to pain. Well, to everything. Even the sensation of my clothes on my skin. A breeze that would be refreshing for someone else might be too cold or harsh for me and might actually cause slight physical pain or persistent uncomfortableness. I feel things way more than other people. I can handle a lot of pain though. When you have chronic pain another pain signal is easy to tolerate. Doesn't mean I don't feel it, just that I can ignore it longer. I have a lot of practice. There are some kinds of pain I can't tolerate. Pain in my head. I can not stand pain in my head or my teeth. I WILL cry about that kind of pain. I will beg for pain medicine for that kind of pain. However, pain meds don't work very well for me. I need 2 or 3 times the amount other people do. My body metabolizes the meds too quick or my signal is too great for it. I am not sure. All other medications are too strong and I get too many side effects. My systems are sensitive. Digestive, circulatory, endocrine, neural, etc.

I don't like pain. I don't think many people do. Well, not this kind of pain. This kind of pain is neither fun nor erotic. It is unending, constant, depressing, and tiring. I do everything I can to reduce my pain. I started doing this when I was young. The doctor calls it OCD. I call it Fear.

I only have so much energy every day. I have to parcel it out. If I am not careful nothing will ever get done. I try to stick to a pretty strict schedule and do things methodically. I do everything on purpose. The way I walk down the hallway, one foot in front of the other, slowly, watchfully, so I don't trip. When I cook, I always clean as I go. It is easier and uses less energy to clean as I go instead of doing it all at once later. Doing dishes, folding laundry, vacuuming the floors are all done in a specific way. The way that causes less pain, uses less energy and does the best job. Everything has to be in a certain spot, stacked just right, and in a certain order. That way I don't waste time or energy looking for things, things won't fall in my head, and I won't twist my wrists getting heavy bowls out of a cupboard that is too high.

I don't engage in contact sports. I don't ride bikes, roller skate, or jog. I don't like moving fast at all. Moving fast leads to twists and sprains, or falls and bumps. I hate having so much pain all the time, being afraid of more pain all the time, and constantly having to think about how not to have more pain all the time.

The therapist says it is PTSD (post traumatic stress disorder) because of all the times I have been extremely hurt and injured. They say it OCD (obsessive compulsive disorder) from not feeling like I have any control over my life. I say it is just a survival mechanism and the way I have to live in order to remain sane.

My Dirty Little Secret

2014-06-01T22:39:00.000-05:00

I hurt.

Not just sore muscles or stiff joints.

Despair. Misery. Torture.

And it will never go away. I have to live with it until I die.

Until I die.

I think about dying. I think that it will be a relief.

I hurt so bad that I cry. Deep in my muscles, my joints, my bones. Some days are worse than others. Today is a bad day. All I did was go out with my family and act like a normal person. Now her I am, hiding in my room, an ice pack between my shoulder blades, and tears on my cheeks.

Pain like this will take a toll on someone. On me.

I don't like to talk about it. I don't want to be "the whiner". I feel like it makes me look weak to complain about pain no one can see. So I hide it. I suck it up. And after awhile it eats me up and spits me out.

I get mean and angry. Every ache, every pain makes me feel like I am being attacked. Cornered like a wild animal and I lash out.

Some angry, vile, hateful things come out of my mouth. And then I hate myself. I have plenty to hate myself for. I can not believe some of the things I have said, or screamed, at people.

I can not believe that so many people still actually love me. How have I not scared them away? Why would they put up with me? I would not put up with me. I would have left me a long time ago.

I need help. I need pain relief. But all I get from doctors are new drugs to try. Antidepressants, antianxiety, muscle relaxers, ibuprofen. They make me feel crazy. They don't take away the pain. So they give me new one. I was once on 12 different meds at one time.

I feel hopeless. I am scared to keep trying new pills. I don't want to gain weight, or get bad acne, or go crazy again. I just want relief.

There is nothing out there that can give me complete relief. I will always be like this. Until I die.

The Link Between Fructose Malabsorption and Depression.

2014-04-01T10:57:00.001-05:00

Did you know that what you eat affects your mood? I had been told before that eating too much fructose will cause behavior issues and sadness. I wanted to write about this to get the info out there more.

I started looking around and found very valuable info on tryptophan and serotonin levels. Free fructose that hasn't been absorbed chemically interacts with the tryptophan keeping it from being absorbed as well. Our body uses tryptophan to make serotonin. Serotonin is the happiness chemical out brains need to combat depression. This would explain why SSRIs never worked for me. They are Selective Serotonin Re-uptake Inhibitors. You can't inhibit the re-uptake of a chemical you didn't have in the first place.

I wanted more information so I called my daughter's Gastroenterology clinic. They said "a happy gut makes a happy brain", but they had not heard about the tryptophan and serotonin link.

Found articles:
http://theprimalparent.com/2012/03/31/ibs-depression-skin-fructose-malabsorption/

http://180degreehealth.com/2011/09/causes-of-depression-depression-and-diet/

http://www.ncbi.nlm.nih.gov/pubmed/9620891

So what I get from these articles is this:

Fructose that wasn't absorbed floats free in the gut. One of 2 things will happen. The gut bacteria will eat it and produce gas. And/Or it will chemically react to the tryptophan in the gut preventing its absorption.

Tryptophan is needed to produce serotonin. Serotonin is the chemical that makes you happy. If you are low on serotnonin your body will crave food to fill that need. People then crave sweets, carbs, fruit, etc. These are all foods that people will FM can't digest. This causes more free fructose in the gut.

So this causes a big bad circle with my kid (and me). She is moody and throws fits easy. She does act up at school but by the time she gets home she has large circles under her eyes. She eats stuff she shouldn't have at school and other places. This causes the malabsorption syndrome. She then craves foods to fill her need. She throws a fit because I am only offering chicken, potatoes etc for dinner and all she wants is donuts, cake, or kool aid. High sugar foods. Doesn't eat the food she is allowed. Still does not get the right levels of tryptophan, serotonin does not rise.

I told the GI clinic how much trouble I was having getting the school to limit my daughter's diet. They were not happy and immediately contacted the school. My daughter hates it but she has come home the last 3 school days with no circles under her eyes and in a much better mood.

Sp, people with FM, watch what you eat. It will make you happier.

Depression

2014-03-31T08:56:00.001-05:00

I didn't want to admit it. I denied it's existence. I can't deny it any longer because it has just gotten worse. I am depressed.

Looking back through my posts here I can see that a year ago I posted the same thing. Dd I really go a whole year like that? That makes me feel crazy. Why wouldn't I have gotten some help by now? It's because I am afraid of being put on meds for it. They have sexual side effects and make you gain weight. That would make me more depressed.

Then my best friend died of cancer. Lung cancer. It was awful to watch. My friend slowly disappearing. I couldn't do anything to help. I had these young kids and no one to help me with them so that I could go spend time alone with him. So that I could comfort him. All I could do was visit him, with the kids. I blamed my kids and my husband for that. I wanted to help nurse him and be there for him. It wasn't fair. We had been best friends and family for 17 years.

15 days later, exactly, my grandmother died. I was close to her. She helped raise me, helped me raise my son. It was liking losing my mom. Only I was trying to help my mom who had just lost her mom. I had spent so much time visiting my friend that I hadn't been able to help my mom much in checking on my grandma. And to be honest, I hadn't spent that much time at my friend's but it was all the extra energy I had. There was none left for grandma. She had gotten a UTI, wouldn't take her meds, and it ruined her kidneys. The week between my friend's funeral and Grandma's death in the hospital was the most upsetting week of my life so far. I was so tore up that I couldn't sleep at night.

I bit the bullet. I had to ask for help. I went to the doctor and asked for some help sleeping. I told her how upset I was and how I couldn't sleep. She gave me some lorazepam. I hardly took any. Just enough to get some sleep. When I no longer needed them to sleep, I quit taking them. I didn't want to get hooked on them again. I also did not like how they made me more tired. I can't be more tired. I have stuff to do , kids to feed, beds to make, floors to sweep, dishes to wash. If I get more tired than I already am, my house will get nasty. They take away kids who live in filth. If I was more tired I wouldn't be able to keep the kids up on their homework, teach them their chores, take them to girl scouts, talk to them, make bracelets with them.

I was sleeping now, but I wasn't feeling that much better. I would break down crying thinking about my friend and my grandma. This in turn, brought up more thoughts of things that made me sad. The baby I lost to an ectopic, the fact that I get very little help from the husband, how I don't have the energy to read the kids bedtime stories anymore, etc. I even uttered the words "I should go ask the doctor for meds". I was mad at my husband for not helping, for yelling at the kids, for not cuddling them, for not saying loving things to them. I was mad at myself for the same things but only blaming him.

I thought I was dealing, that it was just normal grief. I was fighting through it. I was mad all the time. I started taking it out on the kids. They have chores to do. Normal chores, pick up the toys, make your bed, put away your laundry, and vacuum your floor. All stuff they can do. But I found myself yelling at them more and having less patience. I found myself talking to them in a way I never wanted to. I knew it was wrong. And then, I spanked them. I didn't beat them or leave marks, but spanking itself is against what I believe. I believe in attachment parenting. I believe in being gentle and supportive, encouraging and loving. And yet, here I was, spanking my kids. I felt awful about it. But still it happened again. Finally, something broke in me. Something finally snapped and I realized that things could not go on like this.

Thanks to some good people on a "Mommy" board I frequent, I was brought back to reality. Dragged back, kicking and screaming. Reality upside my head. Almost violently. It was what I needed. I was in denial. Denial that things were that bad, that I was doing ok, that things were manageable. Because they obviously weren't. I am eternally grateful for that kick in the ass.

So today I leave the house. Today is my intake appt so that I can start up therapy again. I am hopeful today. Hopeful that my family can go back to being happy. I am getting some outside help as well. I would like to see my husband be more loving, cuddly, supportive, and gentle with his kids as well. Maybe then we can all be happy, me included.

That Really Chaps My Hide.

2013-04-23T13:22:00.001-05:00

This is a vent.

I hate it when vegans or vegetarians tell you that being a vegetarian is the only way to be or eat. Or, that if you think at all, or care at all, you would be like them. That thinking people wouldn't be able to kill animals for food and how cruel they are to eat animals. I even read some quote somewhere that said "I think, therefore I am vegan". Does that mean then, that since I am not vegan that I don't think? I am thoughtless and cruel? The people who think their way is the only way really chaps my hide. They are not thinking about other people and maybe they have different needs.

The particular thing about the veganism bothers me the most right now. First, because I used to be a vegetarian. When I was 16 I had a teacher who really meant a lot to me. She was smart and funny, and most of all, nice. She showed me pamphlets from PETA and ate lunch with me. I was a vegetarian for 4 years. I believed that eating animals was cruel and wrong. I didn't want to support the animal killing business in any way so I didn't eat animal products. Eventually, I got tired of feeling weak and sick and slowly added meat back into my diet. I didn't realize it then, but the vegan diet was killing me, starving me of nutrition. I didn't eat a lot of meat. What I did eat was mostly chicken or burger with lots of veggies.

About 2 years ago, I realized why eating vegan hadn't worked for me, and why eating small amounts of meat wasn't working for me either. I had been testing borderline anemic for years. I was low on lots of vitamins, my bad cholesterol and triglycerides way high, and I had lots of chronic pain and inflammation. My children and I all tested positive for Fructose Intolerance, or Fructose Malabsoprtion Syndrome. Fructose and fructans are found in every food except plain meat. I was not absorbing vitamins or nutrients out of most of the food I was eating. I was not absorbing all the stuff I needed to make energy or the happiness chemical that wards off depression. I was not absorbing enough vitamin B6, Iron, or anything else really. I was told that my safe food was meat, spinach, mushrooms, and certain citrus fruits. If I add anything else or eat anything else then it is just for fun because it won't really give me any nutrition. A vegan diet would slowly starve me to death. My children would slowly starve to death. My now 6 year old spent a year looking like a starving Ethiopian child from those send money commercials even though she ate a ton of food all the time. She ate tons of fruit and veggies and hardly any meat. Once we quit feeding her fruits and veggies and made her meals mostly meat she bounced back, regained her muscle and had better behavior.

Since I have changed my diet to be more meat heavy, I have had more energy, more happiness, less fatigue, less pain, less stiffness, and less brain fog. I still have issues from the Ehlers-Danlos, but it is much easier to manage.

Most of this hide chapping comes from my facebook feed. I could probably just turn them off but I actually have other stuff I need to communicate with them about. Unfortunately, I have several friends that feel this way even though they know my family, my children, suffer from this intolerance. It hurts my feelings and angers me. Obviously, because I am writing this post. But, what bothers me most? Why do I let this upset me? Because it is inferring that they are better than me? That I am somehow wrong for choosing to eat meat? That eating meat is selfish? Maybe it is because I am not feeling accepted for my choices. Or respected. I didn't make that choice lightly. I still feel guilty eating meat if I stop to think about it, especially since I can't afford humanely slaughtered animals. I still refuse to eat veal. They are treated so horribly. I won't eat lamb either. They are usually slaughtered when they are still yearlings. We stick to the main ones. Chicken, beef, and pork. I try to imagine that they lived a stress free life and died painlessly. I know it is not true, but I can't do anything about it. I can't afford better stuff and I can't afford to not eat meat.

We eat meat because we have to. We actually do have to eat it. We don't have the choice of being vegan or vegetarian.