Sunday, December 21, 2014

A huge difference.

   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. 

Saturday, November 29, 2014

One thing after another.

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. 

Thursday, November 13, 2014

Alcohol or other substances.

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. 

Saturday, November 1, 2014


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. 

Monday, October 13, 2014

Good Days.

    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. 

Monday, September 8, 2014

OCD, PTSD and the Fear.

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. 

Sunday, June 1, 2014

My Dirty Little Secret

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. 

Tuesday, April 1, 2014

The Link Between Fructose Malabsorption and Depression.

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:

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. 

Monday, March 31, 2014


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.