Monday, May 11, 2015

The Perfect Storm


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



   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.

Friday, May 8, 2015

Ghosts of my Old Self.



 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.