For the past two days I have been in hell. Up until now, I have gone weeks and weeks (with the exception of three days) without pain. The last few times I could (almost) pin point the reason.
Now I can only say that the weather does absolutely play a part in flaring up my condition. Two nights ago I lie in bed in tears, unable to move with having just come in from the cold rain. The pain hadn’t been that extreme in a long time and I can’t help but wonder why and do things like blame myself for eating a piece of white bread or some chocolate. So not only am I in bed, where it hurts to lie down or move or breathe, but I am also beating myself up. I convince myself it must be my fault. Basically, torture.
I have arranged it so that no matter where I am in the world I have an arsenal with me to use in situations to make me comfortable. I basically travel with everything I have at home so that I feel prepared. This time isn’t any different. I have tons of meds, heating pads, supplements, but I didn’t know what to do this time around. I finally took a Xanax around 4 am (a larger dose than I normally take) and waited for it to knock me out.. Two hours later it worked.
The next morning (yesterday) I had to take a Tramadol to get out of bed. I don’t like to be in the habit of taking pills –especially painkillers. The thing is, I can feel my body loving them. Sure, they take the pain away but I become very aware of how my body feels as they begin to wear off. It wants more more more. I ignored it this time around but it was hard seeing that the pain was so intense. The last thing I want out of this is to add “I am hooked to painkillers” to my list of issues. Let’s keep the problems to a minimum here.
So today is the first day I am trying to deal with it without the help of any medication. I feel achy. I feel tense and creaky. My joints pop and squeak. I try stretching and doing yoga but my head is so tense that I can barely move.
I try so hard to not be angry at my body for making me feel so awful. Wish me luck I’m hoping I can do today without Tramadol…
I put jeans on for the first time in about six weeks yesterday and it’s confirmed, I’ve definitely gained weight. After many mixed emotions I am generally happy about this because I am feeling so much stronger. I generally feel the best I have in two years.
I think I may have put on about seven pounds. I am almost 110. My body feels different and you can’t see my bones in my chest or ribs so easily anymore. I would like to continue on this road and maintain a healthy weight except for a major problem… anatomically my body doesn’t like the weight.
I am extremely uncomfortable. One of the wires of my pacemaker is hitting a nerve on my diaphragm. I constantly have hiccups after eating (when my stomach expands), and no matter if I walk or sit down I can feel the electrical impulse on my left side. This, in turn makes me a nervous wreck at all times. I hate feeling the pacemaker working. I hate being constantly reminded that my heart is being pumped. It makes me think of my heart constantly and I cannot ignore it. I am nervous to eat.
So what am I to do? Lose weight and be comfortable yet weak and “too thin”? Or just deal with this as the docs tell me I may have to (since it isn’t dangerous they generally do not suggest going in to move the wire).
This combined with the fact that I haven’t been on my “diet” (eating green and clean) has me super anxious. It’s been easy to ignore it since I’ve been away from my routine but this all has the potential to get really complex in a few weeks. What to do?
Having an especially difficult time with my Prednisone lately. These roids are torturing me.
About three weeks ago I started playing with my dosage. I was comfortable at 10 mg but have been trying desperately to get down so I can finally taper off this insane medication.
I lie to my doctor, so he thinks I am at 20 mg (that’s a whole new blog post right there), but I am in fact trying 5 mg now. Giving it my all to stick with it. Even despite the most insane mood swings I’ve ever experienced and the intense bitch that emerges with each dose. The crying, the rage… it’s all too Lifetime for me.
It is so difficult because when you are dealing with drugs that alter your mind (and not in a fun way) you really have no control. No joke. You cannot help what you think or say. I just want it to even out please. I want to get to 0 mg and still have friends and family that speak to me…
Ah, the consequences of this chronic illness just keep on giving.
This makes me cry. Stunning.
My Ticker is so happy here in the simple life.
No matter how much hard work I put into this…
No matter how much I learn about people…
No matter how far I’ve come…
It doesn’t make the day to day any easier. Life is just so hard.
What a realization I’ve had over the past few days. It’s sad to quietly watch things end.
What is there left to eat?
I try and eat fresh veggies and fish, green and clean, and now I learn that even some veggies are bad for my condition? I want to scream!!
Everywhere I turn I am reading about something else that I should stay away from. It is exhausting.
Whenever I change the dose of my prednisone (or, as I like to call it, the Roids), I get crazy roid rage. I have slowly been tapering off of this bully of a drug for a year now and I am at a very difficult point where I cannot seem to get past 10 mg (my highest dose was 60 mg).
The past four days have been hell. For me and for everyone else around me. The steroids turn me into someone completely different. Moody, antsy, depressed… I have hated myself for the past couple of days now. This isn’t me. I don’t like being around people like this. It’s out of my control, these terrible dark moods. I wish i had a punching bag.
To top it off I am having some sort of flare up. For the past day or so my muscles ache so badly. I was in tears all night last night finally getting to bed with some muscle relaxers at 6am. Why? I ask. Why now? I am in this beautiful place, happy, eating fresh food, exercising, taking good care. I look for things to blame. I want so badly for there to be an answer as to why I feel so incredibly awful. I antagonize myself, and search and search until I am convinced I have found an answer…
Today I have myself paranoid that I am eating too many “nightshade vegetables”. I have been eating tons of zucchini, eggplant, peppers, and tomato here because it is so unbelievably fresh and yummy. Straight from the ground to my plate. But, I had heard that people with autoimmune diseases shouldn’t eat these things and I of course, googled it when I began to feel awful.
The truth is, who knows why I feel so horrible right now. I just want it to end. Then I could stop thinking terrible thoughts, and I could stop being scared of what will happen next.
There is just so much. Always thinking about where this illness came from so I can STOP it!
On my mind the past two weeks: Vaccinations.
It’s no secret that this is a highly controversial topic. However, as someone with a “mystery illness” I cannot help but dig around and wonder… was it a vaccine that caused my body to go completely cookoo bannanas?
Some have approached me with this idea before and I’ve never really took the plunge to investigate. Yet, this time around I’ve called mom and asked for my childhood immunizations. I am always hoping there is some sort of explanation for all of this. Will it be this one? Was it something like a Tetanus shot in my teens that started all this? Many (non-traditionalists) think it is possible.
So much energy spent on searching for answers. The great mystery of my life. Everything is a clue but there never seems to be a solid answer.
I have books that look like maps with diagrams I have drawn of timelines when my symptoms started paralleled with timelines of medications taken at any given moment. It is a journal of my body.
I wonder if I will ever figure this out? And would I really care about the cause if I woke up one day completely healed? Why am I so obsessed with finding out? I need something to point to…