Of Storms and Peace

Navigating this road called life

Not for Me

The more the Rx works it’s way out of my system, the better I feel. Absolute relief. I can walk better, I can talk better, and I can think better… Which means, I can live better.

While the line between side effects to the new medication and just my body reacting in it’s own way to those side effects seem to be a little bit blurred there is no doubt in my mind that I wasn’t handling it well. I believe I’m making the right choice to discontinue it, but not sure I’m ready to have that discussion with my doctor just yet. The point of the medication was to give me relief from my symptoms. So far, it only made things much much worse.

The first few days on it, I had blanks in my memory. I suddenly was convinced I hadn’t had breakfast and had to work so very hard to think through and finally remember that yes I had. That happened the first two days, the third day I was prepared for it and didn’t forget, but the cognitive dysfunction was constantly there. A struggle to hold my thoughts together. Speech became difficult. The deeper the thought, the harder to get it out. I was constantly drawing blanks, and the speech itself came with great effort. This isn’t something entirely new, but it was much worse than usual and lasted much longer than usual, and was relieved when the medication ran it’s course. Walking in the house was super difficult, walking outside on uneven ground was asking for an accident. I was so unsteady and each step was with jerky movements… It was utterly amazing how that improved as the medicine wore off.

Those were the side effects that made life so much more difficult, take away walking and talking and thinking, and well, yeah, not so great. There were the others, like the fatigue and dizzy spells and tinnitus that maybe I could work through, but all added together wasn’t going so well.

I tried, I was determined to put in a good effort to make it work, but these issues were hard to overcome. And then, my body decided it’d had enough and reacted as it only knows how by shutting down. It’d done this with the baclofen too, and we got through it and past it, that’s why I don’t consider it an actual side effect, but none the less not good. I was tired, I drifted off asleep and woke up because I needed air. Not from the dystonic diaphragm spasm, but as if my body just forgot to take another breath. A few deep breaths and I felt better, but my whole body refused to move. I concentrated on trying to move just a finger, one by one testing them out, and only occasionally would get a twitch in one… This went on for hours. I looked like I was sleeping, but in fact I’d drift off, be jerked awake needing air, and go through it all over again.

After all this, I still was confused as to whether to try to keep pushing through or to give up on the med once and for all. This morning though, now that I can think clearer and feel so much better the answer seems quite obvious. Perhaps maybe now we can enjoy our last day of my husband’s three day weekend, and I can hope to be better able to take care of my dear little ones after he’s had to return to work the rest of this week. I do believe I’d rather deal with the muscle spasms and symptoms of my disorder than to deal with the side effects of the Rx that was supposed to help it. And certainly if it didn’t end up helping it, I don’t want to sacrifice the next few months experimenting to see if it will.

Now I’m off to enjoy the rest of my day. Making the most of having a clear brain and a little more steady gait. And talking, oh what a relief it is to be able to communicate!

“I wonder why you are having such a rough time this morning?”

I was still in bed when my husband was leaving for work this morning. I felt perfectly awful. He rubbed my arm and hit a sore spot and the unexpected pain sent me into full body jerking spasms. “Sorry!” he said as he drew his hand away quickly. Later, as I battled through dystonic twisting that locked my body down and then another spasm to my diaphragm that stopped my breathing long enough to make me desperate for air he rubbed my back in concern… It’s no wonder then that he said “I wonder why you are having such a rough time this morning?”

My reply? “actually I was wondering why I was doing so good last night!” (the evening before I had a few miraculous hours of enough relief from my pain and spasms that I actually felt good enough to clean the fish bowl and bird cage and do a few other things) He thought for just a second and agreed. “yeah, that’s more like it!” he said.

I don’t know when this change happened. For years whenever I had increased symptoms we always questioned why and how, trying to figure out what I’d done to cause them, and what I could do to avoid it in the future. Always. But yesterday, I realized that I was questioning my unexplained good few hours instead. It just seemed so odd to feel that good and to be able to function like I was. There didn’t seem to be a good explanation. I was confused, and I admit I questioned it, but I sure didn’t let that keep me from enjoying it and putting that reprieve to good use!

You would think by now I’d be used to the unpredictability of my symptoms, it’s always been that way. Between the tics (which wax and wane) and the dystonic spasms that used to be relapsing/remitting but now just vary in intensity hour by hour and day by day affecting the whole body, but sometimes affecting a random area more than usual… And then the pain and fatigue, affected by the tics and dystonic spasms, or the weather, or the joint issues…. Not to mention all the other stuff… Yeah, it’s always a party, an unpredictable party going on in my body, and yet I keep finding myself surprised at it.

Someday I might be able to get used to it, the forever changes…. But I am determined no matter what to try to always do my best to enjoy the better moments and live life as fully as I can today… Who knows, maybe with the right mixture of meds I’ll do better in the future, but there is no promise, and I can’t have a do over of today, or the past few years. I have to make the most of it in the moment.

And so, I’m up now. Still feel miserable, but there are children who need me and I need to see how much I can get my body to cooperate for today. I’ve not started the new medication yet. Quite honestly, the list of possible reactions and side effects scare me still knowing how sensitive I seem to be to meds. I plan to start this weekend when I have the promise of another adult being in the house to take care of the children and monitor me if things go south. That’s me. Planning ahead and trying to be prepared. Hopefully this weekend isn’t as all bad as that though. In the mean time, I’m focusing on today. First this morning, then we will deal with this afternoon. And I will try to quit questioning my level of symptoms and focus more on living and loving to the fullest in the moment.

Tired and Scared

I keep reminding myself I’m tired which makes me more emotional, but it’s not helping much. I had my neuro appt today and came away sad and scared. I went in not knowing how I hoped the appointment would go. I knew I’d have to report that my dystonic spasms have increased since last time and didn’t know how that would go over.

Sure enough he paid close attention to that detail and said it was time to try adding another medication. You may remember me saying I was NOT ready for that yet, I’m not ready to deal with a whole new set of side effects. It’s scary knowing how sensitive I can end up being and how long it can take to get through all that. I’m just plain not ready, and yet, I obviously need more help.

I then remind myself that this is good news, that after all these years I finally found a doctor who won’t give up on me, at least not yet. He’s not telling me there’s nothing he can do, instead, he’s doing what he knows how to best, by prescribing the medicines he thinks could help me. I am so grateful, but it doesn’t take away the scary feeling of “here we go again”… I guess I’d better get used to it as Rx seem to be my only choice left to me now… And they are better than me being stuck in bed locked in my body unable to do anything if they do work

Almost 3 Years

I’ve been reflecting almost too deeply the past few days… So many memories, so many different things coming to mind… I’ve been feeling pretty rough trying to recover from having made a trip to the children’s museum with my precious little family. It was worth it, but the extra spasms, the more time stuck in bed makes me more vulnerable to thinking about things and in the end feeling a sense of sadness and finding more grief I need to work through.

This evening it hit me pretty hard when I realized it’s been nearly 3 years since I’d last driven a vehicle. Always before it was a matter of weeks or months that I didn’t feel it was wise to drive and then I could again. But now, it’s been 3 years that I’ve been sick enough I don’t trust my body to safely drive anymore. Between the delayed reactions and the overpowering spasms and my eyes shutting whenever they want for however long they want… It’s been almost three solid years of being sick with no remissions with no indication that there will be one in the foreseeable future.

Used to, my disorder was relapsing/remitting in nature. For over 16 years I would have times where I was nearly symptom free, or they were so mild they were not really a big issue. Looking back now I can see how the relapses slowly got to be longer and more severe, and the remissions shorter… And yet, it was a pattern I could hope for. In fact, specialists assumed that pattern was a given. I was assured a few years ago that my best option was to get counseling to learn how to deal with stress better, but the good news is I’d get better anyway. The thing is though, this time, I didn’t get better. I still don’t understand why she and all the others never let me try the meds I’m on now. I suppose I’ll never get it.

The good thing is, I’m not stuck without any options now. I may not get a chance to have another spontaneous remission, but at least I have someone who is trying to help me manage my symptoms. That’s the best we can do, and much better than what I had before.

It is pretty tough though to realize it’s been almost three years, and the future doesn’t look too promising. It’s something I’m going to have to give myself room to grieve over and work through. I’m anxious though to get back to milking life for all it’s worth in ways I can now though. Tonight I might let myself cry. Tomorrow I will probably be giggling over the antics of my three year old. I’m thankful for the reprieve the present meds have given me to help me be able to enjoy life with my little ones a little better. I must take it a day at a time, and live the life that’s been given me to the fullest.

Discovering Acceptance. Again.

I haven’t written in a little while. I’ve been spending my time trying to grasp what my new normal really is and accept it.

Having a progressive disorder I am constantly trying to find my new normal. It seems once I get used to things being one way I get thrown a curve ball, things change and I have to find my new normal, I have to somehow discover acceptance all over again and focus on the now, somehow hanging onto some form of hope for the future.

The past six months have been a wild ride to say the least. I had progressed so far and so fast it was scary. And then came, the new doctor, the new meds, the hope, the horrible side effects, the starting to feel better, the better control over spasms, lessening side effects, the wild day dreams of getting to be “normal” again, the reality check, the finally settling into what reality is…. It’s been pretty intense.

But where am I now? I’ve finally been on this dose of the new med long enough to see the level to which it works. It does work wonders. It helps a lot. But it has it’s limits. It does help with lessening my current symptoms but it’s not a cure. I really have a rough time if and when I forget a dose. It makes me all the more vigilant that I don’t forget, and still it happens sometimes. When it does, I get really frustrated with myself because it doesn’t just hurt me, but my whole family when I do.

I’m learning to accept all over again what is is what is… I haven’t been able to do half of what I dreamed I could. It’s not just a matter of will power or strengthening my body… The dystonia still has a presence that won’t be forgotten. Occasionally I let myself dream a little, but I am a little more aware that it’s quite possible they will never happen. This might be as good as it gets. And, it’s likely to get worse again.

Occasionally, when my symptoms are persistently worse than they had been since finding relief from this medicine I start to get discouraged and fear creeps in… As fast as I was progressing prior to this medication, how long will it take before it’s not effective enough anymore? I am so not ready to be introducing any more drugs. The last two main ones, that have made a huge difference in both my tic disorder and dystonia were horrible to get used to, it took months and months of scary nasty side effects to get where it was a high enough dose to be effective. I’m not ready to go through that again.

So, where am I now? Some times I dream, sometimes I’m scared, but most of the time, I’m determined to enjoy the gift that has been given me for the here and now. I’m back to taking it a day at a time. Enjoying life as a wife and a mother, doing the best I can around the house and still marveling over what I can do that I couldn’t do a few months ago. Sure, I get discouraged. But I feel like I’ve finally reached some sort of level of acceptance to what reality is for now. Realistically things could get worse, and it could spiral downhill fast. But accepting that helps too.

Facing my Anger: Praying for Healing

I have been thinking about my anger a lot lately. Someone recently called me out on my anger over my past diagnosis, the repeated theory that all my symptoms are being caused by psychological distress and nothing physiological. How that anger and hurt shows itself when I’m speaking to others facing a similar diagnosis. That my anger isn’t always helpful when trying to encourage others. It is true. There is a lot of anger, and it tends to overflow when I hear yet again another person is having all their problems “dismissed” as a psychological thing, when their meds are withheld under that assumption, when they are told they just need counseling, or worse yet, accused of faking.

After what I’ve been through, my anger is justified. My frustration is real. My distrust is understandable. I’ve had whole years of my life stolen from me because of those assumptions and theories. I’m probably much worse now than I would have had to be if things were handled differently. It is likely I will forever have some scarring left over the abuse I was subjected to. I can’t change the past, and I can’t guarantee the future. And yet, somehow for my own sake, I have to let go of what I can. I need healing, not only physically, but emotionally as well.

I don’t know what it will look like, I don’t know how long it will take. I’ve entertained the idea of stepping away, avoiding any means that I might hear of another person struggling like I did with doctors…. But realistically I would have to sequester myself away from civilization to do that… Even if I stayed away from social media I would hear something somewhere else. Besides, I really do have a desire to encourage others, and do what I can to help. But I have been reflective on my methods and realize there is room for change.

I have spent a lot of time praying about it. I need healing. I need to find a healthy way to help. I need to find a healthy way to look forward to the future, without fear, without constant frustration and disappointment. I just realized today how many aspects of my illness I gave up trying to get help for because they were dismissed in times past. I just live with them, and hope that the meds I’m on now will be enough to get me by.

Honestly, if I didn’t need the meds I’m on now I would just rather forget the whole trying to get medical help altogether. And yet, I keep on reminding myself, it really isn’t an “us vs them” thing…. While it sometimes feels like it, many doctors truly are trying to help, and have helped many… I have to change my attitude.

So while I’m still facing physical challenges, and have the likelyhood of my dystonia and whatever else continuing to progress and worsen in the future, I also need healing from the past. The emotional trauma of what I went through over the years trying to find help and being denied one way or another, the anger, the resentment, the hurt, the pain… It’s real. It haunts me, the doubts and fears continue to try to taunt me. I pray for healing and somehow the ability to let go.

Chronic Pain – Please Understand

I read this post this morning and could identify with it. Annie put into words many things I’ve thought and felt over the years. Many of us with chronic pain can relate and wish others could understand. With Annie’s permission, I’m re-posting what she wrote. I hope it encourages others like it did me, and maybe help a few friends who want to understand along the way. Annie says:

Having chronic pain means many things change, and a lot of the changes are invisible.
Unlike having cancer or being hurt in an accident, most people do not understand chronic pain and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand: These are the things that I would like you to understand about me before you judge me:

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me, stuck inside this body. I still worry about work, my family, my friends, and most of the time, I’d still like to hear you talk about yours, too.

Please understand the difference between “happy” and “healthy.” When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or not extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy!” I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome to.

Please understand that being able to stand up for 10 minutes doesn’t necessarily mean that I can stand up for 20 minutes, or an hour. Just because I managed to stand up for 30 minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can’t move. With this one, it gets more confusing every day. It can be like a yo-yo. I never know from day to day how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting “sitting,” “walking,” “thinking,” “concentrating,” “being sociable,” and so on; it applies to everything. That’s what chronic pain does to you.

Please understand that chronic pain is variable. It’s quite possible (and for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying, “But you did it before!” or “Oh, come on, I know you can do this!” If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able to, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise or do some things to “get my mind off of it” may frustrate me to tears, and is not correct. If I was capable of doing some things any or all of the time, don’t you know that I would? I am working with my doctors and I am doing what I am supposed to do. Another statement that hurts is, “You just need to push yourself more, try harder.” Obviously, chronic pain can affect the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can’t be put off or forgotten just because I’m somewhere, or I’m right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It’s definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you, people who are not sick. I need you to visit me when I am too sick to go out. You are my link to the “normalcy” of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I asked a lot from you, and I do thank you for reading. It really does mean a lot.

30 lbs and Counting

If the numbers on my scale can be trusted, I have officially lost more than 30 lbs now!

These last 10 took longer than I had hoped. There were more than a few mornings that I was pretty disgusted with what I saw on the scale, but it inspired me to keep at it. I did keep reminding myself that muscle weighs more than fat. The fact that I was able to work on building some muscle was a good thing! With the help of proper meds I have finally been able to move more and do more things, and that makes a huge difference all around. A good difference for my health and well being, even if it did made the numbers on the scale move down slower. As much as I want my weight to go down, better overall health is the ultimate goal.

I suppose if I had included measurements into my list of ways to track my progress that would have helped on those days the scale refused to show an improvement. Alas however, I decided it would be too much bother, and still really have no desire to do it. So I stick to the scale and celebrate when I see the numbers going down.

I’m still working on customizing how the diet plan works best for me. I have a lot more weight I need to lose, and am determined to do it in such a way I can continue to keep it off. This is a lifetime commitment, not a quick fix.

I would really love to see the next 10 come off a little faster, but I’m thankful for the significant progress I’ve made so far.

Close Call

I’ve been extra careful to make sure I don’t forget my meds, trying to do my best to recover from the consequences of my forgetting earlier.

Yesterday,  Saturday, home alone with the kids while my husband was at work, I dumped the pills from my pill sorter into my hand, gave them my usual quick glance over and popped them into my mouth. Suddenly it dawned on me I had seen two baclofen pills instead of one in the mix and quickly spit it out. “Wow, that was a close call” I thought. I was too busy however to really dwell on it much.

That night I looked at my pills a little more carefully and discovered another med had been doubled. I really must have been distracted when I was filling the pill sorter.

It has fully sunken in now just how bad it would have been had I swallowed that extra baclofen (and so confusing had I not known what had happened). I remember how scary the side effects were when I first started taking it, and how even the slightest increase later would affect me. It took months of misery to carefully work up to this dose. Suddenly doubling it would have caused serious consequences, and I was home alone with my little ones.

I am so relieve I was spared.

For sure I’m going to be even more careful to check the pills and double check them before taking them from now on.

Renewed Beginnings

Just like the weather, life seems to be all about seasons. Outside spring has finally come. It comes with turbulent weather and yet so much hope and beauty is springing up in it’s wake. The grass is getting greener, the trees are starting to leaf out, and the flowers are beginning to bloom. It’s wonderful. A welcome change after a long winter.

I myself seem to be entering a spring season of my life. There are are signs of new beginnings, but not without the storms and uncertainty that accompanies them.

We had a pretty nasty thunderstorm outside last night, hail was beating against the house, and the lightening and thunder didn’t seem to ever stop. It seemed fitting as I had been going through mental, emotional, and physical storms myself. Looking out the window this morning I was struck by how beautiful it looked outside post storm. Everything is so much greener and continues to grow. Not all storms leave beauty behind, some cause devastating damage, but this time around, I have hope that my inner storms will just bring about more growth in me.

I have begun to struggle with guilt… Somehow the guilt now is more than when I was so very sick. I think it came when I realized I will never be able to catch up and make up for all the time lost, time I was too sick to keep up with things. I had a growing sense that I had failed in so many areas, worse than any of it I felt I had failed my children. The inner storm brewed for a while finally breaking out in all it’s fury yesterday. I couldn’t hold it in anymore. I was so tired, and very cranky and frustrated. I realized I needed to let it out, and shared with a few people some of my inner struggles and how guilt is trying to take over. I’m so glad I did because I was encouraged and reminded to keep my perspective.

I have a lot of sorting out to do. Kind of what yard work is like in the spring, picking up sticks, removing the debris of old growth, making room for the new. This is indeed a new season of my life. I’m able to do more, but like any other human being I can’t do it all. I will never be able to totally catch up or make up for all that couldn’t be done while I was so so sick. I’m going to have to come to terms with that. I am going to have to let go of some things, to prioritize how my waking hours are spent…. I don’t know what that will look like, but I do know it will change over time…

Hopefully I can let go of the guilt and get back to doing the best I can and trust it will somehow be enough. I love my little family dearly, and want to make the most of what I can do now that my worse symptoms are better controlled. Speaking of, that was another thing adding to the mess the past few days, my mind was so occupied with other things that I failed to remember to take a few doses of my meds… I paid for it (glad to know they work!) and realized it’s not just for me, but for my family too that I must make sure to faithfully take them.

I really am hoping this is a new season of spring for me and will blossom into a great new beginning. However it turns out.


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