Of Storms and Peace

Navigating this road called life

Expanding Horizons

I hardly know what to say. I’ve tried to write this blog post several times over the course of the past few days and always ended up scrapping it. What an incredibly crazy week I had last week! Both utterly exhilarating and amazing, as well as incredibly frustrating and disappointing all in one.

I had finally gotten to the point where I was feeling pretty awesome. The meds were working, the side effects had become bearable, and my injuries from my splat on the floor a few weeks ago were finally getting better. I had energy, my spasms and tics were in submission, I felt like I could (and should) do anything! And I did. I cheerfully did more housework, and gladly went shopping… I was beyond excited about getting to go along when my parents did the grocery run… I couldn’t remember the last time I had done that. I had been so sick for so long we all found it easier for them to get our groceries when they got theirs. The thought of getting to pick out my own produce was wonderful. Indeed that was the highlight of the whole trip.

I went for several days like that. I kept going, pushing myself to new limits because I could and because I want so desperately to build up my stamina and be able to do more “normal people” things. I even let myself get antsy about getting a driver’s license again, wishing I could start the process now, and not have to wait until I see my Neurologist again in 2 months. I reasoned with myself that waiting 2-3 months to be sure I was well enough to safely drive was reasonable. If I had a seizure disorder, wouldn’t I have to be seizure free for 6 months before being allowed to drive again? But it was difficult, patience isn’t my strong suit, and I could almost taste the freedom of being able to drive again.

Family members who know me best were getting concerned and kept warning me not to over do it. They know my patterns, doing too much when I feel good and then crashing afterwards. But I kept pushing. I want to build my stamina, I want to get my life back. There are so very many things I want to do and get done! My limits are no longer as constraining as they once were, I can stand up straighter, walk easier, and function better than I have in oh so long.

It was all too good to be true. My family was right, I should have listened to them. I should have paced my self more. I have no clue what that should have looked like as I don’t want to remain over cautious and never regain my stamina, but I should have been more careful. I crashed, and I crashed hard, and days later, I’ve still not fully recovered. I am mad at myself, and confused, and frustrated, and wonder, will I ever get to live a somewhat normal life again? I suppose I reached too far, expected too much, dreamed too big. Perhaps, I will never be well enough to safely drive. I keep apologizing for it, because it’s my fault I’m now so exhausted and in so much pain, and spasming so much.

My husband said something that really stuck with me. I was apologizing for doing too much too soon and he gently reminded me that everyone has their limits. It got me to thinking, no matter how well the meds work I still am human and will always have limits. Probably always more than a healthy person would, but still. I just need to figure out what those limits are. Thankfully this time around finding my new normal is with expanding horizons. And that is pretty awesome. I don’t know how many more days it will take for me to recover. I’m trying to be a bit more cautious and take things slower, and to accept I have more limitations than I would have hoped. I still have dystonia after all.

Wonderfully Amazing

Whew, am I ever tired, so ready to go to bed early, but it’s a good kind of tired. A satisfying exhaustion. Today was an awesome day. Simply amazing.

Before I tell about the most wonderful part of today, I should begin by saying I figured out why my dystonia was acting out… It all clicked in my befuddled mind almost as soon as I had published my last post. A glance at the calender would have put my mind at ease… That monthly hormonal cycle gets me every time… Just a few months ago this would have put me in bed in dystonic storm… The meds are working, keeping the dystonia to a minimum of uncomfortable pulling and twisting, enough to be a little frustrated, but not enough to land me in bed. What a relief to realize what was causing it, giving me hope that I can push through this and be better again soon.

With that in the back of my mind I’ve been more hopeful and taking things a day at a time, willing to push myself just a little more to see what I am capable of doing. Determined to enjoy what life has to offer in the moment.

Today was another trip to the chiropractor and a few errands, and nap time for me and the kids, and then, Dad came over for a few hours. The weather was absolutely beautiful, it would be a crime to stay indoors, and so, we all went outside. The kids rode their tricycles and scooters in the driveway while Dad and I started in on the rose bush and front flower bed.

It was incredible. I had laid my cane aside to work, because, um, well, that thing gets in the way and is a pain when trying to do stuff that needs both my hands for. We worked together pruning and pulling out dead stuff as the sun shown on our backs and a cool breeze blew past. It was such an awesome feeling to be able to be dealing with plants and soil again. Just the act of slipping on my old familiar gloves brought back a flood of memories of the hours and hours I used to spend out in the garden so many years ago, fueling dreams of what it might be like in the future…

And then, like an engine that has seen better days and starts sputtering and shuddering and balking at running like it should my body started doing the same, just like that. I started twitching and spasming, and suddenly felt oh so tired! I quit what I was doing and quickly made it safely to the chair and sat down and wrestled with my feelings. I didn’t know if I should be proud of what I had been able to accomplish or be discouraged that my body gave out on me so soon. My stamina is just so incredibly low. I sat there watching my children play and my Dad work and felt guilty, and wondered what the passers by though of the lazy woman sitting in a big comfy rolling desk chair.

I have to learn not to wonder or be bothered by what other people must think. I had every reason to be proud of what I had been able to do. And decided to dwell on the fact that this afternoon had been wonderfully amazing! I mean really! I got to actually do some yard work, and then, when I did have to take a break, I still managed to stay outside and enjoy the fresh air a bit longer before having to go in! As bad as I was a few months ago, this is incredible progress! I even managed to recharge enough to enjoy an evening of popcorn and a movie as a family tonight with my husband and dear little children. Amazing indeed.

Absolutely, wonderfully amazing.

One Step Forward, Two Steps Back

It’s hard not to be discouraged. I had plans, I had dreams, and this wasn’t part of it. The dystonia is trying to take over again, I feel it pulling trying to do it’s thing. I don’t know why. I didn’t miss a dose of meds. Maybe it’s because I’ve not gotten enough sleep? Or maybe I’m pushing myself too hard? Or maybe just maybe this stuffy nose isn’t just from dry air but perhaps I’m coming down with a virus?

It is taking a lot of mental strength not to dwell on it… The pulling twisting muscles do a good job of reminding me constantly that something is not right. But I don’t want to succumb to being disheartened and lose hope of getting stronger and getting to do more things and hopefully one day getting my driver’s license back… I have to still hope. Better yet, I have a lot to be thankful for in the here and now.

So, when my thoughts wander to the why’s and how’s I purposely steer it back to what a wonderful time I have been having making memories with my children here at home, working and playing together. I don’t know what the future holds (does anybody, really?) but I do have today, and I’m determined to make the most of it… Even if it’s more difficult than it was yesterday.

Speaking of, I’ve gotta go… My 6 year old just came with a request “Momma, can you help with my piano lessons?” that I can do, and happily!

Daydreaming

I’m starting to feel better. The injuries have healed enough they are not flairing the dystonia like it had, and my side effects from the prescriptions seem to be dwindling day by day. It’s exciting to see how much better I am becoming. I missed my noon dose a few times this week, and was amazed at how the old spasms crept back. I hadn’t noticed until then just how straight my back is, and how often my leg chooses to behave now. Utterly amazing. It was worth missing my meds just to see how much they truly are helping!

I’m taking more and more of my old life back. I’m able to do more around the house and with my children than I have for so long I can’t remember when. It’s giving me hope to dream for a better future. I’m even starting to revel in the idea of getting my driver’s license again. Oh the freedoms and worlds of possibilities that would give me! I’m trying so hard not to let myself get carried away though. Honestly, as good as I am now I would have considered a bad day back then, a day when I wouldn’t dare risk driving when I still had my license… But, I have hope that maybe that will change!

The part of my brain that finds joy in planning and scheming is busy coming up with ideas how to achieve greater success and ultimately gain more independence. I’ve got to get my stamina up, and try my best to lower my chemical sensitivities since that can keep me from going places and doing things. And I have plenty of ideas. Hopefully my body will agree to follow along and behave itself! I have mini goals and bigger goals all with the ultimate goal of freedom! =)

As hopeful as I am, and all the daydreaming I’ve been doing, I still am a tiny bit cautious… I know I’m not cured and I still am at risk for the dystonia to keep progressing, But it is so worth trying and working toward being better and doing more if I can while I can!

Spring is finally in the air, I’ve lost enough weight all my “skiny” clothes that I couldn’t bear to part with finally fit again. I’m ready for new beginnings, and hopeful that this is the start of only better things to come!

Triggers: Pain

There is chronic pain, that pain I’m somewhat used to. But then, there is pain from injury or severe spasms, and that type seems to be one of my biggest triggers to make my dystonia worse. I have other triggers, but nothing quite so much as this.

The past few weeks have been quite revealing. I struggled with depression and frustration and mental distress over some things, but as usual it didn’t make a change in my movement disorder symptoms. In fact, the medication I am on actually was helping me be able to do things I’d not been able to do much of for months… It would have been pretty exciting if I’d not been depressed over other things.

And then, I fell.

It wasn’t just a tumble. It was an all out splat. I had heard the youngest two getting into a nasty fight and without thinking I took off running and my leg slipped and I fell down hard. I jumped back up and went and dealt with the children… It took some time for the adrenalin and the shock to wear off for me to feel the full effects of what had just happened. I was happy there were obviously no broken bones or a concussion. Actually there was no bruising either. But my back and neck and shoulders and elbows and wrists and knees, and… Well yeah, just about everything hurt from the impact. I already have chronic joint issues, and the baclofen (muscle relaxer for the dystonia) makes them even more unstable and susceptible to injury than ever.

Nearly a week and two trips to the chiropractor later I’m still in incredible amounts of pain. I really did a number on my sacrum, but just about everything else still hurts a lot as well. It’s been a daily fight with the dystonia too. The pain has made it act up in ways it hasn’t for weeks. The spasms are taking over, and I’m doing everything I can to try to keep them from going into full blown storm.

With my body on high alert from the pain and dystonic spasms my sensory triggers are increased. Sudden noise (as children are wont to make) is just as painful as if someone bumped into me. The startle from a sudden loud noise is like a bolt of electricity shooting through me causing pain and in turn causing more spasms. I have gone for days wanting nothing more than to curl up in quiet trying to will the pain away hoping to heal quickly.

The injury has been a reality check. A reminder that it doesn’t take much to make the dystonia take over again. I’m not cured, I’m just holding some of the symptoms back with medication. A reminder that the medicine that I use to help my dystonia puts my other conditions at risk. Accidents happen, but I need to be more cautious not to take unnecessary risks. It would probably be a good idea to focus more on the connective tissue condition, and see what can be done to help that get better, if there is anything.

The good news is, if past history says anything, once I heal from this latest injury my dystonia will calm down and be more manageable again. In addition to that, some of the things that were causing mental distress have been resolved, and others are not as important as they were. Trying to get better has shifted my focus in a good way and the depression is gone again. I have hope that there are better days ahead, if I can just let these injuries heal.

Looking Ahead by Looking Behind

One thing about me, once my mind gets on something it’s hard to let it go and think about other things. If I have a situation that needs a solution I’m doggedly researching and figuring and trying to make something work. Seems like there are several such situations going on at once right now, and I kept finding myself running into road blocks. I keep thinking I must be missing something, or that there has to be another way. I’ve prayed, I’ve thought, I’ve researched, I talked, I’ve cried, I’ve prayed some more. Some of it is my responsibility to keep on it and figure out a solution, other things I probably should let go, or at least put on the back burner for a while but it’s hard.

I know, without going into details it leaves it all kinda vague… Part of the reason why I’ve tried to write this post over and over again and failed. But, I know it helps to “blog it out” as I say, and I know it will help me to write about it even if I can’t go into specifics. So here I am, attempting to write again.

The good news (sort of) is I’ve been so distracted the past few days by pain from injuries from my latest splat on the floor, and the inevitable increase in dystonic spasms as a result of that pain that I’ve not been so obsessed with the other stuff that has been plaguing my mind. It’s still there, just not as urgent, seeing as how my focus now is just getting through the present hour not how to fix things for next week or the years to come.

One thing though that has not been lost upon me is how while I was wrestling with all these things I was reminded of a big turning point in our lives a few years ago. Something someone shared a little while ago was so incredibly similar to what happened back then that it got me thinking about it. I had been alone with the children when I started not feeling well, I think I may have gone to the kitchen to get a drink, or perhaps it was just to get my phone… I desperately clung to the counter as my legs began to give out trying to call my husband on the phone as he was away from home. I fell sliding down the front of the cabinets into a twisted heap on the floor where I was having a dystonic storm that was affecting my ability to breathe. Once my husband finally arrived he found me laying there twisted and crying physically unable to get up or to take care of the little children. Eventually he was able to help me to the couch where I stayed until I recovered.

It was then we knew we couldn’t do this on our own any more. He couldn’t work and take care of me, and the children… It was then we started really seriously talking about moving “back home” to be near family to have more help. It was an idea that I’d thought about some before for other reasons, but this was indeed the push we needed to be serious about it and make it happen.

It was a good decision. Not everything turned out the way we imagined, but there is no denying it has been the best choice for us on so many levels. I still miss our old life though. We were happy living in a place where we had chosen. We loved the community, the Church, husband’s job… We miss it all. I was just telling Mom that the other day and she reminded me that even if we hadn’t moved I still would have lost a lot, like my ability to drive or go places or…. The list is long… I lost my health and the move didn’t take that away from me. I need to quit blaming the move for my sense of loss because truly, if we’d stayed so much would still be different, and much more difficult since family wouldn’t be close by…

So, all that to say, no matter what happens in the future, I have to trust it will work out somehow. The things that are happening right now may be preparing us for the times ahead. For me to be at peace about it all though, I need to let go and trust God to help us through even the most impossible of situations. And in the mean time, focus on getting healed up from this injury, and dream of spring coming soon!

Progress: Finally in the Right Direction

There is no denying it, now that I am at the target dosage I am actually seeing some real benefit from the Baclofen. That’s a big deal seeing as how for the past few years I have only continued to become progressively worse.

I looked at the calendar this morning, and if I calculated right it has been nearly 3 weeks since I have been stuck in bed with dystonic spasms crippling me so badly I couldn’t walk. That is a huge deal. I had gotten to the point where I would become bedridden every few days, whether it was just my back and legs terribly twisted up and in excruciating pain or my whole body in lock down.

I haven’t even had to use the extra med the doctor said I could use if that happened again. This is all because the baclofen is making that big of a difference (finally!). I know I’m not guaranteed that this will stay this way forever, but 3 weeks is worthy of celebration!!

I’m able to walk better around the house. I’m able to do a few extra mundane chores. I actually went in the store to pick up a few items a couple different times without the safety of my wheelchair, and managed ok using the cart as a walker. I’m getting glimpses of maybe perhaps getting some of my life back. There are still dystonic spasms, and well tics too for that matter, but it’s all dulled and and not near as severe as it was.

I actually let myself dream a little of being able to function somewhat normally again. What if I could drive again? What a wonderful world of opportunity and freedom that would open up!! But I know that this isn’t a cure (oh a cure would be so wonderful!) and that while it works ok now doesn’t mean it will if my disorder decides to continue to progress as it has been wont to do. And there are trade offs, major trade offs for me to use baclofen and see the results I’m finally seeing.

I’m still tired all the time, and dizzy. I may be walking better because I’m not as twisted up, but I’m staggering around constantly catching myself so I don’t fall and so unsteady. My joints hurt more, and slip in and out of place easier, all because my muscle strength is greatly reduced by the medication. I feel like I’m in a fog and am having a harder time concentrating. Bigger life decisions (of which need to be made at present) seem too overwhelming. Details are too much and I find myself discouraged and even crying over stuff that didn’t used to be a big deal. I keep hoping the side effects will dwindle a little bit more over time, but as each day passes become more frustrated that they don’t seem to be going away like I’d hoped. How can I get my life back if this is the trade off? I’m struggling to find what my new normal is supposed to look like.

But in the midst of all the frustration and disappointment, I keep reminding myself of all the benefits and the positives. Today’s exercise is writing this blog post. To put it all out on paper to see just how good the progress has been. It is wonderful, truly. It is an answer to all my prayers for finally getting the help I truly needed.

20 lbs: Bitter Sweet Victory

I think it is finally safe to say I have officially lost over 20 lbs now since November. That mile marker is significant, but ends up being a bitter sweet victory. It depends on the day just how bitter or sweet it is. LOL!

I made the goal I had for myself. Losing 20 lbs before I had to retest my sugars. I just had that done yesterday. I’m so so hoping that the results will show a difference. I worked super hard for this. Super hard. It’s a daily fight. I had days of being discouraged when the scale didn’t budge, or even went up. I’ve had weeks where all I was doing was trying to lose the extra pound or two I suddenly gained. I get frustrated and grumpy over the fact that I have to feel somewhat hungry all the time if I’m going to succeed. I’m relying totally on diet at this point because I’ve not been physically up to exercising. It takes a lot of pure discipline, but I did it!

My main goal and biggest hope is to reverse the insulin resistance, avoid becoming diabetic anywhere in the near future, and well, get down to a healthier weight in the process. Losing weight/eating healthier doesn’t cure anything else. Not the movement disorders, and not even the joint pain. (I struggled with my joints long before I put all this weight on) In fact, between the weather and strong muscle relaxers I’m on for my dystonia my joints are in so much more pain than they were before. I’m so hoping I can figure out a way to help with that, but that’s a whole other subject. The insulin resistance isn’t something I can feel or tell a difference. I’m hoping I’m doing a good enough job, but only blood tests will tell us if I am.

Weight wise I’m at that awkward stage where nothing fits right, and yet I don’t feel it’s worth spending money getting new things since I still have way more I need to lose and those will only be too big all too soon. Maybe I should dig around and see if I have any of my “skinny clothes” left yet, I might be pleasantly surprised. Good news is, a few people are finally starting to notice I’ve lost some which feels good. Hey, maybe I should allow myself to buy one new outfit to help boost my morale.

The last few months have felt like a constant battle and struggle just to survive day to day, between trying to lose weight and trying to increase the dosages of baclofen and dealing with the miserable side effects. I’m tired and super super cranky. I’m hoping though that I’ve turned a corner. I now take enough baclofen to feel a difference, it’s finally actually holding back some of my more major spasms, and now that I’ve stopped increasing my body is starting to get used to it.

I have a long long ways to go yet. However the 20 lb point is where I can finally turn a corner. Part of me doesn’t feel it’s such a victory because this weight I gained post babies. The weight I put on when the dystonia started getting worse again and I couldn’t do as much physically without triggering severe symptoms. It makes me angry that I put on so much weight. But on the other hand, this is awesome. I now can put that all behind me. Going forward I’m working on the stuff I gained during pregnancies, and beyond. That is exciting.

Pushing through side effects

It’s been a long few months of just starting to get used to my dose of baclofen only to add another 5 mg and struggle all over again with the miserable side effects. I kept pushing myself to stick with it, reminding myself that other meds have worse side effects, and that I struggled at first with another med I’m on but once my body got a chance to get used to it I was fine. It’s been difficult, it’s affected my mood being so miserable with the side effects, but I kept pushing myself. Little bit by little bit I have increased until I only had 5 mg left to go.

This morning I opened my pill sorter and saw that I had randomly chosen today as the day to add that final increase. I had a short debate in my mind whether to take it and thought why not??? It has been about a week since the last time I had increased, it’s about time to do it again I figured. (I totally failed to remember that I’m supposed to be hosting a birthday party tomorrow night) I took it, and was please that this was my final increase. Hopefully my body will finally have a chance to adjust to it. We are seeing some improvements with these higher doses. I was hopeful that this final 5mg would put me in a more manageable place with my dystonia.

By mid morning I was dragging, the exhaustion was kicking in. I was just too tired to fix lunch, barely had energy to eat it in bed. Once my noon dose kicked in I was unable to keep my eyes open anymore from the major fatigue. I had no choice but to let myself doze off… But as I did, the old familiar feelings of dizzy spells or tingling or feeling like I was going to fall (I have no clue how to describe it) started in, and then the awful feeling of suffocating and having to open my mouth and gasp for air would rouse me enough for the whole thing to start all over… This has happened many times before, only to get a little better once I got used to the new dosage… This time around seemed a bit more severe though, and then was the new symptom… Seeing weird shapes of light with rings of color flashing at me to disappear and come again as a different shape.

I was so sick I considered calling my husband, and thought maybe it was time to go to ER. But the truth was, I was too far out of it to do anything about it and finally mercifully drifted off to sleep… I had crazy dreams, but at least I wasn’t gasping for air anymore.

Once I awoke I felt like jello, and just plain awful. I’m mad at myself for choosing to do this now right before my son’s party, but hoping my body will decide to adjust. I’m so hoping that now that this long drawn out phase of increasing is over that I can start feeling better. I’m hoping that if there are any long term side effect that they are tolerable. In the mean time, I’m thankful for the help I have this afternoon as I’m stuck in bed with profound weakness. All in hopes that we can help keep the dystonia under a little better control.

Don’t Give Up

I admit I was angry when I listened to my phone message the other day. The psychiatrist office was finally calling me to see if I still needed their services nearly 5 whole months after I had been referred to them. They had led me on and then left me hanging, and then didn’t get back to me for months. I was in very bad shape physically when I had been referred to them. My movement disorder had been deemed a psychological issue and supposedly only they could really help. Five months is a long time. A really long time. A lot can happen in that amount of time. People could commit suicide in that amount of time thinking no one cared or were willing to help.

Thankfully for me, that amount of time was used differently. I took all the delays and dead ends as a sign to seek a second opinion from the Neurologist my primary doctor had recommended. I wasn’t sure I wanted to. I was getting so weary of all it took to see doctor after doctor. I know so many people with dystonia end up having to see many different doctors before finally finding someone who will actually treat them. I didn’t think I had it in me to see too many more. And yet, my body kept getting worse, and my doctor really thought this Neurologist would take a fresh new perspective and help. It was kind of a desperate last attempt.

Yesterday was my 4th visit to that Neurologist. I always go there nervous that it won’t work out and then I come home amazed at how well it went. He is not too busy to help me. He has been having me come frequently to carefully monitor my progress. I’m being listened to, my concerns validated. I’ve never been given any reason to think that he is searching for a psychological cause (although I keep expecting it to happen). He is being patient with me and all my side effects, giving me the time I need to adjust to the new medication he introduced without rushing things.

Having seen him that many times I’m becoming more comfortable communicating with him and learning how to keep things to the point and get in what is important (I’m much better at blogging long posts than verbally communicating in a doctor’s office). I was able to tell him about how I’m still having severe symptoms (like what I wrote about the other day) and he suggested a combination of meds to use specifically for those times. His game plan and suggestions are always what I hoped for and more (having an awesome support system amongst those who have dystonia I have the advantage of learning about treatments before he suggests them) All I have to do is describe my symptoms and right away he has answers that make sense.

“THIS is what it is supposed to be like” I keep telling myself. I find myself wondering why it took so long to find a doctor like him. I wish I had seen him a few years ago, saving myself all the heartache that I’ve gone through in the past. And yet, at the same time I realize that if I’d not gone through all that I certainly wouldn’t know how good I have it now.

I am so relieved I was directed to this doctor when I was. I think it was nothing short of divine intervention. My desperate prayers answered. I was truly to the point of giving up hope of ever getting the help I so desperately needed. I admit I’m still nervous looking forward, and I still have to remind myself there is no miracle cure, I’m not just going to get my life back. Hopefully however I can live a little more comfortably than I have been. Hopefully this relationship with this doctor will continue to be as good as it has started for a long time and I won’t have to think about starting all over again.

I can now say, it was worth it to not give up. I still remember the tears that flowed when I thought I’d never see this sort of medical care. But here I am. It happened. And I’m still in awe, and so grateful.

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