Of Storms and Peace

Navigating this road called life

Afterwards, A Recovery Journey

As many of us with chronic illnesses well know, it is inevitable we will pay for over doing it… When we do something extra we can count on needing time to recover afterwards too. This is the case for me with my conditions, and especially with my generalized dystonia…

Ten days. It took ten days to even feel like I was beginning to recover from our 2 days away from home on our trip out of state. Granted, I kept trying to do things when I could during that time. I suppose if I’d strictly rested I might have recovered a little quicker, but I have a family that needs cared for, and life doesn’t stop just for me to recover every time I over do it. It seems lately it takes less and less to over do, but of course a trip like that was guaranteed to be a bit much.

I had expected increased spasms and tics, and my legs and body being temperamental and even less cooperative than usual… I forgot to factor in pain levels increasing, but it made sense why I hurt so badly. The day after we got home symptoms increased as the adrenalin from the excitement of the trip slowly drained away… Since I knew it would happen, it was actually almost fascinating to feel the phenomena as it occurred.

We all were prepared for it. My family was ready to pitch in and help if I needed it, which I did part of the time. I had my moments where I was stuck in bed unable to walk, and at times not even able to talk well either…I used the wheelchair more than I have for months. When I was able to walk my legs were not very dependable. It was hard to do even the smallest basic things. Even then, and even though it took ten whole days before I started feeling like I was starting to be more like my “normal” self I still kept happily saying it was worth it to go on that trip! I will never regret having gone. Seeing those dear people we’d not seen for 3 years, going back home to where we used to live before my deteriorating condition forced us to move. I am so glad we were able to go, and just thankful I didn’t have to be stuck in bed or need total care while we were gone.

Once I started feeling a bit more like my old self I switched from survival mode to trying to get a few things done.. (there is always so much needing attention!) I supposed I over did it yesterday, trying to help some outside pulling a few vines and weeds… You would have thought I’d worked hard all day out there the way I felt. Amazingly enough, other than being a little bit sore still, I felt pretty good this morning. My dystonic spasms and other symptoms were behaving in a more moderate way… That’s why I was taken by surprise by what happened next…

I was taking a bath and laid back to rinse my hair, water was low so I’d left the faucet running. Then my legs locked into spasm and were useless to me and the rest of the body began to follow suit. I laid there with the water rising not knowing if I could get out and had a few moments of terror envisioning myself drowning that way, my body holding me under as the water rose… the thought of drowning fully conscious was horrifying. “I do NOT want to die this way!” was my next thought as the adrenaline came to my rescue giving myself enough strength to use my elbows to drag my uncooperative body back and up til my head was safely on the ledge of the tub and finally was able to use the heel of my better leg to knock the plug switch to off… have been a bit sore and shook up since, but thankful! I just never know when such things will get scary, they can come when it’s least expected.

So maybe I pushed it a little to far to soon… It’s been two weeks since our trip, I’m not quite fully recovered yet, I guess, but very close… At least, near to where we were before, back to the unpredictable ups and downs dystonia has to offer. Pacing myself is so important, but sometimes it’s worth the price to do a little extra. Hopefully using the wheelchair for the little outing planned for today will minimize recovery time… Maybe enough for me to get to go out again tomorrow, but we’ll see!

Special Request

September is coming up, the month for dystonia awareness. So much has changed in a year! Last year I was still desperate to be heard, to find someone who would take my case and offer a treatment plan to ease my suffering. I had just again been told my best bet was stress management and maybe add some antidepressant… I put much of my focus and energy into helping with the dystonia awareness campaigns, I shared many other peoples stories here, as well as my own, I begged people to sign the petition, and joined in other efforts as well on various social media sites. (you can find the blog posts and stories in the archives below under September 2014)

This year, I have a doctor who is working hard to insure I have a treatment plan that actually works for my needs and help suppress symptoms. I am blessed to finally be here after all these years. I’ve shifted my focus to trying to get the most out of these years of having little ones at home (I did that before, but now that the urgency of finding someone to treat me is gone I can do it with a whole new perspective). I need the break and I am still trying to figure out how to live life without letting my disabling disorder dominate every aspect of it.

I will not be able to join in this year with spending a lot of time and energy on the awareness effort. I am thankful for the many people who are. We need it. There are many who still need better care. I still need it, because I will continue to need care in the future…

I do not plan to write a whole series of blog posts this year. But for just today I’m back with one special request from anyone who may read this to go to this link and sign the petition to the white house to officially make September Dystonia awareness month. Yes, I asked everyone to sign one last year… We were encouraged by how many took the time to sign but it fell short of enough signatures to be heard. They have set it up again this year, and have reason to hope that we will get enough signatures this time around. We need 100,000 signatures by September 24th. With your help, we can do this!

From the petition: “Despite being the third most common movement disorder, most have never heard of dystonia. Affecting an estimated 500,000 people in North America, dystonia causes the brain to send improper signals to muscles, resulting in awkward, often painful, movements and postures. Dystonia affects people of all ages and can make it difficult to perform even simple tasks like walking, talking, eating, drinking, and even breathing. There is currently no cure for dystonia and it is not unusual for people to wait years to decades for a diagnosis. Having an officially recognized awareness month will bring much needed attention to this disorder and hopefully lead to prompter diagnoses, better treatments, and some day a cure. Please take a minute to add your signature. You could be changing someone’s life.”

Here is the link. All that is required to have your signature count is your name and email address, click the “sign now” button, and then once you receive your email for verification click on the link that says “confirm your signature by clicking here” and that is all. Thank you so very very much from all of us.



I’ll admit its been really hard to shift from writing in this blog… I depended on it for therapy to work through things and to help people understand what I’m really going through.. what many of us  with dystonia or other chronic illnesses go through… I actually wrote a number of posts to stop the incessant thoughts that were swirling in my head but never finished them because I had no place to post them…
I wondered if it was healthy to just quit writing about it, I even reevaluated my reasons for why I chose to stop…. and yet, I stuck with it… I put my creative energy back into trying to get the photo albums caught up, because it’s super important to me for the kids to have those memories saved…

I admit I feel a slight twinge of guilt with dystonia awareness month coming up that I don’t plan or want to jump in and participate fully like I did last year. I admit, I have been struggling physically lately, I was so sure it as because I over did it, and because I caught a slight virus, but there is that nagging worry with the realization that this could be more progression… maybe my meds won’t be able to keep up as much anymore… who knows if we will find another that will help… this reprieve was a blessing, but it’s likely I’m on borrowed time… which is why I’m so glad I’m trying to shift my focus in my writing or what I spend my time on… making even more memories with the children and preserving said memories…

As time passes I’m finding it easier, I’m not as desperate to “blog it out” when yet another health related thing comes up, instead able to shift my focus… all in all, this has been a good change, and I’m glad I stuck with it.

Time to Say Goodbye

My mind has been working so much better the past few days. Well, at least it’s back to the level of forgetfulness and word searching I had grown accustomed to and have learned to work with. LOL! I’m thinking perhaps I was still recovering from the affects of the medication trial that really did me in and also, the blood pressure drops surely played a role too… Who knows, it may be that my moments of clarity right now may be just a reprieve before more changes, but whatever the case I’ll take it gladly!

Anyways, I wanted to write to say I have done a lot of soul searching lately and have come to the conclusion that it is time for me to move on and put my passion for writing to other uses.

This blog served a multi purpose, it was to help me work through my illness and the struggle with trying to find the medical help I needed. It was for advocacy, trying to get our story out there so more people knew about dystonia trying to take more of the mystery out of it and hopefully helping it become faster recognized and more easily diagnosed. To be a living example of how diverse we can be. It was to share with friends who cared and really wanted to know how I was doing. And it was to encourage others who were struggling with chronic and debilitating illnesses… I think for the most part it served most of those hoped for goals well, if not always, at least in some moments of time.

The thing is though, this subject isn’t all of who I am, or a full picture of what my life really is like. It dwells on the aspect of my illness, and that is a huge thing I have to deal with, but it’s not who I am or what I want to focus on all the time, or what I want to be the focus of every piece I write about. At present I am under the care of a neurologist who is doing his best to help me, so my frustration and urgency in trying to find help has been relieved for now. I do understand that advocacy is still important, and I’m not saying I won’t help from time to time but I want to change the main focus of my writing for now. In my real life I’m purposing to focus on the little things and moments shared with my children, they are my priority now, they won’t be little forever and I want to make the most of it, and I want my writing to reflect that.

I have friends from far away I want to keep up with, and locally at present I am not able to socialize much because of my chemical sensitivities and my dystonia etc combined… Therefore, I am in process of launching a new blog with a more balanced view of snippets from my life, with a variety of my thoughts, and a glimpse of moments shared with my little ones… I’m not sure exactly how it will all actually end up turning out… That’s the beauty of a blog. I haven’t decided yet if I will make it public or keep it private – invitation only, but I am getting pretty excited about it!!

I don’t know what I’m going to do with this blog here. I don’t know if I’ll keep it to add an occasional rare post, or close it down entirely… I want to thank each of you for reading and for your support… I probably wouldn’t have kept writing as long as I did without it!
Thank you!

I’m ready for a new phase, to move on. So, for now, I must say this is my farewell post.

To More than Just Survive

Summer. One month down. Two more months to go. We have settled down in a more or less predictable routine, except for those days I’m feeling really rotten and then it all goes by the wayside. I guess we have two routines. One for when Mommy is feeling well enough to keep things moving and one for when Mommy just can’t.

I had dreams of how the summer would go. Reality, well, is more realistic. LOL! We have had rain. Lots and lots of rain. The children have been cooped up inside more than any of us would like. But we got creative. The two main favorites being the sets of lego blocks I got them (was supposed to be for Christmas, but, they needed something to keep them busy now) and playing with play-doh (never at the same time!)… I am constantly finding myself impressed by their imaginations and designs. The things they have come up with are impressive!

As for me, it seems more than anything I’ve just been in constant battle with this body of mine… The weather affecting pain levels, the constant and increasing tug of war with the dystonic muscle spasms and tics, brain in and out of clarity, and the blood pressure dropping enough to make me dizzy and oh so tired… I’ve had to rest more than I’d like, but I have been so relieved to see the children take it all in stride, and for the most part behave so well that we have managed to continue with it being just us without extra caregivers having to come. What a difference one year makes. There are no tiny toddlers needing someone to chase after them, the older ones are able to do more to help out, even all proud and excited to fix a meal on their own on the rare occasion I needed them to.

Admittedly many days I feel like we are barely surviving, the household chores seem to multiply faster than I can keep up with. Often I make a decision to do one thing knowing full well that means I won’t be able to do a whole list of other things begging to be done because I can only seem to accomplish so much…. One tiny task at a time, maybe only one tiny task per day, if that. I’m barely keeping up with making sure bellies are fed and clean clothes are available… I’m hearing an awful lot of “MOM!! I don’t have clean ____” my usual reply? “look in the laundry basket! Hopefully there are still some clean ones left in there!”

Yes, I have my moments of being incredibly discouraged and frustrated, feeling like I’m barely surviving. Yet, I keep reminding myself I need to make the most of today because I only have today once. I don’t get to have a do over. I can’t wait for better days, I need to make the most of what is given me now. Some days all I can do is just get through the day, but more often I try to purposely pay close attention to the little details, to soak in the many things there are to enjoy with a house full of little ones and an outdoors full of the wonders of summer. More importantly to try to invest in the lives of my children even in the little moments.

We have two more months of summer vacation left before school starts in again… I’d say if those two months turn out like this last has I’ll be satisfied that it was time well spent.


It has nearly been two weeks since my last published post… there have been a few posts I felt quite inspired to write and even got excited about, but when I sat down to write it faded from me fast… as someone who expresses herself best in writing, someone who loves to put words together this is not like me. Usually it burns in my mind until I can get it written down, but now it fizzles out even before I get a whole entire paragraph written.

So thus explains my silence of late. I’d like to hope this is just an intermission of sorts, and not the start of something more permanent. Not to say I want to keep this blog going forever, but the passion for writing, I’d like to keep that if I could!

And that’s as far as I’m going to get tonight… will put my writing on pause…

Mentally Speaking

There was a decided improvement a while back when the medication I had tried worked itself out of my system. The difference was a huge relief, and yet, I’m still struggling. I have to work hard to figure out what day of the week it is, and forget sometimes what month it is for that matter. I get distracted way too easily totally forgetting what I was about to do… It’s a battle in there, the fight to find elusive thoughts and memories, searching for words in the middle of sentences or drawing blanks for nouns… Thinking I did something because I had gone to do it, but actually didn’t because I got distracted and promptly forgot all about the previously planned action.

It’s easier for me to write, always has been, but much more so now that I need time to form my thoughts, search for missing words, and rephrase to make it more understandable (oh what a wonderful invention it was to be able to delete things and rewrite them without having to use correction ribbon! LOL!)

They say dystonia doesn’t affect the mind. Often in these sorts of discussion medications are blamed. I can point to a few instances where that obviously was the case for me (like recently) but I’ve continued to have decline over the years even when I was pretty much medication free… Other things like fibromyalgia and even the chemical sensitivities can cause “brain fog”. What ever it is causing my cognitive dysfunction it seems it is progressive like everything else. It’s frustrating, and makes me wonder if it’s this bad now, how bad will it be even 10 years from now, let alone when I become elderly?

I don’t know. The struggle is great enough now as it is. I used to be proud of my logical mind, and now am only bewildered by its missing pieces. While I’m thankful for moments of clarity, I’m scared by the increase of confusion.

And then, I remind myself, when I was 20 I was sure I would be wheelchair bound by 30. I didn’t find the need to use a wheelchair regularly until I was in my mid thirties, and now that baclofen has helped get things under better control I rarely ever use the wheelchair. I’m so thankful! There still may come a day when wheelchair use will become permanent, but it looks like I’ll be closer to 40 by then, or even older. That’s a positive! Who knows what will happen with the cognitive dysfunction… Perhaps I’ll get to see some improvement, perhaps, I’ll be comparatively “sharp as a tack” when I’m in my senior years. You never know!

So, today, I plan to make the most of the clear moments, welcoming them like an old friend. I will try to learn how to laugh over the other times when it seems my brain has left for vacation without me. I will do my best to enjoy my children finding it a thrill to finish my broken sentences. Mentally speaking I may be as much of a mess as I am physically, but there is still a lot left to enjoy and I plan to not let that slip by unnoticed.

The Truth is…

I wrote about my summer plans yesterday. The truth is, I dream bigger than is possible.

The children had a day to remember yesterday. They did a few chores and educational things then played with play-dough and played outside and then were absolutely thrilled to watch me sew two sheets together to use for a roof for their clubhouse… And all that was just in the morning. It was all I could do to keep up with them. I had had hopes to have a few extra educational fun things for the preschoolers to do, but when I went to print out something it gave my computer a virus that I fought to get off all the rest of the day, well, whenever I had a few minutes enough to sit down and work on it…

By lunchtime I was so exhausted I could barely scramble some eggs to feed everyone.

By bed time last night I was doing everything I could do to discourage a brewing dystonia storm from unleashing it’s fury.

I managed to avoid a storm, but it’s still brewing this morning sending warning signals out, telling me I’d better be careful. I’m so tired this morning, and in so much pain, and so frustrated I could burst into tears at the least provocation I’m sure.

That is my payback for trying to be a “normal” mom. I so want the kids to have a good summer. I want them to have me help them make memories. I want to do as much as I can on my own, without asking for outside help, as I know everyone else is so very busy.

I obviously can’t do it quite like I had dreamed of… I’m going to have to lower my expectations, be more realistic, and pace myself better. This rate I’m not going to make it to the end of the week, let alone the whole summer.

I have to calm the thoughts in my head… There are the normal ongoing chores that need to be done (3 loads of laundry waiting to be folded, a bathroom that needs cleaning…), extra household projects that are begging for attention (we are becoming overrun with toys, they need sorted and reorganized). There are the childrens’ needs too, doctors appointments, and certain hopes and goals I had for summer school work to help them be ready for the start of the new school year… Of course that doesn’t even begin to include the fun stuff…. As I wrote yesterday, I am so distractable now I think that is why these things run around my mind with more urgency…

It all comes down to yet again me needing to figure out my limits and pace myself better. Truth is, I had noble dreams and don’t want to let go of them all. I don’t have to, just need to modify them.

The truth is, this is reality. The truth is I’m frustrated today, but hopefully we will settle into a happy summer routine soon. The truth is, this summer will be a “success” even if we hardly do anything on my wish list.

Summer Plans

For a while I didn’t have a clue what we would do this summer. It’s a sizable change of schedule for us, and the kids need something to do… And then finally ideas started taking shape and plans started forming…

I am so glad I’m not on that Rx anymore. What a huge difference! The only thing left lingering is I’m still occasionally hitting some pretty big blanks in word searching when trying to carry on a conversation. It is possible those are just my normal ones and I’m just more keenly aware of it, but they seem a little worse than normal and I have to wonder if it is left over from the damage the med made…. If it is, I’m ever so glad I stopped it when I did!

So far, since stopping the Rx I remained fairly stable, able to function at an acceptable level on the other medications I’m on. I was super super careful to make sure I didn’t forget a dose, and that always helps! Sunday, I got distracted by filling my pill box for the week and missed my morning dose. I can tell a difference. I can’t forget.

Forgetting seems to be a special skill I’ve developed more over the past few years. I used to thrive on multi tasking and now instead I just get distracted and forget important things. The other day was prime example… I was pulled in so many directions I was getting frustrated and near tears as I’d start something, be needed to do something else, grab yet another thing along the way and discover I’d completely forgotten to finish the first thing… That’s not who I used to be. It’s a limitation I have to learn to live with.

Anyways, there I go getting distracted about something else! I was writing about summer plans… It would be so awesome if I could remain somewhat stable over the summer, it would make things so much easier for all of us. Reality probably won’t be that way, but I can dream. My preschooler misses school already, and I really want them all to keep up on some skills and learn some new ones to be better prepared for school when it starts up in the fall. If I can just keep up physically and mentally I have visions of educational projects we can do, keeping it short and simple of course! I want to work on teaching new household chores, and establishing good habits, I want to read stories, and push little ones in the swings. I want to be well enough on occasion to say “yes” when another adult happens to be available to drive and help out to going to the park or some such thing. I’m dreaming and making plans. It makes me motivated and excited. I’m just hoping and praying I can do it, and if I can’t, trust that it’ll all work out somehow despite my limitations.

Bring on summer!

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!


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