Of Storms and Peace

Navigating this road called life

Mighty Tears

As you may know, I took a large part of the summer off from blogging here trying to reevaluate and refocus. I tried blogging in a different style somewhere else telling more stories about my kids, but that blog didn’t really take off. I’m glad I took a break, it was good in many ways, but there were many times I didn’t blog when I wished I could, and you should see the countless drafts I half wrote up and never finished.

The most significant one was sharing what really happened a few months ago. Maybe some day I’ll share the details, but the conclusion of it all was, my symptoms were so very severe I thought I might not make it through that storm. My breathing was arrested so long that I would slowly lose feeling and then hearing and just as I was beginning to lose consciousness the diaphragm spasm let go and I started gasping for air. The full body spasms and convulsions went on for so very long I didn’t know how much more my body could take, it wore me out and wore me down. Through it all however, my biggest fear was that my family would give in and call for emergency care. I wasn’t ready for that, the thought of being mistreated and assumed I was faking was too much to bear, and since we still have yet to have a working protocol in place I thought it was a real possibility. By the end though, I was in such bad shape physically I was torn between praying my family wouldn’t call, and hoping oh so hoping they wouldn’t wait too long and regret it.

I made it through, without going to the emergency room that day. But I should never have had to be afraid of calling for help.

I’ve been blogging more lately, partly because I need it for my own therapy, but also because I want to help. Writing is the one thing I can do. I was encouraged to contribute articles to The Mighty, a site I’d not heard of before a few months ago, but was impressed with their mission and their ability to reach a far greater audience than my little blog does. I spent a lot of time praying about it and wondering if this is my next step, I want to be able to help more people, not only as an encouragement but spread more awareness.

The biggest thing on my mind was to share what it’s like to struggle to get the medical care we need, what so many of us go through when our symptoms turn severe and we need help. Every time I heard another story my heart broke again and I was filled with a greater urgency to write and speak up about it. Watching others be afraid to seek emergency medical care when their symptoms were critical, and then hearing what happened when they finally did was heartbreaking.

The first story I shared with The Mighty was a version of the one I wrote about my husband a little while back. I wanted to start with something sweet and safe, but in the meantime I was pouring my heart and soul into the idea that I could and should share our story about what it’s like to be mistaken for faking. To be honest, I was terrified of putting myself out there in such a public way, but so desperately wanted to help. I wrote an endless number of drafts, had it almost done, and then let it rest for a while while I was working up the courage to share it. I finally submitted it, and in just a little over a week’s time the final details were finished and it went live.


It’s been less than 24 hours and I am already overwhelmed with the responses. I had shared it in a few support groups and could hardly keep up with the FB notifications of likes, and comments and shares… The “me too” stories have had me in tears. I knew it was a common theme among us to be mistaken for faking or drug seeking in emergency situations, that’s why I wrote it, but the stories are heartbreaking.

I know better than to begin to think what will happen next with my blogging and writing. The Mighty was so kind to work with me in sharing my story and has graciously asked me to keep submitting stories for them to share. I have ideas and hopes for future articles for them, but will see. Life often times has a way of happening differently than I envision it.

I want to thank everyone who encouraged me to not stop writing, and helped me overcome my fears of sharing the details of this story. You played a part in reaching more people than we could have otherwise, and given opportunity to encourage others to open up and share their experiences.


It’s November 21, and we’re having our first snowfall of the year. It’s not just a little dusting on frozen ground, it’s a thick white blanket on soggy wetness. To be quite honest, I’m not all that happy about it, at all. I’m afraid some of the way I’ve been describing it today is “it’s yucky out there!” and “what a mess!”

To me it just represents how yet again what a failure I’ve been at being one step ahead of things and prepared this year… Some children didn’t have appropriate outdoor apparel in their size, because I just can’t seem to keep up, and somehow I still thought I had time. I’m not mentally or physically ready for winter either. It means struggling harder or choosing to stay home more. I’m already such a fall risk, ice and snow don’t help that any, and the cold is just too much for this body to handle sometimes, both with more pain and more spasms. And let’s not forget this means my husband’s busy season is just around the corner meaning he will be gone longer hours and for 6 days a week… Nope, no way am I ready for winter! This snow can just go back to where it came from!

And yet, none of the rest of my family thought so. Our youngest was the one who woke us all up this morning with the excited announcement that it was snowing. He has been so thrilled about it all day saying things like “I’ve waited for snow for such a very long time!” and “it’s so very beautiful!” Aw! Precious little guy! The rest of them have had similar things to say throughout the day as well.

We had a few errands to run that seemed unavoidable (at least to me) so we went out. It was nasty. Roads were a bit slick and the parking lots full of slush. Wheelchair and or cane in that mess wasn’t all that fun. But we made it home ok and with the things we needed to get.

If I had planned ahead better we could have avoided that trip.

As soon as we got home the kids all got bundled up and went out to play. Such joyous fun they had! I couldn’t help but smile and be glad for them!

I still am working on my attitude, I’m still a bit grumpy, but I’m grateful for the fun my children got to have today because of the snow. I’m thankful for a husband who is patient with me and willing to take us all out to run errands even when it’s less than pleasant weather out there. I am thankful for our little house where we can keep warm and dry, and I’m even thankful for how beautiful the white fluff is piled on the trees outside the window.

Experiment Results

The last few weeks have been something for sure. Had I used any forethought I would have known better than to try to start a new medication the same time daylight savings time ended! Both of those coupled with another injury and insomnia have been a challenge. I’m still quite exhausted.

Thank you everyone who prayed about this medicine change, I was indeed quite nervous about it, not only was I trying something I didn’t have any idea how I would react to, I was supposed to be cutting another one back at the same time. Much to my relief, the side effects were tolerable and short lived for the most part. I began to feel a difference right away… Only, for the worse. As I cut back on the baclofen to add the new one in my more constant daily spasms grew stronger and more persistent. It was almost a surprise how strong they were, and it was tiring and painful.

I was excited about it though. It showed just how much relief I had been getting from the baclofen. When I was progressing and it wasn’t able to keep up as well as it had in the past doubts had begun to creep in. Was the baclofen losing it’s effectiveness? Or, maybe it was just a placebo effect and never really worked at all … (will I ever get away from the memories of doctors assuring me my movement disorder is psychogenic and can only be helped by therapy and anti psychotics?)… Having to cut it back showed me just how much it had been working and was a relief to know!

I’ll never know why I had to wait so long to find someone willing to let me try it in the first place, but I’m so glad I have it now…

I pushed myself to go ahead and go through with adjusting all three daily doses of meds to what had been suggested and by then I was really struggling with my symptoms really flaring and insomnia at it’s worse. It was such a relief then when I finally heard back from the nurse that the doctor approved my returning to my previous dose of the baclofen. I’m still working myself back up to that, my body can only handle so much increase at a time.

I’m hoping and praying in the end once I get caught back up on sleep and back up to the dose I need to be on that things will be better. Time will only tell. I’m just glad for the positive that came even from the negative part of this experiment!

Frustration, Fear, and Determined Love

I admit I dissolved into a puddle of tears when I got into the van after my appointment. I had hoped as time went on I’d be able to communicate easier with my doctor but this visit was as or more difficult than ever.

I can write much better than I can talk. Especially in situations I’m not quite comfortable in… I’ve always been that way, but seems even worse now.  Brain ceases to compute fast enough and tongue refuses to cooperate.

I was having such a hard time understanding what he was saying and knowing what to say and truthfully unsure about medicine he was suggesting because I never heard of it and was trying to understand how it worked and what it was for. I must have come off as reluctant because he finally asked if I wanted help. Yes, yes, I do want help. I need help. I need to be able to function better.

We left with me wishing I had answered questions better, to describe what is really going on with my spasms, and had been able to express the true extent of my disabilities better. But, I had to remind myself he understands I’ve progressed and is addressing that and that is what I need.

Which brings me to the next part. I’m scared. Truly scared. The Fear of not knowing what the side effects of this new medication he prescribed will do to me is keeping me from wanting to start in. I will, I have it all set up to do so tonight, but I’m dreading it.  He said the side effects are less… but that’s what he said last time, about the prescription I had to quit after only a few days on a minute dose.

The meds I am on were seriously difficult to get used to… I’m not ready for weeks or months of being scary sick trying to adjust to a new one. I don’t want to go through it, and I don’t want to put my family through it… but it’s not fair to them either for me to continue to progress and become more debilitated if there is something that can help control the symptoms a little better. I need help, and this may help.

And so, I take a deep breath and say I’m going to do this. I’m grateful for finally having the chance to try even though it is oh so scary.

In the meantime, I laugh as my small son goes running through the house shaking a toy that rattles singing “Jingle Bells” while his sister crawls behind barking to the same tune pretending to be a seal… I’m doing this for them. I can do this.


I’m dreading tomorrow’s Neurologist appointment… I wonder if there will ever come a time when I won’t dread them any more. I’m still always nervous that he’s going to give up on me, especially like now when I have to admit I really am progressing again. I tried to pass off my increasing symptoms as the consequences of over doing it, but it’s taking less and less to “over do”.

I’m back to having to use the wheelchair for small errands at the store, and daily life has become more of a struggle, not to mention the falling because my legs won’t cooperate.

I hope tomorrow we can communicate well, and his plan of action is something that will be something that works well… I have had lots of thoughts about how I hope the end result will be… I hope it goes half as well.

I dread change, whether an increase of meds I’m on or introducing new ones, I’m not looking forward to the adjustment phase. I may be struggling now, but working through side effects could make it pretty rough for all of us for the next few weeks and even months.

I’m hoping and praying for a clear mind tomorrow… I’ve been in a haze for the past week with sick kids and being sick myself. There were a few times when I thought I was going to have to post pone this appointment and I so didn’t want to do that. But now that it’s here, will be here tomorrow, I’m filled with dread.

Praying for peace.

In Sickness and in Health “This is true Love”

I’ve been kind of extra sentimental lately because it is the ten year anniversary of when we began seriously discussing the idea of marriage. That was oh so long ago! We had so many dreams and hopes and goals. We talked about everything from having children, to finances, to matters of health… We had the advantage of knowing back then that I had chronic health issues, but try as we might, there was no way we could even begin to imagine how it would impact our marriage or how much worse I would become.

Marriage itself was an adjustment, add in raising babies and dealing with unexpected complications of health issues our commitment to each other was both tested and cemented all in one… The scary moments often to drew us closer together, while the day to day weariness of having to deal with my limitations tended to wear us both down. The frustration of the burden of it all sometimes fueled anger and resentment.

At times I wondered if our marriage could handle the strain.

And yet here we are, still very much in this together, and still in love. Ten years ago I needed flowers and chocolate as a token of that love. Now, while I still enjoy receiving such gifts, I’m overwhelmed with many other tokens of love shown in ways only he can. The acts of selfless love. The moments when he gives of himself when it’s inconvenient and even unpleasant.

Times like the other day when I apologetically mentioned we’d need to bring the wheelchair along when we went to town. I knew how much of a hassle it is and how much he hates having to mess with it. So I was taken by surprise when he cheerfully responded that he was already planning on it. I was so blessed by his planning ahead for me in such a way and by his willingness to do something he’d really rather not do to meet my needs. “Now this is true love!” I thought!

There are the little moments like the other night when I was in pain, struggling with spasms throughout my body that wouldn’t stop twisting my arms and legs. He had just gotten up to take care of a child who had awakened us, to come back to bed where I was whimpering and begging him to rub my arms in an attempt to coax the muscles to settle down. Concerned, he asked me if I’d taken my medicine. Try as I might I couldn’t remember for sure. So he quietly slipped out of bed to go check and see. Here this man had just been up taking care of our child, and then he willingly got up again on his own accord to go see if I’d taken my medications? I felt so loved.

No one knows me and my specific needs better than he does after so many years of living this together. When I’m at my worst and need assistance to get to the bathroom he is there facing me, lending his arms for me to grasp for dear life as I fight to make my legs work. He walks backwards at the perfect pace, not too fast, not too slow for me to try to make my way the few steps it takes to get from bedside to bathroom. In the midst of my concentrating hard to make sure I don’t fall and keep moving forward in this slow dance of sorts I again feel the love and my heart bursts with gratefulness.

It’s these moments I must remember and cherish when the going gets tough and we don’t seem to be on the same page on anything. When we are both fed up with it all, when he’s grumpy and I feel all alone. When he is irritated and complaining and I forget I’m not the only one suffering. I am so very blessed to have family who cares and a partner who still loves and cares for me. I know this sort of strain can take it’s toll on relationships causing them to crumble. Certainly this was way more than either of us signed up for, and life has turned out a good bit differently than either of us hoped or expected, but we are doing it together, and I am so grateful.

I’m so glad that while my physical limitations have changed so much of what life is like, we still enjoy life together. Somehow he still finds my sense of humor funny. We love to live and laugh together, and cherish the moments we get alone, in the midst of raising four precious children. Life is difficult at times, but it’s good. I am so glad we have spent the past 10 years together and I pray we have many more to come. I am so blessed to have someone who has stuck with me through everything, especially in sickness and in health.

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.


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