Of Storms and Peace

Navigating this road called life

Missing Out on Big Moments ~ Christmas Program

I’ve done my best to keep things as easy as possible this month… Spreading our Christmas fun out in little bursts and enjoying every little moment we can… I can be content without half of what I attempted last year, but there are a few things that do sting a little….

Like, missing watching my kids in their Christmas Program at Church this Sunday… They are excited about it, and my youngest is to join in too, something I would dearly love to see… But, for a person with MCS (Multiple Chemical Sensitivity) and being hyper sensitive right now, a big special event like that is about the most lethal time to attempt to go to Church. There are going to be more people, which equals more fragrances. Just leaving the house in cold weather intensifies my dystonic spasms (its like flipping a switch when I step out the door) add the fragrances (another huge trigger) and I’m doomed. I know my body will go into severe spasms and or go crazy ticcing, and a migraine is likely. (which I can’t risk tempting another one to come on so soon after having a doozy of one already this week) The last two times I attempted church the weather was beautiful, it was a normal Sunday with not a lot of extra people and it ended very badly. I went into dystonic storm both times and had to leave earlier than planned because I was only going to get worse…. It’s not just that it’s embarrassing, it’s very painful, it’s exhausting, and can do me in for days afterwards. I dream of the day I’ll get to go again. Actually not just go again, but participate like a normal human being, to be able to share my gifts in music and join in with the festivities and worship…. It has been so very long since I’ve done that.

You would think I would be used to missing out on big events because of my MCS and movement disorders by now… But there have been some pretty important things I’ve missed over the years due to being too sick or too vulnerable to go and it was really really hard and disappointing. Sometimes I wish I could give my body a stern talking to, or pep talk that would actually change things so I could go. If I could, I’d be there this Sunday, watching and filming my children… And if I could, I’d be up there making that dulcimer duet a trio, and singing my heart out in the cantata, and maybe, just maybe playing my violin while my sister plays the piano like we used to so many years ago….

But that is not to be this year. My children are being very sweet about it. Actually they have grown so accustomed to me not being there it’s not as big of a deal to them as it is to me. I’m glad they are looking forward to going!! But this year, I’m just going to have to miss out.


My body has been adjusting to the half dose of Baclofen… Still a bit weak, but doing much better than when I started, each day was a little bit more improvement. I was up and about and doing my best to do what I could as energy allowed.

I had big plans for Saturday…. Trying to get a few things done before I start increasing my dosage of Baclofen since I don’t know how bad I’ll react, even with doing it slowly. Who knows how sick I will be next week… But, of course, I ended up being absolutely exhausted before we even had breakfast. I told all the kids they would have to be my energy and help me do things…. Still, the majority of my plans had to get shelved.

Saturday was also the day planned for my oldest daughter’s surprise party with her grandparents… Just two extra adults and I didn’t have to do any of the work, and it wiped me out…. I was so tired I was getting cranky with the excited happy rambunctiousness of my own children. I sent all the kids to bed for nap time and crawled between my own covers… I fell asleep pretty quickly, but kept being woken by restless still excited children. Yie…. I’ve talked before of my nerves “singing”…. Well, by the time nap time was over my nerves were screaming… I couldn’t take any sound or noise the still happy excited children were making. I even tried ear plugs, but couldn’t handle the feel of them… Somehow eventually the frayed nerves calmed down a little, and I actually managed to give the kids their baths… My muscles are still so weak though that even the faucets were hard to turn on and off.

That night, everything was acting up, tics, dsytonic spasms, tired, weak… Then woke up choking on reflux and ran to the bathroom. Tried to. Ended up doing a face plant on the floor into the hall… My legs just gave out from under me because of the Baclofen…. I couldn’t help it… I thought it was terribly funny… Hubby didn’t know what to do with me laying there. LOL! Yeah, I was sore the next morning (today) but still think it is funny…. We just have to laugh!

Today I just allowed myself to take things slow and easy… Next week will be what it will be and I can’t change it by going crazy trying to prepare for it now. I am so hoping and praying I don’t have a strong reaction to increasing the dose… I really don’t want to get as sick as I was a week ago! I must admit I’m nervous about it, because every increase of the medicine I take for my tics made me so very very ill and took a while to get used to…

I’m just hoping and praying that this week goes well, and that by Saturday when we have a big Christmas gathering to go to I’ll do better than I did over thanksgiving!

Baclofen Side Effects – A Funny but Serious Warning

I’m walking on my own some today which is a HUGE deal! Have to be careful though, those wobbly legs like to give out whenever…. This morning I got to the bathroom all by myself, without clinging to every wall and grab bar I could find… I was so proud of myself and then promptly lost my balance and fell onto the toilet. All I could do was laugh, I mean, that’s where I was headed, I just got there quicker than I had expected! Hey, at least it was there to catch me!

It is pretty funny, these wobbly legs of mine, I feel like I must look absolutely ridiculous, stumbling about, catching myself as I sway and lose my balance…. I just keep laughing at myself.

Seriously though, anyone who is going to try taking Baclofen listen up! That stuff can be pretty powerful! I know we all have different reactions to different medications, but um, yeah… This is a muscle relaxant, and well, for me it REALLY relaxed my muscles, well except for the dystonic ones it seems.

The new doctor had told me stop taking Diazapam and switch to the Baclofen… Since the Diazapam wasn’t working all that well, and since it’s addictive he wanted me to give Baclofen a chance. I was pretty excited because I have friends with dystonia who uses it, and from what I thought I understood, compared to some of the other drugs that are sometimes used with dystonia the side effects are minimal. He didn’t give me any special instructions, just said he was giving me a low dose and he was going to give me a month for my body to get used to it before having me come back for a follow up to see if its working and if we need to adjust the dose.

I decided it was best to wean myself off of the diazapam first…. I probably did it too fast, but was anxious to start the Baclofen, my dystonia was really getting intense, I was in serious pain…. Pain I would rate as off the charts. I was stuck in bed writhing in agony the tears flowing unbidden down my face. And so, despite my better inner judgment I jumped right in and took the Baclofen as directed. 10 mg 3x a day.

At first it relaxed me just enough to ease that pain a little. It seemed harmless enough and I have to tell you it was a very welcome relief! I threw caution to the wind and kept taking it as directed. Within a few days however I was in a seriously weak condition. My attempt to go to the bathroom on my own was to slide out of bed onto the floor, lay there for a while, scoot a few inches, lay my head back down for a while and repeat. I was just so very wiped out. Not only that, because I was so weak my breathing was shallow bringing my oxygen levels down, I didn’t have an appetite, I really didn’t care about anything, I couldn’t keep my eyes open and slept a lot, and the intestinal cramping was awful… The thing is though, I was still having dystonic spasms. If I tried to walk (hanging for dear life around my husbands neck) my body would twist in a spiral, worse than ever before because I had no strength to resist it. Wet noodle? More like an over cooked wet spiral noodle! (even at my worse I thought that was funny!)

I kept hoping eventually I’d get used to it, I remembered just how very sick I got with the Clonidine before my body got used to it, and now, I can’t tell I’m taking it, other than the fact that it is helping hold my tics at bay. I’m STILL hoping that is what will eventually happen with the Baclofen for my dystonic spasms. But, with the Clonidine I had been warned to take it low and slow and very carefully work myself up to the full dosage I am finally on. So, we decided it would be better for me to split my Baclofen pills in half.

A couple days later is now, still weak, but oh SO very much better!!! I don’t know why I was so stubborn and let it get to the scary point before cutting it back. But oh well, the past is the past. I still am weaker than I should be, and I’m still dealing with dystonic spasms but I’m hoping eventually it’ll all even out and it will do what it’s supposed to and actually be a help. I do know I’m going to give it a few more days before I attempt to increase the dose, and even then start by doing a little more at night when I’ll be sleeping anyways.

So, the moral of this story is, while I know we are all different, I will always recommend to anyone considering taking Baclofen for the first time to take it low and slow… It may be necessary. This stuff can be pretty powerful if you are not used to it!

I Can’t Breathe. Literally.

The subject of breathing difficulties come up regularly in the support groups I am in. There are various levels of not being able to breathe well and different causes, but sometimes it is not being able to breathe at all during a dystonic spasm just like I do. Hearing “me too” can be one of the most comforting phrases, if it comes from someone who experiences the same…. It can be frustrating though to hear it followed by advice about relaxing and focusing on breathing, and you realize the person maybe didn’t quite understand what we meant by not being able to breathe. I end up trying to explain again what it’s really like not being able to breathe at all and wonder if it is possible to really explain it to someone who hasn’t experienced it.

Of course, this issue is of even greater importance when I’m trying to talk to doctors about it, but even then I seem to have a hard time getting across what I really mean. These doctors have never felt like what it is to have a dystonic spasm, let alone not be able to breathe because of it attacking the diaphragm muscle.


This whole concept of my not being able to breathe due to dystonic spasms in my diaphragm is hard to describe…. It should be simple, I breathe in and it forgets to stop spasming and just keeps getting tighter. Somehow it’s hard to convey that when I say “I can’t breathe” I am being absolutely literal, I’m not using a figure of speech. I don’t mean I’m struggling to breathe, or it’s hard to breathe, I mean, there is no breathing happening at all. No, actually, its worse than that. My body is fighting against me, and it feels like it’s trying to suck the very life out of me. Those who have experienced the same “get it” but those who haven’t experienced it often end up assuming it’s something else, something a person can work through if they focus and relax.

I have hyperventilated before, this is not like that. I have had a panic attack before, this is not the same. I have had a baby pushing up against my lungs making it difficult to breathe, but that is totally different. I have had pneumonia, and bronchitis, with very labored breathing and that doesn’t even begin to compare. I’ve had tightening of the chest muscles in my rib cage for one reason or another, and that is not what I’m talking about. I’ve had dystonia twisting my body up so much it is difficult to get enough room to breathe…. But that is still not even a comparison, because all of these are difficulty breathing, not the literal not being able to breathe.

I find myself trying to explain over and over again. So, I’m writing this down as a blog post in an effort to explain it, again, perhaps in a way that might make it a little easier to picture. I’m writing this for myself, so I don’t have to keep explaining any more, but I’m also writing this on behalf of the unfortunate few who go through it too. I am going to do things a little different then I usually do. I’m going to add graphics to help give a better picture, and actually post quotes from a website too… I’m not asking for sympathy, just trying to help those who haven’t experienced it to understand a little better what I mean when I say I can’t breathe.

Dystonia is the brain causing muscles to involuntarily do things they don’t normally do… It causes spasms that can cause twisting that clamps down and gets tighter and tighter until it jolly well decides to let up.
Those spasms can last for seconds, minutes, hours, days, or in some cases, forever, causing a “fixed” posture of the affected area. It supposedly only affects the muscles that we can control voluntarily, and leaves alone the muscles that function on their own like the heart for example…. While that fact is being debated by some, the truth is, while our bodies breathe without us thinking about it, we can hold our breath, we can consciously choose to breathe at a different pace if we want to, and thus, those muscles can and are affected by dystonia. Supposedly it’s rare for it to attack the diaphragm, but its possible, and it does for some of us. Especially for those of us who have generalize dystonia, the the kind that can choose to attack any given muscle throughout our whole entire body from head to toe whenever and where ever it chooses to strike.

The best way I can describe what it feels like is that it’s like a boa constrictor or a python intent on overcoming it’s prey.
I don’t mean I’m writhing around like a snake, and I don’t mean I feel like something is wrapped around my chest necessarily. I mean, that if there is any effort to struggle, or to attempt to breathe it only gets tighter, and tighter. In this case, the constrictor is the diaphragm muscle.

I have been told a whole story by a resident in a Neurologist office one time about how we can survive without our diaphragm muscle, that a person is even capable of running a race without one. As if that should ease my concern. In my case, it’s not a matter of the diaphragm just giving out and not working. It’s actually fighting against me. I can’t just choose to use other muscles to breathe. My lungs are not given the liberty to do what they are made to do. It won’t let them.

Dystonia doesn’t like resistance. At least in my case, if someone was to try to force what ever is spasmed into a “normal” position it only makes it worse. The muscles fight harder and get tighter. But relaxing, meditating, and dreaming of a pleasant place doesn’t magically make it relax either. Like I said earlier, it lets up when it jolly well pleases. But those things do at least help me remain calmer and not panic as much while I try to wait it out. The only thing that sometimes helps these breathing attacks is what we call a “sensory trick” where my husband gently rubs my back. Sometimes that somehow triggers a release and I can breathe again, but it doesn’t always work.

For the most part, it is like someone stronger than I am is holding me under water…. My life is in his hands. If I struggle it will only make it worse, but if I relax, he still may not let me go. But when he does, I suddenly surface gasping for breath. Sometimes it’s only once, but other times it happens over and over and over again. (I was going to put a graphic here, but they were all too disturbing, worse than the previous one)

The release is sudden…. It’s not a slow realization that I can breathe, it’s all of a sudden broken free and I am gasping for the air that I was deprived of… I wasn’t given warning before it happened so I didn’t get a chance to fill my lungs with air ahead of time, and it lets up without warning in just the same way.

Just like any other dystonic spasm I have had it varies in length… So far they have lasted for just a few seconds to long enough my head started feeling funny, everything started tingling, my ears started ringing, and knew if it lasted much longer I was going to faint. What concerns me is that overall my dystonia is getting worse, I’ve had spasms last for hours, and we all know we can’t just not breathe for hours.

After my past experiences with the ER I don’t ever consider calling them an option any more, but I’ve heard the fear in my Mother’s voice as she watched me not breathing, wondering when and if to quit heeding my wishes and call for help…. I have been assured that our bodies will override everything and breathe when they need to. I’ve had fellow sufferers assure me that if I were to pass out my body would relax enough to breathe. But, I’m not sure I can trust that, but what can I do? If we wait that long there will be no time to call 911 and get someone there before I’m brain damaged, or dead.

This is documented in the DMRF (Dystonia Medical Research Foundation) website …. “If a person s swallowing or breathing is affected by a dystonic storm, he/she may require emergency medical attention. In very severe cases, individuals may be admitted to an intensive care unit setting where they may be sedated with medication or need temporary mechanical ventilation to support breathing.” So, you see why I am concerned and keep asking doctors for help? But I can’t get help if I can’t get the doctor to understand it, and usually that is the case. I had one doctor relate it to being like a toddler throwing a tantrum and holding their breath. That wasn’t reassuring because this is not me holding my breath or whatever, and certainly not a form of a tantrum. But anyway I digress…

I don’t know any other way to explain it. This post has gotten so long I’m sure most anyone has quit reading by now anyways… But if you are still reading, I will say I hope I helped make it a little more understandable. It’s not something I can concentrate and breathe through, it can be scary, it is painful, and while it doesn’t happen all the time, it doesn’t seem to be a phase that will just go away on it’s own. This is part of what dystonia has become for me… It makes me so I can’t breathe. Literally.

(the website page I referenced in my quote https://www.dystonia-foundation.org/what-is-dystonia/frequently-asked-questions/frequently-asked-questions-symptoms )

Managing the Holidays ~ Time for Plan B

I love traditions, I love this time of year, with the old familiar things to look forward to. Christmas time is extra fun with little children in the house. I love to hear the excitement in their voices and see the extra sparkle in their eyes. We are counting down the days.

I already knew this year was going to have to be a little toned down from what I attempted to do last year, December is naturally extra busy with both Christmas and one of our children having a birthday only a few days later. But then I got a huge reality check during thanksgiving.

We had planned to go a gathering for my side of the family on Thursday, and then my Husband’s parents on Friday. In years past that wasn’t any big deal. This time I didn’t even have to cook anything, and I took a nap the day before…. But my body somehow missed the memo. I was struggling so hard Thursday morning just trying to get ready for the day the kids kept asking me if I was going to get to go. “Of course” I said… I would never want to miss it!

I went, but I kinda sorta missed it anyways. It took two men just to get me into Mom’s house. I insisted on sitting at the table with the rest of the adults to eat… I know the food tasted good, but most my concentration and energy was focused on keeping my twisted body sitting upright… Most the conversation just swirled around me. Once we were done eating I was helped to the couch where I promptly fell asleep…. I missed the program the kids had put together and only a few notes of the family singing time slipped through my consciousness, only for me to conk out again. I felt bad about it, but just couldn’t stay awake. Eventually I woke up enough to be able to visit a little, but was ever so glad when it was time to go home and I could crawl into my own bed.

The next day I tried. I really did. But my body had just had enough. I had to have help just to go to the bathroom and my speech was going fast. We finally decided my husband and children would go on without me, and bring me a plate to eat after they were done…. I had looked forward to the traditional dinner and even hanging around so hubby and his dad could watch a football game, but instead I slept some more, this time in my own bed.

So, now I have been carefully looking over the December schedule again and paring it down some more…. It doesn’t mean we won’t have fun. We are already, watching a Christmas movie here, eating a special treat there… We are going to spread the fun out the whole month in tiny little bursts of fun. And anything that was on the calendar that I can cancel I am, so I can conserve my energy for the few big days we don’t want to miss. All in hopes my body decides to cooperate on those days!

I am so glad I got my Christmas shopping done on line super early this year, and have already managed to get things wrapped. There are only a few little things left.to prepare… If I can’t do another thing, we are pretty much ready, and can’t wait! =) We are counting down the days with happy anticipation.

Neuro Appointment – Mixed Emotions, but Moving Forward

We are without internet proper at the moment, but really wanted to post this update, so I am sneaking it in hoping it doesn’t use to much data on my phone plan…. I will write another post about the holidays later once we get regular internet back, hopefully soon….

I had my follow up with the Neuro today…. I didn’t have too many emotions about it as we headed in, not really too nervous or excited… Didn’t know if it was just because I was at peace and comfortable with the whole idea or if more of it was due to the fact that I’m so sick with this virus I finally caught from the kids that I didn’t care… I’m so tired and would rather be curled up in bed and just wanted it to be done with already. I did realize that this was the first time I’d ever seen a neurologist more than once, and that within only weeks from the first appointment. Now, that is an improvement I though. He gets points for that!

Sure enough all my tests came back clear. I already knew dystonia doesn’t show up on tests like that, but it is always nice to be assured that there wasn’t something else causing the spasms… No lesions on the brain or seizure activity…. So that’s good. He wants me to quit the med that the last Neuro put me on since it’s not working all that well and can be addictive, and suggested said he wants me to start taking the one medication I had been so hoping to start out with. I was so very pleased and relieved. He said we’d start out with a low dose and work up, and that there are other things we can try too… That was hopeful and reassuring.

But then my husband in a round about way asked what my diagnosis was and the doctor said “it’s kind of like Torticollis” (which is dystonia of the neck) I was taken aback at that description…. There it was, the unexpected thing that I wasn’t counting on. He knows more of my body is affected than my neck so I have no idea why he would call it Torticollis (which is what he wrote on my form)… I know I have generalized dystonia (meaning for me it affects my whole entire body), but still yet have a doctor to call it that proper… The alternative Dr I used to see called it “trunkal dystonia” while the rest of the doctors called it “stress” and one used the term generalized…. SIGH!!! BUT, the thing I need to remember is, he IS treating it like dystonia and he is willing to keep working with me and on a more frequent basis than any other Neuro could or would so that is a step in the right direction, even if it feels like baby steps!

It did feel like he’d forgotten half of what we had talked about 3 weeks ago, but I guess that is to be expected. But it made me nervous when he questioned me why I was on clonidine. I told him it was for my tics “but you’re not ticcing” was his reply. “that’s BECAUSE of the clonidine” I said, though my tics have been ramped up the past few days…. Thankfully he took my word for it. I was concerned that he was going to insist my spasms weren’t tics and I didn’t need that sort of medicine (which is right, the dystonic spasms he was seeing are not tics)… Instead he just checked up on what my BP was and listened to my hear to be sure I wasn’t reacting adversely to the clonidine and left it at that.

In conclusion, in an effort to show his sense of humor he gave me a split second panic attack by saying “see you next year!” After what happened with the last Neuro and us both thinking we’d bee seeing her more often I am not as trusting as I used to be when a doctor makes promises, so the first thought that entered my mind was “but he said he’d have me come in for a follow up in a month!!??!! Oh, yeah, next month WILL be next year!”

So, here I am, home again with mixed emotions. He seems like a really nice doctor seems to have a plan in place to try to help me…. Yes, we still are far from him fully understanding the extent of my dystonia and how it affects me…. But maybe over time, if we stick it out he will understand more, or maybe he won’t have to if the meds actually help.

I still haven’t canceled my follow-up in the Spring with the Movement Disorder Specialists lady that I saw in August… I plan to though if things continue to go well with the Neurologist I saw today… At least he so far hasn’t told me it’s “stress”…. And after 12 weeks I still have not been given an appointment to see the Psychiatrist the MDS had recommended… I’ve long ago taken it as as sign that I’m not supposed to see her, and while I’m completely annoyed at the way they handled it, I’m glad I didn’t have to go through seeing yet another Psychiatrist.

Yes, over all, looking from where I was a year ago with this whole journey I can say I’ve moved forward. It may have been by baby steps and a bumpy ride with some seemingly unnecessary curves along the way, but still moving forward. Hopefully by this time next year I can still say the same.

Thankful Heart


This morning I woke up to seeing two of the most beautiful things on earth. Pictures of a long awaited new born baby, and a breathtaking sunrise. My heart is full and happy.

Tomorrow is Thanksgiving and I want to do a post filled with things I am thankful for. I didn’t do the 30 days of thankfulness on Face Book this year, seemed like too big of a commitment, but I’m here to make up for it now! =)

This has been an exceptionally difficult year, each year has a way of topping the last, at least, physically speaking. I’ve had some very dark moments, even as recent as this past week (which I chose not to blog about). Somehow though, these difficulties, and these dark low moments make all the good shine even brighter, and I want to speak on those things today.

There are so many things, but family seems to be a good place to start…

I’m thankful that I have a family who loves me, who does their best to help and is there for me every step of the way. I cannot begin to count the ways that my inlaws and own family have helped out this year. I’m thankful for their physical and financial help, and especially their emotional support. When life began to feel impossible they were there with a can do attitude and told me the things I needed to hear to help ease the pain.

I’m so proud of my children and thankful for the progress and growth I’ve seen in all four of them this year. They are growing up so fast! They are excelling in school thanks to the consistent and skilled teaching by my own sister. I love hearing the things they have learned. I am so thankful how quickly they adapt to the “new normal” we have to find every so many months. Nothing compares to their love and their cuddles… I am continually grateful that somehow we were blessed with four miracles before things got so bad. I know I’m exceptionally blessed and am truly thankful.

My husband has been my rock. I can hardly believe we have been together for 9 years. We can still laugh at each other’s jokes. There is no one I want by my side more than him when going to important appointments with new doctors, or when I’m at my worse physically. It is reassuring to have him by my side as I fall asleep at night. I am so grateful that God provided a new job before he was scheduled to leave the last one, and that it is one he is happy at. I’m so thankful that there is a steady income, it may seem really tight, but a steady income is invaluable these days!

I’m thankful for friends. I may be unable to physically get out an socialize, and I may be a bit introverted by nature, but I’m thankful for the internet where I can cultivate friendships I never would have been able to have otherwise. I get to chat with old friends, new local friends, and support group friends. Some of these people I’ve never met in real life, and frankly it’s unlikely I’ll ever get to, but have become very special to me. And the best part? There usually is someone available to talk any hour of the day, whether to get through so deep dark struggle, or just to joke and laugh and while away boring moments when not well enough to do much else.

While people are more important than things, there are plenty of things I’m thankful for too right now. The list is endless, but in short here are a few things I’m particularly grateful for these days.

A home with everything all on the same floor, with no stairs, not even to get into the front door. A small house, with furniture and walls available to grab a hold of each step of the way if needed.

A bathroom within steps from my side of the bed. And a host of grab bars in said bathroom thanks to family for buying them and installing them.

A comfortable couch that serves me well when I can sit up, and a queen sized bed for when I need a break or when I can’t sit up.

A pretty pink cane, and a wheelchair that still serves it’s purpose well. The miracle that the right type of replacement tires were finally found to fix it, and all for free out of the kindness of other people’s hearts.

I’m also thankful that while the journey has been long and hard, this past year bit by bit I’ve gotten a little more help by one doctor then another… My condition may be progressive, but there have been little and huge helps along the way. Despite my frustration with how a lot of things have been handled, there still are things to be thankful for…. The victories may have been small, even almost imperceptible at the time, but it is forward progress and I will forever be grateful for that.

I’m also thankful for good health. Yes, I just said that!! The kids have been struggling with one bug and then another, and yet, with me taking massive amounts of vitamin C this seasons I’m avoiding most of it. Every time I think I’m getting sick it gets held back and never turns into a full blown illness and that is something to rejoice over.

I’m thankful for my faith, trusting in God to get me through has seemed impossible at a few moments here and there, but I am here to say I don’t know how I would have made it if I didn’t have God to rely on. When all communication skills are shut down physically, I can still pray and lean on Him to help me get through.

So yes, I have an endless list of things I am grateful for this thanksgiving season. As I look forward to families gathering, and all things traditional, I am doing so with a grateful heart. Looking back over this past year and even just this past week I have so much to be thankful for and I am glad.

Expect the Unexpected

I keep telling myself to expect the unexpected when it comes to doctor visits and procedures, and yet I always get caught off guard. I’m home again from my EEG, eagerly waiting for nap time to arrive so I can get caught up on some sleep.

When I had my first EEG almost 5 years ago I was in the hospital after having gone to the ER with severe symptoms…. The EEG was ordered just because we insisted. There was no special instructions how to prepare for it ahead of time, they just wheeled in the unit and did it. The smell of the glue compounded things sending my symptoms into a tail spin. I was still being affected by the medication I was on so I was in pretty bad shape, thrashing and twisting and slamming into the guardrails, totally unable to respond or communicate.

This time around we were handed a sheet with instructions what all to do prior, including only allowing myself to sleep 4 hours the night before. I had never heard of a sleep deprived EEG and so looked it up to find out what to expect. The website was quite informative and reassuring.

The sleep deprivation was every bit as tough as I imagined I was so woozy when I stumbled into bed at the hour they had said I could it felt like the room was spinning… I lost no time falling asleep… One thing these clinical instructions don’t take in account for was my being woken several times by my toddler…. When the alarm went off I was super cranky and didn’t think it was possible to get up, but I knew I had to so forced myself to get up and stay awake.

Once we finally got the Neuro’s office (they do their EEGs right there in their own space) We were greeted by a small grandmotherly woman with a big smile saying she was going to change the sheets from the last person she had done and wash the electrodes and then she would come and get me. After she left I turned to my husband and said, “I thought they said ‘he’ when then told us a tech would do my EEG?” My husband agreed, he was just as surprised as I was…. I was expecting some young guy tech coming up from the hospital to do it, not a woman who looked like she had earned the chance to retire. I could adjust to it though…. I should have known better than to think I had it all figured out!

The bed she had me lay on was so soft and inviting, it was all I could do not to fall asleep as she attached the electrodes to my head… I was surprised to not see a video camera anywhere,and I was a little unsure that she was doing it all without measuring and marking first like I thought was standard procedure (though you could tell she was a pro at electrode placement)…. The biggest wonder of all was the fact that the paste she used didn’t hardly smell at all, it was more like a cream than the awful glue that had been used when I was in the hospital. In fact, I had more trouble over the smell of the hand soap she used to wash up with after she was done! Oh how grateful I was that the most dreaded part of the whole thing was not to be after all! This stuff easily washed out afterwards too, not like the glue that had hardened and was crusty and had to be carefully picked out bit by bit the last time I had had an EEG done. What a relief!

She then put me through the paces, the ones I had read about and was expecting…. Having my eyes closed, then open, then closed again…. Breathing a certain way for three minutes…. That triggered one of my spasms where I stop breathing, but I couldn’t tell if she didn’t catch it or just remained calm waiting it out. Next came the strobe light. Even with my eyes closed as instructed it set off a torrent of spasms. She kept typing away, I presume writing what she saw since there wasn’t a video being done?

And then, she asked me to get comfortable and try to go to sleep…. I was still dealing with the after effects of the strobe light but trying to relax… I didn’t know if I was ever going to go to sleep though, not now. Every few minutes she would type something with the clacking key board, I heard the receptionists come in to the office, and heard them talking…. I was getting frustrated and wondering if we were going to have to resort to a sedative after all. And then, I heard a door slam, and the technician was loudly telling me we were done and that I had slept really good and must have been really tired! I believe her that I slept but certainly have to take her word for it!

So, it’s done. I’m home again, and get the week off next week from any appointments which will be nice. Just enjoy the Thanksgiving holiday. Then the next week will be my follow up appointment to hear the results of all the tests and learn what his game plan is… I have to remind myself to just expect the unexpected because there is a million ways it could play out and I don’t need to torture myself wondering how it will be when it is likely it won’t be anything like what I thought anyways. And be thankful. Thankful these tests are behind me, and thankful this all is going at a faster pace than ever could have been hoped for.

Please, please help me!

Last night I kept waking up going into full body spasms and unable to breathe…. I would beat the bed with my fist to wake my husband so he could do something, at the very least be aware of the situation I was in and hopefully his rubbing my back would trigger a release.

That last one continued so long it scared me…. I usually do my best to be as calm as I can, but to wake up and go into not being able to breathe and then it just keep going on and on… every second hung still for what seemed like eternity… It was terrifying…. I can’t keep living like this…. I really can’t!! I wake up this morning muscles pulling in their dystonic way throughout my body. My chest is hurting, not sure just how much is residual pain from the spasms and how much is the touch of respiratory bug I have been trying so hard not to catch from those around me…

The tests so far have been less than pleasant, ordeals would be better descriptions…. The MRI was torture, for a movement disorder patient who has claustrophobia who has bad veins… Yeah. It was awful. I was a good girl, I did my best to hold still (the contraption that held my head helped that, but didn’t keep my leg from twisting around)… I refused to open my eyes and see just how small of a place I was in…. I so badly wanted to hit the panic button, because I was panicking, but I wanted it to be done and over with, and pulling me out would only prolong the ordeal…. By sheer will I pulled myself from the brink of pushing that button over and over again…. Then when it came time to shoot dye into my veins he couldn’t find a place to do it…. I still have bruises from when they drew my labs… He was a nice man, but physically a tad clumsy and not so gentle trying to get a vein to show up…. Slapping my arms, scrubbing with the alcohol pad on the bruise on my hand making me wince and toes curl…. After a failed attempt he finally found an injection site that would work, slowly injected the dye and then sent me back into the machine with my arms not not in the same position they had been before, which literally made it a tight squeeze, I was feeling the cold rounded wall of that machine with both arms confirming just how small that thing is and I went into panic mode worse than ever…. I shifted my arms a little and lied when he asked if I was ok, because, it’s only a few more minutes and I wanted it to be over.

As we left the room I still hung onto my brave “I can do this” front… He offered a wheelchair, but I said my cane would be fine…. I should have started out in a wheel chair the second I entered the hospital, but due to my stubbornness I wore my twisted self out trying to walk to and from the MRI unit…. I insisted on getting a milkshake before going home, but somehow I was still incredibly cranky and totally wiped out when we got home and wanted nothing more than to be in bed and left alone.

I have the sleep deprived EEG tomorrow and I can’t see it going any better… The glue they use to stick the 27 or so electrodes to your head stinks something awful and is something that my chemical sensitivities reacts to…. At least, that is how I remember it from last time…

To be honest, the closer I get the more I’m dreading my follow up appointment…. As hard as long I’ve been fighting to get help, as bad as I need help, you would think I would be looking forward to it, but instead it still scares me…I have no idea what he is going to say, and if he sticks to his word and tries to help me I know the treatment options have their own set of consequences… A lot of these meds can have pretty significant and horrible side effects. Knowing my past experience with reactions and how sensitive I am to medications this could be the start of months if not years trying drug after drug to see what will help, if only slightly, without being too far out weighted by side effects. It’s all scary to think about, for me, for my family….

But I need help… I need help so very badly. I can’t keep getting worse and worse like this, I can’t keep not breathing…

Just Listen to Yourself!

I’m the type of person that has a plan for everything. Whenever there is something that needs to be done my mind is already several steps ahead of the task thinking through the most rational most efficient way to get it done. I’m a very logical thinker. Things must be done right and need to be accomplished in a certain order and a certain way. It needs to be done with adequate speed and not be derailed by distractions…. If something is not getting done “right” by someone else I feel I must take over and do it myself.

Being chronically ill does not mix well with this type of personality. It’s frustrating enough to not physically be up to doing what I feel needs done, but to watch others do it totally different than the way it “should” be done, or higher priorities being totally ignored for lesser ones is maddening. If certain requests are completed in a totally different manner than expected, or specifics are ignored it’s enough to cause resentment and even anger….

I know, I really have a lot to work on, I have no excuses… It’s easier to give a “free pass” to someone who doesn’t know how I would usually run things, but sometimes even then I struggle inwardly with being resentful they didn’t at least ask how I wanted it done, or what I thought should be accomplished first.

This is open confession time, and I have to be painfully honest with myself… It’s harder to keep my mouth shut when it is with those closest to me, those adults who are sharing the majority of the load around the house because I can’t… And as I find myself yelling “why didn’t you do ______ this way?!!!” I get transported to my Grandparent’s home and I can hear myself sounding just like my Grandma yelling at Grandpa…. And I feel horrible…. One, because I just lost my patience and yelled at the person who means the most to me. Two, because I realize I’m turning into my Grandma more every day in every way, even ways I don’t want to. And three, because I finally realize why she yelled so much. I finally understand how horribly helpless and frustrated she must have felt with being chronically ill and things always being done different than she had hoped or planned.

Being of this type of personality doesn’t mix well with chronic illness… It’s better suited for successfully running a company, or a household of many little ones, or a whole host of other management possibilities… Not being stuck in an uncooperative body feeling helpless as you have to let others take charge and watching things not getting done because they are of different priority for others…. Not being able to control our own health makes us even more desperate to be able to control something in our little world, making us more cranky than ever and nitpick over things that truly are pretty stupid to be upset about.

Next to my health issues, this is one of the biggest battles I face. Being okay with things not turning out how I hoped. Being okay if things are not done in the right order. Being okay when someone I thought was helping with a certain project got distracted with something else. Being okay when someone else’s logic doesn’t match mine.

Patience does not come naturally or easy for me. I need to work on that. And being able to let go, even of the little details. I need to listen to myself, listen to my thoughts, listen to my words and learn to temper them. Yes, this all is incredibly frustrating for me. It’s really difficult, the combination of personality and illness, but I’m not the only one suffering, I’m not the only one who has it hard because of this. I need to find more free passes to hand out to those who are the closest to me, because they are suffering too and just doing the best they can.

I need to listen to myself. And ask for forgiveness more.


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