Of Storms and Peace

Navigating this road called life

Triggers: Pain

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

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

And then, I fell.

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

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

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

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

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

Looking Ahead by Looking Behind

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

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

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

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

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

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

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

Progress: Finally in the Right Direction

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

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

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

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

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

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

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

20 lbs: Bitter Sweet Victory

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

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

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

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

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

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

Pushing through side effects

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

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

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

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

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

Don’t Give Up

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

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

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

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

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

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

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

I’m not Asleep, I’m Trapped

I counted… It’s been 5 days since I was last locked up and unable to get out of bed due to my legs and back being so twisted. Those 5 days I pushed through the spasms and pain and tried to get some things done around the house. Thanks to the baclofen I was dealing with crushing fatigue. I looked forward to naptime and bedtime the most, it meant a chance to lay my weary body down and rest. I went to bed early every night, because I simply didn’t have the energy to sit up on the couch. I was miserable, but at least I was functioning somewhat.

Today in addition to the fatigue I was dealing with the start of a migraine. I laid down to rest, and eventually couldn’t keep my eyes open any longer and snuggled down to try to get some sleep. I knew I didn’t have to worry about the children since my Mom had arrived and was available if anyone needed anything. So I was free to just relax without worrying about anything. As I would start to drift off I would feel like I was suffocating and rouse up enough to take a deep breath. It kept happening, but eventually I did sleep a little. But then the children got up, which of course woke me up. I knew right away I was in trouble.

I couldn’t open my eyelids or move, my arms and legs were all twisted, my jaw clamped shut, my eyeballs pulling and flitting around one way and then another, snapping back to center between each contraction of the muscles. I wasn’t thrashing around on the bed. I was simply trapped, and in pain from the muscles twisting and pulling so tight. All I could do was try to relax and dozed off a couple of times. The kids were being super rowdy though, so I was never asleep for long.

Eventually one child and then another came in to check on me. They kept saying “Momma’s asleep” or “Momma’s trying to sleep, leave her alone” and would shut the door. I wasn’t asleep. I was trapped. I was frustrated. I was miserable. Every once in a while my heart would feel like it was racing, or I would feel like I couldn’t breathe. I began wishing I could just die. I was serious about it. Suffering like that is no way to live. I just wanted to be free of this miserable body. To remember no more that helpless feeling of being trapped. But, of course, I didn’t die. The time crawled by too slowly. Mom came in, but then left and shut the door behind her. I tried to tell her I wasn’t asleep, but the only sounds I could make were “mmmmmmmMMMmmmmMM!” In a cranky sounding voice. My husband called to tell me he was on his way home from work. I couldn’t answer the phone. He called a second time. I still couldn’t answer. I had so much to say, and no way to say it, and ohhh my jaw ached from being clamped so tight!

Tears finally squeezed their way out my eyes and down my face. I was so frustrated, so sad. Hubby came home from work and the kids told me he was here to help me. He came in for a moment or two, but since I was laying there with eyes closed and unable to communicate he too left the room to deal with the children. More tears. Finally my eyes sprang open. I tried to holler to get someone’s attention “MMMMMMMMmmmmMMMMMM!!!!” They heard me… One of the kids started hollering “Momma’s eyes are open!! Momma’s eyes are open!!!” My husband came in, and I burst into more tears. There was way too much silence. Inside I was screaming. Just because I can’t talk doesn’t mean I can’t hear! He finally talked about the ideas they had for supper. And I finally was able to make enough noise and slight gestures to make him understand that yes, I needed the bathroom.

As usual that was quite the feat to get me there. But it turned out to be the relief my body needed. All the other spasms let up just a little, and speech started to come back. My first words were “I. Ne..ne.need a hu..hu.hug” Trying to get back into bed, my little 4 year old was cheering me on “come on, come on Momma, you can do it!” once I was in bed she cuddled up next to me and snuggled for a bit. That was some much needed therapy. I was so glad to be able to connect with all my children again. We all needed it.

It still took me another hour to really regain control of my speech and movement. I’m still in bed, wiped out exhausted but at least I can function again, and I’m no longer trapped.

The Way it is

I haven’t written in a little while. Life has just been a struggle lately. The diet has been helping me lose weight (and hopefully means I’m getting the insulin resistance under control) but it’s a lot of extra thinking, extra work, and takes tons of self control. It will be worth it though if I can keep from adding more pills to my regimen. Speaking of medicine, I still don’t know what to think about baclofen for my dystonia, whether it’s really helping much. It may be a little, but not near as much as I had hoped, and the trade off, the fatigue and weakness, the increased fall risk and general unwell feeling from it hardly seems worth it. I’m still trying to give it a chance. And trying to increase it like the Neurologist recommended to see if that will make a difference. It’s all going painfully slow. My body doesn’t tolerate increases very well, so it’s been a tiny bit at a time.

I’m struggling every day. Trying to overcome. I push through so much pain, trying to ignore it. I spasm so hard, and still try to function. If I can walk at all or keep my eyes open I try to do some normal household chores… If I can sit up, I still try to keep working, folding clothes, mending items, whatever needs to be done… I’m always wishing I could do more, what I accomplish is a pittance compared to what needs to be done around here. Just when I think just maybe the meds are helping me function a tiny bit better I end up in bed locked up so bad I can’t get to the bathroom without help. If I’m honest, while I try to think of the positive, I still struggle with being frustrated and disappointed that the medicine doesn’t seem to be helping more.

I actually have moments that I would like to dump all my pills and go med free again. Living without side effects is nice. BUT, I’m beyond that point. I have to remind myself that I worked hard to stay drug free for years, but finally progressed to the point that I have to have medical help. I can’t keep getting worse. The Doctor is trying to help slow the progression and help me function better. I hate side effects. I hope somehow eventually we can find the right mix of meds that I can tolerate well enough and that actually make a difference and help…. There is no cure, for now, so I have to hope for some relief in other ways. And, I guess, learn to accept that there will be some trade off for any tiny measure of relief we might find.

In the meantime, I’m cherishing making memories with my little children. Giggling over dance parties or saying silly things into a voice changer… The hugs and hearing “I love you” time and time again are the best. It makes me forget all my troubles for a moment and just be thrilled to get to be a mom. I am so thankful for my support team, both physically here at home, and virtually online…. The people who understand the unpredictableness of my disorders. Those who rejoice with me over the good days (or hours) and help me through the bad. There is nothing quite like having someone help me get to the bathroom, or listen and encourage me when I feel like I can’t take it anymore.

So, I’ve not written much lately. Been too busy trying to get other things done, or too sick to write. But that’s the way things are for now.

Cognitive Decline

I have several ideas for blog posts running through my mind, but as I sat here suddenly all confused trying to figure out just how I was supposed to make a new document (something I should be able to do without thinking) I decided now is the time to speak about this subject as I know I’m by far not the only one who suffers with this.

The advantage of using a computer to write and blog is that I can sound relatively normal. I can take my time, delete things, and rewrite things until they make sense. If my mind goes blank no one can tell because they don’t read a long pause. Already I’ve deleted and rewritten just about everything in this post. A few words here, a sentence there…

My cognitive dysfunction comes and goes, but it appears to be getting worse. I believe the medicines can be somewhat to blame, but I don’t think that is the sole cause. Sometimes I can think and speak perfectly fine, other times it’s obvious to anyone who hears me talking.

I’ve been thinking more about this lately and I’m pretty curious just how it all works. I can see this being my next subject to study as I find time. It seems in my case verbs are the most common part of language that chooses to vanish into thin air. I’m thinking, or speaking as the case may be, and suddenly what was there is gone. Secretaries and doctors are usually quite kind and patient with me. My family members either wait while I just stare at them, or help by trying to fill in the blank. It can be funny sometimes, other times it’s purely embarrassing or very frustrating. I just “had it” and then it was gone and I have to frantically fish around trying to find it again.

Confusion can be a (hopefully temporary) side effect of the baclofen (or so I read) and it seems it has been aiding my mix ups a bit lately. I don’t know, I was doing some of these things before more than I would care to admit, but it seems to be more frequently lately. Like standing in front of a closet door trying to figure out what I was supposed to get there only to finally realize I was supposed to be getting something out of the refrigerator.

A few nights ago I stood in the hall so baffled and confused trying so very hard to remember what I was getting ready to do. I looked into the bathroom and saw my pajamas laying there, I knew I was going to get ready for bed, but there was something else I was supposed to do first. I stared at my clothes laying there, I looked at my husband, back at my clothes, then at my husband again… I was becoming distressed over it all and wished I could ask him what I was supposed to be doing but he would have had no clue what I had previously had all mapped out in my mind. Eventually piece by piece it all came back and I got done what I had set out to do, with a mixture of relief and frustration.

The good part is, so far, I always eventually remember. Even if it takes half a day, I still finally remember. The bad news is, it’s slowly getting worse. I am going to have to get smart about this and write more notes to myself. I already depend on routines to help remember important things, but notes would help with more things…. I wouldn’t embarrass myself half so much if I would write a doctor’s name down before making a phone call to their office… Going over their name over and over again in my mind before the phone call doesn’t do me any good, I still end up saying “is Dr,_______ uhh, ________ umm, ______ uh, just a min… I’m sorry, Oh, is Dr (right name) in today?” if I had it written down on paper I could saved myself the trouble!

The thing is, I’m organized, I think logically, have things planned out in my head almost always, and so it makes it that much more frustrating when my mind decides it doesn’t want to cooperate. I think my brain has forgotten that I’m still comparatively young and it’s supposed to keep up better than it is.

So anyway, I write all this as a way to open up discussion and dialogue about how our minds choose to not keep up. I know with many of the conditions I and other people have there are things like “brain fog” and confusion and word searching and more. It’s something that isn’t always comfortable talking about. It’s hard enough to admit it to myself that my brain isn’t keeping up, let alone talk about it sometimes. I want to appear “normal” and intelligent and capable. I want my mind and thought process to work at an optimum level and not fail me. But don’t we all?

A Pain in the Chest

For those of you who were worried or were wondering. I’m home from the hospital, my ultimate diagnosis is “chest wall pain” but I may end up having to have some more tests run to try to figure out why my EKG readings were different than last time. I am told the risk of anything serious is very low. And everything else checked out fine.

In short, I’d been trying to ignore chest pain for nearly 2 wks now that I assumed was either residual pain from the virus I had had or a pulled muscle or something. Seemed similar to what I’ve had in the past. But it was right below my heart, so a little part in the back of my mind nagged at me wondering if it would be prudent to have it checked. Thursday evening I had a horrible night, with a whole host of things acting up, and I was pretty sure a lot had to do with my body throwing a fit over trying to increase my baclofen. The chest pain was worse and I was experiencing heart palpitations. I was in pretty pathetic shape by morning saying I needed help.

I was desperate to avoid the ER, as I’ve gone down that road with an other sort of chest pain only a year and a half ago and knew what all that would entail. I almost succeeded, my Primary doctor felt comfortable with her dx until she saw my EKG results. The oddities were very slight and minor but she said she would feel more comfortable with getting some blood work done and an x ray… That I was willing to do, and went in. They acted like the EKG readings were no big deal, but ended up not letting me go and I got stuck in the hospital for 27 hours. And, I have to admit I wasn’t a happy camper. Oh I was nice to all the wonderful kind people who took care of me, just inside I was pretty grumpy, and let it out a few times for only my husband’s ears to hear.

I’m always a hard stick as they say, but this time my veins were being worse than their usual selves. I ended up being poked with needles 12 times within 24 hours. Almost every attempt to get some blood work required calling in reinforcements. Everyone was so kind about it and felt horrible, but that’s just the way it was. Thankfully, they succeeded to get an IV port in after the 5th attempt (with just about as many people trying), it was painful in my hand, but they saved me from the ER doctor’s suggestion of “we can always do it in the neck” (YIE!)

There were so many things that were frustrating how things were handled, there were issues with my meds, and I only got to eat once (for that though I have to thank a wonderful nurse who caught the fact that I wasn’t even in the list to be fed and demanded that they call me and give me options what to eat and get it to me as soon as possible) I had a really hard time not focusing on all the things that weren’t going right or the way I had hoped… But I have to be truthful, everyone was so kind, and once I was moved from the ER I had a private room with a private bathroom and my heart monitor (once I finally got one) was portable so I was free to get up and move around as I needed without having to ask for permission or help which was a wonderful thing (all improvements from what it was like last time at the other hospital)

Despite my meds being messed up, my spasms behaved better than I thought they would, they were still there, but I didn’t go into full blown storm or anything. The neat thing is one nurse read up on dystonia because of me, and talked to me about it a little. I was the first person she had ever seen who has it, at least as far as she knew. I’m just glad I didn’t go into a storm, I was so concerned that would royally mess up my timeline for getting to go home.

As it was, I was hearing rumors they might be thinking of keeping me the whole weekend. I was determined that was not going to happen if I could help it. Thankfully by the time the Dr finally showed up he was of the opinion that I would be better off going home, such words were never sweeter to hear! I was relieved that I wouldn’t have to try to talk him into letting me go.

I have to admit, in the wee small hours this morning I would have told you that I never ever wanted to see another doctor in my life for anything ever again, but by now I’m actually looking forward to my follow up visit with my PCP to pick her brain about why she thinks my EKG readings are different from a yr and a half ago. It has me curious. I hope and pray no more tests though… I was denied the regular stress test when they came to get me for it because of my using a cane and being a fall risk… So if that is determined to be necessary it will have to be chemically induced and there are a multitude of reasons why I so desperately want to avoid that if I can. But we will see what she says.

I’m so glad to be home. Due to lack of sleep, all the needle pokes, not eating, not getting all my meds, etc I’m in a lot worse shape than when I went in, but hopefully I can get some things caught up and evened out and start feeling better soon. I still don’t know what to think about the baclofen, but will just have to take it a day at a time. I’m sorry I scared some of you. I was more annoyed by my situation than scared, not sure if that was good or bad. Thank you everyone who prayed for me and checked up on me. That meant a lot.


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