Good Morning!

I don’t know why but yesterday waiting for the massive snowstorm to come and did a lot of snoozing and searching through forum posts & talking to others online; I started to think about when I know things started to change with me.  I’ve had some depression and anxiety with my fibro.  I know my concentration and ability to push thru the pain without meds (no pain meds) had continued to diminish and even when I wasn’t in a flare I worried about being in one and what in would have to change to accomodate my body that day.  Adding gabapentin and steroids and changing other meds really changed how I was able to get around and I couldn’t process payroll or work on a spreadsheet for more than a few minutes.  I had to give up my new job because I couldn’t do it.  I was off for about 3 months before my 401k money ran out.  Yes ran out. It was from my 6 years of working prior to changing careers.  I did this in 2014.  I went from working a job where I used spreadsheets I would build and use 40 plus hours a week to not being able to get thru working on a system for payroll.  I was often too tired to get thru an entire day without taking my hour lunch as a nap.  I just couldn’t continue to constantly worry about paying someone or a union incorrectly.

I decided that kind of more qualified job wasn’t for me at that time.  I applied for other jobs of what seemed like less worry and stress for the next few months as I got used to the way my body/mind had changed.  I took a customer service job at a close by local company.  It wasn’t what I was used to doing, but I caught on pretty quickly.  There was still worry and stress just a different kind.  I often only worked 40 hrs. I was doing okay.  There were flares or headaches but none that lasted weeks.  Fast forward a year and I have been told I must learn a new way of doing my job and completely different rules, different country and tasks for a coworker leaving on maternity leave.  I was not excited to do it, but starting it right around Christmas wasn’t good.  I just couldnt learn some of it and relied on notes and corrections to get me through each month.  I thought I was doing okay.   Most of every day was spent pulling my hair out.  I was often frustrated and even in tears at lunch while I put my head down.  I had gotten a virus while training with my co-worker and had it for months after.   I had a test done to remove a sample of what might have been a form of cancer in my throat.  So just kept attributing my inability to conform to the temporary job as a product of the timing and how I was feeling.  It never really got easier.  Upon the coworkers return we found out that I hadn’t done some things right. I also had been following incorrect pricing prior to the coworker leaving that wasn’t caught.  I really did try, but it was a very stressful time before the coworker came back and after. Personally I lost self-confidence in myself and my abilities.  I knew I did my job pretty good and could keep up with the different tasks thrown at me.  I just decided to ride it out.  As time went on I noticed that I was having to use a phone list for numbers I called daily, had problems writing some days due to a tremor I had had a few years that seemed to be happening more and more.  I couldn’t remember everything in my process some days.  I relied on postits a lot.  My coworker who had fibro like me was often a sounding board because we just figured it was my fibro and how I had to deal day to day.  I would get these episodes of a feeling of internal shaking or shivering as well as severe hot flashes and then freezing.  I was napping daily.  Migraines like the tremors were happening more often.  I was getting every germ that went around and then again as it made it through the office.  Yeah that alone was frustrating.  Summer came and I noticed my foot was really bothering me.  I tried to keep walking but within a few weeks I could not walk unless I was on my tiptoes. Ugh it made for a very very long day.  Three months and I was in a boot at the end of November.  I had had adhesions removed from my belly and couldn’t walk after being off of it for the few days of healing.  They couldn’t see a fracture on the xray but felt it was a stress fracture of the heal.  F&$& my life.  My kid had been acting up in school more than usual and this just all escalated over the month of December 2017.  My anxiety was thru the roof.  My BP was thru the roof.  My pain from the foot and walking in the boot was enough to make me cry.  I think I just shutdown after that.  I got most of the shopping done and work presents together for a few days before the holiday.  My dog took off through the house for about an hour that morning and I was unable to catch him before being late for work. I made it to work hurting and holding back tears.  I walked into my boss’s office and told her of the horrible sadness and the inability to cope that day.  I was a mess.  I was sent to the ER where I was admitted later that day.  By the time I was admitted I was even more of a mess worrying about how the family was going to get thru the next few days and what this would mean for me and work, etc.  It was decided that my antidepressant should be increased.   They did that and sent me home a day later.

So I am thinking about this all last night and how my body had been handling stress and changes in response to questions from other people with the same HD, or at-risk, or caretakers that are living with or around this horrible horrible disease.   I realized I don’t think I have really had much control over how emotional or how much a fibro flare was affecting me on a daily basis in a very long time.  At the time, I just thought I was going above and beyond what I thought needed done to stay on task. The inflammation and nerve pain have been lowered by medications, but are not gone. The forgetting how to write numbers and using notes all the time that happened I attributed to fibro fog or whatever I was going through that day.  It didn’t always make sense, but I couldn’t get answers or an explanation any other way.  The depression pretty much leveled out for a week or so and then I tested positive for cancer in January 2018.  So the anxiety depression fibro fog etc was at extreme level inside but jittery on the outside.  I lost it when they thought I had it on both sides.  The test to check the opposite side was very painful and I was happy, but not any less depressed about the process to come.  My migraines and tiredness throughout December 2017 and January 2018 made life difficult.  I went on short term disability as of 1/31/2018.  I have been off since.  My abilities have changed to a point I can’t do the jobs I have done my entire life. Less stress of not trying to do the job daily have helped, but every time I try to type or write, I end up frustrated and embarrassed a lot.  My beautiful writing is gone and migraines were really getting worse. I think as I stated in an earlier post, that the cancer & radiation and all of the issues with my immune system and general health were exasperating the HD symptoms.  While off after the cancer, I was noticing that I was losing my place in a conversation a lot more or not being able to find a word I wanted to use every day.  I would walk around two or three times and forget to do what I was supposed to be doing.  Migraines continued to get worse. I forget to pay bills.  I forget to cook supper.

I had been falling occasionally or even a lot for about 12 years or maybe longer, but this summer I actually hurt myself doing so.  Three times in less than a week.  Then I thought back to a few summers ago when I fell on vacation.  I fell 6 inches maybe and broke my leg and severely sprained both ankles as well as tearing up my legs.  I didn’t heal well afterwards.  I had a similar bruising and healing time this summer.   I was losing my balance this summer and that caused the falls.  I was walking into walls or furniture it seemed like daily.  My body would often spasm or shake in my sleep all summer.  My son often worried I was having seizures.  My husband and dog got kicked out of bed some nights.  I think this is what finally pushed the neurologists to look at MRI history.  Since nothing had changed since 2013 on the images, I was sent to a Neurologist group in Pittsburgh when I denied another spinal tap.  I knew it would make me very sick just like the prior 3 did.  This ended up in several weeks of constant appointments before my insurance was gone.  The movement disorder specialist noticed HD symptoms and with family history tested me that day and gave me medicine to help with the constant movements.  It really helped a lot in the first few weeks especially at night.  Some help with the tremors.  I am also taking the vitamins that she recommended.  Since then we have discussed when the tremors and MRI last changed and guess that it started showing the HD symptoms as about 5 or so years ago.

So fast forward to yesterday and my discovery of these forum posts and articles online…I really think many of what we thought was fibro was early HD symptoms.  I had never been around anyone with early symptoms except my Dad and he wasn’t all the same as me anyways.  I get so anxious when I’ve gotten lost in the hospital that I was ready to cry and sit down on the floor…a hospital I had been to prior and knew where the office was.  I barely made the appointment.  My blood pressure is outrageously high as well.  I can’t drive and hold a conversation or while there is chaos in a vehicle like before.  I get so distracted and angry with someone trying to get my attention while I’m driving. My reactions when driving have changed.  GPS has become my dear dear friend along with Google maps.  My memory over the last few years has increasingly gotten worse.  I went from being a multitasking fool to a barely able to do one task at a time kind of person.  Tough changes as I am aware of it happening.  I am also more aggressive in my responses of anger.  I’ve always been strong about my opinions but this is more.  I also have stopped crying.  I would rather stay at home by myself.  Sleeping and not reading or crafting has become a best friend.  I may sleep a lot every day and then not sleep for days.  I haven’t leveled out to a regular schedule.  I eventually crash either way.

I kept thinking and even dreaming about these thoughts last night as I slept for probably 12 hours.   I could not get this out of my brain.  I have a lot of questions for the HD neurologist in February.

I am now awake (obviously lol) and my mind is racing trying to keep up with my thoughts.  My hands unable to type OK even on my phone to allow for me to express my thoughts before I forget mid-paragraph in my post.  I usually go back and reread and check typos but even I sometimes have no clue what I meant to say.  So if there is a crazy long spot, I am so sorry.  I am however very thankful I can talk with those individuals online or read small articles about the condition or show my Mom.  I’m helping myself deal with my changes and helping her become more able to help my Dad.  I’ve been able to answer questions online from things that have happened to me and the response I got from a doctor and help guide someone else to the right doctor .  I’m also getting even more of a feeling about what might be to come.  This I try to take in but not dwell on.  I need to learn not worry!!!