Heathers Truth

Today I have shared my new blog with different people in my life — old friends and others for an opinion.  I think I will continue to write and try to keep the information from stacking up inside.  It may not always be grammatically correct so please do not judge me on that.

I used to write and read daily and now my brain barely seems able to type, write and make sense of much if I am not concentrating just on that task. I lose where I am in conversations and forgetting words is almost always a given. Multitasking definitely went out the window…..

Who knew I would miss using a computer or writing lists and orders.  I get very frustrated when I can not write so I can read it.  The tremors are not even at their worst. My pen collection sits unused (lol).  My amazing craftroom seldom visited.

I’m a reader and with the almost constant headaches and migraines I find I rarely read right now.   Growing up that was how I entertained myself and even years later as an adult it was a fixture in my life.   I miss holding a book, but the amazon kindle app on my phone has helped with that grief.

Several years ago, I started hunting with my husband and son.  The tremors this year kept me from even attempting to take a shot.  I enjoy shooting with my handgun and it of course has its own problems — I don’t have the strength to pull  it back most days, load or fire with a steady hand.

I just hope with new meds that I can resume some of these activities.  I know I am not handicapped I’m just a frustrated 42-year old woman with chronic medical issues.

Today and other days I have discussed fibromyalgia with so many others and things that have helped over the years. Until I was diagnosed, I had never heard of it and now there are a lot of others in similar situations.  Now with Facebook groups it has made many difficult situations like cancer & fibro easier to deal with.  I joined a BC group that is pretty much all humour…. Yes folks I finally get the funny on most posts unlike before.  Comedy and I are friends now 😉

The time change creates a bad scenario for many including me.  Too dark in the evenings to allow for any time to enjoy being awake and with the family – anyone else have a 7 pm bedtime right now?  The holidays come and go and often anxiety and depression have crept in over the last few years.  It never seems like it is the fun and magical time is was when we were growing up or even when our son was a baby.  I guess it is to be expected.   Not working probably isn’t helping.  I’ve been trying to help out with candy and cookies with family, but only have so much interest in the Suzy homemaker stuff & as I tire or stand to long the shaking starts. I have never enjoyed being in a kitchen.   I do like spending time at my folks. 

I’ve been without insurance for awhile and trying to catch up with my medication refills and start new treatment. New insurance also means different medications are covered.  My body dislikes medicine changes.

Soc sec was denied.  So I appeal.   When I was at the rheumatologist before the letter came last week it sounded like the Dr was a bit frustrated that patients with fibro as a primary reason continue to be declined.  People still do not realize how debilitating it can be.  Chronic pain, muscle spasms, fevers, inflammation, sensitiviites to just about everything from something touching your skin to light or even smells can have such adverse affects on home life, personal mentality, confidence, finances and so much more.  Just not a whole lot of fun.  I’ve personally been at my whits ends; both mentally and physically exhausted.  Now I have the side effects of the hormone suppression medicine including SEVERE hot flashes, changes to the look of my breasts and Huntington’s Disease along with my fibromyalgia.  I wonder if I will ever feel normal again; probably not 😞 and I guess it is time to get a new normal – again!    My sleeping schedule really is affected by the hot flashes, running mind full of anxiety and wonder 24/7.  I can stay up for days until I finally crash.  The fibromyalgia pain and severe migrajnes become too much.  My tremors and moving limbs also increase even on meds.

I had a fairly good visit with my oncologist this week and we discussed the hormones that have put me into menopause at 42. I will be taking the Lupron shot for some time.   I did have a bit of a raised result on bloodwork last Friday; so repeated Monday.  I haven’t heard anything to see how the results looked.

Today I had a follow-up with the migraine specialist in Pittsburgh. She is just as sweet as can be.  I definitely got lucky when I was referred to this group for the movement disorder & migraines I was continuing to have. Thank God my husband was able to drive to my Mom’s & my appointments. 3 appointments in the city and only 1 trip – Score!!  I just knew i couldnt do it even before i woke up in the middle of the night with bad bad muscle spasms in my back & legs.  No extra bad news at either visit so moving on with some med changes.

Life has to go on and even though the soc sec letter says I should be able to do a job and function — I just keep thinking how in the hell can I do that, how can I work and not be able to write legibly and how can I work when I know I can’t remember or function like I could even 2 years ago…. I have been off work nearly a year.

I hope and pray every day that the medical community continues to work towards cures or help for chronic illness like Fibromyalgia and diseases like Cancer and Huntington’s. Will you do the same?

It was so emotionally draining to tell my son about the family diagnosis.  Eventually he will be tested, but not right now.

We have been surrounded by colds, pneumonia and other viruses for quite a few weeks.  My Dad hasn’t been feeling so great lately.  Finally getting some relief with a med pack and cough syrup.  It is so rough looking at your parents aging.  Yeah aging is inevitable, but as my Mom and I discussed today…..he seems to be aging faster than before. As I read papers and HD info, I see many of the symptoms in my Dad.  It saddens me to see this.  Other times it isn’t nearly as noticeable.  My Aunt was told that HD is often exasperated by stress and other health issues so maybe that’s why I’m noticing it alot more lately.  I pray for strength to assist my folks as long as I possibly can and to assist my Mom and Brother in the years ahead with Dad. We all are considered caregivers and will face some rough decisions ahead.  I can’t imagine the day we have to tell him no more legal decisions, no more financial responsibility and probably hardest of all would be no more driving.  Hopefully it’s a few years away.  I think it’s even harder realizing at some point my family will be making the same decisions for me.   Independent living and making decisions for myself is definitely something I will miss.  How can it be handled in a way as not stress him and later myself; I wonder?

FML & HD have definitely altered our lives.  I often wonder why my family, why my Dad, why my brother, why me? I never thought as a teenager or young adult that my life would change so drastically.

There is always always always someone worse off than you – yet another reason to be thankful for.

I do have to give many thanks that we aren’t sick every day as bad as the worst days, that I’m not more clumsy, more forgetful or having more tremors.  It seems even functionimg one better day or a string of okay days often results in a painful day or days to follow….sore skin & muscles, sore swollen joints, massive headaches, low grade fevers seem to be the norm.  I often need days to recover from standing to shop for groceries even.

Aunt Viola is sick and is having complications of pneumonia and/or pneumonitis and visiting her is scary.  I catch everything it seems to go around again and again so I worry about visiting.

After a hectic day tomorrow, I’m hoping for a relaxing Thanksgiving and the weekend after.

My Dad’s family carries the HD (Huntington’s Disease) gene.

I’d never heard of this disease before and had to do a lot of research when his younger brother passed away. Several family members were tested shortly after and tested positive; my Dad and his sister among them.  Not many of the family were tested; myself among that number.

2017 ended with me in the hospital just before Christmas.  My depression and anxiety coupled together with fibromyalgia pain and a heel fracture had left me feeling alone and out of options.  I lived in a house with my husband and son and felt like no one saw me.  Not even two weeks later, I was getting a routine mammo and received a message a day later to call the doctor back.  Right then in my ❤; I felt like I knew what I would find out.  An ultrasound and biopsy showed cancer in my left breast.  I felt energized and ready to get it out clear up to the surgery date and a few days later after an MRI was taken they found a possible site on the right side.  What a horrible feeling that was; physically, emotionally and definitely mentally draining.  At this point, I knew I needed to be out of work.  I could no longer think about the surgery and perform as I should at work. After a painful MRI biopsy, the right side was cleared.

Surgery day rushed in days later with a massive snow storm and a long day.  I woke up with a stupid virus and felt like dirt for days.  I started to feel somewhat better, but never really got back to pre-surgery me.  I went thru a horrible bout of cellulitis/c. diff for months and after losing over 20 # and a red burned breast, I was done with the daily radiation therapy.  I never really got better…….neurologically my body was a mess.  My limbs jumping and my tremors more than jumping every hour of every day and migraines that never left.  I visited a movement disorder neurologist and only days before losing all of my health insurance until November.  October faded into November and it was hard to stay patient for the results of yet another test result that would change my life.

Fibromyalgia and c. diff limited how often and when I could leave the house.  My tiredness often meant days slept away on the couch.  Meals and opportunities missed with family because I felt too tired to join in.  But even as my energy returned, the feeling of foggy brain and migraines wouldn’t stop.

Visiting the neurologists showed that I didn’t have MS although I did have a motion disorder and vicious migraines.  My anxiety and blood pressure continues to spike even now in November.  I was given medication to help the tremors & gait as well as the restless limb syndrome. Bloodwork  was sent off to the Mayo Clinic.

I met with the Neuro Dr. and it happened; my test result indicated a positive test for HD at a repeating gene/CAG of 40.  My father also had the # 40.  He didn’t show signs of the disease until he was probably in his 60s.  I am 42 and have had signs of the disease including tremors etc for at at a minimum of 5 years.  Tremors & restless limb syndrome has helped already with the medicines I was given in September.  Due to the c. diff history and my sensitivty she recommended that I not take a usual antibiotic and start with adding two new vitamins to my daily care. I am trying to  stay positive and find a “good” way to tell my 14-yr old son, who already has behavior and social issues, about this diagnosis.  Cancer is easier to describe than  getting him an understanding of an illness that I may have given to him.  [We didn’t know about the family history until after my miracle was born.]

Thanks for joining me!

I found myself being off after radiation for cancer not feeling so great; even as my tiredness waned; the migraines and tremors worsened. I often wasn’t able to get to sleep; staying up for a day or so at a time.

Losing insurance kind of forced the neurologists to take a peak at my abnormal MRI and send me for additional appointments.  Crazy month of September.

Fibromyalgia, High BP, Breast Cancer, Lymphodema, Huntington’s Disease, Gerd, Depression & yes Anxiety have often stopped me in my tracks — radically made changes in my mind but not physically in what people see.  I am more than these diseases.  Be careful who you disrespect because as I have read many times – you may never know what challenges or realities he or she may be living with.