Questions of Life

Life after a death in a family…..

It always always makes me question my faith and attitude towards different aspects of life. Questions on what if this would happen to our parents, spouse, son, brother, close friends, etc and how I don’t think I am able to handle it. I watched how strong some of the immediate family was and I too was until the end of the service. It is very hard for me to even express true emotion some days. Huntington’s or meds are taking away my ability to be who I am. I’ve always been a very empathetic person as well as sympathetic and the empathy is not near as much. I don’t always react how I used to. I see the changes in my Dad and it makes me wonder how long before I lose more of myself to this horrible disease.

One thing the funeral did do was allow me to have hours off and on conversations with my Aunt who has been declared cancer free and has HD. She told me she and her husband had early on gone to a support group and never went back because it was scary. She has many of the same symptoms and changes that I see in myself and my Dad. The cancer, treatments and a stroke in 2018 have exasperated her condition. Her speaking was affected by the stroke. Her gait is what she said seems to be affected right now. She is 70. I pray daily that she is helped by the meds and never sees the scarier parts of the disease and that she stays cancer free. She beat stage 4 ovarian cancer all while having HD over the last year or so.

I think I still want to attend a support group meeting. I think having support for my family even if its a little bit of a drive will go a long way in the future to assist. They have monthly meetings about an hour away.

I have been told a friend that she had been sent to a grief counselor many years ago for her fibromyalgia and maybe that’s an option for me too. I mean its crazy how much I miss being ME. I even mentioned this on some of the groups that I joined on Facebook. Maybe the advice will turn into a positive suggestion for those families.

We attended a church service with my brother and I have been looking forward to it each week. It definitely has touched my soul.

So I thought both of my last post and this one had posted last month. I haven’t had a lot of time to blog, but looking forward to taking the time again. Too many feelings and worries going through this brain.

God, Huntington’s and Family

Huntington’s Disease has already taken too much from our family and its very mild compared to others.

I was on my way to the rheumatologist and realized I had no idea how to get there. I’ve been to this Dr. many times in the last few years … Thank goodness for the map app in my phone. I feel like such a stupid person when I can’t make it somewhere. I can’t remember.

I was talking to God on my way to my appointment and right as I asked for him to watch over the extended family today as they travel and as they prepare to say goodbye; the song “Just Be Held” by the Casting Crowns came through by airpod. I don’t think I have ever heard of them or the song before. It was my answer to the prayers I think. I learned yesterday that God is there and I should pray to him daily. So I did and he answered – I think anyways 🙂 Even if it was crazy coincidence, I’m amazed by it.

Living with chronic illness is extremely difficult during sad, happy, warm, cold, hot or any other adjective you can put in there. Any change causes a disruption. With the two doctors appointments today and preparing for the funeral, I’m tense and tied in knots. This causes other issues to arise like high bp, depression, migraines and so many other issues. A flare doesn’t happen to me because I’m always in a flared up state. I’ve not been out of it per say for most of the last year. I know its probably due to the breast cancer treatment and the meds I take. I have side effects and low levels of energy again. The hot flashes that I get are incredibly unbearable and embarrassing. I will soak thru an outfit in no time. Thank goodness my mom and I can wear each others clothes 😉

No news on the social security information that was submitted and no info forwarded from the Advocator Group that is seeing to the process. I think I need to make a call to check in. If it ever gets approved, I then have to wait two years for Medical insurance to kick-in. Having insurance would take a huge amount of stress from my husband. Everything being so expensive….

Rheumatologist said they rarely have patients as high as I am on gabapentin. I still have nerve pain. So we are tapering down in preparation for having no insurance again very soon.

I sit here at the cancer treatment area waiting for my shot and as I walked in that there such a variety of individuals sitting around. Old, young, petite, plus size and especially those that you know are not feeling all that well after/during their treatments; God bless each one.

Death, faith, love & chocolate

Wow what a time it has been since I last posted. It seems like it has been a month.

My son is working towards Eagle Scout and due to bad weather the annual Sunday had to be pushed back a month. The scouts always serve really good pancakes and sausage for the church congregation. It is always a nice service and especially this year as it is the Pastor’s last year having the ceremony. I think this is our 9th year there. I am not an especially religious person in that I do pray and I do believe in a God, but it seems like everything I learned as a child at Sunday school just didn’t stick with every detail. I just never actively go to church. I however in an earlier post mentioned I pray/talk to God and for others and maybe I need to get back in touch with my spiritual hope. I was thinking this mere days before Scout Sunday as I looked at a bible that had come with one of my breast cancer gift packets. We went to church and the entire sermon, those thoughts were echoing around in my head. the Pastor was describing how the Lenten service(s) this week would be and I heard him say today, Ash Wed, is a time to reflect and change the parts of our lives around. With my short term memory loss, I am not sure if I will retain anything but I think I need to try. I am going to use a Bible journal and Lenten Journal to begin. I feel confident that I can commit to reading at least one scripture daily. I’m looking forward to it.

As we were leaving the service, my phone kept beeping and suddenly rang. I was asked to call my brother immediately. My mind immediately went to my Mom and my Dad. It really scared me. My brother told me that my Dad’s oldest brother had passed away. I just wanted to curl in a ball. I mean I already worry about my Dad, who also has Huntington’s Disease and my Mom, who has other health issues. My relief was short-lived as it is still a large loss to our family and all who knew him. My Dad seems like he is aging must faster than before. He is unusually quiet at times, but doesn’t seem depressed. I helped him find some funeral appropriate outfits for the viewing and the funeral. He started out with 8 other siblings and is now down to 4.

I continue to see my Dad’s progressing HD … his hands seem to move around a lot, he is rather thin and his balance and cognitive changes are definitely apparent. I have always wished that he would not see the horrible end that HD brings. He had a late onset of symptoms; from everything we were told we hoped they would never get too severe. I worry my Mom will not be able to care for him. I worry my progression with the disease will prevent me from helping. For now, I have been doing my best to be there for him and for my Mom. My Mom really thought highly of her brother-in-law and he of her. I really can’t believe he is gone. He was one of those people that seemed like they would live forever.

So before we knew it, Monday arrived. My son and I saw a gorgeous lab mix dog running with a broken wire rope. He caught him and got him in the car. He never barked and only did some small amount of whimpering in the house. We took him with us to my son’s appointment, fed him, ran errands and took my Mom home all with this huge dog. It broke my heart that he couldn’t be ours. My husband saw on Facebook that this same dog had been found in the last 6-months by others repeatedly. The owner agreed to meet me and then asked if I wanted to keep him. I didn’t want to let the poor doggy go. Very sad. The weather when we put him in the car was around 8. Today it was extremely frigid and we got a private message saying this guy had turned up again at their house hungry and cold. The last time this happened he had the dog for about a week. I couldn’t keep him, because our dog wouldn’t like a new male and he was too strong for me on a leash. I weigh near 200 # and he could pull me across the parking lot. If the owner hadn’t called, I would’ve had to take him to a local shelter. It is much too cold for animals to be outside. I hope that he stays where he is now, warming up and cared for.

Tuesday felt weird to not have that big cutie with ya haha. Taxes dropped off and I went to take Mom to get chocolate supplies and visit dad. Finally submitting our paperwork to get taxes done.

I had breakfast with my niece and her Mom at the same school that I went to this morning. She is in second grade.

Mom has been working on chocolates when she can stay awake. Her recent thyroid issues are horrible and she is tired a lot. So today, we curled up on the couch. Mom on on end of the couch and Dad on the other with me in the middle. I will hardly ever turn down a warm blanket. Too bad I didn’t get a nap too. We wrapped some yummy filled Easter eggs and she planned to make more. The craft show will quickly be upon us. I hate that I don’t get to help her much. We always have places to go and do.

Tomorrow I continue with further Lupron shots and visiting with the oncologist and also the rheumatologist. I had bloodwork on Saturday and my D3 and iron are too low still. That means I need to put the iron supplement back in my diet. It seems like each time I get bloodwork done that I have at least one medicine change. {insert huge sighhhhh}. Good news at the lady doc today things sounded ok. Mammogram is scheduled and hopefully that will go just as well. He has been my doctor for over 20 years. He was my doctor when I couldn’t get pregnant, when I starting having migraines and difficulties while pregnant and developed HELLP. He ordered the MRI that showed abnormalities almost 15 years ago. This was before a Chronic Illness was diagnosed. He has been part of my care a long time. He used to tell me that someday they would diagnose me with MS because of changes he saw my body to go through. Today, he asked about the Huntington’s Disease diagnosis. It’s crazy how time and changing MRIs led to where I am now. I just wanted to be a great Mom like mine was. Instead, my husband and son have to go through so much. I worry about them along with my other family. They shouldn’t have to be in a constant state of anxiety over my well-being.

This is pretty much a small portion of my chronic week. Between headaches, bone chilling cold; and aches and pains on top of pains, my Mom and I try to stay busy.

New Day, New Outlook

I’ve decided that I will continue to blog not because I have viewers, but because it makes me feel so much lighter.

I had my wellness physical and I’ve gained weight and still have high blood pressure etc. Doc was happy to see my depression decreased some and that I am at a happy place for at least yesterday lol. She always spends quite a bit of time with me. My Mom was there and was quite surprised. My anxiety is increasing but that may be a day to day problem. I’m working on it.

This morning my son was sharing some music he likes. I couldn’t stop thinking of how life has played out. What could or should I have done to make changes? Were changes necessary? Will he remember me when I’m no longer here. If I am not in many pictures will he remember everything we did. I worked a lot when my son was really young. He was with my Mom until school started so he was having fun and enjoying his days. I’d pick him up most days and he was happy to see his mommy. Once school started, I tried to attend as many of the events or activities as I could. Late hours for years at a time made me miss out on life. My husband worked where he was always home to get our son and often they were in bed before I got home. I started having further health issues when I was pregnant and had many flares through the years. 4 years in and I was told it was fibromyalgia. I had to look it up. I’d never heard of it. Now it seems like there are a lot more diagnosis of it. I felt bad that my son wasnt seeing me during the week or if I was sick and often tried to do whatever extra we could on the weekends. Vacations were Disney most of the years. Its our happy place. We figured if we were going to have hectic schedules we should enjoy it. When I started getting sick again, I took a few months off and started a closer to home and most of the time 40-hrs a week job. He would get upset I couldn’t attend field trips. I knew I often couldn’t control how my back, and other painful areas would react and didn’t think I could promise to wrangle a group of kids that I would be responsible for. I tried to make him understand. Hopefully, he doesn’t remember it and remembers all the weekend fun or all the baseball and scout events that were attended. Makes me sad that as I am starting to really forget or lose memories; I want to remember so I can remember with him. I have some scrapbooks done; time to do more. I have already asked my Mom for assistance this summer. I have hope that he will look at the with love and share if/when he has his own kids.

Last year, the cancer word kind of smacked me in the face at how much I missed. I know we needed the pay, but he grew up too fast. I’m at home when he gets on and off the bus now. I see him a lot. Along with the cancer treatment came his rough impulsive behaviors at school; home to pick him up there also. Crazy how things happen. Mike isn’t always home to join us so its him and I a lot of the time. We flipflopped rolls in the past 2-3 years due to Mike losing his long term job. I’m there to take him to therapy appointments twice a week and just be there. I wouldn’t be able to do that if last years health issues hadn’t risen up. Radiation and the infection that I was getting were finally over and I was healing better when I received news that I had HD+. Now my cognitive abilities are jumbled most days, I have annoying shaking and fatigue enough to drive even me batty for sleeping too long. Its not a blessing about the HD, but it has been a life saver some days. Thank goodness for the grandparents on others. I’m scared that I won’t have anyone to take care of me in later stages of HD. I’m scared he is at-risk.

So, back to the music, it was a story about a guy; a young soldier that leaves a to do list for if he never returns. I know I should continue my bucket list and talk about what it is that I want. I don’t really want to do that conversation all the time, but I try to give the hubby a quick note here or there and I tell my Mom so she knows what to do for Dad and eventually me. I do not want to tell to much at once and scare them. I’m the carer and its hard to put myself out and let other people handle that part of life. My son isn’t 15 yet (insert huge sigh here).

My heart breaks, because I don’t know when symptoms started and was all the fibromyalgia really that or HD or something else. If it is HD related, it means that I have had symptoms for almost 15 years not the 5 years. Inquiring minds want to know?!?

I guess that’s the beauty of life – ups and downs.

I’ve been feeling kind of melancholy today so I’m writing all over the place.

Ordinary days

The weather changes hurt my body so badly today. Sat at an event yesterday for 4 hours and paying for it today. Windy, damp and chilly days out there are not helping I’m sure.

I’m not sure what wakes me up every night after I’m asleep approximately 4 hours….. Every night until I’m too tired and crash to catch back up. I don’t know if its a medication or if I’m hearing something. Makes for a long day the next day even with a few more hours of sleep.

I got an email today that my wrist and hand xrays did not show fractures …yeah!! However, it is still hurting and not that strong. Waiting to hear from the doctor or get an email.

We had to miss the birthday party today. I was up all night before sleeping a little longer. I really dislike missing family functions. Hopefully, I can catch up with them this week. I have alot going on.

Not much to chat about today. I mentioned in my previous post about cross-over between illnesses and it truly is difficult to say what is happening because of what. I can’t figure it out now and neither did the doctors for all these years. My back, legs, shoulders, toes, hands, knees and many parts I can’t remember the name of are just hurting more than usual and more often & widespread. That gets me feeling all down and sorry for myself.

I’m wondering if I should continue with my blog…is anyone reading it or gaining anything from reading it? Let me know what you think. TIA

Livin’ life

Saw the HD doctor this morning. What an amazing person she is. In my eyes, she has to go from patient to patient/ room to room to a lifetime of death sentences. Even now when a cure might be around the corner, around the corner is years a way. I’ve not seen her without a smile and encouragement of some sort. She definitely is very knowledgeable and I can’t be happier that I was sent to her.

The Dr. complimented my bracelets today and said I was the second individual she saw this week who started beading. She asked if it was a new fad. I told her about my blog post about HD and beading and she chuckled. From what she said, I’m keeping my hands and brain busy that’s all that matters. I said I try stuff and most is just too much. My chorea gets much worse when I am using my hands, but I can make ten or so bracelets watching/listening to the TV in the evenings. I enjoy picking pieces to put together. I’ve recently gotten a couple strands of beautiful natural stones and of course new breast cancer awareness pieces. Many of the beads are glass and I enjoy pairing them with other glass baubles, spacer beads and of course shiny pretties to finish them off. For now, they are simple circles. Circles I pick the look of. I have always been crafty so this works. People ask why I’m making them. I’m trying to come up with a craft I can sell along side my mom at local craft shows. I help her when I can and her chocolate is amazing!! Usually I don’t help as much as she does; so this is my contribution. I kept telling her I didn’t need another hobby, but I’m glad I started doing it.

So – living with chronic illnesses – I’ve not been feeling my best. I have been asking to lower some of my normal meds to save money as co-pays are ridiculously expensive. Some my rheumatologist has directed me how to take differently, but warned my spasms and pain would escalate. I had to change a muscle relaxer since the insurance wouldn’t cover it.

Paying for insurance alone is expensive. I see these commercials where the cost of certain drugs are so high and most are required for keeping people alive and they are either incredibly high in price or new to the market often without a generic substitute. However, if I was an addict, I can get recovery drugs free. I just shake my head, blow out a deep breath and continue on as my oncology, neurology and normal PCP bill stack grows. It is just all hitting at once. We just got the insurance in January and my husband will be losing his job soon. No insurance again unless I can figure out a way to get it on the Marketplace…..see another deep very deep breath and trudge along. Off my rant about that. I could go on an on.

I’ve considered finding a job. I’ve went from nice paying & amazing benefits for the last 23 years of my life. With those jobs came longer hours and more stress. I knew it played a large part in how my chronic illnesses would flare up, but not really how much until I was off about 9 months. The job I left was pretty stressful, limited hours,

amazing benefits, 10 minutes from home, less pay and high stress. A different kind of stress than day to day living with chronic pain, etc. A lot of people do not understand that it is a 24/7 occurrence. I do not get below a 7 on a pain scale of 1-10 most days. For example, my Mom and I spent an entire Saturday looking from bead show to craft stores and although it was a great time spent; it has taken a week to recover. I slept almost all day the next day. Thank goodness it was a lazy Sunday. It didn’t help that I had fallen down the stairs. I wore the wrong kind of pretty footwear for the day. I have had some headaches with the constant temperature changes and the usual list of aches and pains with the weather, but my headaches have been minimal and only one migraine since my last visit. I was having them daily that drug on for days. I can’t say I miss that. Truth is I’m glad that there are amazing doctors and scientists out there working to find and administer breakthrough treatment or keep plugging along with the old. There are also too many people taking advantage of situations. Everything is getting more and more costly. People suing; doctors needing more insurance, cost of living it all keeps going up while income for mid-level families go down. This makes me incredibly sad 😢.

HD – Huntington’s Disease Updates

I’ve had a few people ask what is it; what are you doing to fix it; why aren’t you back to work…as you can imagine the list could go on and on. 😉 I’m overall noticing a lot of my past “unexplained” issues could have been the HD all along. A lot of that can cross over between diseases/illnesses. It is great that there are online forums and groups to vent, ask advive, etc. Per my Dr., I am considered disabled. I am unable to go back to work. Unable being the word used and not that I didn’t want to find a new job. I forget a lot so training me would be a challenge. Many nights, I barely sleep so I would be a zombie at work instead of at home. What am I doing to fix the problems? Doctors prescribe meds (see rant above) and tell you to be as active as you can. Not to let yourself be secluded and cut off from loved ones. The symptoms get treated: chorea, restless limbs, depression & anxiety, brain and heart healthy vitamins and minerals, etc. In my appointment today, my Dr. was quite surprised to hear with my diagnosis that they would deny me Social Security. I really think that the diagnosis didn’t get put on the application or the documentation passed in the process. It is just frustrating knowing after waiting waiting and some more that I will have to wait another 2-years after approval for Medicare. 😥😰😭 There are congressional acts that could help this, but some of the leaders we have must not think it is as important as others. It was first introduced in 2007 then revised and reintroduced in 2017. I will include a link to an article about the HD Parity Act.

Looking ahead, we are having a family day tomorrow to support a couple of local VFDs and a cousins 1st birthday is Sunday. Next week is full of appointments and the start of more candy making for the craft shows.

Til next time my friends. My chronic warrior duppa needs to find some shut-eye.

Here are the two lovely stretch bracelets that I made last night. The butterflies are my favorite

The HD Parity Act

Cancer is a bad bad word

Having seen so many family and online families and communities grieve for those lost to the horrible disease called cancer, my opinion is that any stage and any kind sucks because it changes the patient forever and those around them almost as much. The cure in some cases isnt available and the fight/treatment can be worse than the cancer. It takes away the freedom to not worry every scan or mammogram, for example. Worry about every strange bump or pain. Those around you hoping that each is fine as well. Your families are never the same again. These individuals that go through rigerous treatment and fight long hard battles – some won & others sadly lost – my heart goes out to the family, friends and the community that find themselves “in love” with this person.

I’m at a year after my treatment and still healing from surgery and changes to my body because of the cure. The cancer was taken out, but they still treated me with radiation and medications for years ahead. Each person that is treated has their own plan, because they are all different reactions. My reaction to the radiation and infections was different than my Mom’s and the dozens of people online or in-person you talk to going through the path of breast cancer treatment. Lucky for my Mom and I we only had early detection. What people do not understand is that early detection or not for some that “c” word is just a bad bad word. I hit the path positive and on the day of surgery was goofy and cracking jokes after an earlier meltdown….. In reality I was scared sh*tless!

As an adult experiencing the cancer is confusing and so so heartbreaking… As a child I cant imagine the fear of the unknown and the changes. I just hope that it is my ignorance that these babies are treated in a way that they aren’t in fear or pain. I just have never ever understood why these babies, these young children must go through months and years of cancer. Why?

I keep my fellow cancer survivors and fighters in my thoughts and prayers all the time. I read updates that thousands of others are reading. I’ve seen some miracles come out of these situations recently. A lot of prayer and a whole lot of strong decisions by these families along the way with just one reason in their mind and heart – save these babies. Let these babies survive to grow into strong adults and live their lives.

I type this with long forgotten salty tears for several young children that are currently battling this horrible disease. I can’t imagine that being my child or my nieces / nephews. I just can’t imagine or understand the pain they are going through and how strong the adults have to be for these children….my heart hurts today. I have never met either family and still it hurts. Does there come a time as they are fighting and doing all that’s possible – because they have to make informed decisions and know they are doing what is absolutely the very best for their children – just shut off? Oh heck no because they have to be strong and take care of their babies. I watch an aunt who lives with my folks suffer to breathe at times or any of the other complications from throat and lung cancer. The Dr found the lung cancer at the 5 year mark from throat cancer. My hurts for and others that continue to have complications and mets and their families. Cancer like many other horrible diseases is a bad bad word for families.

I write this as I know that I have my follow-up with the surgeon today in less than two hours. I KNOW I should have no worries – tell that to my brain and my ❤

Beading and a few truths

Beading and HD — what in the hell was I thinking? I let my Mom talk me into it. 😀

Left hand shakes & right hand shakes and I eventually put them little buggers on a stretchy plastic or on a thin wire that barely fits. I can barely hold some of the beads, but I’ve kept at it and now have a collection of bracelets ready to go to the next craft show. As long as I get up and walk around occasionally the body is okay right now with it.

It may take me 3 times as long to string the beads, but the accomplishment of seeing an end product … So worth the extra effort. Its a sense of accomplishment that I have been missing this last year. Finishing a project and getting a response. I miss being crafty. I miss those days of working. I have been looking at job ads since my husband is losing his and we will be without the insurance we just got back. I have talked to a few recruiters and the tasks they would need me to do; just unreasonable these days. I’m still looking for something I can still do. (I have noticed my short term memory falters along with choices of words.) So until then I covered my dining room table in pretty plastic, wood and glass beads as well as other supplies. I hope others like them outside my mom and I. ( Lol – or they may be what everyone gets for Christmas next year. )

I started this blog as a way to show the world how one lives with chronic illness, breast cancer and Huntington’s Disease. Some days, like today, there is no energy for getting up and moving. I fell down a few stairs yesterday and today I’m feeling the aches and pains. I landed pretty hard on my side. I am typing with one thumb because my left hand is incredibly sore. One thumb is a lot easier than typing on a PC keyboard. I try to type and my hands just shake. I get so frustrated with my body on these days. It is wet and dreery outside and I strongly dislike Winter and the damp cold that seeps in and causes pain everywhere. My hands and body hurts worse then. I know it affects everything & turns it into pain or high blood pressure or even a very bad headache. I seem to be more easily angered and even aggressive in my responses. I expect something from others and get let down when it just is another thought flying around in my noggin. I’m working on not internalizing this all and yet still expressing my opinion.

On a positive note – migraines are mostly under control. I so hope that continues. An occasional headache can be dealt with.

I feel so good one minute and so horrible the next at times that I’m really trying to become more positive and enjoy the good days or even minutes as they come. I’m glad I can still type one handed. I’m so glad I am able to get up out of bed most days. I am incredibly thankful for so much. I know that’s often overshadowed by the reality of my life; my truths. I don’t set out to be a Debbie Downer – life seems to get in the way. I like others just need to find out a better path to take.

So beading or any task can become a challenge to someone with a movement disorder or chronic illnesses. If someone asks for help, know it isn’t because they haven’t tried themselves to do the task. It means alot to me to have someone open a bottle of H2O.

As this disease progresses I will lose more of my abilities both physically and mentally and I hope and pray daily someone will be there to “open the water”.

One year cancer be gone surgery anniversary

Yeah !! Today is my one year cancer be gone surgery anniversary!!

It seems like it was yesterday some days and years on other.   It feels like I have been done with radiation a really long time.

I have a mammogram scheduled for March if I have insurance.  Insurance just returned and now will be gone again. That will be the test of NED. I’m eager to have the first full mammogram since last year.

Fingers crossed I can give good, no great news in March.  Remember people EARLY DETECTION MIGHT JUST SAVE YOUR LIFE 😘

 

Changes & Hope

The changes to my body due to weather, activity, sensory issues and so many more things has taken ME away from Heather.   I’m not the same person since before my constant fibromyalgia and migraines.

I woke up this morning and its toasty in the house and a frigid 0° outside.  No snow today.  My body is in spasms and so much pain.  Yesterday, I put on makeup (took me an hour lol) to get a nice picture with my bestie and her husband and had lunch with my folks.  Mom made lasagna and I couldn’t pass that up 😍😀

My youngest niece wasn’t feeling well and I was sitting on the floor rocking her on my lap and today every muscle that was involved with that rocking feels like I ran the Pittsburgh marathon.  I woke up in the middle of the night and was sore in my neck and couldn’t figure out what the hell I did to hurt it.  It is 72° in here and my body feels like its outside under the sun.   🔥🔥hot flashes are rough today 🔥🔥 The pain & spasms happen all of the time from the simplest of tasks.  Sitting up-right in a regular chair makes my hips and knees burn.

All of these symptoms shouldn’t define me , but I do occasionally forget what a survivor I can be.  I have lived and worked through this disease for over 15 years.  I have worked with wicked wicked migraines.  I stayed strong through surgery, treatments and so many complications to be where I am today.  I am a breast cancer survivor! I will be a warrior as I fight through the Huntington’s Disease obstacles ahead.

I just get sad I am missing out on life activities and that my little family at home is affected by the journey ahead.  I say journey because it will be a fight to get there.  I just hope we are able to make it to the end together.   Some days, not gonna lie, it seems impossible and others definitely doable.

Reading a post from a fellow blogger this morning, I realized I am my worst enemy.  I often am much harder on myself than others.  I praise/console a friend and call myself a dumb ass for doing similar things.  I’ve been guilty of this nearly my whole life.  As a mom with chronic issues I am a worrier and often blame myself for activities we don’t attend, missing out on tasks outside like sledding or ice skating, because I don’t know how it will affect my body or I’m already too worn out to do anything but sleep.  I miss reading a lot, working and providing for my family along with my husband & taking pictures or being in pictures.  I used to take 1000s of pictures and love playing and editing them.  I can’t even hold my phone up for a proper selfie. I want to take many more of my family and have them take pictures with me.  I’m afraid that they will forget who I was and things we did together along the adventure called life.  Will I be forgotten? I hope not.  I hope that they will remember the heart they always thought was frozen; melted and thawed and yet unnoticed.  I have a heart bursting with ❤. I don’t always let it be shown.  I am brutally honest with my truths.

I saved this and decided to finish after my day – -what a day.  Driving around in circles for appointments, oil change in record time, feeding pops and heading home.  Once again hit with an abrupt slap of reality; let’s keep that for another time😞.  Anyways – I’m trying to keep positive and ignore the severe pain. Hopefully the pain cream helps. TTFN

 

 

A birthday, snow squalls, cold weather & bestie visits – my week

January is almost over!  Snow and winter are here.  It’s weird now that it’s cold the pain/discomfort is achy yet sharp.  My foggy mind is cold.

Times are a changing and going by so fast.  This week I turned 43.  I also called the rheumatologist to see about changing my medicines; which now under the insurance cost an arm & a leg.  I guess having insurances that were very good the last few years spoiled me and makes me now cringe when my damn phone dings with a text letting me know they are ready.  I know my pain will increase, but I think I need to do something. I had to start sorting my meds into AM, PM and mid-day.  Trying to find a better way to make sure I’m taking meds even when I’m feeling so crappy.  I sometimes forget or fall asleep beforehand.  So far my methods seem to be working. My short term memory is horrible.  I set reminders and alarms for meds and other tasks.  I have had to increase those.  It is so weird that I can remember from when I was small but not now. Is that the Huntington’s Disease or Fibromyalgia  or maybe it is me just getting older?  I have wondered a lot about that over the past few months since diagnosis.  I went thru periods of severe vertigo, falling with no known cause, unable to walk due to muscle tightness/spasms, bladder issues, swallowing issues, essential tremors, migraines for weeks at a time and foot pain prior to this – probably over the last 15 years. Does that mean I have been showing signs all that time? Or maybe they were showing thru the last 5 or 6 years when the MRI showed a difference?   I know many of the HD community have multiple conditions often overlapping.  Does this overlapping make caring for oneself or  loved ones even that much more complicated?

On my birthday, the HD community was given hope.  There may be a possible cure for this nasty disease.   My teenager told me it was my birthday present.  What a “gift” that would be for so many families.

Today, I saw the bestie that lives too far away.  It has been several years now since we have gotten together.  We both really need to try harder.  Although we talk usually daily about getting together, kids, her work, etc – we share pictures a lot.  It’s nice to see her grands and I enjoy seeing pics from everyday life.  I have very few people that I truly can call tight friends.   She is my bestie.  I love her and her family just like they are my blood relatives.  The snow tried to keep us apart, but in the end it only slowed us down a bit.  It was nice having a girly day with her and another good friend.  They are cousins and I have been friends with these ladies most of my life.  I cherish each for the parts they have played in my life.  Getting those tight squeezes today really brightened my month.  I’m a hugger.  I am pretty sure my eyes were leaking.

I spent some time this week with some other important people in my life.  I get the greatest feeling from kissing my Dads head or grabbing an extra hug.  He hesitates and repeats like many HD patients do.  He gets stuck on topics or conversations.  He doesn’t like change.  He has a huge heart and likes to be helpful. I hope for him that the HD continues progressing slowly.  The other person is my extra special lady.  She is there no matter where, when or what her family needs. It doesn’t matter if she is sick or tired…she is there.  My friend might be my bestie, but my Mom is my best friend too. She’s the one I talk to, vent in person to, listen to and get the same in return.  I mean I’m such a lucky gal to have these two in my life.   I thank God daily for giving them and my brother to me.

I am not sure that a lot of my medical issues are understood by my family.  I am the person who usually tells them about topics like this.  If I see a good caregiver tip, I give my mom a heads up.  The forums and Facebook groups are a great addition to medical care.  I think they offer so much up to discuss.  Usually if you post, there is someone out there caring for an individual with the disease, have the disease or an at-risk person that can lend there knowledge to many others.  Who will do this questioning if I’m not able? Who will ensure my mom understands why my dad does what he does? On my birthday, I opened up a rather large bill from my cancer treatment and hit me just how costly the journey ahead will be; not just monetarily.  It will take a toll on life as we move forward.   I try not to think about the bad aspects and challenges and think about the possibility of a cure.  That hope & my mom keep me going most days.

 

 

 

 

 

 

 

 

 

Knowledge & Learning

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!!!

 

Blogging & Me

I’ve been working with some groups & pages on things to do and things not to do with a blog. I figure sometime later when I can afford to get my own domain I can go that route.

It has been pretty calm in Heathers world. Today is my amazing Mom’s birthday — 65 years young.  She is amazing.  I would be lost without her.  She is the sweetest woman.

Cold weather and possibilities of mass amounts of snow are settling in.  I’m settled into the house until it is done lol

Snow Cold and I are not even friends with me.  I should be used to this PA winter weather.

 

 

Welcoming in 2019

Wow what a year 2019 has started out as …

I mean I knew it was going to be wrought with bad memories and 1st year worries, but as life always does it turned out to be that and more.

Struggles with and for my son has really taken over.  Poor kid tries so hard to make friends and impress people and says and does a lot of impulsive things because that is what happens to teenagers with ADHD & ODD.  There is hope in the name of Bob and hopefully Bob is able to help bring out that sweetheart of a kid who we all know is in there. Positive thoughts and prayers always welcome for my boy.

I hate wintertime, but love to look at the beautiful snow outside.  So the time between November and March most likely because it includes holidays like Thanksgiving & Christmas but also my Mom’s birthday, my birthday & my FILs birthday, my husband’s birthday, my bestie’s birthday, cousins’ birthdays, St Patrick’s Day, and of course my Parents have their marriage anniversary.

Last year, so many other thoughts and events pushed those happy memories completely to the back of my mind.  Early January 2018 and an early mammogram was key in that.  I knew when they called after my mammo for a repeat that it was cancer.  Not even sure why, but I did.  Diagnosis was given on my Mom’s birthday.  OK I got that and was positive and knew whatever the outcome of the further testing and treatments that I had it.  Then days later, I go to the hospital for the next screening – a breast MRI – and it was uncomfortable and not fun.  Okay got thru all of that to get a call at work that they saw a spot on the right side.  I was barely making it thru each day and that completely devastated my world.  Talk about curling into oneself.  I slept under a desk and eventually went to visit my in-laws so I wasn’t home alone.  Thank you work girls for understanding that day that I did not need to be alone.  The mammo guided biopsy was painful and long.  But I made it through it.  Good news came that it wasn’t cancer.  Even though I got through the biopsies and the seed placement and a rescheduled scheduled date for the lumpectomy surgery.  I literally had something for every few days leading up to surgery.  As I have said in earlier posts, the day roared in with a nasty nasty snowstorm.  School cancelled but I still made it there with the hubby’s exceptional driving.  My Mom doesn’t drive so she gladly tagged along.  She is really amazing and was there to get me thru the days following at home.  It still makes me wonder why so many surgeries are outpatient.

A nasty cold after surgery, made me forget my bestie and my husband’s birthdays, but I think they understood 😘  most importantly I was able to have dinner with the guys later – food makes it all better! Then it was time to heal and heal and heal back up for radiation to start.  That was another adventure in another quarter of 2018.  Of course, nothing ever and I mean ever stays normal or has the same normalcy with my body with the pain and reactions to meds. **  see breast cancer always seems to take over and I was Stage 1 with no node involvement.  I just can’t imagine that all of these beautiful woman who are fighting and having more agressive journeys are doing it.  It just digs into every crevice of your life.  Many positive thoughts & prayers for everyone fighting and those that are kicking cancer’s ass.

A Huntington’s Disease diagnosis in November 2018 wasn’t how I wanted to start that happy time, but it was better than being an unknown.

So back to happy memories in that time period, my parents had been married for 44 years.  Happy Anniversary #45 for 2019 in March!!

So in a nutshell the time of 2018 that had always been my favorite flew by in a blink.

So for 2019, I didn’t want that to happen.  I want to celebrate the good days and try to be positive on the rough ones.  I want to handle each hurdle as it is thrown at me.  I’m really trying.  I will celebrate the day of my mom’s birthday as her 65th and not as a day of diagnosis.  I will celebrate the day of my FILs birthday as my 43rd birthday and not as the day I had additional tests done.  I will be starting the 43rd year in just a few short weeks.

Starting a new year and another beginning. A lot of people do not get that opportunity, so I am blessed to wake up on another birthday.  Age is not a number or something to be disgruntled about.

Missing Man

The past few days, the community and local firehalls, neighbors and others have been searching for a missing 70 year old man that was visiting a local family.  He just disappeared and after the 2 days of organized searches they have called them off.

I am keeping this man, his family and their friends in my thoughts each day.  How sad.  He has medical conditions and with the winter weather

Stressed and a Short Fuse

I am so stressed with everything going on with my teenage son, Holidays and life. Add short fuses all around.  Big sigh.

We did the fun PJ pictures and captured some cute pictures.  I am not photogenic, but worry that if HD or anything would come along and run me over that I would be forgotten.

Our Christmas days went well just like I described in an earlier post.  We decided to enjoy the hospitality of my brother’s house.  Great company, good food and excited kids.  My 2-1/2 year old niece was having a blast opening her gifts and helped with mine too.  Her older sister got in on the action after a bit.  They are too cute to tell no lol. Christmas Day my husband created a smorgasbord of breakfast foods and his step-mom brought cinnamon bread that she turned into French toast.  First time I ever have liked/loved French toast.  Yummy!  We chilled til suppertime and had supper at my parents.  Yummy as usual and I ate far too much! Cookies, fudge, cheesecake, potatoes, and of course ham.  It was home and an early bedtime for us.  Long day.

Its been a busy week and I’m ready for the weekend.

Hope everyone enjoyed Christmas.

 

 

Tea Break / Merry Eve of Christmas Eve

If we were taking time to enjoy our favorite cup of tea or in most cases of coffee…I dislike coffee but ❤ a hot cup of tea or hot cocoa…we would most likely be discussing the past week, our kids and the upcoming holiday.

Some highlights of the week included my teenager getting expelled from school for 3 days maybe longer. It is like every time his grades get better his social cue recognition gets worse.  I also personally think certain classmates know he’s going to get in trouble for doing something that they push his buttons.  I also think his threat of self harm is to get attention and the fact he sees no social cues is really rough on him.

I also think we would talk about your life and how busy it has been for you at home and work.  I know for me the time before a big holiday is a flurry of preparation & cleaning.  For me, cleaning is a real nasty chore.  I get so sore and can not finish on time and I get frustrated. I know you with a big family have a lot of events too with concerts, shopping and work in there too.

I think the conversation would usually start or end with “how are you doing?” and the conversation goes from there.  My “oh its OK with a shrug of my shoulders” or “it could be worse”.  Because we are taking a break together I might update you on anything new with my health or start the story.  Most people have a rough time discussing it; I do not.  I would rather bring awareness to the tea break.  I get it that people are going to ask and I would ask a friend too.  I just wish our conversation was more about you.  How are you? How is your family? Since it is almost Christmas, what are your plans?

My Christmas plans rarely change from year-to-year.  The past few seem to be highlighted with a lot of depression and anxiety.  This year I’ve been with my Mom a lot which helps.

On the eve of Christmas Eve this year we had a visit from a family member we have not socialised or celebrated the holiday with in just a really long time.  It went much better than expected.  It was a good start. Family can be blood or not, but its hard to take that step or steps to break the ice and forge ahead.  Good times.

Christmas Eve has always been a special day for my family.  Yes I know the reason for the season.  My family just doesn’t have to be confined to a church setting to celebrate his birth.  Over the years my family of 3 and I have attended Christmas Eve services and they are beautiful in so many ways.  We spend the day working or getting everything finished up to go to my folks.  When my son was born the later evening of family time changed to supper, gifts and a book. Now that there are additional kiddos we never know how many will be there, but they all usually are there for part of the night.  In the past, my Aunts and Uncles would join with their families.  We all just have our own families and schedules.  It is sad to see that go.

Supper, cookies and more cookies is followed by gift exchanges and twas the night before Christmas reading.  We have read it each year since my son could read, then the nephew(s) and I am sure my nieces too.  It is just a good end of our busy day.

I know we discuss plans for Christmas Day and the brunch menu this year, but then we would realize once again the drinks went cold and we have talked much longer than the small break intended.

Hugs, kisses & Promises of future visits are made.

We all intend to stay in touch and something gets in our way: growing our own household, work or distance are only some of the reasons but I do try to send a text, instant message or message online occasionally and on holidays.  Tea breaks with a friend are rare cherished enjoyment.

MERRY CHRISTMAS EVE TO YOU!

 

Christmas Eve Eve!!!! HoHoHo

Its almost Christmas Eve and super excited to spend time with family.  Spent days cleaning and cleaning some more always causes major aches and pains and darn if I’m not feeling it.  It is just so very hard to have a fairly clean house and a beautiful tree too look at.

We took pics in front  of the tree and trying to get a teenager, 2 adults and a chihuahua named Zeus to look; we got some cute ones in my opinion.  I really haven’t been taking pics with my good camera and today we were using it.   I Just was happy to have time to do it.

 

 

Writing more or less

Well getting up really early because I can’t sleep came in handy today.  I was able to clean, wash rugs, and so many other things.  It feels like I am forgetting something major, but cant remember.  The spasms were bad again today, so I got up moving and felt so much better after.  The presents are all wrapped and brunch food bought.  So more time right now means preparing for our Christmas celebrations.  Family time and limited electronics is always a great time. My Aunt asked if I had everything wrapped and I said as far as I know, because I looked in all the hiding spots lol I can’t remember where they are if there are more lol.

I had time to write more, I would write a romance book.  I have started a couple of times, but just can’t finish it.  I have always wanted to read, read and read more.  Since the Huntington’s diagnosis, I think about things I don’t do and used to. I think it would be so fun to write the story of us.  I would love to write all about our lives so that my son would know how much I love him.  Scrapbooking has always been a passion of mine and writing a story to go along with it would be something special.

Not being able to read as much due to migraines, I feel lost.  I also enjoy writing and my tremors suck. I can’t doodle or write like I used to.  Who know that one task would make me feel less about myself.

Christmas or any holiday really does put a lot of stress for people with chronic illnesses.  I tried this time to not get bent out of shape about anything.  Omg and those that know me would know I’m high strung these days lol but I am doing okay.  The weather right now is crazy to my health.   The wet and chilly weather goes right thru me.  Its the weirdest feeling that I get pain from sitting.  My hips ache.  I know this is probably due to the medicines for the breast cancer. Side effects to meds really are an issue.  Because of the tremors, I can’t write or draw a lot, but maybe once I go see the Neurologist again the meds for it will make them be gone for awhile and allow me to write again.

Dear Heather’s Body :

Dear Heather’s Body :

You have not been kind to her.

  • adhesions needing removed
  • infertility & female issues
  • hellp syndrome
  • bladder issues
  • vertigo
  • migraines often lasting over 72 hours
  • fibromyalgia
  • depression & anxiety
  • horrible immune system
  • falling (yes broken bones too)
  • bad teeth
  • sleep apnea
  • breast cancer
  • HD
  • high BP, gerd, etc etc

Just a few of the issues you have continued to throw at her and take over her body. You need to stop bullying while she is down.  Medicines and treatments help then cause secondary issues because of her sensitivities from fibromyalgia and allergies.  Those require more treatments and more meds.  Give her a break already.  I thought maybe since her breast cancer wasn’t going to require chemo and a mastectomy that she was finally in the all clear.  Nope, I thought wrong.

The bullying and damage needs to stop.

It needs to quit preventing her from getting better.

Respectfully,

Heather

 

** Could you imagine if we could write letters to oneself that would make a difference? I guess that is what all of the journaling, bullet journaling and even blogging are doing.   Yesterday I received a new pen and paper journal from my best friend along with a really great pen (so excited using the mermaid tale pen LOL) and other special items.  I cried yesterday because I could feel her love. I miss her something awful.  She is writing her own letters, but I’m glad to be apart of them.  Please continue to write and enjoy life because we all never know when something horrible could happen to a loved one or ourselves.  We always joke about having cross training at our jobs and the old proverbial bus runneth over, but we don’t always seem to see that in our personal lives.  Very sad to hear this morning that a local family went thru the most horrific few days and will bury a young child.  So many prayers for the family and for that baby who will call heaven home.

My cousin’s husband was taken into a rush rush 6hr spinal surgery this week. He was in a pretty bad auto accident due to a medical condition, he did not even know he had, several months ago and home healing.  It seems the vertebra that had burst during the accident were pressing on his spine and could have punctured it.  Word from family is he is on  some good meds and coming thru it.

Many prayers, positive thoughts and to you all. Yeah, I still have those in me and don’t want anyone to think I am asking for pity.  I just want to make some awareness for fibromyalgia and HD. Thanks.

a year’s path ahead

A year ago today, my body was in terrible terrible pain and my head was pounding as I was admitted into the hospital. I already had a foot boot for a heel fracture. No energy was to be had. 72 hours later and a med change and I was going home on the eve of Christmas Eve. I had a lot to still do and was just very tired.

It seemed impossible on that day that I would ever feel like myself; that the pain would stop and that I could get back to life as “normal” as can be.

Fast forward a few weeks and I found out I had to get a biopsy on my left breast. On my Mom’s birthday half way through January while at work, I took the call abut the breast cancer.  I remember we were celebrating my coworkers birthday in the kitchen and I missed my PCP’s call.  I remember walking outside with a coworker to stand against this rough pillar in front of the  building.  She listened in with me as I was told.  At that point, losing hope that the Mammo and ultrasound were wrong.  I was getting tests to be ready for surgery it was thought that I might have a tumor on the right side. I received this call at work and pretty much curled up under a desk to cry and sleep.  The ladies didnt want me to go home alone. That was the last day I worked there. Since it had been seen on an MRI, I had to have an MRI guided biopsy. It hurt worse than any pain before or right up there. I will never ever have one again. The first biopsy was ultrasound guided and a breeze compared to the MRI one. Laying on your stomach for the test most definitely did not make it any easier. It was a rather long procedure too. It came back that it was not cancer. Wahoo! I was scheduled for the seed insertion and had the lumpectomy and sentinel node removal done on a snowy day a few days later.  Thankfully Mike was able to be off and drove my Mom and I over. We had to be there early and the weather was horrible. It was done by mid-morning. Everyone at work had been fighting  viruses and mine came with coughing that day. I couldn’t shake the rest of the symptoms the next day and ran a high fever. This lasted for awhile and I think the coughing was much worse than the pain. Later when I could look at the incision in my breast, I couldn’t believe the size and texture of the incision under my arm. I only had one incision that was used to remove the lump and the node.

The next few months passed by so slowly. I started healing, got cellulitis and had months of C. Diff that made me super sick. I had high fevers and don’t remember much from those days in the hospital. I do remember my Mom being there by my side the first couple of days. I do remember going thru the days I was in the hospital with IVs blowing and eventually getting a pic line. Over the following month, I was in the ER I think 4 times. My PC had me go to an infectious disease appointment at Butler. I had been on many antibiotics at that point so the Dr ordered a new medicine that eventually knocked that nasty nasty bacteria from my system. I was also told to  be careful with antibiotics going forward.  I am someone that always catches everything that goes around as it was before cancer.  I was taking radiation and continued to see changes in that left breast and arm pit. My scar had continued to heal and was probably a third or maybe even less the size it started with. Still painful. Still beet red. Still burnt and split open from treatment. I finished treatment and was told I should heal okay. It still looks and feels swollen and hard compared to its partner on the right with some nerve damage below. I would have to take a med for the next 5 years to try and avoid reoccurrence along with a shot of Lupron every 3 months. So I am left with taking yet more meds and more meds.  I have lymphodema on the left side; mild so far but it is there.

I had to have two different genetic tests to determine stage and treatment plans. The first indicated it was not a genetic cancer and the second was my oncotype which is used to show patient and Drs the reoccurrence %. Mine was indicative of IDC, STAGE 1, and something like 11%. For this reason, I deal with horrific hot flashes and pain in my legs and feet.  I didn’t have chemo, but still have had side effects.

I noticed slightly before the cancer diagnosis and more after my memory and ability to catch on had changed.  I was also getting migraines everyday.  I was terribly stressed and muscles spasming a lot.   I was sleeping daily many hours.  I followed up with my doctors.  The neurologist I normally see sent me to Pittsburgh thinking I had MS again.  I say again because this is at least the third battery of tests.  I refused to do the spinal tap this time as I get so sick after.  The MRI hadn’t changed from the abnormal results from 2013.  The MS specialist, also a neurologist said he didn’t feel I had MS, however needed to see a migraine doctor and a movement disorder neurologist. I saw the migraine Dr and she prescribed some preventative meds to work on getting rid of them.   The movement disorder Dr was amazing and immediately saw something no one else seemed to notice.  My tremors, movement and gate were not so good that day. I gave a blood sample for the Mayo Clinic that day.  Months later receiving the news that I had Huntington’s Disease.  Not a shock because I knew the possibility was there.  She kindly explained and made sure I understood.  I don’t think I even cried at that point.  My FIL had driven so I met him in the waiting room and went home.

Fast forward a month & here I am.

FML or something else

I woke up fairly early considering not feeling well yesterday. I felt a bit hung overish and overly warm, however I needed to go look for something for my son. He never tells me til the day before. Spent a few hours with mom and my aunt so it turned out fine.

I ran into a former coworker at wal-mart and it was nice to see him and say hi. He said something that stuck with me….I told him he hadn’t changed much in the 10 plus years. He said well how are you feeling and how are you doing. You look like you are doing good. I just said thanks to that. I mean no one wants to hear how painful my body parts are or how much energy it took to grocery shop. I had to ask a random guy in the parking lot to help me put a case of water in my trunk. I thought about this the whole way home; invisibility.
Many chronic illnesses just are that invisible and many people with them just smile and say fine or some such thing. It is rare that a friend or family member will understand unless they too are dealing with the same illness and symptoms. I was lucky to have a coworker for the last few years that has had fibromyalgia even longer than I have. It seemed like we would know from each others voice or body movements if it was a flare day or just any day. Fibro fog is real and it really can mess with life. It made it hard to concentrate on phone calls and orders being called in. I was writing numbers backward. The anxiety of this happening was really rough on my health and confidence. It is very hard for me to say I couldn’t remember without notes and emails what to do day to day. If I didn’t do something daily I was forgetting exactly what I was to do. Over the last year or so that has gotten worse and the pain settled in my body no matter what I was doing. I was so tired that I had to take a nap every day at lunch. Some days it helped and others it didn’t. This was all before having breast cancer.

Sitting, standing and even laying when I have a flare hinders me by causing more pain. Many times having migraines along with this was detrimental to any kind of life. I’m am told to exercise it will get better, but nothing has helped in over 14 years.

I was given more meds than a gal needs. I had been mis-doagnosed a few times and even not diagnosed in others. I would fall or they would find me on a porch or even a floor. No being able to walk and having a toddler or not being able to go to the bathroom are just examples of some things I dealt with. All happened to me plus some. I even wasn’t allowed to drive for 6 months or so due to vertigo and passing out.

Companies don’t really want an unreliable employee. My illness since 2004 has made working difficult. Eventually working extra hours or working hard on a project would catch up on me. It usually settled in my back with spasms so very bad that I could not stand up entirely. I had several really great jobs, but in 2015 had to resign from one of them where I did union payroll and tasks dealing with accounting and I was having a hard time concentrating because of the severe pain in my legs. Medicines often created a zombie Heather or made me unable to drive myself. The Dr had given me 2 prescriptions that were not compatible with my body. A steroid and an antiinflammatory affected each other. Another Dr ordered an antidepressant medicine and in 3 days I knew I wasn’t able to use it. Cymbalta and I were not agreeable. Yet another example of issues associated with fibro; sensitivies to meds. Other meds caused rashes, hives, low BP, vomitting, nausea, and severe itching. I have a list of meds I can’t take for one reason or another.

I write this today as many still do not understand fibro or how it can affect someone’s life – families, jobs, finances and much more are affected.

Do you think I should write some more about the past and how the timeline has affected me personally or just moving forward? There is a CONTACT ME form on the main menu. Please let me know what you think. I write to clear my mind so I guess I could write and write and write.

I usually try to write first thing in the morning or at night when I’m awake and shouldn’t be. I type away on my tablet or phone most nights until long into the morning. I do get sidetracked or get muscle cramps in my arms and hands typing this way occassionally. I have enjoyed sending blog posts and reading other people’s blogs. I hope I’m not inundating everyone with my posts.

Flare but Productive Day

In times of great stress or adversity, it’s always best to keep busy, to plow your anger and your energy into something positive.

– Lee Iacocca

So yesterday I was in contact with an advocator group about social security and man does that get the ole BP a pumping.  I mean I was partially rejected because of my age and ability to learn.  I am also young enough to get torqued off when I’m I am told it will be 18-24 months on average to get a hearing.   I asked what happens if the person who is applying dies.  Shake my head and sigh and breathe….it’s just so incredibly frustrating to know I can’t learn new things.  My brain & body just don’t get along.  It just continues to show that the whole process is messed up. I have never in my life had to use government help and this is truly not a good experience and I just keep thinking about all of these people that do not get it and they need it.

My tremors seem to get worse with the more I try to write and the more I try to hold onto something.  I can feel my body has a “hum” to it every morning at wake up.  It’s the weirdest feeling.  Today I woke up with severe pain down my neck, back and arm.  I was doing laundry the day before and turned my head to pick up a pair of socks.  It is just that easy to go into a flare.   I kept busy all day to try and keep it loose as I shouldn’t take Tylenol and I don’t take pain meds.  Stress cleaning with bouts of rest got me through the morning. Migraine followed and I ended up on the couch.  But they supposedly are not serious enough to affect my ability to do a job. Tell that to my family.

As per Lee Iacocca, using my stress, anger and add in some pain in there to be productive. Positive outcome was a clean curio cabinet and a few loads of laundry.   Crazy to think to me that was a huge achievement as I could have easily stayed in bed today.  In days gone by, working and bringing home a paycheck would have forced me to work — making the situation more intense and having even more pain.  People see me since I’ve been out of work for almost a year and tell me how good I look and that I don’t look sick.  I chuckle to self.  If only they knew or saw a bad day.  Being off work has played a part in lowering the stress level and keeping from being humiliated by the fact I can barely write some days and often forget things.  I can not seen to hold a conversation without forgetting where we were when I was in said conversation.  It is like my brain forgets people’s names and words.  Why? Why now? I am only 42 years old.    I know I sound like an complaining toddler, but the feelings are still there.  Being off work has altered home my  life and stress is there just a different kind. I have dealt with being sick almost since my son was born; migraines daily, fibromyalgia, tremors, breast cancer, painful body part after body part and falling over nothing.  Severe back pain was common and still happens because my body will not relax enough to get rid of the spasms in my muscles.  A tests years ago showed that I wasn’t having spasms at all in my legs.  I asked the Dr. Why I could feel them …she told me (rheumatologist) that fibro is different than that and they may not catch them on tests they do for muscle activity.  So then I got a shot or two in my back.  That’s just another example that people just don’t get the invisible chronic illnesses.

I know this sounds all random and choppy but I am still fighting the migraine and there is so much more I could say. I am trying to stay positive and hopeful for a better Wednesday

One Picture Tells a Story

Photo Editor20181217_042610

First glance at this picture leaves me with feelings of serenity.  It appears to be telling the audience that the person is enjoying the forest.  The person is looking forward to the path ahead alone. Then my brain second guesses itself and wonders about how alone or distant this person may be feeling.

Without a clear picture of the person’s face, I am going to go with feelings of being on my own in one life’s biggest situations.  I can see a path ahead and maybe even a little light at the end of the tunnel.  I would forge ahead carefully.  I would try to enjoy the path and the quiet while yet feeling alone as I set out towards the end of the path.  That aloneness may be a feeling of unwanted solitude or doubt, but other days it would be the best feeling of knowing you can do it, you can stand alone in life/forest.

 

HOPE

I have abused the word in the last decade.  Hope that cancer isn’t going to take another special loved one; hope as a well wish for a healthy baby or that someone could figure out how to help us understand our teenager. This word for me truly means that I am optimistically thinking about you, others and myself in my thoughts & prayers.

In the last year, it has been HOPE that everything was caught early, hope that the infection would finally be eradicated, hope that Fibromyalgia wouldn’t flare up, and so many other early morning echos in my brain.  I am full of hope until doubt rushes in.  Anxiety and no sleep or too much sleep are soon to result from those worries.  For me, it is hard to maintain the faith when hoping that my teenager wouldn’t be affected negatively.   I have had to have hope that the doctor’s care that my loved ones and I are getting is full of knowledge and skill.  I have a lot of faith and confidence in most of them. A lot of prayers continue to be sent and I’m forever thankful.

I usually offer hope & prayers to those in tough situations.  In breaks my heart to read about anyone dealing with an unknown negative like Cancer and fills my heart with joy when a positive response or outcome is expected.  It has been a life changing year as I discussed in previous posts.  I can only have HOPE that 2019 will be a better year for so many.

“Hope” is commonly used to mean a wish : its strength is the strength of the person’s desire. But in the Bible hope is the confident expectation of what God has promised and its strength is in His faithfulness. – Wiley Online Library

I should probably have more Biblical hope! My crazy emotions may take less control and allow faith in everyday life.  I’m a work in progress. 😉