Winter Storms & Chronic Illness

Living in Western PA has snow, cold, and wet weather. With the colder weather, comes pain. I’ve talked with other chronic warriors & Huntington’s Disease sufferers and they agree it is a rough time of year for them as well. When I can, I am on the chair staying warm. The warmer I stay the better. I sit here posting wrapped up in a big blanket and a cup of tea as the world outside plays in the snow. Sledding, tubing and even shoveling are all things I can not do. So many other things I’ve always wanted to do and can not do

I started this blog to discuss my life and living with chronic illnesses. To share some of my truths. Even before my Son & my Dad passed away, my anxiety and depression was at an all time high. Watching my Dad slowly deteriorate had a hand in part of that. Even knowing he was going to pass away; there is NO preparing oneself for it to happen. Especially within a month of my Son’s passing away.

B and my Dad passed away and it was like I was numb and my body was at an all time high and “humming” it’s own tune. I can’t sit still; I pace. I can’t stay on task, I switch from item to item. But my pain & aching body had to take a backseat to everything else that I needed to do.

I sleep about 12 hours, but in that 12 hours, I’m up & down and up & down again. The nightmare I woke up to on the day after Bs accident repeating every night. I wake up and lay there hoping someday the endless streaming of the nightly nightmare will stop.

Greif can hurt the body physically and it is doing a number on my chronic illnesses and me.

Greiving at Christmas

Grieving has its unique path for every person that experiences it. Add an additional loss and it veers off another direction. For me, it has devastated my heart & left me searching for something other than greiving. The holes in my heart will never heal. I have experienced numbness, anger and depression to name a few feelings after the loss of my son and Dad. I’m told that all are normal and necessary. I just need to feel.

The greif counselor I work with was surprised to see me finding joy in my Mom’s Christmas tree and Christmas music when she arrived. She asked me to journal a little on items that I was finding joy in over the past few months or past month in particular.

My husband and I chose not to put up a tree this year. We just couldn’t do it. In our hearts, I don’t think we could handle it. All of our ornaments are remembrances of trips or particular special moments with each other and our Son. Helping my Mom put up her tree for the other grandkids to enjoy held no such memories. I did put on one “Chuck” ornament that actually brought a smile to my heart. I spend a good bit of time over there in the mornings and enjoy watching the tree lights twinkle. Dad was in a hospital bed after his November 2020 fall and enjoyed watching the tree last year.

As we were decorating, cooking, shopping or doing other things; I would turn on Christmas music. At first, it hurt because I would never listen to my Son and I enjoy the sounds of Christmas together again. Then I knew he would want me to enjoy it and I listened to it every chance I got. I found pure joy in it.

In addition, to the sounds of Christmas, I found a little bit of joy and some jealousy in hearing other family members laughter and joy during the holidays. Listening to my neices and nephews open gifts and enjoy the family traditions across the holidays were bittersweet joy.

I know listening to the holiday next year will be a totally different experience. The grief will not be any less, but the experiences around it will grow around it. I am taking this greiving process one day, one step and one emotion at a time when I can.

Grief Counseling & Journaling – part 5

What are my best or favorite memories of our 17 years with Brandon…

I have so so many memories of Brandon that it has been really hard to answer this last question. We did so much when he was little that I can list a few but knowing what I know now they’d all be my favorites!!!

When our little miracle spent his days in the NICU, we would take pictures every Friday to show his progress. I continued this tradition once we were home, but a faulty camera disk took most of those away. I was able to recover a few. These pictures show some of my favorite memories of the little guy he grew into for the first year.

As B grew into a toddler and a young man Birthdays were some of my favorite activities. He was a well loved only child and first grandchild on both sides. His birthdays were big deals. We had themes he wanted and our entire extended family would come. Then he chose themes where friends could go to. All of these were a blast and I’m so glad we did these over-the-top events for him.

Vacations to Disney World would be a huge memory. We usually went every other year or so. We all 3 loved the Florida area. Several times Grami (my Mom) went with us and another time two sets of grands went. Brandon was 3.5 years old on his first trip. He was potty trained and learned to tie his shoes on the two earliest trips. His dad bribed him with Legos. Lol my husband had to spend alot of money in the Lego store those few years. Love that memory.

These are just a few of the major and my favorite memories of my son. B had a large eclectic personality. He was a huge love bug and could melt my heart with an “I love you, mom”. That’s my ultimate favorite memory.

I could go on and on.

Thanksgiving & Chairs in Heaven

The day started off much as my new usual. Wake up too early and cry. I knew going into the first major holiday it would be rough. I got ready for the day. Mike went in to get ready and I started watching the parade.

The Macy’s parade was something I remember watching with my Dad from when I was a small kid. We usually eat around noon or one. Then once we had Brandon, the tradition continued. We would watch the parade at home or come in and watch it with my Dad.

As I started watching the parade this year and listening to so many people talk about how grateful we should be this year to have a lovely day and be there in person amid a pandemic or how grateful we should be amongst so much loss and how grateful to be in general … I could feel the ugly crying starting but I just let my tears flow.

Mike came out and the next float was a favorite book of Brandon’s. I mentioned that and couldn’t stop crying. Mike suggested we go up to the site where his accident happened. There are crosses from us over there and from others also. I just sobbed. Eventually, I calmed down and we got in the car and left to come back home. I needed to see my Mom. I walked over and upstairs and straight into her arms. This started us both crying.

I think we could have all stayed in bed all day, but Dad and Brandon wouldn’t have liked that. My Mom, Aunt Vie and I made the food at Chuckie’s. When it was time to eat, my Mom had to say “don’t ya feel bad turkey eating turkey”. Every year Dad has said it in the past. Turn back a year and Dad had just had his huge fall down the stairs and we were so grateful to have him home and that was on all of our minds I am sure. My brother’s kids were all four there and were giving out plenty of hugs and kisses so I sucked that up even more than usual.

I returned home after the cleanup and until we needed to be out at Mike’s Dad and Step-Moms. We had supper there. We set a spot for B.

I found this prayer, The Empty Chair Prayer, online and we left a place setting for Dad & B so it seemed appropriate to read it at the beginning of each of the meals. There was no way I wanted to initiate the conversation about what we all were grateful for this year.

Throughout the day, I was receiving messages from friends & loved ones just as holidays past. I couldn’t tell a single one “Happy Thanksgiving”. Most asked how we were doing and I just said we had a rough morning, but made it through two good meals. I felt so ungrateful and sad and really did not want to breakdown anymore.

Grief Counseling & Journaling – part 4

I forgive you, Brandon, for driving at a fast rate of speed,vaping and all of the usual teenage angst. I now realize that it was usual for a teenager.

I will take forward from Brandon into my future the ability to help others and show my love to every person that I hold dear, because life is too short. ♥ I love you forever & ever Brandon.

I will honor Brandon in any way I can. I talk about our son everyday and never forget him.

Grief Counseling & Journaling – part 3

If I could talk to Brandon right now, I would tell him how much I LOVE HIM!! I would hug him so hard and not allow him out of my sight. Since I know the important part is “what I’d say to him”, I would ask him what happened on August 26th and what exactly happened at the time of the accident. Our understanding and the best guess is that he missed his turn was upset and lost control of the vehicle at a high rate of speed. He hit the embankment and flipped the suv. I really would love to know why and more about that day at school.

I would ask him how he was able to help so many individuals with his loving and giving heart. How did he do this and keep that part from us would be another question for him.

I would talk to him about his passwords, beats music and so much more that I can’t even express in a simple blog post.

Grief Counseling & Journaling – Part 2

Thank you Brandon for making me a Mom. I didn’t think we could have children as explained before. This was my BEST achievement. Thank you for loving me and your Dad. The last text I got from you earlier in the day said I’m sorry and I love you. I just pray you saw my reply before leaving school that day. Thank you for giving me reassurance of your love and the way you were raised through the young men and woman that attended your funeral and/or contacted us. Some have told us how much our family meant to you. Hearing that even now after your funeral does help on a bad day. Thank you for being such a big part of so very many lives, even if we didn’t know about it til after your death.

I’m sorry that I let Brandon drive only a month or so after getting his license that tragic day. When Brandon and I talked on the speaker phone and thru text earlier in the day; Brandon seemed ok. I’m sorry I did not go to the school and bring him home myself. I know it was a tragic accident and I know speed played a factor in this accident; past that I know nothing.

The day of Brandon’s accident I felt instant pain upon getting out of the car. I had received a message with his car and knew when we pulled up it was him. I begged the PSP troopers to tell me otherwise. They confirmed they had just identified the driver. I fell to the ground. We stayed there til the car was loaded up on the truck. Pure numbness took over as we made phone calls to the Grandparents and my brother showing up. Two hours later we were able to see Brandon at the funeral home and the loud sounds coming from my mouth were so instant. We only stayed about 20 minutes with him because we knew we would not ever want to leave his side. Numbness set in as we left. Throughout the next few days I went through so many bouts of pain and numbness and such a deep sense of wrong. All was now wrong with our little family. During the funeral, I experienced such a varied amount of feelings: love, sadness, anguish, surprise, pride and more. After the funeral, sadness of what B was going to miss out on and things we as a family would never do again or things we never got to do continue to be my constant companion. The weeks went on and this has continued. I have experienced feelings of great loss, sadness, anger, protectiveness and more. I’m still a bit numb in my heart two plus months later.

Grief Counseling & Journaling – part 1

OUR BELOVED SON
Brandon
07/16/04 – 08/26/21

Brandon was our only son and losing our only son has been a hard thing to experience. Probably the hardest event of my entire life.

My Mom and I are working with a grief counselor through the last hospice group that worked with my Dad. I think them offering to help us through the grief process is a HUGE help.

I was given the following questions to answer about B (Brandon) and my Dad. I already answered them about my Dad, but answering them about my son is much harder. I’m going to blog about each question or two when I can.

Journaling during grief is a good way to continue talking about B and Dad.

My favorite things about him
was his ability to be a fighter from birth and a fighter through life. We were told one month we probably wouldn’t get pregnant and one month later with meds; I was pregnant. Sick from day 1 and so worth it to have him. He was the biggest cuddle bug that I have ever encountered as a young child and after his death I have found out that he continued that “virtually”. So he loved and helped others that were struggling in so many ways. He dealt with struggles of his own with the ADHD/ODD/depression/anxiety, but helped others as they were struggling. Being a unique kid in grade school and through most of high school got him bullied and then he would react back. I think this played a huge part in his ability to be there for so many others. It also played a huge part in his behavior issues.

Brandon was a very smart kid that loved electronics, building things, gaming, music, the outdoors and RCs. Just to name a few things. He was always making beats or listening to music. His friend after he passed away told me it took Brandon weeks to learn and do what it took him months to do. He was so proud of B. I am so proud of Brandon. He not only liked these things, but he taught others how to do things too in gaming, scouting, and life skills.

I learned so much from him. I didn’t know anything about being a mom to a NICU baby or to a boy. He taught me how to love with with my whole heart. I learned how to take care of a little human thru a young man. It wasn’t always easy, but we got through it. Little did I know it was going to be cut so incredibly short by a tragic accident.

2021

Life sure has changed alot in the last 2 years since I last wrote a blog post. I won’t even try to cover all of that, but will start out with November 2020.

In November 2020, during the pandemic, my Dad fell and we were not sure he would make it. After 3 days in the trauma unit, he had a major mental status change and was sent home to die. After another mental status change, he began to improve and we all were elated. He just never really improved to “himself”. We were able to spend the next few months enjoying, spending time taking care of and just loving him. An “I love you and a kiss on the forehead” sure meant alot to him and I.

In December 2020, January 2021 and February 2021 the immediate family gained 3 beautiful babies. The littlest of my brother’s family was born in January.

From April 2021 to October 2021, we lost so many family and friends to death. Too many souls lost. We lost over 6 immediate family members and additional friends.

Our 17-year-old son was in a single vehicle accident and passed away on August 26, 2021. A day that will never be forgotten. We lost the best part of our family. He was our only child. It’s been over 2 months since we last heard his voice.

My Dad continued to decline and on September 19, 2021, Dad passed with his beloved by his side. We had him for an additional 10 months after his original fall. He was such a good man and didn’t deserve to decline from Huntington’s Disease. He was 75.

So 2021 continues and I pray daily that we will be spared anymore death. I pray that covid stays away. I pray that my family stays strong and survives the loss of my Dad and my son, Brandon.

After the Move ….fast forward a few months

The move that I was sure would be just myself and my son ended up being the entire family.  Things go okay for awhile and then go back to right where we were before selling the house and moving into the rental.

Oh yeah, the house showed 13 times in 4 days and sold.  We got a decent offer from 4 different individuals, but it felt right selling it to the family that got it.  The closing was in November around the same date that we moved in 17 years before.  Lots of crazy coincidences.  The rental we are living in is tied up in an estate dispute, but we are hoping it goes up for sale in the near future.  It has its flaws, but any will.

The sell of the house allowed for us to get new vehicles and set a year of staying at a seasonal site for camping.  Can not wait until summer……. lots of waiting until everything came through and was completed.

The Social Security hearing has come and gone and it has decided in my favor, but more waiting.   This was my first appeal and many often have to have them over and over.  The hearing lasted 10 minutes.

How have the last few months been health-wise for me.  The Huntington’s Disease Neurologist ordered OT & PT therapy in the house.  They were able to get me a wheelchair and I was able to get a rollator for a decent price online.  The OT really has and continues to help and I am hoping to start PT outside of the home in 2020.  Mentally, I still am dealing with a lot of guilt, depression and anxiety.  The depression and anxiety seem to be under better control with med changes.  The guilt as the therapist told me is something that I will need to understand and think of it differently.  She feels that I should think of guilt differently.  Do I think of the fact that Brandon has brown eyes and not blue or brown hair instead of red with guilt?  No.  Do I feel guilty that Brandon has a certain shaped nose rather than another?  No.  I didn’t know that the family had HD when Brandon was born and it isn’t know if he has the disease or not; he is at-risk.  That guilt and the guilty feelings towards the effect this will have on my family and finances going forward is something that is getting better and I will never be over it, but it will hopefully be something that I can control the feelings for.  I hope that make sense.

Christmas is just around the corner and just like the past 3 years, I do not have any interest .n the holiday.  It starts with the daylight savings time change.  I was on a normal sleeping schedule and now since thI am sleeping 12 plus hours a night.  Tree is up, presents are bought and unwrapped and I thinking ahead to Summer.

A Move….October 2019 posted today

It has been such a long few months since I last typed anything. It seems like I sit down and fall asleep.

Since the OD, I have been seeing the therapist as recommended and the psychologist as well. Some med changes. Some life changes.

My therapist was obviously quickly aware of my unhappiness living in the country. No neighbor visits. Not many family visits so many many days just me. I let the teenager and husband know that things weren’t working and after not getting much of a response, I decided two weeks later to begin picking up. I packed what I needed and pretty much got my own place. Though small and I do mean really small, this place is adorable and a fix to the issues we were not looking at.

Look a Little Deeper Please

My follow-up with the HD neurologist was yesterday.  I hadn’t been looking forward to this.  I figured I would need to go on meds again.  Woke up kind of late and rushed around for the appointment.  Blood pressure was elevated, but my chorea of my hands and feet were very minimal.  The exaggerated reflex responses in my knees/legs were minimal and maybe not there at all.  My gait was much better.  I have not been that un-shaky in probably ten years.  We discussed this in detail and she said I was in alot of pain and full of movements in the hospital pretty much the entire 2 months.  I told her it kind of just depended on the day.

She told me there are incidents with Parkinsons patients where they can zap a nerve or add a “shock” and their tremors stop.  She said maybe I lost/killed some brain cells and they weren’t the good brain cells and that might be why my symptoms seem less.  I said I’m not going to be upset about that.  I asked if it was permanent and she said to enjoy it because there is no way to know.  I know with more physical activity (eating with silverware, holding onto a cup, walking, standing, sitting etc) that my body tires easily.  I still have trouble walking up stairs and need naps alot.  At bedtime the restless feeling in my limbs does and is there.  Somedays worse than others.  On those days sleep is elusive and I stay on the couch most of the next day.

I have memory loss around the event and of the weeks after and it is disturbing, but many just keep telling me its probably a blessing to not remember what really happened.  I have many false memories during the time in the icu and especially right after the tube and sedation was removed from what I’ve been told.  I just ask someone and usually I forget already asked and have to ask again what really happened.

I have a very short fuse and even shorter tolerance for people.  I force myself to try and interact with others.  I try it in smaller doses and stay home when I need to.  I feel angry that I have to ask for help, guilty for having this life and mad when the help just isnt there for some reason.  It is such a vicious cycle.  I was an independent productive individual and these 15 years leading up to now  have changed me and of course my relationships with others. I could tolerate groups of people and loved to be with others for fun.  I miss work. I miss friendships and my goodness do I miss my smile.

I’m seeing a therapist and the doctors necessary to work through all of my health issues.  Hopefully, I can get the emotional and mental ailments at a good place and the physical can get better too.  I will never be who I was before.  I need to accept that and move on to who I can be now.

Yesterday, I shared with some family and friends that I didn’t get any negative news and needed an ekg.  That message lead to starting to text with a friend that’s been there in my life for almost 30 years and it really helped.  She told me how my OD affected her and her family – many of which I’ve known just as long or longer than her and that after a few days of just not knowing what was going to happen that they decided to pray differently and let God decide.  They knew I wouldn’t want to be lifeless and unable to live a productive life.  I dont want to type the conversation word for word as it is private, but it really tugged on my heart that these people would do that for me.  I will summarize….she told me that she felt this brought them an awareness of each other and that giving it to God brought her and others sense of peace themselves.  We continued to talk about other things going on for quite some time and things I remember and things I do not.  It was an emotional series of texts, but I really think I needed it.  For those other individuals that prayed that day with her; know I am so grateful that you took your time and your thoughts to pray or just ask for a change to happen.  I am so thankful for each of you and if you are reading this I hope you know it.  Much love and gentle hugs.

This person, my friend, told me that my smile is still there even though I dont see it.  She said it is in my eyes.  Someone else told me it is in my hugs.  So if I seem sad or angry….. look a little deeper please!!!

 

New Chapter & Updates

I had my intake interview today and they are going to work through scheduling appointments and getting records. 2 hours went pretty quick. She said I will hear back soon.

I’m looking at this as a new chapter in my life and new opportunities to enjoy the small things without so much anxiety and pain. Prayers are always welcome.

My social security hearing for the appeal was rescheduled for October. Since I have alot to add to the case it is probably for the best.

I should be forever thankful for the amazing people in my life. I most likely should have been dead. I also had always remarked that I wanted to be a DNR. Because that was not in writing, it isn’t something that was applicable or my choice in the instance of caring for me. We as a family learned how difficult it is to pickup pieces; like paying monthly bills and other legal matters. We will each have a power of attorney for each other after this. Advanced directives and donor information will be on file. Important choices that aren’t always remembered when the scary situations occur. My husband really did a great job doing this while starting a new job and being there with me. My Mom and Brother also working with him so my Mom could be there. My son had just moved to the alternative school and spent alot of time with me in the icu. So many wonderful AHN employees telling me what a wonderful son I have.

After they had me stable and were discussing progress forward and questions about my health history, my son had picked up my health alert bracelet and wore it daily. He showed the hospitalist how to use the scan and he got all the info he needed etc. That hospitalist was impressed that a young teenager was able to discuss and offer solutions. I’m so very proud of him. I’m very lucky to have this close knit group of individuals that sent cards, texts nightly or even more often to my family to see how I was doing. An uncle drove my Dad to see me. I received cards and a beautiful bouquet once I was out of the icu. When I was in the icu some very special cards decorated my wall just waiting for me to be able to see them. My cousin and her daughters were in Pittsburgh for their own appointments and stopped over and it was so lovely even for the brief visit. Others so graciously gave my husband cash for parking and gas. When he told me that, I was so greatly touched. If I haven’t been able to thank you properly in person please know that everything and especially the prayers were more than appreciated. My friend Timmy and his wife also visited. Goodness it was a particularly goofy day on my part. My Mom told me and I was so sorry I couldn’t remember more of the day. They are a special couple. A few weeks later he even brought me the cutest stuffed animal to my Mom to give to me since I had moved to the new hospital.

The severity of my attempt made it necessary by the hospital to insist on having a person watching or sitting with me 24/7. This was even during the times family was there. The nights my Mom didn’t stay these men and women became my companions because I couldn’t sleep or just to talk about life, kids, goals etc. I often had the same person multiple times and that was nice. They saw such a difference from the icu to the first shower and just helped me alot. Even when I was not always the easiest to deal with or just needed a dark room with no beeps and noises for a nap. They always would ask about my Mom if she wasn’t there. I had a few young ladies that spoke English as well as their own country’s native languages and it was interesting learning about them and looking at pictures. We shared alot of pictures once I got my phone back. They accompanied me to therapy sessions and assisted the nurses and aides too. Great group of people let me tell you. Sharing and talking made me able to start the physical healing process and get thru that to move on to the next step. Top notch staff for the most part no complaints. I made sure I told them this every chance I got!

After the Attempt

It has been quite awhile since I last wrote.  So much has happened. This will be a long post.  Maybe it will help someone else ask for help sooner.

I had a serious suicide attempt on May 14th.  I do not remember much.  I do not know what caused me to come home and take so many meds. It can happen to anyone and no one can say never me.

Obviously, I was not successful and I have loved ones and an amazing amount of skilled medical personnel from what I was told to thank for that.

My bff from Ohio sensed something off in a text and called her sister who lives on the same street as my folks.    My Mom and Aunt came out here to my house and I was unresponsive already.  I was told I parked the Suzuki in the driveway and left my knee scooter there.  I do not know how I made it upstairs or around the house since I still was wearing my boot and dealing with pain from the ligament tear, etc.  I locked all 3 doors and kept my beloved Zeus locked up.  I remember none of that.  My son was dropped off at my folks after school since we had planned on attending the Livestrong class that evening.  Thank God for that because it wouldn’t be something I could ever forgive myself for if he found me. My Mom still sees it and I feel so sad she has to remember it.  Once I was awake and admitted to the Rehabilitation floor for PT, OT and speech therapy as well as still receiving medical care, I began to ask questions.

Some of my first memories were off the wall dreams similar to things going on around me and possibly just some of the horrible pain and anxiety over certain things leading up to this.  I guess the tv was on Catfish and Ridiculousness and those along with commercials and other shows kind of seemed like reality.  I even had an odd dream about Meg & Harry which I know now that my Mom and I watched one night.  I was so sure of so many things and adamant that I knew they were true.  No matter how many times I was told nope. I have talked to my husband, my son, my mom and my brother about some of what happened.  I don’t have much of a memory from Easter to Mother’s Day.  I do remember falling and church.  If my Mom hadn’t told me about my flower from B I wouldn’t have remembered that.  I can remember things from many years ago and not that period of time.

I was taken by ambulance to a local hospital.  My Husband beat the ambulance there from where he was working that day..  I was told I wasn’t there very long but they did let my Husband and Brother see me.  I was told that LifeFlight was ordered as I was being sent to a scan.  I arrived at West Penn Hospital and was taken directly to ICU.   I was told that the Doctor Kaura who runs that area was there everyday.  I guess they worked for hours on getting me stabilized so my family could come in that evening.  My husband said the Dr  deserves every penny he has earned.  They had many talks about me, my fight and cars I guess over the next few weeks.  Dr. Kaura is who told me what I did.  I had no recollection of taking medication and leaving empty bottles on the bed while basically saying goodbye via text.  I just can not understand why I do not remember it?!?!  My family was by my side as much as possible.  They were in a separate room to hear the worst together and in the icu room when my son said an eye flutter gave him HOPE again. He said that a few times they thought I squeezed a hand after that too.  I was placed in what I was told was a medical coma via sedation.  What I know to be true I have found out from talking to my family and sitters that were with me. I am still working through that. I was told I was quite a site.  I have apologized profusely to my loved ones for having to see me like that.  My husband had to tell my son that they were fighting for my life.  My son told me they were all besides themselves when Dr Kaura was not sure if and when I woke up what I would be like. I had 2-4 picc lines in my neck after the only arm they could use just was not supporting the amount of fluids being pushed.   15 bags at any given time.  Hubby said at one point I had meds coming out of my eyes. He said I looked like I gained alot of weight and was swollen with my eyes barely visible.  I had a midline placed and there must have been 8 iv’s or 8 attempts near my wrist.  I’m a hard stick on a good day.  My other side can not be used due to the breast cancer lumpectomy.  They said I had an NG tube to put charcoal in my stomach and take fluids back out as well.  I was intubated.  It isnt really clear if I aspirated at home or later, but I developed pneumonia along with some other issues.  I think I was told that I had severe respiratory distress. After the sedation was stopped and the ventilator removed, I remember many heparin shots in my belly.  I remember breathing treatments and oxygen.  I was very weak at first and over the first few weeks I lost between 20 & 30 lbs.  I hadn’t been out of bed or stood in so long so that was exhausted and the first few days out of the icu were rough.  I would often “lose time and get confused again”.   I guess the intubation and sedation can cause delirium.  I also had to deal with major muscle cramping.  Lots of shaking and discomfort.  I hadn’t been taking much medicine that I’d been on a long time.  Nothing for any of my chronic issues.  Being out messed with urinary retention again. My heart had/has an arrhythmia in the QT being  prolonged.  This means no meds like antidepressants that can make it worse. I must be very careful.

I was moved to a regular floor after the icu and honestly alot of that is a blur.   I was confusing dreams with reality again.  Thankfully not as bad as before.  I remember the hospitalist came in and they had been trying to find someplace with a quality rehabilitation program to work on physical health so the mental could be worked on next.  No insurance meant I had to stay at West Penn.  I was discharged and readmitted to that floor on 5/31.  I started my evaluation for speech, physical therapy and occupational therapy the next morning.  Taking a shower exhausted me, but gosh did that warm water feel great.  Sitting in a wheelchair for hours was just so painful.  Around this time, I started to have some bloodwork issues.  I developed pancreatitis and had an excessive amount of calcium.  This caused dehydration and muscle cramps. It is the only time I recall crying. It was horrible.  2 days of severe pain and right back at therapy the next day.  I knew once I was more independent and a bit stronger I was getting admitted for psych care.  I was admitted at the original hospital and other than saying how disturbing it was I will say I was so so happy to be moved to the geriatric side.  Over 60 I am not, but the environment on the other side just was disturbing to me and was getting worse.  It was like jail.  I had to stay because of the prolonged QT in my heart EKG.   The med raised it.  CPAP was suggested as another cause of the results being elevated.  This will now be a life long concern.

I am sure I will never know to the full extent of what I went thru since that fateful day.  I know it has changed our lives. My son told me it has brought us all closer.  My Mom said that she never realized how overwhelming life was right then.  But I still do not know why I would do that.  Pain? Anxiety? Depression? Anger? Overwhelmed by life, deaths,etc? Some people think it was due to meds I was on and tapering off possibly or a combination of many things. I know I have alot of therapy to go thru and I do not know if trust will ever be something they will have in me. I hope I can earn it back.  I want to have my smile back.  I want to be healthier and continue to be able to enjoy the small things and work on the excessive worries and feelings of guilt.  It is not fair to my Husband and my Son to have to be financially struggling because of my stupid illnesses!

Off for the intake appointment to start getting therapy and hopefully feeling better tomorrow.

 

 

new starts & MIA smile

Brandon is settled in at the “new school” for the total of 17 days. He comes home fairly happy and a smile on his face. I do not know the last time I have seen that face after school. I just pray everyday that he stays calm and nothing happens. The place they want to send him to in August is different than where he currently is. They will have more emotional support in place.

He’s been enjoying going to the YMCA and using the weight room machines, the warm pool and basketball court even if he is on his own. He’s doing ok so far with that.

Mom and I are doing the Livestrong program at a local YMCA and its Tuesdays and Thursdays for 12 weeks. So far so good. Pretty sure I overdid it on the hurt foot yesterday.

Husband started his new job and you can say holy culture shock batman! He is sticking in there but all this standing isnt easy on him. I feel bad that I cant work. I feel bad I forget to cook or a million other things. I feel bad I have to put my family through everything.

Fast forward a few days and I realize that my smile isnt just changed it is gone.  This is sad.  I got my teeth taken care and my mouth muscles etc just doesn’t look like a smile….this made me sad.  I cant imagine losing so much more of me.  I’m a bit emotional this weekend.  I just can’t imagine what kind of person I will become.  I just hope that my family and friends remember me before not after.

With a lowered amount of medication or taking none of others; my body just isnt a happy place to be.  I have pain in places and more pain in others.  Goes to show the world how much the medications really were doing for me.  I have something pinched in my shoulder and back.  I can not get it to work out.  Cant sleep on that side.  I may try to make it to the Y tomorrow to get in the warm water.  Maybe that will help.  My damaged foot showed healing aka new bone at the area that was fractured and the pain in that area and the sharp stabs that increased lately is most likely lack of medicine that was hiding the severe pain/inflammation and masking the true physical pain.  The PA said its probably a bit of both.  I’ve been walking on it again the past few days and it hurts enough to force me to sit all evening. Ice is my friend.

I’ve noticed that I’ve been getting headaches alot last weekend and into the next.  I am thinking this is most likely due to wearing my contacts last Thursday and not having a good diet.  Too much sugar and too many wrong foods.

I also became aware of the severity of the sound bothering me lately.  In the car, tuning into particular stations or audio from music apps just mess with my thinking and I could just grab my ears and head.  Most of Bs music gives me a headache as soon as it is turned on in the car.  If I’m driving, I cant pay attention like I used to. B asks for a question or holds something up and I just can not take my eyes or concentration from the road.  I don’t often listen to the radio anymore.  I have found since attending the Harvest services that I found a new music genre that I like.  Especially to calm the body and calm the soul and do listen to some of that.  I enjoy music but do not need it the way B does.  I’ve read that kids with ADHD can be soothed by the music they like. How anyone can be calmed by listening to the hard core stuff he listens to most of the time; I don’t have a clue.  I haven’t read a book in such a long time.  I used to love to read and read all the time that I could.  I just cant hold the phone for the hours after hours and it makes me nauseated & sick to the stomach….then I get a new headache.  I was reading the Bible and it was happening with that too.  Ugh I miss it.

Told Mom this week that I really need to do my scrapbooks before I forget the memories or get to shakey for making the pages and journaling.  Could kick myself for not keeping up with it.  Hopefully we can put a real dent into the digital and printed pictures.  I love being crafty!! I miss it.  I sorted my beads that needed separated and put in the plastic containers and hopefully can make some bracelets for Spring & Summer. I haven’t done any new ones in quite a few weeks now.

I have the worst time with cleaning up after the family.  I need to get up Monday and get to cleaning etc so the guys can run the sweeper.  It takes me a really long long time.  I have such a hard time up and down until go up down again.

I guess this is quite random amounts of conversation and thinking…my brain goes from one end to the next all the time.  I feel like I’m on a merry-go-round on the evenings it doesn’t stop.

My Dad is concerning me.  He rarely leaves the house unless its for food with me like yesterday.  He could not stand very long at all & I noticed he got like a hot flash.  He sleeps, rests, watches TV, and sleeps some more after eating usually.  I noticed the movements of his body were really off today even for him. I worry his loss will damage our family beyond recognition.  I just continue to pray & pray that he will not get to experience the late stage activities.

Here’s to a wonderful moms out there …I have a great woman as my Mom.  I could never be as kind and patient lady as her.

My Mom is pretty awesome & amazing!

 

 

Brandon

To Whom It May Concern:

I am Brandon’s Mom first and foremost and I think maybe I should have been fighting harder for him these last few years. I regret that in elementary school I did not push for an evaluation harder. He started kindergarten as one of the youngest kids and although very bright the immaturity seemed an issue. I was told he was okay and boys grow out of it. He was born premature and in my heart I know now it was an issue. He was given extra busy work to keep him occupied. In third grade, the teacher indicated all of the behavioral problems and almost daily calls were not due to him being bored. He did not have good social skills with his peers so instead we took him to a therapist about a year and he knew what to show her and then couldn’t hold it together after. I regret that in middle school when he continued to tell me that he was being bullied and pushed around that I did not stand my ground and insist again that he needed evaluated. Instead we took him approximately every 3 weeks to see a behavioral medicine person and only saw minimal improvement. The bigger behavioral problems continued. We were continuously told he was impulsive and had ADHD, depression and anxiety.

Not once through this all were we told of all of the issues and comorbidity that exists with this diagnosis. This poor kid just couldn’t win. We were quick to listen, because neither of us was familiar with ADHD and thought we had to be getting fair advice. I think we were wrong. Living with the impulsiveness, back- talking and behaviors were hit or miss. He went through 7 years of hardly having friends. We live in the country so he doesn’t have neighbors. We tried to compensate that with fun outings or vacations and that too wasn’t always a success. His frustration would often lead to even more frustration on our end. When he would find a friend or tried to make choices it was as if he never learned from his previous mistakes and didn’t handle interaction in groups well. He has always been too familiar with others; too trusting and gets friendly too quick. People are not usually that quick to do the same. He has a huge heart and it often gets put down. One on One he is a totally different student/person. I have been told this way too many times. We were told that the immaturity would definitely get better. It did not. He often would hold a conversation with an adult or small group of adults at their level yet when it came to peer relations he just doesn’t do well. He seems to try to hard since he has problems in that area. I know how sad it makes him and the amount of times he felt why bother was always there. I think this feeling often led to the sneaky behaviors to gain attention from others and his family. We were correcting and punishing in every way; praising and rewarding in every way possible and it just never seemed to do anything. I always blamed myself and my inability to have another sibling or my chronic health issues. High school and 9th grade immediately became an even larger problem. The small issues with peers had become huge. It was a daily fight to get him to school as he had no interest in going. Electronics were a huge fight because they became his best friends. Listening to music that he claimed calmed him down or playing games became a huge argument especially after the behavioral issues became bigger. Take away the phone and he would sneak to get a laptop or tablet to get online. He was getting online at school or at a relative’s place. I was defending him up and down early on not knowing that he was doing stuff online. I was devastated and hurt. He continued to do it. Even when he said I’m trying and I didn’t do anything things would creep out of the woodwork. He really doesn’t do as much as it seems; he just doesn’t learn from trying to impress others in the wrong way. He looks for approval in all the wrong areas.

When we finally got to the need for an evaluation and report for an IEP…..its shown that our bright young man is still there and the ADHD, depression and impulsivity are still there and he also has aggression and frustration and embarrassment to deal with along with every other person in school. He always says he is treated badly and no one sees it. He said he has one friend. One friend!!! This angers me for him. According to the report and evaluation, he is dealing with emotional disturbances that negatively impact his life and those around him. Should I not fight for a plan to be put in place and not have him sent to the alternative education or should I just let it happen? I do not think that it is going to be the answer to all their problems at Freeport or his problems. He should come first.

In talking to a friend familiar with ADHD and the other problems that a kid or adult have with this condition and learning or coping with the executive functions. His medicine could be partially responsible for some of that. He needs adjustments to his environment that will help him succeed. Will he get this help at the alternative education school? This friend is also involved with teaching students just like my son. She gave us a list of resources as well as making it known his maturity will come and usually between 9th and 10th grade. Is alternative education right for him? She encouraged him to make smart schedule changes, electronic reminders, brain dumps, and lists. My son’s guidance counselor was doing some of this with him in the academic support groups. The counselor was one of the few people that my son felt really cared for him. He never felt like he belonged in the schools in the district add a lot of impulsivity and I can see why he didn’t like it there or the people. Kids are cruel and often unforgiving.

Chuck

This is Chuck. This is my Dad. This man is a Husband, A Pappy, a Brother, an Uncle, a retired OTR truck driver, a neighbor and really so much more to those that know him. He is also HD+.

He found out approximately 10 years ago maybe even longer that his family genetics put him at a 50/50 risk to have the gene from his Father’s side of the family. His Father passed away of cancer when he was young. No one knows if he had the disease. Chuck’s brother, a Vietnam Vet, was or had already passed from the ravages of this ugly disease. For so many years they blamed the medical issues on agent orange and injuries from car accidents while intoxicated. By chance before he passed we were told he had Huntington’s Disease. None of us had heard of this. I remember reading about this disease and calling my relatives to tell them his siblings should be tested. They had watched this man fade away over the years and now testing to see if they too may have it. Some of my Dad’s siblings are half-siblings and they didn’t need to be tested. Of the 3 sisters and 3 brothers, who were now known to be at-risk, only 2 showed that the gene was present and resulted in HD + test results. There were cousins of the siblings that were diagnosed as having Parkinson’s and it is my belief that they too had HD. My Dad moves alot like those relatives. Many of my cousins and myself already had children and some grandchildren. These kids were all considered at-risk. I know of four of the next generation that were tested and only 1 had the disease positive and another the gene positive in the gray area of may or may not be positive. Myself and my Brother were these two with the gene positive. I was symptomatic. My brother in that gray area of unknown. Our 4 kids are at-risk.

When my Dad was nearing the end of his over-the-road trucking job he was let go because of a clause in the DOT CDL requirements that you can’t drive with it. He couldn’t do the job he had been doing for almost 50 years. The gene had always been there and we just couldn’t figure out why they could do this. The GINA Law was in the process of being passed. At that time, he was seen by numerous Neurologists for the company and for himself locally; all felt he was not symptomatic. I disagreed after doing some research, but knew he wasn’t going to treat it so when never pushed. I spoke with the HDSA at that time and spoke with a social worker several times. I read everything I could find. It was the social worker’s opinion that because of his age at what was possibly onset he would never really see the end and really bad parts. This was our hope since we found out. If one has the gene and a repeating CAG of 40 and higher at some point the disease would be seen. We continue to hang on to this hope even now that he is in his 70’s and definitely showing signs.

Symptoms are quite apparent as he ages. He really can’t be left alone for long and recently has decided driving is too dangerous. He also takes a blood thinner so falls are very scary. My Mom is his main caregiver. She manages his money because he has lost or given someone the bill. He forgets what he was doing. He gets stuck on topics. He can sound very aggressive and unruly to those that do not know he has this disease. He has fallen and walks with a changed gait just like a highly intoxicated person. Twice he has had run-ins with law enforcement. Once leaving a Club where he checked in daily and bought a pop. A pop. He has not drank in years. Instead of offering to help him home, the officer drove away. Another time during an open conversation between an officer and another family member, he was told that he needed to go back inside and be quiet or the officer would arrest him. I had told the officer several times that he had Huntington’s Disease and really couldn’t control how he looked and sounded. He was just asking a question. It was an eye opener and really upsetting.

A few years pass and Chuck is continuing to get more symptoms and loss of memory or thoughts in process is quite common. He attends a daily lunch offered to the county’s residents that are 60 and older as well as their caregivers. Good program. He used to go in early and help others. Certain individuals would get in an argument about an open topic and he’d say sorry but this is the Huntington’s and not me. They moved a large coat rack and not the smaller one. My Dad talked about that for 3 days. The toilet in the mens room had a small leak/drip and he would mention it daily. I had to educate the worker there that was berating him and others. Very upsetting to have to do that and they say he’s using it as a crutch; omfg it is a disease and he can’t help himself to get stuck on thoughts and topics day after day. It also came to our attention that this wasn’t the first time. My Dad is usually fairly go-lucky and friendly and suddenly wasn’t going to the Center everyday and when he did this woman seemed to be picking a fight. What a shame. It is now resolved, but months later he still doesn’t go down as much. He would rather stay at home. We are getting him out a little more as it warms up.

At this stage his symptoms include memory loss, loss of thoughts, hand tremors and chorea as well as unsteady gait. He is definitely is argumentative and doesn’t always remember the right story. Many times he will stand there watch TV with his coat and tell you goodbye and his plans over and over. Some get mad. I just tease him out the door. He isn’t so great at a lot of noise around or multitasking anymore. He’s never really had a filter, but it is a bit worse. His balance scares us that he might fall real hard and bleed internally from the blood thinner.

He isn’t just the disease. He has a huge heart and often that isn’t reciprocated by those I like to say are relatives part of the time. He has set patterns of talking to people around the post office and the center. He hasn’t been going and they miss him and wonder how he is doing. He enjoys the attention. He loves to crack jokes or tell people how much his BP is affected by the ladies. My Mom is usually the person on the other end of his jokes and she gets irritated. But that’s him and he still has a voice so we shake our head and joke back. He is a neighborhood staple sitting on the porch and tossing out advice and many hellos as the neighbors go by. He is a good man. He watched too much TV and infomercials.

So I guess my mural of this post is you never ever know what a person is suffering or going through. Be kind. Be helpful and do not make fun of these people. Education and advocacy of HD is definitely something that should be discussed with family members, doctors and others in the community.

Friends apply within – drivers license required 😜

Pain because of chronic illness really does push way too many buttons. It is constant most spots and sharp in others. Do I take pain meds? Awe NO. I have to limit the amount of Tylenol I can take to help reduce migraines. Did you know that taking Tylenol for discomfort can do that? Most people have no clue. I know a lot of this is from not taking as many meds due to the stopping of my insurance. It is also due to my untimely flop off the skooter. Bruises everywhere. I can’t take ibuprofen because I’m on antiinflammatory and they can really hurt organ function. Most people think I take pain meds…not unless I have a major surgery or procedure where I get it in my iv. People who don’t have chronic illness just don’t get the pain and feelings that we feel. Sigh damp day equals a sore fibro sufferer. I was told to basically suck it up recently and live with it.

I wanted to stay in today, but was concerned with the storms predicted I would have trouble getting parked in the backyard. I’m unable to get in the house any other way. No ramp, but its doable. If we had lots of money the driveway would make sense back there lol so for now we drive thru the yard. I’ve been helping my parents look into costs of stair glides for better accessing the upstairs and worry if they can’t afford it what are we going to do (they need two for their staircase 😦 People work hard and have to search for help and others just fall into assistance. It will be a huge help for Dad, carrying laundry up and even if Mom or Aunt Vie are having issues with the stairs. We also need to find a personal emergency button system for Dad too. I don’t want him to age. Mom doesn’t so why should he ?!?!?!

My Dad has HD and has the same CAG # as I do, 40. Crazy how early my symptoms started and his much later in life. It truly is a unique experience for each person that has this ugly disease. He has recently stopped having interest in driving, but still trying to keep him a little more active. I usually can tell him something or talk him around. Mom gets so frustrated sometimes. Mom said she learned a lot at the education day and I too took away a good bit of info. I was surprised that the number of individuals attending was pretty low. I guess I should have expected that. I think he actually was showing more possible symptoms around the time he retired….forced to retire because the gene not the disease was found. It was a too thing, we now know he must’ve been having some issues mentally the last few years. I think it wasn’t as noticeable as now since he was still driving over-the-road. I see him almost daily and see such a difference. Makes me sad.

My Mom is the only person besides my Brother that wants to talk or ask questions. My guys just want to look at their TV shows and electronics. Lol as I type on my charging phone. I am an up front and too open person and I just guess others are not.

I have always kept alot inside so this blog and the Facebook groups are pretty important. I told my Mom today we need a friend or two so someone else could drive 😝 I’m sick of driving.

I backed into a stop sign yesterday leaving some movement of my bumper and some breakage. I figured the Husband would be angry. Ugh I have never backed into something like that. How embarrassing. I seriously hate driving and always have. I got my license for our independence so you would think it would be fine.

Mudpuddles and Skooters

Life is not where we expected to be.

Chronic diseases and changes in employment really puts a huge damper on life.

Family, good food, and an overabundance of love sweet love has helped.

We had a nice Easter day together. It started out rough but ended with the three of us at home.

So why did I entitle this post mudpuddles and skooters ? I spent time on my clothes, hair, and makeup knowing I really wanted a new family picture with all of us and we were going to go to church with Chuckie, my brother. We had to park up the street from my folks and were not sure how I was going to get down there and when I got down there how I’d manage the stairs. I was cruising along on my skooter on the street and saw an empty space between the cars that I thought I could cross over on the skooter to use the sidewalk …………I felt my balance and skooter going opposite directions and fell on my duppa in a mud puddle. I’m pretty sure even a full bubblewrap suit would not help. I was so embarrassed. It all happened in slow motion. Boy was I glad I wore a black dress and not the bright orange dress I planned to wear. A quick throw in the dryer left me scrambling to get ready again. I was so aggravated that I couldn’t even move the skooter properly and joyous that I wore undies lol. My guys were behind me some and quickly helped me up. I have to say without their assistance throughout the day meant more to me than as anything else. My Mom came to the rescue yet again. The feature image is after the fall.

My balance today was off kilter more than the norm. I know stress and anxiety make it that way too. Big thanks to my guys for picking me up.

Who I am – Part 2

Coming from such large families, we enjoyed reunions each year on my Dad’s side. We always had a good time. Most of us only seeing relatives for a single visit each summer. I tried, as did others, to continue the tradition once Aunt Betty was gone and it never was the same. I can remember family gatherings on my Mom’s side. We had started a new Christmas tradition, but once Aunt Pat was no longer with us it too felt odd. Families drift apart. Friends drift apart. Life goes on for each of us a little differently. Social media often seems to take the place of reunions and picnics. How sad.

My past relationships with boys/men were complex and often disappointing. Most were better as friends and others out of my life. In one of the hardest times of my life; I met a boy who I then matured with. We turned 21 and had fun with friends and realized together just what we were risking going out all the time. We wanted a home of our own. Mike asked me to be his wife and I accepted. He showed me his strength, kindness and love when I needed it. Things aren’t always easy, but along with our family we are still trudging along. He said for better or worst; for sickness and health. Who knew shortly after we were married he proved his love and keeps the promise. Not always easy. Not always difficult. Our relationship is not the romantic one I imagined as a teenager, but he can be a great caring individual when I need him. He cooks, picks me up out of mudpuddles and off the floor. This man has literally carried me on his back to get me taken care of. We only had one little miracle and he and I handled the scariest time in my life; being sick, pregnant and scared to death that the baby boy I had wanted for so long wouldn’t make it. We did it. We still do. Yes we don’t always agree, but we find a way eventually. One person in a family unit with chronic illness definitely stresses the person, but also loved ones, coworkers, friends if they stay around. Friends often become acquaintances ….I’m not sure where they went 😦 so this man and my chronic illnesses have influenced my life immensely over the last 22 years. He has shown me the appreciation for nature’s beauty, the tickle of the nose at the first cut of hay, and given me the knowledge and assistance to be a responsible gun owner.

Yesterday, a gorgeous day before Easter he along with my Mom, Charlee and my brother Chuckie attended an educational day for HD. I was surprised he said yes when space was still open. It is a scary horrible disease. I can only place my faith in God that my having this disease is so that others may be cured later. We don’t talk much to each other. Our teenager attended an HDYA retreat for a day. He didn’t want to leave. I am hopeful that I can raise awareness in Armstrong County and maybe in Butler County too. Brandon, my teenager, is excited to be involved in a way to advocate for the illness. So these diseases that disrupt my life – our life – may some day soon become eradicated and in the past. The disease have been huge influences on who I am.

My parents, as mentioned previously, were always offering any help to family even if they too struggled. I’ve had numerous aunts and uncles that lived with us growing up. I can remember my Dad’s close friends joining us for holidays because we were their family. I had good role models growing up. Aunt Alice, aka Gert, left her youngest sister, my Mom, live with her more than once. I can remember much about her being in our lives. Her passing greatly affected the family dynamic. My Aunt Viola lives with my parents now. My Mom has helped both ladies with illness and becoming a caregiver. They work together to make meals and care for my Dad. The love that is offered between my folks and the Aunts & Uncles is quite the lesson we earned as kids and continue to see now. I truly believe my eagerness, even when my illnesses get in the way, to help people I’ve known forever and strangers.

I’m ME because of the people that have travelled along with me on my journey called life. Recently, my faith has become a huge daily influence. I am trying not to sin and trying to pray often. I pray for strength to get thru my life. I get frustrated with chronic illness, HD, isolation and so many other things. I pray for a cure. I pray for safe travels for others. I pray for peace in all of this. It is incredible to be able to learn about the word of God again. I feel like I need to be there.

Who am I? I am Heather. I am opinionated. I love to be around my family. I believe God is good. I am often too honest. I have a huge heart. I miss many. I am who I am because of many family members, old friends, new friends & many more, amazing and not so amazing, individuals. I am not my chronic illneseses.

Disclaimer if family or friends are reading this – don’t take it personally if I haven’t mentioned you. I’m sure whoever you are; you have influenced my life in some way or another.

Heather – who I am part 1

Losing loved ones or watching some close family and friends become ill and fragile is tough work. It’s emotionally tiring, and it also creates all kind of questions and guilt.

As a teenager, I often felt alone and just got used to deliberately being alone. It always seemed to be that it was easier. In school, I always earned great grades and always wanted to learn. I always said I need to learn something each day. Now I can’t always get thru a sentence. I can’t recall where the conversation came from or where it was headed. I have trouble standing a long time and sitting upright isn’t any better. It is really hard not to be able process thoughts and multitasking has gone bye-byes. I feel so worthless most days.

So, I figured I would share why I feel I am who I am today. Ever since, losing a loved one I think about life influences. I lay awake at night hoping, wishing and praying that I have influenced someone the way I think I was influenced and loved.

I can recall when I was younger that I never felt quite a part of those around me. My parents were hard-working and loving and eager to be parents and not best friends. They looked out for my brother & I with everything they had. They were strict, but fair. I didn’t realize that all those years ago. I tell them now every day how much I love and cherish them.

My mother became my hero although growing up I didn’t want to be anything like her. I wanted nothing to do with the soft heart, soft feelings, smoking, etc. I got my license ASAP to be more independent of others. As I’ve grown, I see a woman that manages the home, the kids, the finances all without my Dad being home. As an OTR driver he was often gone for weeks at a time to provide for us. It couldn’t have been easy raising us, but she always did it. She found a way to provide for little extras and help out with things when it was needed. Being Daddy’s Girl, I always would enjoy talking on the phone to him daily. I can remember hearing the whoot whoot of the air horn and running to meet him. It was something the three of us looked forward to. Our vacations were spent traveling with my Dad in that rig. I know I don’t remember it all but what I remember is that it was always us 4. I always hoped to meet a romantic love of my life. He set a big standard for any new guys in my life. We didn’t always get along. Life wasn’t always easy, but I had a good childhood to be honest. As I became more than just a nerdy kid, I often got frustrated by how so many would take my folks for granted. They weren’t always included in my Dad’s side of the family; we were often doing life with my Mom’s side. In many cases, it seemed like people thought they were a bank. I was and still am often just too brutally honest. People don’t know how to put up with that. I was too independent. Today, my mom and I have grown into a set of best friends. I’ve helped her become a little more outspoken and colorful over my 43 years with her and she’s passed along her emotions and her huge heart. What a heart. I’m proud to be a Mom and their daughter because of the love and support from these two people. They are my parents and I can’t express just how much love for them I have. I continue to be taught by them all the rime .

As a bigger sister, I think I struggled with having my bother always involved or around. We were night & day in so many things. After I graduated, he and I did become better friends. The years between Army enlistment and making me an Aunt three times over have been wrought with jealousy, anger, resentment, unwavering sibling love, disappointments, etc. I would now classify him as my first BFF. I was excited to have a baby brother one September in 1979. We don’t always agree on how to get to point A and point B; however we always make it back to our folks.

My Dad always seems like the black sheep of a family of 9 siblings. He worked hard. He loved us with his whole 💓. However, he struggled with social drinking and I knew I didn’t want to see him get hurt or sick. I was happy when he stopped. I didn’t want to lose him to the drink. He didn’t drink all the time, but when he did it was often rough on him. He always was a big teddy bear that looked like he could bite. He didn’t. He was made to retire because they found out about this genetic disease. He had Huntington’s Disease and was diagnosed with the gene positive after his brother passed away.

My Aunt Betty was in my opinion the person I was meant to be like. I thought of her as my special person. We all knew I was the favored niece lol. We joked about that & even signed cards like that. She was unique, honest, giving, loving, colorful and pretty loud and obnoxious when she wanted. She had some strong beliefs and although she’s no longer here in a body, I can often feel her being a part of my hard headedness and love of brightness, jewelry, speaking my mind (and that is just a few things) and she’s always in my heart….. gosh I really loved being her niece. I definitely got my love of reading nonfiction and romance from her. We both could read and read some more. Her purse and bags were always full with wigs, books, jewelry lol. I loved when she would visit. I remember red red hair, pink cheeks and dimples. She took me to Italy to visit, because she knew I would appreciate and enjoy it more than her husband even 😉 People still tell me now that I’m acting like Aunt Betty, I thank them for the compliment. She was who she was and she didn’t mind being called on it 😉 she was such a good aunt. She was not perfect oh heck no and neither am I. She lived hours away as I was growing up and never missed my dances and other special events. Lol if I had a VCR I’d probably sit there and view the tapes and smile and cry. She loved me unconditionally.

My Dad’s oldest sibling passed recently and it hit me in the face how much he meant to me. Growing up I can remember going to visit at his home that he had with his wife and watching the two of them take care of each other, take care of the church activities and so much more. It seemed like they had everything in my mind. They didn’t. They never had biological children however they raised my Dads youngest siblings as their own. When I was younger, it felt like I was their grandchild. They included my brother and I in a lot of fun things. I’m pretty sure my love of beautiful cards came from Aunt Judy; she never ever missed a birthday or other holidays. They were always signed with beautiful notes. My Uncle Harv took good care of her since she fell ill. They weren’t as active in their lives after, but he never ever forgot the church or loving his family. I never ever left without giving them hugs and kisses. The hugs were when we saw him in the store, or at a family function, or anywhere that we saw him. He would come pray, talk and listen if you were in the hospital. He was just a great soul. They do not make them like that anymore. When the siblings were adopted it gave them a set of grandkids to enjoy. Both his daughter and brother moved back from out of state. I was old enough to understand and young enough to realize how lucky those four cousins were and still are. Those four kids gave him several great grandkids too. We were blessed to have him in our lives for as long as we did. He was such a positive person with huge confidence and faith. I hope I never forget graces at family functions and the tone of his deep voice. At his funeral I learned what a great singer he was and I never knew that or I forgot if I did. I wish I saw him more than I did in the last few years. It really didn’t matter how long it went between visits, but I left it go too long. I don’t know how HD brains forgot some things and remember others. I know his wife and his siblings and the extended family will not be the same without him.

How weird is it that two of the people that I know influenced me the most are my Dad’s siblings and not my Mom’s. I always wondered why I never felt so connected to others in the same way. I’m not saying I couldn’t give you some great memories and or influencing. My family on both sides have been and continue to be influencers.

My Aunt Pat passed a few years ago. She had bravely fought hardships and losses and the cancer took her too soon. My Mom and I were just talking about how I never learned to sew like her. My Mom never realized that I bought my sewing machine so I could learn from her. She was one of the craftiest people. She also loved sunflowers and snowmen. She really loved my son and treated him like she would her own grandkids. Give her any idea and she would work thru to find a solution. I only wish she had been around to see him grow up and continue to spread the creativity :). My Mom shared with me how she learned to be a crocheter and it just went to show her persistence to create and by creating showing beauty. Maybe I would have even learned to bake or cook more if she was around, because my Mom and her used to make the best food, cookies and candy. Yum yum yum! I remember her love for my brother and I. She was important.

I had an uncle that passed away before I was old enough to remember him. My Uncle Laird was an alcoholic and died in a car accident. My Mom used to tell me how he would pat my back as a baby to put me to sleep. So in my mind hearing about that accident really kept me from an extreme amount of alcohol consumption. I owe that partially to her memories. My Dad had a brother that was a Vietnam War Vet and was deeply changed by alcohol, agent orange and what we now know could be attributed to HD. I remember seeing this man stumbling around and middle of the night conspiracy calls when he was drinking. He was a kind guy until the alcohol would whistle his tune. I would get so angry with him for leaving the car in some crazy crazy places. Alcoholic tendencies were seen on both side of the family. I didn’t want to piss away all my hard work because my personality is very addictive. I saw this early on and just stopped drinking. With my later health issues, even a sip usually does me in. Occasionally, I still find enjoyment in the fruity goodness of someone’s drink. My body just doesn’t like it. I did my share of drinking, but for the most part it was after I was 21. I really wanted a new car, new clothes & a house aka a life & family. I knew all of that couldn’t be achieve by me being an alcoholic or social drinker. My inability to drink kind of alienates me from others, because so many of today’s society drink. I often wish that I could just enjoy one with supper or after a hot day too. I guess that makes me fortunate.

I can remember staying an afternoon with my Aunt Jean and we were going thru her highschool memories and looking at her hat & tassle, pictures etc. I decided that day I wanted to be Valedictorian. I had always been book smart. I set myself a life goal. I don’t remember if I shared this with her or not. She wasn’t involved in the best personal relationships and I guess that day I realized that I didn’t want to be stuck in an abusive relationship. She wasn’t strong enough or confident to do anything else at the time. Even though her significant other aka partner wasn’t the best person or Dad he was in her life a long long time. Through watching him and hearing about his life; I knew I would never ever take recreational drugs. I didn’t want to be a statistic. I watched cousins become users and addicts. I watched some get clean and go through so many ups and downs — too many.

To be continued ……

Disclaimer if family or friends are reading this – don’t take it personally if I haven’t mentioned you. I’m sure whoever you are; you have influenced my life in some way or another.

Unhealthy, but eager for faith

Tired and achy, but I love seeing the sunshine and feeling the warmth. I think I am so ready for it full time. I really think that a vacation is much needed.

I’ve been running around from this appointment to that appointment and I have to nap again to get thru the rest of the day. My Dad isn’t driving much. My body just can only take so much and I’m having really bad back spasms. Add in the stupid heavy boot and I’m even more clumsy than before. I have an MRI scheduled for next week. I figured I should get it before my insurance is gone.

Living with these things called diseases and health issues certainly never leaves for a dull moment lol. My blood pressure seems to be staying pretty regular, but there are times that it feels like my heart will pound out of my chest and behind my left ear again. I shiver and it feels like my body starts shaking from the inside out. It is not a comfortable feeling. In several of the online groups I joined, there are a lot of folks talking about almost a feeling of a buildup of energy in certain parts of their bodies. They talk about the restless leg and other limbs that move. I have had so many of these same instances and even with meds it’s there. The early signs have been a part of my life for some time. Lately, I feel like I’m always feeling anxious and aggravated by others around me. Two days ago, I was driving my son into town and he turned on a song with too much going on. My mind couldn’t handle it. I felt like I needed to scream. Even the sound of the cars heater was sounding much too loud. Today, I was helping my Mom with a craft show and it annoyed me to have so many people in my space and the noises ugh just too much. It made me wish that I’d taken something for anxiety, but not sure it would have helped much. I was up too late last night. My mind just runs on and on. I often wake up throughout the night scared for my family and scared not knowing who or how they will take care of my Dad or me. I keep telling my Mom that it’s important that she learns how to help my Dad so she can do the same for me. I’m scared not only because of the eventual decline in health both mentally and physically, but also worrying about wether or not she’s going to be healthy enough. She has some tests for the vomiting and acute diarrhea coming up and recently her thyroid went kaput. They began treating it and provided iron infusions because of low levels again. Poor thing sits down and falls asleep even with just waking up. So, this is why I can’t sleep many nights. My head is too full of too many emotions.

I have continued to attend the Friday night church in Kittanning and continue to find a sense of peacefulness while singing and listening to the gospel. I am still a Christian “in training” because I am still working on my faith and love for God. I know it will probably sound peculiar but, I think I was meant to go there with my brother. I was meant to be questioning my faith at that time in my life. I feel like those pastors are preaching these lessons directly to me. I started going thru all the sermons since January 2019 and forward last night. I especially enjoy listen to the head pastor give a sermon, the music pastor and then listening to the prayers offered from the other pastors. I pray and sing and pray some more. Thanks be to God for the strength and abilities to move forward in my life. I thank God for allowing me to see and hear his words.

I’m hoping I will be able to find a way to work and raise money for HD. I’m thinking if I helped with an HD vendor event or offered some kind of awareness for the community. I may be in a small group, 1 in 30,000, but I feel like I should be doing something. Back in the day, I would have already jumped in to a project. I’m unable to keep my thoughts in line, mind fog is real and my memory sucks. I don’t feel like the old me….the me before illness & HD Heather. I know I never will. My normal just like so many other warriors will never be the same and we are forced to adapt time and time again.

Butt-heads and awareness

So yesterday my son decided to smack a fellow student’s rear on the bus. There is more to the story about previous texts. He said he was dared. Teenage boys that are having rough mornings (he has ADHD & ODD) are very susceptible to other guys issuing the dares. The girl didn’t take it as a joke. He was pulled into the office and I had to pick him up. He is out for a start of 3 days and most likely 5 days.

I grew up with all my friends being boys. I was used to their talk and often forget that I wasn’t one of them. I wasn’t surprised by much. A butt smack wouldn’t have phased me in those days. I can’t say I would react to it unless it was a stranger. Not anymore; people get offended to easily. I’m not saying either outlook is wrong or right, but he definitely be better at keeping his hands to himself. Don’t answer to dares and be a good person making better choices. Jokes are not jokes to everyone. Unfortunately, he has been on thin ice and this doesn’t help. I can only pray he will learn how to make better choices and not become a follower. He just wants people to like him. I still worry that she was upset and outside charges/punishment could be done. Sigh……

Foot update: no fracture seen. Asking insurance for MRI to make sure it is just a bad sprain and contusions. It is still bruising and still quite sore. I can walk a short distance on my heel only. So the skooter & I are still best buddies.

My body is definitely not liking the cold mornings and nonstop running around. I need to take a nap! The sunshine does feel great. I’ve had to learn over the last 15 years or so that experiencing pain 24/7 is a part of my life. I don’t think I will ever see it being pain-free. That’s part of chronic illness and getting through from point A to point B.

I want to make a difference. I want to make people aware of Huntington’s Disease. I want to talk about HD. I can’t walk the organized walk. I can still talk and share information. I really wish that doctors and individuals understood it a bit more. Maybe I can get some information from the HD Education Day this month. I’m looking forward to attending it. I wonder if anyone close to us will be at the day of activities. 1 in 10,000 and 30,000 HD + folks in the USA is rare but it completely destroys lives and families everywhere it’s found. I’m rare and positive and it’s okay. I believe the good Lord will pull through for me.

Looking Ahead

What a beautiful day today as long as you were strapped in; holy cow the winds!! Beautiful sunshine made for a brighter day 🌞

Waking up today was another challenge. I am crashing hard and sleeping hard. I just don’t want to get up. It is probably because I’m not using the sleep apnea machine. Once I get insurance, I will be getting new attachments hopefully that fit.

Yesterday another family member was taken to a local ER and sent into the ICU. She was unresponsive. Thankfully after intubation and some bone aligning she seems to be better. Thank God for holding her in your loving arms – Amen.

I continue to notice that my muscles shaking in one extremity or area results in all my muscles being shakey; inside and out. I’m used to feeling the limb movement at night and the tremors a lot more frequently. However, I’m not use to having a muscle spasm in one place cause all over shaking. It is a bit alarming and emotional. It leaves me exhausted and sore. It sounds like this is the norm for HD families. It is incredibly rough not having anyone earlier in the family to discuss early on-set etc. My Uncle died just before the family was told he had it; my Aunt is 70 and has the disease as well. Its different for her as she was later in life when symptoms were recorded. My Dad also has the disease and has never been treated. He isn’t an open person so asking questions or pushing too much get me nowhere. I don’t even think he notices he is moving his hands around, shaking, stumbling with words or getting “stuck” in an action. It is sad to see the symptom list growing. I only have the Dr once every few months and online to share feelings, ask questions and learn from others.

I often lay awake after vivid dreams and think who will take care of me? Who will ensure that my son understands the disease and if there is ever a cure to make sure at-risk family members are aware. I came across an young person camp to keep him informed and help to understand and cope. He turns 15 this year so hopefully next year he can apply. Its my hope that if he is at-risk or HD + that he isn’t blindsided by symptoms and testing if or when he decides to do it. ADHD and ODD and have given him a handful to deal without a genetic disease. It is my hope that it stops with me. Please hold my son in your grace God. Please give him the necessary time and growth before he is faced with more. Thank you & Amen.

So on to something more interesting….

Yesterday, I knew I was living in the boonies as I cut across country to get to the dentist. I saw a giant hill/field with huge beautiful turkeys standing all puffed out and showing their feathers. In the opposite corner, a small group of deer. None were spooked. The next property or so over had a plowed field full of guineas and in amongst all of the gray and black blacks was an all white. I would like to imagine it is the queen or king of the guinea 🙂 oh and further over a sole working horse pulling a plow around and across the black fertile dirt. It always amazes me to see the animals start to emerge. The cows have calfs and mama bunny is heavy with child. The birds and the groundhogs have returned. Most farmers around us are spending their days or evenings plowing and getting fields ready for hay, corn, soybeans or even pumpkins. Soon they will plan and plant their own gardens. My favorite time of the year is when the first cukes and cherry tomatoes make there to the table. The corn from a local market continue to be fan favorites for our area.

Baseball is back and ends up on our TV most evenings. I miss watching my son play. Some of those boys even as kids had such talent. I’m trying to implement a summer bucket list to help live life to its fullest. We used to go places and enjoy more activities; before I got sick, etc. Things like kayaking, photo ops, Pirates games, geocaching, Sunday Fundays, fishing, and swimming just naming a few. We hope to take the camper out too if I’m able to use the steps. It is almost camping & campfire 🔥time. We are supposed to have a couple of nice days this weekend and I hope to talk the guys into a topless jaunt in the Jeep. I love those days. Blaring music and sunshine. The county is also having some kind if scavenger hunt that they may try.

So now that I am excited for summer and no school for the boy; I’m off to update my list. What do you like to do?

Faith, Hope and Bubblewrap

Wow 2019 has come in like a wrecking ball straight up from 2017 & 2018.

As I mentioned the passing of a loved one and the diseases that we watch others suffer with and in oneself just really was rough spiritually for me. I have continued to work through that by attending church each Friday night and reading the Bible. I don’t remember much of what I learned in Sunday school and along the older years, but there really isn’t much that I remember from a lot of stuff these days and it is getting worse. I pray everyday to have the strength and the abilities to survive yet another day. I pray everyday that these babies with such life altering cancers are healed. I pray for all of my fellow HD+, JHD, and at-risk individuals everyday sometimes more than once. I just feel like I need to be saved all over again and start knowing his word to be “right” with my life. I feel like I am at peace only when I’m there singing with those around me and listening to the sermons leading up to Easter. I also have been utilizing a daily scripture email and saving those that mean a lot. I had a moment at the church the first time I went with just my brother during the closing songs and prayer. I felt like I was hugged and comforted. I will continue to go when I can. My husband is not a fan of the more modern approaches to religion and would rather not go at all, but if he did he wants to go to the same church he grew up with. I enjoy going to both.

Living with chronic illnesses has continued to be a challenge. My migraines have definitely gotten better thanks to the preventative meds that I now take ! That’s a big thank you right there. Not sure how I will do not having the Rx once my insurance gets cancelled.

The fibromyalgia continues to be an issue. I often wonder if so many of the early problems since my son was born relate to the HD and not just fibromyalgia. A lot of pain, fatigue and spasms these days. My husband is losing his job so I had to start wheaning myself (with Drs assistance) off Gabapentin. According to the Rheumatologist, the dosage I was on is usually not prescribed to fibromyalgia patients. I have been on this dosage for a long time. Just stopping it can cause severe issues with my health and stopping taking it even over a course of time it has been a challenge dealing with constant pain again these last few days. Once I get insurance again it is my understanding that I will be back on it, but not as high of a dose. He told me that it can greatly affect the brain at that dosage and in the back of my mind I thought to myself “HD is already doing that”. I get sorry for myself a bit that day, but quickly got out of that mindset.

I fell again. Its been over a week and my foot still has black spots and new bruises daily. I’m in one of the boots that has air to comfort the ankle. Could I have one of those for my whole body ?? Think it would work as bubble wrap? I’m allowed to bear weight as long as the pain is tolerable. My pain is not tolerable. My toes hurt real bad. New x-rays later this week to see if any new fractures appear.

Between the boot and skooter and the pain from my body and muscles shaking etc from stopping meds it has been a rough few days. I’m still driving myself because no one else can. I was bone tired yesterday.

I have not minded not having many close friends or family. Being sick with chronic illnesses and only being a year out from breast cancer have left me often feeling alone. It would be so helpful to have someone that lived close enough to make plans with or to ask to take me somewhere. My Mom would do it in a heartbeat and she doesn’t drive.

Since my son was born I have had to rely heavily on my parents and in-laws. They are in there 60’s and 70’s now and we always think they will be here forever. Having the love one pass away was an eye opener and then less than a week later my father-in-law was in pretty bad shape medically. My husband is an only child and very close to his Dad. He is feeling better and driving again, but I know relying on him to get me to my neurology appointments may not work. I don’t like being a burden. I also do not know how to find anyone else to do it.

Some more good news – my tests done as cancer screening in the last few weeks is all clear with no sign of disease!! One Year Down

So many changes & challenges and life still goes on. Laundry never stops. Food still needs made or ordered. Teenagers still need dealt with. Bubblewrap is always appreciated along with prayers. Fight hard mighty chronic warriors and continue to look at the positive (I’m still learning). HD researchers are making headway and this ugly disease will someday be wiped out.