Ball and Chain

I am feeling sorry for myself again. The dreams he had and the dreams we both had are no longer realistic. Multiple Sclerosis has changed our lives and our dreams. Those dreams are my ball and chain.

Hubby began composing, playing guitar and singing since he was sixteen years old. He was the lead in two bands. In 1969, they were excited about auditioning with a music executive in the Catskills. It was not meant to be. They were returning home from a gig and were about fifteen miles from home when a drunk driver (a doctor) hit them head-on. Hubby’s friend, Chris, died. Hubby was injured. The band dissolved after that. That doctor later died in prison. This happened one week before Woodstock. The surviving members decided to catch that “free concert” in Woodstock. They left notes for their parents since they were all sixteen years old at the time. They managed to drive half-way there when someone yelled out, “the New York Thru-way’s closed, Man”. They returned home, their parents none the wiser.

Over the years, Hubby continued to compose and play and even front a new band. He left for college in 1970, received his degree and eventually began working at Grumman. We dated briefly long distance in 1976, but he chose to marry the local girl. Months later, I met the man who would become my first husband and the father of my wonderful son.

My first husband died in 1992. I reconnected with my first love in 2009. Again, we were long distance. We would fly back and forth and video chat every day, twice a day. When I was sick, he serenaded me. We connected on a different level as older folks. He had finally settled down and I grew into myself. I became a stronger woman. Funny thing is, I was so angry over the death of Roger. I was angry for years. Hubby was angry over his marriage ending after so many years together. Once we reconnected, I was so happy! He told me one day that his kids said he was a little less angry. I told him he was a LOT less angry. He laughed.

We went through Pop’s death and Hubby’s cancer together and long distance. Our relationship became that nice, warm blanket. We were so much in love (if we ever fell out of love), but felt as if we had always been together.

We married in 2016. In 2018, symptoms began which we initially blamed on age. A few months later, Doc asked him to walk for him. He then immediately set us up with an MS specialist and ordered a brain MRI. The lumbar puncture didn’t come until November 2020 due to Covid and a little denial. Just after Christmas 2020, MS was confirmed. In the span of two years he has gone from walking unaided to using a walking stick, rollator, manual wheelchair and now a power wheelchair. He can no longer transfer unassisted.

His hands have no fine touch and balancing food on a fork is difficult. Sometimes I need to cut his food for him. He cannot sit upright. I thank God he has his mind, though he sometimes has cog fog.

His method of composing was to play a tune on the guitar, with the lyrics coming later. It seems he has a few songs in his head, but we have not yet figured out how to adapt so he can compose. Writing things down is another painful issue.

I know I need to let go of the dreams we had just four years ago. We need to discover new dreams. Life has changed on a dime. It’s not fair to either of us, but I need to let go of what I believed our life together should have been. Until I do, that ball and chain will just drag me down and make us both miserable. I love him so much.

Here’s to better days, but Multiple Sclerosis is still evil.

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My Heart is Tired

I have not had a break in more than a year now. I do not see that happening any time soon. My incredible stepchildren will not have time off until the summer and they would have to see their Dad naked.

I would love to see my family. We have a wheelchair van now, but my old house is not accessible. The hallways are very narrow and he would not be able to turn into the bedroom. My mother’s house has two sets of stairs. There is no ramp. I really do not know how we could get him into the house.

My uncle died recently. Now my cousin is dying. She’s eleven months older and her cancer has spread. She is at peace with it. Her faith is amazing. She was my first best friend since my first sister had not yet been born. She was a nurse. She married her great love and recently lost him.

Mom is now ninety years old. She’s healthy and my sister and son take care of her local needs. Her neighbor ran over during a bad storm when the power went out to make sure she was okay. I miss my family. I love them all. I see the ladies on Zoom once a week. My son has to get up very early for work, so he’s not always able to join us.

I am recovering from a foot injury. I dropped the transfer board on the top of my right foot. There were no fractures, but I have bursitis, arthritis and a bone bruise. I was allowed to discontinue wearing the boot!

My morning begins by setting things up for Hubby. When he awakens, I wash him up in the bed, dress him and position him so we can use the transfer board to get him into his power wheelchair. At that point, I can have a cup of coffee and get on the computer. It is 10 a.m. and I already feel the need for a nap, but I have breakfast to prepare and laundry to do. The laundry area, of course, is in the cellar.

I mostly do only necessary work around the house. Dusting is not one of those things. It is spider season, so I need to vacuum them and their constant webs off the ceiling. I have the den to straighten up as well as our one guest room.

I will drive eight miles to the pharmacy today and also go to the bank. Perhaps I’ll see more wildlife along the way. As I was returning from my mother-in-law’s house on Tuesday, I had to stop to allow two turkeys to cross the road. The hen crossed first and the male decided to run after her. Only in a small town?

It is time to resume my tasks for the day. I love my husband beyond measure, but I am tired. I miss him. I cannot imagine how I will be doing this ten years from now, but then again I do not know what Multiple Sclerosis will do to him in the years coming. We were told that MS does not kill yet I know of people who have died from the ravages of this disease. It scares me. He is in pain most of the time but rarely complains. God, please help him.

World is Spinning

It’s been a week.

We finally bought a wheelchair van. It was running great. Last week, the battery light came on while we were driving. I managed to get Hubby home and drive his Mom home. Mechanic said bring it in on the 29th, then offered to squeeze us in yesterday.

I jumped the van but when I removed the cables, the van knocked off. After much finagling, it was towed to our mechanic. No word yet on the problem, but it’s probably the alternator. It’s under warranty, thankfully.

My sister had knee replacement today. That has been on my mind a bit since I live so far away. She will stay overnight at the hospital. She’ll finally be free from the pain she’s lived with for about 20 years.

Youngest sister’s kitty had to go to the vet. He’s been given a year to live. He’s only five. She’s helping with our sister. She lives away from family as well, so her husband (greatest of all time) is taking care of kitty.

Hubby is doing well. He awakened me during the night several times when his legs went into spasm or he needed to turn to the opposite side. I’m constantly exhausted. It’s not his fault. I finally fell back asleep and a bloomin’ woodpecker decided our house made for a good breakfast.

There’s so much to do and I have no car. I can always borrow my brother-in-law’s diesel truck (love it). It would get me to the dump and to my mother-in-law’s house so her lawn can be mowed.

Some days I just do not know where to start. There are the endless telephone calls, cleaning, trying to organize… I need a break. Stop the world, I want to get off.

Feeling a Bit Lost Lately

If you follow here, you know that my husband was diagnosed with Primary Progressive Multiple Sclerosis in December 2020 after 2 years of symptoms that could be brushed off as just getting older.

Here is what PPMS means for us. It is not necessarily the same path for others with the same diagnosis.

At Christmas in 2018, his balance issues began. He began using a cane for balance, especially outdoors. At times he appeared drunk and our joke was that he would not pass a field sobriety test. When he saw his PCP about the nagging back pain, Doc asked him to walk for him. His left foot was dragging. Doc ordered an MRI of the brain and a consult with a neurologist who specializes in MS. Hubby had been tested for Lyme and other more likely culprits. When those results were negative, it was time to consider a zebra rather than a horse.

COVID-19 slowed the process quite a bit. We live away from hubs where certain types of care are more easily accessible. It took a while before the vaccine arrived where we live and a bit longer to get an appointment. This was necessary before he could get a lumbar puncture which was scheduled in November 2020.

He went from using the cane, to a rollator, to a borrowed manual wheelchair and is now in a power wheelchair. He can no longer transfer on his own, which is difficult. From cane to manual wheelchair happened in about six months. He’s been in the power wheelchair for about two or three months. It’s helped him get outdoors.

Our day begins when I dress him while he’s still in bed. His left leg does not function, so it’s like dressing a 200 pound mannequin . He’s in pain every single day. After his pants are on, I position him on the bed with his legs over the edge and bring him upright so his shirt can be put on. I then get the wheelchair close to the bed and using a transfer board, I get him into the wheelchair. For now, he gets sponge baths until we figure out how to safely transfer him to the shower chair.

I then fix his coffee and juice so he can take his medications. Because his hands lack fine touch and also due to pain, I now fill his medication containers for the week.

At times he needs help with toileting. His brain does not give him enough time to transfer to a toilet chair in time, thus the urinals.

Holding a cup is sketchy for him now. At times I have to cut his food for him. I try to trim his mustache. He needs a haircut. It’s very long now and it needs washing. I pay attention to cleaning his feet.

At bedtime, I get him transferred into bed and undress him and give him a quick wash. He can’t roll to his right on his own, so I roll him over. He can roll to his left with minimal difficulty. Sometimes during the night, his body contorts due to spasms. He tries not to awaken me. I made him promise to wake me if he needs help and not to suffer in silence.

I stay up a little later than he does and watch mindless television just for the me time.

My heart is breaking. It seems he is slowly disappearing. He has his mind. His jobs are to order groceries online, do the bills and menu planning. I see his abilities disappearing. I don’t treat him any differently. We crack jokes and have an occasional breakfast out and have returned to in-person worship.

He’ll be 70 in the fall. I am afraid of losing him. I love him.

Grieving

My uncle died yesterday. Mom has now lost her two youngest brothers. Uncle John was 86 and recently diagnosed with stage 4 cancer. It progressed rapidly.

He was the last of his siblings to marry. He was fun. He stuck to Chevy Impalas most of his life, mostly the convertibles. When I was about 6 or 7, I was riding the train to Franklin with my grandma. He drove his Impala along side the train as far as he was able and it seemed as if he was racing the train. He was a conductor with a commercial rail company.

Mom told me the story of Uncle John being distracted by a young lady with nice legs while he was driving. Had he not been distracted, he would not have run into the back of the garbage truck with his brand new convertible.

When I was 9, he married my Aunt Katherine. They had recently celebrated 58 years of marriage. Seems like just yesterday.

I called Aunt Kap yesterday. She was holding up fairly well. This was a few hours before Uncle John passed. I then called Mom. She said, “not this one”. Mom turned 90 the day before. She is the eldest and has one surviving brother who is not in good health. I wish I could hug her right now. She’s 500 miles away. If we can get Hubby into her house, his chair is 400 pounds and I fear it would tear up her house. She has carpet.

I miss my family. This is a time when we would all come together in grief and share family stories. I have a few of Uncle John. He put my son on a slide. There was a puddle at the bottom. He got so dirty and I cried tears of joy because that child did not like getting dirty. He was about 3.

Uncle John picked up Mom for a doctor’s appointment once. By then he had a truck. Mom is a tad over 5 feet tall. He laughed when she couldn’t get in and offered to get Kap’s sedan instead. Why do I think he knew this would happen??

Years ago, Mom was scrubbing the kitchen floor. Her brothers waited until she had finished it and then came in before the floor was dry. She took the string mop and slapped all three of them across the face with that dirty, wet mop. I think that’s one of my favorite stories.

I asked Kap to tell him I love him. I know she did.

I’ll miss him so much. He’s now with his parents and brothers, safe in the arms of Jesus.

RIP Uncle John. 1936-2022.

Weekend of Celebration

Tomorrow, Hubby’s Mom turns 90. There is a party at his niece’s house today. This will be his first time at her house in 3 or 4 years. There is no access to the inside of the house but her deck is ground level. He’s excited to be with family for a celebration again.

Tomorrow, we’ll have Mama G over for a simple dinner and dessert. She’s doing great since her cataract surgeries. I’m excited for her. She’s doing so well, although she laments she has more wrinkles than her older sister. She’s fun to be around. Since Mom is so far away, Mama G’s company helps me.

My Mom turns 90 in about two weeks. I just can’t believe it. I miss her so much. Zoom meetings are great but no substitute.

We also have prayer requests. Mom’s youngest surviving brother had a PET scan yesterday and is awaiting results. He’s 86. My cousin had a PET scan earlier in the week, but ended up falling yesterday and will have surgery today to repair her fractured jaw.

I feel so helpless being so far away. The best thing I can do is pray and let Mom and my cousins know I am praying and holding them close.

Today, I will concentrate on the celebration for Mama G.

A Bit of Hope

Hubby had a neurology appointment today. His last “visit” was the video call which did not come through clearly. Since that call, he has had the lumbar puncture, diagnosis of MS and his first infusion.

Today, Hubby explained how he’s been feeling since the infusion. We had a list this time. He now has a prescription that should help with the spasticity; what we refer to as rigor. He should be able to sleep better at night and the muscles that are strained so badly when he rigors will have a chance to heal.

He could not lift his bad leg, but Doc could see the muscle trying to work. Doc was very encouraged. Hubby is on track this early into treatment and he seemed excited how much better he’ll feel after the second infusion near Thanksgiving.

Hubby is tired now. The weather heated up in the afternoon, but he felt good. Doc told him to keep his positive attitude. He’ll see us again after the next infusion.

This has been a huge load off our shoulders. We realize there are no guarantees. We’ve had a rough week. Doc had a twinkle in his eye that made us feel we’re on the right track.

An added bonus came from my stepkids and daughter-in-law. They took turns caring for Hubby while I flew home to finally see my family for the first time in three years. Mom just turned 89 a few days before. My son’s birthday is next month. Two siblings were diagnosed with cancer during that time and are fine now. My youngest sister and her family I had not seen in four years. I left a document for the kids here so they knew what to expect. They did well. I think Hubby missed his usual routine. I may not have rested while I was away but I saw my family and that was such a blessing.

Here’s to a bit of hope.

Sad

I am sad today for many reasons.

My son has a milestone birthday next month. I bought him a nice present and planned to mail it in about three weeks. It’s another birthday I am missing because hubby is unable to travel due to his health. I feel as if I’m letting my son down. He did give me the green light to remarry and move away but I thought I’d be able to visit at least twice a year.

Hubby has an undiagnosed illness. For two years the doctors have suspected he has late onset multiple sclerosis. At his last exam he could not command his leg to lift. The neurologist said, “MS does not act like that!”. The MRI reports to my untrained eye show impingement of nerves in his neck and lower spine. Either of these could explain his symptoms. He cannot walk. He has borrowed a wheelchair so he can maneuver about the house without my assistance. It seems to help. His next appointment is September 2nd. In the interim we’ve been told no news is good news. I disagree. I see a difference between the previous MRIs and the most recent. We should have received a call regardless.

I had hoped hubby would have a diagnosis and/or treatment so I could go home for a visit. It’s been more than two years now since I’ve seen my family and I have not seen my youngest sister in three years. The plan would have been for hubby to stay with his daughter so I could visit if he could not go with me. Her new house is on one level and one guest room has it’s own bathroom.

It seems now my son may not be home for his birthday. He works long hours and occasionally is called to travel. I miss him so much. I feel as though I’ve let him down too many times since his dad died. I have a bad case of Mom guilt. He was only eleven when his dad died. I was 37. I did my best but I often wonder if that was enough.

I’ll feel better later. I’m so frustrated not being able to see my family and not having answers for hubby. Today I am just sad.

Grieving

We had a lovely time at Christmas and I was able to get to church for the pageant. It lifted my spirits. We had fun with the little ones and I was able to speak to my family back home.

Since Christmas hubby has had his first gel injection for his knee. He will have two more soon. It should help lessen the pain so he can walk again. He also had his repeat MRIs of his neck and brain. When we saw his PCP today he had the report. There are no new lesions but Doc said it looks like MS and be prepared in case the neurologist wants to do a lumbar puncture.

It’s starting to sink in for us both. I have had moments when I just want to blubber. I haven’t yet. I believe I’m grieving. I’ve grieved many deaths but this is different. I’m grieving the fun we were having early in our young marriage. He hasn’t been to his Mom’s house since early October. We don’t go out to eat or take advantage of the small town happenings. I don’t want to go alone.

I haven’t seen my family in 19 months. Mom calls. I miss my family. I am so tired but it’s more emotional than physical. I have no problem falling asleep at night. I’m not rising early lately. One morning I slept until 9:45 a.m. That never happened before.

I’m also apprehensive. I don’t know what to expect. I imagine the neurologist will give us some resources. First we need to know what type of MS it is after the official diagnosis. Hopefully there is treatment. He’s 67 and there’s not a lot of information online about those diagnosed after age 50. We’re on the easternmost part of the island and the closest support group is more than an hour away by interstate. It’s a 30 minute drive to get to the interstate.

Do I need to get a walker? Will we need a handicap ramp? We’ll need to remodel the bathroom to have a step-in shower with safety rails rather than a tub. If a wheelchair is in the future I’ll need to measure for the proper width to get in and out of the house. My head is spinning.

I’ve loved this man since I was 21 years old. We had a gap of more than 30 years before we reconnected. I’m not leaving him. That’s not in my DNA.

I’m hopeful the knee will improve enough that we can drive south to see family. We just can’t make plans.

I miss my husband being healthy and having fun together. I miss my family and don’t know when I’ll be able to see them again. I have no one here to help unless someone from church can when I need the extra hand.

In the meantime we await answers. Still.

Tears of Frustration

Let me begin with a blessing. Hubby’s ring (from 2016) was scratched and turning yellow. We were not aware that white gold discolors nor did we know it contains nickel. I am sensitive to nickel. The jeweler we used up here moved another 90 minutes away. I tried the local jeweler prepared for an outrageous price to fix it. It was very reasonable. He was going to “the City” the next day and would have it ready in two days. It looks wonderful and hubby loves it. I will get my rings done after Christmas when this jeweler has his rhodium permit and can do it in town.

Mom called. My childhood friend who had a serious medical issue months ago is still unable to keep food down and has lost a great deal of weight. Mom said it doesn’t look good. It tears me apart. My other friend who has been undiagnosed for years is now in a hospital back home. She fell. Her memory is affected. She didn’t know how to open a candy bar. Still no diagnosis. Am I frustrated with the medical community? You bet!

Hubby saw the neurologist. I said he was house bound and Doc seemed surprised. I said, “HE CAN’T WALK MORE THAN 50 FEET!”. He recommended PT again but in his office. That would be a 30 minute drive each way twice a week plus $90 per week. He’s had four MRI’s, two EMG’s, multiple labs and several specialist appointments. It has added up and hubby worries about going down another rabbit hole. We will get him scheduled for another brain MRI and one of his neck the first week of January. This will hopefully tell the doctor whether this is Multiple Sclerosis or another complication of the cancer he had in 2012. His pain is as high as a 9/10 daily. Walking is taxing and he can’t help me with anything. I’ve done it all most of this year and I still can’t see my family in the foreseeable future.

I want to scream. I want to cry. I have medication in case I need it on rough days. PCP said my slight weight loss was probably stress. Honey, when I’m stressed I eat anything not nailed down. It was 5 pounds in 4 months, so no biggie. We’ll probably not go to his niece’s for Thanksgiving. It’s too much. When we returned from the doctor appointment last week he couldn’t lift his leg to get up two steps into the house.

My hometown has the nickname of Ptown. Some areas of town are a bit rough, so when I threaten to go full blown Ptown it means I’m very angry and have had enough. I feel I’m going to yell at doctors. It’s been two years. We need to know what’s going on. My patience meter broke 18 months ago. I have a very low tolerance for BS.

I’m not depressed but I’m careful to watch that it doesn’t sneak up on me.

I’m mostly letting off steam but I’m so tired of this merry-go-round.