Call Me Grumpy

It’s now been more than three weeks since I was attacked by Hubby’s transfer board. I’m about done with the boot. It’s heavy. It’s uncomfortable.

The first x-ray showed an avulsion fracture of my right foot. The orthopedist said the second x-rays (two weeks later) showed no signs of a healing fracture. I just had an MRI. The first appointment (per staff it’s supposed to be within three days) after MRI is not until October 4th. I am not willing to drive an hour by myself to an area I barely know. The other choice was even farther out and I have never been there. The closest office is a 30 minute drive. Yes, I have a GPS. Imagine having to drive without the boot for an hour or just over an hour while operating an accelerator and a brake in heavy traffic. Wow, that would help me so much, would it not?

So, I’m grumpy. I am trying to do all the caregiver activities, take care of the house as best I can and cook. I want to nap constantly.

Luckily, Hubby is in a fairly good place right now and somewhat stable. I switched up the bed this morning so our heads will be at the bottom of the bed. This should make things easier for him to get off his left side and perhaps make getting in and out of bed easier. He cannot do that alone, of course.

I suppose I should end this and begin dinner. This boot will be history before long. I have had it on since about 8 this morning. It’s now 5 p.m.

Perhaps my results will become available online before the end of the weekend. In the meantime, I am grumpy and tired and in a lot of discomfort.

That is all. Carry on.

Not Fun Any More

Did anyone tell you caregiving can be hazardous to your health? It is. It’s not just the emotional toll. Things can turn on a dime.

I was attacked by a Beesy Board, which is a transfer board with a sliding disk. I was moving it and it slipped from my hands and landed on top of my right foot.

I called my PCP’s office the next morning. It wasn’t bruised, but it was puffy and was uncomfortable when I flexed my foot to walk normally.

The next morning I was seen by an orthopedic surgeon. He explained that women of my age (old) may not have a fracture show up on x-ray for two weeks. He put me in a boot and I am returning in two weeks for more x-rays. It feels more like a slight fracture than a bad contusion to me.

The boot was amusing for day one. I have worn it since early this morning. It’s heavy. It rocks like a walking shoe does. It’s hot. I finally took it off around 5 pm. My sock was damp from wearing the boot all day. It’s nice to have my foot free to air out. I look forward to getting the new x-rays and seeing if it is indeed a fracture. If it is and he switches from boot to cast, I’ll see if I can get an orange cast for Multiple Sclerosis. Yes, I am weird.

I haven’t had a fracture since 1986, the year the surgeon was born.

It’s been just over 24 hours of wearing this boot, but I can say it is no longer fun. This too shall pass. I am ambulatory. I can remove it when I am driving. I do not have to sleep with it on. Silver linings.

Too Much Scary Information

I try not to Google too much, but tonight I was curious about Hubby’s MS progression. He was diagnosed at age 68 and will be 70 in the fall. Here’s the disability chart I found on Healthline:

According to Healthline:

0No disability.
1Minimal symptoms impacting one functional system, but no disability.
1.5Minimal symptoms impacting more than one function system, but no disability.
2Minimal disability symptoms in at least one functional system.
2.5Mild disability symptoms in one functional system or minimal disability in two functional systems.
3Moderate disability symptoms in one functional system, or mild disability in three or four functional systems. No difficulty walking.
3.5Moderate disability in one functional system and more than minimal disability in several others. No difficulty walking.
4Significant disability but able to perform self-care activities and live independently. Able to walk without assistance or rest for at least 500 meters (1,640 feet).
4.5Significant disability and some limits to the ability to perform daily tasks. Still able to work and independently do most activities. Able to walk without assistance or rest for at least 300 meters (984 feet).
5Disability is significant enough that daily activities are impacted. Might need assistance to work or perform self-care. Able to walk with assistance or aid for at least 200 meters (656 feet).
5.5Disability is significant enough that self-care and other daily activities might not be possible. Able to walk without assistance or rest for at least 100 meters (328 feet).
6Need a walking aid but can walk 100 meters (328 feet) without resting.
6.5Needs two walking aids but can walk 20 meters (66 feet) without resting.
7Uses wheelchair exclusively but able to transfer self in and out of the wheelchair. Able to use a wheelchair independently. No longer able to walk more than 5 meters (16 feet) even with aid.
7.5Might need help transferring in and out of the wheelchair. Might require a motorized wheelchair. Unable to walk more than a few steps.
8Needs assistance to use a wheelchair. Still able to use arms and perform some self-care.
8.5Restricted to bed for most of the day. Still has some use of arms for self-care.
9Unable to leave bed. Able to communicate and eat.
9.5Unable to leave bed. Completely dependent and unable to communicate. Cannot eat or swallow independently.
10Death from MS.

According to this chart and my untrained brain, He’s now at an 8. He has his upper body to maneuver, eat (sometimes with assistance), comb his hair and brush his teeth.

Needless to say, this scares the crap out of me. I preach that it’s one day at a time and to breathe, but this is difficult to do. In bed, he feels paralyzed because he can’t roll from side to side or move his legs and feet. It’s a scary thing for us both. He has brain fog if he stays up too late or becomes overheated.

My first husband died suddenly just before his 41st birthday. I met current Hubby in 1976 before I met my first husband. In 2009, we reconnected (still long-distance). MS invaded our lives officially in December 2020. His symptoms began in 2018. I love him more than I can express. This is difficult.

I try to keep his dignity intact as much as is possible. He’s always been Mr. Fix-it, independent and very proud. He is also a very kind soul. If he is in the wrong, he will apologize. He thanks me for helping him. He compliments my cooking. For people who know me, that is HUGE! I used to rock the microwave. Now I actually cook. I suppose I only needed to retire and become a full time caregiver for that to happen.

We are approaching our expiration dates at this point. We’re retired and I am only two years younger. I am scared. I like information because I want to prepare myself mentally. Should he progress further, bed bound will be next. I cannot allow myself to go there. The Ocrevus is supposed to delay or stop progression. In January of this year, he transferred himself to the manual wheelchair and met me in the kitchen and sometimes made his own coffee…January of this year.

Please, Lord. Help me.

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.

Being Thankful in the Midst of Uncertainty

Hubby and I were married in 2016, 40 years after we first met. He was my first love, but long distance dating was very challenging without internet and free long distance. We relied on the occasional call and letters. It ended after six months.

In late 2018 he began experiencing symptoms that could have easily been passed off as “old age”. He had knee pain and back pain. We had cleaned three sheds at his Mom’s house, cleaned our shed and he fixed the lawn tractor. His doctor could not find a reason for the back pain which was his main complaint. He doesn’t complain about pain often. Doc knew this. Doc had a light bulb moment and asked Hubby to walk for him. He was dragging his left foot. Doc immediately ordered a brain MRI and a consult with an MS neurologist. This began our MS journey.

He’s progressed from using a cane to using a wheeled walker, then a manual wheelchair (borrowed) to now a power wheelchair which gets him most places he needs to go. We recently bought a 2008 wheelchair van to get him to appointments and out into the real world for the pure joy of getting out of the house. We’ve been to a parade, his Mom’s house, church with breakfast out afterward and just tooling around.

My first husband died just before his 41st birthday. Our son was 11 years old. I vowed to never date again. After 17 years, my son mentioned Facebook. I didn’t even know what it was. I joined and eventually came across Hubby. We again dated long distance and I flew up a few months later to see if this was real or merely fond memories. It was real. As he took me to the airport, he had tears in his eyes and said, “I love you. I do.” I cried most of the flight home.

We have now been married six years. MS throws us a curve ball some days. The heat makes things worse. He has brain fog nearly every single day. I thank God he has his mind. He’s somewhat stable and is doing well on his DMT. His neurologist was very pleased with his test results (no change in lesions) and that he has signals in his left leg (the one he’s unable to move). We’re thankful for what we have. Do I get grumpy? Yes. Does he? Oh, mercy, yes. Each day is a gift. We must remain mindful of that.

I say this as my Uncle John is seriously ill. He’s 86 and Mom’s youngest surviving brother. I live so far away. Traveling that far is something we’ve not yet tried.

One day at a time.

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.

On the Road Again!

We bought a 14 year old Odyssey last week. It has the leaning feature to lower the van on the ramp side. Not a lot of bells and whistles but it’s a game changer.

His appointments are now set. We could not rely on insurance transportation.

We attended a parade yesterday for the first time in 3 years. He went to his mom’s house for the first time in 2 years. He’s so excited about getting out and about now. It’s been so long.

I feel I have my husband back. MS is obviously still in our lives but we can get him out and we can enjoy life as a couple again!

#MultipleSclerosis

MS Is Expensive

Due to our location, any durable medical equipment is out of pocket. We have been approved for a loan for a wheelchair accessible van. It’s not inexpensive for an ’08 but we can get him back on schedule for his treatments. He is one month behind and we don’t want his disease to progress further. Using transportation through our insurance was useless. They did not show two weeks straight and that was with a week’s notice.

We’ll consolidate bills as well so we can also have the deck repaired. The power wheelchair he bought from eBay is working well for him. He can venture out into the yard now. The van will take us to a new level.

On the upside, our neighbor put up a fence and helped clear a lot of brush as well as clearing other debris. It looks so much better. I’ve worked so hard and I’m exhausted but it looks so much better.

We don’t qualify for help for household repairs so Mr. Budget is working on that. It’s his super power.

God’s with us.