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.

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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.

Mixed Bag

Oy!

Hubby is improving. It’s been nearly four months since his first infusion. The tingling in his arms has reduced and is now from the wrist to fingertips. Next infusion is just before Thanksgiving.

I had my caregiver break courtesy of my step kids. I had six days home to see family after three years. I rested one day while I was there.

I have requested medication for the stress from Doc. Yesterday I had severe anxiety. I just don’t fully relax even though he’s doing well.

We’re getting estimates for an accessible bathroom so Hubby can roll right in. We also need new windows. Most of the decisions will be on me for the bathroom. I’ll have a 30 mile drive to their showroom and I’ll take pictures so we can make most decisions together.

This girl is overwhelmed. Being an MS caregiver is tough enough without any extras on my mind.

One day at a time. Adjust. Adapt. Breathe.

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.

Weary

I’ve been feeling a bit weary of late. I believe it’s the accumulation of a pandemic, missing my family and grieving what hubby and I had in the first half of our marriage. We’ve now been married four years and we’re “elderly” according to the medical folks.

When we married, I left my home state and traveled far from my family. I miss them tremendously.

We had a rule early on. One person cooks and the other cleans the mess. It was fun. He loved to cook. I do not. I now do everything.

We used to attend free summer concerts in town, parades and festivals. Sometimes we would go to one of the many beaches and do a little clamming. We sailed or at least spent time on the boat relaxing. We visited his Mom once a week. We also attended holiday dinners with family. We traveled so I could see family. I’ve been home twice in three years. When hubby went home with me in 2018 he was in constant pain and apologized to Mom. She understood. She said Pop was in constant pain. We still do not have a diagnosis. He could walk back then. Hubby is now barely mobile so his big outing is sitting on the deck or seeing a doctor.

I do not regret marrying him. I love him and will do whatever I am capable of doing to help him. I have offered to cut his hair and/or trim the beard enough so it can be shaved but he has this fear of me holding something sharp so close to his carotid arteries. Can’t imagine why.

We make the effort to find something humorous in all this. Some days are more successful than others. One thing that is evident to anyone who sees us (from a safe distance) is that we are committed to one another and our love is forever.

He does not always ask for help when he needs it because he does not want to be a burden. I do not mind most days. Sometimes I’m just tired. I’m the one getting medical help now. It’s minor and something I inherited from Pop so I’m getting it taken care of. We’re both due for routine appointments in July. Our doctor left the big hospital affiliation. The best part of that is he’ll be 3 miles away instead of 17.

I’m grieving what Multiple Sclerosis or whatever it is is doing to him and to us. Once we have a proper diagnosis I can gather resources and see about how to properly modify the bathroom or have the town build a handicap ramp. I have forms for the doctor to fill out but we need the diagnosis.

We still wait. Psalm 46: Be still and KNOW I am God. God truly knows my patience meter shattered more than a year ago. Praying for answers.

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.

Feeling Down

I should be happy. My sister came through an unexpected surgery today for another post cancer complication. Hubby’s birthday was yesterday and we had a visit today from his little grandson. His daughter brought a small cake.

After the visit Hubby was down probably because he had to hold onto the wall as he went to the bathroom. We have two more weeks before his neuro appointment. He doesn’t want more tests. He just wants to walk. He doesn’t want a more sturdy cane or walker unless he has no other option.

This hurts me. I can’t help my husband. I wasn’t there for my sister. I miss my family. I pray daily. It’s been two years of no answers. I’m not a patient person so by now I should be on my way to sainthood.

I see the doctor Monday. Everything will probably just spill out.

I just feel helpless. I should be happy.

Feeling Lost in the Desert and Wishing It Was Dessert

It seems the other medical issue that could also explain Hubby’s symptoms is not in play. It looks like we’re back to the possibility of MS and his next neurology appointment is the week before Thanksgiving. If a test is recommended or ordered, we will insist that it be done soon. We are now at two years of not knowing what’s wrong.

Since February of this year I do nearly everything. He does the bills and he will struggle to the kitchen for another cup of coffee so as not to ask me to do it. I buy pods so he can do it himself since his hands tingle and he can’t trust his grip.

I think I’m afraid of the unknown. I’m so tired of not knowing what this is. He feels the same. We’ve made a commitment to be totally honest in how we feel. I know he hates not being able to help. Sometimes I need to cry and I’ve avoided doing it in front of him. I won’t do that any longer. I’ll cry when I need to.

We’ve been married just under 3 1/2 years. Most of our married life has been dealing with this. We no longer go to his hometown to tour a tall ship, attend parades, attend summer concerts on the lawn. We didn’t even make it next door when our neighbor had his end of summer party. I go to the bank, the store and church. I try to get him to his Mom’s once a week. Otherwise, we go out for doctor appointments. That’s our new normal.

He wonders if a wheelchair is in his future and frets it’s something else for me to deal with. I say we wait and see what the diagnosis is and what the specialist recommends.

I last saw my family in mid-July 2018. Mom is 87 years old. Two siblings are dealing with “early” cancer. I miss my son.

I don’t have friends here. I don’t get out. I’ll chat with ladies at church when I am able to go but I don’t have friends. I just feel so alone and isolated. I love my husband. I love my family. I pray and ask others to pray for us. Just seems like an endless journey and we don’t even know what the destination is.

Feeling so lost and alone but not quite depressed. Discouraged.

Betwixt and Between

Still a rough year. Still no diagnosis. Neurologist says it’s probably multiple sclerosis. Husband is not convinced but still thinks it’s a demyelinating disease of some sort. He wobbles when he walks. The bad discs he has are not in play apparently.

I’ve not seen my family in nearly 14 months. My son will be 5 1/2 hours away for just over a week but won’t be able to stop even for a short visit. So much going on back home and I can’t help. I miss them so much.

We didn’t even make it to his sister’s for a bbq. He had no energy at all today. I’m just down and that makes him sad also. It’s not his fault. He’s also sad because his pain is somewhere around an 8.

If I cry I try to do it when he’s already in bed or if I’m mowing our acre. Mowing on the tractor remains great therapy. I pray often. I’m just weary.

I can’t keep up with what I want to get done. Every time I get the yard somewhat straight, another tree or limbs fall. It’s never ending. I guess I’m becoming more like Mom and Grandma. I’d rather work outside.

I want answers and I want them a year ago. I’m tired of not knowing. I like to know what I’m facing so I can gather my resources. In the meantime I journal and I joined an online MS support group even though we don’t yet know if it’s MS.

I now have Medicare. Time to take care of myself and see about joining a gym that offers Silver Sneakers so I can maintain my health.

Prayers are very much appreciated.