Stop the World, I Want to Get Off

We are trying so hard to find COVID-19 vaccine appointments on our end of Long Island. Everything through the state thus far is more than an hour away, with most available appointments upstate or around NYC. That’s too much for Hubby.

I went to the next town this morning to drop off registration forms at a local Mom and Pop pharmacy. I found out last month after the fact that they had vaccinated 1000 people. Someone from the pharmacy responded to my social media message on Friday and said to drop off the registration form. I went there and saw signs stating no more were being accepted. I went to pay for the birthday cards I needed and the pharmacist stated the list was quite long but he’d take our applications. I just wanted to cry. I constantly monitor chain pharmacy sites as well as the state site. I’m tired.

Hubby can begin his treatment for Multiple Sclerosis 4-6 weeks after his second vaccine. The pharmacist suggested I ask the neurologist during our telemed visit Wednesday if he knows where Hubby can get it.

I also need to get new tires soon if would stop bloomin’ snowing. Right now it’s raining and snow is melting. Hubby’s lab appointment is tomorrow. It’s a 30 minute drive. He now uses a wheelchair and we have no ramp. I cleared the driveway. I backed into the driveway so the plan is to get him to side-step down the front two steps to a waiting wheelchair and wheel him to the car. Too much snow remains to drive into the yard on the return trip so I’ll have his rollator just inside the front door awaiting him. His former physical therapist would not want to know how we get him in the car, but it is as safe as we can make it right now.

It feels as if things will settle once we get the blood drawn, the cardiac clearance done (don’t know who doc will recommend), vaccines and brain MRI. After all that, his first two infusions will be two weeks apart and an hour drive away. Once those first two infusions are done, it then becomes every six months. The manufacturer is covering 100% of the $10K cost per infusion.

I’m exhausted. I’m tired of winter…the winter that was supposed to be mild but wetter than usual. I don’t sleep well most of the time since pain awakens him and he has difficulty rolling over in bed.

When I returned from the pharmacy, I had to prepare a marinade for dinner and then fix lunch, help him with dressing a little, shovel more snow and put air in that confounded right rear tire. Still have to get the tires replaced soon.

This is more a rant than a post. I did get a call from my son today while I was on the way to the pharmacy. It was good to chat with him. I miss my family so much. If the infusions help him to the point of standing without pain or even walking with an aid, maybe a trip south will be in the cards.

In the meantime, we continue our routine and try to take one day at a time. Hopefully we can find a vendor with our insurance for a portable wheelchair ramp until such time as we know if we will need a permanent ramp.

Whee!

Feeling Deflated

I’m feeling a little down this morning. The Multiple Sclerosis part is what it is and I’ve developed a routine for dealing with Hubby’s day to day issues.

I had hopes that things in this country would have begun to settle down, yet “leaders” are still supporting lies and unrest. It breaks my heart and it has me feeling very disheartened and with a case of the blues. I know my opinions differ from those of most of my family. Sometimes I feel they think I’m influenced in my opinions by others. I am not. I just have a latent political gene and my opinions are my opinions. I am so weary of this. It is not depression but I am aware it could slide that way.

I’m so tired of this pandemic messing things up. Hubby needs to be finished with the vaccine before he can begin treatment for his progressive MS. We don’t have the vaccine here right now. The closest appointment is more than 60 miles by interstate. The interstate is a 30 minute drive from here. We’re in the boonies.

The fantastic news we received this week is that the cost of the infusion medication will be covered 100% by the manufacturer due to our income and the type of MS he has. Full cost of that medication is just over $10,000 per infusion which is every six months.

We’re still trying to get a temporary wheelchair ramp from the Town. Our Habitat for Humanity does not currently do ramps or house repairs. Our pastor is helping us track resources for that. It would help immensely. We have adaptations to make but not that many.

Hubby tries to walk with the rollator every day at the same time. His shortest walk was 3 feet and the longest was about 15 feet. He has even made his own coffee twice this week. He tries to take some of the work off of me. We put the new coffee table together as a couple and I think that helped him mentally.

We’re going to make it. There’s just so much going on at one time. I’m ready for spring and I’m ready for this pandemic to be gone!

Our MS Journey Officially Begins

We saw the neurologist today. He reaffirmed that Hubby has Multiple Sclerosis. He thought before that he had the Relapsing Remitting MS. We did not. For nearly three years, Hubby has only had progression. Doc now says he likely has Primary Progressive MS.

We went over the lumbar puncture results as well as treatment options. He recommends a medication administered by infusion. It involves a long drive and the first two infusions would be two weeks apart. An infusion visit is about 2 1/2 hours long, sometimes 3 hours. One of his current medications was tripled in strength. That should help his pain and perhaps help him walk or regain his fine touch for simple things like holding a cup or even play guitar. He wants to help me around here.

We have an issue where the infusions can only begin 4-6 weeks after the second COVID vaccine. We are now eligible for that in this area. It’s a matter of finding out when and where we can get it.

We are now considering a wheelchair ramp. If the infusions reverse progression, we may not need it. Perhaps we can borrow one from the town. They offer one for three months for temporary disabilities. This is not a temporary disability but three months would help until treatments can begin.

There are so many things to consider. It’s a bit overwhelming. He still says it’s not fair to me. Life’s not fair. We’re in this together. He mentioned where he’d like to be buried. He laughed. I told him it wasn’t funny. He figured he’d rather be buried next to the church near his 7 times great-grandfather who founded this town in 1640. He’d of course be in the newer section. He is currently the last direct descendant still in this town. Oy! Gallows humor is becoming a regular thing with us. That may be a good thing.

For now we’re back to taking one day at a time and coveting prayer. Wasn’t retirement supposed to be easier? Oh well. Here we go!

It’s Multiple Sclerosis

I saw my PCP this morning and Doc had someone contact neurology about the results of Hubby’s lumbar puncture. It had been five weeks today since the procedure. I was told the neurologist would call. The call came in before dinner.

The lumbar puncture ruled out many diseases, but it was positive for MS. We’re not sure what type it is, though he thinks it’s the relapsing remitting kind and that Hubby’s had it many years. That does not compute with us. Symptoms began when he turned 65. There has been no remission; just progression.

Last year he was walking with a stick. By February of this year he was using a rollator. Now he’s using a wheelchair.

Next month is our appointment. It’s just over two weeks away. We’ll go over the test results in more detail and discuss treatment options and hopefully resources. If we aren’t given any information on resources, I will call the National MS Society and speak with a navigator.

No pun intended, but Hubby is rolling with this at the moment. I am stunned even though I suspected it was MS. I need a good cry. That may require me to take a drive tomorrow. I need to digest this. When that part is done I will be in full forward mode. All that has changed is the name. It’s not something worse than MS. It’s not something deadly. MS may shorten the average life span by a few years but those who die from MS die from complications involving swallowing or infections.

God WILL show us the way to go. He’s not failed me my entire life. I doubt seriously He’ll start now.

I’ll have my mini pity party and forge ahead. Nothing has changed except a label. I love my husband. He loves me. We’re in this together and we’ll find the weird humor in it as well.

Ready. Set. Go.

Twas the Day After Christmas

Twas the day after Christmas and all through the house plenty to do and thankfully no mouse!

We had a video call with Hubby’s son yesterday. Daughter-in-law is sick with bronchitis and sinus infection but not COVID. They are otherwise fine. My aunt and second cousin back home tested positive. We do not know my uncle’s status. He’s in his 80’s and not in the best of health.

We also spoke with Hubby’s daughter yesterday and saw on video the kids opening gifts. The baby is content with wrapping paper and big brother is wired! He’s such a joy.

Last night was Zoom time with my family back home. I saw my son’s face a time or two in the video frame. Everyone there in food comas. My brother kept falling asleep. Mom’s sour cream shirt was a hit as well as my niece’s shirt about her having opinions. Son was very happy with his gifts, especially ones that were a nod to his Dad’s military service. His Dad died young and our son was eleven years old. Son, now a grown man, will have to have surgery on his wrist as some point. His tendon is floating about without an anchor. I worry he’ll procrastinate further.

Hubby has been without pain meds for more than a week now due to the incredible burden put on the Postal Service during this pandemic. He seems to be progressing downward the past two weeks. Home PT has ended.

The lumbar puncture was done November 24th. This Tuesday will be five weeks since it was done. Results were supposed to be available in two weeks. I will call neurology on Monday to check on them. I see my PCP Tuesday. He may call again as well. We’re tired of waiting. We’re tired of this pandemic.

Hubby bought “all my girls” a hug ring. It’s adjustable and has two hands in a hug position. I have had ONE hug from someone other than Hubby in the past nine months. He bought me water bug slippers with eyes and six legs. I love them. His guitar pic made from a quarter has not yet arrived but I did get him lightweight shoes and a gel cushion to make walking and sitting a little less uncomfortable. I did get him a few fun gifts as well.

I still miss my family. I miss normalcy. I miss my husband so much. We did so many things together and it was fun. We’ve been married 4 1/2 years and we’re retired. We don’t know if this is MS or some other autoimmune disease or even a neuromuscular disease. We just want answers and treatment. It’s been going on for nearly three years. Seriously, it’s time for answers.

Emotional Rollercoaster

We are less than a week away from a diagnosis. Hubby had his lumbar puncture about 10 days ago. Doc said he was looking for anything “autoimmune-ish”.

Now that we’re close to an answer, we’re both anxious. Hubby keeps wandering in his head. He feels he should be able to help his aunt whose short-term memory is a third of what it was a few months ago. She’s 91. He wants to see his Mom. He also feels badly that I work so hard and that I don’t have help.

On the good side of things, the dryer is fixed, the car is scheduled for December 17th to be repaired, I no longer have to have a medical restriction on my license and I managed to get presents wrapped and shipped.

What triggered me today was the death of Squiggy from Laverne and Shirley. He died of complications from MS. I don’t know what kind of MS he had or what the complications were. It just took me back to losing my first husband at a young age. I didn’t date for 17 years because I was so afraid of getting close to someone and going through that again.

Hubby was my first love. We broke up decades ago, married other people and reconnected in 2009. I’m afraid of watching him decline even more. He’s used to being very independent and fixing things himself. We had fun early in our 4 1/2 year marriage. We laughed, danced, went to parades and enjoyed life.

Even before the pandemic hit we could no longer do those things. This journey is close to three years old.

Answers are so close now yet I’ve been teary this week. Home PT is encouraging. Hubby is sweet as ever. When he says he loves me these days, it has such a deeper vibe. It’s stronger if that is at all possible. I love him so much. Taking care of him is not an issue for me. Yes I sometimes get tired or I have pain but he’s not a burden to me. We’re in this together.

I’ll do what needs to be done, BUT…I still hate cooking.

Getting Murphied Again

Today was the day for a couple of quick errands. I drove my low mileage 2010 car down the North Road and was a block from my first destination when the car started losing power and the yellow wrench light came on. Luckily, the light ahead was turning red and the car restarted. I finished chore number one and then continued on to my next destination. There were no further problems.

Here’s the thing: hubby has a lumbar puncture Tuesday. The neurologist does these at his office one hour away. He does not do them at the much closer office, nor does he do them at the hospital where he admitted my husband in late September. That would have been too convenient considering hubby can barely walk and we do not have a handicap ramp at home. We manage with God’s help to get hubby in and out of the house safely.

Hubby’s sister and brother-in-law both have vehicles that are too high for hubby to get into. His youngest sister lives farther away, but she and her husband will drop off their spare car for us to use. It’s such a blessing. Hubby and I were both misty eyed.

I’ve dealt with a lot during this pandemic. I’ve done most of the work here for the past two years. Hubby can still dress and feed himself. He cannot walk without a rollator. I do the rest. I also had to deal with mice, thankfully just two. There have been leaks in the cellar, a dead car battery, juggling doctor appointments, nurse visits and home PT appointments. I’m exhausted physically, mentally and emotionally. I haven’t had a haircut since February. I haven’t seen my family in more than two years. Hubby hasn’t been to his Mom’s house in 13 months.

I’m not in the spirit for Christmas. I do realize the real meaning of Christmas. Church is viewed online. With registration I could drive to the barn by the church and listen to the live service via FM radio in my car. The thought of putting up the tree alone for the third straight year is not something I look forward to. Christmas will be virtual, though I may bring his Mom here so she can see her grandkids on the television and talk to them.

I’m having a pity party. I’m not the one who can’t walk. I’m not the one who without the ability to touch. I don’t have to depend on my spouse to do nearly everything for me. I do have the brain fog because my brain is tired.

I pray we have a diagnosis in the next couple of weeks so we can move forward. I just need Murphy to leave us alone so we can deal with one crisis at a time. I just want to cry.

Bad Day

It’s been a rough day. Humidity rolled in today and hubby’s in pain and very weak.

Hubby still has home PT following his hospital stay. The schedule got messed up so he was due to have three straight days of therapy this week. He canceled for today and his therapist was totally understanding. She said it’s a lot to have it even two days in a row. She is terrific. She works him hard and says the muscles are responding. He was able to walk 45 feet with the rollator until his left foot gave out. I work with him also but I may just pick it up again tomorrow and give him a day off.

I feel very stressed. I feel I can deal with the MS if that’s what it is. He’ll have the lumbar puncture the week of Thanksgiving.

The added stress is from the pandemic. We’ve been sheltering since late March. Groceries are delivered. I go out only for appointments or to pick up a few necessary items. With the change in season, I am losing my tractor therapy until Spring.

This is a small town. Both main roads are two lanes. The big town is more than 15 miles away. It’s not that big of a town but it is by comparison. There are political “parades” where folks drive more than an hour into our small villages and tie up traffic. They begin their “parades” in towns that have six to eight lane highways. We are still in pumpkin season where people drive from NYC for pumpkins. Tourist season began early due to the pandemic. This means it’s dangerous to make a left turn out of the driveway or onto a main road. I refer to it as right turn season. We’ve been doing this for at least six months. I’m ready to get back to some peace and quiet and have some freedom to visit my mother-in-law on a day when we don’t have appointments going on.

I still have to put patio things away for winter and prepare the tractor. I’m tired. I am so very tired. I want to cry.

Tomorrow we go to the bigger town for an appointment and possibly get to Costco to pick up a prescription. Maybe I’ll break bad and pick up something for dinner so I don’t have to cook tomorrow.

Sorry for the rant. Thank you for reading.

Small Steps…Literally

Hubby is facing a probable diagnosis of Multiple Sclerosis (late onset). He was in the hospital recently for steroid infusions. This has taken away his pain! He has stiffness but the pain which used to be an 8 or 9 every single day is gone. Steroids may work up to six months, so we’re encouraged.

We have Home Health check his vitals and he has two visits remaining for next week. He’ll have home PT for three weeks.

For two months he has been unable to command his left leg to lift. He could once in a while lift the foot or wiggle a toe. He was feeling so well today he got a little spunky and wanted to see if he could use the walker. I had the wheelchair right behind him just in case. HE WALKED! He walked “normally” for several steps, about 15 feet, before his left foot started to drag. He hasn’t walked that well, albeit a short distance, for at least six months!! I was nearly in tears and so was he.

He’s curious now if he can walk down the porch without my assistance for our trip to neurology on Monday. We’ll be very, very careful. I’m sure a lumbar puncture is the next step but at least his pain is gone and the hour-long trip for the test would be less taxing on us both.

We are encouraged. These are small steps but they are small steps forward for a change.

In a Funk

Perhaps the weather is affecting my mood. It’s been a rainy few days and today is cloudy and cool.

I suppose the cooler weather is better for Hubby. Last night the humidity came through and he needed help getting into bed. He did not have enough strength to stand. He sees his PCP in less than a week. If PCP agrees with neurology I will call to have Hubby scheduled for inpatient treatment to reduce the inflammation in his body. I pray this helps.

I did speak to my son twice yesterday, the second time was a family Zoom meeting. I may ship his birthday present to his temporary location. I miss him so much. I miss my entire family. We just cannot travel right now. We may never be able to have a long drive together again. If all else fails perhaps Hubby can stay with one of his kids for a week but neither currently has a first floor bedroom. One is trying to get a new house that would work out well but it has a hiccup caused by the current owner so they haven’t yet closed the deal. That house is one level. His other adult child only has a half bath on the first floor.

I see barriers now that I overlooked most of my life. I moved things around in Hubby’s office so his printer can be accessed without his having to stand and take a chance on falling. I may get extended hinges for the bathroom door which would allow for the doorway to be about two inches wider. We’re still working things out as we continue to wait for a diagnosis. It’s frustrating and I am tired. I’m a caregiver who has no help nearby. We’ve been playing this song for two years now.

I suppose the next step in determining a diagnosis will be a lumbar puncture. It would be wonderful if that could be done while he’s in the hospital.

That’s what’s going on with this funk. I need a nap or something. I feel discouraged. Sometimes I feel invisible. Hubby is so sweet. He wants to help but cannot. He says it’s not fair to me. He wants to be able to do something fun again. We’ve only been married four years.

If Hubby indeed has multiple sclerosis at this stage in his life it is most likely Primary Progressive MS. Christmas Day, he walked. He walked like he was drunk but he walked. By February he was using a walker. He has been somewhat stable the past two months. We could use answers, treatment and hope.