Whining

It’s cold and raining. Hubby has had “issues” since yesterday. It does not help matters that I’m in pain.

About two weeks ago while riding the lawn tractor, I had a sudden pain along my left little finger that also appeared in my left thumb. It’s remained in the thumb and thumb pad. I have an appointment Wednesday morning with Orthopedics. I could have had an appointment a week sooner but the location is nearly 90 minutes away and I am not familiar with that area. I would also be leaving Hubby alone way too long.

I’m hoping this only involves an injection. You would think that not having the use of a thumb would not be a big deal. Turns out it really is a big deal. It hurts to just get dressed.

This is also the day of the memorial service for my favorite uncle who died just over a year ago at 92. I just cannot leave home overnight. It is out of state. I cannot visit my family either. There is just no one to stay with Hubby and that long of a drive (and no wheelchair ramps) is not a good idea if he comes along.

I miss my family so very much.

I also found out today that my former co-worker lost her son to suicide two weeks ago. It broke my heart. She and I would always joke around at work. If a call came for her department, I just yelled it out since she was right behind me. She’d always say “we’re not here”. I always replied, “I know that trick!” God be with her. I just cannot imagine what she’s going through.

I’m sure things will improve when I’m in less pain and when the weather improves. It looks like I have a few more branches to drag away after last night’s storm. It just never seems to end. I may take my stepdaughter up on her offer of a little break late next month when she’s off work for the summer. A couple of hours off might help.

Still Waiting But Closer

We finally have the cardiac clearance. It was a huge run around for us and a bit irritating, but it’s now done. Either neuro just received it or it was misplaced in their office. We were assured a week ago that the clearance would be faxed that day to them.

We now await a call from neuro to schedule the first treatment date. He is still in a wheelchair but we’ve adapted to make things easier on us both. We bought a power lift chair with massage and heat online. I put it together. He can now be more upright in order to transition to the wheelchair. His back pain is much less.

He now goes on the deck without assistance. He can reach the bucket of birdseed in case the chickadees come over to his hand. There are activities of daily living that still require assistance. He cannot fix himself a meal and I help him into bed. For now, things are a bit easier. The heat and humidity is wearing him out today.

I received a jury summons today. Yes, I freaked out. There is no one to stay with him if I’m gone that long. It’s for the entire county (80 miles across). The closest court is 20 miles. The other court is more than an hour’s drive and I do not know that area at all. I emailed the court regarding this and they excused me from service without having to have a doctor’s note. I suppose they have a record of his handicapped status. I’m relieved but I’m hanging on to that email just in case.

Yet again, we wait. His PCP is not happy about the wait. He said it’s been three years since he first suspected MS and we’re just now closing in on treatment. The pandemic and search for a vaccine delayed us quite a bit. I pray the treatment halts progression and perhaps reverses some of the damage. It’s again a wait and see situation, but we’re closer…much closer.

Want to Cry

I am stressed. Actually, stressed more than usual. I don’t know why.

My mail order medication won’t be filled until May 1. That allows less than a week for delivery. This is not a medication I can go without.

The least little thing goes wrong and I overreact. I am constantly on high alert. Hubby is actually doing fairly well at the moment. We hope and pray his repeat test next week is the last of the pre-infusion tests and he can finally begin treatment.

Hubby’s son and a friend installed a wheelchair ramp which was donated by a widow they know. She wanted it to go to someone who would be blessed by it. Her husband barely used it. It is already a blessing and will help getting to the car so much easier. I will not have to worry about it being too steep and I will not have to worry about backing a wheelchair down. I can walk facing forward.

Perhaps part of the problem is that Hubby has issues at night. He cannot roll from side to side easily. He has spasticity in his legs and it is very painful. If he does not sleep well, I do not sleep well despite what our watches show. Mine shows deep and light sleep throughout the night and his shows a minimum of three awakenings.

Maybe infusion therapy will begin sometime in May. I had hoped it would begin next week but alas the repeat test.

I will see my PCP on Star Wars Day and may ask about something for anxiety. He ordered something in the fall of 2019 and I have used three since I had that prescription filled. I would imagine they are no longer worth taking.

This too shall pass but I do not want to fall into dark thoughts. I feel overwhelmed emotionally. I feel normal when I am able to work in the yard. It is very windy today and cold. Tomorrow will be much warmer and nearly cloudless. I’ll clear more debris.

We both need a medical break. That’s unlikely unless the infusion is a miracle drug. MS is an evil illness and changes day to day. He has his issues but cognitively he’s fine. That’s something for which to be grateful.

Finally Warm!

It is finally a beautiful spring day. I have less than two weeks to get the yard debris (we have an acre) to the side of the road. Yesterday I managed to get three tractor wagon loads out. I have 5-6 more to do. After last year’s pick-up, I moved leftover debris nearer the front yard. Genius.

I was going to work on more piles today after I got back from town but Hubby wanted me to check on the tractor to see if it would run. Hubby is in a wheelchair. The shed is nearly 50 yards away. Since the tractor did not start, I wheeled him down the ramp which is too short. I bet most of you can guess that a standard wheelchair does not like to go through grass. I found a large piece of cardboard. Every time he got stuck, I moved the cardboard until he was finally by the tractor. He has not been in the back yard other than the deck for nearly two years. He was diagnosing the tractor. After an hour he figured it was the battery. Duh. He then looked across the yard, staring. He was able to watch our birds from a different vantage point and from a shaded area. We then got him back to the house. Let me tell you, I would have no problem passing a cardiac stress test.

I drove out to buy a new battery and I installed it. She hesitated and then started up! I don’t need to mow yet, but she’s ready. I inflated the back tires, checked the oil and added gasoline. I will be using my chainsaw tomorrow to cut up some of the debris and get it moved. I have a jumanji in the back corner with briars. It always catches me when I mow so I’m taking the chainsaw to that as well and I’ll then spray the remaining briars.

There’s always plenty of debris and overgrowth here but this is my therapy. I know Hubby would rather I not cry in front of him. It upsets him that his MS stresses me out. I can cry on a tractor for two hours if I need to.

We should be getting a call from neurology within the next several weeks with the first appointment for his infusion. We’re praying it reverses his progression and that he’ll have function in his hands, left leg and reduced pain and spasticity.

I have my hopes up but I realize nothing may change in how his body works. His mind is intact which is not the case with a lot of patients his age. For that, I am thankful.

Tomorrow I’ll be fully vaccinated. Saturday he will be fully vaccinated. He wants me to buy a cake or donuts. He wants to dance. I think we can manage something with the wheelchair so we can dance.

I miss dancing with my husband. I miss his cooking. I miss going to parades or enjoying the beach scenes. We may never experience that “normal” again. We may find a new “normal”. We may get him a more versatile wheelchair.

My stepson is picking up a wheelchair ramp from a lady who no longer needs it. He will drop it by on Saturday and he and his friend will come back another day to install it. A proper ramp will be wonderful.

Things are beginning to come together. I pray the infusions help. We need a cure for Multiple Sclerosis.

Springing Forward

After what seems an eternity, we are on the cusp of being able to schedule treatment for Hubby. The pandemic, primarily, delayed the lumbar puncture which was done in late November. We now know for sure he has Multiple Sclerosis.

His second COVID vaccine is tomorrow. We received a call yesterday from neurology asking when he’d be done. I’m to call them next week so he can be placed on the schedule for the infusions.

The past several days have been great for him. He’s been out for appointments twice this week. We’ve been on the deck four times this week and even had lunch outside. We also held out sunflower seeds for the chickadees and they accepted our offerings.

In about a month we’ll also have a ramp which may work better from the deck and lead to the driveway. If it works that way, Hubby will be entering the car from a level surface. We’re learning.

Yard debris will be picked up April 19th so I have some work ahead but it’s all piled up closer to the road. Time to get the tractor and big wagon going.

Spring has sprung. Time to move forward.

Blessings

Things have been coming together all at once it seems. The portable ramp is two feet too short so it’s secured in a way that he only has to manage one step. We may be able to adjust that from the top just a bit. His son called to say someone was getting rid of their L-shaped ramp. He sent pictures and it looks like it’s a good fit for the front of the house. If it works out, I’d definitely get some solar lights for it. I’ve seen material that provides a nonskid surface as well. He could go straight from the front door to the driveway. Easier on him and easier on me. If we buy the van, it has a push-button ramp. No more lifting the wheelchair into the trunk. He could lay on the back seat to sleep on long trips or sit in the passenger seat next to me. Maybe I could see my family again.

Our last vaccines will be the end of next week. He also has his cardiac clearance and his last gel injection next week. Maybe he can begin treatment in 8 weeks. It’s so much closer.

I’ve had moments of “depression”. I talk to Hubby about it. I think it’s caused by “where the heck is spring”, the pandemic and just so much to schedule in such a short period of time. This journey is nothing if not overwhelming. It’s something different every day. He’s in pain every single day, just varying degrees of it

Hubby wants so badly to walk again and to have the ability to do things he used to do. His hand issues make guitar playing difficult. He’d love to write again, but he uses the guitar to inspire the lyrics.

MS brings with it so many issues which I won’t cover here. For comfort, he’s down to two pair of fleece pants and two flannel shirts that don’t make him feel as if he’s being choked. Last summer he wore swim trunks and tee shirts.

Progress

I’ve been under so much stress lately. I’ve been praying for Hubby and have had others praying for him as well. Seems most of the prayers have been answered at once.

We live in the boonies of Long Island. We’re about 10 miles from the eastern end. The distribution of COVID-19 vaccine is sparse out here. Most of it is upstate or in and around NYC. I have been stressing over the vaccine because Hubby must wait a month after his final dose before he can begin the treatment that could halt and/or reverse his progression. His left leg barely works. Just six months ago he could walk with a rollator. He is now in a wheelchair. A huge thing for him is making his own cup of coffee or planning meals.

Yesterday I finally got through online with Walgreen for the vaccine. I thought Hubby was already working on his appointment as well but he was updating his account so he missed out on appointments. My appointment was scheduled for today. I kept refreshing the page and hours later appointments returned. Hubby’s appointment is tomorrow. Our second appointments are near the end of March so the soonest he can begin treatment will be late April!!

His portable ramp came today. We have to adjust it somewhat but once that is taken care of, he’s willing to get out a little more because it won’t be a strain on him and especially on me. Those are his words.

Labs have been drawn, so cardiac clearance and MRI remain before treatment begins. I am able to relax a little emotionally…just a little. Once everything is scheduled, I can breathe easier. The biggest unknown was his vaccine appointments. Everything is beginning to fall into place.

I was even able to get new tires today so that long drive for the infusions will be safer and I’ll have peace of mind.

A man who works with my sister-in-law may be selling his 2005 wheelchair accessible van with very low mileage and garage kept. There is still a lot to consider. Should Hubby be blessed with reversal of symptoms where he can walk again, we would not need a van. His head cannot go to where he will never walk again or that he’ll progress further.

We still need to renovate the bathroom to make the shower safer. We have a list and a plan. I also plan to have a nervous breakdown because by golly I’ve earned it. I would do it all again for him. I love him so much and am committed to being here for him no matter what. I’m hopeful things will return to a version of normal that allows us to watch a parade, visit his Mom, take a long trip to see my family and eventually return to cooking together. He’s a much better cook.

Whatever is ahead of us we’ll face together. At last we have treatment in sight and I am so thankful!

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!