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.
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.
Today is our fifth wedding anniversary. Half of our marriage has been trying to figure out what is wrong with Hubby. It’s Multiple Sclerosis.
Our plan was to go out for breakfast today. It was a bold step. We used to go out for breakfast on Sundays at the Diner which is an historic building and not accessible. We decided on the deli across the street from there where Hubby used to stop for coffee before work. I had remembered a ramp. Turns out the little ramp was on the inside of the building. A lady checked the front of the deli for us and said it was wheelchair friendly.
I ordered for us and we chose to eat outdoors. There was a slight breeze, the temperature was lovely and the food was delicious.
This was a huge step for us. Hubby has been homebound for so long except for doctor visits that he was almost afraid to go anywhere. We even checked out the Old Barn by church where they are holding services for June. He’s strongly considering going Sunday even though showing up in a wheelchair bothers him. This is huge. Our lovely day continued as he guided me to fix some things for my garden. He’s now sleeping.
He’s had his first complete infusion. Results are noticeable after 3 months to a year. He is able to flex his left foot. It is easier to stand despite the heat. He has noticed subtle changes in how his hands feel. If his hands come back, he can play guitar. If he can stand, he will have more freedom in and out of the house.
After this very good day, I am hopeful and so is he. Happy fifth anniversary to us!!
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.
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!
Hubby had a rheumatology appointment this past Monday. He could not command his left leg to lift. Because hubby has an as yet undiagnosed illness the specialist wanted him to see the neurologist. He would have sent us to the ER had it not been for this pandemic.
We were added to the neurologist’s schedule Wednesday. He tested the leg and hubby had feeling in it but still could not command it to lift nor wiggle his toes. Doc was very concerned and said, “MS does not act like that!” He ordered three more MRIs of his lumbar spine, cervical spine and brain which he’ll have this coming week. After all this, ALL this, he thinks it may be a disc causing the majority of the mobility issues. If it’s a disc 13 months after I asked if it could be just that, Doc owes me a year’s worth of his salary. Just kidding, but still…
The brain/cervical MRIs will show if there is any change from the past 18 months from previous scans. It’s possible he may still have a milder form of MS. Hubby said if it’s just his back and getting that treated allows him to walk again…the other symptoms are manageable. I feel the same. He can move about, see his Mom for the first time since October, we can do things together and HE CAN DO THE COOKING!!! He may never get his red lawn tractor back. I’ve got squatter’s rights on that!
Oh how I love this man of mine. He’s a good man. He’s a sweet man. He’s really smart, too. He knows not to criticize my cooking but really compliments me when it’s outstanding.
I’m feeling hopeful and blessed. I’m hopeful that things are coming together.
Our plumber even made it to the house today after a week (not his fault and understandable) and fixed the latest leak in 30 minutes. Because of what he’s dealing with I was also able to minister to him and let him know I am praying for his situation.
Next on my list is tractor therapy. It’s so hot and humid that I have locust trees sprouting up in the front yard. I will do only the side and front yards after 6 pm when things cool a little. If it’s too hot today I may have to wait until Thursday.
I’m hopeful that I’ll be able to see family at some point. We still have the pandemic to deal with and I’m very cautious about that, but…
We had a day two weeks ago (just one) in which hubby was walking normally. He’s back to walking like ET again. We were in town to get his knee injected today. After leaving lunch at KFC he barely made it to the car. I had to lift his foot into the car and getting into the house was a tad easier.
January 2nd he’ll have two more MRIs and a follow-up with neurology again to see if this is probably MS or if it may be related to his neck radiation seven years ago. I feel we’re closer to answers or at least narrowing down the possibilities. I personally believe he had several things hit at once because he likes to shake things up.
Just over a week before Christmas. The tree is still in the cellar. This will be my third Christmas doing everything. Tree and stockings will be up but probably less decorating than before. I still need to go back to town (20 miles) to finish up shopping and finish gift wrapping. I’d like to make the chocolate treats. One of hubby’s presents is fun size Baby Ruth bars. We can’t find them here so I ordered them online and marked the package “Open Last!”. That will be fun.
New grandbaby on the way. Hubby’s daughter is having a girl (pretty sure) in mid-late April. He tears up about it. He’ll have a princess. He doesn’t stand a chance. She’s not yet born and she’s already stolen his heart.
Time to get the tree upstairs, but first….coffee!!
It’s now been 20 months without a diagnosis for hubby. We see another specialist tomorrow. We should also get test results soon. He has difficulty just walking across a room.
Our big day out is once a week to his Mom’s so I can mow her lawn. Her grandson can no longer do it. I also mow our acre. I drive eight miles to the bank and do the shopping alone. I do it all for now.
We have gift certificates for dinner out and an overnight stay nearby but all the rooms are upstairs and there isn’t an elevator. Maybe we can go before the end of the year or return the certificates to the kids so they can enjoy going if we cannot.
We’ve been married three years now. I last saw my family July of last year. I miss them so much. Mom has outpatient surgery soon. I want to go home for a visit but we have to get him well. That’s a very long drive for him and I don’t want to leave him for a week. I don’t like leaving him alone for two hours! There’s no one to take care of him if I go alone.
I hate seeing him in pain. He hates that he can’t help me. We are so close to answers. We’ve been in limbo too long.