Sweet Day

Yesterday was a much better day. The heat and humidity were down and hubby was having a much easier time getting around the house. It also puts him in the mood to tease. The teasing used to annoy me a little. I actually appreciate it these days.

We received a call just before noon from his daughter. She’s in town and staying at her in-laws’ house. She asked about visiting us but staying outside and if she should wear a mask. Since it was outside at a great distance we said masks weren’t necessary. Her three year old was told to keep a distance as well.

I managed to help hubby out to the deck. He could actually see his daughter, grandson and brand new granddaughter! His daughter and grandson stayed on the lawn but the baby was close enough where we could watch her sleep and zoom in for pictures. We really wanted to hold her but we can’t just yet. She is the first granddaughter. There are three grandsons.

This tired hubby out but really made his day. They may come back out later in the week! If my son-in-law comes out next time I may ask him to help get the awning up. I’m too short and hubby doesn’t want me even on a step ladder. The awning would provide plenty of shade and make the deck cooler. Perhaps hubby can get outside more often when it’s up. He really needs to get out of the house. Yesterday’s visit weakened him and he had a little sunburn but it was worth it.

Although we couldn’t hug the kids it lifted our spirits to see baby girl for the first time in person. Her big brother is getting so big. We found out the day after our wedding that his daughter was pregnant with her son. Grandson number three is getting so big and he’s so sweet. We don’t see his kids or grandkids very often even before the pandemic. His daughter lives out of state and his son is just over an hour’s drive away. My family is about a ten hour drive away. I miss them so much.

It was very uplifting to have company even at a distance. It was such a sweet day.

Please!

Day two.

Yesterday afternoon was the worst day for us in this MS journey. The left leg was doing its usual thing. All hubby could do was drag it. Wouldn’t you just know the right leg was nearly completely useless also. I had to sit him on the rollator and push him to bed. He barely got on the bed. I lifted that left leg onto the bed and did my best to get him situated so he’d be comfortable.

I was so hopeful that today would be better. It was barely better. I asked if he was okay for me to leave him to mow his Mom’s lawn which was very high. He said he was fine. I got home close to two hours later. He napped while I was gone. I helped him sit upright on the couch. He has absolutely no strength. None. Is this because of the humidity? I don’t know. I know heat and humidity can be a curse to those with MS. We have to get the lumbar puncture so we know what’s going on for sure and get a proper treatment.

He wants to cry but doesn’t. I do too. I can’t fix him. I pray and have others praying. I know God sometimes waits and there’s a reason for it. He feels so helpless because he can’t help me. He feels helpless because his body won’t listen to the signals from his brain. He looked at his left leg a few days ago and commanded it to lift. It did nothing. The signal was broken. I had to move his leg.

Please, Lord, I am begging. You told him you would help him. I’m not the most patient person in the world and never have been. It’s been two years and he’s getting worse.

Tomorrow I will call neuro about why the lumbar puncture has yet to be scheduled. If hubby gets mad, so be it. We’ll figure out how to get him in the car from the house, into the doctor’s office, insist someone there help get him back into the car for the hour drive back and arrange for someone, maybe his son who lives near where the procedure would take place, to help me get him out of the car and into the house so he can go to the restroom and lay flat on the bed for a while.

Please, Lord. Please.

My Heart Breaks

These are tough times. It’s made more difficult seeing my husband struggle every day and be in pain every single day. Maybe the weather is making his pain worse right now but it breaks my heart.

He’s not convinced just yet that he has Multiple Sclerosis but most of the symptoms point in that direction. He has the foot drop, pain across his abdomen, back pain, loss of fine touch in his hands, brain fog and inability to lift his left leg most days.

He feels he’s a burden to me. He is not. Is it harder for me to do certain things without help? Of course it is. I would love help cleaning up the yard of debris but the town has postponed picking it up indefinitely due to the pandemic so I have some time. I would love to get the deck repaired and stained. We will have to hire that out. The bathroom needs to be redone to accommodate his limitations such as a step-in shower and perhaps replace the hinges on the bathroom door with those that extend and gives him more room to get the rollator in there.

Sunday afternoon may be a good yard day. Monday is a good day as well but his Mom may need to go to the bank then. I can also check her yard and see if it needs mowing yet. We’ll wear our masks to be safe for one another and our loved ones. We don’t want Hubby to get sick.

I just want to cry. He’s in bed right now. He doesn’t hurt as badly when he’s in bed. I can’t help him. I do my best to make things easier for him. He’s on a new medication for inflammation. This medication is slow to act so it may be three months before he notices any change. Rheumatologist saw something in his labs so yet another medication. We need the three main doctors to have a conference and let us know what they think he has. He sees his PCP in two weeks so we’ll designate him as the quarterback in this journey.

He’s excited that he may be able to get on the deck for a few minutes and enjoy the outdoors. If he felt safe enough to get into the car, I could drive him to the beach to at least look out over the Bay. Only residents are allowed on the beaches right now. My family back home are having restrictions lifted already. We cannot.

I will head out for groceries Saturday. I still have to be so careful. We are in a small town which has already begun to see an early “high season” with tourists coming in. We have two grocery stores. Shopping for food is a major challenge. I’ll wear my mask and take my clorox wipe to clean the grocery cart handle.

I’m stressed. I’m not the only one. We’re all stressed at one time or another. I miss my family. I worry about them all. Zoom is wonderful.

Eight years ago today my Pop died. I miss him every day. He was my hero. I’m sure that pain is also why my heart is breaking.

I’m not depressed. I am sad and in need of a break for me but especially for hubby. I wonder if he’s scared but I don’t ask. Sometimes it seems this is advancing so fast. A year ago he was able to drive the lawn tractor/trailer to the edge of the yard. Lately he cannot manage to get down the hall with a rollator.

My heart is breaking. Please God guide us.

His First Trip This Month

Hubby needed to get labs today so this was his first venture out in a month and also the first one using the rollator outside. He chose not to use the rollator going into the lab but asked me to bring it inside just in case.

He enjoyed the 30 minute drive there and back. I did stop and get him KFC. We had two pieces for lunch and froze the rest. All was well with the world until…

He got out of the car using a strap to lift his foot. He made it to the porch. There is one step before the landing. We have no hand rail until the ground thaws. He had his right foot on the first step and had difficulty lifting his left leg (foot drop). I was not behind him and he lost his balance and ended up on the grass. There was no panic. I gave him about 30 seconds and then asked if he was injured. He was more shaken than anything. It took a while to get him up and in the house. If he had been hurt I would have called the Fire Dept. or run to a neighbor’s house. He suggested the possibility of getting a ramp. I believe the town does that also at cost.

I learned later than a fall can drain the energy out of an MS patient. It’s been six hours and he’s dozing on the couch.

I can accept that things will be challenging. The leaks into the cellar stressed me out more than the MS. He’s accepting what he can and cannot do. This changes day to day. Tomorrow he may be able to walk more easily. He loves the aid that helps him put his socks on and he’s trying to talk his Mom into getting one. My Mom has one as does my eldest sister.

I love this man so much. I’ve loved him since I was 21 years old but God knew the timing was not right. I had to grow and I was very naive and sheltered. We’ll celebrate four years of marriage in June.

Bless his heart. He’s trying to figure out a way that I can go home for a week. Best bet in my opinion is for him to stay with his Mom as long as he can get the rollator around. We’ll work on that plan.

That’s all for now. He swears he’ll be in bed by 9pm. That’s probably a good idea. I have laundry to bring up in a few minutes and the dishwasher is running. I may with God’s help be able to get back to normal cleaning around here. I still need to get to Ace to get birdseed for the squirrel….I mean birds. I love my birds. Not too fond of the squirrel. Hubby had chickadees eating out of his hand a year ago. They love sunflower seeds. I hope he can spend time on the deck when it warms up. I’ll try to get the tarp over the deck frame so we’ll have some shade.

Scary moment in the day but hubby did get outside and get some fresh air. He’s not hurt. I am thankful!

Head to Desk

We should be calling soon to schedule the lumbar puncture for hubby. We’re both feeling very discouraged and wonder if it’s a touch of depression. His health is pretty much the same. He has problems with that left leg, MS hug and fatigue. He said he can deal with the hand neuropathy. To him that’s minor. Dressing is challenging but mostly with the left sock.

I worry about him. He worries about me. Right now if we only dealt with MS we would be fine. Seriously. We’re being Murphied as in Murphy’s Law. There was a leak for a week into the cellar from the area near the toilet. No leaks on the main floor. I’ve been hauling water outside when the shop vac fills up. There are buckets over half the area of my laundry room in the cellar. Joe fixed the toilet and we thought that was it. WRONG! The water pump was running continuously and the leaks came back. We shut the water off before bed. We’ll call Joe again tomorrow and show him the cellar.

That stresses me out and it stresses hubby. He could fix that before MS. He doesn’t want me stressed. He feels so badly for me. He calls me his real life angel because he wonders who would take care of him if I wasn’t here. I’ve loved this man since I was 21 and he wasn’t even my type. We’ve been married since 2016. Half our marriage has been dealing with what they are now sure is MS.

He wants to see if he can get home health daily for a week so I can go home and see my family. I’d love that. I was hoping he could go as well. We’ll see what shakes out.

It’s so difficult for people to understand what MS entails. It’s different for every patient. A shower is a huge deal for him so we’re going to get estimates soon and have someone install a walk in shower. It exhausts him for hours. I bought rinseless gloves for washing him up and rinseless shampoo.

Sleep is his favorite time because he feels better when he gets up in the morning. When fatigue sets in, it’s sudden and complete. I liken it to removing a battery from a running car. He’s got nuthin’ in an instant.

I was folding clothes in the bedroom and just started crying. I don’t know if it’s grief or depression. I’ll reach out to caregiver support. It’s common and the symptoms are spot on for the most part. I told hubby if he needs to cry, let it loose and I’ll cry with him. Afterward we can finish off the chocolate covered strawberries. Gotta keep that weird humor. We both have it. God help us!

On Your Mark, Get Set…

Hubby saw his neurologist recently. There was only one more gel injection for his knee, so Doc said to give it a month for that to work and then call to schedule the lumbar puncture. Because hubby’s symptoms have never gone into remission Doc now suspects he has Primary Progressive Multiple Sclerosis (PPMS). He believes the progression is slow and at the lower end of the scale. The signals from his neck to the rest of his body are interrupted.

Hubby doesn’t want to give in to MS. He’s been hesitant to get a mobility device. I let him take his time. He came around faster than I thought. His sister had a four wheeled walker. He now wants a rollator which Medicare does not cover. He found one on Amazon that looks like it will work and it also has the option to use as a transport chair. He could actually go shopping with me. If he gets tired he can sit and I can push. He needs to walk more and rebuild the strength in his legs.

Two days ago he tried walking down the hall. He was dragging his left leg and his foot was turned inward as if atrophied. He couldn’t lift his leg. Apparently this is still called “foot drop”. My Google PhD tells me a foot and ankle brace would help that. We will ask Doc when we go back. In the meantime his rollator is coming tomorrow. I now have the handicap placard so we can park closer for doctor appointments. Maybe he can finally make the very short trip to his Mom’s house. He hasn’t been there since early October. She’s been here two or three times since she relies on her 90 year old sister to drive. I know she worries. I’d still like to see my family. It’s been a long, long time and it’s a 10-11 hour drive depending on how long it takes to get off this island. I hope I can before the heat of summer if he’s able.

I sent an email link to my family about PPMS that explains some of what we face. It doesn’t cover the tingling in his hands and loss of fine motor control. He can still dress himself but the problem with his hands makes that difficult. He now has aids to help him with socks when that time comes and a long handled shoe horn for help with that left shoe…always his left shoe. I may insist he share that. We both have “grabbers”. I use mine because I’m vertically challenged. He uses his to be annoying. He also has a strap to help him lift his left foot.

We’re managing well. Our humor can get a little dark at times but we laugh. We don’t know exactly what we’re facing but really who does? One day at a time. On your mark, get ready, get set…

In Sickness and in Health

Things are coming together for better or worse. The neurology appointment went well. Hubby asked a lot of questions and received very informative answers.

He is facing a lumbar puncture but there’s not a huge hurry. Doc said if it was concerning, he would press to have it scheduled soon. For now we will see how his knee treatment helps and schedule the LP in about a month or so. IF it confirms MS, he most likely has Primary Progressive MS (PPMS). Doc drew on his white board and showed that hubby’s symptoms indicate he is very low on the progression. If MS is confirmed he will recommend treatments.

I am beginning to organize a bit. He is willing to have a walker for doctor appointments but is unwilling to consider a shower chair for now. We can borrow a walker. The Hurrycane with the flashlight was a no go. I feel it’s more stable than the stick he’s using presently, but he’ll come around. He’s a bit like my grandfather that way. He’ll mull it over and when it’s in his own timing he’ll agree to it.

I will fill out the form for the handicap parking placard and drop it off Monday for our PCP to finish. Apparently I can take it to the Town Hall to receive the placard. I’m also getting Senior Services for the town to come in and put in a porch rail. We’ll have someone come over Tuesday to give us an idea of what can be done. We only pay for parts and have the option to donate to the program. I love that we have services for seniors that we can call upon if needed.

Again we wait but it’s not urgent. We can allow his knee to heal and see if that makes a difference in his ability to walk somewhat normally or at least with much less pain. I am feeling more positive. We talk things out. I will try not to go full steam ahead. One day at a time.

He still says he didn’t mean for this to happen and it’s not fair to me. I reminded him once again of our vows taken in 2016…in sickness and in health for better or for worse.

Grieving

We had a lovely time at Christmas and I was able to get to church for the pageant. It lifted my spirits. We had fun with the little ones and I was able to speak to my family back home.

Since Christmas hubby has had his first gel injection for his knee. He will have two more soon. It should help lessen the pain so he can walk again. He also had his repeat MRIs of his neck and brain. When we saw his PCP today he had the report. There are no new lesions but Doc said it looks like MS and be prepared in case the neurologist wants to do a lumbar puncture.

It’s starting to sink in for us both. I have had moments when I just want to blubber. I haven’t yet. I believe I’m grieving. I’ve grieved many deaths but this is different. I’m grieving the fun we were having early in our young marriage. He hasn’t been to his Mom’s house since early October. We don’t go out to eat or take advantage of the small town happenings. I don’t want to go alone.

I haven’t seen my family in 19 months. Mom calls. I miss my family. I am so tired but it’s more emotional than physical. I have no problem falling asleep at night. I’m not rising early lately. One morning I slept until 9:45 a.m. That never happened before.

I’m also apprehensive. I don’t know what to expect. I imagine the neurologist will give us some resources. First we need to know what type of MS it is after the official diagnosis. Hopefully there is treatment. He’s 67 and there’s not a lot of information online about those diagnosed after age 50. We’re on the easternmost part of the island and the closest support group is more than an hour away by interstate. It’s a 30 minute drive to get to the interstate.

Do I need to get a walker? Will we need a handicap ramp? We’ll need to remodel the bathroom to have a step-in shower with safety rails rather than a tub. If a wheelchair is in the future I’ll need to measure for the proper width to get in and out of the house. My head is spinning.

I’ve loved this man since I was 21 years old. We had a gap of more than 30 years before we reconnected. I’m not leaving him. That’s not in my DNA.

I’m hopeful the knee will improve enough that we can drive south to see family. We just can’t make plans.

I miss my husband being healthy and having fun together. I miss my family and don’t know when I’ll be able to see them again. I have no one here to help unless someone from church can when I need the extra hand.

In the meantime we await answers. Still.

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.