Tractor Therapy

I have been waiting for decent weather so I could mow our little acre. I call it tractor therapy. Today was supposed to be in the low 50’s and little wind. Just as I was about to go out, the wind started up. It was howling like a ghost on Scooby Doo. When I could stand it no longer, I went out.

The lawn could not have waited any longer and I needed to get OUT! Since the pandemic began I only go out for groceries to keep our risk as low as possible due to our ages and hubby’s MS.

It felt so good to be outside for that amount of time. It took less than two hours to finish. While I had only meant to do the back yard, I finished the front yard as well. Just being on that tractor helps me feel normal. When I took over the mowing from hubby two seasons ago, I was afraid to mow the front yard. I always felt I would tip over. It no longer bothers me. It’s fun, relaxing and very satisfying. I can talk to God, sing or just mindlessly mow. I highly recommend it!

It’s a good thing I took a hot shower. My muscles are reminding me that I have not used them in that way for a very long time. Shoulders are sore from turning the steering wheel.

It’s been a better week overall. We even received yellow roses from my Mom. She said she can’t be up here to help me and she loves yellow roses. It’s how Mom says she’s thinking of us, praying for us and loving us. She’s the best.

Pandemic Anxiety

I’m having a really bad day today. I am on the verge of tears. I don’t toss and turn at night and hubby says I just don’t move. I don’t remember waking up during the night but I must be dreaming. I do not wake up rested. I am so stressed and feeling a tad fragile. I fear going to the store but they will be closed for Easter as they should be.

This is nearly an anxiety attack but on the mild side. I do have medication if needed. Heck, I have wine spritzers in the fridge.

I have so much to do. More dishes, laundry, etc. As soon as I get that done it will be time to cook dinner. It doesn’t stop until I crash into bed. Sometimes I take a nap. I need to hear less about the pandemic because it beats me down. There’s so much sickness and so much death. The youngest patient I’m aware of is a 6 week old infant. Too many people, including government leaders and ministers, are not taking this seriously. I’d love to be in church on Easter Sunday, but like the tomb, church will be empty Sunday save for 4 or 5 people recording the service. I miss my family. I’m worried about my son traveling up here for work.

If we must go through this pandemic, can we at least have spring temperatures and no winds so I can work in the yard?

For now I will dry my hair and my tears and head out with my mask and gloves. I shouldn’t be gone long. I’m just weary. On top of everything else hubby is having a painful day. I just don’t want to adult today but somebody must.

Excuse the rambling, please. I need to get this out. Thank you.

Staying at Home During Pandemic

We’ve been sheltering in place for a month now due to the COVID-19 pandemic and questions whether husband is compromised due to his MS. We are both high risk due to age and weight.

Hubby, God bless him, needs to get outside…before his body goes missing. Just kidding. He’s been cooped up here for more than a month. He is terrified that I will become ill. He’s driving me crazy over that and I’m already crazy. I am taking all the precautions I can. I try to go out only once a week for groceries. I also keep a log of any interactions outside the house.

I did take his Mom 25 miles to the bank so she could cash her monthly check. I cashed mine while we were there. Our biggest risk was inviting her into the house at a safe distance, of course. She had not seen her son in person since January. It’s a parent thing. You need to see that your baby is okay. She had never seen his rollator so we demonstrated how it converts to a transfer chair. He also got out the device that helps him put his socks on. She laughed! She loves gadgets so she may end up getting one for herself.

My youngest sister set up the family on Zoom. We’ve now had two sessions where I can see my family. I haven’t seen any of them in person since July 2018. It’s been longer since I’ve seen my youngest sister. It helps to see my Mom, son and siblings and laugh like we’re in the same room. I did see my niece and both cats.

This pandemic is very stressful. We have about 33 cases in this hamlet and 147 cases in the town with 8 deaths. The county is 86 miles long and most of the new cases are closer to New York City. We have two grocery stores nearby. I go to the one in the next town because it’s larger and therefore less close contact. The problem I have is people are grabbing up toilet paper, paper towels, soap, etc. like they are preparing for armageddon. I’ve never been able to get disinfecting wipes or hand sanitizer. I already had wipes in the house and they are getting low. I use antibacterial hand soap and wash my hands until they hurt. When that runs out I’ll use bar soap. I have a disinfectant spray cleaner for surfaces, so we should be good for a while.

I wonder how many people left the City for this rural area just to get away from the concentration of the virus? As long as they behave responsibly, no problem. It’s not yet beach weather so physical distancing should not be a problem. Heck, I’d like to drive to Town Beach and just sit in the car. I usually will go out in the yard if it’s not too cold or raining.

I feel badly for those who can’t have visitors. There’s a new great niece in the family and her grandmother can only see her through glass. My stepdaughter is due in 2 1/2 weeks. She’s in NJ. I pray God’s protection on everybody, family or stranger.

I look forward to being on the other side of this evil virus. I had a nightmare earlier this week where it had taken every single one of my loved ones. My family’s area is probably about 2-3 weeks behind NY. It’s scary. Son goes back to work at least one day next week.

It affects so many things we take for granted. My favorite uncle died March 20th. His girls have to put off having a funeral or celebration of life. It breaks my heart. Babies being born at this time cannot be held by extended family. People are dying alone.

This needs to end soon. No one else should catch it or die from it. God helps us all!

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.

Answers Soon?

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!!

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.