My Turn for Health Problems

Lately, I have been the one with health issues…poison ivy, dermatology and serious issues with my knee while still providing 24/7 care for my husband.

Since late May, I have been in constant pain. I don’t notice pain when I am asleep. I ice it and elevate it.

I have had two x-rays, two ultrasounds, NSAIDs, steroid injection (can’t have another until late August), oral steroids and a Baker’s cyst drained of thick, pink fluid. If it’s pink, it denotes blood/trauma.

The insurance company is denying authorization. The surgeon did a Peer to Peer review which was denied. The insurance “Doctor” suggested an appeal. My surgeon is doing that and marking it urgent.

In the meantime, I had to cancel my MRI appointment for two days from now. Now I wait AGAIN.

I am in tears. If they don’t authorize the MRI, what the heck is next?? I honestly hope that the insurance people do not have to be in 24/7 pain for two months or more, but maybe they’d show more compassion.

Good news is hubby is on the list for CAR T-cell therapy. It should be available near here by the end of the year. It is supposed to re-train the T-cells not to attack good cells and to repair myelin. Maybe hubby will be able to regain use of his hands and perhaps walk again.

Maybe I can see my Mom (almost 94 years old) before her time on earth is done. It’s been five years.

Oh The Blues

I have a bad case of the blues. My therapist is aware.

My Uncle William passed away at the age of 91. He was Mom’s last surviving brother. He’ll be missed.

It makes me sad. I cannot get down there to see family and grieve together. We can drive down, but getting into either house to visit is not possible. I have tried checking into short term care so I can take a week off, but I’m striking out. There are drawbacks to living in a small town.

I am continuing with therapy. He feels I am handling the ordeal with the intruder very well, with a take charge mind set.

Dealing with MS is another matter. While he is healthy today (MS normal), I am awaiting the other shoe to drop. I told Hubby about it and he feels the same way. Losing me would break his heart and he would no longer have someone who knows and loves him being his caregiver.

I still need a break. I am working outdoors some days. When the mower brakes arrive, our handy guy will come over and replace the belt and brakes for us. Hopefully, that is the end of the tractor issues.

The shoulder is better after an injection. Next week, I will have the first gel injection of my knee. I pray that helps.

New windows will be installed in about two months. Painting the house exterior may have to wait until spring. We’ll also have the driveway re-paved. That should take care of things for a while. I am expecting a call from the MS Navigator on Monday about getting help covering the cost of a split adjustable bed with mattress.

Fun with MS.

Health, Crime and Hope

The past few months have been crazy.

Our flooded mess of a basement is now healthy, clean and usable as a living space. What a blessing.

Hubby was hospitalized four times from the end of March through the first week of June. He was septic at least twice and nearly died. He’s finally stable. It’s been a month since his last admission.

I am still dealing with PTSD, a bad shoulder and a bad knee. Fun times. So much for the golden years.

The felon in our case (who came to this house at least twice), was paroled today. I was shaken. I decided to check out the DHS Vine site and registered for phone notifications. If there is any change in his status, I will be notified. He’s officially listed as being in ICE custody.

Things are beginning to look up. We’re excited to get things done around here to beautify the space and to get things organized.

To know the felon is no longer on the streets is a huge relief. It is also giving me permission to cry. I will see my therapist Thursday. It should be an interesting session.

I Just Can’t…

So much has happened since Christmas and I’m ready for a break.

There were multiple delays on getting the house repaired. The bathroom is finally fixed and they will return next week to continue working on the basement.

Where to start…I had a call from the District Attorney’s office about our perp/perv. As it turns out, they lumped our case in with the other family’s felony case. He pleaded guilty to the charges in our case and was sentenced as a lump sum to 1-3 years in prison. I was NEVER informed of this. If he is denied early release in May, he will be released in September 2026. Our order of protection is good until April 2029. Our order of protection is no longer “temporary” so I’ve asked for a new copy. IF he’s here illegally, I imagine he will be deported. I really don’t know his status.

I began seeing a psychotherapist (no shame in getting mental health addressed, people). We are early in this, so I’ll be updating him Thursday if I can get a ride to my appointment. That leads me to…

My car’s brakes began grinding and the engine light is solid. Our mechanic was not open Friday so I’ll call Monday. To have a vehicle, I went out to check the tires on our wheelchair van. I had a brain fart and tried to back it up with the driver’s door open. The tree stopped that. I can close the door, but it’s open at the top. I have it secured for the upcoming snow and will take it in on Monday for an estimate. If it’s a quick fix, they’ll take care of it then. If not, I’ll get it scheduled.

I want to cry. My shoulder has been hurting nearly non-stop since late November. I cannot receive more injections until late June. It feels fractured, but it’s arthritis and a shoulder impingement. I cannot take a break since I have no help and Hubby requires almost total care. He has his mind. His legs are paralyzed. He cannot feel his hands. He is in pain during the night. Sometimes I have to feed him due to his not having control of his hands on a particular day.

My last break was August 2021. My little Sis came by train for a brief visit. My son came by in October since he was temporarily working upstate.

I speak with my family on Zoom once a week.

The re-fi for the house should be done soon and we can get railings for the patio, desperately needed windows and perhaps the driveway done since it’s cracking. We hope to have a painting party in the spring to put on a new coat of paint (not done in 20 years). The interior needs, not wants, will have to wait a while.

I have hit a wall and I keep trying to push forward. I’m 70 years old. I am in constant pain. I don’t have a chance to sleep during the night due to Hubby needing to be turned. Sometimes I can catch a nap during the day, but not always.

It’s just one straw too many.

I really hate Multiple Sclerosis!!! It is evil. It has stolen so much from Hubby and I have to pick up the slack.

Now to get ready for more snow. They say 1-3 inches, but I’ll rely on the “look out the window” method of forecasting.

Our Mixed Bag

We are into December already. Can’t believe time is going by so fast.

I had another terror this week but it was only about five seconds long. Someone was in our bed with his hand over my mouth and said, “Don’t scream”. I tried to scream, but it only eked out. Hubby woke me up from it. That’s the first terror in about two months.

I went downstairs last month and found water on the cellar floor in the laundry room. To shorten this just a bit, I called a plumber. He fixed the leak downstairs, but heard more water. He came upstairs and checked the bathroom in one area, but the leak was, of course, behind the tile in our new handicap bathroom. He suggested we call our contractor to remove the tile.

This is where an unexpected blessing occurred. The tile was removed and the pipes replaced with material that will not leak.

Our contractor advised us to call our insurance company after he went downstairs and found black mold…seriously bad black mold. Insurance is covering the cost of removing all the damaged items downstairs, mediating the mold, etc.

We have a blank canvas now except for the storage room. Our contractor returns this week to fix the shower and then they will concentrate on the cellar. I hope to have a lady lair down there so I can read and relax.

I did find information on an incline platform lift that may work for Hubby’s chair and get him downstairs…or an elevator, but that involves structural work. It also involves winning the lottery since the platform lift would be around $10,000.

I still have so much to do. The tree and ornaments need to come upstairs so the guys can work undisturbed down there next week.

My break is now over. I’ll get some water and then begin wrapping again. This year should be fun. We have a lighthearted theme this year.

I’ll call Ortho tomorrow about getting another injection in my shoulder so I can function.

Hubby is somewhat stable. We’re joking around again. It’s been a long time. He is worried that he’s losing more function in his right leg. He’s now 72 years old.

Over It All!

I haven’t had a break from full time caregiving since the first week of August 2021. At that time, Hubby could transfer to a manual wheelchair with help. He could roll on the bed himself. He could even make a cup of coffee without assistance.

Fast forward to 2024. He is wheelchair bound. He can wiggle his toes. He can use his hands, but has no sensation at all. He cannot tell what he touches.

It is all on me. It is all the housework, all the yard, all repairs within my skill set…everything.

I was broken yesterday because there is yet another leak in the cellar. It appears to be from the bathroom or fridge, but no water upstairs. It is all downstairs. I just can’t. I’m done.

We finally got the tractor repaired and the grass cut. He still has a health issue going on but refuses to make a doctor’s appointment.

I love him so much, but my brain is done.

I was invited to submit a victim’s impact statement against our “suspect”. Our case has not yet been heard, but he pleaded down to a third degree felony burglary in another case and was sentenced to 1-3 years. Due to time served, he was eligible for release in September. He has not been in prison custody long enough to have the early release interview. He is upstate now.

I am in such need of a break and I do not know how that is possible. He is completely dependent on someone taking care of nearly every single need.

I am exhausted. I am probably in a depression but not too bad. I will keep an eye on it.

This is not fair to either of us. He feels he is dying, but not necessarily in the near future. He has his mind. We love each other so much.

I am just in need of a break.

Am I Special?

A little background for this title.

Yesterday afternoon, Hubby made the decision to go to the ER. That is HUGE. He was feeling “off”. He was sick to his stomach and felt clammy. He also thought he was reaching for a cup on his lap that was not there.

We were at the ER for about seven hours. He had two CT scans; one to rule out a stroke and one to check his kidneys. They ran a ton of labs. They were told of the MS diagnosis, but we’re at the point where we do not know what is MS related or what is “normal” sickness.

He is paralyzed. His Hoyer sling was still in his wheelchair. The staff brought in a Hoyer lift to get him on the bed.

I was asked many times by the nursing staff and the Nurse Practitioner if I have help at home. I told them I do not. They were amazed that I dress him, put him in the sling and transfer him to and from the wheelchair by myself.

I do not find that unusual. I am southern tough. I do what needs to be done. I am also tired. When asked why I do not have Home Health, I explained that they either do not come this far east, do not take our insurance or they are understaffed.

So, does that make me special because I do what needs to be done for my husband? I love him and he loves me.

He heard someone singing, “God Bless the Broken Road” and he had tears. He said he would sing that for me. He said he would write so many songs for me if he could. He can barely hold the guitar these days. He can barely write. This is especially cruel for a singer/songwriter.

We still take one day at a time. I was amazingly calm at the ER. My sister-in-law came in around 8 p.m. and kept me company.

We were exhausted when we finally got home and he had a rough night, but this entire day has been wonderful.

I thank God for my husband, my family and extended family and friends. MS is a royal pain where a pill cannot reach, but it will NOT kill our love.

Legal Limbo

Believe it or not, the felony case is still active. The next date for that family is Dec 13, 2023. Our case is in discovery and I should hear from the defense attorney on that. Just knowing he will call or email triggered me.

My husband is paralyzed. I stay up longer than he does and I will roll him to his right and from there, he can hold me. That’s the only way we can hold one another. I feel safe.

I keep my phone nearby and the security camera will ping at the least little thing. Hubby says he’ll keep watch and listen for any odd sounds. He normally cat naps, but I asked him not to avoid sleep because of me. I have my bat and two phones.

Our perpetrator is in custody. The house is secure. I have not had as many anxiety attacks the past week. It had gotten so bad, my sister suggested EMDR. I may still look into that since this is not my first trauma. I have not dealt with any of them and that is not a good thing.

My sweetie is watching television right now. His main complaint today is a great deal of difficulty using his hands.

He wonders why I love him and put up with him. I fell in love with him in 1976. We found one another again in 2009 and married in 2016. I bought him a travel mug for Christmas…”You’re the best thing I ever found on the internet”. How true.

All in all, today is a good day. I have a lot of shoulder pain, but I am doing well.

I am ready to get my mental health moving in the proper direction and getting the court business behind me. For that to happen, the court business must begin in our case.

Oy!

Terrified

I am not thinking logically. I am terrified of someone who invaded our home, but was not armed as far as we know. I chased him out of our house that night.

He is in custody about an hour’s drive from here. I am to be notified by three different ways if for any reason he leaves custody.

Our ADA was to meet with his lawyer in court on October 20, 2023. I have not yet heard an update on that. The other family has a felony case against him and that next appearance is Oct 26, 2023.

I have cameras. I have locks. The two back doors are locked and the two front doors are locked. Windows are closed. Family can no longer just walk in. It shocks them a little, but they understand.

My second cousin died in a tent fire yesterday. I had not seen him in decades. He was homeless and kept returning to the land where his family once lived. He had some mental health issues. People tried to help him. They really did.

Yes, I am also trying to process my husband’s MS. I just could not adult today.

I went to the store for elastic. They did not have any, but I found other items I needed. I then went for kitty therapy at the local shelter. That did a world of good. The one that was craving my attention would swipe or growl at any cat that came remotely close to me. This kitty would not be a good fit in our home, but she was very sweet to me. We may not be able to have another cat with everything else going on. It is a sad thing.

Perhaps I ended counseling just a little soon. She said it could very well be PTSD due to other trauma in my life.

I want some sense of normalcy and happiness again. My chest is tight right now. If you pray, please include me. I am NOT a danger to myself, but I do need a mental vacation.

Steps Forward

We received a Hoyer lift through the MS Society. Hubby has been hesitant to transfer to the shower chair with it until today.

We did very well. Hubby had his first real shower in more than 18 months. The first thing he wanted scrubbed was his hair. The hot water did not exacerbate his condition. He’s been talking about that shower all day long. It beats the sponge baths. I am so happy for him.

We also heard from the Victim’s Advocate. The suspect in our case will be in court on a felony charge against another family soon. The suspect will have a court proceeding in our case on Oct 20, 2023. I suppose that is when they will decide if there will be a plea deal or if a trial date will be scheduled.

IF this goes to trial in our case, I can have the victim’s advocate with me. I may also take my husband or pastor along. It’s a small court room.

With counseling, I am much better. I am less anxious. I am less terrified. I have not had a nightmare in several days. I am still angry and I would like some answers. He was not armed when he was arrested.

I will choose to live my life being careful, but not captive to fear. I want this done. If convicted, I hope he gets the maximum sentences available under the laws of this state.