Today was the day for a couple of quick errands. I drove my low mileage 2010 car down the North Road and was a block from my first destination when the car started losing power and the yellow wrench light came on. Luckily, the light ahead was turning red and the car restarted. I finished chore number one and then continued on to my next destination. There were no further problems.
Here’s the thing: hubby has a lumbar puncture Tuesday. The neurologist does these at his office one hour away. He does not do them at the much closer office, nor does he do them at the hospital where he admitted my husband in late September. That would have been too convenient considering hubby can barely walk and we do not have a handicap ramp at home. We manage with God’s help to get hubby in and out of the house safely.
Hubby’s sister and brother-in-law both have vehicles that are too high for hubby to get into. His youngest sister lives farther away, but she and her husband will drop off their spare car for us to use. It’s such a blessing. Hubby and I were both misty eyed.
I’ve dealt with a lot during this pandemic. I’ve done most of the work here for the past two years. Hubby can still dress and feed himself. He cannot walk without a rollator. I do the rest. I also had to deal with mice, thankfully just two. There have been leaks in the cellar, a dead car battery, juggling doctor appointments, nurse visits and home PT appointments. I’m exhausted physically, mentally and emotionally. I haven’t had a haircut since February. I haven’t seen my family in more than two years. Hubby hasn’t been to his Mom’s house in 13 months.
I’m not in the spirit for Christmas. I do realize the real meaning of Christmas. Church is viewed online. With registration I could drive to the barn by the church and listen to the live service via FM radio in my car. The thought of putting up the tree alone for the third straight year is not something I look forward to. Christmas will be virtual, though I may bring his Mom here so she can see her grandkids on the television and talk to them.
I’m having a pity party. I’m not the one who can’t walk. I’m not the one who without the ability to touch. I don’t have to depend on my spouse to do nearly everything for me. I do have the brain fog because my brain is tired.
I pray we have a diagnosis in the next couple of weeks so we can move forward. I just need Murphy to leave us alone so we can deal with one crisis at a time. I just want to cry.
It’s been a rough day. Humidity rolled in today and hubby’s in pain and very weak.
Hubby still has home PT following his hospital stay. The schedule got messed up so he was due to have three straight days of therapy this week. He canceled for today and his therapist was totally understanding. She said it’s a lot to have it even two days in a row. She is terrific. She works him hard and says the muscles are responding. He was able to walk 45 feet with the rollator until his left foot gave out. I work with him also but I may just pick it up again tomorrow and give him a day off.
I feel very stressed. I feel I can deal with the MS if that’s what it is. He’ll have the lumbar puncture the week of Thanksgiving.
The added stress is from the pandemic. We’ve been sheltering since late March. Groceries are delivered. I go out only for appointments or to pick up a few necessary items. With the change in season, I am losing my tractor therapy until Spring.
This is a small town. Both main roads are two lanes. The big town is more than 15 miles away. It’s not that big of a town but it is by comparison. There are political “parades” where folks drive more than an hour into our small villages and tie up traffic. They begin their “parades” in towns that have six to eight lane highways. We are still in pumpkin season where people drive from NYC for pumpkins. Tourist season began early due to the pandemic. This means it’s dangerous to make a left turn out of the driveway or onto a main road. I refer to it as right turn season. We’ve been doing this for at least six months. I’m ready to get back to some peace and quiet and have some freedom to visit my mother-in-law on a day when we don’t have appointments going on.
I still have to put patio things away for winter and prepare the tractor. I’m tired. I am so very tired. I want to cry.
Tomorrow we go to the bigger town for an appointment and possibly get to Costco to pick up a prescription. Maybe I’ll break bad and pick up something for dinner so I don’t have to cook tomorrow.
Sorry for the rant. Thank you for reading.
Hubby is facing a probable diagnosis of Multiple Sclerosis (late onset). He was in the hospital recently for steroid infusions. This has taken away his pain! He has stiffness but the pain which used to be an 8 or 9 every single day is gone. Steroids may work up to six months, so we’re encouraged.
We have Home Health check his vitals and he has two visits remaining for next week. He’ll have home PT for three weeks.
For two months he has been unable to command his left leg to lift. He could once in a while lift the foot or wiggle a toe. He was feeling so well today he got a little spunky and wanted to see if he could use the walker. I had the wheelchair right behind him just in case. HE WALKED! He walked “normally” for several steps, about 15 feet, before his left foot started to drag. He hasn’t walked that well, albeit a short distance, for at least six months!! I was nearly in tears and so was he.
He’s curious now if he can walk down the porch without my assistance for our trip to neurology on Monday. We’ll be very, very careful. I’m sure a lumbar puncture is the next step but at least his pain is gone and the hour-long trip for the test would be less taxing on us both.
We are encouraged. These are small steps but they are small steps forward for a change.
Perhaps the weather is affecting my mood. It’s been a rainy few days and today is cloudy and cool.
I suppose the cooler weather is better for Hubby. Last night the humidity came through and he needed help getting into bed. He did not have enough strength to stand. He sees his PCP in less than a week. If PCP agrees with neurology I will call to have Hubby scheduled for inpatient treatment to reduce the inflammation in his body. I pray this helps.
I did speak to my son twice yesterday, the second time was a family Zoom meeting. I may ship his birthday present to his temporary location. I miss him so much. I miss my entire family. We just cannot travel right now. We may never be able to have a long drive together again. If all else fails perhaps Hubby can stay with one of his kids for a week but neither currently has a first floor bedroom. One is trying to get a new house that would work out well but it has a hiccup caused by the current owner so they haven’t yet closed the deal. That house is one level. His other adult child only has a half bath on the first floor.
I see barriers now that I overlooked most of my life. I moved things around in Hubby’s office so his printer can be accessed without his having to stand and take a chance on falling. I may get extended hinges for the bathroom door which would allow for the doorway to be about two inches wider. We’re still working things out as we continue to wait for a diagnosis. It’s frustrating and I am tired. I’m a caregiver who has no help nearby. We’ve been playing this song for two years now.
I suppose the next step in determining a diagnosis will be a lumbar puncture. It would be wonderful if that could be done while he’s in the hospital.
That’s what’s going on with this funk. I need a nap or something. I feel discouraged. Sometimes I feel invisible. Hubby is so sweet. He wants to help but cannot. He says it’s not fair to me. He wants to be able to do something fun again. We’ve only been married four years.
If Hubby indeed has multiple sclerosis at this stage in his life it is most likely Primary Progressive MS. Christmas Day, he walked. He walked like he was drunk but he walked. By February he was using a walker. He has been somewhat stable the past two months. We could use answers, treatment and hope.
I am sad today for many reasons.
My son has a milestone birthday next month. I bought him a nice present and planned to mail it in about three weeks. It’s another birthday I am missing because hubby is unable to travel due to his health. I feel as if I’m letting my son down. He did give me the green light to remarry and move away but I thought I’d be able to visit at least twice a year.
Hubby has an undiagnosed illness. For two years the doctors have suspected he has late onset multiple sclerosis. At his last exam he could not command his leg to lift. The neurologist said, “MS does not act like that!”. The MRI reports to my untrained eye show impingement of nerves in his neck and lower spine. Either of these could explain his symptoms. He cannot walk. He has borrowed a wheelchair so he can maneuver about the house without my assistance. It seems to help. His next appointment is September 2nd. In the interim we’ve been told no news is good news. I disagree. I see a difference between the previous MRIs and the most recent. We should have received a call regardless.
I had hoped hubby would have a diagnosis and/or treatment so I could go home for a visit. It’s been more than two years now since I’ve seen my family and I have not seen my youngest sister in three years. The plan would have been for hubby to stay with his daughter so I could visit if he could not go with me. Her new house is on one level and one guest room has it’s own bathroom.
It seems now my son may not be home for his birthday. He works long hours and occasionally is called to travel. I miss him so much. I feel as though I’ve let him down too many times since his dad died. I have a bad case of Mom guilt. He was only eleven when his dad died. I was 37. I did my best but I often wonder if that was enough.
I’ll feel better later. I’m so frustrated not being able to see my family and not having answers for hubby. Today I am just sad.
It is the day after a full moon. That should have been my first clue.
Tropical storm Isaias hit Long Island early this afternoon. Hubby and I each received tornado warnings on our phones. I was prepared to dump him into the cellar stairwell or hang out in the hallway away from windows. The sky wasn’t as dark as it gets when a tornado is near. I missed being in one by about 15 minutes once in Louisiana.
Before the storm, I looked out and the remnants of the Christmas tree that fell last year were now flat on the ground. I’m thinking it’s an easy finish to that task. Wrong. We had a few small twigs fall across the back yard, then our tarp that shaded the deck broke loose and is barely connected at the far side of the deck. Oh joy. I heard a crack. A large limb fell off of the hammock tree. I heard another crack. There was a small tree across our driveway.
Hubby said it’s the kind of job he loves to do if only he had his health again. I don’t mind it so much but it tires me out when I’m also doing everything else.
Where does Murphy’s Law come in, you may ask? Due to the pandemic we have our groceries delivered. This week they are coming between 6:30-8:30 very a.m. I had no real choice but to get out my electric saw and start working on the tree around 6 p.m. Luckily it was a small tree and I managed to get 99% of it off the driveway. The small nub that remains and which I do not have the energy to move was spray painted orange so maybe the guy won’t hit it when he backs into the driveway this week.
We’re still awaiting hubby’s test results. I asked the radiologist to send us the reports. If I do not hear from the neurologist’s office by early afternoon tomorrow, I will call. Hubby has been in pain for three days. There must be an explanation on the MRIs. My patience is gone. I am tired of seeing hubby in pain and struggling. I am tired of doing everything. If hubby is never able to help me again I will keep moving forward with grace and do whatever I can to help him and maintain the house and yard. I come from sturdy stock and most of the time I really don’t mind as long as it’s on my timetable. I DO mind cooking. I really do not like it. Hubby is a great cook. He cannot stand long enough to do that.
My Pastor says to hang on to my sense of humor as I hang on to God. We have so many people praying for us both. I pray the answers come soon. It’s been two years and my patience meter broke long ago. The doctor is about to be on the receiving end of some Southern anger. Bless his heart.
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…
It’s a hot summer day. We have another leak from the bathroom into the cellar. It’s not a huge leak but I’ll call our guy.
At 8:30 this morning I received a call from the town asking if my porch rail was ever installed. I assumed it was not done because of the pandemic. We did have to wait until the ground was no longer frozen but that’s been a while. The carpenter from the town was sent over. He’s nearly completed the job. Of course the design hubby told me was not what I interpreted so he was like a dog with an old bone. I was in tears but not in front of him. He finally said as long as it’s comfortable for me. He wheeled to the door and had a better sense of the job.
He’s frustrated because he has brain fog. He can’t walk. He feels tired and weak due to the heat. The rail, the leak and everything else going wrong around here is something he would normally be able to fix himself. I’m left brained. I am very literal. He’s artistic and an engineer. I’m frustrated too.
We’re now dealing with more issues that are out of his control with the multiple sclerosis. I’m feeling a bit lost. It’s still not depression. He probably has a little of it himself, though. The next specialist appointment will be July 20.
The good in this is that he tells me he loves me and it’s from his soul. I love him with all my heart. The love part is easy. I would just like for things to go right for a change. I’m weary. I feel defeated some days. I do not like cooking. He does but is unable to cook. It’s all on me.
I miss my family immensely. My sister has surgery next week. My other sister is driving down to help. My son may also help. He’s nearby. I try not to be away from home more than an hour. We have no help with day to day issues.
Yes I have the blues. I’m physically and emotionally exhausted. We did have company this weekend. His Mom, sister and niece came by Saturday, distanced. His daughter, husband and kids came by Sunday and we were on the deck, distanced.
This pandemic just adds to the stress.
(Update: I took pictures of the final porch product and he likes the character and is satisfied that it’s comfortable for me. I’ll use a light stain on it later. It sure smells good. I love the smell of cut wood.)
Feeling a little less blue at the moment. I just need a break but by the same token so does hubby.
I’ve been feeling a bit weary of late. I believe it’s the accumulation of a pandemic, missing my family and grieving what hubby and I had in the first half of our marriage. We’ve now been married four years and we’re “elderly” according to the medical folks.
When we married, I left my home state and traveled far from my family. I miss them tremendously.
We had a rule early on. One person cooks and the other cleans the mess. It was fun. He loved to cook. I do not. I now do everything.
We used to attend free summer concerts in town, parades and festivals. Sometimes we would go to one of the many beaches and do a little clamming. We sailed or at least spent time on the boat relaxing. We visited his Mom once a week. We also attended holiday dinners with family. We traveled so I could see family. I’ve been home twice in three years. When hubby went home with me in 2018 he was in constant pain and apologized to Mom. She understood. She said Pop was in constant pain. We still do not have a diagnosis. He could walk back then. Hubby is now barely mobile so his big outing is sitting on the deck or seeing a doctor.
I do not regret marrying him. I love him and will do whatever I am capable of doing to help him. I have offered to cut his hair and/or trim the beard enough so it can be shaved but he has this fear of me holding something sharp so close to his carotid arteries. Can’t imagine why.
We make the effort to find something humorous in all this. Some days are more successful than others. One thing that is evident to anyone who sees us (from a safe distance) is that we are committed to one another and our love is forever.
He does not always ask for help when he needs it because he does not want to be a burden. I do not mind most days. Sometimes I’m just tired. I’m the one getting medical help now. It’s minor and something I inherited from Pop so I’m getting it taken care of. We’re both due for routine appointments in July. Our doctor left the big hospital affiliation. The best part of that is he’ll be 3 miles away instead of 17.
I’m grieving what Multiple Sclerosis or whatever it is is doing to him and to us. Once we have a proper diagnosis I can gather resources and see about how to properly modify the bathroom or have the town build a handicap ramp. I have forms for the doctor to fill out but we need the diagnosis.
We still wait. Psalm 46: Be still and KNOW I am God. God truly knows my patience meter shattered more than a year ago. Praying for answers.
Today, hubby and I celebrate our fourth wedding anniversary! It seems so much longer than four years but in a good way.
More than half our marriage has been this journey of progressive symptoms for which we have no official diagnosis. It could be Primary Progressive MS. One specialist believes it’s Mixed Connective Tissue Disorder. He sees his PCP and Rheumatologist next month. His PCP will read him the riot act. I won’t say a word. I believe after he sees the rheumatologist he’ll decide to proceed with the lumbar puncture. I really hope so.
Walking with the rollator is difficult most days. He’s in a great deal of pain most days but he doesn’t always voice it. Before Christmas he was using a walking stick but mostly outdoors. He bought the rollator in January of this year. Sometimes he gets halfway down the hall and asks me to push him.
He wonders about his life expectancy. I read where those diagnosed as having late onset MS progressed faster toward disability and have maybe ten years from diagnosis. I did not tell him about this. He had already read other articles regarding life expectancy.
He told me about a fellow boater at the local marina. He said this man was his same age and the only other person he’s known who went from fit to frail practically overnight. The man died nearly three years ago. The obituary suggested donations to the MS Society. My heart sank. This man died at age 63.
I don’t know what the future holds but we’re going to face this together. I have not heard back from the hospital regarding their support group. I’m going to need emotional support and also resources. Resources will be easier once we have an official diagnosis.
We’re still very happy after the first four years, so here’s to four more and many many more!