Sad

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.

Getting Murphied

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.

Singing the Blues

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.

Weary

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.

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.

Peaceful Sunday

It’s a beautiful day today. It began a bit chilly for this time of year but later warmed up long enough to enjoy the yard and grill a couple of burgers.

Hubby had another good Sunday. He was walking very well this morning with a mobility device. The smile on his face was priceless! He’s a bit sleepy now so he’ll go to bed early.

I left him to his own devices for a while. We needed coffee and our favorite ground coffee is not carried by Peapod. We will receive our fourth grocery home delivery tomorrow afternoon. It’s an extra layer of protection against the pandemic.

I donned my mask and went for the coffee. It was on sale! I then filled up the gas tank and followed a shiny object for about ten miles. I was going to call hubby that I’d be delayed but getting to the telephone would not have been easy for him. Calling his cell would have been wasted effort.

My shiny object ended at a nursery. Hanging baskets were on sale and I bought two. Hubby put up a watering system on the deck two years ago. I now have two nozzles not being used so I may buy herbs for the deck rail. I put a bucket under one nozzle and I use the water to fill the redneck birdbath. After three years, the birds are splashing about in it!

I love our birds. We have woodpeckers, nuthatches, chickadees, cardinals, blue jays, red-winged black birds, song sparrows, robins and even osprey.

I may go for more yard therapy tomorrow if the weather holds. I can take my time and get most of the yard debris out to the road before the town picks it up in about two weeks. It’s a huge feeling of accomplishment.

It’s something I can control. I can’t control what’s happening to my husband. I wish I could. We try to keep our humor going. We are in this together wherever it takes us. It would be nice to just get out on the deck for a little while. He’s trying so hard not to let MS take over his spirit. I try to encourage him and sometimes give him a hard time to make him laugh.

Today I am thankful for a beautiful day, my gentle soul of a husband, a great family, great friends and good health.

Rice Krispie Kind of Day

I LOVE tractor therapy. It must be genetic. Mom and Grandma both preferred working outdoors. I’m paying for it today because both shoulders hurt and I was stabbed by a branch on the downed tree which has resulted in a bruised thigh. I’m at the Rice Krispie stage of life because everything goes snap, crackle, pop!

We have an acre, complicated by a downed Christmas tree and two locust trees. The locust trees are at the back line. I can get around them a bit but I need to clear some smaller branches. The Christmas tree is in the middle of the yard. At some point we’ll hire someone to cut it up and haul it away.

There’s so much to do that hubby would do if he could. I get the sense these things aren’t currently scheduled with a pro because he’s not yet ready to believe he may have MS. Something is going on and it’s progressing. I believe it’s a form of MS. Earlier in the week he was getting ready for bed and could not remember how to remove his shirt. Brain fog. That spooked us both. After he went to bed I cried. Just what are we facing? He apologizes all the time. I tell him there’s no need. Next month we’re celebrating our fourth anniversary.

One new medication addresses the neuralgia in his hands. He’d love to write without pain or pick up the guitar again and play. He’s a singer/songwriter. I suppose he’s considered a professional now since a British movie producer wanted one of his songs for a film. It’s Bruno (2020) and the song is just before the credits. The film has been released in Europe and appeared in a couple of film festivals over there before the pandemic turned the world upside down.

We’ve been living a new normal for about two years now. Staying indoors is nothing new. We use a grocery delivery service now so I don’t have to go into the stores. It’s also tourist season in this small town with two lane roads so it’s even more difficult to find essential groceries. It’s safer and less stress to order it. I’m all for less stress. It helps him to do the shopping online.

Time to fix dinner. It’s not my favorite thing to do. Again, it’s genetic. I’d rather work outdoors.

Ya’ll have a great weekend. We’ll get through this. Stay safe. Stay healthy. God bless!

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.

Oh, Baby!

Earlier this week hubby’s baby girl gave birth to her own baby girl. Mother, daddy, baby and big brother are doing well. It’s a bit odd that her daddy was born during a hurricane, her parents were married just after Hurricane Sandy and had to change both venues within three days. Big brother was born after the Zika outbreak and baby girl was born during this pandemic. I’m sensing a pattern.

She is healthy and adorable. Her name was changed once they saw her. She has a head full of black hair so they went with their second choice of name. Did I say she’s adorable? I don’t know when we’ll be able to see her in person but we can’t wait. They live in another state and Grandpa doesn’t travel well nor does he climb stairs. Their stairs are steep and slick going to the second floor. We’ll be able to see her on social media video.

I’m still doing Zoom with my family and I love it!! I’m amused by my sister’s cats in the background and my son’s antics where he is.

It’s just so nice to have something uplifting to push away the moments of dread.

Let’s take the blessings when they come.