Sunday Stroke Survival: A Whirlwind of Doctors

 The last two weeks has been a whirlwind (think tornado) of doctor visits and tests. 

First up was my new Endocrinologist (finally!). He's the old, country doctor sort, and handpicked by me. While he didn't really know that much about Hashimoto's disease, he welcomed the challenge. I imagine he'll be doing a whole lot of research between this appointment and my next one. Yes, he's that type of doctor. Meanwhile he listened intently to what I knew and symptoms I was experienced. He reviewed my blood work and scans. He ordered more like a scan of my lymph nodes which were enlarged also. He basically followed my other endocrinologist's recommendations and treatment plan until he could find out more. He wrote down the information about from the specialist in CA. At this point, I knew I had chosen this doctor well. No god-complex in this doctor at all. I left the office feeling good about my choice.

Next up was my neurologist for Botox. Another finally. The Botox was all but gone from my arm and leg, but unlike before I actually made positive gains in therapy unlike the past four years. I can now, so long as the Botox is working, almost straighten my elbow voluntarily, and I can stand up without my AFO so long as I place my foot in proper alignment fist. It's the first time since 2016 I've been able to do this. Unfortunately, it doesn't work this way when the spasticity is at full force yet. We discussed changing my blood thinner to something "weaker." He said that there wasn't any. But since I was still having small strokes in spite of the Plavix, he was more inclined to increase it rather than decrease it. I had the neurologist's office call in a prescription for PT and OT to start again in around in a week. This is the first outpatient therapy center that takes a month to get into.

Next up was my cardiologist.  After reading the EKG, he determined that the fluid retention was indeed caused by my heart. He wants to schedule another nuclear study to confirm. I scheduled it for two weeks. I posed the same question to him about my Plavix. He agreed with my neurologist. 

Okay, that's two votes against my changing blood thinners. Now both specialists said if I could take aspirin... but I'm allergic to aspirin. I also know if the nuclear study shows what I suspect, then the subject of valve replacement surgery or heart transplant will come up again. Then I'll have to go through my reasoning as to why I won't have either with this doctor. What I don't understand is why the valves could have gotten worse. I have no high blood pressure nor rapid heart rates to aggravate my condition. I guess time has finally caught up with me. It's only 6-15 years past normal outcome predictions. In hindsight, not too shoddy but I'm the Queen of Abby Normal. All hail the queen!

Lastly, my PCP. I asked my PCP at his "interview" appointment did he love his mother? He said he did. Okay then, when I say a "good doctor" I mean a doctor that will listen and treat me as if I was his mother. I've actually seen him more than my "ologists" because the insurance gods require a follow up after a hospital stay or visit. I need a referral to a good orthopedist. With the renewed movement of my shoulder after Botox, my old Rotator cuff tear or maybe a new one is acting up and is quite painful in OT and at home. Considering my PCP was a roll of the dice, I like him.

Well, I guess my PCP wasn't the last and then there's all the testing. So, it begins or it continues. Sigh!

Nothing is impossible.

Sunday Stroke Survival: Holding Patterns

Right now, I'm in a holding pattern with my physical and occupational therapies. I quit showing positive gains and started losing ground as my Botox waned. I've stopped the appointment until a week after I get my next round of shots in two weeks. I found at my last sessions that I was getting more frustrated because of the back sliding progress. Better to save the billable hours with Medicare and my supplement on forward progress than waste them on frustration. In a perfect world I wouldn't have to pick and choose, but we all know this ain't a perfect world.

So, what am I doing with three extra hours a week not spoken for? I'll be pouring them into crafting projects. I've kind of pit them on hold while waiting for us to move. So much so that I even bought a plastic drawer storage container to hold it all. I had to buy another dual temp glue gun after the mini glue gun dropped a 2" piece of hot glue on my leg resulting in a 2nd degree burn just above my right knee.

While waiting for it and the longer, dual temp glue sticks to arrive My youngest granddaughter shopped at the nearest Dollar Tree for future items I'd need for my year-long crafting project plus Christmas for my huge family throng. I ended up buying a second set of storage drawers to keep it all tidy and organized. 

I'm currently looking for a folding card table to use for my battery powered sewing machine/ crafting table for the new house whenever we do move. My 600 sq ft apartment will be replaced with a master bedroom suite at about less than three-quarters the space, but that's okay because I have so little personal stuff. The craft/sewing table will fit between the wall and the side of the bed that I don't use. A queen-sized bed is way too big of a bed for me and one cat. Although it is comfortable.

So. I'm not wasting time twiddling my thumb. As for packing to move, that's not an issue. You see I've basically never unpacked since I've moved here a year ago. My clothes were packed in two large totes. One had warm weather clothes and the other was cold. I simply unpacked and repacked each tote as the seasons changed. The kitchen is another story. That will take about an hour separating my stuff from theirs. All the rest is still packed up from my move here. The rest of the house is the kids' domain. I don't what goes with us or stays. But I'll help them if they sort it.

For now, we are waiting on our seller and closing. Hopefully, it will be before the counterparts for this house.

Nothing is impossible. 

 Have you been searching for a blog post from me for the past few months and found nothing?! 

 TADA! HERE I AM!

Yep! I was MIA for the past several months. I've been found by a few of you long time readers who sent emails checking up on me. So, I thought I'd post a few pixels here to let y'all know I'm still alive.

The truth is that my Hashimoto's disease has been kicking my hinny. Coupled with the exhaustion that plagues me there's a new (or new to me) side to this disease that has cropped up... spontaneous nosebleeds. While aggravating to most who suffer with them, it has a serious component for us folks living post stroke. We are all on some kind of blood thinner to help prevent a subsequent stroke. Therein lies the problem.  My first nosebleed I stood up from my desk intent on going to the bathroom. It took almost an hour to get control of it and stop it.

I wasn't so fortunate with the second one a couple weeks later. I awoke from a nap and started pouring blood from my left nostril. Every place I stopped and had to let loose of my nose, I left a sizeable puddle of blood (about 1/4 cup). By the bathroom sink where I grabbed a couple hand towels, by the freezer where I pulled out the ice pack, and final stop in front of my transport chair. At this last stop I couldn't contain the blood within the hand towel anymore and grabbed another clean one. It was pouring straight from my mouth into the floor. My shirt, bra, and both towels were totally soaked through when I texted my daughter, "HELP!" She came through the two doors separating her room and mine at a run. She'd just come in from work.

She tossed me a roll of paper towels as she went to the bathroom for a towel. I looked into her eyes pleading. "Hospital?" I nodded. There was at least a pint of blood on various floors and towels. One granddaughter was just getting home from school, and the other one was coming home to do laundry and get help with her Anatomy & Phys studying. Both were brought up short by the sight of their momma wheeling their grandmama out front door covered in a bloody bath towel. My daughter and one of my granddaughters helped me into the car. 

We only live 1 and a 1/2 miles from the nearest hospital, but in that time. I'd covered most of the bath towel in blood. A hospital worker chased after us with masks, and then realized I couldn't wear one. My daughter donned hers. I tried to check in but was immediately wheeled into the fast-track side. My daughter went to move the car and I was alone with blood pouring out of my mouth, through the towel, and onto the floor as I tried to answer their questions. Their voices were getting farther and farther away. "Stay with me. Open your eyes." Then my daughter was there. I could hear her but couldn't talk to her. She even used my given name. She knew how much I hated that, but I couldn't reprimand her.

My body was lifted onto a stretcher, and I was wheeled to the real ER. I watched the whole scene from somewhere else. I could hear everything being said around me. Having worked emergency medicine prior, I knew I was circling the drain. They tried to start an IV of fluids and blood. The doctor called for an intubation kit, and then I was back fighting them all off. They had packed off my left nostril to try to stop the bleeding which it marginally did, but blood still trickled down the back of my throat. I'd cough it up and spit it out from time to time. They'd estimated I'd lost a little over two pints of blood. I was admitted.

Three days later, I was whisked away to have my nostril cauterized. The ENT said he burned off the usual suspects and repacked my nose. In other words, he couldn't find the exact veins that were bleeding. The trickle of blood down the back of my throat slowed but didn't stop totally. each morning I awoke with a film of it on the roof of my mouth. I was discharged home a couple days later. That was the end of January. The first week in February, the ENT pulled the packing out-- all 18" of it. I started back on my blood thinners a week later and waited for the next nosebleed. It took a month for the blood tinged mucous and blood clots to stop coming out, but it's stopped for now. Until the next time.

I'm just curious. What would you do? Not taking blood thinners supposedly increases your chances of having another stroke by 75% or roll the dice and don't take your blood thinners in case of nose bleeds. Chance the nosebleeds and take the blood thinners, or chance another stroke?

I got on my Plavix and bought a humidifier. I also squirted Oceans nasal spray up my nose twice a day. I'm doing everything I can think of to head off another nosebleed if I can.

My heart is another issue. My ankles are swelling, and waistline is holding fluid. A lot of fluid. My weight can fluctuate between 10lbs and 30lbs per day. It can make breathing rather difficult. So, I'm stuck in this sedentary life, and I don't like it at all. I hardly recognize myself. So, I haven't been blogging. I really haven't done much of anything except trying to heal and get my strength back. But at least I've touched bases with y'all.

Nothing is impossible.