Medical Catchup

It has been a while since I updated what's been going on medically. So here's the skinny...

My leg is feeling much better. It feels like it was maybe inflammation that pinched a nerve or something and just took a long time to heal. My MRI came back fine and neither the sports doctor nor the rheumatologist could find a cause for my extreme sudden pain. BUT...

The rheumatologist wanted to rule out some autoimmune disease possibly going on. He ran some labs. The results were interesting. So far it didn't flag for anything specific. But it did show up positive for many different things. I have a message in to him to see if we're doing more testing, or if that's the end of it.

Is this English?

Gotta love lab results.

I've actually been feeling better energy wise and have been trying to push myself daily physically. I'm sore all the time, but I feel good about stretching my body in what I can do.

I went through two treatments of dry needling. It did help my neck and shoulders. Only during the last few days have I been having pain there again. It's almost like intense acupuncture. It lasts a lot longer than that for me and I get goldfish crackers after. I'm not sure it's worth the discomfort of the process though. 

I'm still getting my Botox for migraines every three months. However I changed my monthly injections from Amivog to Ajovy. Ajovy is supposed to be just as effective without the constipation side effects. I've only had one dose so far. But I'd have to say it works just as well as Amivog, maybe even a little bit better.

Thank goodness all the rain is done. That change in barometric pressure all the time was incredibly hard on my head. I can actually feel sharp pain where my head plates are when the weather shifts. It's not a fun experience.

The pool is back open and my mom and I had our first swim last Saturday. I love the water so much. I feel like I can do anything in it. It's so supportive. Getting out is a monster though. I feel triple my weight. I just try and go really fast. That helps.

After recently topping 293.7lbs I pumped the breaks on my eating. My all time heaviest is 297 and I got concerned being so close to it. I can feel the difference in my body a lot if I get over 280. An adult male gorilla weighs 300lbs. That's pretty big for a Vegan. And a little too close to my size for comfort. 

Yum Easter candy!

What's life without treats now and then?

Fortunately my garden is doing well and the summer produce is ready for planting. That will help me eat more vegetables. Here's my latest haul of broccolini, purple broccoli, sugar snap peas and chives.

I also have my beautiful back patio to spend time in. It has been fantastic to eat out there while the weather is springtime cool and breezy. This Friday we're doing a family dinner and breaking in the Hibachi for the first time. I'm very much looking forward to it.

Symptom wise I'm feeling the best I have felt in a very long time. My sinus infection cleared up. My leg pain is down from an 8 to a 2. My energy is the best it has been since I can remember. And it's springtime. I'm taking each day as it comes and living my best life.

Max does his part to help.

Reprieve

After my recent night of desperation I put into action some things that have been helping out my incredible pain.

1) Made a tote bag full of all my resources. Creams, gel, pills, patches. All the stuff I have for pain. Now instead of just laying in bed in pain I can grab that bag, go into the bathroom and choose something to try and relieve it.

2) I found my "stash." Back in 2020 I tried some CBD/THC products to help my pain and migraines. It worked, but I didn't like the side effects. I kept most of it and found that the high CBD low THC gummies did help my pain quite a bit. 

3) Tried something new! I found some new cream that so far helps better than any other topical product I've tried so far. All CBD. No THC.

I'm also being very watchful of my activity levels and how I use my leg. I'm trying to really be vigilant to give everything a chance to heal up. So far it still hurts, but not at all like it was. I'll take it!

Let's Leg It

My skin is doing much better. I feel very proud to have made something that helped it myself. I'm also feeling more confident and more "myself" since coloring my hair. But there's been something else going on that I haven't talked about. Leg troubles. I want to document it for myself here before I forget the details. 

In the last week of December (almost 3 months now) I woke up one day with what felt like a horrible shin splint in my right shin. It honestly felt like I had been running all night in my sleep. No injury. No trauma. It just was there. 

I tried resting it, icing it, putting a brace on it, keeping off it as much as I could. And every time I would think it was getting better I would get a sharp stabbing pain behind my kneecap and the process would start all over again. The shin splint pain changed to a radiating pain from behind my knee down to my ankle (and lately to my foot and toes.)

This cycle went on for about six weeks before I finally caved and wheeled myself to the doctor's. Sadly I couldn't get in with my usual doctor and even though the one I saw was very kind, she's not my doctor. I had x-rays done, an ultrasound and was scheduled for an MRI that's still three weeks out. 

Keeping off my leg as much as I can

But... my pain has been so intense that I messaged my regular doctor about it. He just saw me Monday. He was concerned and ordered labs and for me to see a sports doctor friend of his who knows leg anatomy like the back of his hand. Get it? Anatomy humor for you.

My labs came back mostly normal, but three indicated inflammation markers that concerned him. I had also shared with him that my immune system has been particularly off lately. Along with my complexion going to hell I've been getting hives off and on and red spots in different places. I'm managing it by taking anti-histamines and using topical hydrocortisone cream. My doctor thinks this might be connected to my knee.

The sports medicine doctor got me in to see him the very next day. He was a wonderful man who took his time with me. He examined me and agreed with my doctor that it is likely something autoimmune happening. He suggested I get a referral to see a rheumatologist. 

He explained that my leg pain sounds like it was muscular to begin with, but turned neurological over time. He expects it will go away on its own (which was a big relief to hear.) He suggested some CBD ointment. And if that doesn't help some CBD/THC ointment or/and tincture.

I appreciate how out of the box a lot of doctors think now and aren't just stuck on prescriptions. Even though he admitted I'm already taking everything he would recommend.

So that's where we are right now. My doctor suggested I take 650mg of Tylenol for Arthritis 3x a day along with Diclofenac 3x a day. (I use my prescription Diclofenac/Voltaren along with Penetrex 3x a day.) I just ordered some CBD lotion to try.

Next steps are waiting to hear back from my doctor and attending my MRI on April 4th. The thought of seeing a rheumatologist again makes me nauseous. The last time was when this all started with a bang. Sudden muscle weakness in my legs and me sobbing in the hospital parking lot. It will be hard for me to forget all of that and move forward. But pain is a good motivator!

Powering Down

 So this is a thing...

It's called Livedo Reticularis. My doctors think I developed it from my Amantadine (aka: God's Cure Pill). It came on in May after my horrid sinus infection. I think they're wrong and it's from that virus. But they wanted me to stop taking Amantadine till I can be evaluated by a Dermatologist. Insert two month wait here.

Unfortunately without my Amantadine, this happened...

No, I didn't turn into a turtle. Not even a Ninja one.

Everything became slooooooow. I'm more tired in the morning (though I am sleeping deeper). The worse of it is my muscles became about 50% weaker. It has had a huge impact on my quality of life.

It has been about 11 days now with no improvement in my legs. They get much worse if I stand or walk. Last night I messaged my doctor to see if there's anything we can do while we wait to see what the dermatologist has to say. Blood labs? Antibiotics? I'm feeling desperate.

Because I'm moving less I also hurt more. It's a mess how that works. It's also been too hot to swim this week, which STINKS! Swimming helps me feel much better.

In the meantime I'm eating more to self-sooth, which isn't really helping my body either. ACK!

This little guy always helps!

I just have to ration my spoons even more than I was before. I have about 3 spoons per day or so when I used to have 6-10. And bathing always takes at least 1. Bummer.

I'm hoping for a situation update soon!