Blessed Yule, Happy Winter Solstice

 

I thought I would pop in to wish everyone that reads my ramblings a Blessed  Yule 
and a Happy Solstice. 

I've sadly come to dislike the holidays around this time. They are just so stressful and 
overwhelming.  I'm supposed to be avoiding stress and reducing it as best as I can and then
people spring shit on you like let's do a white elephant exchange....last minute.  It's supposed 
to be something you don't want and give that as a gift. 1) I don't have anything I want to give 
away. and 2) Nobody wants my shit anyway.  None of these people share my interests.

It's bad enough that Christmas Eve is the anniversary of my dad's passing.
Then everything in the world that is going on. And the pressure to people please with gifts
you don't have the finances for. All the pressure from consumerism in general to buy this, 
buy that. Spend spend spend.  UGH!!! It sucks!

The pressure to participate in things that make me uncomfortable...(the white elephant exchange).

Can I just go hide somewhere until all of this is over?

What's New?

 Well first, New Moon Blessings and Happy (almost) Yule!

So what's new?

After two separate MRIs of my spine Upper/Mid (cervical/thoracic) and Lumbar/Sacral I still have no answers of why things hurt, tingle, feel numb, weak, etc.  Nothing is glaringly obvious. No pinched nerves or anything requiring surgery. At that point, the spine specialist saw no reason to keep me coming back and released me from her care.  Though, if things got worse or new things cropped up I could come back.

In June I was finally referred to cardiology.  Adjusting my thyroid meds did nothing to alleviate the palpitations and flutters I kept having. Anxiety at times felt like it was through the roof too.  

In July, before even seeing me I was given a 14 day heart monitor to wear. It was quite the fashion statement <cheeky grin>.  Wearing it in the heat was getting quite unbearable at the end and I couldn't wait to take it off. It made showering a challenge as well.  I didn't always click it but it also said that I didn't have to, whether I did or not things would get  recorded. Clicking it just was kind of a marker for them to look at.

There as a lot of unnecessary fiasco around getting into see the doctor. I got one appointment, then I got called to schedule an appointment. When I asked about me original one, it apparently did not exist. It vanished. Then the day before my appointment, I get a text reminder. And 15 minutes later, an irate employee that claimed to be "the only who schedules these appoints" even though I have talked to no less than 3 people prior already...insisted that there was absolutely no reason why I had to see the "actual doctor".   He was like based on your results blah blah blah. To which I told him I don't even know what my results are.  He response was "oh you JUST have tachycardia" so you don't need to see the cardiologist you're fine seeing a PA. I was so shocked, stunned, bewildered, flustered... that I didn't know how to respond. He basically bullied me into agreeing to the new appointment because he made it sound like I had no choice. 

I can advocate my ass off for anyone else. But when it comes to doing it for me, I get so anxious and scared that I can't find my words.

I finally get in to see the PA (a week later). And he is so focused on my dental issues and kept asking if I was sure I didn't do drugs.  Dude...I don't fucking do drugs.  Him: but are you sure, because dental issues like yours are indicative.... Me: NO! I don't do drugs. Never have, never will. My issues are hereditary, health related, and I'm terrified of the dentist. Just talking about it is cause my anxiety to escalate. He apologized but you could still see the suspicion/doubt.

Then he asks me about what kind of work have I done. Do I work now, why not? Would it be more prudent to me and make my life better if I went and got a job? Are you in contact with your kids? (PS He noted this shit in my chart!  Never even let me finish telling what kind of work I did in the past so it just says I worked fast food.  He'd ask me something and cut me off mid answer.)
Well Mr. PA sir, I worked in more than just fast food. I wasn't just a burger flipper.  AND I full intend to enlighten him if I see him again. He asked me if I had a college education. WTF does this have to do with my heart???

After running a couple of  tests in the office, his assessment is POTS.  Gave me a very clinic handout. Something I would expect to read if I was in med school. Told me to go home, limit my stress,  do exercise, increase my water and salt intake and come back in three months.  WTF?  All very generic answers.  OH and to start wearing compression wear.  There was no, hey look add this much salt, try drinking xx amount of water/fluids a day, look into these exercises...NOTHING. I told him I do have Fibro and exercise intolerance and he just says well do what you can within reason. ????? Is it so hard to give suggestions or recommendations? 

I talked with my primary a week later and expressed my concerns and confusion with her. She told me had to ask about the drugs because they get all kinds of people. Okay, fine, I get that...but REPEATEDLY!!!???  She told me to just walk more for exercise, drink more water and add a bit of salt to each meal.  Funny thing is, when I asked her if it might be POTS, she dismissed me and questions. But I tell her what this guy says and she's all "oh it's POTS." Like did you know all this time?

I'm supposed to see this guy again next month.  I just don't know.  She said if it's POTS he can manage it, but I'm just not sure about him. I don't know what to do. I don't feel very confident about him, not sure if I'm comfortable with him either.  He mentioned doing an ECHO and a stress test, then decided to wait until the three month visit. But surprise, he went and ordered the ECHO anyway.  To which someone put on my file something about THYMOMA. When I asked the nurse about when he called me to tell me the results, he had no idea why it was there or who charted it like that. Told me to not worry about it for now since I've never had any surgeries or anything.

When I think back over the years the symptoms have been there for a long time, just like Fibro. With the POTS though, I think having had "that virus" last  year sent it into overdrive and really made it come out. At least now though I have confirmation.

Reduce my stress...HA! That's a joke.  Besides being impossible.

Checking In

Well, it's been another hot minute or two.

Okay, okay almost 4 months.  

I'd been doing physical therapy since last September, starting with twice a week.
Then went to once a week after I recovered from C-19.

A few more hiccups that kept me from visits here and there. Like in February/March,
when my therapist ended up with Scarlet Fever. "Mom" got sick before that, and oh 
weather kept me from going also.

Finally got back to it in March, only for us to figure out that I am plateauing. I saw my
spine specialist in April, we discussed this. And at her recommendation, we decided to
put PT on hold at least until after I had a MRI of my C-spine and Thoracic spine. Sadly,
this worked out because my physical therapist was moving to a different office that is
way too far for me to travel to.

I got my results a couple of days ago. The good news is I don't have any tumors or pinched
nerves. Nothing requiring surgery. I have some degeneration, spinal stenosis, bone spurs in my 
C-spine area. They also saw a renal cyst on my kidney and an esophageal cyst. The latter, 
after doing a Google search, appears to be a congenital malformation.  Apparently rare. 
The spine specialist really couldn't tell me anything about it because she never heard of it.
This makes me wonder if this is what was wrong with my dad when he was a baby. He would
not nurse or take a bottle. He had to be spoon fed. And even as an adult he had issues with 
food and eating. So if he had a birth defect that causes dysphasia it would make sense, sort of. 
If this is indeed then what I have and the MRI notes say I have this malformation, then that
explains why I have trouble myself sometimes.

All in all, there is nothing further she can do for me.  Since we have now ruled out all the 
things she would have treated me for.  I could tell she felt bad that she couldn't find answers
for me.  She is leaning towards a connective tissue disorder or a soft tissue disorder. But 
because this is all out of her scope of expertise, it's back to my Primary Doctor I go.

Honestly I am very relieved that I don't need any spinal surgery and that all that is wrong with
my spine is the degeneration and spurs, the stuff they found on the lumbar MRI, and the stenosis.
Finding out you have a birth defect at 53 is kind of mind-blowing.
Thinking back to my childhood, and how I was always picked on for being a slow or picky eater.
I wonder now was this the cause?

I hope I am strong enough to advocate for myself when I go see my doctor in a few weeks.

When You Still Don't Have Answers

 To recap, just in case I didn't actually write about or if I did to bring things into context.

Back in December 2021, I mentioned to one of my primary doctors that I've been have numbness and weakness in my arms and hands.  Sometimes it happens even when I'm laying in bed flat, or I can be laying on my left side and the right side goes tingly or vice versa. He said it was out of his wheelhouse and would refer me out.  I was perfectly okay with this.

A few months later I still hadn't heard anything so I called where I was referred to. They said it would be a 12 - 18 month wait, and that I should call in the summer to see where things stood. Fast forward to late autumn and still no appointment. And my referral is about to expire.  So I call the place I was referred to yet again only to be told there was a miscommunication and some faxes lost in limbo somewhere. 

I found out the wait was for a neurologist, but I was in fact referred to a neurosurgeon. That wait was only supposed to be 6 weeks.  They decided to gather information from my physical therapist and attempt to reach my primary again and review everything.  Neurosurgeon team decided I might benefit from a spine specialist first so that's where I ended up.  

She ordered an MRI of my lumbar region and nerve test on my arms.  Never having had a MRI done, I had no idea what to expect. Or if I would have a panic attack in the middle of it because I didn't know if I'd freak out in the tight space.  On top of that, I've been dealing with a cold for over two weeks and was sure I'd have a coughing fit in the middle of it.  In hopes of preventing that, I took a dose of Dayquil and a Benadryl for good measure. Also told the techs just in case. I made it through uneventfully, thank goodness.

At my follow up with the specialist we reviewed my results.  The good news is I don't need spinal surgery. The bad news is that we really don't have any answers to the cause of my pain. I don't have anything pinched which is good. But I do have early disc degeneration and a small tear in my disc at L5/S1. And arthritis in my lower spine. Despite all of this, she still can't tell me what is the cause of the pain. 

It could be all just the fibromyalgia. It could be that in addition to the arthritis, and bursitis which I have in my hip(s). It could be all of the above and/or soft tissue pain. It could be something they haven't diagnosed yet.

Next week I have my nerve test done. It is in part to determine if I have carpal tunnel or not, and if I do then to what degree. Depending on the out come I may or may not have an MRI of the neck and upper spine.  I'm also scheduled to see a chiropractor next month. And then back to the specialist in March.

I wish diagnosing me wasn't so complicated. So we're in a process of elimination pattern now. In the mean time, I am to continue with physical therapy even though sometimes I feel like I'm failing.

I need to come up with questions for my specialist, I just don't know what to ask. Mainly I want to know what can I do for the pain, especially on the really bad days. And what are some other possible causes, we started to touch on that but got sidetracked.

I think the worst part is the not knowing. Along with being unable to explain to others how I feel. When you have an invisible illness, it's hard for others to understand. It's equally hard for us to explain.  So many think oh if you just move more or do this exercise or lose X amount of weight or take this pill or that pill you are magically cured.

I have friends that going through similar things with chronic pain, arthritis, fibro, etc that are on medications and they've told me that none of it makes the pain go away. It's always there. On a good day, the meds just take the edge off.  I'm finding these days that over the counter stuff isn't really touching the pain. But I'm terrified to try anything else.  I've read about so many  horror stories that it makes me hesitant to ask for  or to try anything.  Still though, I think it is something I will have to talk to the specialist about.

So grateful for doctors that listen and not judge you.
In a recent visit with one of my primary doctors, he recognized that I was having an episode of PTSD during the exam and held my hand through it all while he using soothing words and assuring me that I was safe. I think it was the first time I full on had an episode in the midst of an exam.  So thankful he saw it and recognized for what it was, and helped me through it.

Until next time.... Bright Blessings

Is This Really How You Wanna Start Out 2023???

 I, we are beyond heartbroken.

This is  not how the year is supposed to start.

JUST NO!!!!!!!!!

Our beautiful, rambunctious, lovable St. Bernard died within the last hour 
of my writing this. She went outside to potty and play with one of our other
dogs. From what I understand she started coming up the, which isn't all that
big, and just collapsed.
Beloved and his mom tried desperately to revive her but without luck. She
was just gone. 
She was only 6 years, 4 months, and 1 day old.  

She had been to the vet sometime in the late summer/early fall for a limp.
Blood work at the time and x-rays of the leg didn't show anything out of 
the ordinary.  She was maybe 8 lbs overweight but we changed it up and
she had lost a couple pounds.

This beautiful crazy girl was one of a kind.

Go forth Georgia over the Rainbow Bridge.  Find Fred and tell him how
much we miss him.  Find my sweet Sylvie and tell her how much I miss her 
and love her.

Georgia and Sylvie

Georgia and Fred

I wish I had words to take Mom's pain away. Georgia was really her baby, but we
all loved her. This is going to leave a really big hole in all of our hearts.