I’m back. I’m sure some things have happened since last I’ve posted, but nothing too crazy.
This will be all over the place I’m sure….
I still have Dermatomyositis…probably always will but at least it’s somewhat under control with the meds. The weakness and fatigue are the worst part at the moment. Can’t even remember what it’s like to not be exhausted. Talking, hell, listening to people is crazy exhausting…so hard to put into words. I go anywhere and I’m so emotional because I am SO tired. It will be huge when that side effect is gone.
Thankful for a mild winter, the cold hurts. But in extreme heat I get more migraines, I would love to live somewhere with a middle ground!
Been going to our local Hockey games with the family. It’s a tradition I love and I know my daughter will always remember! I personally love the fights, and when fans throw fish on the ice (our team is called The Walleyes, makes more sense right?)
Now I’m the lucky winner of a hyperthyroid with many nodules. Popular belief is that a side effect of hyperthyroid is weight-loss, guess who isn’t losing weight? But I have been going to the gym and drinking lots of water, so I’m trying. Going to UofM next month to see what we can do about the whole thyroid thing.
MIGRAINES….ugh, they have been so bad lately. Luckily the nuero has determined the nerve blocks in the back of my head seem to. Help lessen the pain and frequency. But they are supposed to be delivered every 3-6 months, I seem to need them every other or so. On Christmas Eve at my dads house in Michigan I ended up with one of my worst ones. I was so sick there and managed to drive home (vomiting into a plastic bag all the way)my poor daughter in the car begging me to pull over. I knew if I did I wouldn’t make it home. Ended up in the ER where they helped me majorly.
well I suppose that all for now….
Not really sure what’s going on but I’m in a lot of pain lately. The docs answer is to put me on a couple weeks worth of the dreaded steroid I’m finally off of. Guess right about now I’d try anything.
Went to the E.N.T. today to discuss the possibility of uvulopalatopharyngoplasty to help with my sleep apnea since the CPAP machine and I are not on speaking terms.
I’ll tell you, this surgery sounds scary. For a normal person it sounds scary, for me it’s terrifying. The doc said he’d go into my throat and remove my uvula, tonsils, and cutting some flesh to make the airway larger…….I person who had it done said it was basically like the surgeon took a sharp ice cream scoop and scooped all the extra stuff. I just don’t think surgery is good for me…I’ve changed my mind twice already, so ask again tomorrow and I may say that I’m all about getting chopped up.
Anywho…I’ve attached the link to a Myositis Awareness Video I made starring some of my fellow Myo Warriors… I hope everybody can see it since I’m done making videos for a while,
This will probably be the last update for a while. I’m pretty tired of the repetitiveness of it all.
My numbers are rising yet again and this time along with the weakness and pain I’ve been having the added bonus of nerve pain throughout my body.
As far as the fatigue goes, I’ve gone from bad to horrible, falling asleep when trying to listen to someone talk, when I’m driving, pretty much anytime you shouldn’t be falling asleep.
Had my sleep studies and ended up with a C-pap machine.
I did start using my C-pap machine at night about 50% of the time so I’m hoping that will help me a little with my energy. Even though I only know how to use the machine half of the time and when I do I can barely make it through the night with the monstrosity on.
Starting to really feel down. I can’t play with Alexa. I try to do some activities and I end up completely out of breath and too tired to stand. Hoping for normal again one day.
For a while I’ll be offline.
Things are steady right now. Numbers are good. Feeling the same. But I logged onto Facebook to say “Hello” to a friend and future sparring partner and she was no longer on Facebook. I can’t find her anywhere.
Her name is Susan Morrow. I know she reads these blogs. I’m almost to the point of offering a reward for her return.
She’s about 5’8″ or 5’9″ (that’s what I’m guessing)
Likes to take long walks to the market for crumpets (I may have made that one up).
If you see her, please let her know I’ve been looking for her!!!
I haven’t been on here much. Got tired of saying the same old things and people don’t want to hear the same old things.
SO I will say something different! My blood work came back almost all normal. From my red blood cells, white blood cells, liver, almost everything! My CPK is hanging at 300, but not too shabby! We (as in the doctor and I) think the last treatment I had, which was Rituxan, may be why I am improving.
I’m recognizing the person in the mirror and couldn’t be happier about that!
I still get super tired throughout the day, but not like before. I can keep up with my daughter better, which makes us both very happy. We’ve been spending some quality time together, she’s growing up way too fast.
Well, that’s all for now. I’ll post the before and after pics. The before is me with my moon face, well “half-moon” face. It was actually way larger at the beginning of all of this! The after is me now.
I forgot to mention, I did try IVIG the second time around. After all the stress of hoping insurance would cover the treatments they finally did…then I ended up in the ER with meningitis because if the IVIG. It was HORRIBLE. Wouldn’t wish it on my worst enemy. Well maybe…
It was bad. So that’s why we are trying the Rituxan through the IV for now. We don’t want Meningitis anymore. It literally felt like my brain was going to burst out of my skull.
On the following, new and improved pain chart I would have been about a 7 or 8, for reals…
Guess who’s back? Haven’t had much to share, but figured I’d pop in and give an update.
My CPK (muscle damage) numbers are still too high (guess they are having way too much fun up there) so the docs had me do two days of an IV medication called Rituxan. It should be about 3 months before I know if that makes me feel any better.
Been having some heart “episodes” and breathing issues again. It’s all part of the game. Good days and bad. So I will be going for another Pulmonary and heart test soon.
My primary doctor is gone. He just kinda left town I guess, didn’t leave any contact info and that really sucks because he’s the first person who I really felt comfortable with going to for medical issues. He is the reason I was diagnosed so quickly when some people go months and years without a diagnosis. So now I’m forced to find a new doctor and try to “teach” him about what I’m going through.
Oh well, good news is…it’s summertime!!! 🙂