A few years ago I wrote a few blog posts about ‘new’ issues that are now becoming reoccurring themes in my life. I’d never be able to make the connection that something infrequent back then is frequent now without this blog...
Moral of the story.... write it down!
Over the past few months this trend of issues becoming more frequent is starting to consume my thoughts everyday. Panic seems to snowball and there really isn’t anyone that understands enough that I can talk to. Also I don’t talk about it because I’m afraid to face what I am most afraid of and/or that I’ll just sound like an overly emotional crazy person who isn’t being rational. 😬...
- What happens if this trend continues and doesn’t get better?
- What happens if I can’t work?
- What happens if I don’t survive this?
- How long will I survive this?
- What is this new pain?
- Why do I feel this way?
- When will I feel better?
- Is this normal?
- Is this new?
- Is this the NEW normal?
- Am I overreacting?
- Why me?
- What if this is like all the other times and a week from now I'll feel perfectly normal... Why do I worry about so many things I can't control!!!
Funny thing is every day, dozens of people ask the same questions in Chiari Facebook support groups. Being that we are all so different and doctors are not very helpful, crowd sourcing your questions is sometimes the best option. Some make me feel not quite so alone. Some scare the hell out of me. Regardless it's therapeutic to support others who you know feel a lot like you every single day.
If you are going through this or are close to someone who is, I highly recommend joining more than one support group if you haven’t already. At the end of the day, the world is a little smaller and you are a lot less alone in it. My only advice... don’t take things posted to heart cause what happens to others, won’t necessarily happen to you. Your journey is yours, but don’t walk it alone.
One random thought that I haven’t shared with anyone, but want to share here... (cause a baseline is important as previously noted) 😁
Years ago when I started down this journey, multiple doctors told me that my only option was to have a surgery that I’d rather die than go through with. They said to have it ASAP (Dr. Oro said it was a must within 6 months, some 8 years ago). Yet today, I refuse to go down this terrifying path and the worse I get, the more this choice haunts me.
- Is it the wrong choice?
- Am I being selfish by not going through with it on the off chance it could prolong life with my family?
- Would it actually prolong my life and what would that life look like if I did?
- Would I be selfish for going through with it and not being able to work?
- Will there come a day that I’ll regret my decision to not go through with it because some permanent neurological symptom suddenly showed up?
- What would life look like if I fell and ended up with brain stem compression?.. being dependent on my family for day-to-day functions is one of my worst fears. If I had the surgery, the likelihood would decrease significantly, but who knows what life would actually look like.
I DON’T KNOW!! I hate not knowing.
So what I’ve done is stick my head in the sand for years. Since leaving Dr. Oro’s office so many years ago, I haven’t sought out someone locally who can help me with the symptoms because I’m so afraid they will say there is no help and surgery is the only option. Sometimes not knowing is less scary, but I’m reaching a point that I can’t ‘home remedy’ my symptoms and live a normal life.
So, I don’t know what to do... I hate not knowing.
Oh, PS... I actually just lied. I did reach out to my primary to help with my symptoms... weak neck and muscle spasms. He diagnosed me with cervical osteoarthritis... FOR THE LOVE OF GOD.... stop diagnosing me with shit.
Then he said I don’t know what to do with you and referred me to a neurologist, except I was too scared to return their call for an appointment. Therefore, my head is still firmly in the sand and no help for my symptoms, so technically it wasn’t really a lie.
If I had a dime for every time I heard “I don’t know what to do with you” I’d have several dollars.
Tip to doctors... don’t say that.
So that’s the things I’ve been thinking about and haven’t said to anyone. When I look back on my blog like I have so many times before, it will be helpful to see where I was today and hopefully remind me that this was just a passing phase and feeling better was just around the corner. (like so many times before)
Update on me:
My neck hates me.
Muscle spasms are almost hourly and makes my head feel like it weighs 80 pounds. These spasms set off terrible headaches in the back of my head, I think because I am clenching everything to either hold up my heavy head or get past the spasm.
That’s pretty much it. It’s funny how, of the 4’11 of me, 3 tiny inches can make me miserable. Everything else feels fantastic!!
I guess to close... I’m okay. As someone with these awful conditions, I’m better than most and for that I should be very grateful. We are all entitled at a pity party now and then and I feel a little better for having written it down. I promise for a stronger, more positive Courtney in the next post.
Oh, PS... two more things.
1. This website was shared in one of the Facebook groups... it’s a great source of information and very well written. https://chiaribridges.org
2. Someone also in one of the Facebook groups made a connection after my listing out my numerous conditions and reviewing my MRI that they were potentially all stemming from EDS / Connective tissue disorder. I suspect this as well. But, guess who isn’t interested in getting a genetic test to find out I have yet another condition that has no cure? This girl right here... I’m fine not knowing!
Lastly, I struggled with the title for this blog till I remembered something that my mom use to always tell me when things were at their worst and things feel pretty rotten now. This too, shall pass... this won't last forever and things will get easier. She has never once been wrong about that, so this too, shall pass.
