I generally don't write about my illness. I may mention it, and occasionally dive a little deeper. I am generally honest when someone I care about asks " how are you doing?". 'Not too bad' or 'pretty good' are my typical replies. On rare occasion if it someone who I trust presses in deeper, I will give details. Most days I am not struggling with primary symptoms of a very rare neuromuscular disease because I expect them after this long; I am struggling with secondary effects of these symptoms. Many of them are physical in nature, but some of them are psychological or emotional. Feel free to close out of my blog now, I won't be offended because here comes a bunch of details that I need to get rid of by writing them so I can poke holes in the lid of my vent. I need to make the compost of thoughts into fertilizer to sprinkle back around and make great things grow. When I write, I usually have a point. I edit my stories well tailoring it to who I think may be the reader. Whelp, this one's for me. Unedited and raw.
People who I trust including my primary care physician know that I take what I call " ma-cations". A medical vacation -these are breaks from the 9 year unending process of seeing specialists and sub- specialists as we cross one bridge at a time. It is not meant to ignore my problems and I still check in with my primary ( doc). It is to take a mental vacation from focusing on "being sick" , to temporarily suspend the coordination of appointments, barrage of phone calls to our health insurance company, to allow myself to buy a new shirt instead of paying a co-pay. Celebrate Dan buying a new to him car instead of paying through the nose for my medical expenses. To schedule my week around a couple of small leisure activities vs. appointments is a welcome break.
I am in a place where anyONE with a chronic anyTHING lands once in awhile. I am angry and feeling stubborn. I am not yet bitter and for that I am grateful. I've been here before, I know it will pass just like secondary symptoms -such as a bruising my shoulder from running into the doorway of the laundry room does ( primary symptom being incoordination).
I found a new neuro-muscular specialist that is 4 hours or 5 closer when I was ending my ma-cation. She is thorough and incredibly smart. A general neuro raises a brow to indicate " very interesting" when I am giving my medical history and mention the allele on the gene that has mutated. Not her. She knows what the allele is for and is honest in saying that since it is an unknown variant and molecular genetics are complicated-alternate studies need to be done. In fact, molecular genetics is one of her special interests. So...that being said, she is new to my care team. I have not yet had time to build a relationship of mutual trust with her. Since my career in occupational therapy involved building therapeutic rapport with patients on my caseload, and having both good and bad experiences with specialists and sub- specialists over the last NINE years, I am cautiously optimistic. My ma- cation is over...here we go again.
I always coordinate care and make decisions with my husband and my doc. It started with yet another emg/nvc. ( electromyography - aka putting needles in your muscles to study them & nerve conduction velocity: aka shocking nerves and measuring the time it takes to activate or reach muscles). 15 insertions of the small needle gave her a look into my left leg. Then onto my left arm, shoulder, back, and hip....now turn and repeat on the right side. It's one of the least invasive studies I get to check " my progress" and by progress it means how my disease is progressing along. One of the specialists said it best a couple of years ago when put "the good news is you have time on your side, were tracking a course. The bad news is, you have time on your side and we're not seeing improvement."
Thursday I went to the lab for 25 tests, it was especially fun when my blood clotted off after vial 14. We took a break and tapped the other arm for the remaining 5. 12 vials got shipped to Mayo because our lab doesn't do " those tests". My doc is so, so good to me, I am beyond thankful that we trust each other. I pray every time I leave the office that he never leaves. The NM has 7 fairly in- depth things she wants me to schedule. My doc helped me agree to 5 of them. Most of them I can do here, there is only one trip back to Mayo.
I declined PT for a balance evaluation. I have a wheelchair ( 2 in fact), I have a cane. I have already had 2 full balance evaluations done ( resulting in wheelchair prescriptions). I did OT...for a living! This means cross-training with PT....hello. If there's anyone that can talk their way around this one- it's me. I'll call a PT friend. Dan is my cane when we are out & about. We have secret hand signals that mean : slow down, I'm fine, I need help, and oh shit. When we are holding hands walking ( slow but still walking!!!!) it has become second nature to use our secret handshakes and it seems to work just fine. ...except when he isn't there. Which is why he was all for another round of PT. My mind says- 3x a week to town...in the middle of scheduling other stuff- no thanks.
For the curious who want to know and the bolder who have already asked: yes it sucks being at home most of the time. Yes, it gets really boring and lonely. Yes I will have coffee with you in the park, yes I like you to call and chat, yes I like it when you stop over, no I won't go to Summer nights where parking is awful and I have to apologize for being in a w/c and say excuse me to get through a crowd. Yes it makes me feel weird when people stare at me, yes you should encourage your small child to ask questions about my foot to knee braces which I still refer to as shackles even though they are what enable me to walk outside the house. Yes, you should use dark humor as long as you aren't being passive-aggressive.
Dark humor is what gets me through an average day. Having my kids say they will charge admission for their friends to come watch how many things I knock over or drop while preparing their meal- is entirely different than a loose lipped comment meant to get under my skin. Yes, having a lot of friends in the medical field DOES help. Not in the way some insinuate ( better or faster treatment), but Dan has now been a specialty nurse longer than I've practiced OT- because I haven't practiced since 2009 ( still have my lic. Though just in case I make it to Tibet for a stem cell transplant and maybe some mushroom trials). A Lot of our friends and a few family members are in the medical field, and I've gathered a handful of friends who also have chronic illnesses. We relate differently. It means I can use medical terminology and maybe get a hell of a laugh PLUS what I came for (which is usually not fun).
No, I'm not usually mad, I have muscle a-synergy all over my body which can include my face- the courtesy smile I gave you is much better than the twitching, freaky attempt at a Colgate magazine style smile- I promise. Yes, I encourage Dan to go do things without me. No, I don't watch a ton of tv or nap during the day. no, I probably don't want to try the supplement you are selling EVEN IF it cured your Aunt's best friend's brother-in-law. Yes, I am on many meds, no I don't take narcotics. Yes, I alter my diet to include as much homeopathic medicine as I can. You are much more likely to see me at a small health food store than a giant chain grocery store. Yes, I do have vertical diplopia ( double vision, one on top of the other instead of side by side) and no, I REALLY can't drive at night. No, I don't complain much. Yes, I still have the same attitude of " why NOT me?" : you see, the alternative is wishing ill fate on others, and lately on the news and on my social media I'm seeing, reading & hearing too much of that. I'd rather we all encourage each other to be relatively happy in this life and exceptionally happy in the next. So, I am sorry for the lengthy post this time around. Hope you found your way through the maze of compost ( see definition above) thoughts and if you are still reading- thank you.
