Weekly Log 8-Jul to 14-Jul: Potential DIAGNOSIS!

Miscellaneous rambling:

• This week, just around the corner from my house, an elderly out-of-state tourist with NY plates cut me off.  She screamed something at me that I didn't catch, except the last word:  "Stupid!"  I simply calmly told her that I had the right of way, not her, and she sped off.  The same exact thing happened to me last summer at the same intersection (Airport and Winnapaug), except that time I got luckier as a Westerly PD car was there, witnessed the event, and put on their lights and pulled over the offending driver.  Why don't people just take their time, relax, and calm down?  Especially presuming they're on vacation here.  Ugh.
• While biking along the shore, was shocked to see parking in Watch Hill is up to $40/day now, and at Misquamicut beach lots, $30/day.  I don't want to sound like my Dad telling tales of buying bread for a nickel a loaf in his day, but this is outrageous!

Monday:  0
Planned rest day from Loon.  1st day off the meds, and I'm starting to feel it, especially as the pain returns to the shoulders.

Tuesday:  0
Even worse than last week, I am having a very difficult time today, as all the symptoms have returned, and then some.  Had an extremely hard time and quite a while physically getting my carcass out of bed and standing up.  Could not put on my own socks, no matter how many times I tried nor how I varied the position leaning, sitting down, etc.  Had to have Jana put my socks on for me (is it time for "the home" as Mike B says?), and I didn't even bother to try to tie shoes and just went for the slip on variety.

I was thrilled I was able to get in to see my PCP same day, as I could not move my right arm more than a couple of inches in either direction, and couldn't even shift the car.  It was awkward starting the ignition and shifting my manual gearbox with my left hand, but got it done.  When the nurse brought me in, she commented on my limping right away.

I summarized my pathetic previous week for the doc, including my physical setbacks, going to South County Express Care while he was on vacation and getting predisone, which responded nicely, but now off the meds I'm set back again.  He said he'd get me referred to a rheumatologist, and gave me a second more-detailed set of lab tests, including the previous two rounds of tick-borne tests, muscle enzymes, inflammation, and a bunch of stuff I don't understand.  I asked if I can I get another prescription of Prednisone.  I couldn't believe he said no!  He said I can't live my life on Prednisone, but I said I can barely live my life at all now, told him about the difficulties I'm having, and I either need to get some relief until I can get in to see a rheumatologist (likely 1-2 months) or I probably can't continue working at the office and will be homebound requiring assistance.  I pleaded and begged to get more Prednisone, and in the end he capitulated with a very low dosage for 30 days, and said no more.

Ophelia (Jamie Lee Curtis) to Louis (Dan Aykroyd) in Trading Places:
"Come on baby, just a dime bag. 
I'll do all those things you like."
-------
That's the junkie I've become.  I was literally begging my doctor to give
me drugs against his judgment, as this is the only thing that's given me relief.

Getting my blood drawn, I was feeling really weak after a while.  I always look away because I'm squeamish like that, and when done, the person drawing my blood explained that they usually draw just one vial or sometimes two, but she had just taken eight vials out of me.  Yuck.

Wednesday:  0
Continued hobbling means I can barely walk and running or other exercise is out of the question.  Had to cancel working in MA and made up some excuses as there's no way I could drive there and spend the day.  Instead went home at lunch and crashed on the couch in pain.  I didn't think about how low the couch is, and had a tough time and took multiple attempts to get off the couch.  Pathetic.

Hobbled as I volunteered at the Fun Run in the evening.

Thursday:  0
Day 2 on the low dose Prednisone.  I'm still hobbling in pain, but starting to feel marginally better.  I've regained partial use of my right arm again.

In the afternoon I had a follow-up appointment with the orthopedic doctor looking into my original shoulder pain and mobility issue, before realizing that is all tied together.  As the symptoms have changed and spread to both shoulders and both hips, we know it's not a left shoulder specific injury or issue, so I actually thought about it cancelling and saving the $50 co-pay.  So glad I didn't!

This doc spent a lot of time with me today, reviewing my lab work, asking a lot of questions, poking and prodding, and having me perform a number of physical tests.  After that, he sat down and said with a reasonable degree of confidence and pending confirmation and review from a rheumatologist, he said he feels strongly that I have Polymyalgia Rheumatica, and explained in detail why he felt this way and why it wasn't other specific disorders, infections, or diseases.  I was so happy to have a medical professional, for the first time since this started in May, express what they felt to be a diagnosis!  Once you have a diagnosis, you can move to treatment.  So what is Polymyalgia Rheumatica?

Polymyalgia rheumatica (PMR) is a rare inflammatory disease that affects older adults, causing widespread muscle pain and stiffness, especially around the shoulders and hips. 

PMR primarily affects the shoulders, neck, hips, lower back, and thighs, with muscle pain and stiffness that is worse in the morning. A systemic disease (affecting the whole body), PMR also causes flu-like symptoms, such as fatigue and fever. 

The symptoms of PMR can come on suddenly, over a period of days or weeks. Corticosteroid medications such as prednisone are prescribed to reduce inflammation and pain. Patients usually respond quickly, within 24 to 48 hours, but most need to remain on treatment for a year or more. The disease typically runs its course in one to five years. However, even with effective treatment, relapses can occur, so ongoing medical follow-up is essential.

https://www.vasculitisfoundation.org/education/forms/polymyalgia-rheumatica/

So, now what?  Continue on the low-dose Prednisone until I can see the rheumatologist, and my orthopedic doctor will also make a call to see if he can accelerate that visit.

Remember this scene in the church from Blues Brothers?
I'm so happy to have a likely diagnosis, that I could do backflips.

Friday:  0
Day 3 on the low-dose Prednisone.  Gradual improvement.  For the first time since Monday, I was able to put on my own socks!  Ridiculous, I know, but I'm celebrating the small victories.

Saturday:  0
Continued improvement.  First full day this week of no limping at all!  Still near-constant pain in the shoulders, but again, I'll take the improvements.  Finally had enough mobility to attack some projects that had been sitting, including 1) rewiring the garage door safety sensors and thus getting the door to work again, and 2) changing the spark plug, air filter, and fuel filter on our tractor lawn mower, and thus getting that to run again.  It felt good to actually get something positive accomplished.

Enjoyed the afternoon at a friend's daughter's graduation party, and felt physically very comfortable the whole time.

Sunday:  15 bike, 5 run!
Decided to go for a solo easy bike ride along the local coast.  Stiff getting on the bike, and riding at first, but really felt good after that.  Towards the end of my ride, stopped for an iced coffee at the Weekapaug Inlet, and enjoyed some downtime and people watching.

Got back from riding and Matthew asked if I wanted to go for a run.  Hmm.  I actually feel up to it, but it was almost Noon now and he was planning to run Avondale, which I felt was too open in the hot sun for me.  When he suggested changing to Bluff Point State Park, I'm in!  We ran about 3 miles together at my pace for today (8:15) and then he went off while I continued at the pace back to the car.  Legs were stiff but manageable, and shoulders still painful, but they always are lately and that didn't impact my running.

Weekly mileage:  my Sunday activities only - 15 bike, 5 run

Weekly synopsis:  What started off again as a terrible and physically debilitating week was offset by getting a potential diagnosis on Thursday.  I really feel things will continue to improve from here, albeit gradually.

Weekly highlight:  The potential diagnosis received on Thursday, for sure.  Yes, it still needs to be confirmed, and assuming it is, it will likely require a year of more of taking drugs.  But just starting to get some answers is a huge relief, and my recent downward spiral into loss of mobility and constant pain was just robbing me of any quality of life and taking way my dignity.

Weekly lowlight:  Just like last week, having a really rough day on Tuesday and not knowing when or if this ever going to be resolved.