Sooooo. Where to start. When Jeff lost his job we not not especially happy to be leaving New Mexico. It was never a forever place but we had a lot more we wanted to explore and had finally started making friends and finding things to do and explore. I was in a rock grinding groove (with George Franzen as an awesome mentor) and had started making jewelry. Rio Grande Jewelry Supply is in Albuquerque and I didn't realize there really aren't places like this any where else. They have supplies but also offer advice. So I especially was not a happy camper to have to move.
When Jeff got the job offer we came up to Colorado and the greenness and water and trees and animals were very good things so we started to get excited. Then came the problem of my having to stay in NM to get the house ready to sell and Jeff having to stay at AirB and Bs while starting a new job and trying to figure out where we could live with 4 chickens and 3 cats. When that got figured out the house still didn't have an offer. It was 3 months before I could move up and even then the house didn't have an offer. That meant that I had to drive the long drive back to NM every few weeks to clean, water and haul crap up here. Not pleasant times. So then we got an offer on the house and it was probably one of those trips down that I overdid things and the health troubles began. Part of it.
So I don't know if I'll ever know the cause or sequence of events. At some point I apparently tore my hamstring and my gluteus minimus and medius muscles and hip labrum and didn't know it (how that is even possible I do not know). Then at the rental in Lyons Colorado I was tending the garden one day, stood up and knew something was not right. Then I was turning the compost and got stung repeatedly by yellow jackets and my leg swelled up (never had swollen after years of fire ant bites) and I couldn't walk on it for a week. Over the course of a week maybe I just could not bend at all. I cried continuously and couldn't get my foot up to get in the bathtub. Could not bend to sit down, stand up, clean cat boxes, pick anything up off the floors etc etc. I am not usually a whiner and have a high pain tolerance. Couldn't find any position to be comfortable in. Soaks didn't do anything. I cried continuously and if that was how things were going to be I didn't want a life like that (sounds melodramatic now). I went to the doctor on my birthday and got kicked to orthopedic people since it was a bending thing and after X-rays, injections in my tendon sheaths, waiting for MRI approval and getting the MRI they found the torn stuff and trochanter bursitis but that did nothing to help things improve. Non-steroidal anti inflammatory things did NOTHING. I was sent to physical therapy that kind of helped. After screwing around with the ortho people for three months and really just wanting to be dead I went to a rheumatologist and that is when things improved. She did not look at me like I was crazy when I told her I went from highly active to not able to go down two steps in a week. She ran about 15 tests to rule things out and before I got home had the results of two of them, c-reactive protein and sed rate, and told me the numbers "got her attention" and to go immediately to pick up a prescription...take it...and call her in two days. Literally 5 hours later I could sit in a chair and stand up with crying. Night and Day. That prescription was prednisone which I am still on today, for over a year now.
So after ruling out rheumatoid arthritis, multiple myleoma, celiac, ankylosing spondylitis, chrohn's, pernicious anemia (still not officially ruled out) and a slew of other scary cancers and things, the test results and my fast response to prednisone pointed to Polymyalgia Rheumatica (PMR). What is it? An autoimmune disease that supposedly won't be "chronic" but lasts 1-3 years and can come out of hiding years later for another round. The ONLY thing it responds to is prednisone which doesn't cure it but masks the pain so you can function. It also makes you fat (which you already are since you can't do anything because it hurts), gives you weird fat pads in odd places on the body, makes you even less able to deal with stressful things, and can give you diabetes, osteoporosis and serious problems that luckily I have not experienced (except osteopenia that hopefully will resolve if I can move more). It is not uncommon especially when you have an autoimmune problem already, which Hashimoto's Hypothyroidism is (I have had that for 10 years) . It affects the shoulders and or pelvic girdle. It might be viral but they are not sure. But in the investigation and ruling out of things it was determined that I had all kinds of irregular CBC stuff. I had a B12 deficiency, was anemic (not iron deficient but another kind of anemia), D deficient and had blood cells the wrong sizes and shapes and amounts. I was also running a low grade fever and had been for months (figured this out after I looked at visit notes from appointments with the orthopedics person). The low grade fever is another sign of the PMR thing. I was having trouble eating - it just wasn't comfortable. This doctor did a stomach ultrasound. She had me have an endoscopy and colonoscopy to find out why I was anemic. Also to biopsy things to see why I wasn't absorbing nutrients. All that showed up were the "itis es," gastritis, esophagitis probably from the prednisone I was on (was on it for a couple months before these tests). She was convinced I had celiac since it explained a lot of the deficiencies but that and pernicious anemia were not found. So I started getting B12 shots every month. Continued with the prednisone. Upped the D3 I was already taking. Then I had another test for the part of the intestines the colonoscopy couldn't get to. Still nothing. In a month the sed rate went from 78 to 28 (should be 0-10) and the c-reactive protein had a similar drop. After I started the B12 shots a lot of things improved.
Then came the reduction of prednisone. That went fine for the first 6 months until we/I had serious stress - bought a house, had to break a lease and find renters, had to coordinate asbestos removal and painting/texturing in the new house and coordinate moving chickens (they have to be put somewhere once they are out of the car) and cats and stuff. Then we had lots of decisions once we were in the house. We couldn't take our time because Jeff's family was coming to visit and we had no drapes, curtain rods, no extra bed, cabinets weren't painted, no knobs, no towels etc etc. Extremely stressful. Plus part of the family arrived on Easter Day. I had a relapse aka "flare." So I was pretty much back to where I started with the prednisone. At some point my migraines became super scary and I really thought I was going to die so Jeff found a migraine clinic and I started going there twice a week. Fast forward to now.
So a year and 2 months later I still get B12 shots and my blood work is normal. The anemia has resolved, the D is in the low normal range but everything is pretty much on track. I have gotten the prednisone down to 4mg which is 1 mg lower than where I was last January. I am reducing slowly and trying to keep stress at a minimum so I don't "flare." I am getting botox for the migraines and have a new inhaleable migraine med that is wonderful and the migraines have reduced in amount and are not feeling like migraines at all. No drooling, throwing up or vision problems.There is no way to tell if the PMR is gone yet. If I get symptoms as I reduce the prednisone I have to bump it back up by 5 and I really want to be off and get my life/body back.
So now to the new saga. I finally had a good day in July, almost a year exactly from when symptoms first showed up, so I took to my new roller blades. I was like a dog with its head out the window...I felt free for a moment with wind in my hair and the freedom of movement. Until I fell. Didn't hurt much, no road burn...no bruising...but on my arm near the armpit didn't feel quite right. A dull ache in the armpit especially when I did things, so I would stop for a few days then over do again. I kept doing all kinds of rock grinding and jewelry sawing, all kinds of yard work, we were still enclosing the Poultry Palace chicken runs...after 6 weeks I remembered how I didn't feel all the other torn muscles...how I was on prednisone (which makes you feel like a superstar because you don't feel pain) and decided to get it checked out.
Different orthopedic place. I had good range of motion, but I told the doctor about my other unfelt injuries and how I was on prednisone and he did an MRI. I had a high grade tear of one of my rotator cuff tendons and most worrisome was that my bicep tendon subluxed out of the bicipital groove - something physical therapy will not improve or fix. Surgery was scheduled for 6 weeks later. 4 days before surgery, after mentally and physically preparing for living in a sling for 4-6 weeks and not being able to do anything with that arm, insurance denied the claim and pulled the preauthorization. They wanted me to have a steroid shot (which the doctor did not do because I am on oral steroids) and to go to physical therapy (which he didn't send me to since it would not put the tendon back in the groove). I found out on a Thursday when the surgery center cancelled me as we headed out for a 3 day trip prior to the surgery. So when we got home the letter was in the mailbox and I called them. I found out I had 12 days to resubmit but 4 of the 12 days were over since they count the weekends. I got a cortisone shot and went to PT for 3 sessions before I had to fax crap to them since the rest of the days were a weekend. The whole time I called every day to give them updates. I had to get the shot, send PT notes and my record that showed I had the shot. After I sent stuff I got a call the next day that it was approved. Now I had to wait another 5 weeks to get on the schedule again.
Anyway, I had the surgery on November 29th. Lucky for us it was in the 2018 calendar year and my year-of-hell insurance out of pocket expenses were met. I had zero pain after surgery. Turned out to be a full tear of the supraspinatus rotator cuff, partial tear of the subscapularis rotator cuff, SLAP tear of the labrum, subluxed bicep tendon, and bone spurs. So after ropes and screws, debridement, grinding of spurs and a tenodosis (they cut the bicep tendon at the shoulder, cut a chunk off, sew stitches through it, made a bone tunnel all the way through the arm bone, feed a "button" with stitches through the tunnel to the other side and open it like a molly and tighten the tendon into the hole) things are pretty good. The biggest problem was the ridiculous "pillow" sling. Thankfully that was only for 2 weeks and the regular sling for 2 more weeks. I won't even get into that or the mental anguish and feelings of isolation and abandonment...enough said.
The sling is off, I am doing some exercises and starting PT. I can clip my nails, brush my teeth (if I lean down) and take a shower with the arm hanging. Can't raise it yet but this part will go fast if I don't blow it and do too much. By spring I can probably be doing my rock grinding and jewelry making and maybe some light gardening. I WILL NOT be overdoing. This has made me realize I am not 50...I have to reign in what I do. I need to preserve my body for my pets, jewelry making and light gardening. I will not be doing all the heavy duty shit around the house or even sport stuff the way I did before all these problems. Maybe everything will resolve and I will get back to normal healthiness in another year. I really hope so because I have never been this bored before.
So now that things are resolving I can make regular blog posts and hopefully I can enjoy Colorado this year and see things and more importantly DO things. Maybe I won't hike more than 2 or 3 miles ever again (still have butt tendon problems that may be a separate issue from the PMR) but I should be able to bike, hike a little and get out and see stuff. So check back for glimpses of Colorado. Who knows how long we will be here.
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