Here it is… New Year’s Eve. Getting ready for 2016. It’s been a bumpy 2015, though I realize I still have a lot to be thankful for. A lot has happened. A few things are still being diagnosed. There have been family changes. And like always, I seem to manage… but it’s getting harder to do it on my own. Fortunately, I believe that God has it all figured out. I don’t have to understand it all…
Last year about this time, I did a home sleep study, that showed that I stop breathing about every 3.5 minutes….so basically I don’t sleep enough for it to be useful. I hadn’t been getting to the REM stage, so restorative sleep was kaput. I went in to get ‘fitted’ for a CPAP (continuous positive air pressure) machine, and it has really helped. The morning headaches have pretty much disappeared (that alone was worth the price of admission). I dream more- weird dreams, but not bad dreams, and I’m getting to the stage of sleep where I can dream. Add a pulmonologist/sleep specialist to the list of doctors I see- but this guy is A-OK. The increase in the quality of my sleep has perked me up, so I want to do more. I can’t always physically get it done, but it’s nice not to feel like I’m a total slug.
Then the summer came around, and it seemed like my body decided to take a flying leap towards deterioration. From the head down: scalp psoriasis got much worse (no more dark colored shirts for these shoulders), swallowing got bad, GERD got worse, back pain intensified, blood sugars got nutty again, legs started having intense burning pain (as in being set on fire… not sunburn), right leg atrophy got worse (muscle shrinking), legs started getting weak to the point of feeling like they would give out, blood pressure and heart rate started to do their dysautonomia/POTS thing- again, and something I’m forgetting. Oh, yeah…. the kidney function tests got weird after my blood pressure got really low.
The psoriasis is an autoimmune thing (not to be confused with autonomic… they are very different). I keep my head shaved for the autonomic disorder (very heat intolerant, and what is more heat retaining than a head full of hair that is about as thick as a bear rug?), but now the psoriasis ointments benefit from not having a ton of hair to muck through. SO, I’m usually mostly bald, and flaky. Not like normal dandruff flakes (those are there with the psoriasis as well), but like sheets of skin the size of my little fingernail peeling off. Lovely. And, yet that is more of an annoyance than life-altering.
The swallowing is still being evaluated. So far, it looks like achalasia (esophageal spasms that don’t allow for food to pass into the stomach normally; feels like a golfball is stuck in my pipes). They also found a “clinically significant lesion” at the junction of my stomach and lower esophageal sphincter (end of the esophagus), which will be further checked in a couple of weeks when I have the third endoscopy in five months, but with an ultrasound and biopsy done this time. I don’t like the word biopsy, and don’t like that it took about a MONTH to get the biopsy scheduled. To me, that’s not OK. In the meantime, it hurts, and food choices are more limited, or I have to pull things out of my throat with my fingers. The safe foods are more carbohydrate ‘intense’, which hasn’t done much for my blood sugars. SO, add a gastroenterologist, and return visits to my endocrinologist.
The reflux was also really bad, but changing some of what I eat, as well as a hefty dose of a proton pump inhibitor (GERD medicine) has helped somewhat. I can no longer take ibuprofen, or any meds in that category because of chronic gastritis (inflammation of the lining of my stomach), so that is a problem with pain management with other stuff.
I’ve got degenerative disc disease, so it’s not all that unexpected that lower back pain gets worse over time, and I knew I was going to have to go back to my pain doc. I needed a current MRI so he knew what was going on. That MRI was horrible. I’ve had a lot of MRIs, and usually it’s no big deal. This one was for both my lower back and neck
(it’s in worse shape with messed up discs and bone spurs), with and without contrast, so it took a long time. I bailed after the “without” part of the test. I got both the neck and lower back done, but I couldn’t take being on my back any longer, not able to move. Anyway, I went back to the pain doc, where I got an injection in my back (have had a lot of those; they aren’t that helpful, but it does help a little for a few hours). The next step with that whole mess is to have a spinal cord implant thingie that blocks how my brain perceives pain. It fixes nothing except perception. I’m going to have a pelvic CT just to make sure something else isn’t going on before I have something implanted in my back/spine. In the meantime, it’s pain meds (that I don’t like). They do help, but I am very careful about making sure I don’t get too used to taking them. I’m not concerned about addiction. I get no ‘perks’ other than pain relief. I use them as directed. But physical tolerance is something that happens with several types of meds even when used as directed. It is not the same as addiction (no psychological component ), but can cause symptoms if the meds are suddenly stopped. So I’m careful. I don’t use them every day. I follow the dose instructions. I don’t mess with them.
During a routine follow up appointment with my oncologist, my lab work came back funky for my kidney functions. My blood pressure had been low for a while, and evidently low enough to mess up blood flow through my kidneys. After a few medication adjustments, my blood pressure came up and my BUN and creatinine went back to normal, along with my glomerular filtration rate (which had put me in the stage 3 level of chronic kidney disease). One thing that has always spooked me about being diabetic is kidney failure. I’m not sure I’d agree to dialysis if it involved the sort that requires dialysis three times a week no matter what the weather, for 3-5 hours at a whack. That’s not a life in my eyes. Just my opinion, though I’m sure if it came down to it, I’d do dialysis for a while, and make any other decisions along the way.
My right thigh had started to shrink (atrophy) a couple of years ago, and a muscle study (EMG) that involves pins stuck into the muscle with a bit of an electrical jolt thrown in showed that I have neuropathy. Between being diabetic and a LOT of chemotherapy that often gives people neuropathy that don’t already have it, I was like a neuropathy magnet… and it was getting worse. During the summer, I started having sensory issues. As in it felt like my right thigh was literally on fire. Ignited with an accelerant type of fire, not a sunburn. I’ve got a pretty decent pain threshold (as in joking with nurses during bone marrow biopsies), but this pain would not only wake me up at night, but briefly immobilize me while I tried to make sense of the intense fire sensation, and no fire anywhere near me. If/when I got myself rolled over ON to the burning leg, it would start to subside. The same area was numb to touch all the time… Back to the neurologist for another EMG. The sensory peripheral neuropathy was now said to be progressive (I think most of them are). Then back to my regular doctor to discuss medication options that wouldn’t mess up the rest of the pharmacy I take. And, to have her check my muscle strength. The right leg isn’t so good, and if I’m standing for very long, I feel like it’s going to give out…. so I now have a wheelchair for more than walking around in my apartment, or to the dumpster- which I still do to keep using my legs as much as I can. The other leg decided to join in the burning pain and numbness, so it’s a two-fer now. The wheelchair has been a huge help in getting around at church (I joined a women’s Bible study this fall- the first socialization in years). I hope to go to the mall soon. 😀
With my blood pressure and heart rate starting to be weird (kind of like it was in the beginning of the whole dysautonomia business), I was getting more symptomatic. One night on the way to my dad’s girlfriend’s house for dinner, I started feeling like I was getting a bit foggy-headed, and my heart rate was going up. Time to head for home. Don’t pass go. Don’t collect $200. My internal med doc (regular doc) had already adjusted my long-acting blood pressure med a couple of times,
(paradoxically helps keep my blood pressure UP, unless something isn’t working even more weirdly) , so she sent me off to a cardiologist – more specifically, an electrophysiologist who deals with heart rhythm problems, and dysautonomia. The good news was that my EKG in the office was OK (which was expected). My echocardiogram (ultrasound of heart) was OK. Not perfect, but not bad for my age…. my AGE….. arghhh, I’m getting older on top of all of this :p . Thankfully, she didn’t want me to hook up to one of the 3-4 week King of Hearts monitors for extended testing. Those are annoying. I’ve done them twice. I end up with episodic tachycardia (fast heart rate), PVCs (not good if they keep going but a couple of them aren’t that big of a deal), and ‘burns’ from the electrode adhesive. I’ll go see her again in a couple of months as a follow-up.
Sometime during all of this, I went back to my endocrinologist after my A1C (average blood sugar over about a 3 month period) went up more than I was OK with. I hadn’t seen her in about two years…. I’m SO tired of seeing doctors. But she got me some new fangled insulin samples, as well as the ‘good’ short acting stuff and told me what to take. I found out that my Medicare part D (drug plan) would cover BOTH of them at the Tier 2 copays !! That was huge ! I actually cried with joy at being able to get the ‘good stuff’, and not have to take the “disco insulin” anymore (it was popular in the 70s) . God bless Walmart for making disco insulin available for $25 per vial ( good insulin can be 10x that price). But I was going to be able to get the good stuff, AND the endocrinologist got me enough samples to get me from the beginning of October THROUGH the end of the year ! 😮
SO, just from medical junk going on, I’ve seen a pulmonoligst/sleep specialist, internal med doc, oncologist, cardiologist, neurologist, endocrinologist, gastroenterologist, and board certified pain management doc. Good to have all of those folks to help.
My 100 year old grandmother died on Halloween. There was a lot of really snotty stuff that went on with the living siblings (aunt and uncle) ‘passing along’ information to those of us grandkids whose sibling parent was already deceased. From my standpoint, there is no more family besides my six cousins (in one family). I am in contact with my mom’s deceased brother’s kids, and that’s it. Toxic people can be prayed for from a distance. I will always wish them well. I will not be part of the games by pretending that it was all OK. I couldn’t go to the funeral (see above), and the six cousins who also have a deceased ‘sibling parent’ weren’t even seated with the rest of the family.… ’nuff said. Who knows what my other cousins have been told about how we were left in the dust with being informed about changes in grandma’s condition (admission to hospice) AFTER they’d all had a chance to go visit grandma from various parts of the country (not all did go, but they KNEW what was going on). And it really doesn’t matter anymore. It will be very clear in the end when we all meet our Maker. The aunt and uncle (living siblings of my grandma’s) have to live with themselves. I don’t.
I’m so thankful for my dad. He’s my earthly ‘rock’. He’s 83 years old, and going strong. We talk every day, and see each other at least weekly. It’s a gift to still have him in my life. We joke with each other all the time, which is great- but I’m also so grateful for him.
Shelby turned three years old on Christmas Eve. She’s still a ‘puppy’ at heart, and my baby. She had to have a toe amputated this summer- it was benign (there was a swelling and firmness to it that was suspicious)… and she’s back to running around all over the place. She really is a wonderful companion. She’s nuts… but that’s fine ❤
Joining a women’s Bible study was great and I look forward to the new semester starting next week. It’s been a LONG time since I’ve had much continual socialization opportunities. I have to take my cooling vest, wheelchair, and Bible with the specific study guides, but it is such a blessing to feel like I’m a bit of a part of something. It’s at the church where I grew up, so there’s a sense of familiarity, and I’ve met some really nice new people. I also ran into the mom of one of the tiny babies I looked after in the church nursery (who was my favorite in the 0-7 month nursery- she was such a bitty little thing, and so cute; I claimed her as mine for an hour each Sunday 😉 ). It was great to see someone from the past.
A lot has gone on… it sounds like most of it was ‘bad’, but I don’t feel that way. I’m getting some help with making life a bit easier (wheelchair, better insulin), as well as less isolating (Bible study). That trumps the bad stuff to the moon and back. I’ve accepted that I need help with some things, and have a couple of friends who are willing to help. My dad is healthy and a lot of fun. I have a great relationship with my birth mom, as well as her extended family. I can still live in my own apartment, and have my goofy dog. Through Facebook, I can remain in contact with family, friends from Texas, as well as those I’ve known from before then. No matter what is going on, I believe that God has it all under control for His good. I don’t have to understand it, but I do find comfort in His ability to get me through whatever goes on. I always seem to land on my feet (more or less), and I believe that my faith is what gets me through things. God is good.
Bring it on, 2016 ! 😉