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Friday, January 2, 2015
The is me and my friend/neighbor, Boston Lisa, waiting for the new year to arrive the other night. There’s a long story behind her nick-name, but I won’t bore anyone with that. We all got together to ring in the new year and to pay our respects to one of our close friends, Jimmy, who died unexpectedly the other morning. Jimmy was only 55, strong as an ox, hard worker, nice as he could be, admittedly quite the redneck personality, but always there to help out. He apparently was simply walking down the hallway in his home and collapsed in front of his wife and they were never able to revive him.
Here’s Jimmy (on the right) with his son, Justin, working on someone’s door this past summer. I knew Jimmy for about twenty years. I saw Justin grow up. I remember Justin being a small kid afraid to jump off the dock into the water. He’s a man now. Time moves on. It most definitely moves on.
Time is moving on for me with this diagnosis. I’m improving. I still have this S-I joint thingy that is sore, but yesterday I actually jogged 3 1/2 miles. It took me about 36 minutes, but I was sort of running for the first time in over three weeks. These were literally the first jogging/running steps I had taken in three weeks. That is the longest I have EVER gone without running a single step since … um, I think since I first started running. So, yesterday, I just kept going as long as I was feeling okay. I think if the S-I joint was okay, I could have run instead of jogged. Maybe, maybe not, but I’d like to think that I could have.
So, this morning I decided to try again and I jogged my 10K loop. Again, it was pretty slow because of the S-I joint. If you have never experienced it, you just cannot imagine how sensitive it is and how painful it can be if you pull it just a tiny bit too much. It took me 67 minutes to jog my 10K loop. Let me put that time into perspective. I have done practice long runs on that 10K loop where I have run the loop 8 times in a row, stopping only briefly between each loop just to get more fluid and food, averaging about 43 or 44 minutes per loop for all 8 loops … and feeling great the whole time. And, that was just before all of this started back in August of 2013.
But, I am out there jogging/sort of running for a few steps here and there. I still feel incredibly anemic also. I probably am. I think that the medications they have me on to shut my immune system up are not very specific in their targets – they just aim for a set of cells created in my bone marrow and knock them out, period, no real specificity. I know my HCT (hematocrit) before they began this whole medication regimen was 44. I know that it was 39 a little over a week after starting all the meds. I suspect it is lower than that now. I’ll find out on Tuesday when I go in for another dr’s appt. At least I have gotten enough used to the meds that I haven’t done something like thrown up at the department holiday party. Yes. Yes, I did that. But, thankfully I had enough practice with partying in college that I when I came back and sat down, nobody realized that I had just been in the bathroom puking my guts out.
I am currently working on reducing the prednisone – a decision I sort of made on my own, but then checked out with my endocrinologist after I explained my reasoning behind it. She was okay with it. So tomorrow I will be all the way down to 20 mg/day which is a huge reduction already. High doses of prednisone send your blood sugars skyrocketing high, like ridiculously, demon-like high, like 500s and 600s high … with ketones … and sometimes acidosis. A side note here, though: I have worked very, very hard to keep my blood sugars under control with all of the extra medications and my A1c last week in endo clinic was 5.8. So, when people tell me that they have too many things going on in life to manage their blood sugars correctly, I call b.s. on that. My c-peptide is zero, by the way, so I’m not getting any help from my pancreas on this. I am doing this with shots, using a combination of Lantus, Humalog, and Regular insulin.
I am burning through some test strips, though, and my endo wants me to apply for a dexcom. While it’s a great idea, and I would love to have one to use, I simply cannot afford the co-pay and so will not be applying for said continuous glucose meter. It’s a great idea, but with all the other medical expenses I’ve had and all of the paid work that I have not had (I’m not working full-time, put it that way), I simply cannot afford it right now. And, that’s that. When I add up the cost of extra test strips and the inconvenience of setting alarms in the middle of the night versus the insurance copay for a dexcom, I just can’t justify the expense in my mind.
So, I also mention the prednisone because my goal is to be off of it completely by the end of the first week of February. I will go back in to see Dr. Juel the beginning of February and I still have this issue that I have some ligament damage around two vertebra in my neck (very likely because of the intense, lasting spasms in my spinal erectors over the past several years … and probably because of normal wear and tear for a 50 year old distance runner). While I do not HAVE to have surgery to stabilize those two vertebra, I have decided that I want to have the surgery. I want the problem taken care of while there is a window of opportunity that my health will allow it, and before something would happen to make it worse. Besides, I have started getting pins and needles episodes down my right arm on a daily basis now. I cannot have the surgery while on a high dose of prednisone for many reasons. Then, there are all the other medications. Ugh. I’m hoping they can be reduced as much as possible by early February and that we can go ahead and do this surgery and move forward. And, even if those issues are dealt with, this disease raises a host of anesthesia issues as well. I am so fixated on getting it done, though. I’m not sure that I can articulate exactly why I’m so fixated on it, but suffice it to say that I will push for having it done … as soon as possible … hopefully early February. I don’t know, maybe there is a part of me that feels like it will somehow give me part of my life back. And, maybe it will. And, maybe not. But, I want to try while I know that my health will allow me to try it.
And, now, actually, I have a host of health insurance issues to deal with as well, I have student essays to grade all weekend …. Wow, I may have to take a walk on the trail later just to decompress.
Happy New Year to everyone and I hope that you can set and achieve some goals this year that will be meaningful.