I have home-nurses who come twice a week to draw blood for labs, change the cover on my port, take my vitals, and quiz me about bodily functions. They are great, really. I can not complain. As you know, the Mr. has always drained my lung. He's good, and I trust him. See, he's an OCD personality, so he's thorough. When it comes to medical stuff, I'm down with that.
Back in December when I first got the drain tube, the home-nurse agency we selected trained him, observed him a couple of times, and signed off on it. This time, we found out that, that particular agency doesn't handle home IV antibiotics, so we had to chose another. The policy of the one we chose is that their nurses always do Pleurex drains, because its an opening into the body and keeping things sterile and clean are the #1 priority, and for liability reasons and blah blah blah. So we kind of went back and forth a bit and Pam, the nurse supervior, conceded to come over the next day and "observe" him doing it. Cuts down on my ultimate costs, because its less home-visits. I'm not on Medicare or Medicaid, I have private insurance, so no free ride for me. Anyway, the moral of the story is the new tube is working like a charm! happy happy happy! And Pam was so impressed with the Mr's technique, she commented that he did it better than even some of her nurses. :) He grinned from ear to ear, and he should be proud of himself. I'm proud of him.
I have to see Dr. O tomorrow (everybody really does call him "Dr. O" because I think he's from South Africa or Kenya, and has a name that is very hard to pronounce.). He's the infectious disease specialist here, and he's monitoring my antibiotics. I'm in week six (that's counting the two weeks in hospital) of the treatment, and if he gives me a clean bill tomorrow, then I can get the port removed. Yay!!!
Constant Road Blocks
Its always something ain't it? As of tomorrow, I will be completely out of leave time. I get one more full paycheck, and that's it until my pension kicks in. How long will that take? Only God knows, because this IS the gov't, and this is OPM we're talking about. I've heard some say it kicked right on time the next month, and some say it took 2 or 3 months before it started. And lets remember, it took OPM 9 months to get to my Disability Retirement package, only to respond that I had not proven I'm sick enough for the disability part. That's why I had to do what I did and just take the early retirement. That being said, there is the volunteer leave program, wherein other employees with scads of leave on the books (like I used to have), and they can donate hours to me. The more hours I get, the less days of leave-without-pay I'll have to eat. So this program requires a letter from the doctor, stating diagnosis, prognosis yadda yadda. So I got that. Took it to personnel....and they promptly rejected it (this was a week ago today) because OPM requires a start and end date for treatment. *cue deer in headlights...crickets chirping* My letter didn't state that. Fresh hell for that day. This meant I would have to take the letter BACK to the doctors office and ask J-the-nurse to fix it. Doctor G and J the nurse are off on Wednesdays, so it was Thursday before I could get the letter back. I sat down and wrote J a nice little note apologizing for having to return it and taking up her time blah blah blah. Today is Tuesday....still no letter. And I'm out of leave tomorrow. effing wonderful. You know, people really don't have a clue nor a care what some are going through....its all about them and their world and what's happening to them. Forget the fact that my insurance and my self, have paid literally thousands and thousands of dollars to them over the last two decades. Ok, enough. So I have an appointment this afternoon with Dr. C the surgeon. I'll get Trisha his nurse to do one for me. *sigh* I'm not going to lie. Retirement is scaring the hell out of me. I've worked full time since I was 17. Its like a death. And our standard of living is going to diminish greatly. Most of my monthly pension is going to go to health insurance, and taxes. We'll be poor as church mice. That's one of the sad parts. we finally got the mortgage paid off and finally had enough each month to pay the bills, feed us, and plenty left over to play with. All will be gone. We'll manage. I'm a worrier. Retirement party is 24 May. I'll post pictures.
While I was in the hospital, it was discovered that I have high sugar (I'm sweet like that :), and was given insulin while inpatient. When I got home and saw Dr. G the next week, I had my A1C checked. Diabetic is a score of 7, mine is 10. 10!!! shit its always something. I've been told the roids will make sugar spike and the antibiotics will too. I'm tapering off the roids again and hopefully I'll be off the IV by the end of the week. That being said, I had to buy a glucose meter, and I'm watching my sugar intake. (Dr. Pepper!! WAAAA!!! I miss you *sniff sniff*). But before that started, the day after I bought the meter, I lost it. We turned this place up side down, twice. No meter. 3 days later, I found it in my purse....the purse I looked in 3 times. Meds or age? You decide. Apparently the Mr. IS right...I'm dumb as dirt and clearly half crazy. *sigh again* On a good note, just as I was about to walk out the door to buy a new meter (thankful they're not that expensive....its the strips that are outrageously, ridiculously expensive. $40 for 25 strips I shit you not), I grabbed my purse to get my wallet, and whaddayaknow? There's the meter. Just glad I found it. shake-my-head.
My Mental State and Stability
Some days I'm fine, some days I'm not. I still cry a lot. A lot. I cry because I'm tired of being sick. I cry when I think about all the things that this disease has robbed me off, and not just my health. I cry when I think that this latest episode is partly my fault because, once again (yes, I've learned this time), what I thought was just a bad flare...was not a bad flare. I cry because all the statistics say I'm only going to get worse, never better. Every time something happens, I loose ground that I don't get back. And then I dry my eyes (which is not always easy with the RA in them too), and move on. Whining and crying is not going to change a dang thing. It is what it is.
More Future Possible Changes
Son #1 wants us to move out to San Antonio and live with him and his wife and step sons. They have this big house in a gated community. I dunno. I have issues with this idea. On the other hand, it would solve some of the problems we have where we currently have lived since we moved here in 2006. I have issues, but for some reason, I keep getting this nudge in my spirit that this is a good thing for us. And I have been praying for some time, to be somewhere else. Live somewhere else. A change of scenery, a brand new life. And my son's wife is a registered nurse, that's convenient. Son 1 and his wife will be here on the 23rd to attend my retirement ceremony. I'm sure we'll talk then. I'll keep you posted.
So for now, I'm going to leave you with a song. I listen to it almost everyday. If you've never heard of Gregory Porter, please check him out. I've not found one tune he sings, that isn't off the charts. An incredible voice. This one is my favorite. I believe its an old Nat King Cole remake. It makes me smile. :)
See you soon.
PS. I just want to say that I mostly especially know how very blessed I am. There were so many things that could have gone wrong, that didn't. Statistically speaking, I should not have survived this. And I did. Just like the Pulmonary Embolism a year ago. I did. I survived. I am thankful and grateful to the One who gives me life.
PSS (or is it PPS?) - I've lost almost 25 pounds since I went in the hospital. yay!