Is it a coincidence that I write most blogs on Sunday? It must be, because I have totally, completely, lost track of time. Not only the time of day, but the date, and even the year. Yes – yesterday I said it was 2100…
If you lived the way I do, you wouldn’t be surprised.
I cannot get to sleep until 2:30, 3:00, sometimes even 4:00AM or later. I set my alarm clock at 6:00AM, as I have to take my thyroid medication then at the latest, because I have to wait four hours before taking anything with calcium, and I like milk (2% only) in my espresso and butter on my fette biscottate. No substitutes, sorry! Then, of course, I fall asleep — deeply for the first time — from about 7:30 or 8:00AM to 10:30. I think I go downstairs — like a zombie – to have a fast breakfast, which Guido helps me with in case I drop something or drink the wrong stuff. I do have to prepare my own espresso, as he has not learned yet how to operate the machine… After that it is back to bed, not before checking my email to see if Dr. Sivieri has replied to my latest message. Since he is so busy, and my next appointment is not until the 24th of March, we communicate by email. He has set up a protocol of 200 emails for $180.00. I may reach my quota soon ;( It is undoubtedly better than nothing, but not good enough. It seems I need to ask him clarification for almost everything he tells me to do…
Afterwards it is back to bed but not back to sleep. I lie down like a zombie again. It is hard for me to walk around. I do try to use the treadmill whenever possible, but sometimes I cannot even do that. Some well meaning people (I no longer know if I can call them friends or not) tell me I have to keep trying. Even Guido did, until he realized that I DO try. Nagging will not help. It never does, we all know 😉 I am the one who wants to get better soon.
But — if the doctors continue to screw things up it will take forever to get there. As an example, because of the latest snafu, the results of the tests that got to my current specialist, Dr. Sivieri, were not complete. Still, he said he could deal with it and gave me a new dose of T4. After a week, he got the results of the ones that Dr. Pennington (or his nurse) had “forgotten” to get done the first time. Dr. S then saw that my Reverse T3 was “very very high”, as he put it. After several email exchanges, he agreed to have my T3 dose increased. He was afraid that I would be spending too much money, as I had recently had to have a refill of this medication with the old dose. I made him aware that we have a good drug plan, and that our health is more important than any money. He faxed the prescription to the pharmacy on Friday afternoon.
I dutifully called the pharmacy on Saturday morning to see if they had received the fax. They had, but the compounding section of the pharmacy is closed on Saturdays, so I’d have to wait until Tuesday. Sure enough, I had caught (or been caught by) another holiday – Monday. It has something to do with dead presidents, as Valerie put it. They must have heard my sigh, and since this is not a “regular” pharmacy but an apothecary, now called Village Green, they asked me if I needed it sooner. I only told them I want to get better, so they asked me to hold and came back to tell me that they would do it for that same afternoon. That was enough. They did, and I have it and I already started taking it today!
You must understand that this is not a medication that they take out of a huge bottle and put in a smaller container. No. This one needs to be compounded. To quote a reliable source, “Pharmaceutical compounding is a branch of pharmacy that continues to play the crucial role of drug development. Compounding pharmacists and medicinal chemists develop and test pharmaceutical formulations for new drugs so that the active ingredients are effective, stable, easy to use, and acceptable to patients with unique or unusual medication needs. … Physicians may prescribe an individually compounded medication for a patient with an unusual health need. This allows the physician to tailor a prescription to each individual. … In the United States, compounding pharmacies are licensed and regulated by their respective state like all other pharmacies. National standards have been created by Pharmacy Compounding Accreditation Board (PCAB).”
Any other chain or regular pharmacy would not have done it because they are not equipped for compounding. And if you don’t know what T3, T4, and Reverse T3 are, it does not matter much. They have to do with the thyroid function.
Continuing with a list of my daily activities, I am now close to 1:30 or 2:00PM. Guido asks me what I want. It is generally a salad or a sandwich, and he starts preparing it. I go downstairs and have lunch. Then, back to the computer for a few minutes to see what my daughters and my friends (106 only in Facebook) are doing, and to read all the newspapers I subscribe to, briefly, as I don’t have the stamina for much. Besides, the news is very depressing nowadays, in every area. Enough said! Back to bed for maybe a brief nap, and then I realize it is almost 5:00PM. I have to get up, take a shower, and start dinner, with Guido’s help. He cannot cook a whole dinner by himself. I make it a point to always take a shower and get dressed, even if it is for dinner only. I become “human” again. By now, I am more awake, although still tired and with no energy and dizzy and out of it. And I still have an occasional ocular migraine, as I had today.
I have extra help now! Yesterday, my other neighbor, who is from Taiwan, called to tell me she had been away for some time visiting relatives, and she had seen the Peapod (Giant) truck making a delivery here. She wanted to know what it was like, as she was thinking of using it herself sometimes. I told her it is OK, nothing like going to the store, but it helps. When I mentioned that they had not brought me the kiwis I had ordered (and paid for), she said she’d bring some since she had many that a friend had given her. She had to wait until Guido came back form the pharmacy, and she brought nine kiwis. I had told her I don’t need so many, but she felt bad that she has not been helping me much. She insists on doing it, so, rather than having yet another person cooking dinner for us, I told her to let me know when she is going to Trader Joe’s, as she goes there often. I’ll give her a list, and then she can buy stuff for me. It is really a better deal than all the “friendly” dinners. And she lives next door, so she is not going out of her way. She does talk a lot, and since I was upstairs in bed, I could hear her talking to poor Guido, who had the bad idea of telling her to come in and sit down – although I think he later regretted his good manners, but I was in no shape to go downstairs, even though it was almost 4:30PM.
You can tell that I feel bad about all this. I don’t like to ask people to do things for me. It has been a year and a half since my surgery, and who knows how much longer it will be. There are a few loyal, very loyal, friends, but I don’t want to put the burden on others. I also don’t want them to feel they have to do it. Nobody needs to feel obliged. It is only when they do it because they truly care that it helps. And I can tell.
After dinner, I come upstairs to my computer, my lifeline. I also get most phone calls at this time, as friends know I am done with the daily duties, as small as they are! They are still difficult for me to perform. This is not an easy road. I know, I feel, that it will sometime end and I will be able to be my old self again or, as a former student who called me the other day said, “a tiny ant” (una hormiguita). That’s what I was to many who saw me running around all the time.
It is 10:48PM now, and Guido is unloading the dishwasher. Soon, I’ll go downstairs to put some things back where they belong, as Guido is still not too sure about it. Then, to bed with my Kindle. Time to read, until I feel Morpheus’s call, if at all. Funny — I have not been watching films, even though I have about 500 in my Netflix queue, and I love them, nor any TV, although the only programs I used to watch were only the cooking shows.
Do not forget that, in addition to having the thyroid removed because of cancer (so they say…I am not too sure now that it had to be removed completely), they had to remove two parathyroid glands. These regulate the calcium. I have two left, but the calcium needs to be constantly monitored too. What else???
This is my life; this is my day, a repeat of many days. It only changes when I have to go to see a doctor. I realize that it has taken me forever to write this, but I feel I had to. I didn’t know what I was going to write until I sat down and started typing. I’ll reread it fast to make sure there are no gross errors, and that I explained things clearly (did I?). Then, it will go to you, and it is yours, all of it, if you get to the end.
Yawning already? So am I 😉 Good night and good luck!