Monday, August 11, 2008

*My* Myasthenia, and what else for the Ragdoll?

FYI: This article contains medical information, with descriptions and illustrations that some may not be comfortable viewing or reading, but I have kept it to as near a minimum as is possible.

I have bounced you and me around so much these past two weeks, now I want to try to gently bring us together, whether we understand all that is going on or not. Ready?

Basically, I think telling about my first day going to the infusion center pretty much covered everything involved with that. Maybe, maybe not, though. I was scared beyond measure to increase my infusion rate, but like everything else, I believe God is in control, and I believe He was looking out for me that day, well each day, keeping me safe and comfortable. With Him in control, there are a few things I am considering, so hang on.

We finished up that week then had appointments for the week following, first with Gubin's nurse on Monday, and then with Franklin, my Primary Care Physician (PCP) on Wednesday. Well now, that about Gubin was not with him, but for a nurodynamic test to determine the cause of my total incontinence. He had tested me several years ago, and told me it was due to my diabetes, so what's the story now, except that it has become much, much worse, and driving me insane with the uncontrollable urination! He told me back then that he was afraid take any surgical measures because of my MG, and for me to do anything I could to cope with it. At one time, he had me trying self catherization, but there was *some reason* it was more than usually hard to do (the caruncle was blocking insertion?), plus the attempt was so painful. Couldn't keep trying to do that. There is only so much of that you can try to do. Therefore, I managed with the disposable products, and did fairly well, until umm about a year ago, then WHAM!! No help whatsoever, and I planned to seek Gubin's help again once Jim had his clean bill of health. I've had a couple of anesthesias and tolerated them well (one being the implant of my port), so am willing from my end to possibly attempt whatever Dr. David may need to try. Call it desperation.

Plus, I have tremendous confidence in Dr. David Gubin. I had used him with confidence with those multiple stones equaling to six lithotripsies to avoid any surgical procedures on me, one of the stones was large and very stubborn.

Jim then used him with his prostate cancer surgery, using the Da Vinci robot.. Actually. he used it twice.
The first time Gubin encountered a twisted, fatty mass (an arm shown clamping the fatty mass.), and he had to curtail the operation in a conservative measure to prevent any spread of possible infection to other parts of his body. Following the subsequent surgery a few weeks later, he gave Jim explicit instructions, and told him if he would follow them he would be back to normal very soon. He was, and is feeling really good today. Good team work.

So, now it was back to my turn to check in with him because things were not going well with me at all. This test was the first thing he wanted done. He said he could go no further without knowing where the problem lay. Okay. I say I had the test done earlier, but he doesn't remember (records?), plus he was so pleased with Jim's
Cancer Free results, that I think he was just a bit cocky that day we saw him (happy?). Hey! Coming up Cancer Free can warrant anyone a bit of cockiness for a few moments. Gubin is a doctor with a very serious attitude, and can come across initially as all business, when in fact, he IS putting all of his attention on you and your case. I appreciated that in him. I really am looking for that seriousness in him Thursday as he and I discuss what will be done with my thrombosed urethral caruncle. I want to be well prepared. They are treating it with an estrogen cream, 4gm daily, and his nurse said she would send something for the bladder spasms which cause an increase in the pain, bleeding, and urination. I will be SO glad to get all of that started and see how much affect it has on some of the pain, and will allow me freedom from conventional pain medicine. The word *thrombosed* has been used here, but another word used that might also be understood in engorged. Applying pressure on the caruncle from outside the bladder causes a flow of bleeding with urination around it, and much discomfort to put it mildly, or plainly, causes a lot of pain!! All I can say is I am glad the estrogen only has to be inserted once a day!

Additionally, part of the tests last Monday was an abdominal CT done in his office at the same time to coordinate with all the other tests. All of this showed a couple of rocky kidneys! Now, how many in each kidney, I do not know. The last time, it was four between the two. I'll find out Thursday, and when the first lithotripsy will be scheduled. Aaaaargh, what a nuisance!! So, that is what my appointment was for last Tuesday, one week ago today.Thursday, I see him for explanations and scheduling appointments.

Wednesday, it was back to Memphis, this time to my PCP. I was looking forward to this one, to Arthur Franklin. We had soooo much to tell him
to bring him up to date. Then it came down to serious talking time. He asked me if I could have just one thing back, what would it be. It did not take long for me to come up with my answer, and that was, "my legs." It is my legs (and arms, which are involved with that) that prevent me from doing most anything. All I can do is enclosed within my arms' reach without any help from the rest of my body, especially from my waist down. I cannot even lift my feet an inch off the floor whenever sitting in a chair as in Dr. Cauli's office that day, and they may as well have been cast in stone. Or, as I've heard all my life, heavy as lead. I'm not a fine connoisseur of lead, but I guess it must be pretty heavy.

My answer led him to take the step I have been waiting for so long. I call it the Big P. Ashley calls it my Pregnant Pills. Actually, it is my prednisone! Drop it! Down, down, down, down! Dropping it by 20mg per day, down to 40mg daily until I see my MG neuro in September. That has been five days ago. How has it affected me? The pain is more pronounced. Harder to manage. I do not know if it is the cause, but my eyesight has been worse yesterday (what time I was awake) and today, but I think I've gotten it under control a bit better today than it was yesterday. I *did* take 15mg of mestinon a couple of times yesterday and today, whereas I have not been having to take much of it at all since going on this new regimen. It is so hard to judge since I have this kidney infection, and that affects my MG tremendously, just as it does with the diabetes. Oh, yes, my skin is much, much more sensitive to touch. It hurts for my legs to touch each other, and between pain meds, it hurts for the cover to lay across my body. This is not new, but the depth of the pain definitely is worse. I'll just keep an eye on things. On a positive note, it should help my hard to control diabetes.

I hope I have included everything. If not, this is enough reading for now, right? Right!

Tomorrow. Another favorite of mine for almost twenty years now. Schnapp! Off to Memphis we go again.

For an upbeat closure, to me at least, and I hope you like it, too. My trip to the beauty shop Saturday!

Striving for a world without Myasthenia Gravis


Jocelyn said...

lidamatlkinglenwiniounrrdialograophotersRagdoll This was quite a posting. I know it must have used most of you strength. It did bring things up to date and I appreciate that. Sounds like you are really having a round with the doctors. Have you tried cranberry juice for your kidney stones. It worked miracles for my dad. Hope your trip to Memphis today is a good one.

ragdoll said...

Ha ha! That is why it took me so long to wrap it up, and get it posted! Knowing all that was going on, I thought it easier, and easier to understand by keeping it until they appointments were all completed. Now to wait till Thursday for the urology appointment about the lithotripsies, and whatever else. :-)

You are getting better. Just hang in there and keep on trying till you get it.

See you later
Ragdoll Billie

flickrlovr said...

Wow. Just reading that first post and seeing your beautiful smiling face in your pictures inspires me. I am so thankful to be blessed with my health-I recently had my (very first) surgery last week and it has made me even more thankful for my mobility and health. I hope that your Thursday appointment goes smoothly, and I hope you're able to find some relief soon.

(Here from AllMediocre, by the way...)

Ragdoll Billie said...

flickrlovr, thank you for dropping by, and especially thank you for the comments. I, too, am thankful for your blessings of health and mobility. You have no idea how your comment "beautiful smiling face" struck me! The steroids have drastically changed my appearance, and I have had a difficult time recognizing, and accepting my appearance.

Please, do come back again very soon. I have not quite figured out AllMediocre, but I am trying. It was exciting to me whenever I found it.

Ragdoll Billie