Tuesday, September 1, 2009

Summer’s Over…Hurray for Fall!

Am I Back?<< >>Update for all you guys who asked

First of all, I want to say “Happy Birthday, Scrunchie! Grandma loves you”.

I just got done listening to this last Saturday’s Wait, Wait…Don’t Tell Me show on NPR. This particular show was a compilation of some of their favorite show segments and it’s really a good one. The first story in the program is about hand knit sweaters for chickens, but the real story is Mo Rocca’s comments during the segment about his hating homemade sweaters because they are so itchy. Hit this link: Wait, Wait if you want to listen. Make sure to go to the August 29, 2009 show. After you listen to at least the first 5 minutes or so, which is the part of the show that the sweater stuff is about, there is a video where Mo Rocca meets some folks from Ravelry who give him a sweater and Franklin Habit give’s Mo his “It Itches” book. That link is at: Wait, Wait Extras and click on the Knitter's Revenge story 1/2 way down the page. I personally found this whole thing hilarious.

Since my hands are so messed up and there’s no way I'll be able to knit anything for my new grandbaby (or anything else) before the end of December and I have high hopes of being “fixed” by the 1st of the year, that I’ve signed up for a new KAL. It’s run by MMarioKKnits at MMarioKKNits MMystery Knit-A-Long. I like the folks on the list, so this should be a fun KAL. I think it’s supposed to take 8 weeks, which is just right, to my mind.

Okay, this last part is personal health stuff and so those of you who don’t want to read about why I’ve been “missing in action” for the last 15 months, feel free to go on to other things. There have been a lot of questions coming in about my long absence from blogging. So, here it is for anyone who wants to know.

Today is my granddaughter’s 5th Birthday. Time flies. It’s true, the older you get, the faster time goes by. I never thought I would be 50, either. Old age is NOT for wimps. In my case, I was a mentally and physically active person until I hit 40. For some reason, every part of my body started rebelling. Turning forty and feeling like crap makes you start thinking of your future, and so I was determined, by age 45, I would fully turn my life around, you know, start making healthier lifestyle choices, get more exercise, realize some dreams, etc. It’s not like I was making horrible choices and doing stupid stuff, it’s just that I knew I could do things better and, then I would magically make myself feel better. So, I got all the surgeries that I had been putting off, quit drinking alcohol, cut back and almost quit smoking, cut back on processed foods, etc. For some unknown reason, I kept getting worse and by the end of 2003, I was getting pretty bad. Maybe I needed all those food additives and preservatives… Who knows? I became a grandma in 2004 at age 45 and I was unable to do much "grandma-ing" because I was in bed most of the time with debilitating pain and fatigue. This has really pissed me off.

Another problem with figuring out what is wrong with me is that I was adopted when I was an infant. There was no familial medical history given, so as far as I know, I might not even be human :) Now THAT wouldn't shock in in the least. The only thing I know is that I was 21 inches long and weighed 5 pounds - 1 ounce and had some digestion problem that kept me in the hospital for 2 months before I could be taken away. Two weeks before my adoptive mother died, she told my nephew that my "brother" was born to a prominent Minnesota family that caused a scandal so he was given away for that reason and I was either kid number 5 or 6 and I guess they didn't need another mouth to feed, so that's why I was given away. That's all I know. I was finally able to save up the $300 to send into Lutheran Social Services to see if they could dig out a medical history for me. There's no guarantee, but it's got to be tried. Hell, it costs over $600 for a chance to maybe meet the family, but that's just too steep for me and I DO know that nobody from my biological family has allowed my birth certificate to be made public so chances are I'm a secret that they want to remain buried. BUT, I have a son and 1-1/2 grandchildren that deserve to know if there is some weird genetic traits or diseases out there hiding in our biological line, so that's what I am fighting to find out.

Anyway, I was tested, probed, operated on more, misdiagnosed with a plethora of crap, until I finally said “STOP the Madness!” and did my own research. I added up all of my signs and symptoms, and realized I had obvious endocrine issues and decided to see an Endocrinologist. In June, 2008, I had a bunch of tests and it was found I had below-normal cortisol, ACTH, and a bunch of other endocrine hormones that were pretty low. I had 2 more tests to confirm those tests with even lower-level results. The Endocrinologist’s diagnosis was that I had gone through menopause. Hmmmm. No shit, Sherlock. I had a complete hysterectomy in 2002, so I already knew that. So, I talk to my PCP and he’s thinking that I need to see a different Endocrinologist and get my pituitary looked at because all the blood tests pointed in that direction. I got a brain MRI and that confirmed I had Empty Sella Syndrome, which is basically a deformed pituitary gland and it can either be totally benign or it can cause pituitary hormone issues. The second Endocrinologist said I was fine and that the low ACTH and Cortisol hormones were caused by my taking narcotics to combat the pain. Hmmmm. This confused me since I had all of the problems long before I started taking any narcotics, but you gotta believe the specialists, right?

SO… I go to plan B. Since there is nothing “wrong” with me except for low pituitary and adrenal hormones, pain, hair loss, low-body temp, heat and cold intolerance, weakness, etc, yada, yada, I figure it’s got to be all in my head, Right? All I needed was some mental and physical therapy and I’d get going again. So, I went through 3 months of intensive therapy. I was told that I was not crazy or depressed, I was doing all of my lifting and work correctly so I wasn’t injuring myself that way. I could, with enough pain meds, exercise, so that was good except for the pain. I could perform biofeedback stuff and make all of the “numbers” get into the perfect zones except for the “pain” probes. I did yoga, reflexology, and any number of non-traditional treatments. After a few thousand dollars, several hundreds of miles driven, and a lot of time and effort, the only thing I was doing wrong was taking some narcotics for pain relief and that if I stopped taking them, all of my pain and problems would disappear.

My PCP and I dropped my narcotics dose by half and, of course, I didn’t have any improvement. It wasn’t as though I was taking giant dosages to begin with. The next step was to go to see the Big Guns, Plan "C", because by this time, I was mostly bedridden. Don’t believe anyone that tells you that they would love to be able to lie around every day and read, sleep, and watch TV. They are liars. Anyway, I got an appointment at the Mayo Clinic in Rochester, MN at the beginning of May, 2009. After 11 days of testing, seeing 5 or 6 specialists, and spending 10 nights in a hotel, I found out I have low ACTH, Cortisol, Growth hormone, and assorted other low levels of hormone things. The same results from the tests I had in Duluth 10 months earlier. Big surprise. The Endocrinologist said that Hypopituitarism is rare, so I most likely didn't have it, and my problems were from taking narcotics for pain. My Mayo Internist didn’t really agree with him, but he’s the “specialist”. So she gave me an Estradiol patch and said it would help me with my temperature intolerance and the loss of muscle mass. I started cutting back on the narcotics for pain to see if that is what’s causing the pituitary problems. A month later, I sent in more blood tests and my ACTH and Cortisol levels are still below normal. I kept weaning myself off of the narcotics. I went back to see the Internist at the Mayo and, since I was getting worse, she doubled the Estradiol and prescribed me Wellbutrin because that is supposed to improve my “energy” level. Then, new issues arise… I feel like puking all the time. I had to go see my PCP and he said to wean myself off the Wellbutrin and if that didn’t work, to get rid of the Estradiol, and he also gave me a prescription for some killer anti-nausea stuff called Zofran. It's an anti-nausea drug for chemo and radiation patients and it works great. By this time, I am off the narcotics, the Wellbutrin, and the Estradiol and am still getting sicker. I called the Internist at the Mayo to let her know that I had to quit the narcotics, Wellbutrin, and Estradiol and also to ask her how long I had to wait after quitting the narcotic to check my ACTH and Cortisol levels. She wanted to talk to the Endo doc and my PCP first and would call me the next day. So, I talk to her the next day and it was like speaking to a stranger. She told me I had to wait until the end of September and take a 24-hour piss test to check my Cortisol levels again, which was totally different from the tests she had mentioned me getting when I spoke to her the day before. This test will tell them nothing about my ACTH level, so I’m not sure WHY I need to take it. Anyway, something was very different for some reason and I needed to find out what had changed down there at the Mayo. So, I made an appointment with my PCP to find out exactly what had happened since the Internist had spoken to him before calling me back the next day. I’ve been seeing this PCP for 32 years and we know each other quite well. I came straight to the point and asked him if he thought I was crazy, or depressed, or attention seeking, or had Munchhausen Syndrome, or was a hypochondriac. He said that he knew I was sick and that I was just looking for answers so I could get myself better. Hell, he was the one who said that the blood tests pointed to a pituitary issue in the first place. Well, that made me feel so relieved that I started to cry, which in turn, pissed me off. I HATE crying. Then, after he passed me a box of tissues, I began thinking of the "side effects" of having below normal levels of these hormones and I asked him if, even though my ACTH and Cortisol was below normal and that might be caused by the narcotics I had been taking for the pain in the past, could I still have a "crisis" if I had some trauma, like hitting a deer, getting a tooth pulled, or having surgery? If that was the case and I hadn't been "officially" diagnosed by the Mayo's Endo God, what should I do in a case of trauma or stress? He said, “Wave your wrist that has the Medic Alert Bracelet on it at the medics”. Hmmm… I guess I need to get me one of those Medic Alert Bracelets. I sure wish somebody had bothered to tell me how serious this condition was no matter what was causing it. I was only concentrating on fixing it, not worrying about "what if''s". I mean, it's not like I was told I had cancer or something like that. I didn't think it might kill me. He gave me a nice drug called clonzaepam for "stress" and to help me sleep. It works pretty well. At least it shuts down my mind enough so I can focus and fall asleep. So now I wait for 4-1/2 weeks until I go back to the Mayo for my “last stand”. Wish me luck. The thing is, this can be fixed so easily and safely. I just don’t understand why any doctor would make a patient suffer for so long with a disease with potentially life-threatening consequences like this, but unless I can find a doctor to write out the prescriptions that I need, I’m screwed. The Internist has claimed to be on my side and maybe she or my PCP may be willing to go over the Endocrinologist’s head, but with malpractice problems and whatever liability reasons out there that I would know nothing about, I haven’t broached that subject with them yet. There are a few places that I have been in contact with that I have had some preliminary work done where I can get the treatments I need, but they are out of state and don’t take insurance and I was hoping to get the help I need through “normal” channels. But, I am ready to go to “Plan D” as soon as possible if “Plan C” falls through. I can get a loan somewhere and really, what’s money worth to me if I have an adrenal crisis and die? I can either spend $2000 to get well or $2000 to get cremated. That’s a no brainer in my opinion. It just shouldn’t had to be this painful and difficult or take this amount of time to resolve such an easy (if rare) disease. So, that’s the story with most of the gory details omitted. I have many friends and acquaintances that are suffering with these "invisible" type illnesses and I have been on my soapbox trying to advocate for them as best as I can, but it's an uhill battle. Plus, this medical crap is just plain boring to write and read about and nobody really wants to hear about it.

Anyway, I hope to have some fibery stuff to write about soon. Take care and enjoy this beautiful time of year. The snow and cold will be coming soon enough (I don’t mind it because I like winter, too) but I know a lot of people hate it. I’m sending all of you good vibes and hugs.