Travel Success & Trigger Fingers

It's been a while now that I have stopped taking the vitamin E (400 IU/daily) & it may just be a coincidence but I haven't had any of the dizzy/sick spells in that time. I may wait a bit longer & then try taking one tab every other day to see if that makes any difference.

Went to my daughter's graduation from college last Saturday & had a great time. No problems other than having to navigate over a lot of stairs. But it went well & I'm glad I went. No panic attacks & had a great time on the road going & coming back with my daughter's best friend who has just graduated from nursing school & is actually interested in talking about health-related issues. I also didn't even need to use the large tanks of O2 as my little liquid O2 tanks were enough to get me by. I even turned my tank down to 1 liter & 1.5 liters at various times to conserve & there was still more than enough left when I got home (at 2:00 AM). So I guess I really CAN travel if I put my mind to it. I have an elderly aunt & uncle in IN that I would love to go see as they haven't been able to travel up here much in the past few years. Maybe that will be my next trip.

I'm truly perplexed at what has been happening to the ring finger of my right hand. I have developed a trigger finger & from what I read about this condition, it develops from an inflammation of the tendon bundle just under the finger in the palm & sure enough, if I press there, it is quite sore. I thought this might be a part of the myositis but I asked my neurologist & she said it wasn't. But as I read the blog entries by other people with Inclusion-body Myositis , they complain about the gradual weakening of their hands & how they are unable to grip things very well anymore -- like when trying to open a new jar of something. So I'm confused. My daughter's friend -- the new nurse -- told me on our trip that there are no muscles in the hands themselves, so the myositis would have no muscle tissue to affect. So what are the "pads" of our fingers made of? I think I may post a new thread on the IBM blog & ask if anyone has any experience with hand problems & see if I'm not alone.

In the meantime, I have been knitting up a storm lately. Just made my 1st pair of socks by following the instructions & looking up the technical stuff in other knitting books. And I did it ALL BY MYSELF! (*she says proudly*) I think this frequent exercising of my hands in knitting may be having a positive effect on the trigger finger because when I wake up in the morning after not using my hands all night, I have had less "popping" of the trigger in that finger, & this is when it would happen the most. I go to see an orthopedist at the end of the month for this so many of my questions may be answered then. And yet, maybe not, as I find the general level of knowledge of IBM by most doctors I have spoken with is abysmal. But I have my hopes.

Going to go make homemade gnocchi for tomorrow's dinner at my eldest daughter's house to celebrate a belated Mother's Day, my younger daughter's graduation, & my son's 21st birthday, which is today. We have a lot to be thankful for right now. Well, maybe not for everything. Something came in the night & killed (& partially ate) 2 of my 3 chickens on successive nights, & I was quite upset by this. I am scrambling around to see if I can find a few replacements & to improve the safety of their coop & pen. I feel really sorry for the survivor who seems totally freaked out having seen the demise of her 2 sisters. Life is REALLY tough out there for some species...

Great.

Just happened to read about a few new things for folks to worry about. In the news today it was revealed that for people who have engaged in oral sex with more than 5 partners during their lifetime would experience an increase in the possibility for oral HPV (human papillomavirus) and perhaps throat cancer. If HPV were indeed present in the mouth & throat, the person would be “32 times more likely to develop one form of oral cancer than those free of the virus.” I can just imagine the women (and men) across this country that are reading this in their morning newspapers and spraying out their coffee across the breakfast table. This is certainly going to cause the phones to ring off the desks of physicians across the U.S. today.

Also, I read on the “Worst Pills” website (http://www.worstpills.org/) that several of the medications & supplements that I take daily are on their “DO NOT USE” list: Advair (& therefore, Serevent), Glucosamine & Chondroitin (haven’t started this one, but the bottle is sitting right in front of me), and my beloved, Coenzyme Q-10. Green tea is on there, but probably in pill form & more of a notice that it doesn’t do the things it’s purported to do (as with CoQ-10). Zelnorm is also on there which has been prescribed for me (for IBS), but I never took.

Now, I LOVE science. Give me the cold, hard facts. But this is a bit harsh. Enough data has been collected on CoQ10 to know that it is somewhat helpful for use with heart failure patients. Or, at least that’s what I have read elsewhere. But this group is an arm of Public Citizen & I have a lot of respect for them, so I’m conflicted. Plus, my pulmonologist swears by Advair & has told me time & time again that it is necessary for my asthma control for me to take it, & I have a lot of confidence in his opinion, seeing how he is one the drug recommendation board of every major pharmaceutical manufacturer that makes asthma drugs (they go to him for advice when designing asthma meds, he’s that famous in his field). So, what gives?

Update from last post:

From the Mayo Clinic site: (http://www.mayoclinic.com/health/vitamin-e/NS_patient-vitamin-e) “Neurologic : In rare cases, vitamin E supplementation has been associated with dizziness, fatigue, headache, weakness, or blurred vision (particularly when used in high doses, such as 800 IU/day).” Given my sensitivity to all substances I take, I think this may be what’s been happening to me, even though I only take 400IU/day. I’m going to pass on the vitamin E for a few weeks to see if this is the case. Taking the CoQ10 with the fish oil & food, should be enough “fat” to help it do its job.

BTW, my doctor looked all the way back to 1994 on my test records yesterday & said that my liver & kidney functions have been consistently normal, although my blood count is lamentably low (& she said there was nothing that I could really do about that because of my thalessemia minor). She also said that I had been tested for hemachromatosis in the past (when my mother was diagnosed with it, but she couldn’t tell if I had been tested for the porphyria (which my mother also has & can be hereditary), although my liver tests look totally normal. I will ask Dr. S about this in a few weeks when I see her. (The reason I have been wondering about this is because I have been noticing that the backs of my hands have become heavily pigmented recently (hyperpigmentation). The dermatologist said that this could be caused by washing one’s hands often with strong cleansing solutions. Yesterday, my gastro. said that it could be caused by taking certain medications as well.) (http://www.merck.com/mmpe/sec10/ch123/ch123d.html)

NEW DEVELOPMENTS...

I go to a nursery in Grant Park on Thursday, May 3^rd, & as I am in one of the greenhouses – hot, humid, & sun coming through the opaque plastic – I am bending down to look at the various markers on the flats of plants. Up & down, bending down & up…pretty soon I was feeling pretty whoozy. I went out into the cooler hallway & stood leaning on my cart looking for my daughter. I tried calling her on her cell phone, but she has it turned off. Finally I turn & look for somewhere to sit down. Then I see my daughter. I sit there trying to feel better as she goes off to finish her shopping, but by this time my head is swimming, I’m feeling nauseous & weak like I’m going to faint. About a half hour goes by & I’m no better. We decide to leave. The ride home is awful & my eyes are closed for most of it. The bumps in the road make it worse. I get home, take my BS (blood sugar) & it’s not bad: 116. My BP (Blood Pressure) is 144/69 on the first reading, 140/70 about a half hour later. I try to think back about what I have taken that day. I went to the junior college with my daughter in the morning to talk to one of the counselors about my other daughter's classes, and I was a little breathless when walking. Then we went to my daughter's house & had some lunch. I took a whole Precose tablet (50mg) while I only ate a few small pieces of toasted Italian bread with my omelet. I probably didn’t need all that much. I think I also took some Ranitidine and maybe my fish oil, vitamin E & CoQ10. Then we went to the nursery. On a full stomach. Not such a good idea & much of my blood must go to my stomach for digestion after eating & physical activity is difficult.

Then, a few days ago on May 7^th, I was out in the backyard cleaning out pots & planting tomato plants in them. Again, bending & lifting & it was sunny out but not too hot. I started to feel sick again, but this time stopped immediately & went inside to sit in the cool & relax on my recliner. It took over a half hour for the symptoms to subside. Again, the dizziness, the weakness, & the sick feeling in my stomach. Never any chest pain, palpitations, SOB (shortness of breath) – nothing like that. Again I took my BP & BS thinking I’d see something, but again, nothing. I don’t remember what I had taken that day, but there’s a good chance that I took pretty much the same things: ranitidine & my morning supplements.

Today, May 9^th, I went up to the Univ. of C. & saw my gastroenterologist for the last time (she’s going to Mayo’s) & I told her about these symptoms. She said that ANYTHING we take into our bodies – medicine, vitamins or supplements – can interact & produce changes in the proteins & enzymes in our bodies. I come home & took my Ranitidine, fish oil, vitamin E & CoQ10, and started to feel dizzy again – and this time I was just sitting. I’m finally starting to see a pattern here. On reflection, I have only started taking this 400IU of vitamin E in the past month or so – it’s the newest addition to my supplement regimen. I thought by taking the vitamin E with the CoQ10 I would be recreating the CoQ10 that my vitamin supplier USED to sell but very recently discontinued. So I had tried the ToCo10, but felt sick. I have read that CoQ10 is absorbed by the body better when taking with some “fat” or oil – which is why much of it is combined with vitamin E, but usually only about 20-40IU in each tab. Maybe I’m getting too much vitamin E & my body can’t handle it – especially when combined with the fish oil (1,000mg). Hmm... I’m going to discontinue the vitamin E for a while & see if this stops. I especially want to feel well for my younger daughter's graduation on Saturday (which I’m dreading to go to, given how poorly I’ve been feeling lately). But I’m going with my own private nurse (a friend) so it should be alright. We’re also only going to the evening ceremony so it should be cooler too.

New Directions

My youngest daughter made a wonderful suggestion the other day that gave me one of those moments of clarity where the little lightbulb goes went on over my head. She suggested that I use this blog as a sort of running journal of my illnesses to document them & perhaps suggest that my doctors read it to try to gain some understanding of what I'm going through. I have so many things wrong with me that it makes it damn hard to explain what it is that I feel -- it's just so hard to put it in words somtimes. And try as I might to understand the physiological changes that are taking place inside me, I just don't have the scientific background to really be able to know with any certainty what's really happening (although I'm pretty good at guessing rather accurately).

The question that stands before me is this: for whom do I write this blog (when I do write)? Am I writing this for myself, & therefore, forget about anyone who might wander in here to check this out? Am I writing for an audience that I hope might wander by, get interested & come back regularly to read what I have to say? (I never saw it as that.) Up to now, I really hadn't been able to even keep MY interest in writing regularly here, let alone to suppose that others might be checking in. So no, this blog was mainly intended for my own journaling & now the idea of keeping track of my health journey may even give me some insight into any reoccurring symptoms that when added up might be significant & even helpful in finding ways to help improve my current situation.

So, if you're reading this, be prepared for future posts to contain a LOT of health stuff that might not be interesting to anyone other than (a) myself, (b) any one of my multitude of doctors, or (c) a health science junkie (e.g., a nursing or medical student, etc.).

By the way, if some of what I'm about to write appears to you to be borderline hypochondria, please be assured that it is not. I got the bona fides to back up all these conditions, folks. It's for real. On the other hand, I have very recently sought the aid of a therapist to help me work on my panic/anxiety issues that seem to blur the line between what is happening to me due to the workings of my own body, and that which is aided and encouraged by my mind. I have great hopes for finding some relief there.

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THE WAR IS OVER... (continued)

This is a continuation of my rantings last night. They were actually part of an email I sent to a fellow blogger as we discussing some comments written by a rather conservative reader. I wrote a rather vitriolic comment which was removed, as it should have. The following was intended to explain why I wrote what I did. The name has been changed.

I'm glad we're on the same side here on this. I admire your ability to keep your head in these discussions. I just can't anymore. These past 6 years have been very hard for me & it's made me realize just how intolerant I am! I've come to the conclusion that I just don't think I could maintain any close relationships with people if I know they're politically on the right. I know...that's pretty bad of me, but I'm being honest here. Just like I couldn't respect anyone who chooses to believe in Creationism over Darwinism anymore. Or even religious extremists of the Evangelical persuasion (actually, any religion).

I've barely held onto my sanity through reading my leftie political blogs, watching The Daily Show, Bill Maher, Keith Olbermann, listening to Al Franken, reading Daily Kos & Huffington Post, or Michael Moore. I have a chronic illness so I stay home a lot & these were my lifelines. For reals.

The Carols of this world in all their self-righteous self-deluded smugness about their media-fed vision of this country have had their time & it's over! They screwed things up royally, remember? Why shouldn't we call them on it? They've brought this world to the brink of disaster -- warfare, terrorism, pollution, global warming, etc etc... you name it!

I've lost my cool. I wish I could be more like you, but I can't. I'm too old for this. I marched against the war in Vietnam many, many years ago. I was in Chicago for the 1968 Democratic Convention. I witnessed first-hand all this shit back then and here we are living through a new "fresh hell".

So now you know where I'm coming from a little better. People like Carol will never see the world accurately as it really is. They would self-destruct if they did. Looking at her blog, her feelings are all wrapped up with her father having served in the military & her nice, neat little vanilla-scented Republican world. If they really saw this war for what it was they would unravel. I've seen this with people who have a loved one serving over there. They HAVE to keep up the illusion that this is a matter of honor to serve our country, blah, blah, blah. They were saying the same things back in the 60s with Vietnam ("My country, right or wrong..."). Damn! Won't we ever learn???

Listen, thanks for letting me spew all this madness out here in this email. It was actually very therapeutic! I'm really pretty fairly sane & balanced about most other things... really I am! I think this stuff is what has caused me to seek refuge in my garden & growing things; to create beautiful art & wonderful food. To look to the deeper meanings of life. To the important stuff. The rest is fluff anyway. Life is about love & family & our kids (my are all pretty grown up now). Just like it was for the poor Iraqis, once upon a time.

Take care & keep writing. You're doing a good job. Keep in touch if you'd like. I'm here.

THE WAR IS OVER...

Or at least, it will be. Soon, I hope. The Democrats know that this is what the American people voted them in to do. I hope they get it right or the ca-ca will really hit the fan in 2008.

The past 6 years have left me agog. If it wasn't for The Daily Show, Bill Maher, Daily Kos, The Huffington Post, Al Franken, Michael Moore, and others, I swear I would have gone nuts! Is it just me?? I remember telling the people I worked with in a credit union back in 2003 that the war was a lie and unjustifiable -- I was the only one taking that stand and they ridiculed me for it! Today, the worm has turned. All that flag-waving and patriotic gibberish that was being spouted as some sort of litmus test as to if you were a real patriot or not -- those days are over. Some patriots! They lined their pockets with our savings while they stole our rights and waged war in our name. Shame. Historians will judge these dark years harshly as some of the worst in American history.

And all in the name of God! The Christian God versus the Islamic Allah versus the Judaic Yahweh. Fighting in the name of God! It sickens me to think of the twisting of a beautiful message of love and brotherhood into a justification for going to war. But it's always been that way, hasn't it? Always one group pitted against another. Forget about trying to understand and get along and compromise and compare how really alike we are in so many ways instead of looking for insurmountable differences.

Bush & his ilk are so wound up with all this "rapture" nonsense that you have the Evangelical Christians from the far right trying to send help to & buy up land in Israel so as to speed along the destruction of Jerusalem that's supposed to usher in the resurrection of Jesus Christ. Wow! Do these people believe in fairies, too, I wonder?

I used to teach on the college level before I became sick and I often had Moslem students and became close with a few. I became interested in Islam and as I taught the Humanities (& art history) and I came to understand the essential beauty of this religion -- just like all religions on the surface stand for love and the desire to live a just life. Of course, in practice, things get jarbled. But like so much in life, the good of the majority becomes tainted by the bad of the very few. Just today I heard how the conference of U.S. Catholic bishops in Baltimore decided that as a Catholic, one should not use birth control (don't even THINK of abortion!), being gay is just "disordered" and not a sin unless you act on your impulses, and if you don't buy their whole program hook, line & sinker, don't bother taking communion. Nice. Still, 96% of American Catholics just ignore this, so I see that as some hope. Still, I have tried to come back to the Church, but with such big gaps with my beliefs and their fundamental teachings, I don't think I will ever be able to do so.

I'm so bad at arguing "constructively" with conservatives -- I tend to insult when I should be able to dazzle 'em with some cold hard facts that completely blows their arguments to hell. But that's hard to do, at least for me. So much to remember. I get the general outline down, alright, but I'm a little fuzzy on the details.

More later...