Ok, ok, I know… It’s been a LONG time since I last wrote. But I do have some great news that I still have to pinch myself to believe. I am off the supplemental oxygen that I needed around the clock since about the year 2000! I am using it at night with my bi-pap after undergoing a home sleep study that showed that my O2 level dipped down pretty low once in the entire night, so they thought it would be a good idea to keep me on O2 at night for the boost. But none is needed during the day. We have been watching this for over 6 months so this is no fluke. It’s real. I’m getting better!

Wow. After 7 years of lugging around tanks and being careful not to trip over the tubing, I am FREE!!! I still can’t believe it! And now for the $64,000 question: WHY? Why did I need it in the first place? And why don’t I need it now? What has changed?

Three theories, each provided by a doctor of a different specialty. The first, from my pulmonologist, is that because I’ve lost a large amount of weight over time (50 lbs.), that my body passed back over the threshold where I no longer needed the extra O2. One problem with that theory is that I see a lot of very large people out there in life walking around without supplemental O2—people MUCH bigger than I ever was. Why me & not them? I kept trying to interject the fact that I have Thalassemia Minor and that might account for the fact why my blood could not carry as much O2 as most folks, but my theory was shot done by both my pulmonologist AND a hematologist at the University of Chicago—not lightweights by any measure.

OK, the next explanation came from my sleep doctor. He stated that since I changed from C-Pap to Bi-Pap in the fall of 2006, and had the pressure settings changed to a much higher rate, I was getting more air pushed in & out of my lungs all night long during the past year. He thinks this also changed the “setting” in my brain to allow me to use more of the O2 in just room air. Also, he thinks the reason why I wasn’t taking in as much O2 as needed during the night was because of the Inclusion-body myositis, which may have been affecting the muscles around my diaphragm and lungs and not working enough to process my breathing while I’m asleep. Hmmm… maybe.

Finally, my cardiologist just last week offered her own opinion. She thinks that I might have reduced the level of inflammation in my body through diet and supplements to the point that I began to achieve a better state of health and the O2 usage improved. I also have been exercising much more regularly than at any other point of my life. I work hard to make sure that I eat a lot of vegetables and fruits, whole grains, and good sources of protein, including meat, poultry & fish. I have lost weight consistently over these past 6-7 years and hope to lose at least 50 more pounds.

It’s also true that my diabetes remains under remarkably good control with a minimum of oral medications: Precose to block carbs in my intestines and a tiny, tiny bit of Glyburide to improve insulin production to clean up any excess sugar in the blood. My last Hemaglobin A1C was at 6.1, and before that at 5.9. And I was diagnosed with the diabetes at about the same time as I began the supplemental O2. So maybe what she’s saying could have played a part of the puzzle that is me.

Regardless, I’m happy about this new development, but I’m still not out of the woods by any measure. I’m experiencing greater & greater muscle weakness, especially in my thighs, and it’s getting harder for me to walk any distance without feeling it. This is something I can’t improve. The IBM will progress unmercifully & there are no treatment options currently available. But I take my supplements and exercise regularly and hope to slow things down. That’s what I have to work with & so that’s what I will continue to do.

Been neglecting you again lately…

Interesting thing happened to me today regarding my diabetes. Took 50 mg of Precose in the morning & ate a bowl of fruit (nectarine) & bran flakes, with a little Honey Nut Cheerios thrown in because I was almost out of bran flakes. Then I had a few bites of zucchini with garlic, olive oil & potatoes & a chunk of hard baguette that I had picked up at the farmer’s market. I had an appointment at 3:00 pm at Counseling, so I took 2 big chunks of Glyburide because my blood sugar (BS) was already up to 184 when I tested it before I left.

Later in the afternoon, after I came home, I developed a pain in the center of my back (or a little above), like behind my heart. I have come to recognize that pain in that area means that my blood sugar is plunging. So I checked it & the reading didn’t look so bad, but I KNEW it was plunging, nonetheless. I could FEEL it. So I ate some watermelon & a little something else (can’t remember what right now), and kept an eye on my BS. It continued to go down. Pretty soon I was really feeling awful in the evening, but had no appetite and didn’t want to force myself to eat as I almost felt nauseous. I took my BP (140/74) and it was alright, so I kept taking my BS to make sure it didn’t go too low (it never did). But I felt sick anyway.

I finally took an acetaminophen and a Ranitidine (2^nd for the day), and ate a piece of whole wheat bread toasted with Smart Balance (and NO diabetes meds). Only then, when my BS began to climb did I feel relief. So what did I learn from this?? The pain I felt in my back I think was related to the pancreas (but I could be wrong). I also must not be so quick to pop Glyburide – especially after eating bran flakes. My BS always climbs when I do, but then comes down nicely. I took the extra Glyburide because I had to leave the house and didn’t want to have my BS too high. So I screwed myself up, and it really makes you feel SICK.

I also have been peeing all day. I drank some tea & took my 1^st diuretics at about 4:30 pm, so it could just be from that. Or maybe it was related to the diabetes symptoms.

Bottom line: you just can’t trust the numbers on the meter as that blood is coming from your forearms. The rest of the blood circulating can be much higher or lower, you just can’t tell it yet. Diabetes is nothing to fool around with. I think I better go back to walking on my treadmill again!

BTW, I went to see my primary care physician – who I hadn’t seen in YEARS. It was a good thing and she gave me some sound advice regarding the vitamins & supplements I’m taking (“Don’t take vitamin E”). She also hooked me up with a natural medicines database that is amazing (it’s for physicians) & gave me her password & ID to log in. She thinks that what I’m experiencing when I get those periods of extreme sick feelings (like when I went to the nursery with my daughter), it’s because of a combination of things: my gastroparesis, the meds I take, my diabetes, etc. Yeah, I can see that. It makes sense. Eating enough fiber to keep things moving along nicely should be a priority for me (it is). But now I’ll feel better because at least I have some idea of what’s going on with me when I feel like that.

I also went to see an orthopedic doctor in the past month about my trigger finger. He gave me a small shot of cortisone in the “pad” below the finger & guess what?? It got better!! A-maz-ing!! The pain is gone & the finger only “sticks” in that position very rarely. He said that if this didn’t work, he’d try another shot once & then I’d need minor surgery that he could do without anesthesia & on an outpatient basis. “No biggie” was his assessment.

Otherwise, everything else is ok, but I cancelled my stress test & asked my cardiologist if we could put it off for a while & she said sure, no problem. I still am on for the “home study” though next week to see about my need for extra O2. More on that later…

Had some problems this morning when I woke up – prematurely, due to my daughter’s alarm. I felt sick & immediately knew what was wrong. This has happened before, but not for a long, long time because I’m pretty careful about this, but just as I was falling asleep last night I remember thinking that I hadn’t drank enough water with the final pills that I was taking, namely a time-released calcium channel blocker. This may not seem like a big deal, but when the other pill that I took was a diuretic, this could mean problems.

So here’s the thing: the calcium channel blocker lowers the blood pressure while it makes the heart beat evenly & more slowly. The diuretic removes excess water from my system, so I become rather “dried out.” This makes the effects of the CCB all the stronger & I feel sick. Specifically, I felt nauseous, chills, shaky, & like I was going to faint. Every heartbeat was like pulsating tiny little explosions in my blood. OK, it’s hard to describe, but it feels just awful, plus it’s scary. I didn’t dare take my BP at the time. I did, later in the morning after I had drank a lot of water & ate some crackers & it was 112/57 then. Then about 5 hours later it was at 127/67 (P72) & I was feeling much better. But my ability to sleep had been shot. I catnapped throughout the morning & was left feeling weak & washed out.

I have been taking 2 doses of my diuretic each day – 20mg during the day at some point (usually late afternoon) & then 40mg at night before bedtime to really help my kidneys rid my body of the excess water. But now I realize that I was setting myself up for this to happen if I didn’t take care to have enough fluids in me. It was probably be a lot smarter for me to take my big dose during the day, but that’s not always practical. For one, it helps your body a lot if you can put your feet up for a half hour or so when you take it so the blood isn’t fighting gravity to get up from your legs & feet to your heart & kidneys. Also, it’s not always handy for me to have to find a bathroom & pee my little heart out during the late afternoon/evening hours. These pills have a 6-hour window in which they work. So I was putting it off until night when I was naturally reclining & asleep. Sure, you’re probably thinking, but then you have to get up in the middle of the night & go pee. Well, yeah. But I haven’t had a continuous night’s sleep anyway since before my kids were born & my baby’s now 21! So I’m going to get up to pee anyway.

Another issue occurred to me as I was lying in my bed this morning. I have Thalassemia Minor – Mediterranean anemia - & therefore my blood has a decreased capacity to carry O2 in my blood because my iron level is so low & the red blood cells are misshaped. Add to this problem the problem with my lungs – they’re restricted & obstructed by my body make-up & asthma – so I don’t take in enough O2 to begin with. (I still believe this is part of the reason that I needed supplemental O2.) It all seemed so clear to me, in the early morning hours. It all seemed to come together in my mind. The meds I take both help & hurt me at the same time. What I mean by that is that they do what they’re supposed to, but they also carry some nasty side effects that can make me miserable. The CCB & the diuretic are necessary to help lighten the load on my heart in which my left ventricle is struggling to relax & allow more blood to pump. But if the meds dehydrate me too much & the CCB’s effects are amplified because of my low fluid levels & slow my heartbeat down too much, this could be disastrous. So I must walk a narrow path, once again, health-wise & be vigilant with my meds. Just like every heart patient. Just another thing to worry about. The ticking time bomb in our chests. Hell, yeah, it scares me.

BTW, I have asked my cardiologist to consider lowering my CCB dosage several times, but she doesn’t seem to want to budge on this issue. To begin with, I was taking 300mg a day, now I’m at 180mg. I’d like to go down to 120mg, but I do notice my BPs creeping up in the afternoons & evenings. But in the morning, they’re all at 110/60 or lower even. She says that’s just fine & not too low. So be it. I trust this woman a lot & put myself in her hands when it comes to cardiology. She’s also been very supportive of my use of vitamins & supplements, something most other doctors just sneer at still. But they’re coming around, as I’ve written about here previously.

So I think I’ll change my meds schedule so that I take the large dose during the day & the smaller one at night. As for the CCB: more water, of course. I don’t want a repeat of this morning. As I sit here I feel weak & washed-out. I need sleep & rest badly. I’m going to take it easy today & see if I can’t get some.

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.