Not Forgotten

Last night was an intensely bad one for me, but this morning, after recovering from the drugs that I took to counteract my symptoms, I feel remarkably better. Well enough that I finished up the bracelet that I pictured in yesterday's blog (except for the closure... I really need to hunt down my box of buttons which is who-knows-where?) and am going back to embellish the green/red one more. I thought at the time that it needed more but didn't trust my instincts. Now I know that I was right and will "fix" it. As Myra Wood said in the class that I took from her last year, "More is more." So true when it comes to beading. You know when it's time to stop, and there's no reason to limit oneself based on preconceived notions of propriety.



When I feel better, I am intensely lonely. As always, those who are worth talking to are at work during the day, and I don't want to invite the "crazies" into my personal life. I can call or e-mail messages to my friends and they respond, but in the evenings when I tend to feel awful and don't want to talk is when they call. And my response makes them feel bad. So the number of personal contacts that I am having are becoming more and more limited.

But then there are the surprises. This morning I stumbled out of bed, still hung over by the Neurontin that I chose to take last evening, and let the dogs out of the front door. There on my doorstoop was a small square brown-paper-wrapped package. "Huh?" I thought? I've already received everything that I've mail ordered. What's this?

And there I had it. A book and card from Vennie - "The Best Friend in the World" it's called - but more important than the gift, the sentiment. I burst into tears. A physical manifestation that somebody cares about my trevails right there on my front porch, and then on my kitchen table.



I've scanned the book and think I'll read it all at once, then keep it by my bed and read one section at a time every night before I go to sleep. To remind me that even when I am physically alone, I am not alone in spirit.

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One of the most difficult things about the kind of illness I am dealing with is knowing when to let my body rest and when to start to push back. I'm at that place right now. I know that I tend to get ill - including fevers - every time I exert myself, but my "good times" when my mind is active and my body a little more willing to work can be measured by the hour now instead of the minute. Don't get me wrong; I'm not ready to run a marathon or even contemplate a shopping trip, but knowing that I need to change my bed and put away the laundry I did the day before yesterday is not enough to bring me to tears. I'm even thinking about putting on make-up before my therapy appointment today.

This go-around with illness has been remarkably different than those of the past. Then they were mostly about Crohns Disease proper and weight-loss went along with the package. Now I'm dealing with other auto immune issues like Eyrthema Nodosum and terrible chronic fatigue as well as flaring Fibromyalgia along with the Crohns, and also the side effects of the Cimzia. I'm able to eat. I'm unable to move about much. And I'm bored. End result? Eating too much and weight gain. (I also, in all fairness, don't know what effects the various drugs I'm taking have on weight, but I don't want to use that as an excuse. I know my transgressions of the past week.)

Which brings me to exercise class. What to do?

Since attending the wedding with Eric last weekend, I know that I might be able to get a good hour or two out of the home before becoming physically and mentally incapacitated enough not to feel safe driving. I know that I am bored and lonely and would love to be amongst people, many of whom already know about my health challenges so I don't have to explain and I don't need to be secretive. And I know that I desperately need help with my eating.

But is Slimmons a good idea anymore? I'm not sure. I lost my standing there when I went "Scholarship" and don't feel comfortable defending myself against inquiries that are out of line. Like Richard's line of questioning about my sex life the last time I was there and was clearly too ill to either have a sex life or mentally acute enough to respond with a quick "Quid Pro Quo," thus silencing him. I also know that even before the current circumstance, my only standing there was as a hood ornament. I lost the weight, I was the big number, therefore I was welcome. Well I'm up 10 pounds now and don't know what I'm going to do. I really don't know if I have the fortitude or the physical stamina to get it off again, and that brings my position at Slimmons even lower.

With others at Slimmons, they have been put to use in other areas (like the Retreat or the Cruise or the radio show or the P.E. in School campaign) so when they started struggling, they still had some value to the operation. Me? The only times I've been asked to do anything was when X- had me doing the "Database to Nowhere" on a volunteer basis and I was expected to watch and keep silent about things going on that I considered unethical (and I did maintain the secrets which bothers me to this day) until I quit, or when Richard needed somebody in front of the camera that he could crow about. Again, it's all about the number.

So I don't know. I feel like some movement and some social interaction might be good for me right now, as limited as it might be, but I don't know how to get it started. I do know that if something untoward is said to me again at Slimmons (and Richard knew he was being inappropriate even as he was questioning me), I will have to leave and never go back again. Would that be a bad thing? Would that be a good thing? Would it not really matter in the scheme of life at all? And if I left, is there a place for me in another setting?

LATER:

A therapy appointment behind me and the answer is clear. I am not ready to go back to exercise class at this point.

Dr. M- pointed out the following obvious facts which I know but got lost in my health drama:

1. Richard tends to get inappropriate in his line of questioning when he is feeling uncomfortable in social situations. With the way I'm feeling and must have looked that day when I made my way into class, it must have really thrown him for a loop. Ergo while there is no "fault" in this situation, there is a cause and effect, and I was the cause.

2. I have a long history of just picking up and going, before having permission from health care providers, when I want to go back to Slimmons. The fact that I am even questioning whether it would be appropriate for me to return yet (every time I get physically active, it results in a fairly high fever) is a strong indication that I should not be going.

Well, the pressure in that department is off, but I'm still scared to death about my weight gain. I know from experience that my mental health is directly tied to my body size and I don't want to return to the place from where I came.

Los Angeles Times Article

Well, it's happened. I'm published for the first time in the Los Angeles Times effective this morning, Monday, July 28,2008 in their Health Section.

(Click on article to enlarge)

This piece evolved from an emotional e-mail written to some friends a year ago because of frustration in my ongoing battle with chronic disease, undiagnosed symptoms, and the erratic nature of visiting my various "A-Team" physicians who often seem to be engaged as much in a battle of egos amongst themselves as in a pursuit to "help" their patients. The specific event that triggered the e-mail from which this developed was the fainting spell that I had at Slimmons in the middle of an exercise class (I had been fainting daily for close to a week at that point, my personal limit of going down being two times a day) and being forced to go to the hospital via ambulance and paramedic.

Those who know me know that I hate paramedics. I am none to crazy about ERs either or doctors in general either.

Don't get me wrong. I know that the doctors I see are amongst the best in the world and I am lucky to be included in their practices. With most of them, you cannot call off of the street and get an appointment. You must be referred by other doctors to even be considered.

Additionally, most of them are very nice and well intended men. But having been sick for so long and having been on disability now for over 4 1/2 years, I've hit my limit. I'm tired of living in poverty and relying on charity to get by. I'm tired of filling in my day with daytime TV and hiding from those other people who are not working long term and who don't have a brain in their heads or life direction. I'm tired of getting projects and ideas started to fill in my time, only to have my health take a turn for the worse and have to give up even the little progress I make.

I'm tired of my life as it exists.

The incident that spawned this article happened 15 months ago. Unfortunately, I was limited to 500 words for the piece. I had plenty more to report; plenty more to say. In the end, even after my very-good insurance kicked in, I was put through test after test after test, seen by doctor after doctor after doctor, again and again and again, and in the end, told that my issue was "sub-clinical" and that they could not come up with a diagnosis. The fainting spells continued.

I fainted at Slimmons last fall - I can't remember the date but it was the night that Ricki Lake was featured in a piece by - I think - Inside Edition. I knew that I was going to go down before I fell the first time... managed to get myself into the dressing room before hitting the floor. I'm not sure how long I was there, but the first thing I remember was Michelle M with me trying to wake me up. I spent the class hiding in that room for fear of disrupting the filming.

After class was over, I shakily made my way to the front lobby. Sat down on one of the chairs, but was curtly told that the club was closing and I needed to leave. So I got up and started across the street towards my car. Think I remember somebody asking me if I was all right and being unable to respond. And the next thing I remember was being prone on the ground in the middle of the street with a crowd of people around me including Richard Simmons. I'm unclear what transpired from there, but I knew right then and there that I had damanged my knee badly in the fall, that I was already mortified at the attention that I was receiving, and all I wanted to do is get out of there and home. I insisted that they not call the Paramedics, and drove myself home. Saw the Orthopedic Surgeon a couple of weeks later (wanted to give myself enough time to be sure that it wasn't just a bone bruise vs. something serious), and ended up with knee surgery on the left.

Sporatic fainting has happened since then, and this spring, I had a week when I fainted every single day. A visit to my Internist, a referral to my Cardiologist, and again was told that there was nothing to be seen. Frustrating!

And then a trip to my Gynocologist, who thinks that just maybe the issue has to do with Perimenopause. Prescribed an estrogen patch for me. And I haven't fainted since.

Now don't get me wrong. I'm not convinced that this is the answer. Yet. Sometimes I have the fainting spells daily and weekly for months at a time. And sometimes I go for several months without one before the cycle begins anew. But for the time being, I have a little hope. At least this doctor, Dr. Rothbart, had nothing contradictory to say about my other doctors. Just quietly went about his business and we'll see what we see.

And as far as the article appearing today in the newspaper? Makes me think of the old movie "Joe vs. The Volcano." I'm very ill again with autoimmune issues. Tom Hanks, in the movie that was awful by the most lenient of standards, made one quip that remains with me to this day. "Bad timing, babe."

Will my doctors even see the article? If they do, will they care? Will they be angry with me? Will they take it out on me? I suppose it remains to be seen.

All I know is that the truth is the truth is the truth. If any of them questions me about it and the veracity of the statements, I can tell them, to the line, who said what and when. I can tell them that the financial cost of the adventure - which I did not want to embark on in the first place - was obscene and I got nothing out of it. Not a diagnosis. Not a glimmer of hope that the issue would resolve itself. But a lot of nasty comments and insults directed at me.

I don't know why I submitted this piece to the Times for consideration. I don't know what the upshot of it is going to be. I received my first congratulatory call about it before 8 am this morning. I suppose that there is some small possibility that it might help somebody, somewhere. I hope so. Because all I've gotten out of the whole thing is a great big headache. And no, I'm not going to look for help with that. To what end would I start that process?

Healthier than the Average American?

About two months ago, I reported that I had decided to take part in HMR's regularly scheduled Health Questioneer and Risk Factor Survey. I had avoided doing them in the past as I know how hard I work at my lifestyle yet I am intrinsicly unhealthy. I was afraid of what the results were going to be.

Well, I got the results back this past Tuesday.

It was exactly what I expected. My lifestyle either meets or exceeds the Surgeon General's recommendations on almost every count. I only had four items that did not measure up, and of them, only one of them registered a significant deviation. My weight, of course. I'm approximately 10 percent over where he thinks I should be. I am working on it; I'm now down six of the ten pounds that I gained and feel confident that I will get back to my personal goal of 148 pounds again. And that's where I am going to leave it, because the Surgeon General does not account for the approximately 10 pounds of excess skin that I am carrying and cannot do anything about.

The trouble with the assessment was my health status. Where he would like to see me at a zero, I scored a 19. No kidding. For the past 24 hours, I have been unable to leave my condo, and barely gotten out of bed for what I believe is a massive Crohns flare. Except for repeated trips to the bathroom, that is, and I am not going to describe them here.

I also am still fainting for who-knows-what-reason-it-isn't-diagnosed, and ended up having surgery on my left knee because of damage done in one of the falls.

I was very upset by the result of the survey; more so than I expected. The Surgeon General thinks I should have a risk factor of 0; mine is 14. Had it not been for my autoimmune issues, I would have registered with a negative number on his scale.

Lucy asked many of us, including me, what we thought about our scores. I was honest. I work very hard and am upset by the number. "But Laura," she replied. "The Average American has a risk factor of 25. Your risk is way lower than that."

That really bothers me. I have been miserable with chronic illness and come close to dying multiples of times over the past two decades. And I am supposedly healthier than Joe Average American? For goodness sake, just how unhealthy is our country?

Potpourri of Topics

Last Saturday, I bit the bullet and decided to go to my Spinning Guild (Greater Los Angeles Spinning Guild - GLASG) instead of exercise class. This decision was made, based upon three facts:

1.) I missed them and had received a few e-mails from people who missed me.
2.) The lecture-of-the-day was Chris Acosta about Angora Bunnies. Perfect for the day before Easter.
3.) And I did not feel well enough to exercise.

I've addressed the topic of GLASG before in my Blog. The social structure there has changed and somehow I felt left behind. I wasn't sure if the issue was them or me, but I was fearful of confrontation. There were two current members of which I was especially concerned.

Although I was uncomfortable in my attendance yesterday, I'm glad that I went. One of the people of concern seemed genuinely happy to see me. I had been advised that her personal circumstances were coloring her reactions to everything and that I shouldn't take it personally. Whew!

The other? She was there and was as cold as ever; like a stone. I'm not sure what - exactly - that I did to offend her, but she has made a point of giving me a horrible stare and not speaking to me for well over a year now. Her feelings could not be at all misinterpreted... at the end of the meeting when yet another member and I were in the kitchen (I was just passing through to the bathroom although I stopped to chat), she looked at the other gal and asked her if she would like to take the leftover bagels home. When turned down, she gave me a stare full of hostility, then picked the bag up and threw them out.

And you know what? That moment was liberating. I'm glad that it happened. I can place her where she belongs in the order of things and move on. I think I may go back again for next month's meeting.

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My camera has finally been acknowledged as "received" by the Fuji repair center and they tell me that it will be fixed within 10 working days. I only hope that it is returned before all the blossoms on my lemon tree have bloomed and fallen off. I only wish you could smell the fragranece.

If each of the flowers turns into fruit, I am going to have a bumper crop next year. All from a tree that I purchased from OSH two-and-a-half years ago because I felt sorry for it. They weren't watering it and it had been reduced to a stalk with two withered leaves that were about to fall off.

Much like my rescue animals, it took a year before it acknowledged me with a single lemon of thanks. Then another year went by and the year's crop was three. And who knows what I will harvest next year?

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As I continue to decline healthwise, I am starting to wonder how bad it's going to be this time. It feels a little different than flares past, but there's no getting around the fatigue and lethargy. I hope I don't lose my readership entirely because of sporatic posting.

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I am continuing to struggle with slow weight gain. Richard, in his chat yesterday, talked about somebody at Slimmons (I honestly don't have a clue who) who he counseled a few weeks ago to make a list of all of her "hot" foods. She was to post the written list and avoid them.

I thought about it. Not a bad idea. And so I developed my own list of things to be avoided. Surprisingly, it is short and theme related. Dried fruit is an issue. Breads & crackers are an issue. And the Protein Bars from HMR and other sources. Other than that, I really don't have a problem. That's probably why the weight gain has been as slow as it has.

So I have printed out the list and attached it to the front of my refrigerator. Perhaps the constant reminder will help me not bring those items into my home. But it's already helped me in a small way. For the first time in weeks, I've started a food sheet.

Assessing My Health Risk

As if I wasn't already stressed enough, HMR has issued their Risk Factor Questionaires again. The last time they did so, I looked at the questions and decided that I did not have the mental fortitude to cope with them, so I decided not to participate. Some of that decision, though, was based on a misbelief that this statistical information was only for the benefit of HMR. When I later found out that they issued Health Inventory reports back to their clients, I was a little bit sorry that I didn't partake.

So this time I decided to fill out the survey.
I don't particularly expect to live a long life. I've been sick way to long to ascribe to undue optimism. And the first page, asking about family history and personal health issues seems to bear out that belief.
However, the second page, looking at lifestyle, wasn't nearly as bad although it could have been better too.

The third page had mostly to do with addictive and unhealthy behaviors other than food. I do not smoke and I am not a drinker. That pretty-much sizes up all the answers.
I had a little trouble filling out question # 18. I would actually characterize myself a little higher than "Most from Box A" but definitely not "Virtually all from Box A" because I do eat eggs and at times, cold cuts. But the rest of it was left behind with my old lifestyle. Other Lifestyle Health Factors were a mish-mash of good and bad answers.
And the General Health questions were the same.
The surprising results were when I got my bloodwork results back today. If you recall, I had them measure them specifically during my pre-op appointment so that they were fresh for this questioneer.

Cholesterol - My overall result was excellent although my "good" cholesterol, percentually speaking, was a little low. My other measurements were within normal bounds. I was having a bad day last Friday, though, and my BP actually measured a bit high for me.

All in all, it will be interesting to see how I am rated as a long-term health risk.