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Archive for the ‘WTF Disease’ Category

Support Hose

Just over a year ago, I wrote a post about the loneliness of WTF Disease. As best I could determine, no one else had it. A couple weeks ago, I think I may have found some others who do. Oh, I’d heard of them, read about them. But I’d never actually come face to face with them until last month. Maybe.

I have been told, and have chosen to believe (although I keep a tight grip on a smidge of skepticism), that my WTF Disease is actually chronic, long-term Lyme Disease. LD, if recognized and treated immediately subsequent to infection with the bacteria, is not usually a serious illness. If it goes undetected, untreated for months or (as in my case) years, it’s a whole ‘nother Oprah. It then becomes a complex, debilitating, treatment-resistant, potentially life-threatening mofo.

Over the past few months since my tentative (in my mind) diagnosis, I have googled support groups. Over and over, I read the limited information there — a contact name, a phone number, a meeting time and location. Over and over, trying to figure out when and whether I should give one a try.

Here, I have a confession to make. While I strongly believe in the theory behind support groups, I don’t have much confidence in their reality. Too many times, in my professional life, I’ve known clients who’ve gone to support groups, seeking — say it with me now — SUPPORT, only to find a group of people who could more accurately be called a “co-misery group.” Groups of people with the same diagnosis, condition, experience, what-have-you, who liked to tell their stories. Over and over. And sometimes liked to one-up each other with those stories. And the thing is, the way I knew that they weren’t really supportive, is that the people came to stay. They never left. The “belonging” attraction of the group became a way of life. The common ground on which the group was formed became an identity for the members. I am a ______.

Well, I hate the fact that I have WTF Disease. Or Lyme Disease. And while I continue to learn to accept and live with what I must, my main focus is to get well and leave this illness in the dust. I have no intention of becoming a lifetime member. So I went to the group meeting with a certain wariness. I drove around the church where the website said the group meets, a couple of times, trying to spot the “fellowship hall.” I didn’t see that, but I did see a group of 5 men in a hallway. I approached tentatively and one of them spoke first, “Lyme group?” Yea, I was in the right place. I’m glad he broke the ice and precluded the possibility of my asking, “Is this the WTF group?”

A few words come to mind in describing this group. The first is “welcoming.” They absolutely were that. And a few other words, “flexible, low-key, eclectic, helpful, intellectual.”

They were mostly male, and mostly my age, give or take a few years. But there was also the female college student, and her supportive boyfriend. There was the wife of the group’s founder, there with him. There was a mom who’s been very active in the group; her 20-year-old son contracted lyme when he was 11. On this particular night, her son, Dan, was there. I got the impression he doesn’t often make it. He was pale, thin, and appeared not to feel at all well.

At one point there was some discussion of settling on a name for a fund-raising offshoot of the group — treatment for chronic lyme disease is controversial and not normally covered by insurance, and the $$ add up crazy-fast. This was obviously something that had been discussed before, but donations were starting to come in, so they needed a name to file the proper paperwork. Several acronyms were floated, until Dan said, in a surprisingly assertive voice, “Please, no more. No more acronyms! Just give it a name, but stop trying to make an acronym!”

Mike, the group’s founder, gently responded to Dan, “You don’t like acronyms? OK, what name do you have in mind, Dan?”

And Dan says, politely as you please, “Oh, I’m just here to criticize. I don’t offer helpful suggestions.” Cracked me up. How refreshing! How many times have you been on some sort of “committee” where someone pretended to be helpful, but offered only criticism? And how often does such a person own up to it? Priceless! I like Dan.

So, there was some organizational stuff like that. There were introductions. I was asked to tell my story. I told the short version. The abridged version. And all around, when I mentioned painful bones, little motors buzzing in muscles, being too weak to drive, slurring my words, there was nodding. Finally, someone else. About 10 someone elses, there in one room.

They talked about doctors. I asked if anyone had heard of mine — truth be told, that was my main goal for the evening. And they had. I was told she’s competent. That she trained with the best in the area, and her treatment of me would most likely be the same way he’d treat me. I heard from someone whose daughter got well under her care. Worth the price of admission, right there.

They talked about antibiotics and supplements. Lots and lots of talk about that. Oral vs. IV. Someone said anything other than IV is a waste of time. I’m on oral. Someone else said that magnesium stearate is the very worst thing a lyme patient can ingest. That’s in a lot of my various supplements. They talked about alternative treatments, and their costs — hyperbaric oxygen therapy, some new LED (light) treatment. The people in that room had spent huge money, including college funds and retirement plans, trying to get well. Someone talked about some supplement combination that is best home-made, and at its very best, made into a suppository. Someone asked, “Do you have to make it or can you buy it?”

The guy to my right answered, “You can get it online, at ‘upyours.com.'” I was the only one who laughed out loud. I think some people wrote it down. When I go back, I think I know who I’m gonna sit beside.

There is more I’d like to tell you about the group, and about me, and about lyme disease. But dammit, one of the symptoms that is emerging strongly in recent weeks is what they call “brain fog.” My short-term memory is frighteningly diminished. As is my vocabulary, my ability to choose right words, spell them, put them together properly. This frustrates me tremendously. And keeps me from blogging much, for now. I have every expectation that this will pass.

I’ll come back and invite you to a cookie party soon.

God bless.

(Um, I don’t know why “support hose.” Hose is just the next word that came to mind when I wanted to write about support. But, if you have been supporting “hos,” or “hoes,” or whatever, keep up the good work.)

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Last year, I proclaimed it an official tradition, and much to my happy surprise, I have had email requests for it this year. So here are the turkeys again.

And just so’s you know, I’m OK. The treatment on which I’ve embarked is a curious thing. I had about three days in a row last week where I felt pretty darned good. That was following some really bad, feel-like-giving-up days, on one of which I fell on the concrete floor in my basement. As I tweeted to my twitter pals: I smashed my right knee and hip, then my left shoulder, because apparently, that’s just how I roll.

I’ve been trying to write a WTF update post, and I will, rather soon. It’s just that there’s so much that’s happened. And one of the features of WTF Disease is what those in the know call “brain fog.” It’s hard for me to string ideas together sometimes. It’s hard for me to find right words, and spell them, use them properly. I imagine it’s like being hit with a sudden, acute case of Attention Deficit Disorder plus an expressive language disorder. Quite out of my comfort zone. But then, so is the rest of WTF. I’ll say more about it soon. I’ll even show you my humongous bottle of drugs. It’s impressive, truly.

But without further ado, to-do, who-do, voodoo, I give you the turkeys:

turkey farm

Across the hall from my office is what I believed to be a daycare center. Turns out, it is some sort of work-release program for 3- and 4-year-olds, from which they operate a turkey farm. As you can imagine, it’s been a busy place this week. I’ve dealt with a turkey or two in my day, so I thought I’d take a moment to offer some last-minute turkey selection guidance, with a little help from my turkey-raising friends across the hall.

Do look for:

good bird

A plump, confident bird that will look you right in the eye. All parts should be . . . “in the ballpark,” so to speak.

AVOID:

visually challenged turkey

A bird that appears intoxicated, or just effin’ goofy. You don’t want that.

inverted bird

The upside-down turkey, with crossed legs and shifty eyes. May also exhibit a paranoid demeanor. This bird will NOT digest easily.

ingrown turkey

Watch for the inbred turkey. Its feathers and legs tend to grow inward. Also be leery of turkeys with excessive glue or other miscellaneous white liquids dripping from their beaks. You just don’t know where a turkey like this has been.

afflicted turkey

This is the “WTF” turkey. Any bird that elicits, as your first response, a startled “WTF?!” is to be avoided. Just say no.

**********
If you’re here reading this, you’re probably old (as opposed to a first-timer). I remain thankful for your online friendship, and your continuing to stop by when not much of anything new is going on here. I wish you a lovely thanksgiving, and hope your brain grows weary of thinking of all the many blessings you have, for which to give thanks.
xoxox

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Taking a break from the political posts I’ve been trying to write — I know that is a disappointment to you, since there aren’t nearly enough bloggers writing about politics these days — to ask a favor.

Just this morning I stumbled onto the information that this week, all members of Congress have been invited to a briefing on the current state of Lyme Disease diagnosis and treatment. And a sorry state it is, my friends. Will you please join me in asking your representatives — and Obama and McCain — to attend this briefing or send a high-level staff member? You know how sick I’ve been, and there are thousands (at least) more like me. We need someone to pay attention.

If you go here, you’ll find more information about the briefing and a direct link from which you can email your Congresspeople. Hurry up, now, because it’s on September 24th.

Thank you so very much.

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First, something fun. It’s absolutely the most fun you I can possibly have right now.

myYearbookPhoto2

Biscuit's granny

Some flickr friends and I have been enjoying this site for a while now. Hours of playtime.

Also, I’ve been meaning to talk to you about something. Quite a while ago, in discussing WTF with my therapist, I said something like, “I still don’t know what God wants me to learn from this. I know what’s important, I know I’m not in control, I know to count my blessings and be thankful . . . I don’t know what I’m supposed to be learning.”

And she said something like, “What makes you think it’s you who’s supposed to be learning? It may be that the lesson is for someone else in your life, or someone who’s seeing you as you go through this, and how you deal with it. The lesson isn’t always for us when we’re going through something.” Hmmm.

So, just on the off chance that one of you who read here is supposed to be learning something from WTF, would it be too much for me to ask that you PAY ATTENTION!!! Let’s hurry this along, SHALL WE???!!!

There. That’s all I wanted to say. Now go yearbook yourself!

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At long last. Rather than trying to write you a post, I have copied a letter that I’m sending out to interested IRL friends. As you’ll see, I have no idea whether this is legit, nor where it will lead, but here we go:

Dear Friends,

I’m sending this out to all those who’ve been aware of my health struggles over the past couple of years. It appears there may be a diagnosis, and the beginning of a long road of treatment. It is all tentative, and controversial. I am normally a very private person, but I wanted to share this information because it may be of help to someone else. As I have learned, much to my sad surprise, there are many, many people who are suffering with strange symptoms that go undiagnosed and untreated. I feel certain that someone reading this will know of someone who may benefit from what I’ve learned.

Let me also say that I am not sending this out as some medical activist or advocate. I have no way of knowing, at this point, whether the information I will share at the end of this letter is accurate, or whether it is a product of medical charlatans. I simply don’t know. This is just my story. If it can be of some help to someone else, that is a very good thing.

A brief recap of my symptoms over the past 2+ years: first, beginning in
October, 2005, kidney stones. I cannot say whether they were related to my current illness, but I do know that since the treatment for them, in March of 2006, I have not been well.

Initially, I had a low-grade fever for over 6 months. Gastrointestinal
symptoms; rapid weight loss, accompanied by bloating; difficulty swallowing, then difficulty speaking. I felt that I was choking all the time, a feeling that I still have. I was lethargic for weeks, and could not wake up after sleeping. I felt as though I were heavily drugged, although I was taking no medications at all.

Next came neuromuscular symptoms. In the summer of 2006, I began noticing that my hands would “freeze” into claws if they’d been in a certain position for even a few seconds — grasping the steering wheel, carrying a purse (this is one symptom that has entirely resolved; it happens very rarely if ever, now).

Then, while taking Lily and a friend out to lunch after vacation bible school, I became stuck on the sidewalk. Couldn’t move my legs. When I was able to move, after several seconds, I couldn’t raise my arms to open the door. Terrifying. Following this episode, I’ve had muscle weakness in arms, legs, throat, tongue and neck, that continues through today. The weakness ranges from a tired feeling, to the inability to carry a dinner plate to set the table, to having to put the car in “park” at a redlight because my leg is too weak to keep the brake pressed down for the duration of the light.

I went through several months of stumbling and fell down a number of times. Thankfully, although some level of weakness is present daily, I haven’t had a bad fall for nearly a year, now.

Throughout the late summer, early autumn of 2006, my hair began falling out. On my pillow, in the shower, left on any upholstered chair I’d sit in, all over my clothing. My hairdresser of 20 years, who knew I hadn’t been well, told me later that she assumed from my appearance that I’d been undergoing chemotherapy, due to the thinning of my hair, followed by the fuzzy new growth.

Also during this time, my ribs became terribly painful. So much so that I couldn’t sit in a hard chair, or a church pew. I’d wake up with a yelp at night, from having rolled over and been hurt by the pressure of the mattress or my own arm. This symptom comes and goes, to this day.

In January of 2007, the twitching began. This, too, persists through today. Sometimes it’s minor, like most people experience from time to time — an eye twitch, a thumb twitch. More often, though, it’s almost violent — I can watch muscles — biceps, forearms, thighs — jumping for minutes at a time; it’s sometimes painful and always tiring.

Just after the twitching came the pain. It started in my arms. I don’t even know if it’s considered muscle pain, nerve pain, or what — it feels like my bones hurt. I can’t count the times that John and Lily have microwaved a heating pad for me to wrap around my arms while I sit and cry. The pain was confined to my arms for a long time, but now I think of it as my entire skeleton hurting. Mornings and late at night, my spine and hips are very painful. I have never been much of a sleeper, but now I am awake sometimes for three and four days at a stretch, not always from pain, sometimes just from unexplained insomnia.

I’ve had periods of confusion, the inability to recognize my own street, loss of vocabulary. Just after Easter of this year, I developed tinnitus. Sometimes the ringing in my ears is simply background noise that I have gotten somewhat used to; and sometimes it is so loud I cannot hear the television or participate in a conversation.

At last count, I had seen over 20 doctors. I lost count of the tests and various procedures I’ve had. The only things that showed up irregular in all the testing were a couple of nutritional deficits, and nothing that would account for these symptoms. There were speculations of MS, ALS, many neurological disorders, viruses, autoimmune disorders — nothing seemed to fit entirely.

I was tested at least three times for Lyme Disease. Tests were always negative. I have no knowledge of having been bitten by a tick, never had a bullseye rash, none of those things that one associates with Lyme Disease. Over the past two years, I’ve been offered enough drugs to open a pharmacy, by people who (like most doctors, it seems) were willing to medicate my various symptoms with no understanding of their source. I’ve been offered botox injections in my throat, and a procedure to stretch my esophagus, in an effort to ease the choking — again, with no diagnosis. I declined all of these treatments, because I remained convinced that someone, somewhere, would know what was wrong with me, and I feared that medicating specific, isolated symptoms would make diagnosis even more difficult. I did receive acupuncture treatments for about 8 months. They did no harm, and sometimes offered temporary relief of stress, if nothing else. But I was not getting better.

Finally, several months ago, I gave up. I was tired of telling my story to new doctors. I knew that literally hundreds of people were praying for me, and that would have to be enough. I figured I’d either just get better, or I’d get much worse so that someone would finally recognize what I had, or I’d stay the same and learn to live with it one day at a time, as I have been doing.

Then, in the spring of this year, I started getting emailed newspaper articles from people who knew of my story. One person was even kind enough to scan entire chapters of the novelist Amy Tan’s book, in which she recounted her 7-year struggle with an illness that sounded very much like mine. Someone John knows sent him a link to information about a film that I will give you here. All of these articles, books and film are about Lyme Disease. The illness that some docs had suspected, but for which I’d consistently tested negative. I learned from the new information being sent to me that there is a small, but growing medical community (called “lyme-literate” docs) who believe that the standardly administered tests are unreliable, and that the diagnostic guidelines established by the Infectious Diseases Society of America (IDSA) are inaccurate and inadequate. They also believe that many, if not most people who have Lyme Disease never experience the bullseye rash, and have no knowledge of having been bitten by a tick.

All of this time, I had dismissed the possibility of Lyme Disease, because of the negative tests. No one told me they weren’t reliable. With this new information, I found a local doctor who is lyme-literate, and went to her. Because she practices outside the scope of accepted standards, she does not accept insurance (or perhaps more accurately, they do not accept her). And she sent my blood to a lab in California that is not covered by my insurance.

Yesterday I went to her for results. Most tests came back negative. One, for the presence of protein that would indicate Lyme infection, came back positive — by the standards of the International Lyme and Associated Diseases Society — the folks who call themselves “lyme-literate.” By the standards of the IDSA and the CDC, my results are negative, falling short of their diagnostic criteria. The doctor said she is absolutely certain that I have Lyme Disease.

I do not know. But I have decided, with some apprehension, to begin the course of treatment that she recommends. For now, it is massive doses of various antibiotics, plus supplements to help counteract the negative effects of the antibiotics. For now, the treatment is oral, although she has advised me that daily IV antibiotics are not uncommon during the course of this type of treatment regimen. More antibiotics will be added over the course of several months or (God forbid) years. She says to expect at least 8 months of treatment. No traditional practitioner would approve 8 months of heavy-duty antibiotics, for a diagnosis that can’t even be confirmed, as far as the mainstream medical community is concerned. It’s very confusing and confounding to me. I am not one to take unnecessary medications, or any kind of medications, if I can avoid it. But I’ve lost a lot of time, and a lot of my life. I’ve missed activities with Lily, time with John, vacations, important family events, good times with people I love. I’ve had to close a private practice it took me years to build. I feel it’s time to take this risk.

I won’t go into all the reasons that it’s a bad idea to take antibiotics you don’t really need. The short version is, I’m likely to become more ill, in some respects (last night, the nausea was horrendous from my first dose), and the risk of becoming immune to a number of very valuable antibiotics that I may need in the future — particularly if it turns out that I actually do have one of the neuromuscular diseases that has been speculated. I have always been prone to pneumonia, and there are hundreds of documented cases of people who were treated by lyme-literate docs, who did not recover from their illness, and later died from pneumonia because the antibiotics that should have cured them had been overused. All that to say, this is not an easy decision, nor one that I make lightly.

If you have been praying for me, I thank you from the bottom of my heart, and ask that you will continue just a bit longer. Pray that John and I make wise decisions and get good counsel, and that I get my health back. As most of you know, this time has been very tough on John and Lily. In many important ways, they’ve been living with an entirely different person than the one they knew up until two years ago.

If I haven’t already overloaded you with information, here is a link to a YouTube clip about a film recently produced by Lyme Disease activists. I saw myself in many of the stories in that film:

Lyme Disease movie YouTube clip

And here is a link to the website of the film, where there are links to much more information:

Under Our Skin

Oh, one more curious bit of information. As many of you know, I searched for a year or more to find some link between my progressing illness and the lithotripsy treatment for kidney stones. I could not escape the belief that I was fine (except for the stones) before that, and sick as hell after that. My doctor says that in her experience it is very typical to see someone who has carried Lyme Disease for years, but only manifested symptoms after the body experienced some sort of traumatic event. She said it is often a minor car accident — she cited someone who was rear-ended in an accident that caused $300 worth of damage, as an example of how minor it could be. She believes that the lithotripsy may well have been that kind of trauma for me, that weakened my immune system and triggered the dormant Lyme Disease to overtake it. Is this medically, scientifically sound? I have no idea. I do know that before the lithotripsy, I was well, and since then, I have not been.

If you know and love someone who has persistent, unexplained symptoms — and they could be in absolutely ANY system — digestive, neurological, endocrine, rheumatological, ANYTHING — it may be worth getting tested for Lyme Disease. Short of going to a lyme-literate doctor, people should ask their family docs for the Western Blot test — it is covered by insurance, done by standard labs, and (I’m told) more accurate than the tests that are usually ordered to rule out Lyme Disease.

Thank you for “listening” here and for your prayers. You’ll never know how much they’re appreciated. I absolutely do believe they are working — not on my timetable, or in my ways, but then . . . Isaiah 55:8-9.

Love,
Susan (Susie, Sue, depending upon who I am to you!)

P.S. This just in! The IDSA is apparently willing to take another look. Those of you who are docs or know someone who is and might be interested in this topic, please pass this on:

a call for doctors to be on a Lyme Disease guideline review board

So there you have it. When I write my book about WTF Disease, I will dedicate it to you, Ratsasstafarians. I wish I could remember all those of you who’ve suggested Lyme Disease. And when you did, especially early on, I thanked you and told you I’d been tested and that wasn’t it. I know there was John, and Karen and I certainly know Amy, whose sending me that Amy Tan excerpt (in which I felt I was reading about myself) gave me the energy to try one more damn thing.

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First, you had to be there. Well, at least you had to read HERE.

OK. Yesterday LG brought me the mail, in which appeared a free magazine to which I have subscribed since being afflicted with WTF Disease. And right there on the cover of the magazine was . . . well, if you read that previous post, you know who it was. And you know what I said when I saw him.

S MF M

Last night, when I showed Jif, his response, upon seeing the mag from a distance was, “Aw, see, don’t you feel bad now, the guy has Tourette’s.”

“He DOES NOT! The article’s not about his illness, it’s about his mom’s MS. Geez!”

This morning I read the article. Well-written, compassionate, inspiring.

In it, he says, “She taught me to always follow my motherfucking dreams. She’s my motherfucking hero.”

And in describing a favorable response to one of her treatments, she says, “To be able to walk again is a motherfucking miracle.”

The apple doesn’t fall far.

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summer so far

Just wanted to check in before I go on vacation. Yes, it looks like vacation is really going to happen. Yay! This trip is what Jif wanted for his 50th birthday, and I have feared I wouldn’t be able to participate, but I will. Summer has been pretty good so far. LG has been in day camps, most recently a debate camp. We went yesterday to see what she’d learned, and it was so exciting. She has a natural talent, we believe. She’s not so sure she’ll pursue it further. It’s tough, as a parent, knowing where that line is between nudging a child to develop natural gifts and stepping back. Watching kids debate was highly entertaining. One boy, who had “R” trouble (kids with R twouble melt my heawt) was so cute. He kept saying, “I win this debate, because my awguments aw the most pewsuasive and impowtant!” LG seemed very scholarly, arguing against offshore oil-drilling, right up until the time she countered an opponent with, “Birds don’t fly well when their wings are covered with oil!” Perhaps not intellectual, but by gosh, I defy you to prove she’s wrong about that! Jif and I just looked at each other and nodded, eyebrows raised, as if to say, “Can’t argue with that.”

I continue to struggle with WTF. I did see a new doc, and had some new tests. It’s all sort of on the fringe of traditional medicine, and it’s a little frightening, frankly. I’ll write more about it in a couple of weeks. For now, I’ll just say it is a (thin) ray of hope about a possible diagnosis and treatment. Please continue to pray for my healing, and for clarity and wise decision-making regarding the treatments that are being offered. My next appointment is in late August. I do thank you all for your expressions of concern, your leads to more info, and your prayers.

I’ll tell you about vacation when I get back. Hopefully with lots of photos. We all SO need a break from the day-to-day. Thankful we can take it. In fact, it’s all about being thankful. This morning I had trouble getting down the stairs, and it is very easy, especially early in the morning when WTF is raging, to start thinking about being a sick person. But I said, no, I choose not to think about being a sick person. I choose to call myself a blessed person, a person who can go on a wonderful vacation with people she loves. This is my constant discipline and occupation, friends, this pushing aside the ill thoughts and magnifying the blessed thoughts. You’d think I’d be good at it by now, but I’m not yet. It seems I am being given plenty of time to master that; like kids with disabilities get extra time on tests. I’m special that way 😉

Big hugs to you if you’re still coming around.

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