Battling Bloat

Image from http://www.formerfatguy.com/



Despite my years with Lyme, I don’t usually blog about health; but this is really important. It's about boomer bellies; yours may not be some vague middle-age thing. Mine wasn't.

In January I was doing everything the medical community advises to lose weight and feel better. I was seriously worried about my belly and bowels. My tummy felt like it was second trimester or stuffed with sandbags; my bowels would not work without laxatives or mass quantities of prune juice. When the laxatives or juice finally took effect, it was like giving birth to rocks.

This problem has been going on for almost as long as I can remember. Back when I was on staff at ad agencies in Detroit, I had to set aside one full weekend morning each week to activate and complete a bodily function most take for granted.

I can’t believe I’m talking about this stuff in public. Well, you’re not reading it unless you searched for it, in which case my story may be helpful.

I walk, kayak and do yoga. I’m vegetarian, but I do eat eggs and dairy. I was eating fruits, vegetables and whole grains. Breakfast was usually steel cut oats – lunch might be a salad or a whey protein shake with fresh fruit. I had learned to make an amazing pasta fagioli with oil, garlic, onion, tomato sauce, pecorino romano cheese, white beans and whole grain pasta. It was so delicious it had become a mainstay.

So why did I feel like shit? Why did I never feel satisfied? I don’t have health insurance, I can’t just go to the doctor and find out; I can only take care of myself, pay attention and do some research when there’s a problem.

One week I had been especially mindful about what I ate. I know the principles of Atkins, so I’ve always been wary of carbs. But one night I was STARVED so I pulled out two pieces of high fiber whole grain wheat bread, organic peanut butter – crunchy of course, creamy is for wussies - and high quality raspberry jelly. Within an hour I felt like I was going to explode; then it occurred to me. I’ve heard of this before.

I have a friend who is gluten intolerant. I sent her an email – what does it feel like when you eat wheat? She said “bloated and sluggish beyond belief.” So I researched more. If you’re gluten intolerant, you WILL bloat and you may be horribly constipated or diarrheic. (I made that word up – I think.)

If you are gluten intolerant your body isn’t absorbing the nutrition from the food; no wonder I would eat and not feel satisfied. I was eating high quality healthy foods – but they weren't good for me.

After a week at my mothers, with her pancakes, cookies and pies, my bloat was at tilt and I felt like death on a soda cracker.

I read that some people who have this disorder can develop serious problems with their small intestines. My Gram and her annoying adventist sister nearly died from intestinal problems.

I called my mom to talk about it and she vaguely implied I was as much a food zealot as my Gram; who – by the way – lived to 96.

So if I hit a wall with mom, that’s ok. Some of my best friends are nurses. I talked to one on the phone and she said absolutely, it sounded like I needed to be off gluten. And she said it reminded her that she probably should too.

One of my long and lean yoga buddies is also a nurse. We have Starbucks after class and she always gets some weird soy thing because she’s lactose intolerant. While we talked she leaned back and said “Look at my belly. I shouldn’t even be having soy but I can’t give up everything.”

Another yoga buddy suggested I looked at the blood type diet. I hadn’t really thought much about that. When I looked up my blood type – rH negative – I found my type doesn’t do well on any grains at all.

(This blood type thing is fascinating, well worth checking into.)

Eat Right 4 Your Type: The Individualized Diet Solution to Staying Healthy, Living Longer & Achieving Your Ideal Weight

That was a month ago. That peanut butter and jelly sandwich was my last gluten. I feel SO MUCH BETTER NOW. I’m satisfied after meals and my bowels are starting to work on their own.

Gluten is in grains and flours – white, whole wheat and rye.I don't feel like I had to give up that much. I gave up steel cut oats, whey protein, bread and pasta. I read labels on everything now – something I’ll have to continue doing until I’ve got the thing down.  I discovered gluten-free products in the health food aisle; the ginger snaps and animal cookies are excellent. I don’t feel like I’m missing a thing.

Food tastes better – I think because I know it’s serving as nutrition now. When I want carbs, I eat potatoes or brown rice. My yoga buddy nurse friend was worried about my protein intake so I've added humane organic chicken to my diet. DO NOT poison yourself with factory farmed meat and poultry. (Please research that.)

The foods I’m eating now are not the enemy.

Beer? Hello my gluten-rich frienemy. I had already learned I couldn’t drink it without getting a headache within an hour; now I know why. If I want a drink I have wine or something with rum.

So if you’re chronically bloated and constipated or diarrheic – it may be that “healthy” gluten rich food and drink you’ve been consuming.

This book looks excellent:

The Gluten Connection: How Gluten Sensitivity May Be Sabotaging Your Health--And What You Can Do to Take Control Now

Pay attention to how you feel after eating certain types of foods. I think it’s a good habit to get into.

Namaste my belly boomer friends.

Is Looking Cheating? The Singles Sites

I joined Match about 4 years ago. That was sort of inappropriate because I was in my seventh year of a relationship. 

I had been sick for a long time and He had taken care of me through crushing illness and brain fog. He moved me in and fed me. He rented movies and made me laugh.

Sure there were moments when he lost it. One time he said "I wish you would just die."  There is a lot I don't remember from that time period, but you don't forget words like those.

When I finally remembered pulling a "bug" out of my leg before my illness, we had my diagnosis; Lyme Disease. He took me to the hospital for installation of the "stent?" that would (hopefully) blast the hell out of the Lyme bastards.

I started to recover somewhat after IV treatments. Somewhat. Mostly, they blew the cobwebs out of my brain. I felt like Rip Van Winkle.  I woke to find a few years had passed and my body was a mess. I was incredibly soft and weak.

I woke to find my beautiful, smart, funny boyfriend had turned into a monster.

Abusers are interesting people; they can make you feel like you're going crazy. They wear you down and tear you up from the inside. They'll criticize your appearance and follow up by preparing calorie packed meals "for you" as an apology. They'll make sure the refrigerator is stocked with your favorite desserts. They'll criticize other things about you in order to send you to food for solace.

They set you up to fail. They gain weight too, but it doesn't matter because he or she is in charge.

I remember the week I joined match. It started with a Sunday in Cape Coral, Florida. Sunday was boating day with friends. Boating was all about drinking, which flipped his personality and always resulted in emotional violence; yeah, and fear. I feared for my life.

Sober he was a master boatsman ... drunk, he was oblivious. Deliberate even. I remember one time he seriously injured a passenger by hitting a wake HARD at the wrong angle. His reaction was frightening; there was no remorse - just dark satisfaction.

I was having recurring "drowning" dreams and I didn't need Freud to know they were inspired by a physically and emotionally dangerous relationship.

He was packing the cooler to go - a ritual. He really wanted me to go that day for some reason. I was embarrassed by how fat I was. It was hard to tell him the truth - I didn't want to go until I lost some weight. He patted his Buddha belly and said "I'm no skinny minnie either, don't worry about it."  So I threw on a black swimsuit with shorts for a cover-up and went along.

We were with a friend I liked and respected - and his date, who I really didn't know. I remember that she was very smart. I cared about what she thought of me.

Boating ensued. Beer ensued. Down the Calloosahatchee River, through the miserable mile and left through the Sanibel Causeway. We got to Fort Myers beach and anchored in the smooth white sand near Lani Kai.

By the time we got to shore, we'd both had too much to drink. I called him on his constant rage and he called me a cow.

I walked away. I waded back out to the boat and waited for everyone else. I was stone silent on the trip back and then again, at the house. The friend was no stranger to my ex's abusive ways, he had seen it all before. He put a hand on my shoulder to comfort me as they left.

I flipped my laptop open and caught my reflection in the monitor. I had been crying. Who was this tragic old woman? I thought "this man is killing me."

I was 56 years old. Fat, sick and weak. Dependent on a man who victimized me. A total loser.

The match ads were everywhere. I went in to see the faces and read the stories. There was comfort in it. There were other single people out there - my age. Skinny, fit and fat. You could tell from the descriptions they'd been through hard times like mine.

What is that line in Broadcast News? Something like "Wouldn't the world be a wonderful place if insecurity and self doubt made us more attractive?" It didn't add to their appeal, but it made me realize I wasn't alone.

I joined with what little money I had. I posted a photo that looks much older than I look now. It's amazing what being true to yourself can do.

Some men expressed interest and I had my first taste of having something left to offer. I got my hope back. It helped give me the balls to leave. Not right away, but eventually. I could most certainly do better than him.
In fact, alone but free to find the right person was absolutely the way to go. I'm still looking and I've been hurt along the way, but I don't regret leaving for a second.

When is it ok to look? Probably whenever you're sad. Married, separated, divorcing or single. I don't believe in acting on it. I believe in ending whatever you have and mourning that loss so you don't carry the baggage with you to the next relationship.

If you're in an abusive relationship, please consider buying "The Emotionally Abusive Relationship". It helped me sort it all out.

Most important are her worksheets. One has you make a list of the strengths and weaknesses of the parent who had the most influence in your life. Then you compare those strengths and weaknesses to your abusive partner.

And have your epiphany. That's where I found mine.

***

I am currently on two singles sites. 

Plentyoffish.com is free - but you get what you pay for. I don't take anyone I meet there seriously. In fact, my last contact - who seemed bright and honorable - turned into a cyberstalker.

Match seems to hold the most potential. I met someone I really like this week, someone who seems to believe as I do. Maybe I have a friend I can relate to. Maybe more. Maybe he will be nothing but a blip on my radar - someone to fill my fantasies for a short time.

No harm done. Fantasy is good ... sort of a subset of HOPE.

I don't think any of us want to be alone.

Be honest in filling out their forms so you'll have a real chance at a decent match. I live among the conservative right but I describe myself as I am - liberal. It limits my prospects, but it also spares me potential grief down the line.

When browsing these sites, be mega-aware of old photos and remember that descriptions usually represent people as they THINK they are. Self awareness seems to be a rare quality; honesty even more so.

Don't give your heart (or anything else) too quickly.

NOTE: I've tried eHarmony; it's the high fructose corn syrup of social connections - sicky sweet, so automated you'll be linked to anyone with a pulse; and even if there is someone interesting, their processes prevent meaningful communication. I think it's a waste of time and money.

Whatever you do - if you're sad and lonely with or without a relationship, don't just sit there.

Do something about it.

Blue Cross Blue Shield; they finally called.

I applied for BCBS Catastrophic. They told me they'd call back in a few weeks. It was a few months.

Understand that in the past five years or so I (inhaling deeply to get it all out in on sentence) got super sick, saw doctors, spent two years undergoing tests and treatments for whatever they thought I might have - backtracked to the tick, got IV antibiotics for Lyme Disease, dumped all my prescription meds because they didn't seem like they were doing anything, started feeling a little better, moved where it was warm, made myself engage in regular physical activity, started doing yoga, started eating right and taking really good care of myself and got my FULL health back WITHOUT doctors.

So of course I do not deserve health insurance.

I was in the last mile of a four mile walk when I got the call. I was not huffing and puffing. My pulse rate was perfect.

The woman from BCBS proceeded to tell me why I cannot have health insurance.

Basically, because of test results from four years ago when I was very ill. She rattled it off ... mitral valve prolapse (mitral valve prolapse is uncomfortable but it's not life threatening), Epstein Barr Virus (which was no longer testing positive after two years), all the ailments that were part and parcel of Lyme Disease. In fact, "Lyme Disease" was the one term she DID NOT use in explaining why I had been denied.

She said my records show that I was on disability. I said I had applied for it while sick, but never got it. I did not say that two years of illness without disability insurance cost me everything I worked a lifetime to earn - my commercial property and my house.

What I did say was that I got well down here and was working full-time until March of this year. Somehow she assumed I must have lost my job here due to illness, and I said "no, because of the ECONOMY." I nearly SPELLED it for her so she would UNDERSTAND.

She sounded surprised.

She said well maybe if I go back to the doctor from four years ago and redo the special tests, maybe I could qualify. (Ask yourself - how much would THAT COST without health insurance?!) I said I DON'T LIVE IN MICHIGAN ANY MORE.

She sounded surprised.

Well how long have you lived there? THREE YEARS IN MAY.

She sounded confused. She sounded like she felt sorry for me. It has to suck to be the one making life-changing calls based on bullshit, erroneous files.

UNITED STATES HEALTH CARE AS IT STANDS IS A JOKE, A CLUSTER FUCK THAT IS ALLOWING PEOPLE TO DIE.

Angry? Oh FUCK yes.

Does this CHANGE anything? Yeah, one thing.

If I DO have a medical emergency of catastrophic proportions I will NOT hesitate to get my sorry ass to E.R. and let them pull out their extreme measures to save my life because there is NOTHING LEFT TO TAKE.

The lying, cheating, blood-sucking money monger health care and disability insurance industries can't ruin me any more than they already have.

Lyme Disease Update & Rant

This photo reminds me of Lyme Disease.

For some of us it's more than debilitating illness - it's crushing confusion too. I remember showering and forgetting what I'd washed. Many times I was too weak to dry my hair; I went back to bed in towels.

Finally I got so sick and confused I went days without showering at all. (My ex-bf is a saint for taking care of me through all this.)

Lately there is heightened awareness of Lyme Disease.

All I can say is ABOUT DAMNED TIME.

When I first got sick I went to Michigan's DNR site to see if it was possible I had Lyme. According to that site, there was no chance. It did not exist in that area.

If the site had been accurate, I would have pursued correct treatment years earlier. But no, it took strange circumstances after two years of personal hell.

After I was finally diagnosed, a friend who works for a pharmacist asked him about it. He said Lyme was "deliberately under-reported because the state doesn't want to damage the tourism industry."

The DNR has since changed the website. Too little, too late. The undiagnosed Lyme turned my life upside down and I lost EVERYTHING.

An online Chronic Fatigue support group saved my life by leading me to diagnosis. I'm surprised they still remember me ... today I got an email.

"Hey there,

I have been having a weird symptom for about a month now and the CFS group thought you might know. I have been having this weird tingling in my back frm my shoulder blades down to the lower part of my back. It is a feeling like when your arm is asleep and is beginning to wake up. It is a numbness and tingling kind of feeling.

It is not painful, just annoying at times..........................It goes on for hours, and I wondered if you had any of these symptoms with the Lyme,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,"

I'm putting my response here in case anyone reading knows someone who's living with Lyme or similar illnesses.

"Hi Susan

There was one day when I forced myself to drive somewhere and I started losing feeling in the fingers of both hands. The numbness started crawling slowly from my hands to my elbows ... it was surreal. I drove straight to ER and they wrote it off as stress. (I thought I was having a stroke.)

That same week my shrink said my face was crooked, like I had Bell's Palsy. Someone in the group - Matt I think - saved my life by saying YOU HAVE LYME DISEASE. FIGURE OUT HOW YOU GOT IT.*

I'm doing great down here, my health is fine. I can't handle cold weather AT ALL. If we have a cold night I nearly cripple up.

You can forward this to the group if you like. In fact I wish you would. If anyone wants to talk they're welcome to write.

Part of what got me well was using my anger constructively. I made some changes:

I threw out all my meds. (I was furious that nothing was working - and actually felt a little better within a few weeks. This is me, it's not for everyone, but my undies are still in a bunch about pill pushing doctors.) Now I take vitamins and ... it just occurred to me, I never even get headaches any more. Maybe that's because of everything else I'm doing.

I moved to cleaner air and warmer temperatures. Not everyone can do that but it's part of what saved my life.

I treat my body like a temple - healthy fruits and veggies from a local farmer's stand and ZERO fast food. My diet is mostly vegetarian with eggs and dairy. Sometimes I slip and have fish or poultry. (I can buy fresh fish and shrimp from a fisherman around the corner ... so I know there is zero processing.)

Yoga has made an enormous change. ENORMOUS. It has been about a year I think. One of my friends from class said "I remember those first few times you came; I didn't expect you to last one full class." I could hear my joints grind. But I stuck to it.

The most important thing is find the right teacher. Mine is very gentle, asks what your issues are and makes accommodation for weaknesses.

Now I'm a 58 year old physically functioning at 35 year old levels in class.

I enhance the yoga with walking or bike riding. (Get outside, get sunlight.)

This is almost the best health I've been in in my life. The most flexible, the most active.

If I knew back then what I know now, I would have done the IV antibiotics and taken greater care with everything that went into my mouth, from liquids to solids; garbage in, garbage out. Food can harm or heal. I remember the depressions, the "comfort food" - or sometimes eating nearly nothing and still gaining weight. When we're sick our metabolisms go to hell.

And I would sign up for a gentle yoga class with an understanding teacher. I have gone from someone whose joints creaked getting out of the chair - someone who was so weak I can remember my feet literally flopping over and dragging on the worst days - someone who fell down the stairs about three times - to someone who can just about wrap her ankle around her neck.

Imagine ... go to a studio and find the right teacher. I can't stress that enough. There is even chair yoga for those of us who got totally rusted out from illness.

MOVE. Even (especially) if you don't want to. Sit and die or move and live.

I practice Iyengar yoga. It uses props for people with weaknesses, injuries and other limitations.http://en.wikipedia.org/wiki/Iyengar_Yoga

Sorry, I know that's too much but I hope you'll send it to the group. I almost have survivor's guilt, I remember how much it sucked to live that way and I never want to be in that position again!!!"

Susan - I suspect a few of the yoga positions we do would relieve that back weirdness. One of the first things we do in class is lie down on the floor on our backs and pull our knees into our chests - then rock back and forth. It relaxes the spine. We also do back stretches over bolsters that are incredibly relaxing/healing.

We don't walk out of class ... we pretty much float.

(End of email.)

*
How I got Lyme? I was sitting in my ex-boyfriend's family room watching Sex and the City. He was on 5 acres with deer. My Bouvier ... who was lying at my feet ... liked to go out back and chase them.

Apparently the deer tick crawled off her, onto the recliner and into me. I felt my flesh move, clawed "the thing" out with my nails and it was full of my blood.

I had no idea it was a tick.

I got sick a few months later. During the two years of crushing illness, not knowing what I had - my mother started talking funeral arrangements.

Lyme Disease is that damned bad.

If you know anyone who has strange symptoms, please have them investigate Lyme Disease.

I've been blessed to be able to help bring a few others to diagnosis and treatment. In my case the IV antibiotics helped mentally, but I'd had it too long. It took a move to a warmer climate combined with the afore-mentioned lifestyle changes to turn my health around.

My long illness inspired my book:

Sick Mick's Guide to Selling Antiques & Collectibles

Staying busy mentally - or at least trying to - kept me from drowning in despair.
http://www.amazon.com/gp/product/0978739302/ref=s9_simz_gw_s8_p14_i1?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=center-2&pf_rd_r=1Z0P54T7QNPJB2KB8VQ8&pf_rd_t=101&pf_rd_p=470938631&pf_rd_i=507846

EMAIL FROM A FRIEND

Connie is a total doppelganger ... we met online about five years ago when we were both sick as death with undiagnosed illnesses.

When I got sick I was making $92,000/yr. with a victorian home on an international waterway and a victorian commercial property on that same waterway. I had an antique shop and a career and friends and a boyfriend and ...

Connie was an award-winning landscape designer with great digs and big contacts.

I ... well you kow what happened to me. Finally realized I had pulled a deer tick out of my leg before I got sick and got treatment for Lyme Disease. Still, the IV antibiotics only did so much. Anger got me through the rest of the way. Made me push when I was afraid I'd have a heart attack ... made me say "I will not live like this."

Now I'm fine. So long as I keep pushing.

Connie ... they never really diagnosed her. She has researched and self-treated herself, with Sinatra Protocol and others. She watches her diet like a hawk.

I notice incredible cosmic similarities in our current lives and possibly past lives - strange parallels and cycles. She moved to the family farm to help care for her dying mother. Who is, of course thriving under her care. She brought something that was basically just acreage and old barns back into working order, raising geese for market. (One of those gourmet markets is the White House; Obama is a relative on his mother's side.)

To me the most amazing part is that Connie's mother BEAT her as a child. Treated her like shit. Put her through hell. Like me, her Grandmother was her salvation.

Connie is the only one of her siblings who would actually step up and care for the woman. And while her mother has dementia, she has the super-rare type where she is actually SWEETER for it. She has been a comfort to my friend. She manages to say the things Connie needs to hear when Connie needs to hear them.

In the world of karma, Connie deserves all good things this universe can offer.

Connie and I see the big picture in this world and "that one", past and present, now and future. So when I get an email like this, she blows me away.

"I thought I should check in on you now and see how you are dealing with the job situation etc.. You were one of three people who called me to tell me they'd lost their jobs. My friend Hanne lost hers when the paint store she works at closed and Teme's in hot water as well, with only her son and DIL working now, and her son worked for Circuit City- which also closed. Leaving her live-in DIL the only breadwinner. Fucking crazy.

My brother spent time letting employees go last weekend. My "Kentucky date" Don said his company stopped matching retirement contributions and took everyone back to a 35 hour work week. This is just horrible news to keep hearing from the outside world.

So. just checking in I guess.

The only good news from all this is that I can probably get someone to live here and work in exchange for food and shelter... the same thing my grandparents did in the depression at their farm.

Im still coughing. I sure would like to feel good again. I'm still so out of it that today I forgot to let the chickens out OR water and feed them. What the hell... I remembered only at 10 pm when I went to lock them in and realized they already were, from last night. Poor things! So, I gave them food and water for tomorrow morning in the coop with them.

The farm tour went well from last weekend, I dont know if I told you about that. But it was a lot of fun for everyone. And I had a chance to see everything thru their eyes. Making it all new and interesting again- not all about what still needs to get done.

I'll talk later - gotta get some sleep. Just let me know you are alright.

Connie"

I'm alright. And hearing from Connie always keeps things in perspective.

Friday the Thirteenth & Lyme Disease

"You've become a luxury we can no longer afford." This from my boss on Friday the thirteenth.

I hate cliches.

I'm a person who cringes when gay friends lisp, when lesbians wear sensible shoes, when my dogs stop to pee at fire hydrants and when I go completely blonde; like today when I popped a piece of gum in my mouth with the wrapper still on.

Yes, laid off on Friday the Thirteenth. I think that was three years from the day my cousin Robin (a nurse) found her boyfriend Kenny dead in bed, resplendent in his tropical fish panties.

Kenny was a gorgeous guy, absolutely gorgeous, with prematurely white hair. Kenny Rogers wishes he looked as good as this guy. They'd been together five or six years.

They'd had their gazillionth fight. Her last words to him were "fuck you."

Then the traditional three days passed and it was about time for him to call and admit what a worthless piece of shit he was and lie that he would never do that (whatever heinous act it was) again so long as he lived.

He didn't call - but friends did, asking if she'd seen him. Nobody had. Not for three days.

Robin - like me and my granddaughter - is a sensitive. She knew something was wrong and took her mother with her. The morning Robin found him, he was on his side, in the fetal position. At first they thought Kenny was asleep, then she saw the pooled blood on the lower side of his body. There was a melted popcicle on the sheets and half a glass of red wine on the nightstand.

And she would find later, an appointment book filled with notations of various doctors around town who were prescribing the Vicodin that he mixed with the alcohol that killed him. Newly retired from Ford, staying high was Kenny's new Job One.

He had lied to her, cheated on her with total whores and utterly humiliated her around town. I'd read his tarot cards. I remember looking him in the eye with both of us knowing without a doubt that he was all about Kenny and nobody else; he just was who he was.

And you know what? Despite all that, I loved him too.

I spent about four days with Robin, up to the funeral. We talked a lot. We cried, we laughed. I told her "you didn't have the strength to dump him, so God offed him."

She nodded. She knew. I didn't say it to be mean. I said it because Robin is the finest, kindest person I know and she deserves better. (At the funeral, Kenny's parents gave her the respect she'd never received in all her time with their son. The respect of a true partner. )

Friday the Thirteenth. Note to self - find a way to avoid those.

It has been a rocky ride since my thirteenth. I have highs where I know I'll be fine and lows where I wonder if I'll have to hook up with some moonstruck old boobophile and look at ear hair every night for the rest of my (or his) life.

Someone asked how I was doing and I said "well, I'm not reduced to giving blow jobs in the parking lot yet." If I can't manage a simple stick of gum ....

Yes, I already have freelance work. Yes I have feelers out there, more every day; but I am having the worst time focusing on the work at hand.

One nice thing did happen today. There are no accidents in life. At least for those of us who are paying attention.

Some months back I met a guy online who had a friend who was sick. And somehow we got to talking about it and I said "sounds like she has Lyme Disease." It seemed like a stretch ... she was bad off, in a wheelchair. There were other symptoms, all horrendous, life altering and confusing. Like mine, only far worse.

And my mother had already decided where my remains would be interred.

The sick woman called me and we talked. It sounded like Lyme to me.

I got this email today. Things like this make my two years of undiagnosed hell almost seem like they were worth it. At least I got to spare someone else years of misery:

Hi. Carolynn B here. We corresponded a couple months ago about lyme? Well I have seen Dr. Markowitz, gone through two 24 hour urine collections for analysis, supplied 18 vials of bloodwork (I don't think I have any more to spare!) and perhaps it isn't surprising, but BINGO! They've determined a lyme situation here. So next Thursday I go up to St. Joe's Pontiac to have an I.V. needle inserted, get back to Keego Harbor to an associate of Dr. Markowitz to show me how to give myself the weekly treatments.

I just can't thank you enough for having directed me. I'm indebted to Dan for connecting me to you FOR that direction. I'm getting decidedly emotional about this because FINALLY there's hope for reversal. I mean I'm looking at regaining my mobility! So if one looks at this "cosmically'', I was meant to have to wait a certain length of time for certain individuals to come into my life, you being among them.

And I suppose there have been certain lessons for me to learn too, like patience, perserverence, keeping a cheeky attitude and not having too many pity parties, and also seeing first hand the plight of many disabled and senior citizens. If I could figure out how to become an advocate for that issue I would.

But I just wanted to contact you and let you know the update and how instrumental you were. Thank you so much. I am so jazzed about this. 4-5 weeks is nothing compared to the results. And funny thing is, is that between conventional and alternative approaches, a common link/conclusion was found. Something in the brain, unaddressed previous virus causing havoc with mobility. And this will ultimately be like a birthday present for my son, as he's always been such a help and "Next time I see you I want to see you walking....". I can imagine going to visit him in the air force and NOT using a wheelchair! I can see in my mind's eye climbing the Akropolis in Greece, without using a wheelchair and the cage built for disabled. It was my one focus to do that, so I suppose I'd better follow through!

Thanks, Mick! I hope I'll be able to pass on the 'baton' of hope and encouragement to someone else.

Sincerely,
Carolynn B

I will go to bed tonight feeling blessed to have had a role in Carolynn's recovery. There's nothing more important than a life that has meaning for others.

Self-Diagnosis and "Cyberchondria"

Cyberchondria; I didn't know there was such a word. The NYT has an article on it. (I'll include a link a little further down.)

When I got sick five years ago (is it that long ago? I'm losing track of the years) my cyberdiagnosis was either MS or Chronic Fatigue Syndrome.

My test results churned up a hint of Epstein Barr Virus - so my doctor said no, not CFS - EBV. But everything I read online said that EBV and CFS are way similar symptomatically. In fact, the online research said that when EBV does not go away it BECOMES CFS.

In hindsight, in my mind - CFS is the garbage can of all diagnoses; that's what doctors say when they DON'T KNOW.

My symptoms were life-altering. I joked that I had Roseanne Barr Virus and that's why I was swearing so much.

After being desperately ill for two years, my symptoms started morphing. My face got lopsided when I was especially ill, and my fingers were starting to go numb. My doctor went from using the term "chronic EBV" to "diagnosis unknown."

He had given up on me.

My online support board was my lifeline and home base in my search for answers. I told my friends about the new symptoms and two told me I definitely had Lyme Disease. Those people were experts. They were all smart and sick with nothing but time on their hands.

I was like "WTF is Lyme Disease?"

So I went back online to Michigan's Department of Natural Resources site to see what a deer tick looks like. Well, it looks exactly like the wriggling critter I clawed out of my leg three months before I got sick.

Mine was second from the left in the photo lineup. I remember screaming when I realized the thing "on" my leg was IN my leg. I clawed him out - he was so full of my blood he was the size of a pea and nearly IMPOSSIBLE to kill. I slammed a 4" phone book on him and jumped on it.

I was not walking in the woods. I was sitting in a LaZBoy watching Sex and the City at my ex BF's house. He has five acres with deer out back. My Bouvier must have brought the critter in on her fur. We're not talking wilderness, we're talking a suburban setting where you could walk to Barnes & Noble.

All a sick person really needs is the internet - and THEN a doctor to find solutions to your self-diagnosis. Because that's EXACTLY how my illness went down.

I printed out a photo of deer ticks, circled the culprit and handed it to my MD. He immediately put me on IV antibiotics. Just a few years too late, of course. But late is better than never.

The article in the NYT is pretty funny. It's like "get a headache - go online and decide you have a brain tumor."

But I have to tell you - in my experience, a smart person with time and internet can meet or exceed whatever a halfhearted MD's got in his magic bag. Sick people MUST get involved in what's wrong with them or they may never find real answers.

Anyway, enough ranting. Here's part of the article:

"Mr. Horvitz said that in addition to his interest in creating a Web search tool that would give more reliable answers, the research was driven by clear memories from his medical school education of what was often referred to as “second-year syndrome” or “medical schoolitis.”

He said he remembered “sitting on a cold seat with my legs dangling off the examination table,” convinced that he was suffering from a rare and incurable skin disease.

While the doctor was out of the room, Mr. Horvitz said, he took a look at his medical chart and saw that the doctor’s notes read, “Eric is in medical school, and he has been reading a lot.”

The researchers said that Web searchers’ propensity to jump to awful conclusions was basic human behavior that has been noted by research scientists for decades. "

Click to read the full article.

http://www.nytimes.com/2008/11/25/technology/internet/25symptoms.html?th&emc=th

Trapped in Paradise

The evening I took this photo on Fort Myers Beach the air temp, water temp and my body temp were about 98.6. It was SURREAL. I have never felt or seen anything like it.

Trapped in Paradise.

I know, that sounds like a strange concept.

Went to yoga yesterday at Health & Harmony on McGregor and my Canadian friend Connie - a nurse and former professor - joined me for the first time.

She has fibromyalgia, I have Lyme Disease ... Gretchen, another friend at yoga, has CFS.

Gretchen and I have had significant relief from Iyengar Yoga. (Iyengar still teaches in his 90s. In his youth he was so ill he nearly died. His type of yoga is especially gentle and employs props.)

http://www.bksiyengar.com/

For Michigan friends - Iyengar was introduced to this country by a woman in Ann Arbor. When I sent my son a CD, I told him the CD was going back where it all began.

Anyway ... it is my hope that Connie will find some relief from this program. She did sign on for a series.

During our session she could hardly kneel and I heard her joints crack. I was very worried - and surprised since she has been investing a lot of time in other exercises.

Afterwards we went to Sakura on McGregor for soup & Chinese.

Connie told me she went to Washington DC last week to put out feelers for a new job. She seemed optimistic, but I knew she's at least as sensitive to climate change as I am. I asked her if she could survive up north again and she broke down and cried. (Our poor waitress thought there was something wrong with her General Tso's.)

Truth is - it doesn't matter if she can find a job there, she can't handle it. She said she was so cold she had to stand in a hot shower until she was warm enough to move again.

What a nice concept, to imagine you could move anywhere for work. It's just an unrealistic dream for some of us.

The temperature dropped 25 degrees in the last 24 hours. I am too cheap to mess with the thermostat and I'm damned if I will live in Southwest Florida and EVER use the furnace.

This morning I woke at 9 feeling like a stone. A stone in pain.

It's Sunday, I told myself I could sleep another 20 minutes. I finally limped downstairs and looked at my watch, thinking it had broken. It said 2:15.

I had breakfast well past lunchtime, fed the dogs, took them outside and had to go back to bed. I am 100 years old. Everything hurts. Thankfully, it's Godfather Marathon day on AMC and I caught True Blood and Californication tonight.

At this exact moment I think I'll be OK to go to work tomorrow. Everything I watch on cable ... I think about how I can apply ideas to our advertising campaigns. So it's not like I'm a 9 to 5-er. It's like they rent the demented portion of my brain 24/7.

But it's embarrassing to be coping with this shit, it makes me seem my age at the office. I am the oldest one there - although I don't think I seem like it.

I have enough vacation time left that I could easily go back to Michigan and see family over the holidays - but it would hit me so hard physically, I fear for the repurcussions. Last time I went north - August - I survived the giant temperature changes up there, came home and was sick for two months.

It saps my energy, leaving me susceptible to bugs and viruses.

My granddaughters are growing up without me. I have friends I'll probably never see again.

If I ever have to go back there to live year-round, I imagine I would be like a cripple. Or - like Connie and I agreed - we would shave 15 years off our lives.

It just sort of amazes me that nobody ever talks about this, about people who have to move here because they cannot survive in the cold.

Or - on a more positive level - about the people up north who endure cold and darkness who could be living fuller, more active, FAR more productive lives down here.