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My Journey

I have had quite a journey since 2006 to get here. In January 2006 I was diagnosed with LUPUS & RA just as I started my student teaching. I had spent a grueling 8 years trying to get a doctor to just sit still and LISTEN to me! When I finally got a diagnoses; I thought, ok, now I will get some help getting back to a normal life. Yeah, RIGHT! I just got sicker and sicker, I knew I was going to die and all I could do was sit back and watch!   February 2006 I made it to my 40th birthday! I still got up every day to go to school and the kids were great at making me feel I could get through each day. My father, who had been disabled by emphysema and I supported each other with daily contact and I came to depend on him more than I realised at the time. We spoke of death and said all the things that a father and daughter should say before one dies. He apologized daily for the way my childhood played out, but assured me that he loved me deeply and felt that we understood each other on a visceral level that he didn't feel with my siblings (although he loved them as well.)   March 2006 was the last month of student teaching. I was becoming excited about graduating and getting my own classroom. The class I had led solo for the past 4 weeks gave me a surprise party and we cried as we said our goodbyes.   April 2006 was a frenzy of corollating and paper writing. I had to summarize my classroom experience and complete my senior project, the pressure was on to be done by May. To add to the pressure my eldest daughter was in the home stretch to high school graduation and touring college campuses. In hind site I used my work to numb my pangs from my baby leaving home. "I can handle this," I said to myself, denying that it was having any affect on me.   May 2006, I made my deadline! Brittanie chose her college; FIT in Manhattan. The big city, "YIKES!!!" "She's street smart, it will be ok, I guess." Meanwhile, there's a prom to prepare for, graduation plans to solidify and final exams to pass. I really don't know when I had time to breath!   June 2006 and graduation was around the corner. My dad informed us he couldn't go to the ceremony. Brittanie was his first grand child, she visited him every week and listened to him talk about anything even if she had no idea what he was talking about. They had a special relationship. If he couldn't go to her graduation; he was not in a good place. But not enough time to dwell, besides he would be at the party....Why does my back hurt?   July 2006 was spent together as a family. Going to the beach, amusement parks, shopping trips (dorm room neccessities.) Cramming memories of that last family summer into 4 weeks. Meanwhile I have a graduation ceremony to plan for. Just one hitch; mine is over 800 miles away in Utah (I attended college online.)   August 2006 two weeks to FIT orientation and three weeks from my graduation. God, my back aches! Oh well, no time for that now. One last family trip to the water park, ouch, those were rough landings; did anybody else think that was kind of rough? Pack Brit up and drive 400 miles round trip to Manhattan. Lug everything to the 13th floor in 90 degree weather and don't embarrass her by crying when you leave. Crying all the way home is perfectly acceptable though. Newsflash, no one wants to go 800 miles to your graduation! Fine I'll drive myself, maybe. Whatever, I really didn't want to go anyway (lie.) Is that a fever? I think I need to lay down.   September 2006, another school year for my two younger daughters. Moms out there know that daily grind. Up at 6am get breakfast, let the dog out, feed the cats, get the kids up (against their wills) Let's all play keystone cops while we race against the clock to get to two separate schools on top. One cup of coffee with dad before heading home to do all the house work left from the night before. I can't believe it's time to pick the girls up already! I hardly got anything done! Is it hot in here? I'm so tired, oh well I can get some sleep on the weekend (dellusional!!!)   October 2006, OK, so maybe I need to see the doctor. What would that do? They never listen, they just hand you a perscription, pat you on the head, and push you out the door. No thank you, I've had enough of doctors to last me awhile. I'm just going to lay down and rest after I visit dad and before I get the girls. I am on fire! OK maybe I'll just go straight home and skip coffee today. Alright I think I can ask my mother in law to take the girls to school. AAAGGGHHH!!! I can't stand up! OK, OK, I'm going to the doctor already! What'd I tell you, wait for 1 hour to see him for 5 minutes, leave with a fist full of perscriptions, go home and rest (that's what I've been doing for three weeks now, but ok.)   November 1 2006, I told you as was sick! I'm on my back in a hospital bed in unending pain. I watch as the unending parade of specialists ask me the same questions (doesn't anybody write this stuff down?) Test after test, more blood drawn then I could possibly have. Doctors scratching their heads, "we don't know." Send her home on IV antibiotics, she'll get better or she won't. Seriously people, America's healthcare system at work!   December 2006, everything is a drug induced haze. Dad and I talk on the phone, there's a saddness in his voice, I hope I didn't make him worry him too much. I feel well enough to attend Christmas dinner and Dad and I spent a couple hours catching up.   January 2007, I made it to the new year! Dad keeps asking me to come over. He wants to show me his books and where all his important papers are. Something in his voice seems urgent, but I just don't feel well enough to get there. The medical bills are piling up and life is still as crazy as before. I just can't shake this pain.   February 2007 my birthday starts out like any other day, 41 yippy! Then the phone rings, it's mom, their taking Dad to the ER and she thinks I should be there. I know how this will end, we've discussed it, prepared for it, BUT I"M NOT READY!!!!! Tough shit sweetie you don't get to decide. At least he was lucid when I got there, we hugged and said our goodbyes (without really saying goodbye..) He was in a coma by the time they got him upstairs to ICU. Mom couldn't let go, it took us 4 days to convince her to take him off the respirator. And that was it, the most important person in my life was gone. Can't cry, be strong for mom, she's a mess. Now we have to close his estate take his clothes to Salvation Army and otherwise remove any evidence of his existence from the house.   March 2007 my baby, my 7 year old child, comes to me and says she doesn't feel well. She looks like she hasn't slept in days, she says she keeps getting up to drink, but is also thirsty. I hug her tight, I get a wiff of strong fruity smell from her breath... "Mark, get me Dad's glucose meter..." OVER 600!!! Call the pediatrician, rush to the ER!!! My baby has diabetes!!!!! Another two weeks in the hospital (I really hate this place!) My head is throbbing, the pain in my back is getting worse again.   April 2007 my husband drags me back to the doctor. All I do is cry, all the time, unendingly. I just want to die, just let me go to sleep and not wake up....can't do it, your children need you, especially now! I have a breakdown in the doctor's office, I just want to die! Back to the hospital we go! More tests, this time someone has the bright idea to do an MRI. What a surprise SHE IS SICK!! Osteomylitis in my L5/S1 vertebrae, this stuff kills people!!! I've been walking around for a YEAR on death's door! Only now I have no disc left, totally eaten up and not much of the bone is left either. I've lost 2" in one year! And, Oh yeah, you're totally disabled! Forget ever teaching honey, it ani't happenin'   June, July, August 2007 another drug induced haze of doctor's offices and tests. Now my legs don't work and I'm in a wheelchair. It can't get any worse.... On the same day I receive both my first SSDI check AND my NYS teaching certificate. Ironic:drool:   I spent the rest of 2007 in silent introspection. I re-evaluated my faith (or lack there of) my family relationships, my place in the world. Oprah introduced the world to Eckert Tolle and the light began to brighten. I decided I would live and I would live better than I had before. I ahve battled back and can now walk only aided by a cane. I began exercising and eating right and I lost 40lbs. No matter how much I pushed myself, I just couldn't lose anymore, so in September I applied to our local gastro-surgeon to get a lap band. I waited with anticipation for the phone to ring. Nothing, days, weeks went by, no word. I started doing research on the lapband, everything I read said it was contraindicated in people with auto-immune diseases, CRAP! So I guess this is as good as it gets.   January 2008 I have come to terms with the fact that I am on my own. Whether I am fat or thin is NOT the point! I need to be healthy, as healthy as I can be. So my diet officailly ended and my LIFE began.   And so it was. I wasn't losing, but I wasn't gaining either! I can walk father then I ever thought I would be able to again. I changed my relationship with food and I was content in my life. Then the phone rang....   July 7, 2008 I attended my first group meeting for preparation of having a lapband! I have been to 5 meetings so far and I see the nutritionist next week. This site was given to me today and here we are. Well if anybody decides to read this and made it this far, you know the circumstances that led to this point. I'm going to try and keep this blog up through my pre & post surgical experience and who knows, maybe beyond. Life hasn't gotten any less hectic, but I think I am better equipped to handle it now. Anyway, here's hoping!
jswjones67

jswjones67

1
 

The Problem with recovering Addicts

:rolleyes:Has anybody ever told you the worst kind of smoker is an "X" smoker? Not that I don't respect them for the intestinal fortitude required to set aside an addiction, but tune down the preaching for a sec and look at people as individuals!!!   Here's my problem; my support group counselor, i.e. the gate to my surgeon is a recovering alcoholic. Which doesn't say anything about her character; she is a wonderful individual who truly cares about her clients. However, she looks at us through the same lens; we are all food addicts, and if we are insistent that we are not, then we are deluding ourselves and probably wouldn't benefit from this operation. Well, I won't get into how I am sure I am not a food addict; as any defense would simply appear to be a mealy-mouthed attempt to convince myself and so defeat my point, but she doesn't listen to any rational debate about it. She shuts down by sitting back, crossing her arms, placing a smug, "I know better than you about what makes you tic," smirk on her face and shakes her head in the negative while you ply your case. I find this a big negative to my working through my issues about the surgery in general and it is becoming an obstacle. I mean, I can play the game and totally agree with her to achieve my approval for surgery, but do I really have to admit to an addiction I don't have? How is that productive? Shouldn't a counselor have a more rounded approach to treating everyone as individuals? Even if 99.9999% of people you deal with on a daily basis are emotional eating, bottomless pits of self loathing and bargin basement self esteem who don't have the ability to push away from the table before their guts fairly burst without ever hearing their brains say STOP.....You still need to treat each and every one as a unique set of life experiences and circumstances, right?   You would think so, but as a recovering addict herself, she knows all the arguments, she's used them on herself. She's heard every justification, every nugget of self delusion, she understands the psychology of total loss of control. What makes her good at her job also handicaps her. If you are here in this class than you are over weight; if you are over weight than you have no self control (where food is concerned); if you have no self control than you are an addict. This is a logical thought process. However, sometimes (and I am well aware of the microscopically small percentage of people we are talking about here) people end up needing surgical intervention for reasons other than a lack of self control. Health conditions that wreak havoc on metabolism, i.e. thyroid malfunction, auto immune disorders such as Lupus and chronic pain as in rheumatoid arthritis; work together to both hamper with calorie absorption and trap the body in a jail cell of stiffened, inflamed and painful joints. All this is most usually accompanied by severe depression which further zaps the ability to move about as one should. Given a period of 1-2 years spent living in this hell a person who is NOT addicted to food can gain a considerable amount of weight!   So, I don't know. Does it really hurt me in any way to just go with the flow? I guess it just pisses me off that I have spent 42 years on this planet exhibiting total self control. I don't smoke, I don't drink, I don't experiment with recreational drug use; heck I don't even take all the pain meds prescribed for my conditions because I don't want to be a pill popping addict! So it ruffles my feathers that this women insists she knows that I am addicted to food!   So you know one way I know I am NOT a food addict? Because when I get angry I don't down an entire bag of doritos with a big gulp from 7/11; no, I write a blog instead!:lol:
jswjones67

jswjones67

1
 

A Little Night Music

Well I'm sneaking an entry in here at 10:00pm; I'm so tired I can barely keep my eyes open. We went to a Chinese Buffet tonight. It wasn't as bad as I thought it would be. Our waitress, who usually waits on us, asked if I was feeling well. When I explained about my up coming surgery she smiled and joked, "I will lose one of my best customers!" When the bill came she had charged me a child's portion! What's more, I didn't feel deprived or hungry, I felt just right.   The Olympics are on so I'm cutting this entry short. Not much else to say anyway.:thumbup:
jswjones67

jswjones67

1
 

Did you see the news tonight?

I nearly fell out of my chair listening to this evening's CBS news! "You don't have to be thin to enjoy good health," Katie Couric spat out at lightening speed. If you blinked you missed it! A recent study of a group of overweight adults in America showed that a good percentage of them had low cholesterol and normal blood pressures. Notice when it's positive news we are merely overweight, NOT obese! The item rated 3 sentences and that was it! As I sat and thought over those three sentences a question suddenly came to my mind, "When did MAJORITY turn into, 'epidemic'?" Growing up I was constantly reminded; by other kids, by retailers in clothing, by coaches, etc. that as a large athelete I was in the minority. I had to work 10 times harder and out perform 100% of the time, kids as thin as rails, to be taken seriously on my varsity teams. I am reaping the reward for my efforts in my old age with arthritis and the need to have both my knees replaced! As I raised my girls in the late 80s and 90s I noticed an unspoken change in the rules. Large girls were all over the playing field! Personal insults regarding body habitus were now the exception rather than the rule from peers and coaches. This nation's girls were so close to achieving comfort within their own skins. Then came the internet and video games. Parents became frustrated and scared by the new dangers facing their kids and locked them away from the parks and ballfields. Our children became couch potatoes. Instead of being big and healthy and proud our girls turned into jaba the hut! Now instead of being the MAJORITY we are consigned to being the EPIDEMIC DEJUER!   Oh well, this too shall pass. The great consistency of history is that the pendulum inevitably swings the other way!
jswjones67

jswjones67

1
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