lisa

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Never in a million years would I ever have thought I'd see the day I'd be praying to stop losing weight.  But here it is. 

I had my RNY over 12 years ago.  The rapid weight loss was amazing, I loved it.  I dumped A LOT!  In fact, I still do.  I avoid sugar and have gone completely Organic/Non-GMO.  So I feel better about what I'm not putting inside my body and my son has also embraced Organic/Non-GMO eating as much as possible.  Fortunately, he loves salads, and knows he needs to lose about 20lbs, but at 17 he's still growing and how he towers over me. He's over 6'.

I wrote before that I had been diagnosed with RSD (Reflex Sympathetic Dystrophy).  Then they (they being whoever decides what a diagnoses should be, etc.) changed the name and symptoms. But my doctors continue to call it RSD.   I see a pain specialist once a month for Fentanyl patches and Oxycodone. Tomorrow they're going to try a Stellate Ganglion Block to see if that will help the pain in my hand.

My right hand is deformed, and the Ulna is now 3x normal size.  My orthopedist says it's possible that this all stems from a broken wrist I had when I was 8 (or thereabouts).  I gotta disagree. I've had much worse broken bones but I would think that an injury almost 40 years old, would suddenly cause my hand to have so much pain and deformity.  I had a 3T MRI on my hand and I don't remember seeing any thing that looked wrong with my wrist. My orthopedist said the same thing he always says "Arthritis".  Uh uh.  If this was arthritis, the crippling kind, it wouldn't be happening in just one part of my body, my hand.  And I don't believe that the break involved the Ulna.  It was like a hairline fracture from what I recall.

Now on to the Specs:

Starting Weight               241

Post Surgery Weight        139 at it's lowest

Weight Gain post surgery   50

Weight Maintained            184 - 187 consistently

______________________________________________

Onset of RSD - 2-3 years  157

Weight Maintained             140 for two years now

Lowest Weight Ever           138

I'm in size 7/8 jeans but I need to go down another size. I have other AI disorders that cause a lot of fatigue, pain, etc.  The 'pooch' from having kids and weight loss was a pooch until RSD; losing 50 lbs as rapidly as I did, now it's just ugly skin.  It's only a matter of time before I fit into those 1980's jeans with embroidered back pockets and go waist high that I actually got in the 1980's and kept with the foolish belief I might someday fit in them again.  Without the excess skin, I'd be wearing them right now.  Remember the old joke? "Did you hear about the latest in designer birth control?" "No, I didn't" "It's called Sergio Prevente'!" 

My daughter said something that kind of smacked hard.  She brought over a pair of Capris she wasn't wearing anymore.  One look told me they were too big.  I asked her what size they were, though I could see the label, she said "10". If they don't fit her, and I remember when she was a size 10, why would they fit me?  She practically screamed at me to try them on.  First of all, I don't take orders from my kids and second, I have never worn capris and never will. I got little tiny bird legs.  Then she commented "You lost all that weight but you still have boobs?!"  I feel like a stick with boobs. Yeah, I lost all that weight but didn't lose my boobs.  They sag a little more than they used to, age'll do that to anything - it's gravity - but I don't understand why she feels she must weigh less than me or be smaller than me.  I'm 5'7.5" and she's 5'4".  She tried to see if her hands were smaller. She was getting desperate.  We wear the same shoes, same ring size.  What's the big deal?  Now she's not speaking to me.

I had back surgery last year, and while I won't comment about how I feel about the doctors involved, now I have a seriously nasty scar. It's like opposite of Keloid.  Add that to the parts of me that look like a Shar Pei and I'm really disgusted.  I tell myself I should accept myself unconditionally daily, and supposedly in 30 days I'll believe it.  But the mirror doesn't lie.  What am I going to do about all this sagging skin?  I can live with my thighs, I can live with my arms.  But the sagging skin makes a 'flapping'sound during certain activities. I can't say that for sure, because I had plenty of co-morbids going, but they were just starting and ended immediately with surgery.  I don't even look like my the last pics I posted.  Things I bought before that never in a million years fit, fit now.  Tiny tees that teens wear fit.  

I'm not built to be this skinny.  I have broad shoulders and big chest.  I can deal with the pain with assistance from pain management physicians.  I think that the Hyperhydrosis is related, but to which disease/disorder I have no idea.

If anybody else is experiencing the same issues, and have gotten a Dx or know what the heck is going on, I'd appreciate hearing from you.  I also have Sjogren's Syndrome, Hashimoto's Thyroiditis, Fibromatosis, and other stuff I can't remember. Oh, right, Cognitive Function Deficit.

Getting ready to list the house.  11 years ago it was a hidden subdivision that was beautiful. The property gently slopes to the creek and recent annexation has caused nightmarish changes. New population-dense subdivisions on every side. They're building a hike & bik path on the other side of the creek.  I don't know what more is coming, but it's more than I'm willing to live with.  I bought cheap and Annexation that permits business from home, horses, etc., and the size of the lots (avg 5 acres) have raised the values; I should be able to walk away with enough to get another place and pay off all my debt. Fingers crossed :)

So that's my June 2016 update.

Lisa

Saying goodbye and good riddance to 2013, being superstitious as I am, was cathartic.  Or so I thought.  But I should have known better.  Towards the end of 2013, I started having issues that nobody could make sense of. My Orthopedist finally decided I had RSD (Reflex Sympathetic Dystrophy) which has been changed to CRPS (Complex Regional Pain Syndrome).  That doesn't fit because my symptoms are not regional, they are systemic.  Inclulded with RSD is rapid hair loss.  I should have caught that, I was cutting my hair or sitting on it frequently, but I didn't really give it much thought.  When the hyperhydrosis was realized, I'd had it for so long I never considered it a symptom of anything.  But the loss of appetite - that was new. It's completely gone. I seldom eat and my weight is suffering.  If I get much lower, I'm going to be in trouble.  Auto-Immune disorders are supposed to be "self-limiting", but none of them have gone into any form of remission, and clothes are too big and I have to buy new.

I stopped counting how many issues I have going on now, I can't do anything about them other than reduce stress, and that's not something the ex is allowing me to do.  So I come here to purge my thoughts and feelings into my blog and hope things will get better without any reason to really believe they will.  But without optimism, well.. I'm not ready to go there yet.

For most of my teen and young adult life, I wished for anorexia.  I would have tried bulemia, if I had that kind of self control. But I never did. 

A recent slew of new symptoms hit and I went to see my Upper Extremity Orthopedist - new doctors, new disorders. I don't have Type II Diabetes, I don't have High Blood Pressure, Edema, liver disease.  That should all be good yes?  But, because Obamacare doesn't officially start until January 1, and my Medicare Open Enrollment ends December 7, I was denied coverage due to pre-existing conditions - which is funny; because I was blackballed in 2002 before I had the bariatric Roux n Y.  Then I shrunk down to 138 which looked almost sickly.  And like most, the weight crept back on.

A new diagnosis explains what has and is happening to me now.  "Reflex Sympathetic Dystrophy" - actually called something bigger and more intimidating, but the signs were there for a long time.  Of course. Catching it early would/could have minimized or reduced even maybe halted it's progression.  But nobody put the symptoms together. I sat in front of my Orthoped's therapist, sweating like it was a sauna, the AC was set to 70.  In any meeting, with no notice, I would break out into a drenching sweat. I would mention this to my PP and he offhandedly mentioned some kind of sweat gland removal.  But the other symptoms were less pleasant.  My hair was growing at sligntly more than an inch a month; my colorist/stylist was freaking out.  She'd just cut it!  And 3 weeks after a touch up, I already had a 1/2" new growth.  What I hadn't noticed, because the other stuff was much more prevalent, was the loss of appetite. I ate Cheerios and yoguft exclusively and little else.  The last time I got on a scale at my doctor's office, more out of curiosity since the size 12 genes no longer fit, it said "184".  That was cool.  At least moving in the right direction.  I had no idea what was to come.

The pain...  The pain from Sjogren' Syndrome was management. The pain from RDS is not so manageable and the pain is frequent and strong in it's intensity.  

My daughter made a comment about my arms today and I told her to "Get the Scale".  She dutifully stood by.  163.5  That was 20.5lbs.  Then I took off my jeans but left my shirt and undies off.  Another pound and a half gone.  Finally, I went to the bathroom and weighed myself after:  160.5.  A total of 23.5 pounds lost in maybe 3 months?  And it's still going.  I have no appetite whatsoever.  

Compounded by the stress of a cruel, ugly divorce and ex who doesn't think he is responsible for debts that are clearly his, I can't even afford my medications.  I did find one plan (Medicare Rx Plan) that covered 100% of my meds including the one I paid nearly $1, for a 90 day supply,.  If Obamacare had extended it's open enrollment through March for Medicare, my old "pre-exists" would be a non-issue.  Maybe next year.

Posting a new pic or few.  If this doesn't stop by 145, this will be a problem.  I'm 5'8" and still have my DDs (eau naturale).  Will see Rheumatologist in new year when he's on my new plan.  Just blogging life, and hoping, praying, begging ane pleading that 2013, the last year ending in "13" that I will ever live through again, really ends and the next year will be better.

Happy New Year to my Friends and new friends at OH.  I still come here when I need support, even if it is reading others' stories.  Thank you for sharing your journeys with me.

 

Lisa

I had a great weekend.  I went down to stay with my BF for the weekend.  He cooked but no matter how amazing it smelled, no appetite.  When I came home, my daughter, who didn't hear about Friday's visit to the doctor, commented that I looked likeI had lost too much weight.  Said my shirt was hanging on me.  I don't think so; I still have that ugly little pooch from having kids and weight loss.  But now my Ortho tells me I have RSD.  The thing is, I haven't had any areas of burning pain.  I have no appetite. I look at food and try to eat, but the only thing I can eat over and over is yogurt and cheerios.  I know, it's weird.  My BF wanted to know if I was on some kind of diet.  The only thing that really supports the RSD is my hair grew 1" in 6 weeks, and a stabbing, burning pain that I've had for years that feels like it's a stab in the back that moves up the my neck and stops.  But there is no discoloration or loss of movement.  What did bother me was that if I stretched my hand out and moved my fingers, the entire hand went numb.  If I bent my elbow, my arm and hand went numb.  I've had 2 surgeries on the right elbow.  It's had some swelling, and thin skin, no wrinkles.  I guess I need to consult with another doctor.  I've also had this bizarre sweating that started a couple years ago.  I associated it with eating but it comes on even if I haven't eaten.  

I don't mind the weight loss, but it seems rather rapid.  Two weeks ago I couldn't get into smaller clothes - couldn't even get past my hips.  Now I'm in the smallest jeans I've ever owned (7/8) and they're not even tight.  This would put me under 150 and that can't be right. The last time I got on a scale I was 178.  That's more reasonable.  I guess I need to ask my rheumatologist about this.  I should be thrilled that I'm losing weight, but I don't agree with the DX because the main symptom is absent.  What if I don't get an appetite back - or worse, that if the nerve block works and I do get my appetite back?  I supplement he hell out of everything, but I don't care that I am losing weight and don't want to eat.  I may order a pizza, eat one piece and be done.  When I think about eating, or if I feel hungry, as soon as I look at food, the hunger disappears.  Some other boards, like RSD boards, say that's normal.  So I have uncontrolled sweating that is outrageous, and my hair is growing too fast.  But the burning pain - where's that?  I've had that for more years than I can count and can't really associate it with any surgery or trauma except maybe gall bladder?  I think I need another opinion or two or three, but I don't have the $$.  Every doctor will cost me $45 and after January 1, I don't know.  

I guess it's time to dig for more research.  I don't need this.  I really don't.  How'd I go from a size 12 jeans to 7/8 in just like a month?  The new bra that was tight and gave me backfat isn't tight anymore and I have no back fat.  I should be happy right?  I don't want to be sick anymore.  Wasn't the Sjogren's enough?  Isn't it bad enough that I wake up with the Saraha desert in my mouth and can't swallow anything and even water hurts and burns for the first drink of the day.  Now this.  I'm divorced, life is good, I'm happy, I have a very caring new BF.  Why does this happen to me now?  

Nothing good to say, that's what I get for  going to the doctor on Friday the 13th.  I knew better too.

It's been eons since I've posted.  I've had more ups and downs (mostly downs) for the past few years.  But today I am a new and better person.  

I gained back some weight - like 50lbs.  I was miserable in my life, and my marriage and realize that I had been for so long.  I think it was the night my morbidly obese husband looked at me and told me that he no longer found me sexually attractive that I started a long, slow road to oblivion.  Over the next ten years, he chipped away at my self-esteem, a little at a time.  And before too long, for every bit of self-esteem I lost, I gained more weight.  This would not do.  I started losing when I got myself together enough to lose about 265 pounds of soul sucking fat and started my life with my kids.  He had made me believe I stood no chance on my own, not in Texas, Texas doesn't like alimony and it certainly doesn't allow it for more than three years.  Once I got an attorney, and once I realizled that my sociopathic, misogynist husband had lied to me, I realized I could be okay on my own.  And I finally got up the nerve to get him out.  The divorce was final this year.  But as soon as he was gone..  maybe a few months after he was gone, everybody here started to relax.  At first just a little bit, and after awhile, a lot more.  I stopped punishing myself for making a mistake that I wasn't the first one to make (I was wife #2) and started back on my basic tools.  Gone were the Newton Chocolate Raspberry crisps that Nestle doesn't even make anymore.  It was an addiction, I was finally glad they were gone.  Then I gave up most sugar, even the things that came next from Nestle, whatever they were, I was over them.  I started living on yogurt and cheerios.  I wasn't even thinking about weight loss, that was merely incidental to giving up stuff I had no business eating.  

In February 2012, I started having pains in my abdomen.  Nothing new, hell, vomiting when I'd eaten something too quickly or too much of was SOP around here.  But no matter how much I made myself throw up, the pain would not go away.  I decided to go to the ER around midnight.  Okay folks, here's the deal about NG tubes. You could walk in with a Tee shirt that said "NO NG TUBE WITHOUT SCOPE!" and they'd still do it.  They "measure" the approximate distance from your pouch to the top of your throat and then they put a bend in it.  It's every bit the horror you've heard.  It was INCREDIBLY AWFUL!  The staff was pretty sure I had an impaction in my intestines.  I disagreed, I'd been moving things along just fine.  But you also have no say over your care either.  That's because they give you wonderful painkillers.  I've already been taking pain killers - you should probably just expect to acquire some kind of auto-immune disorder after surgery.  I actually got 3 or 4 just from the stress of my marriage.  The nastiest thus far being Sjogrens Syndrome which I learned about watching Mystery Diagnosis and another woman talking about my symptoms.  There was actually a name for this?  Not only that, there are treatments.  Anyway, the tube, they reasoned, would release the gas that was building up from the blockage and I would get some relief from the pain.  Mind you, there was no distension or any indication of blockage.  But they put the NG tube down my nose, down my throat and into my esophagus.  They were perplexed for despite all of their measuring, they had not gotten to my stomach.  The nurse and her stethoscope listened while the other nurse kept bobbing the tube up and down making it longer until the nurse with the stethoscope was satisfied.  The NG tube is a rigid, hard piece of tube that you feel in the back of your throat. Every time you move, you feel it in your body.  It hurts a lot.  By the end, I was in ICU (for lack of a bed on the surgery ward) and got no sleep because I did not have my pills.  I wasn't allowed to have anything to eat or drink.  If you know Sjogren's then you know the hallmark is extreme dryness of mouth and throat.  This was the worst thing I had ever gone through. You think you're dying of thirst after the bariatric surgery?  This makes that look like sand through your fingers.  I was now over 12 hours with no medication when strangers told me they really didn't know what was wrong. They couldn't agree, so they were just going to have to do exploratory surgery.  This was not good news.  Hospitals are horrible places for me. Nobody ever allow me to take the pills I need to sleep, this place wouldn't give me anything to help ease the dryness that was making me want to die.  After surgery, I was told the doctor came by and told me everything. Does anybody ever remember being cognizant enough after surgery to even remember a visit from their surgeon much less what he or she said?  You have my admiration.  I remembered nothing except it had been a day and a half since I'd gotten any sleep and if I didn't get some liquid soon, I would probably get angry.  They really didn't care if I got angry.  So I started playing a game.  What did I have to lose?  Some idiot had attached my IV to my arm right in the middle, so if I bent my arm, the alarm would sound.  I started bending my arm just enough for the alarm to sound.  And then I taught myself to just phase out the sound.  It drove the night nurse (Ratchet I believe was her name) crazy.  With no light going on over the door, they had to check every single room.  Every 20 minutes without fail I bent my arm.  As a way to get me to stop, they finally woke up the surgeon who said I could have some ice chips and something for pain.  They don't seem to know what it's like to live with a pain disorder.  Sjogrens is such a nifty little AID.  (auto immune disorder just to be sure).  Not only does it cause dryness of your mouth, throat and eyes, it causes pain.  A lot of pain. And the more stress I was under the more pain I had.  What's really pathetic was my purse was right on the window sill and in my purse I had pain pills, my tranquilizers and my Sjogren's medication that would relieve my Saharan desert mouth.  Why didn't I just take them??  I remember after finally making Ratchet so angry with the alarms she started ignoring them, I went into the bathroom and saw a few drops of blood on the floor.  I thought to myself "helluva time to get my period" but there was too much blood so I thought I should push the button since I had no pain but was starting to wonder how much longer I could stand.  When Daylily or whatever her name was came into the room to see what I wanted (Ratchet wouldn't come herself) the bathroom looked like a crime scene.  The IV had come out of my arm - they never put it in very well to start with - and it had just been pumping out through the still-in-my-arm needle.  I just looked around and apologized to Daylily for getting blood on her.  I finally sat down and listened and she went screaming down the hall "BLOOD!  THERE'S BLOOD!!"  Yeah, there was blood.  A whole lot of it.  She's absolutely right.

This really nice nurse who I didn't know came in.  I didn't know this hospital had any really nice employees.  She redid the IV, helped me get the blood off of me and gave me a clean gown.  And ice chips.  Later, the doctor came in with pictures.  What am I looking at?  That's me?  My abdomen looked like underground caverns, stalactites and stalagmites were everywhere.  Those, the doctor told me, were "adhesions".  Adhesions look like that?  Wow, reality check. The second picture was much more interesting and probably the reason for the pain.  It was my appendix.  I looked at it for awhile.  Nope, can't be.  It doesn't look like an appendix.  Oh, they assured me it was not only my appendix, but that somehow it had gotten stuffed with stool.  Now I'm recalling what I know about anatomy, and the tiny little vein sized path to the appendix and the size of what appeared to be in it.  Not possible. Not even remotely possible.  The doctor told me had I not come in I would have been toxic in two weeks or less.  I'm way too much of a weenie to not go to the hospital when I'm in that kind of pain.  And I do know pain. Having developed an interesting form of Sjogrens, the tendons in my arms started tearing away from the bones starting in my shoulders, moving down to my elbows.  I couldn't tell you how many procedures I've had to repair these tears and the pain I've gone through.  I've been seeing a pain management specialist for at least 5 years now.  But there was no way I was spending another night in that hospital. I didn't care if they had to transfer me by ambulance, I wanted out. There was no way I could survive another night with Ratchet.  Uh Uh.  I didn't care that I'd just had major abdominal surgery, it wasn't the first time. I'd had 2 C-sections, a gall-bladder removal and now this.  I promised to do nothing just get me the hell out!

And they released me.  I started writing a letter to the hospital, but when I saw the lobby (not the way I came in), and saw how much money they had spent on art glass installments while the nurses were using clipboards - paper clipboards!  They had to call down to the pharmacy for any meds. They had no standard patient bracelet scanners, they had no computerized charts.  Paper charts in a hospital with close to a million dollars in art glass installments.  What a freaking waste!  

Now I'm much closer to my goal weight. I won't touch fast food and generally stop after a few bites of anything even if I'm still hungry.  It's enough.  I'm back into my size 9 pants and at 5'8" I'm only about 15 lbs from my personal goal - I'm already at my doctor's goal.  So even now, 8 years post op or more, you can stop falling.  You'll always have the tools, and you always know how to use them.  I'm diligent about my vitamins and calcium, I inject my B-12 every other week but get it from Amazon instead of the pharmacy since I don't have major medical anymore until I can get on a Medicare plan.

I've got a new fella and he is a constant reminder that I am a vibrant, beautiful, sexy woman who is stronger than some lowdown guy who beats up on women and kids verbally.  I'll never have to live through another year ending in '13'.  Things can only get better :)