This is a warning to any of you scheduled for abdominal surgery! I learned the hard way that abdominal surgery often involves the use of gas to inflate the belly during a procedure. This gas goes into the belly cavity, not into the gastric system, and must release over time out of the body. To those of us with princess-and-the-pea skin sensitivity, it can be as painful or more than the surgery itself. I had surgery a couple of weeks ago to releave my GERD symptoms, called fundoplocation, using multiple lapriscopes. In order for the doctor to get better viewing of the stomach and lower esophogus, my belly was inflated with gas. By the time I awoke from anethesia, the pain in my shoulders far exceeded that in my belly, and did so for nearly 7 days. My surgeon said it usually passes in two. So pain management beware! Gas pain management can be equal to or exceed surgery management if you're as sensative as I am! Ohanamama finally back in Hawaii after three weeks in La Jolla CA at Scripps LaJolla Hospital and a local hotel.View Thread
I've had Fibro, and about 12 other auto-immune conditions for 10 years now, and mood disorders since I was a teen (I'll be 54 next month). My pain is now, and has been from the beginning managed with strong narcotics. I hated making the choice back then, it cost me my job and my lifestyle, but it was that or the pain.
I've been lucky in that I could tolerate the meds and my husbands insurance covered them. Our marriage is horrid -- I'm in it only for the coverage. It's one of the many choices I've had to make.
The Fibro has taken a back seat the last two years to a severe endocrine situation. Have you ever had your cortisol tested? After years of fatigue that was unresolved, we added a cortisol test and learned it wasn't CFS after all but an as-yet-cause-unknown inability for me to produce cortisol. This is the one that is life threatening for me, after a ten-year span of hearing nothing but "it's a nuiscance, and may be painful, but it won't kill you" as each auto-immune diagnosis was added.
So Fibro is a huge part of my life because of the pain I'm in, the meds I take to avoid that pain and the side effects I endure as a result, and the life choices I've had to make because of it but there's a new focus for me.
So if my Fibro worse? Hard to say. My life certainly is. But in other ways it's better. I'm not a Type-A any more. I see my daughter 10 hours a day instead of 2-3. I've come to terms with my marriage and my family life and can't say that I'm angry at anyone anymore. The things I enjoy doing (coloring, crafts, bloging) I get to do every day if I want without having to worry about work, laundry, dishes, etc. -- because I don't let myself worry about anything anymore. The new me is so laid back, my place is a mess, and I don't care!
Good luck to all the rest of you. My heart is with all of you, as are my prayers. Social Security is possible -- I'm one of the lucky ones -- so don't give up hope!View Thread
For years now, I've found the non-wire, cotton bras from Lane Bryant to be my bra of choice. There's a fair amount of support and the cotton is nice and breathable. There is no store near me, so I have to do mail order, but have no problems. Their smallest size is 38C (I believe) and they go up, up and up from there. The price is about $25, and most of the year they offer by two get one free. I wash and dry mine, which I shouldn't, and each one lasts about two years. If I treated it right, it would probably last twice as long. Some fun color choices often available, along with matching panties, so we bigger girls can look a little "smexy", as my daughter would say.View Thread
I was following a thread that asked "what is your biggest pet-peeve about FM". Near the bottom of a 2-year response, someone posed the reverse question, and I thought it would be interesting to see the kind of feedback that idea gets. You see, personally, I find having Fibro to be one of the greatest growing experiences of my life! Since my diagnosis, I have slowed down, learned more about myself and have finally learned to say NO! I never much liked who I was in my 20's and 30's -- aggressive, hungry and an almost mean personality. Now, I laugh, relax and really enjoy what I can of my life. If it weren't for FM, I could never say that about myself. I've had all the same struggles as you--rude doctors, years for a diagnosis, misdiagnosis, poor pain management--but now I have great docs and great care. I'm in as good a place (except for spousal relationship) as I can hope to be. Finally, I'm glad my daughter remembers the good spirited near bed-ridden me of today versus the high-powered, rarely present, cold, Type A Mom from her life as a toddler. How about you? Has this been a blessing in disguise?View Thread
TDXSP08 - boy, can I relate about the pain meds doc, and not having an alternative for miles. In my case, it's an island away. We only have one doctor on our island licensed to prescribe heavy narcotics. When I first moved here (Hawaii) from California and had insurance issues, I had periods of time when I did have to go without my heavy pain meds because of developing a new doctor relationship here, and loosing coverage in California. My sympathies and complete agreement on your feelings about your meds -- when someone suggests change I go crazy. It took nearly ten years to get this mix right, don't you dare mess with it! My memory stinks too and I've found that Alzheimer meds have really helped keep it from getting worse. Just a thought. View Thread
Thanks to all of you who have replied so far. In summary, I do have one child (I developed auto-immune illnesses after her birth that caused me 3 miscarriages so was told to stop trying) and raised her alone because my husband would have nothing to do with me (or her) once I got sick, and fought mightily with depression because of it. And I had to retire at 42 from a very successful career (Director at a multi-national, $50 million company) that I still dream about and miss every day. And yes, I roll over, not sit-up, every morning after taking my first hand-full of meds for the day. So to compensate for all of the losses, I've stopped the old "wants" and replaced them with new. Now, I want to be awake and cheery when my daughter gets home from school. I want to read a book every month. I want to learn to sing. I want to go for a walk. I want to email or write a friend I used to visit. And I've learned to stop wanted what I know I can no longer have. I can't be Queen--so why want that. I don't use Fibro as an excuse for who I am, it's an explanation for why I can't be who I used to be. It's why the laundry is piled up. It's why I forgot to send a birthday card. It's why they know I love them, but don't show them they way I used to. It's the new ME! And I like the new me. What choice to I have? Love me, or be angry. I choose not to be angry.View Thread
I believe it's supposed to be HGC, which is Human Growth Compound. This newest diet is very successful for people who are on multiple medications because it does not interfere with any meds as it is a natural human hormone produced during pregnancy. It has been reproduced in the lab, and is (I believe) injected for a short period of time for weight loss. Then, as mentioned, a break is taken, then is restarted again. I live in Hawaii and this has been successfully used here for weight loss for over two years. It is my understanding that it is very expensive while being very successful.View Thread
I moved to Hawaii so there would be no temperature changes and finally got some relief. I've lived in the suburbs of Chicago, San Francisco, Boston, Dallas and San Diego and the pain during season changes used to be nearly unbearable. It wasn't until I got somewhere with no seasonal changes that my pain cycles stopped. Very drastic and not the type of move all families can make, but it was the only one that worked for me.View Thread
My biggest pet peeve: The ones I love the most understand the illness the least.
And to the person who asked, is there any benefit to having FM, I say unequivocally YES! I have slowed down more, learned more about myself and learned to say NO for the first time in my life! I never much liked who I was in my 20's and 30's -- an aggressive, hungry almost mean personality. Now, I laugh, relax and really enjoy life. If it weren't for FM, I could never say that about myself. I'm glad my daughter remembers the near bed-ridden me versus the high-powered, rarely present, cold, Type A Mom from her life as a toddler.View Thread