I have been totally bummed

Discussion in 'Fibromyalgia Main Forum' started by TXFMmom, Oct 6, 2005.

  1. TXFMmom

    TXFMmom New Member

    I was a very talented medical professional at the top of my field before this dd got me. Mine may have originated due to having had a pituitary adenoma which infarcted and took out part of my anterior pituitary.

    That occurred despite my attempts to get my doctors to listen to me. I had symptoms and had begun to gain weight, have fatigue, have difficulty sleeping, and other things. I was told I was "trying to be superwoman."

    So much for doctors listening.

    At any rate, I have gained tremendous weight, had to quit practicing due to the sleep disorder and short term memory loss, sleep disorder, and then having injured four discs in my neck and four in my back.

    I have gained so much weight, developed a very difficult form of glaucoma, had to have surgery after lasers did not help, the surgery failed, had to have it redone, formed a traumatic cataract from the second surgery, popped a disc while having the second glaucoma operation on the operating table because they didn't put enough pillows under my back.

    I need to have a gastric band, but the insurance is giving me trouble. I am going to go to their office and sit there and scare everyone, if I have to.

    I was confined to an electric wheelchair due to my back, and arm problems when my back was really bad. I now have to use a scooter if I go any distance at all.

    I have developed a mitral valve problems and a tachycardia because I took Fen-Phen.

    I then developed bilateral thoracic outlet syndrome, but having the neck facet joints injected and the neck manipulated relieved that.

    I am becoming insulin resistant, keep sinus infections, get yeast infections from the antibiotics, have begun to have rectal bleeding and have a history of colon cancer in the family. I had four precancerous polyps removed last year and have to go back for more because of the bright red blood.

    I was a gourmet cook but that is down the drain. I had an IQ of 160 and now, sometimes I can't remember if I had breakfast, transpose numbers, will repeat a date or a time and then write down something very different.


    I have ground my teeth down and cracked them and have ten crowns.

    I have sleep apnea from the weight gain, but my other sleep is so disturbed that MY DOCTOR GOT A RELEASE SO HE COULD USE MY SLEEP LAB AND MY SLEEP TAPE AT A NATIONAL MEETING, WHICH IS DEFINITELY NOT GOOD. My husband cannot sleep with me because I kick and move all night long. It is not a good thing when the sleep tech tells you that they HAVE NEVER SEEN ANYONE THRASH ABOUT LIke YOU.

    Now, I overdid it preparing for Hurricane Rita and melted down. I developed tendonitis in my right arm and elbow and it swelled to twice its' size. Voltaren has helped but it is tearing up my stomach.

    My cholesterols are fine, but my insulin is 27 and my CRP is 27.

    I was an accomplished, intelligent, highly motivated, go-getter, aclaimed in my profession, spoke on the subject throughout the country, taught, taught Sunday School, was the Team Mom on all my son's athletic teams, had the energy of three people.


    I shouldn't be so whoa is me, as we all have very severe problems, but I miss who I was and I hate who I have become and I just needed to vent.

  2. jaltair

    jaltair New Member

    That's what everyone here does at one time or another. Thank goodness for the Board -

    Hope you feel better soon. Going to bed now, will check in to see how you do.

    Warm wishes, Jeannette
  3. rileyearl

    rileyearl New Member

    Like crying, it can be healing!

    I'm sorry you're feeling so bad right now. You have a long list of really bad stuff, so you need to grieve and work through the rage over such unfair and mean things happening to you. I used to be ms. multitask and take on so many clients and projects that it was ridiculous. Now I find myself having to recheck everything about 10 times before I feel ok about it.

    A couple of things caught my eye. One was "becoming insulin resistant." Did you happen to read the thread started by Hidlyn about being very much overweight? One of the posters, Amanda, I think it was, had been diagnosed with Metabolic X Syndrome. Maybe you already know all about it, but it was news to me. Once she started on the medicine--fog sets in and I can't remember the name, but it's a cheap and common pill used for diabetes--she started to lose weight really fast.

    I have that on my list of "must ask the doctor about" things for my next trip to the FFC.

    The other thing is how sad you sound. Are you taking an antidepressant? If so, maybe you need a stronger dose or something different. With so many issues to address, it will be a lot easier to start, if the sorrow takes a step back. Please just disregard any of this, if it doesn't apply.

    I hope you feel a little better for venting. Here's a hug!

  4. AnneTheresa

    AnneTheresa Member

    I'm sorry to hear you're suffering and have so many critical issues to face all at once. I can relate to much of what you are going through, but most of all your sad feelings (of missing the person you used to be) is what touched my heart.

    Like you (and like many people on this board) I was a highly motivated and accomplished person with a fast-paced career and family life. Then, when I became disabled with severe fibromyalgia, my life changed immensely. Suddenly I was unable to accomplish more than a few basic tasks each day, was living on a very reduced income, feeling isolated and vulnerable.

    Since retiring due to disability in 2000, I've been trying to figure out who I am without the trappings of a career and daily meaningful activity. Losing the sense of identity that I had through my work and social contacts, as well as facing the empty-nest syndrome left me with a sense of personal poverty. I found that to be one of the most challenging aspects of living with chronic illness.

    After several years of upset and struggle, I finally decided to appreciate this time in my life as an opportunity to focus on myself and nurture my body, mind & spirit. Instead of cursing this illness, I've been searching for the hidden gifts and opportunities within these changed circumstances. My shift in attitude didn't change anything (I still live with a lot of pain, feel isolated, vulnerable, etc.)but it does give me a more positive frame of reference and that in turn makes life more enjoyable.

    Grieving for the person you used to be is a very natural and healthy process so please don't feel bad about feeling bad. I realize you have much to deal with and I pray you'll be able to work your way through these issues, find resolution and peace.

    God bless,
    Anne Theresa
  5. bpmwriter

    bpmwriter New Member

    i've heard that if you find a particular song running through your head, it often reflects your current state of mind or the answer to a problem. yesterday in the shower, i noticed i was humming that old whitney houston song with the lyrics that go, "learning to love yourself is the greatest love of all." personally, i don't care for whitney houston and don't listen to much of what's on the radio, so it seemed really odd that this song would come from out of nowhere and into my head.

    i believe the vicious cycle begins we dwell on how unfair it is (our illness), and that god must hate us, and if god hates why not hate ourselves? i know self love is hard to put into practice when so much of what we once liked about ourselves has been taken away, but in our heart and soul we're really the same person. the best parts of us are eternal.

    hugs and love,
  6. fivesue

    fivesue New Member

    You miss you! You have become someone you don't want to be...I am so sorry for all your serious health problems. I hope it felt wonderful to pound on the computer keys while writing. It helps me feel better when I really bang something out!

    I miss me, also. But, this is who I am right now, and I'm not comparing my illness to yours as I am still able to walk, etc. But, I still miss the person I was, much like you in a different profession. A new phase I wouldn't have chosen is here...

    Feel better today. Know that your are cared for and vent away; we've all done that, and I don't think I've ever heard you vent before. You are always so articulate and upbeat. I guess it WAS your turn.


  7. orachel

    orachel New Member

    It is so very natural for you to "grieve" for all that you worked for and accomplished in your "former" incarnation.

    I do it too, and I haven't been dealing with this nearly as long or had anywhere near the sort of degenerative conditions you have developed. I'm so so sorry that this has happened to you!

    And you NEVER have to apologize for reaching out for help here! These wonderful people on this board have literally "held me up" in some of my darkest days. Not knowing what your body is going to throw at you next is extraordinarily scary. I know it...we all know it. You are definitely not alone in this!!

    As for the thrashing, I know very little abt your other conditions so I don't know abt interactions et all, but I had restless leg syndrome like a BEAST. My poor husband would often wake up (sometimes with bruises) because I flailed around like such a nut. 1 mg of Klonopin at bedtime helped A LOT. Maybe look into that?

    Also, we have quite a few things in common (though most of our symptoms are waay different). I too had worked hard for a number of years to EXCEL in my chosen field. I recently married, and "downgraded" my postion because my financial needs had changed a bit, and I was willing to sacrifice lots of money for more time with my husband and family...plus, I recently moved cross country from Florida, and when I got to Ohio I decided that I'd rather have "stability" of big corporation (hopefully one I could retire from) than the bigger money but less stability of smaller corporations...even my own. This was all before I got sick, but I realize now that my "sluggishness" over the last few years, which quite frankly just seemed to me at the time to be my "professional drive" lessening, was actually precurser to this DD.

    I was an english major at UCLA, and have always prided myself on my ability to motivate others and express myself well in verbal and written forums. If you'll notice, I go thru days when I'm on here a lot (propped up with pillows, but I'm here! LOL) and writing long posts, and days when I'm barely around and writing one or two line posts.

    The reason for this is that my "brain fog" has gotten so severe so quickly that there are MANY MANY times when I have an enormous difficulty (sometimes its flat out impossible) with reading and writing! I am still able to think very complex thoughts, but speaking them they get all jumbled (you wouldn't believe some of the craziness coming out of my mouth! It surprises me as much as my loved ones, as that was NOT what I tried to say! LOL....I just told my husband to go get me something to drink from the BATHROOM!...I'm often inverting 'similar' things, like names for rooms, names of friends and family, dates...all sorts of nuttiness!). As for reading, I used to read upwards of 1000 pages weekly, often simultaneously reading multiple books at the same time (not exactly same time, but I'd be working on a great novel, then put it down and read a biography or a reference book, etc). This was while I was working upwards of 40 hrs weekly, taking care of my family and my home. Reading has always been one of my greatest passions. Now, I'm lucky if I can pick up a book...even one I am EXTREMELY interested in and excited about, and read for longer than 5-15 minutes...completely undisturbed. I used to read, talk to my hubby, and watch primetime tv simultaneously! lol I'm lucky if I remember what I've just read, and find myself reading the same page again and again for a while before I even realize it. Sometimes, I simply cannot read at all. All of the words just seem to jumble or swirl together and theres no making sense of any of it. I have 20/20 vision, and am a very bright cookie. This is TERRIFYING, but from what I understand, not overly uncommon.

    Finally, as for writing. I am often able to express my thoughts in writing (though never made so many typos or errors in language in my life! lol) when I'm here, but there are times when I simply CANNOT type at all. I can think Very very hard each letter that I want to hit very slowly...but sometimes from my brain to my hands theres a big problem. I simply cannot make my fingers hit the right keys. Sometimes B becomes D.....similar words such as "when" and "then" get shuffled around. The frustrating thing is that my thinking is working just fine (most of the time, but that's another problem...sometimes that's very jumbled as well).

    I can no longer drive, because I'm literally a hazard to myself and others on the road...red lights become green in my head!!! I had to ask my godmother to relocate from another state to move in with hubby and I to "babysit" me, as hubby works all day and I have a tendency to leave gas stove burners on all night, leave heating pads on...forget to eat for DAYS on end....the list goes on and on.

    This scares the everlovin' crapola out of me. I still have goals and dreams (even if this DD is taking my body, I can still write...am actually thinking hard about a fictional account of women with this DD)....but though I'm extremely motivated to begin (hate nothing more than sitting on my bum, but I'm in extreme pain...pain not managed at all...so there's very little else I can do other than "shuffle" around a bit on my funky hips and knees so my body doesn't become hopelessly "deconditioned"), but this book nor any of my aspirations can happen until these FOG and horrific neurological symptoms go away...or at least lessen. This stuff turns on and off seemingly in a moment. I'll be typing along, and suddenly notice that nothing I'm typing is legible (or even english! LOL). I have to cancel usually at least one doc appt or physical therapy appt per week because I'm simply not able to articulate myself verbally, and not able to fill out their simple paperwork. It is humiliating, I know.

    Reason I'm going into this whole diatribe with you is so you know that you're not the only person who HATES the horrific pain and problems that your body is putting you through, but really MOURNS the seeming loss of your intellectual ability....Hey, My body goes, that sucks bigtime, but if my mind goes too? Where does that leave me, right?

    What you have to try so hard to remember is that YOU ARE NOT THIS DISEASE. All of the things you "were and did" you still "are and have accomplished"....your symptoms have just made your standard of living and abilities AT THIS TIME much more limited than what you're used to and worked so hard for!

    I'm not currently diagnosed with depression, but I've begun seeing a PHD who specializes in Pain Management. She's a (brilliant!) therapist, and she lets me vent about what I'm going thru, then we work together to come up with Real World solutions to these problems. She constantly reminds me that I am an intelligent and accomplished woman who has been "afflicted" with this "hopefully temporary" (because they are working so very very hard to find answers for us! Don't lose hope!) set of symptoms. We come up with answers and safeguards to my biggest problems. She makes me feel amazing, quite frankly, and it is my weekly, or biweekly "reality check" just to remind me that I am not this disease.

    Perhaps look for someone like that in your area? If you like, just page me and tell me where you are, and I'll ask her next wednesday if she happens to have a referral in your area.

    This is a horrible, wretched awful disease, but someone just reminded me yesterday that "when God closes a door, He opens a window". You just haven't found your "window" yet, hon!

    Hang in there, we are all rooting for you! Never feel guilty about posting problems and concerns. I think of the members here as my "line of defense" against this DD and sometimes against my own negativity. It can be so very hard to remain positive in the face of such adversity, but the people here continually keep me on the positive track.

    I'll be saying a prayer for you on my end.
    Many gently hugs,
  8. orachel

    orachel New Member

    That is an amazing attitude! Your hopeful attitude may not take away your pain, but it sure helps your journey to wellness to be a bit more bearable and a "worthwhile" time in your life!

    I want to be just like you when I grow up!!! ;)


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