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Thread: How to you keep it together?

  1. #1
    Join Date
    Apr 2006
    Posts
    109

    How to you keep it together?

    I am 28 and have had a HOST of medical problems. I have OCD, ADHD, Severe Depression (all of which I have been medicated for since age 9), hypertension (dx at age 13), hypothyroid (dx at age 11-my thyroid makes almost NO hormone and I am on a mega dose of synthetic hormone), colonic inertia (had total colectomy -entire large intesting removed- in 2004), scoliosis that is worsening, double pulmonary embolisms in both lungs (was rushed to ER and am now on coumadin and doing okay) etc. I have had no luck with my body and I just feel like my body has failed me in every way possible. It frustrates me to NO END--I eat right, excercise, don't smoke, not a big drinker...yet I am the one out of all my friends with all these problems. I have horrible luck...even my therapist admits that I have "sh1t luck." Whenever I WALK INTO the doctor's office I immediately start crying...I expect the worst news because that is what I always receive. I am seeing a surgeon on Friday and I really, really would like to go to the doctor and not fall apart. I start to get nauseous whenever I enter the hospital...I start shaking and immediately begin to cry. On top of all this I lost my mother in July. I was 27 and she had just turned 60. These past few years have been hell for me and I am really trying hard to keep it together. I just want this scoliosis krap behind me. If I need surgery I want to have it...and get this behind me. I take more medication than my 87 year old grandmother. I just had to vent to people who understand....
    28 years old. Dx at age 14.

    1994 20T/20L
    1998 22T/20L
    2002 30T/28L
    2006 34T/28L
    2008 43T/34L

    considering surgery in the near future as the curvature is getting progressively worse and for pain management.

    XRAYS and pics at 28 years old. http://www.freewebs.com/skiergirl24/apps/photos/

  2. #2
    Join Date
    Aug 2007
    Location
    Auckland, New Zealand
    Posts
    185
    Hi Mobee,
    The short answer is, not everyone does keep it together. I think most people here have experienced the ups and downs that come with having health problems. I can relate to feeling like an old person, and it's a really lonely feeling. I go to the gym and see grannies who look like they are doing fine, and I feel that it's not fair that I'm 28 and it is hard nearly every day. I lost friends through their lack of support (wasn't expecting much, just the odd phone call while I was sick). I'm glad that you are seeing a therapist, because OCD, depression, and ADHD are really treatable. I imagine that when you have had OCD and depression treated your quality of life will be better, and it will be easier to cope with the stuff that's going on in your life. I don't want to minimise your experiences, because I can see that you have been having a difficult time and probably are coping better than a lot of people would.

    The way I cope, is to change my perspective. I'm never going to be normal, but I can do my best to keep fit (like you do) and enjoy the good times that I have instead of focusing on what I miss out on. It's the hand that I've been dealt, and all I can do is work towards making it better. The forum is an excellent place for venting, and you'll see that everyone does it! It's a tough road, and ability to cope comes and goes.
    1994 curve at age 13, 70 degrees, untreated
    2000 Anterior fusion with instrumentation T9-L2, corrected to 36 degrees, 14 degree angle between fused and un-fused thoracic spine.
    2007 26 degrees junctional scoliosis
    Revision surgery, 6th December 2007 T4 to L3, Posterior approach.
    msandham.blogspot.com

  3. #3
    Join Date
    Mar 2008
    Location
    New Bern, NC
    Posts
    1,445

    loves to skate

    Hi Mobee,
    As my son has a habit of saying, "Life sucks and then you die". Not very uplifting but sometimes I feel myself agreeing with him. I used to get very nervous when I would go to see a Doctor, but life has taught me that Doctors are human beings just like you and me. Their area of expertise is just different than ours. Just try to remember that when you go to see the Doctor. Also have all of your questions written down so that you won't forget anything. Also, try to remember that good Doctors are our friends and are there to help us.
    Didn't I see a post by you where you went to see or were going to see Dr. Rand at NE Baptist hospital? Did you see him and what did he say to you? I found him to be a very kind and compassionate man. He was extremely easy to talk to and gave me his undivided attention.
    Diagnosed with severe lumbar scoliosis at age 65.
    Posterior Fusion L2-S1 on 12/4/2007. age 67
    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
    New England Baptist Hospital, Boston, MA
    Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

  4. #4
    Join Date
    Apr 2006
    Posts
    109
    Thanks ladies. I hate to be a downer. I try to keep a positive attitude and focus on the things that are going RIGHT with my life. yes, I am in therapy and on meds and will be for life. If ther is one thing I recognize it is my limitations...I need therapy and anti-anxiety drugs to manage my ocd and depression. And yes, I am seeing Dr. Rand...in May. I see another scoli doc on Friday! So I am super nervous about it and do noit want to break down and cry...like I tend to do !! Anyway thanks for the kind words!

    28 years old. Dx at age 14.

    1994 20T/20L
    1998 22T/20L
    2002 30T/28L
    2006 34T/28L
    2008 43T/34L

    considering surgery in the near future as the curvature is getting progressively worse and for pain management.

    XRAYS and pics at 28 years old. http://www.freewebs.com/skiergirl24/apps/photos/

  5. #5
    Join Date
    Feb 2007
    Location
    Boston area
    Posts
    120
    Dear Mobee,

    I think we are all anxious about meeting with surgeons and do our best to hold our emotions in check so we can gather as much information as possible in the time alloted. A tool that I have found helpful is to write out my questions/concerns to bring to my appointment. I also make a copy for the md and give it to him/her so we can stay on track. If the appointment time is running short, it helps to prioritize your list so the most important questions/concerns are addressed first. It also save time for the md because he/she knows your concerns and can focus on listening to you.

    Good luck with your appointment on Friday and with your upcoming appointment with Dr. Rand. I thank God everyday for Dr. Rand and his exceptional talent. As "Loves to Skate" already mentioned, Dr. Rand is kind, compassionate and a good listener. I also found him to be very conservative in his approach -- something I appreciated.

    Good Luck,
    Linda W.
    Linda
    Two-stage A/P fusion T6-S1 with lumbar implants June 12 & June 27, 2007 at age 57
    S curve 75+ degrees with kyphosis
    Now 45 degrees and standing 3 inches taller!
    Dr. Frank Rand, New England Baptist Hospital, Boston

  6. #6
    Join Date
    Jan 2008
    Posts
    111
    Dear Mobee,

    If you do find yourself crying during your doctor's appt., don't worry about it. I found myself crying at an appt. many years ago with a renowned scoliosis surgeon. He was very sensitive and caring and seemed to understand. He asked me why I was crying, and I told him it was because I was depressed. It didn't make any difference. Crying is healing and helps relieve the built up tension of unexpressed emotion. So, try not to worry and good luck on your appointments.

  7. #7
    Join Date
    Apr 2006
    Posts
    109
    Thanks everyone. My mom's friend is coming with me...her daughter is about my age and had surgery with Dr. Rand. She thinks very highly of him. I know everythign will work out in the end..I jsut hate being in limbo!
    28 years old. Dx at age 14.

    1994 20T/20L
    1998 22T/20L
    2002 30T/28L
    2006 34T/28L
    2008 43T/34L

    considering surgery in the near future as the curvature is getting progressively worse and for pain management.

    XRAYS and pics at 28 years old. http://www.freewebs.com/skiergirl24/apps/photos/

  8. #8
    Join Date
    May 2005
    Location
    Wheeling, WV
    Posts
    1,105
    Hi Mobee,

    I don't think anyone, including your doctor, would deny you your emotions!!!

    My hope is that you don't deny your ambitions!!!! You are worthy. Don't give up, don't give in, just do what you can. You are not alone in what you are going through.

    Shari

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