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Literally Born for Osteoporosis.... Warning Long Post

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Victoria ***

Victoria ***

Tue, August 14, 2007

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My quest for destiny with Osteoporosis started when I was born.  My mother could not breast feed me and then it became known that I was allergic to all dairy products....  During the 70's and 80's doctors did not put kids on extra calcium supplementation.  My mother was not good about giving vitamins.... So, I grew up with a calcium deficiency.. I am a very, very petite woman.  4'8 1/4 and weigh 82lbs. On top of this, at the age of 14 I developed severe and painful endometriosis. It was so bad, I was begging for a hysterectomy when I was 18 - 19.

 

It was a miracle when I got pregnant with my daughter... My joy was clouded by the lack of calcium again.  She pulled most of my calcium and my teeth suffered for it.  At the ripe old age of 21, I had a full upper denture.....

 

During the fall when I was 22, I started to Hemorrhage and passing small plate size clots..... the doctor that was seeing at the time told me that it was normal.  I freaked. Being a EMT (Volunteer), I knew the difference between menstrual blood and arterial blood. I contacted the doctor who diagnosed the endometriosis... I lived 80 miles away.  He got me right in and put me on Depo Provera to stop the bleeding. He asked me what I wanted to do.  I told him that I wanted everything to be done... the pain was was killing me, I was a ashen gray color, anemic. Whithin a week, I was in the hospital getting my Hysterectomy and partial oopherectomy. Come to find out, the endometrosis was SOOOO bad, it ripped my uterus free from the ligaments and tore an artery.... It was literally flopping around inside of me.  (I was right about the arterial bleeding) He left one overy with the hopes that it would start to work.....  That was removed several years later.  It never worked, that damage was too severe.

 

After my hysterectomy, I was never told about how important calcium and vitamin D are.  Growing up allergic to milk and dairy, you almost develop a distaste for it.

 

I didn't find out how important it was until it was too late.  My mother was diagnosed with osteoporosis in 1997.  It was then I was really awakened to the dangers of the "No Calcium" zone.  It was a rude awakening.  I started to take calcium but I was tooo late.

 

I started to notice that I was losing my height in 2000.... I would go in for a well check, and notice each time I am a little shorter.  Prior to the osteoporosis, I was 4'11".  I mentioned it to my doctor and he literally blew it off....... That went on for several years, with several different doctors.

 

I lost my bottom teeth in 2004.  Here I am, 31 years old and have a full set of dentures. No great story like "I was in a car accident" or other similar events.... Just plain old lack of calcium........

 

February 2005 my marriage failed. Lost any and all health insurance, made too much money for medicaid but way too little for the medications that I needed. Something had to go, I had to keep a roof over my head, gas in the car to get to work, pay all of the rest of the bills..... Spouse won primary residence of our daughter. Now I am paying 68.00 per week child support......  Weekly child support took over half of my pay check.  I lived 45 miles away, took a lot gas (and money) to go get my daughter for a visit. (he refused to even help out, if I wanted to see her, I have to go get her and bring her home!) Spouse only cared about him and what he thought was due to him...... Food was scarce during this dark, dark time......  So, that is the way the cookie crumbled. I lost a ton of weight due to the struggle of trying to just keep my head above water...... It is amazing, the affects of stress to your body.

8/15/07 12:19am

Hello, Victoria. Thanks for writing. I'm glad you found us.

 

Your bone health history is certainly extensive and challenging. Your situation, as you know, seems quite concerning.

 

To help, I'd like to offer a few resources:

 

People Who Are Living With Osteoporosis

http://www.healthcentral.com/osteoporosis/c/role/1/

Here you'll find posts from people who can relate to some of the same issues you're facing

 

Why Your Bone Density Might Not Improve, Even If You're Taking an Osteoporosis Drug

http://www.healthcentral.com/osteoporosis/c/73/12196/lack-bone/

Expert physician Dr. Neil Gonter offers advice about realistic expectations of bone-building drugs

 

After a Fracture: The First 48 Hours

http://www.healthcentral.com/osteoporosis/c/9487/9957/48-hours/

Expert Caregiver Lila de Tantillo talks about important aspects of follow-up care after you experience a fracture

 

Calcium Supplements: To Take or Not To Take?

http://www.healthcentral.com/osteoporosis/c/73/2496/calcium-to/

Again here, Dr. Gonter addresses a common question for people with osteoporosis

 

I hope this information is helpful to you. I can help you find more if you need it. Just let me know.

 

Keep us posted on your progress, Victoria. We look forward to hearing from you again soon.

 

Best to you,

Maria

 

Maria Gifford

Community Moderator

OsteoporosisConnection.com

 

 

 

 

 

8/17/07 2:03pm
Dear Victoria, I am so sorry to hear about all you have endured -- but I am so amazed by your strong and persistent spirit. I truly admire your courage and tenacity and wish you the best as you deal with these complex health issues. You and your daughter are in my thoughts. Warmest regards, Lila
Anonymous
Janice Andleton
8/28/07 4:42pm
Hi Victoria,  I am a 36 year old mother of 3 year old twins. My battle began after I gave birth. I complained of muscle pain in my thighs so I was checked for MS by having an unneeded muscle biopsy. I complained during my pregnancy and was told my pain was from my siatic nerve being pinched due to carrying twins. My twins sucked out all my D and calcium. I couldn't breast feed because I was so vitamin deficiant that I barely produced any milk. I could go on and on but to sum all of this up I finally saw a wonderful arthritis doctor. She x-rayed my hips and found severe osteoarthritis in both hips. I had my first hip replacement in Nov. 2005 and the 2nd in Nov. 2006. I also have fractured discs in my upper and lower back and i'm on a daily Forteo shot. With the first hip replacement I got MRSA and almost died. I had an emergancy surgery that day. The MRSA had tunneled to my butt bone in 2 places. I went home a week later with a pick line for my Vancomycin treatments. I had a 3rd surgery in Dec. 2005 by a plastic surgeon. He used my own skin to do a muscle flap to cover the holes left in my rear end. With the second hip replacement I developed a DVT (blood clot) in my left calf so back to the hospital I went. I went home 3 days later with Lovenox shots and Coumidin. I just recently had a vein study and the clot in gone. I truely understand how you feel. I feel like a human guinea pig because ever since i've been of Forteo i've gained weight that I can't afford to gain. I had gastric Bypass almost 7 years ago and I refuse to have to go through that again or the pain of being fat and feeling constantly judged by society. I could tell you so much more....but i'm thinking about just writing a book, i'm sure you understand what I mean!  So write me back!!!! By the way, I live in Virginia.
Anonymous
Marie
9/12/07 6:33pm

Dearest Victoria...

 I have no answers, as I am a non-medical person.  Your story is horrendous and, as my own mother was also less than sensitive to my needs, I feel so badly for you. There, but for the grace of God, go I.  I can only wish you the best medical care and eventual

healing. And I can and will pray for you.

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