Monday, January 18, 2010

It Isn't easy being a Hip Chick....

BUT having my other Hip Chicks support makes it easier!! :)
I don't even know where to begin . . . So much has happened to me medically in the last 3-4 years. So I guess I'll just start from the beginning..... but I must warn you.... I type as how I would talk...... and when I talk, I tend to ramble.... soooo..... I'll try and stay in order ;)

So for as long as I can remember I have had issues with my hips/legs ...... but only off and on, and only when I walked around for hours at a time.... I remember going to Florida with my family for my nieces cheer competition years ago..... but the sad thing is..... that I don't remember much of the competition and much or our stay there besides the day that we went to an amusement park there and by the end of the day I was limping and crying in pain ...... Fast forward a year and I'm having problems with my right knee ..... off to physical therapy I go.... Lots of physical therapy and shock therapy to my knee ( something in my knee wasn't working ) and I'm all better.... for awhile that is........ The one thing I remember from therapy was my therapist asking me if I had been put in braces when I was little...... huh?? wait....what? WHY would I have been? Should I have been?? Apparently he thought my legs were a little crooked ....... I had no idea what Dysplasia was at the time....... so in one ear and out the other that tid bit of information went.......... Fast forward another year and there I am joining a Boxing Club ..... oh yes... boxing ...... It's an AMAZING stress relief.... and apparently I stress a lot according to the stomach ulcer I had when I was 12. My friend Roena and I were there EVERY day after work... taking about two classes a day.... we were pretty hard core about it ..... Monday - Friday...... after awhile we started doing some running ...... I have always LOVED running..... but I was never very good at it... never very fast and my legs have always been so weak.... but still.... I loved it... and I was determined to keep working at it....... and then one day...... as we were upstairs stretching and getting ready to go on our run...... my friend looked down and informed me that my ankles were hanging over my shoes...... my what was what??? Yeah... my ankles and all the way up to my calves were so swollen that it was hanging over my shoes....... What the heck was going on?? It didn't hurt, I hadn't fallen and hurt anything, I couldn't understand why I was swollen........ but I decided that it was probably just best to skip the run and the workout and go home and put my feet up for the night....
my legs were still swollen a week later..... so I went to the doctors.... at the time I had Kaiser...... and the "diagnosis" that I got was that I sprained my ankle...... " But they don't hurt" .... " Well it's just a sprain... the swelling will go down soon " ...... "WHAT?? are you kidding me?? I sprained BOTH of my ankles and I didn't know it? Really? I either fell or twisted BOTH of my ankles without knowing and without it hurting?" ........ yeah ok .... that was the FIRST of many useless "diagnoses" that I have gotten within these last few years........ Nobody could tell me what the swelling was from ...... they checked my heart, they checked my veins, they ran every test imaginable on my blood and nothing..... so i figured I would just deal with it.... it didn't hurt so I was ok....... the swelling went on for a year.... they would stay swollen for months at a time with maybe a week in between of being "normal" ........ and then one day... poof........ the swelling was gone...... never to return again...... SWEET! BUT as soon as the swelling disappeared........ then came the pain...... At this time I had switched my medical coverage to Sharp...... so back to the doctor I go....... xray after xray .... blood test after blood test.... nothing... so off to an Orthopedic Surgeon I go........ "nothing is wrong with you" .... so back to Boxing I go....... more pain.... so off to the Rheumatologist I go........ more xrays, a bone scan, more tests... blah blah blah....... they can't find anything "wrong" ........BUT my blood work did come back as Suggestive of Crohns Disease....... so off to the Gastroenterologist I go..... a Colonoscopy, Endoscopy, and Capsule endoscopy later....... "nothing" so they throw me in the "IBS" pool....... so back to the Rheumatologist I go...... still "nothing" .... so i get thrown in the "Fibromyalgia" pool ......... NOT buying it..... but completely frustrated with all the doctors and tests and CRAP that I decided to stop trying...... I have a relatively high pain tolerance so I can just deal with it right? Just learn to live with it....... WRONG! just dealing with it made me depressed..... being in pain every single day of your life gets old...... and frustrating..... and when NOBODY really understands and NONE of the doctors can find out why you are in pain, it starts getting to your head........ you start thinking that maybe it's all in your head...... maybe you're just being a baby.... Months and months go by with me sinking further and further into my depression ........ so much to the point that I am currently on Depression/Anxiety medication....... which helps... but the pain is still there........ The pain finally got to be to much for me, that back to the doctors I went about three months ago....... and I FINALLY found somebody who can tell me whats "wrong" with me.......... I have mild bilateral acetabular hip dysplasia ...... basically my hip sockets are shallow...... the acetabulum doesn't cover the femoral head sufficiently... which makes the hip unstable..... without surgical intervention, over the years, as the femoral head and acetabulum move without correct alignment, the cartilage in the joint wears down prematurely and unevenly. The result is differing degrees of osteoarthritis, depending on the severity of the misalignment. The osteoarthritis can occur on the joint head or in the socket itself, and eventually the need for a Total Hip Replacement........ There is a relatively new procedure called a PAO.......What is a PAO? Periacetabular Osteotomy. The mother of all hip surgeries. A procedure that cuts the hip socket out of the pelvis to allow the the socket to be repositioned and then screwed back into place. This allows the ball & socket to move fluidly, preventing cartilage damage and preserving the joint in patients with faulty hips. The PAO preserves & enhances the patient's own hip, not replacing it with artificial parts like a hip replacement. Why not a hip replacement? Although the recovery is said to be easier with a hip replacement, they are not ideal for younger people as they need to be revised frequently, leading to a possible 7+ additional surgeries for someone my age. Also, active people generally can not resume their higher level of activity............... Fortunately for me, one of the well known PAO Surgeons is in San Diego....... unfortunately he is not on my medical plan...... SOOOOO I was of course denied authorization to see him....... I am currently going through an appeals process with them and I should know the results within 30 days..... SO in the meantime...... here I am...... just pluggin along...... I have created a Network/Support group called Hip Chicks........ and that is keeping me busy.... I have met a lot of new friends and have gotten some great support..... while also being able to help other people connect and support each other, and its a great feeling!!!

So there you have it....... that's my story..... and im stickin to it..... haha, just kidding........ but really.... there you have it........ I will keep updating here as more things happen..... as soon as I get the results from my appeal, you guys will know :) Send your good thoughts and well wishes my way because I need them .... Talk to you guys soon ;)

2 comments:

  1. Many good wishes your way, Krystal! You know I love ya and hope that your appeals process gets done quickly! What a waste of time and resources when you know it's eventually gonna happen, huh? Your ankle swelling is crazy! And thanks for bringing us all together on this site:)

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  2. I feel your pain. I remember hurting back when I was in high school and I am now 28. I have lived everyday with on and off pain. But I must admit that when the hips or which I thought was my legs, hurt they hurt BAD. I am seeking a second opinion and see who I can feel the most comfortable to do the surgery. I hate feeling gimpy. I just want to feel normal. And like you I am tired of hurting and my hips feeling like they are giving out. I have taken Advil and Tylenol as needed and will only take them when the I hurt BAD. And bad for me is when my right foot will turn in. Which there for awhile it could hurt for up to week and then not hurt for months. Well as life goes, my left hip has just now started to bother and do that wierd giving out feeling and start hurting just like my right. All I can say is that the hips need to behave I am working as fast as I can. So I hear you all to well with everything. And best of luck with your insurance.
    I love the new site!

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