Monday, June 21, 2010

Hiding Beneath My Clothes

I've been told by several people that they had NO IDEA I even had scoliosis--especially not this bad! Yes, I've had this little dark secret most of my life (1/3 of my life anyways). I have always disguised it as much as I could. The worse my curve got, the baggier my clothes got. I tried not to wear any tight fitting clothes that might accentuate my figure. I never have had an "hour glass" figure like most girls. I was straight on one side of my body, similar to a boy's body, and curvy like a girl on the other side. I have never looked right in a dress. Most dresses are tighter fitting and always accentuate a woman's waist. I have never been happy with my waist so I always bought dresses that hid it!
And now, the pain is getting so bad that I can't even wear heals anymore. The way the heals lift my hips and move my spine, just send me over the edge. I tried wearing them 2 weeks ago, when I went to a banquet at Downstream. Even after taking 4 Ibuprofens I still was in unbearable pain! I literally took them off as soon as I got in the car and drove home barefoot.
So if you see me in the next few days, weeks or months, more than likely I will be wearing flip flops, sandals or at least flats!! The days of wearing cute, sparkly, blinged-out heals are over for this girl...at least for now! ;)

Friday, June 18, 2010

So I received a phone call from my local ortho dr yesterday. My dr had been out of town for a few days. She was calling to let me know he was back and he was going to dictate my file and send it off. Once they received the dictation notes they'd fax it to St. Louis so the specialist up there could review my case and decide whether or not he'd take my case.
I asked how long this would take and she told me it usually takes a week and a half to get the dictation notes back!!!
A WEEK AND A HALF???????!!!!! TO DICTATE???!??!?!?!
I cannot believe that in today's world--all the technology available--that we cannot do things faster than that!!!!
So now instead of waiting a few days (like I thought I was going to have to do). I now have to wait at least 2 more weeks!!! That is only to find out if this doctor in St. Louis will see me.
That is so frustrating to me!!!!

On a positive note, I am still receiving phone calls, texts, emails, etc from you all!!! You are so sweet and generous!! I don't even know how to thank you!!
I am so blessed to have friends and family like you!!!
May God bless you for your generosity!!!!

Wednesday, June 16, 2010

Friends in HIGH places!!

I must say that so far, I have received numerous amounts of prayers, words of encouragement and offers to help. Some people have offered to even bathe me and change my bandages!! WOW--what friends!!!! God has truly blessed me with such gracious friends!! Tears of joy roll down my cheeks right now as I write this, just thinking about how wonderful people are. I am almost ashamed that I have not been more loving to others. I have not helped others as much as I could have/should have....
I am just so appreciative of everyone!!! THANK YOU!!!!

Tuesday, June 15, 2010

One Day at a Time

So I created this blog to document my journey. My journey through scoliosis, life, wherever life leads me!!
So here is a bit of history: I was diagnosed with scoliosis at the age of 10. My pediatrician at the time advised my parents to just keep an eye on it and have me examined once a year to see if it progressed. It really didn't too much over the next couple of years. I tried visiting a chiropractor once a week throughout my junior high years. He would adjust me each visit. I don't remember feeling any different after each visit. He did give me a heel lift to put in my left shoe, so that my hips/shoulders/etc APPEARED to be even. Although on the inside, my spine was crooked.
Years went by...I visited a orthopedist in Springfield at one point (probably around the time I was 15 or 16). He didn't really see the need for a brace. He thought I had already gone through puberty and was done growing. He said the only option I really had was surgery. However, at that time it wasn't THAT bad and it was not crucial that I have the surgery. He suggested to my mom that she take me to either St. Louis or Kansas City to a pediatric orthopedist. At the time my Mom was a single mom, with 3 kids and working 3 jobs. She didn't have time to take off work (or the funds to do so). It wasn't a medical necessity at the time so it was not a priority.

So fast forward to 2004. I had just had my son. Since it had been several years, I went to my local orthopedist just to get things checked out. My curve at the time was around 50 degrees.
He suggested I come back in about 5 years and see if the curve had progressed.
In 2009 a local chiropractor held a "Ladies Night" at their office. They offered pedicures, massages, health food and a free spine check. I had my back looked at by the chiropractor that night. He suggested I come in for a consultation.
A few weeks later I visited his office for my free consultation! He and his staff took some xrays of my back and measured my curve to be around 55 degrees.
So within the past 4 years my curve had worsened by 5 degrees. In my book, that is not bad.

Now, fast forward to the present.

I have been having some back pain recently. A few times, after I had sat for a long period of time, or stood for a long time, I'd try to walk or bend and my legs would give out. I'd almost fall. I'd have to catch myself! I tried not to let anyone see me! It was embarrassing, to me!!!
My sister in law had started going to a chiropractor in Springfield, MO. She told me she wasn't like all the others. She didn't "crack and pop" people. She used all natural methods and really encouraged people to change their diets.
I thought it was worth a shot! So I started going to her and I loved her!! She explained to me that my pelvis kept rotating. My upper half was trying to turn to the right and my lower half of my body was trying to turn to the left. So not only had my pelvis rotated but my spine was trying to as well.
So I would go see her about every 4 weeks and she was able to relieve the pain.
In May 2010 she had gone out of the country for a few weeks on a missions trip. I was supposed to have an appointment with her on her very first day back at work--and boy did I need her! I was in some pain! My back hurt!!! It hurt to sit! It hurt to stand! It hurt to lay down!! It was almost impossible to sleep at nights!!
So the day of my appointment her receptionist called and told me the dr was sick and needed to reschedule. It just got me thinking...why am I in so much pain...I wonder if my curve has gotten worse? Maybe I should go see the orthopedist. So I called. Surprisingly they were able to get me in the following week!
So last Thursday--June 10, 2010, I went to see the Dr. They did xrays. He walked into the room and told me curve was now at 65 degrees. WOW! In just one year, (from the time the chiropractor measured the curve to now) it had changed 10 degrees! I was shocked. I think he was too. I know my poor husband sitting over in the corner was!!!
The doctor told me my only option was surgery. He said if I did not have the surgery, soon, it would eventually crush my lungs and my heart.
I'm not sure if he was the first to mention it, or if I asked first, but he was quick to say that he only does about 6 of these surgeries a year and that I would not hurt his feelings if I went to either Dallas or St. Louis to a surgeon who does 6 of these types of surgeries a week!!
He went on to explain that this is a very serious surgery. Although they do insert 2 rods and many screws into the spine, because my curve is so severe it would be impossible for them to ever get it completely straight. I'd be lucky to have a 30 degree curve.
He also explained that I'd have to stay in the hospital for probably a week (2 to 4 of those days in ICU) and that my recovery would take months. I'd need a person to stay with me and take care of just me for the first 4 weeks.
Now, I am a Mom of 2, so my first thought was WHO IS GOING TO TAKE CARE OF MY KIDS!?!?!? We're not talking about staying the night over at Nana's house for the weekend. We're talking about WEEKS...maybe MONTHS!?
And WHO would take care of ME?! My husband can't take 4 weeks off straight! My Mom still works and she cannot take 4 weeks straight off either!!
If my Grandma takes care of my kids, then she can't take care of me too! My sister is in school. My other sister works full time and cannot take time off.
Not to mention, I am PTF President! I cannot let the school down!
So right away all these different scenerios started running through my head. If I have the surgery in December, I will be done with my main "job" as the PTF president at the school. My kids will be on Christmas break and no one will have to drive them to and from school.
I was OVERWHELMED!!!!! WAY TOO MUCH TO PROCESS!!!!
I went home that night and just felt emotionally drained!!! I could not sleep that night...
I looked up my insurance benefits to find out that IF I chose a dr/hospital IN network it was still going to cost us almost $6,000!!!! I don't have $6,000 just lying around!!
So as stressed as I was, I pulled it all together and have been managing to function as normally as I possibly can right now. I'm still taking the kids to swim lessons, golf practice, the library, etc. I am still attending my meetings, haircuts, lunch dates and those sorts of things that we stay at home moms do all day. And yes, I am even managing to keep the laundry caught up, the floors vacuumed and the toilets clean! I threw a FABULOUS "cat-themed" birthday party for my 3 year old last weekend! I am getting through it all...One Day at a Time!

Yesterday I called and made an appointment at the Baylor Scoliosis Center in Plano, TX. They cannot get me in until August 25th. :(
I also called the dr in St Louis that the local ortho dr referred me to and was told that this dr only takes severe cases. They would need to see my xray and my doctor's notes before they'd even schedule me an appointment. So that is where I am now. Waiting to hear back from the office in St. Louis.
It's all a waiting game.....and I am just taking it ONE DAY AT A TIME!!