Thursday, February 12, 2009

Major Life Changes - Tammy's Story

Hello everyone! Most of you that are on facebook know why I have not blogged in a long time. Some of you however, may not know. I suggest that you sit down if you are not already sitting. To make a very long dreary story short, on March 13th I will be the proud (right?) owner of a new 2009 titanium hip. Unfortunately it only comes in one color and to get it i will have a 6 to 8 inch slice along my leg. But don't worry, the doc says I'll be walking again in no time!!! LOLOLOL

Quick side story...I have a favorite pharmacist that we've known for two and a half years. He's a great guy, he really knows his patients very well and cares tremendously. Well, yesterday Dustin went to get some new prescription filled for me and the guy asked Dustin "So will she be able to walk after the surgery?" OK, when I heard this I thought is this really the guy that is making my drugs for me?? LOL! No he really is a nice guy though, but I will be double checking the pills against pictures of the correct pills on the internet from now on.

So when did this all begin? I have known this or something like it would happen because of the way that I sit and crawl. When I was younger, Physical Therapists would say "You know, if you sit like that, you're going to have major hip problems when you're older". I was 5-9 years old when I was hearing this - who cares?! Sitting in "W-Sit" and "Knee Walking" was how I could function the most. I figured I'd be 60+ when my hip went out. A couple of years ago, I began having a difficult time - post kids - with my hip. It wasn't anything too severe, just a little bit achy. I noticed it especially when I tried to crawl stairs at friend's houses. It gradually worsened and this past Summer, I stopped being able to do the machines at the gym. December, it was straight down hill. The pain is really astonishing.

Last April I tried to get my Boulder PCP to help me, it was the first time I ever really sought help for pain. Basically I was disregarded after no major findings were determined by a basic X-ray. What I needed was an MRI, but the doc was not concerned and did not order one. So this past September I went to a different doc in Boulder - same practice - and it took three and a half months to get the MRI that I needed. In the mean time I would crawl and my hip would give out and I'd fall over in agony. My doctor's office could not seem to get the MRI results. In fact, I went to her one visit for the sole purpose of getting the results. And she made up excuse after excuse as to why she could not get it.

On January 8th I fell over and could not move my leg for quite some time. The pain was just unbelievable. I thought I broke my hip. Dustin once again called the doc and left an angry message on her machine to get back to us. The next day he decided to just call the MRI department and find out why we couldn't get the results. It turned out all we had to do was ask for them, which my doctor never did. The results were faxed directly to us within 20 minutes of the call. Words like "tear" "displaysia" "detachment" "cysts" and "osteoarthrosis" seemed to fill up the entire page. Now picture it...we were here in our living room reading all this stuff. We had no idea what a lot of it means. Dustin called my doctor and left a very brash message saying that we indeed got the results on our own and the least she could do is go over them with us. Its been one month since that day and we have not heard a word from them. That afternoon Dustin and I had decided we needed to find a higher power. We managed to get a sick visit at a clinic through the University of Colorado in Denver. During that appointment we heard the words Hip Replacement for the first time.

We are bitter because if I would have received proper care from the Boulder health system I would already have a new hip and the pain would have never had gotten this severe. If there is one good thing to come out of this whole disaster its that we have finally found quality health care for both myself and the children. Unfortunately its all in Denver. I have a great doctor now! I have a great orthopedic surgeon now! And I feel better about my longevity! The kids are now in the Children's Hospital system after some major blunders by Boulder's ER. They have a wonderful pediatrician now.

When I go to these new doctors and compare them to what we have been dealing with for the past two and a half years it actually scares me! People like me and my family who are on Medicaid can get such poor treatment from the broken system. Many people on Medicaid would not have the choice to go to Denver for medical care. We are fortunate to have the resources necessary to travel. Even sadder is the fact that in the past three weeks we have come to find so many parents that are in the same boat that take their kids 25 minutes away to the Children's Urgent Care North Campus rather than 5 minutes to the Boulder Hospital ER. I should mention here that Destiny had a couple seizures two weeks ago and Boulder ER overdosed her and misinformed us. Luckily, Dustin initiated taking Destiny to Children's 6 days later and she is now recovered.

I have not crawled since January 9th and I will never crawl again. This is probably the biggest life-style change I have ever gone through even more so than becoming a mother. For those of you that know me in my home-life you entire world has been on the ground, all my life. Its depressing. The first week after learning that my only option is definitely total hip replacement was really tough on me and on Dustin. It didn't help that I was taking Valium as a muscle relaxant, but it is actually a depressant. Since then I have been reaching out. I found a very supportive "Hippy Support Group" and have been communicating with a lot of various people. One of the most difficult things for me in the beginning was that I thought that only older people (70+ - no offense!) had hip replacements. Well I found many many many young people that I can relate to that have gone through THR! This has been an awesome boost for me. I mean OK, I'm sorry that they're also having this happen to them, but its nice to know about it.

Soooooooooooooo we have a lot of work to do. Not only to prepare for major surgery and home rehab, but we need a new house! Right now my attendants and Dustin are pushing me around my house in my manual chair. Just another strike against my independence. Its hard on them and me. We moved our bedroom from the garage to the guest room. We have a king + sized tempurpedic adjustable bed that takes up most of our bedroom. It is a cute little bedroom. I lay in bed and I see a huge a tree out my window, but it is really small. I want my independence, whatever that will mean living my home life in a chair. It will all come it's just going to take some time. But patients is not one of my virtues. We are looking for a place that can house live-in attendants too. So that's exciting!

Many of you know that I type sitting on the floor. Well, that's over. Right now I can't type. However, in a couple weeks I will be getting an AT (Assistive Technology) evaluation and I will be geared up with some high tech equipment that will enable me to once again use the computer independently. Several people have suggested Naturally Speaking. Let the record show that Naturally Speaking doesn't speak CP!!! Check out this is the more probable rout I will be taking.

I am leaving my pictures and graphics out of this email because right now I don't feel like teaching my wonderful typist how to insert those things. But I promise my next blog will be focused on the kids and their activities and it will be filled with pictures! Look for it next week ; )

This is where I will close...I miss you all!!! I'm sending my love your way and please send best wishes our way.

Oh and by the way, Boulder Colorado still rocks! We love this place! We only hate the medical care - that's all. Oh good news flash! Benny was accepted into the only Charter School in Boulder. Its a kids motivated school, K - 8. We are very excited about this!

Love you all,


Elisa M said...

Thanks for the update! You and your beautiful family are in my prayers.

Dustin said...

So far, our experiences at both The Childrens Hospital and The University of Colorado Hospital , have been wonderful. It makes me disgusted with Boulder Community Hospital and Medical care in Boulder. Tammy's new Doctors and even the Pediatricians for the kids, talk directly to Tammy herself rather than through me. And we see other people using wheelchairs when we visit the Denver hospitals. It seems the Boulder Bubble has Burst!
Tammy's Surgeon's Assistant has been communicating w/ her via email and Tammy's Surgeon himself gave us a call at home to discuss a concern we had when we learned he had chosen to use a ceramic rather than Titanium metal on metal hip. He explained why he had chosen and preferred ceramic but ultimately allowed Tammy to upgrade to Titanium. Living in Boulder, we have recently discovered a whole new meaning to the term "Hippy" !

Holly G said...

tammy! darn it--you move to boulder and become a complete hippy :). i really do hope that you're doing alright, though. take care. love --holly

Sharps said...

I am sorry to hear that you are going though some majorly stressful life changes. Hopefully through proper care you can have a better life and be pain free!!! HOPE you are doing well...while I read your story I was thinking..."EXTREME home makeover?" WHY dont you give it a try! DO YOU ever watch that show. They do so much to promote dependence....I LOVE IT!

Niffer said...

Wow! Lots of stuff going on with you! Hugs!

Anonymous said...

This will all work out!!! Things always work out...and with your diligence they will work out great. Yes, Boulder is thought of as a hippy town...but as usual Tammy, you give a whole new meaning and perspective. Now I love hippies even more! Love you, Love Boulder!
Peace and Hugs-

Anonymous said...

Hi Tammy. I am not sure how else to make contact with you, so I'll try this. We all hear about how we each have a twin somewhere in this world. Well, one day, I came across a photo of you and your hubby on your blogspot and nearly fell off my chair. Not only are you MY twin, but he is my hubby's twin as well! If you are interested, I'll send you copies of your photo side by side with mine so you can see what I mean. Feel free to write to me at Small world, eh? (Yes, I'm a Canadian,eh!) - Pat