Tuesday, February 17, 2009

It's been a long while.....

Well, on the moving front we will be leaving to WONDERFUL Sioux Falls, SD in one week! So packing has been taking a toll on my body!!

The morphine pump doesn't seem to be working as much as we hoped it would. I still have tremendous amounts of pain. However, they are still increasing the amount of morphine each week, so we'll just have to have patience. I am looking for a pain doctor in SD, but we are finding out that a lot of doctor's don't want to take a patient who has had one installed from another doctor.

Just wanted to give you a quick update. I will write more after our 'ROAD TRIP' and let you know how it went!!

Hope everyone is happy and healthy!

Sunday, January 4, 2009

Pump Implant is in!!

On Tuesday, December 30, 2008, I got the morphine pump installed and is up and running. Although it seems to work pretty well, it brought my pain level down to a 4-5, although I still have some flare-ups. Yesterday Mom and I went to a couple stores and I just used my walker. So, today I am feeling it! But, the good news is, I walked in Target (with walker..I used to have to use the wheelchair) for the first time in along time.

This next week is filled with Dr. appt.'s to make sure everything is running right and hopefully up the dose of the morphine so I can ween off some of the pills.

The holidays were great...not too much went on.

Still not sure when the moving date back to Sioux Falls is, but it is going too fast for me...I like the weather down here much better!!! ...Sioux Falls temp right now is -6 and in Sunrise, FL it is 77, with a high of 80!!

Hope everyone is having a happy and healthy new year!


Thursday, December 25, 2008


I hope you all are having a good holiday season so far!

Finally an update....

A couple weeks ago, I did the trial for the morphine pump, which brought my pain level from a 10 to around a 4 to a 5. I still had a few flare up's. I decided since that was a success in my book, that I will have one put in permanently next Tuesday, December 30th. The doctor showed us what the device would look like....and it was the size of a hockey puck and will be put just inside my skin and will be located right around my hip area. There is a catheter that will go from the device to my spine where the medicine will go directly into my spinal fluid. Every two to three months, I will have to go back to the doctor's office to refill the device. They will insert a needle threw my skin into the device to be filled (like an ink cartridge!). The device will eventually need to be replaced in about 5 to 6 years.

Also, something coming up in the near future to move back to Sioux Falls, SD where we are originally from. It will be quite a change from the nice weather we have here in Florida. But, this could place anywhere from 2 months to 5 months..depending on alot of things...which will give me time to get adjusted to the morphine pump.

Well, that's it for now....
We hope you all have a safe and Happy New Year!!
~Rebecca~...and mom!!

Friday, October 17, 2008

Quick update...

Hi everybody!

As you see in the picture below, things have not been too fun around here! The RSD has spread to pretty much full body.

We went to the Dr. Patin in Miami (who did the ketamine) and his first response was that I am a very, very sick girl and that the disease is in it's later stages and he's never seen anybody this far advanced. He said that he no longer knows what else to do with me except to go to either Dr. Kirkpatrick in Tampa or a doctor in Philadelphia. Well, since Tampa is closer...we decided to make an appointment with him. Dr. Patin also stated that he will contact Dr. Kirkpatrick and discuss my case with him and help as much as possible.

We did get an appointment with Dr. Kirkpatrick on November 4, 2008! He does alot of ketamine treatments....but..... since I had such a bad experience with my low-dose drip, I am going over there with an open mind and listen to what he has to say.

We will update you after we get back from Tampa!!


Monday, October 6, 2008

Rebecca's feet are a little swollen!!!!

This is how Rebecca's feet/legs are! She elevates them as much as she can. It's very painful to walk around like that!!!

She has a doctor appointment next Monday, October 13th, in Miami to talk to the doctor regarding the spinal cord stimulator. We will update it as soon as we find out what's next!



Sunday, October 5, 2008

Sunday, October 5, 2008

Hello to all!!

I just want to thank everyone again for their support, it really helps me get through all the hard times!! So, please continue to keep all the emails coming (even if they are to my mom..lol!)!!

Not too much has been going on here except for my feet are swelling and I actually now have kankles. The swelling is from my knees down to my toes, in both legs, and also my right arm from my elbow to my shoulder (random, I know!).

I have decided to go with the spinal cord stimulator, since I have tried alot of the other options, including the most recently approved medical procedures. I am just waiting to hear from the doctor to see how soon they can put it in and then I will update my blog then.

Until next time.....


Sunday, August 31, 2008

Sorry we haven't written in awhile!

Trust me, ALOT has been going on!

First of all, I want to thank everyone for all the emails (to my mom!) and for the continued thoughts and prayers. They mean more to mean than you know!!

A few weeks ago I got approved for Social Security which is great being I'm so young and they never really seem to approve younger people and that I did get it so fast. However, the downfall is I won't received any "real help" from them until April 1, 2010 when I will received Medicare. To receive Medicare you have to be in the applying process of Social Security for two years so until then I will be paying COBRA. And, so since I was approved so fast, I have to wait the full two years.

So here's the down low on what's going on with my RSD. Unfortunately, lately it's been a living hell. First, I saw a doctor down in Miami - University of Miami - Jackson and he was willing to do the low-dose ketamine drip. Basically, this drip is almost equivalent to a horse tranquilizer. They have only done it to one other patient but, he only had RSD in one leg and it worked great for him. The low-dose ketamine drip is supposedly one of the last options a person with RSD tries and it should help with the pain somewhat. Then there are patients who go on to do a five day ketamine coma, which they only do in Germany and Mexico and it costs at least $40,000 and insurance doesn't cover it.

Here's my experience with the low-dose ketamine drip which was done August 26th. Beforehand, everyone was a little excited and hopeful that this was going to help my pain somewhat. We got up bright and early and drove to the hospital in Miami and surprisingly there were nurses waiting upfront for us...and she escorted us straight back to the recovery area where the procedure was done. We were the only one's in the room and all attention was on me. I was able to take a velum since I was very nervous and they put some numbing cream where they thought certain veins would work for the i.v. Since we had gotten up so early that morning and didn't get much sleep the night before, I was very very tired. I ended up falling asleep at this point. There were about three doctors in there all the time along with a couple nurses (one being Asian - remember this part for later). Since I had been sleeping for about an hour the doctor told my mom and Craig to go downstairs for a bit to eat since it will be awhile. While they were gone, I had a bad hallucination which I felt like my body was awake but my mind was somewhere else. When I looked up at the doctors I had been crying and I had no idea where I was...they kept asking me where I thought I was and I kept saying in a China and I didn't want to be in China anymore and I wasn't making any since at all. At one point I said I was in Africa and I basically couldn't fully wake up. Around this point, mom and Craig came back and saw the curtain around me and the doctors and nurses all around me. Then I looked at my mom and I realized that it was okay....so, I kept saying okay and finally started coming out of it. So, after everything was fine, they were all wondering why I thought I was in China..they thought for sure it was because I watched Olympics and so I just went with that...but, actually it was of the Asian nurse as I stated earlier! About 5 minutes later my legs began to hurt and that is when I knew the drip didn't help at all. The doctor recommend I do a second one in a week or two and increase this certain amount of drug they give you beforehand so you have pleasant dreams. Since I'm taking so many medications they figured out that I would need more than the usual RSD patient would need. So, the whole night I didn't sleep well and my legs kept hurting me. Mom got up around 5:30am and to her surprise I had already been up and in sooo much more pain then ever before. Mom tried calling the doctor and left messages and to this day he still hasn't returned any of her 5 messages! We ended up going to my Pain Management doctor and told him about the situation and he was pretty surprised that it didn't help at all. He thinks we should go to Philadelphia to see the RSD Guru. We did call up there at one time and there is a two year waiting list! My doctor was very sympathetic and increased my meds and we are now thinking of having the Spinal Cord Stimulator implanted eventually.

So, there ya have it....not the great news we wanted to share...but, just thought we better keep you all updated....good or bad. We will try to updated this more often.

Thanks again!