HAPPY HOLIDAYS!!!

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!!

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!!

~Rebecca~

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!

Thanks!

Jan

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.....

~Rebecca~

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!
~Rebecca~

June 10, 2008

Hi everyone!



This is Jan..(mom!) I just thought I would update Rebecca's blog for her. Unfortunately, the RSD has spread to all four limbs and she has a hard time writing and using the computer. She is still in a tremendous amount of pain!



We did go to her new doctor June 2nd and he did a different kind of block where he put some medicine on two Q-Tips about 6" long and had her lay down and put her head back as far as she could and he put the Q-Tips in each nostril and it was suppose to go to the nerves in the back of her head and give her some kind of relief. She had them in for about a total of 20 minutes and it didn't even give her a few minutes of relief. So, it was disappointing..but, he thought she should come back on June 9th (yesterday) to try it again, but she decided against it and the doctor even agreed since it didn't do anything for her the first time..so, why go through that again?!!. Sunday she noticed that she was feeling "different" inside of her. Her chest was hurting and her pelvis and back was hurting. She had a fever, which went up to 101 then down to 99..and kept doing that for a couple hours or so. We informed the doctor and asked if the RSD could go inside her body and he said that maybe it was the flu (which we kept telling ourselves that on Sunday!) but she didn't feel sick at all...just different..like the RSD feeling she has. He took her temp, normal, then he took her blood pressure and it was 90/60, low, then he looked a little concerned and said that we'll have to "look outside the box"..wasn't sure what he meant by that! But, then he said that she needs to go to a teaching/research hospital and referred us to University of Miami - Jackson. So, she has an appointment there July 2nd. The date seems so far away...but, I can call everyday to see if there are any cancellations.



Just to let you know that she doesn't check her cell phone or go on her e-mail anymore. You can go ahead and e-mail her..but, just to let you know, I print them out for her to read...so, be careful what you talk about..hahaha... So, please go ahead and type in her blog...or e-mail her or myself at jangausmail@hotmail.com and please keep in touch!!



Also, thank you very much for all your support and prayers....you don't realize how much it really means to us!!!!



Jan

XOXO

May 18, 2008

Sorry I haven't updated my blog for awhile! I have changed to the new doctor who is so much better than the previous one...and I've only seen him once! My next appointment with him is June 2nd and we will be discussing more of my meds/options then. I also have started taking a water pill, which has reduced alot of the swelling in my feet!

Recently, I was in the hospital thinking I would get alot of intense therapy for my depression, however, it was more of a detox center. So, needless to say I am back at home. According to my insurance company, I was there too long and could not transfer to a different and more recommended hospital. It's a great possibility that I will be going to that other hospital after my Aunt Linda visits and after my June 2nd appointment.

Thanks again for all your thoughts, prayers and messages...they mean ALOT to me!!
~Rebecca~

Going to see a new Dr.

Well things haven't been going well with my last Dr. to say the least. I called in because I was in so much pain (and that is what they say to do) and I got the generic answer that I should go in for another block; not sure why the 6th one would work? So the next day mom and I went into pick up my prescriptions and she had taken away one of my pain meds and decreased all of the others; without an explanation! I couldn't believe a Dr. could have such bad bed side manner.
So on Thursday I will be seeing a new Dr. who is supposedly very good. He was referred to me by someone in the RSD group.

Other than that not much has been going on besides the fact that the RSD has spread to my right arm (between my wrist and elbow) and yes it is hurting bad now haha......It is still hard everyday to wake up and not do much it has almost been 7 months since I stopped working but it feels like yesterday. It is just really hard to see a future; will I be that person living with their parents when they are 35?? Hope not...haha

Guess we'll have to see what the new Dr. has to say.
I'll let you know.
Thanks again for all the support!
~Rebecca~

RSD Conference in Tampa

RSD Conference in Tampa This last weekend, Mom and I traveled the four hour trip over to Tampa for the first RSD HOPE Conference. Keith Orsini, who started the website www.rsdhope.org and has had full body RSD (even in his eyes!) for 35 years, was the speaker and organizer of the conference. He is also organizing the first state -wide RSD conference so people can become more aware of this disease. I highly recommend you going to this website because it is very informative and gives lots of facts and should answer alot of your questions.

One of the handouts he had was the McGill Pain Index which shows that RSD patients are NOT exaggerating on how much pain they are in. This is good to compare our pain level to other types of diseases and problems you can relate to. For example, the highest pain score is 50 and a toothache scores a 19, cancer pain and chronic back pain score at 25, childbirth scores around 35 amputation of a limb scores a 39 and RSD pain scores a 41! We found this pain scale very interesting because it is hard to go into a doctor's office and they ask you to score your pain level from a 1-10 when actually every bodies pain tolerance is different. So, when I say my pain level is a 6 - your 6 could be much worse pain than mine.

Here are some interesting side effects from RSD that we discussed during the meeting:severe dry mouth, losing hair (no...not bald!..just when I wash it, more comes out than most people), insomnia, short-term memory loss, irritability (Mom can contest to that!! ;o) and depression. I suffer from all of these....

Another topic was the Spinal Cord Stimulator (SCS) that perked my interest because I was scheduled to get one. Keith did bring up some conflicting points that made me rethink on having the SPS implated. He mentioned that it is a very invasive procedure to have and can possibly lead to complications. Some of the key points he brought up were, the lead cords may break and they would have to go back in, but the most important point that concerns me is every time you enter the body through surgery, you have a greater risk of getting RSD in that area. So, that is why I am getting a second opinion from a doctor who is treating a lady who is in our area support group. Her husband is also doing a documentary on RSD, which may make it to a film festival, hopefully by next year ....(which we will be included in..autographs later..and please don't give out our address to the paparazzi....okay, go ahead...we need some company!! lol)

We also met a lot of very friendly people who understand what I am going through and got alot of email addresses to keep in contact with.

Mom and I then ventured off to our hotel and on the way home we had some therapy (OUTLET RETAIL STORES!!). All in all, this turned out to be a great trip and we're very glad we went!Until next time.....

~Rebecca~

April 17, 2008

First, I would like to thank everyone for their support in me for writing this blog and for your emails and comments!

For an update:
I am actually going to see another doctor for a second opinion on May 5th regarding the Spinal Cord Stimulator. It just worries me because it is a big surgery and I recently found out alot more information on it. I will have more info on the next blog regarding the RSD gathering in Tampa.
Unfortunately, the RSD has spread up into both knees more aggressively since the last blog. So now, I have RSD from my feet to my knees in both legs. For the past few weeks, Mom has been wheeling me around on my walker and we finally broke down and ordered a wheelchair (which will be here this afternoon!). We decided to go the wheelchair route because everytime I go out anywhere or even from my room to the bathroom, with the walker, I almost fall over due to having so much unbearable pain. I thought the walker was a big deal when I had to get that, but now having to get a wheelchair is even harder to imagine! Also, with Mom's fibromyalgia and her helping me around is getting harder for her and is putting more strain on her arms.
So, that's what has been going on here lately.
Please feel free to email me if you have any questions regarding RSD.
~Rebecca~

Hello Everyone!

I know I haven't done a good job of keeping in touch with everyone, so I figured a blog would be the best way to do it. I never thought I would have a blog and I also never thought that "my life would be taken away from me at age 24". By life I mean having to give up my great career in NYC, which Iworked so hard for. On Nov.5,2007, my mom came up to help the move go smoothly. We got on the plane to FL which is where I currently live and yes Nikko and Pedro came too. Having to go on disability (was approved for long-term which is great) and move back in with your parents is a huge pill to swallow!
How did I get to this point (for the people who may not know). I ended up having a stress fracture on my lower left leg, which was casted. My leg would get so swollen in the cast, I would call the Dr. and he basically put me up as a "whiner" and when it came off my paraneal nerve was blocked so I couldn't (and still can't ) move my foot up and down. Slowly it developed into Reflex Sympathetic Dystrophy (RSD). It is an unbearable painful disorder which can spread. In my case it did and I now currently have RSD on outsides of my lower legs up to my knees. I have to use a walker and wear braces to hold my feet up because I have drop feet and trip if didn't have them.
I found a pretty good team of Dr.'s I have a pain management dr. and also a psychiatrist. RSD promotes depression and with the loss of everything and not too much to look forward to, I have become very depressed. However, I've currently tested for the spinal cord stimulator, it basically makes your legs feel a tingle sensation and it has a remote so I can control how much stimulation I get and where in the legs. This process took away about 60% of the pain (still taking all of my pills). So right now we are waiting to get approval to do the permanent implant.
Well I think that is a good start.
Thanks for everyone's support.
~Rebecca~

Some Interesting Sites on RSD

This is one of the best websites-I have it on the what is RSD or CRPS (Chronic regioanal pain syndrome) terms are use unchangeable.
http://www.rsds.org/2/what_is_rsd_crps/index.html


I found this poem, which is all too true~
http://www.aboutrsd.com/chronic-pain-poem.htm