3rd Treatment Update

I finished my 3rd and hopefully last stem cell treatment (for a while) on 02/19.
Dr. Newman used the last of my stem cells and ended up injecting some extra to help reconstruct some areas that the LS fused and basically took away. I can't tell yet if it helped, as I still have some healing to do.  He also scraped two areas that were white and built-up from the LS. These are still raw, but healing just the same.

It has been 11 days today since I got the treatment. The swelling is pretty much gone, but the itching, rawness, stinging and heavy feeling on the perineum (when using the bathroom) is still very much present. I also can't sit on hard surfaces without discomfort and can't walk for very long. It takes weeks for the stem cells to do their job and so I am patient and looking forward to the weeks ahead.

I am very blessed to have stayed with my brother Brooks in L.A. My other brother, Bryan, just moved there with his family and so we got to visit with them as well. I am so grateful I don't have to worry about hotel costs when I go. 

Matt went back to work today (from FMLA). It was so nice to have him home helping with meals, the kids, activities and general household duties. I am definitely a grateful woman.

I am so hoping that this will be the last treatment and I will go into remission in the next few months. Since I have not had luck with doctors in the past (other than Dr. Newman), I have decided to see a naturalistic doctor in order to prolong my remission and do everything possible to heal.  Keep in mind that the stem cell treatment is not a cure, but rather a therapy. Now the challenge is, to find one that is very knowledgeable in LS. As I have mentioned before, the remission for patients has been typically 1-3 years. Three years would be awesome, but, I could only have relief for one.

I can't imagine fundraising again. Hopefully one day in the future, insurance companies will cover the treatment LS patients don't have to cover the whole cost.

I have noticed some nerve damage (probably from the constant tearing of skin). A few patients are on nerve blockers and I may look into that eventually. Even with the treatments, many patients can't sit for long periods of time (desk jobs), so I am also hoping to find a job that will fit with my needs.

I still can't believe that I have this terrible disease. While I am so grateful for
Dr. Newman, his staff and all the people that made it possible for me to get treatment, I am fully aware that I will have rough roads ahead and I pray that I have the strength to get past them. ~S