Love is patient and kind; love does not envy or boast; it is not arrogant or rude. It does not insist on its own way; it is not irritable or resentful; it does not rejoice at wrongdoing, but rejoices with the truth. Love bears all things, believes all things, hopes all things, endures all things.
1 Corinthians 13:4-7
****9/30/2013: First day of treatment! We are all so anxious, nervous and a bit scared! We are hoping for a miracle or at the least just some relief from the constant unrelenting
pain. We arrived early,m and were taken to the room quiet quickly. The staff is friendly and kind. The other Patients in the room had all had infusions before and seemed to be quite settled.
Though, most had some sort of atrophy all showed different signs and had contracted CRPS in different ways, most from surgeries. The nurses got everyone hooked up and ready to go.
The Dr. decoded on doses and requested that Heidi be put under before the procedure of Ketamine be administered, However, they started it at the same time and had to stop it until she was
more sedated. She was infused with a very small dose 200 mg to start for the first day which is administered over 4 hours. She responded well and we were able to hug her (: It did ware off in the
evening to some degree but maintained a little less pain.
For further info on treatments go to Octobers File. (:
Okay, so September has arrived! We've met wit the psychoanalyst and she's giving Dr. Prager the full steam ahead with Heidi.
We are all so elated, scared, and anxious to see what kind of treatments Dr. Prager is going to want to start with Heidi on.
Heidi is so very excited.
9/4/2013: We had our office visit with Dr. Prager and he wants to start Heidi on a series of 10 Ketamine infusions. In order for him to
do these he had to have Dr. Jacobs decide if Heidi was mentally stable enough and willing to allow the treatments to work. It will be a ten day
in Los Angeles, to a tune of 28,000. So that is our first fundraising goal. We will be in LA from 9/22-10/3.
** This is just one of many treatments. Treatments for this disorder are going to be astronomical and as we have depleted our funds getting to this point we have been so very
blessed and grateful for all those who have been donating to Heidi's trust at heidisjourneyofhope.org.
9/4/2013: We also visited with Dr. Jacobs today. She wanted to review Heidi's test and see how she was doing. According to her Heidi
is very bright, intuitive, caring, and will be a great asset in helping others get through similar things that she has been going through once she
is in remission. Once again, Heidi felt overwhelmed and excited to know treatment is coming and that she now has an understanding support
* So the big goal is to start getting those who are willing to help with Heidi's treatment to spread the word, and keep up the warm thoughts and
prayers. We love you all.
9/04/2013: We met with Dr. Prager on the 4th, and with all okays from Dr. Jacobs, instead of starting Heidi on a trial Ketamine infusion he would like to give her a full 10 day course. Heidi was
so very excited as were we. The total cost is going to be around 30,000. That is for the infusion, surgical center hotel, etc. The largest bulk is the infusion. We can only hope that we can raise these fees.
The treatment date starts the 30th and runs through the 11 of October.
9/07/2013: Fundraising has begun and Heidi's Journey of Hope Web Page is taking form. Thank you everyone for all your hard work and help.
9/19: We have gathered enough money for Heidi's medical treatment. We are still working on the Hotel and follow up visit but we are one our way and hopeful. thanks for all the encouraging feedback from fellow CRPS sufferers. Today was a "Bitter Sweet Day." We raised enough to begin Heidi's pain management portion of her treatment yay!!!
However, Heidi's best friend, and I do mean the truest of friends, leaves tomorrow to begin her college life. Heidi had planned to do Jr. college while Rachele finished up her high school years so they could possibly apply to the same colleges. This wasn't to be the case and Heidi has had to follow a different path. It is very painful for Heidi to cry so she holds it in now most of the time. Tonight, she cried herself to sleep. It was very hard on the family not to be able to hold her and comfort her. All we could do was use our words and try to comfort her through them. We will miss our dearest Rachele. We wish her happy times on her new adventure.
With this new path, Heidi, has already encouraged and helped several people that have needed some support battling their CRPS and has even some of their parents. She has made new contacts and begun her journey of helping others. One young girl that Heidi has been speaking with was truly ready to give up. Heidi and she have been talking daily and the young girl is holding on. We want her to know we are there for her.
9/29/2013: Monday is the day! Heidi starts her first week of treatment. WE CAN"T BEGIN TO SAY HOW MUCH YOU ALL MEAN TO US.
We are all so scared and excited at the same time. We have such a long road ahead but we know we are headed the right direction.
Thanks to all who are so willing to help us with Heidi's journey. Together, we can and will see her get through this!
*** We have been asked for so much advice about CRPS. The thing that we would like to stress at this time is that it is different for everybody as are the treatments. Find a CRPS/RSD doctor, like Dr Prager, who attacks CRPS from a multi-disciplinary facet. No two people are the same, no CRPS reactions are the same. CRPS can go into remission by itself, it can stay generalized, or it can spread. We cant stress enough to keep going, get a good RSD doctor, and fight our medical system as well so we can start getting the proper training for doctors and care for all those who suffer. Beware of those that say they treat CRPS but actually are just learning or have old views on how to treat this condition. Finally, stay strong and you can prevail. there are those out there fighting to help.