Hello, Friends!!
Gosh, seems like I haven't been on here for ages!! I have been really in so much pain, that it is driving me insane!
Anyway, I now have a new primary Doctor and I do NOT have to get those Stellate Ganglion nerve blocks anymore!! I had eight of them and they didn't do much good at all, so my PMD and my PD said no more!! I am still on the Fentanyl pain patch and he now put me on percocet for break through pain.(1 tab. every 8 hrs.) It does help some and I told the new PD that I am scared to have the spinal cord stimulator!! Such a baby, I still am! Anyway, just want to say Hi and I do see so many new names on here!! to each one of you!! Yes, I am lurking this morning! Alison Dear, Happy belated 13Th Birthday, sweetie! I do hope it was a great and wonderful Birthday for you, sweet one. sending warm gentle your way. I am now going to lurk some, then soak in a nice warm epsome salt bath. If I don't get back on here before Easter, I want to wish every single one of you dear friends a HAPPY AND BLESSED EASTER. My daughter who is going to be 8 already in May, is anxious to color Easter eggs and she and her daddy(maybe me, if I am not in too much pain) will be taking her to an Easter egg hunt on Saturday. Wow, friends, can you believe it is Easter time already?? We have had so much snow here, that it is really getting on my nerves.. LOL Well, love and pain free gentle ((())) to each and every single one here!! Love, Desi

Desi,
Happy to hear from you but sorry to hear you havent been feeling well its awful you need some warm weather but your epsom salt bath sounds wonderful . I just came back from a 10 day ketamine booster in Philly I saw my wonderful devoted dr. schwartzman and the nursers in the infusion room. I am feeling much better. Ther were able to get 6 pounds of the 10 pounds of fluid out of my back and the horrible blood red back is gone. Thank God if some one can tell me how to post a picture I will put the picture of the flare up of the century on there! Dr. S as always was so kind. He never runs out of compassion= I figure if he can keep going I can keep going. Anyway Desi so nice to hear from you. I met some nice people there, alot of people just starting out with the program first days etc and they need it really suffering. coincidently three really nice people from florida no names of course. My husband was with me the second week my sweet sister the first so I felt loved and blessed to have them both , you need them treatment is not easy. Im happy to be home though just got back yesterday so on bed rest for a few days it takes a lot out of you. Stay in touch Desi hope your pain improves tomorrow. I would be shy of the scs too! Ive had the coma but that sounds scarier to me!!! Take care and welcome back sincerely cz



orginal message from Desi
Anyway, just want to say Hi and I do see so many new names on here!! to each one of you!! Yes, I am lurking this morning! Alison Dear, Happy belated 13Th Birthday, sweetie! I do hope it was a great and wonderful Birthday for you, sweet one. sending warm gentle your way. I am now going to lurk some, then soak in a nice warm epsome salt bath. If I don't get back on here before Easter, I want to wish every single one of you dear friends a HAPPY AND BLESSED EASTER. My daughter who is going to be 8 already in May, is anxious to color Easter eggs and she and her daddy(maybe me, if I am not in too much pain) will be taking her to an Easter egg hunt on Saturday. Wow, friends, can you believe it is Easter time already?? We have had so much snow here, that it is really getting on my nerves.. LOL Well, love and pain free gentle ((())) to each and every single one here!! Love, Desi [/SIZE][/COLOR][/QUOTE]

Darling Desi,

You have been in my thoughts often. I am sorry you have been in so much pain.
I hope you can enjoy your Easter Egg Hunt with your little girl.
Lots of love and less stress
Tayla

Hi ya CZ! Hey, what does CZ stand for anyway?? Anyway, thank you so much for your kind reply back to me. So, you just came back from a 10 day ketamine booster in Philly?!! What was all that like?? Please do tell all! LOL anyway, CZ, I am so happy that you are doing much better!! I love hearing that! So, they took 6 Lbs. of the 10 Lbs. of fluid out of your back!! OMG!! What is up with that? How did you get all that fluid there in your back?? Ouch!! I am so glad to hear that Dr. Schwartzman is so good and kind! That is great to know, CW!!! Your an "Awsome friend"!! Thanks so much Lady for replying back to me!! Take care of you! You will be in my prayers, Dear one! Love, Desi

Hi Sweet Tayla! Thank you so much for replying back! Your a real sweetheart, you know that don't ya? why, sure ya do! Anyway, It snowed here for my Daughter's easter egg hunt, so they had it indoors. I could not make it. I did however play easter bunny and hid lots of Easter eggs here for her to fiind on Easter morning. I made a total of 83 eggs.(With the help of my hubby) She got a huge Easter basket with lots of goodies, plus, Hannah Montanna stuff.(That girl is rich, making money off consumers like me! LOL) Anyway, thank you again for replying back my dear! How have you been doing? Love ya! Desi

Hi Desi, sorry it took me so long to get back- but it was great to hear from you too . CZ stands for initials in my name not too creative I guess!
The fluid is not in the tissue like Fibromyalgia, I've been told with rsd it collects in the nerve cells. I know , it cant be something normal like taking a water pill..lol thats rsd for you. The infusions take the fluid out of the nerve cells. I have no idea how or why they do. But one time I had to be hospitalized for 5days in ICU up there and they estimated I had 13 pounds of fluid between my two legs- they were huge my calfs, and so painful, red hot burning. After the 5 days, which i was basically unconscious for , the fluid was gone , the alloydina and the pain was significantly reduced from like a 9 to a 4 with meds. So I am very dependent on the infusions for severe flares that my meds can not reduce. This time i was scheduled for a week but it took two weeks to get it out as an outpatient. Im very grateful -the pain was intolerable -I particuarly hate spine pain- mine is in the middle of the spine but the alloydinia and swelling covers my entire back.

Enough about me Are you feeling better? What has been going on with you? Could you update me? I am hoping to be able to go back to the therapy pool. I have lost allot of weight but I do not have a muscle left in my entire body... not pretty. Do you go to a therapy pool? Let me know ok? It was great to hear from you. Sincerely CZ

QUOTE=Desi;244844] Hi ya CZ! Hey, what does CZ stand for anyway?? Anyway, thank you so much for your kind reply back to me. So, you just came back from a 10 day ketamine booster in Philly?!! What was all that like?? Please do tell all! LOL anyway, CZ, I am so happy that you are doing much better!! I love hearing that! So, they took 6 Lbs. of the 10 Lbs. of fluid out of your back!! OMG!! What is up with that? How did you get all that fluid there in your back?? Ouch!! I am so glad to hear that Dr. Schwartzman is so good and kind! That is great to know, CW!!! Your an "Awsome friend"!! Thanks so much Lady for replying back to me!! Take care of you! You will be in my prayers, Dear one! Love, Desi[/QUOTE]

Hi ya CZ!
Hey, no problem about writing back so soon! I sooooooo understand!! There are times that I can't write back when I would like to also. RSD just plain does what this "Beast wants to do"! So, not to worry okay? Anyway, you sure have had your fair share of this awful disease!! Gosh, and here I am whining the blues!! Those calfs have HAD to hurt soooooooooo bad!! You poor thing you!! And spine pain, I can't even imagine that too!! I hope and will pray that you get to feeling better and you don't have to endure this fluid any more! Gosh, Lady.. Poor you!! :0(
As for me, I am still holding off on going to Cleveland to see about getting the Spinal Cord Stimulator. My new family Doc. says for me to hold off if this is the way I am feeling right now. He said lots of people do this. If I am ready and he says so, I will for sure get it done at Cleveland hospital, as I am only 45 min. to an hour away. He will get me one of the best surgeons he knows, too. I do not go to a therapy pool. mine (RSD) was caused by carpal tunnal surgery in 2007 Jan. 9th. and it spread from my wrist up to my neck.(All on the right side. I am right handed too! I was having some physical therapy, but am no longer allowed to, as this was causing such a flare. I did pretty good when the RSD was first caught, which was early, the SGB they gave me did no good, I won't be getting those blocks anymore, so I do not know where I stand. My hand, fingers swell up so bad, turn blue, red. Also my RSD hand gets so cold that I wear a glove or my fuzzy robe with the wide pockets in them. If and when I do get that SCS put in, maybe that will help. I have had more positive things said on this than negitive from the folks on here.
Well, you take care my friend. My prayers, thoughts are with you CZ. Much love!~Desi

Sorry for only just replying to you - we have been pretty busy with hospital appointments etc.

How are you doing? I really hope that you are doing OK and that you had a lovely Easter with your family!

Me and my mom went to see a new PM doctor last Tuesday, he was nice and wants me to try an intense Physical Therapy course (it will be a 2-12 weeks in patients appointment!), he is going to ring my mom when I have had the ingrown toenail removed to arrange a PT assessment.

I go in hospital for the ingrown toenail removed on Wednesday, I have to stay in over night as my PM doctor says that it will probably make the pain worse so I will need some extra strong pain killers - I will let you know how it goes. I am having it removed whilst i'm asleep so hopefully it shouldn't be too bad!

Pain free hugs,
Love and best wishes
Alison

Hi there Ali!
It is sooooooooooo good hearing from you!! I am doing pretty good. I still am in a flare, but hanging in there. My family doctor is sending me to a specialist,towards the end of this month, as he thinks along with this RSD, I may have an artery laying on some nerves? He said he does not want to leave any stones unturned. He did an EKG right in his office(Well, his nurse did it). Everything came back ok with that! Thank God! Ok.. enough about me,Missy! LOL
So, your going to be an inpatient for 2-12 weeks for intense PT? Alli, You have already had your surgery for that ingrown toenail, right? I am praying for you that you are doing alright, I am hoping also that you have a speedy recovery. (((Huge Hugs, Ali))) Love you!!~Desi :0)