From the Encouraging Fairy - Interstitial Cystitis Network Support Forum

Skynard · 11-25-2009, 12:10 AM

I don't know where to post this, but I thought this might be the right place.

I get on here sometimes and it bums me out. I can't stand the idea that so many of us are in pain and that I can't help each one of you out personally. It is in my nature to fix everyone's problems, yet on this one, my hands are tied and I am sorry about that. I do realize all this is in God's hands.

Here goes...on Monday evening, I went from a two to an eight (on the pain scale) in about thirty minutes. I have never experience anything like that so quickly. We put my emergency plan in place and nothing was helping. We were very close to going to the hospital after I passed out in pain, but God got us through the night. First thing in the morning, I called my doctor and they wanted me in right away.

I am so blessed. Whenever I call, they fit me it. I had an emergency/rescue installation AND the nurse took the time to show my husband and I how to do them at home AND she gave me several items so I didn't have to buy them AND she took the information down about this site so she could be more informed about how some of her IC patients feel AND she encouraged me to start a support group (I have no clue how to do that) AND she cried with me AND she thanked my husband (an angel in disguise) for treating me so well. We left and promptly ordered her some flowers and candy.

I post this because there are some of you that are frustrated with your doctor and you feel like giving up. I just want you to know that there really are great doctors and staff out there. I encourage you to keep looking and to keep an open mind. I didn't get cured, but I do get compassion and respect and that goes a long way.

I wish you all well on your journey.

God Bless,

Skyn (aka the Encouraging Fairy)!! : )

awilson4356 · 11-25-2009, 02:47 AM

Thank you so much for your encouraging words. They mean alot to those of us who need them and especially to me. I am finally doing well with maintaining my IC but I know that can change in an instant. So your words let me know that even if this would happen to me that I can get through it again because I have already done it once with the help of my family and friends like you on this site who understand and are struggling with me. I also know that you are sending well wishes, good thoughts, and healing support as well. So please know that you are appreciated very much.

Best Regards,
Angie

vm · 11-25-2009, 03:07 AM

How awesome. That nurse sounds wonderful!

***ICNDonna*** · 11-25-2009, 03:10 AM

I also am fortunate with both my primary care physician (and his nurse) and all of the staff at the urology office where I go.

Donna

RobertAG · 11-25-2009, 04:08 PM

I hope you are feeling better. Your encouragement a few weeks ago really helped me. IC really sucks, no doubt about it. You feel better and become hopeful and then the flares start up or increase in intensity.

To bring you up to date, I am moving forward with the new house, sometimes nervously and reluctantly so especially when my symptoms flare up (like now!). I have not been on this site very much recently because I have been running back and forth on a regular basis between my current place and the new house and working as well. I am getting some much needed work done in the place before I actually move in. I still have moments of WHAT AM I DOING!

Oh well, a little humor now -

Like everyone else on this web site, I hope one day very soon they will find a cure for this dreaded illness. The first thing I will do (after getting cured of course) is toast the cure with a large soda or coffee (probably both), a large bowl of citrus fruit and a chocolate bar!

Robert

Skynard · 11-26-2009, 03:01 AM

Robert - it is great to hear from you. I was going to PM you yesterday and I opted for sleep instead. Sorry! The Percocet I am on makes me very sleepy. I guess I am going to be doing home instills now once a week. They taught my husband and I how to do them on Tuesday. I am having a mental block about the whole thing, but I realize it gives me the freedom to take control over my body and when an emergency happens like the other night, I have anothor option.

I am so very happy that you have decided to move on the other home. I think you will be glad you made that decision. Maybe you can email me some pictures when it is all done.

When they find a cure for this, I am heading straight to the Cheesecake Factory and ordering a WHOLE Linda's Fudge Tower Chocolate Cake and eating the entire thing myself chased with a big 'ol glass of DIET (of course have to watch the calories) Dr. Pepper!!!!!

I hope you have a terrific Thanksgiving and a Merry Christmas!

Skyn

RobertAG · 11-29-2009, 04:10 PM

Skyn:

I hope you had a nice Thanksgiving and are feeling much better. My IC continues to act up and subside. I will send you a picture of the house if I can.

I have to tell you though as I go through this process, I just wish I had known about the IC four weeks earlier. I thought I had an enlarged prostate. It makes me so angry every time I think about it that I did not as I would not have bought that house. Huge buyers remorse due to IC. The fact that I fell through the cracks for both the $8,000 and $6,500 home buyer tax credits just added to my uncomfortable feeling about this decision. Like moving to this place will be ominous for me in the future, that kind of thing.

I do hope you are right about this working out. Thanks for allowing me to vent again.

Robert