Life in the slow lane.....slow recovery for complex illness

[christinaw]

Hi All,
I've been out of commission and unable to post for while . . . two weeks ago I was taken via ambulance from my home due to chest pain and seizures and trouble breathing. Turns out that I had fluid on my heart. Another sad effect of chronic lyme. Sometimes it seems like my IC is the worst, and the some other symptom steps in and takes over. I feel like such a loss of life, with bed rest, etc. until stress echo and other heart monitoring tests occur. seems like I take two steps forward and one step back no matter what progress occurs. Just wanted to reach out to you folks that I KNOW understand this predicament of chronic illness. I saw my urologist today, and we had been discussing interstim as a option, but now with lyme flares affecting my heart, etc. the risk of infection is just too high - complications are too much of a risk. So, I am at a loss for other options for IC recovery or relief. I just don't know what else to do. Prayers and thoughts would be so greatly appreciated! My family just doesn't understand. It makes things so much harder. I wish that I could wear my bladder, my kidney, my heart, my lungs, my deformed joints and muscle holes on the outside of my body so that they could understand!!!
Anyway, thanks for listening.
Suffering in silence,
cjw

[ICNDonna]

:grouphug: I wish I could help.

Donna

[traceann]

Sorry you are having such a rough go right now! I too wish there was something I could do, but I will keep you in my prayers!:grouphug:

[SharonA]

Christina...I am so sorry that you are going through all of this. I am sending you (((hugs))) and prayers.

[Claredale]

I understand about the fear of infection. Every surgery I have ever had has taken a while to heal. My first interstim, while put in perfectly and it worked great, I had to have it removed due to infection (after the incision was closed). They took it out after my antibiotics failed. But luckily they put in another one on the other side. I definitely had to veg out and was on IV antibiotics for awhile. My surgery was in 2002, so it is probably getting close to needing a battery change, but my doctor wants to put the new one in with the 8 leads. I told him that I wasn't going to do anything until the implant actually needed the batteries changed. I don't want to take any chance for infection right now.

I hope you feel better soon!

Tracey

[Kara29]

Christina,

Many of us understand what you are going through with more than just IC. I'm so sorry that the Interstim will not be an option for you. Maybe one of the other less invasive treatments for IC will come around and work for you. It's really tough when friends and family don't understand. Have you tried to send the to this site? There is a section on here just for family. There's also a lot of great literature on IC and other conditions. The ICN Patient Handbook can be helpful to print out for some of them who would be willing to read it.

http://www.ic-network.com/handbook/

The message board for family members is here: http://www.ic-network.com/forum/forumdisplay.php?f=62

We are all here for you any time you need to talk about your feelings.

Hugs,

Kara

[sandramac]

:pray: I HOPE YOU GET WELL SOON!
HUGS Sandra :cat: :cat: :cat:

[christinaw]

Hi fellow IC-ers,
Thanks so much to all of you for your kind words of support and encouragement, thoughts and prayers. The last few days have been the most difficult that I have had in a very long time. My lyme symptoms are really flaring, and I haven't been out of bed at all today. Self-catheder b/c I can't make it to the bathroom. :( Praying that tomorrow will be a better day.
Anyway, thanks again for all of your words of encouragement. It really helps to reach out to ICN when family and friends just can't seem to understand what I'm going through.
Well wishes to all of you,
cjw

[Bessie]

I am sorry you are feeling so bad and having so much trouble. I hope tomorrow is a better day and I will be praying for you :pray: