Friday, July 30, 2010

Support System

I'm sorry it's been so long since our last post. I've really been having a hard time with my usual. There are some days where I can't even walk to the bathroom and have to use a wheelchair. Even the slightest movement causes me spasms and so much pain. I wish there was something that would control the spasms even if it was lessened by 50% I would be happy. I have already tried four different medications for the spasms. The last and most current one is called Prosed/DS. It is also supposed to help with the horrific burning sensation in our bladders. When I was put on this originally it helped some with the spasms but not for the burning pain. I don't think anything helps with that pain ever. Anyways the Prosed/DS hasn't really been working lately. How about any of you do you get painful spasms? I know mine feels like someone is electrocuting my bladder and trying to rip it out from my body all at the same time.

Lately it's been hard for me to exist in a world of people that are normal. When I say normal I mean that they don't suffer from IC. My IC sisters have really been there for me. They are a great support system. When you're talking to someone that suffers from the same disease as you they can completely understand what you are going through. When you say you were up all night bleeding so bad from your bladder and stuck in the fetal position they know exactly what you're talking about because they were probably doing the same thing. Family and friends just don't understand how bad we would love to be normal again.

I've been struggling with the lack of friends and family in our life. All the literature, websites, doctors, etc compare what we are going through to cancer but where is everyone? Everyone I talk to say it's the same for them too. Their friends and family are not around and many of them have been left by their husband's because of this disease. Is it because they don't understand the disease? Do they think we are faking it? What do you think because I don't understand it at all! I know my best friend told me that sometimes she doesn't know what to say to me because she feels so bad for me and doesn't want to talk about her problems to me because they seem minimal compared to mine. I was glad she brought this up because I was able to tell her that I want to hear everything that is going on in her life. Just because I have IC doesn't mean that's all we can talk about. Honestly, most of the time I'd rather talk about other things because it gets my mind off of it. So maybe our friends and family members need to communicate more just like my best friend did. I've always told people in my life they could ask me questions about my disease so make sure you make that clear to them and also encourage them to check out the ICA and IC Network.

Here is the Facebook page where I've met a lot of IC sisters. It's called The Official Interstitial Cystitis Network on Facebook. I've also met many from the ICA Facebook page as well. I really encourage you if you have a Facebook to go on both of these sites and start posting and meeting others that can relate to what you're going through! Also, if you'd like you can add me on Facebook as well.

On another note, I had my second round if trigger point injections last Wednesday for my migraines. This round was really painful for me actually. The doctor started doing the shots before the anesthesiologist put the pain medication into my i.v. Needless to say I screamed in the procedure room and there were some tears as well. I'm just finally starting to feel better from the procedure. I literally spent every waking moment lying my head and neck on an ice pack. It was the only thing that would remotely help with the pain. When I have the trigger point injections done I also have them in my occipital joints. If you don't know where that is it's where the little balls in the back of your head just at the hair line. These are the most painful ones to have out of any trigger point injection. I have these ones done specifically for my migraines. The night before my procedure I had one if the worst migraines ever. I was up half of the night vomiting because of it. Next month on August 11th I go in for my third and final round. I really hope they help because I don't want to have to do this again for awhile. Last time my trigger point injections lasted about a year before I had to do this new set.

Hope everyone is well and sorry again for taking so long to post. <3

1 comment:

Music City Mel said...

Hi, Nic-e! I was thankful to run across your blog. I have been diagnosed with IC since 2005. So many of the things you have written are echos of my own thoughts! I am saddened to know that another suffers the way I do, but was relieved to know I am not alone. I would really love to exchange emails with you and learn more about your battle with IC. I have recently become house bound as well and am trying to agressively treat my IC with no luck. I would love to share our IC experiences and just be able to be a source of support for one another. Love and healing to you!

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