Tuesday, August 10, 2010

Voices of IC Web Event

Today August 10th at 8pm Eastern time/5pm Pacific time Ortho Women's Health & Urology has partnered with The Interstitial Cystitis Assosiation or ICA to host an educational webcast called "The Voices of IC". The webcast event will be made up of a panel of patients that have IC as well as a number of healthcare professionals. The event will hopefully raise awareness for IC. We definitely need a cure and I am thankful for people like this that are trying to help us get there! As part of the discussion, participants will have an opportunity to opt-in online to submit questions to panelists. You need to register before the event at The Voices of IC website. It looks like your City, State, Age, and Sex is all that is required.

I've been in touch with one of the Ortho Women's Health & Urology's representatives personally. She told me that she has been reading our blog and I was very touched by this. She was the one that informed me about The Voices of IC event. I hope that everyone attends this 1 hour webcast. This is a great opportunity to encourage friends and family members that keep questioning your condition and don't understand what you are going through to attend this webcast event! I will be posting it on my Facebook page as well and hopefully soon IC and all who suffer from it will get the awareness that it deserves!!! After the webcast event I'd love for you to come back here and leave any thoughts or comments you have regarding what was or wasn't said! Tell me if you invited any friends or family and if they showed up and how it went!! Hope you are having a pain free day! <3

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 pain...as 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

Monday, June 14, 2010

Online Shopping

Let me begin with I LOVE to shop! I love to go up and down every aisle and look at everything. Target is one of my favorite stores and I get all excited when their end caps are filled with new products. Well, unfortunately I don't get to go shopping really anymore. Other than going to the doctor's office I maybe get out of my house once or twice a month if I'm lucky.

Just the act of taking a shower and getting ready to leave the house is such a painful agonizing ordeal. The entire time I'm in the shower I can't wait for it to be over. I'm doubled over crying out loud in pain practically the whole time. My husband helps me every time with taking a shower and getting me dressed. I'm thankful he is there to help me or else I don't know how clean I would be.

Before my disease took over my body like this I had a lot of fun going clothes shopping. Trying piece after piece of clothing in the dressing room was fun for me but now it is impossible. Not only has the items of clothing I buy changed but the way I shop has now changed. I can no longer wear cute skinny jeans or pants that are tight in the waist area. The seam on jeans puts a constant rubbing and pressure sensation on my vulvar region and increases my vulvodynia pain. Jeans and other non-loose pants put a lot of pressure in general on my bladder and lower abdominal region which causes me a lot of pain. This has made me so sad because I love to wear skinny jeans.

I've also had to be creative with what I buy. At first I just bought a bunch of the same lounge pants from Target and cotton tank tops, but this made me feel like I was always wearing pajamas. I still wear lounge pants, because they are loose around my waist and bladder but I pair them with more fashionable tops. I have been able to find tops that are cute, loose, and most of all flattering.

I mentioned that the way I shop is different now. I can no longer jump in my car and go shopping for a couple of hours anymore or even try to bear 20 minutes. Now I do my clothes shopping online. It's definitely different. There's no aisles to walk (or wheel) up and down, no racks of clothes to look through, and you can't touch or try on the clothes. I had to get used to this way of shopping. At first I had a very negative attitude towards it, but there are some positives to the online shopping that I'd like to share with you!

#1 24 Hours A Day - That's right stores don't close online. This means you can shop from the comfort of your home anytime of the
day when it's convenient for you! Even if it's when you're in your pj's wearing your pink bunny slippers. This is the biggest positive
for us because we don't have to leave our homes or even our beds for that matter.

#2 Coupons - Many stores have coupons or promotional codes that can only be used online and often times if you spend a certain
dollar amount they will also provide free shipping! If you don't see a coupon on the website do a search for a code in Google or
Yahoo. Also, many online stores/websites have an email sign up that you should always go ahead and sign up for because most of
the time you'll receive coupons, sale notices, and other specials that you wouldn't have known about otherwise.

#3 Online Only - Most websites carry items that you see in stores, but they also carry their own online only items. This is nice
because I've found many items from cute summer tops to comforters and duvets. Sometimes if you're used to shopping at the
same stores it's nice to find these online only items. It gives you more variety and it can be fun looking at the new items they have
in stock.

#4 Clearance - Always check out the clearance section of the website you're on. I usually visit that section first, because you never
know what you're gonna find. I myself have found some pretty amazing deals! Just a few weeks ago I got a couple of tops
from Old Navy for only $6 each. They were regularly $18 each but were on clearance and I also had a coupon code in my email
inbox for an additional 10% off. I got a really great deal and was happy with my purchase.

I hope this let's you know a little bit more about online shopping and maybe you won't be too intimidated to try it out. It's definitely better than the alternative which is either not ever having any new clothes or somehow dragging yourself out to go shopping. Let us know if you have any experience or tips with online shopping and what your favorite websites are to shop from!

Tuesday, June 1, 2010

CFS and Migraines

How was everyones Holiday weekend? Did anyone do anything special or fun? A BBQ perhaps? Whatever you did I hope you or your loved one was pain-free. On Friday night one of our longtime friends was having a going away party. It was at a restaurant which meant I probably wasn't going to be able to go. Why you ask? I can't sit for even 2 minutes before I get excruciating pain and pressure in my bladder and vulva area. So this limits me to everything basically. That's why I am either lying down in bed or on the couch. Do you have this same problem? Needless to say I was bummed that I couldn't go to dinner. Do you miss out on social events too? It's hard isn't it? You already are suffering from chronic pain and other problems we shouldn't have to deal with this too! I get so angry sometimes because I am so limitled from this disease. To tell the truth I get angry at myself because if I didn't have IC these things wouldn't happen, but my husband is always right there to tell me that I don't have control over IC and I didn't do this to myself! So if you ever feel the same way sometimes remember that. Even if you can't go out and be social are your friends and family still close with you? I feel like this disease is very lonely! You know that's why they call it the invisible disease. They compare what we are going through to cancer but because our hair isn't falling out, people have heard and understood cancer vs IC, etc they are less likely to be there for us.

Even if I didn't get the horrible pain with sitting I wouldn't have felt good enough to go to the dinner on Friday. This weekend I have a huge increase in my CFS or Chronic Fatigue Syndrome symptoms. For so many years I had no idea I had CFS or that it goes hand-in-hand with IC. I would complain all the time that my muscles hurt so bad like I'd been run over by a truck you know the way you feel when you have the flu? I thought I was crazy because I literally felt like this all the time even when I appeared fine and healthy. This is one of the key symptoms of CFS. Lately I'm always taking a flashlight and checking my throat in the mirror. My throat doesn't look red and I shouldn't be sick anymore because I had my tonsils taken out 2 years ago. Guess what? Having a sore throat is another key symptom of CFS. Of course the main symptom the one it gets it's name from is fatigue. The other key symptoms are difficulties with memory or concentration, problems with sleep, joint pain without redness or swelling, headaches, and tender lymph nodes. If you have a couple of these symptoms or more and haven't been diagnosed with CFS it might be a good idea to talk to your doctor about it the next time you see he/she.

Along with the increased pain in my muscles all over my body this weekend last night I got a severe migraine. I almost threw up on multiple occasions either from sound or light. We turned every light off and of course at the onset of the headache I took my migraine medication and eventually took a couple hour nap. When I woke up the migraine was still present. It wasn't as strong but I was still affected by it. I had to wear my sunglasses at night in the house and ask my husband to talk very quietly. Today I still have a very bad headache and the light and sound are still affecting me. I also feel a little nauseated. If you didn't know migraines are also caused by our IC. I hope that none of you have to suffer from these but if you do I'm sorry.

I wish everyone a good week and again let's hope for that IC cure! And I want to hear from you about all my questions above! <3

Tuesday, May 11, 2010

The Last Two Weeks

Sorry we've been so quiet. I've really been having a hard time. About 2 weeks ago a bad flare started and I was heavily bleeding from my bladder. This caused me a lot of increased pain but last week was one of the hardest weeks I've had in a while. For 4 days straight I was completely incontinent. It was so miserable. So of course this meant that I had to cath.

When you have IC you're going to the bathroom every 30 minutes but when you have to catheterize yourself you can't do it that often. This brought on a lot of frustration and pain in itself. I'm used to going to the bathroom and instead I had to wait a few hours in-between each time I cath which caused so much pain and pressure in my bladder. Ouch!

Ok well that's not the worst of it. The worst part of the whole thing was that we ran out of our normal rubber catheters we use so we used these other short plastic ones instead. The first time it worked fine, but the second time something terrible happened. Because I was so swollen this plastic cath decides it wants to latch on to my insides and never let go! Oh my gosh I cannot tell you how badly this hurt. I screamed and cried more than I ever have in my entire life. The way I described it to my husband was as if someone had taken a surgical clamp and clamped it to the inside of my bladder or urethra and then started pulling. It literally would not come off. I guess what had happened was the swelling on the inside had nowhere to go when the catheter was in there so it went into the holes of the catheter tip. I tried to just slowly inch the catheter out but it wouldn't let go of my bladder and plus it made me scream bloody murder so I had no other choice than to yank it out. I did it in a short but fast motion and it finally let go. When I handed the catheter to my husband it was filled with bright red blood. I was already crying because of this stupid plastic catheter that just cut my insides. Needless to say this went on for 2 more days while we were waiting for our supplies to be delivered.

On the 4th day my pharmacy said they do not take our new insurance so Rich went out to the regular pharmacy and just paid cash for some catheters until we could get the correct order in. I was relieved to have the right catheters but still nervous because I felt like I had been tortured over the last few days. I mean I have an open wound inside me and it just kept getting reinjured after every catheter use. The first time I used the rubber catheter after I got cut it felt horrible. Yes, it didn't cut me like the plastic one did but since it was rubber when it touched the wound it irritated it. It felt like someone had poured rubbing alcohol or lemon juice on the wound. I was not happy. Luckily the next day I was finally able to go to the bathroom on my own and I have been able to since.

I'm still in a lot of pain and now trying to recover from last week. I was working on another post about my IC background when all of this happened. So I will be posting that hopefully in the next couple of days. Thank you all for the positivity and support for us and our blog. I know a lot of our readers also suffer from IC and we hope that you know you are not alone in this.

Wednesday, April 28, 2010

Late Night Incontinence

Well it's a little after 1 o'clock in the morning. I have not gone to bed yet which is pretty normal for me. I tried to go to the bathroom about an hour ago and was unable to. This happens to me sometimes a couple of times a day or maybe as little as once a week. My doctor (urologist) has told me it is because my bladder muscles are weakening. It is very frustrating for me when this happens because if I cannot urinate it causes me a lot of pain. When there's urine in my bladder it irritates my bladder so not being able to get it out just causes me more irritation and pain. On top of the pain there is this constant urgency to have to go to the bathroom.

I also started my period yesterday. This causes my bladder to begin to flare. When I have my period though it's a different type of flare. It is a much deeper and more sharper pain than my other flare ups that I have. I can tell when I am on my period my urethra especially hurts. It feels like there are deep cuts in it like someone is poking me with needles. My back is really hurting me right now as well. This is not just because of my period. I get this symptom all the time as a side effect from the IC.

I hope I can go to the bathroom soon because if not I'll have to wake Rich up to help me cath myself. I can't stand holding it in much longer and I'm starting to have bad spasms because of this. I can't fall asleep until I relieve myself one way or the other. It's kind of a vicious cycle because once I finally fall asleep I get up all night to go to the bathroom. It's really not fun.

Ok well I hope to get some sleep. I just want to thank everyone that has read our blog so far. We have really been encouraged by so many of you. To be honest we had no idea if anyone would even be reading our posts. lol We just hope to show other IC'ers you aren't alone and to bring awareness to everyone else.

Goodnight. <3

Sunday, April 25, 2010


Hey everyone. We want to thank you for taking the time to read our blog. We started this blog because IC is very important to us as I suffer from this terrible incurable condition and my husband is right there by my side going through all of this with me. We hope to expand awareness for this painful condition, and help people get a better understanding of what it is to live with IC.

Interstitial Cystitis is a very painful condition of the bladder. IC causes the bladder to be severely inflamed hence it's name. When the bladder fills up with urine it causes to crack the bladder walls causing it to bleed and make it more irritated and inflamed. IC also causes burning sensation, pelvic pain, pressure, urinary frequency and/or urgency, vulvadynia, migraines, irritable bowel syndrome, systemic lupus erythematous, allergies, endometriosis, and even fibromyalgia. Can you believe one organ can cause so many problems?

More than 4 million people in the US alone suffer from IC and another estimated 1 out of 77 may have IC. Women are 10 times more likely to have IC than men. They do not know why. Even though so many people suffer from this incurable condition hardly anyone knows about it and I'm not just talking about you and I, I'm also talking about the medical field. There are two great websites on IC you should visit. The first is IC Help and the second is the IC Network. We really encourage you to check both of those out and better familiarize yourself with IC.

Both Rich and I will be posting on here about what we struggle with and how we deal with IC in our family. <3