Hardest Two Weeks

[aprilchen]

These have been the hardest two weeks of my entire life, I think, or at least it seems so now. For four years, we did not know where my chronic pelvic and back pain was coming from and have the Interstitial Cystitis diagnosis. Somehow, I thought things would be better once we knew what this was, but it seems they have gotten worse.
Ever since the procedure to diagnose this, my bladder has decided to function whenever it feels like it. So, now instead of spending these precious days with my husband and family, I am stuck in the hospital on a catheter. It’s really SO depressing. The worst part of it all is that as of yet, there IS NO CURE for this disease.
It means the bladder wall/lining has broken down so much or is irritated so much that ANYTIME urine hits it (when any urine gets in there), it burns, hurts and is just plain uncomfortable. To add to all this—this week, I became dehydrated and have two positive blood cultures for some kind of septic bacteria in the blood. It almost makes me wonder, what the heck is going to happen next.
Please keep Aaron, our families and me in your prayers. Aaron has been wonderful. I could not have prayed for a better husband in this time of need or anytime. He is ALWAYS there for me, regardless of how tired he is or how stressed out he becomes.
We also need prayer for the Air Force Force-Shaping Board. They are convening and will announce the 39% of people that will be cut in Aaron’s class year from the Air Force. Yes, I do hate the TDY’s and when he’s away, but it IS a secure job, at least it was. I, personally, don’t feel that Aaron will get cut because of his variety of experience (two trips to Afghanistan, one to Japan, Korea and one to California). All of these trips were for essential communication systems that needed correction. We both know that if he is cut, it was in God’s plan and are trying to accept it. We also know that God will provide for us and open another door for Aaron’s career if he closes this one.
We just ask for prayer on this and my health. I had wanted to finish my master’s degree, but because of illness and this new diagnosis being out of control, I have had to drop out yet again. It seems like I have been *trying* to go to school at least half my life or longer. Thank you for all your prayers.

[ihurttoo]

April,

I am so sorry that you are sick and in the hospital. :( I hope that you get to feeling better soon. Hopefully, once the antibiotics kick in, you will get to feeling better. I am sending up prayers for you, Aaron, and your families. I hope things improve soon. Many hugs, Amy

[leelee88]

April, I am so sorry you are going through such a rough time... I have been there so I know how you are feeling..I will keep you and your husband in my thoughts and prayers..

I see where you are taking Pyridium Plus, I could not take it, because I could not void at all while I was on it...You might ask your doctor about changing it to just Pyridium, It sure made a differance with me...
Good luck and God Bless both of you...

Ronda

[aprilmae]

From one April to another!

You and your hubby are in my prayers! I am so glad you are blessed with such a caring and supportive spouse. I know the catheter thing is miserable and I hope they are able to get things better soon so you can at least get rid of that!

As for school - your health is number 1. Do not beat yourself up about school - I am attempting a masters for the 3rd time this semester and won't know until the end in a year or so if I will finish. There is no clock on education.

I have read a lot of your posts and I think you are an amazing woman. I am so glad you found us here on the boards!

The military is such an interesting phenomenon for lack of a better way to put it. I will also be praying about that situation too.

Hope you get better soon!

Hugs,
April

[GriffsMommy]

April,
I am sorry that you are having such a tough time. I hope that you feel better soon and I will keep yourself and your husband in my thoughts :pray:

[Sarojini]

April -- I'm wishing you the best for a speedy recovery... and I'm sorry you had to go through all of this!

[aprilchen]

Hi,

Thank you all so much for your prayers and responses. Prayer is really all that I believe can help at this point. To answer the question about regular Pyridium and Pyridium Plus, I had NO relief from the regular and the PLUS has been good. I also take Percocet and Valium as needed. The Uro just started me on Enablex. Does anyone have experience with this one?

This board is wonderful. Without it, I would feel SO alone. It really is amazing to learn how many people actually live each day in pain with IC.

What is interesting to me is that for some this condition is completely debilitating and for others, they work full-time and live with the pain. Maybe it's different for everyone. I just know that I do not have a high tolerance for pain.

Thanks again.

[aprilchen]

As for school - your health is number 1. Do not beat yourself up about school - I am attempting a masters for the 3rd time this semester and won't know until the end in a year or so if I will finish. There is no clock on education.

I have read a lot of your posts and I think you are an amazing woman. I am so glad you found us here on the boards!

The military is such an interesting phenomenon for lack of a better way to put it. I will also be praying about that situation too.


Hey April,

Thanks. Wow, there's another April who has IC too. Now, I really don't feel so alone. Do you work or stay home? If so, how do you handle working with this disease? Now, I agree with the thing you said about school because everytime I get stressed out, I have a flare. I have learned that stress can actually cause IC to be worse. Thanks for the "amazing" woman comment. You just made my day. Right now, I am just so depressed because I am in the hospital and don't know when I get to go home. And, today is mine and Aaron's six month anniversary. Instead, we won't even be able to make love EVEN IF I get to go home because of all the soreness from the catheter. They did just take that out and are working with me on re-training my bladder function.

Thanks again to everyone.

[aprilmae]

April,

I quit working full time June 2006. I tutor part time to make some extra money. My boyfriend is helping me so that I can go back to school. I am taking 9 hours - 6 online and 3 class hours. The stress really got to me over the weekend - I had a meltdown because of all of the projects. However, my boyfriend just reassured me that I could do it and if I need to that it is okay to cut back on the classes. I stay at home all day currently. It allows me to rest when I need it and to work from the comfort of my favorite chair.

Intimacy is very difficult at times with this disease. However, there are ways to foster that intimate feeling without the act of making love. I am sure it will make Aaron's day just for you to be home. Also, just let him hold you and spend time talking to him or just being quiet together. Kissing is always fun too. Don't focus on the not being able to make love part, hard to do I know, but just tell yourself that you are saving that for a day when you can make the most of it!

Sending lots of hugs,

April

[ICNDonna]

I'm sending well wishes and will keep you my my prayers.

Donna

[Bessie]

Keeping you in my prayers :pray:
I hope you get to come home soon and Happy 6 month Anniversary.

[kuntrygurl78]

I just read your story, and my heart aches for you. Im getting married in September to the most wonderful man in the world. We are so lucky to have such great men in our lives.

I just wanted to let you know that there are some of us out here who dont have daily pain. I only have a few triggers, so as long as I stay away from those, Im in pretty good shape. I have one of the most mild cases on the board. If it wasnt for a good doc, I may have gone years without a diagnosis, and who knows how bad it wouldve gotten by that point.

Stress tends to be one of my biggest trigger. So I do whatever I can to let the small things roll off my back. Ive also found Im a happier person because of this. So in a way, IC has been good for me.

Sending you healing thoughts.

PS My fiance was raised in Biloxi! We went down there 10 months before Katrina hit. It was wonderful down there. The people were so nice, and the area is so beautiful! I cant wait to go back.

[SandyRN]

Just saw your post and am sending you :pray: and well wishes for pain free days and nights. I'm sorry you're going through so much right now. I'm also sorry that you have so much stress regarding your husband's job. Who would of thought that they would dismiss so many of our armed forces????? I just can't understand why they would even THINK of that considering the state of our world these days.

:grouphug: and let us know how you're doing!

[Kara29]

Dear April,

I'm sorry that you are so sick and in the Hospital on your 6 month Anniversary!

I'm sorry I didn't get back to you. My Mom is very sick and she doesn't live near me so I am not home. I left shortly after I talked with you. I will have to PM you my cell phone if you would like to talk.

The things that are happening to you and Aaron have to feel so frustrating. I'm very glad that you have each other to make it through this. It makes such a difference to have a loving spouse. I can tell so very much that you absolutely love him unconditionally. I believe you will get through this together in time and that you will be able to celebrate you new life together.

Although there in so cure for IC. There are so many great treatments for you to eventually try. My hope is that as soon as you get to your IC Specialist, that you will be able to start trying some of those treatments! Catching IC early is one way to have some of those treatments to be effective in the long run. There are lots of people who go on to live awesome lives, even with IC. One HUGE example is Jill O. The Founder and President of this whole entire network where you will find the greatest support! Her story is uplifting and gives you an idea of what can be accomplished with IC. http://www.ic-network.com/patientstories/jill.html

Each and everyone else on here is fighting with you and they all have their own stories of how courageous and full of strength they are! We may differ in regards to what stages we fall under and what treatments we use. It sounds like You are in a real down spot with it now and it feels like all of the cards are stacked against you. When you are so sick and in pain, it's hard to see a possible end to the suffering.

I will be thinking of you as you work on re-starting your bladder. Aaron must know how much you love him by how hard you are fighting to get better! I will be thinking of his career as well. Somehow things have a way of working out. Your faith seems so strong and that is wonderful!

We are all with you April and Aaron! You will find some wonderful support and information on how to learn to cope with IC and how to get around some of its obstacles.

The ICN Patent Handbook is a great place to start! They even have a section on Sex. Here is one of the topics on that board: http://www.ic-network.com/handbook/index.html

There are so many wonderful people here who have been so kind to share their knowledge and wisdom. I hope that you will find comfort along the way.

Warm and Healing Hugs to You and Aaron!

Kara

[Babs RN]

April,
I am sorry you are so sick. Like Amy, I hope once the antibiotics kick in you will feel better. I know how ever changing and stressful it is to be a military spouse and the fear of having to leave military life--while it has it's downsides, it is also a pretty decent protective net. Please PM me if you need to talk. I have been in so many spots that you have been in and know your emotions. Hang in there.

Hugs,
Barb:hi:

[aprilchen]

Hi,

Yeah, Biloxi is not good looking at this point at all. They have not really made a great deal of progress since Katrina...but it's a slow process. Aaron and I hope that with him working on 1LT salary and my little substitute teaching, we are able to pay off student loans, buy a house soon and have a baby within the next couple years. .

Thank you for sending your thoughts. My husband and I have the best support system in the world! Our families live really close and we will be moving in the near future with the Air Force or for Aaron to go to graduate school at a more competitive engineering school (he is an Electrical Engineer in the Air Force).

We were talking and it seems like we, as a couple, have been through more than most do their entire lives. Read on:

1. August 2005--Hurricane Katrina, I had just met Aaron eharmony.com and we had two dates together before the storm. Then, the Air Force made them leave without choice so they did not remain for the hurricane unless they were on the control center. That year, he was not.

2. October 2005--I was hospitalized with a severe case of pyelonephritis. That is a complicated kidney infection. I lived about 70 miles away from where Aaron was living and we frequently visited each other, had dinner and then had to go back home. I lived at that time with my grandparents because I could not work full-time because of being ill all the time. During Aaron's trip from Biloxi to Mobile, AL where I was hospitalized, he totaled his car. I thank God that he was ok and walked away from the accident. Yeah, this took a little while to get resolved, but he now has a nice 2003 CRV with all the perks...leather seats, sun roof, etc.

3. November-December 2005: Right after Thanksgiving, Aaron was deployed to Afghanistan and we only talked on the phone maybe three times a week because access to the DSN phones was so limited. Every chance he got, he called me or his mother just to say I love you. This was hard because even though what he does never really puts him at the front lines, it still has more danger than being here in the U.S. His job when he was over there was to fix a communication problem on base. Remarkably, we praised God because Aaron came home on Christmas Eve and we DID NOT miss our first Christmas together.

4. February 14, 2006: My grandfather (who is like a father to me) had a stroke while he was on a business trip to Memphis, TN. Thank God that he's mostly back to his full-self now (he retired and is working part-time just because he hates sitting around)...not because they MUST have the money or anything.

5. May 2006: Aaron underwent surgery for a deviated septum. He had some serious complications. Firstly, he bled ALOT more than most do with this surgery. We called the ambulance twice for him to be taken to the ER with a nosebleed so bad that we could NOT stop it. The third time it happened, they admitted Aaron through the emergency room to the hospital. That third time, they had to cauterize a vein because it burst. He was severely anemic and I stayed at the hospital for three straight days while he was on Morphine for the pain. They had packing up his nose (he refers to it as a giant tampon) and he had to wear it four days.

6. December 2006-Again, we were separated because Aaron got deployed to Afghanistan to fix a problem over there with the communications infrastructure. The orders were written for 120 days and there were no promises he would make it home before April 2007. Surprisingly, the team (which I am bragging here--that my husband led) solved the problem in less than 24 hours. They were then sent to do some "other" assignment that really was not in the definition of an RDF engineer. So, I prayed and prayed and everyone around us did also. He arrived back to Biloxi where we live on December 22 and made it home for Christmas and our first set of holidays being married. I don't think this deployment would have been so bad except that where they were located, there was ONE phone that sometimes worked...and everyone wanted to call, so I heard from him once a week...MAYBE. It was the most miserable two weeks of my life, I think. I worried constantly because I got no email and no phone calls. I began to worry that some Air Force people would show up and tell me something terrible had happened to him. But, thank God he came back completely fine, tired and missing me like crazy.

7. January 2007: I was diagnosed with IC this day after having a bladder cystoscope and hydrodistention. I read for some people that this is therapeutic, but for others it made theirs worse. I think that's what it did to me. My pain specialist switched my Lortab to Percocet and they work much better. I am now in the hospital with a staph related infection in the Cocci family. I am getting good pain relief, at least. I'm getting 1-2 Percocet 7.5mg every three to four hours and on top of that, every four hours I am getting an I.V. push of Demerol-50mg and Phenergan-25mg. Aaron and I are really glad we know what I have is something and it's real. For a while, I was beginning to think I was crazy and the pain was all in my head.

Anyway, please keep Aaron Chen and me in your prayers. He is the MOST WONDERFUL husband alive, but I know that a person can only take SO much before that makes it impossible to reverse. He says he's happy in our marriage and is never going anywhere. Forgive my insecurities because Aaron told me that if he could never make love with me again, he would still stay married. He is that wonderful of a husband.

Hope everything is ok in your area.
*hugs*