Tuesday, October 9, 2012

I came a cross this today, and thought I would share it.  

The Psychological Effects Of IC
Pay Attention!! 5 minutes out of your day won't hurt you, but could help someone else!!
Although IC is a physiological disease, the effects are emotional. The pain of IC automatically induces an emotional response. In the early 90's, Naomi McCormick, Ph.D., wrote in a joint article with pain specialist Daniel Brookoff, M.D., "It is nearly impossible for an IC patient to be emotionally neutral about pain." The pain of IC is carried to the center of the brain that carries emotion, and because IC affects an internal organ (the bladder) it is considered visceral pain. Visceral pain sends messages to the part of the brain called the limbic system, which regulates arousal and emotion. The messages from the bladder pain can make a patient feel upset, emotional and depressed as a result.

Unfortunately, the type of behavior that IC pain sets off is similar to the type of behavior seen in patients with post-traumatic stress syndrome, especially those who have been sexually abused. IC patients may be seen as emotionally laden victims of a traumatic experience demonstrating hyper-vigilant behavior (the need to be on guard against harm), instead of a person in need of medication to calm the unsettling symptoms of interstitial cystitis. However, it's not uncommon for IC patients to experience their first symptoms of IC during or after a stressful event. Perhaps this has to do with a "genetic blueprint," mentioned below.

Jay A. Goldstein, M.D., explained in an early Fibromyalgia Network newsletter how patients (fibromyalgia and chronic fatigue syndrome) are born with a genetic blueprint. He explained that a genetically predisposed individual may be "overtaxed" and "depleted" of important neuro-hormonal transmitting substances, and may develop her/his illness during stressful times. Goldstein believes that "this might explain why most patients develop their illness during situations of increased environmental stressors of various types." These individuals may not have what it takes chemically to fight infections, over-exertion and trauma.

We Are "Copers"

Although stress may not always be the trigger for IC, the stress and emotional impact caused by IC symptoms is ongoing. Most of us must deal with awareness in our bladders every day. We cannot leave our bladders with baby sitters while we go out to run errands, go to our jobs, go out to dinner or on vacation. Having IC is like having the responsibility of a baby for the rest of our lives, 24 hours a day. We have to take care of and pay attention to the baby, or the baby can make our lives miserable and wear us down. The baby likes schedules, lots of sleep, regular meals and a special diet. The baby needs to feel safe and secure at all times.

IC is a daily responsibility. People without IC usually have the benefit of knowing that their stressful responsibilities have an end in sight. For instance, jobs can be changed, children will grow-up, parents, in need of care, will sadly pass away at some point. IC, as far as we know at this time, isn't going to grow up and leave, and we can't really leave it (yet!). Although IC expresses symptoms and anxiety differently in each patient, it is not a situational stress that will resolve in time. And, even though most of us build a certain amount of tolerance to the everyday bladder sensitivity (not the painful flare-ups), we still have to place our bladder needs first.

The world with IC can become very small. And, problems can seem too big to overcome. Sometimes the limitations can make us feel stuck, sometimes with no hope for the future. This is why it is absolutely necessary to take a good look at ourselves and recognize our successes, and the people in our lives who truly care about and admire us. Remember, we are "copers" and we have what is called psychological resilience. If others could just experience five minutes of a painful IC flare-up we would be considered heroes.

Not sure who posted this originally but I stole it cuz it's perfect for the current situation.

Tuesday, November 15, 2011

Been a while!

It's been a while since I've posted on here.  So here is an update.  I had some treatments done.  Not fun at all.  After the 6th and final treatment I had about 4-5 weeks that pain level was down to about a 4!!  That was the least amount of pain I had been in for a long time.  About a week or so ago, it all came back!!  It's hard to realize that nothing will get rid of this and that I don't have many other options to help the pain.  The only thing I can do is try and deal with it as best I can, and to try and do what I can.   I'm so thankful for my loving husband, who is still here for me.  I have read many stories of women who have IC and have had their spouse leave them, because of them needing to lay down and not be able to live a full life.  That's so sad to me.  I understand that it's hard for someone who doesn't know what constant pain to this degree is like.

Monday, September 26, 2011

Some days are harder than others

It's hard to not feel so guilty when you can't get up and clean the house!  This is my only job and I can't even do it!  I've read a couple articles on this disease and have to kind of laugh when I read that it ONLY causes pain.  Then the next paragraph says that it's a very debilitating disease.  I guess if it won't kill you then it's no big deal.  But it does take your life.  This isn't something I wanted to have in my life.  When you can't go do things with your family, are child it makes it very hard.  You feel so guilty, and at times like a bad mother and wife.  I must say that as hard as it is on me it's also very hard on my family, and I'm very lucky that they are still here.  Some people don't understand or can't understand living in pain.  I've had some say that I'm so lazy, and it hurts because I would love to be able to do anything!  I know it's sometimes hard to understand things you can't see.  I always here but you look good.  Like I said you can't see the insides of people to see what the pain or disease is.  I'm very thankful for the family and the few friends that do understand and are still here for me.  I've had many "friends" go away because they don't understand.  Some think your making stuff up, to get attention.  I wish I was making it up so I didn't really have the pain!  I've even had people ask why do you keep going in and having surgeries, and don't think you need them are you addicted to them?  What? First off Dr.'s don't and won't do a surgery if you don't need it.  And since every time I have one they find something, then I guess I did need it.   I would much rather not have a surgery, but if there is even a 5% chance of being out of pain I'm in!
Any way enough of that!  Thanks to all have stayed and supported me.

Saturday, September 17, 2011

What IC looks like

           Bladder with IC                                          Bladder without IC

Friday, September 16, 2011

Getting Diagnosed

I'm not sure just how long I have had IC.  I was diagnosed in Dec. of 2010 after a second Hydrodistention.  The first one was 6 months prior.  The disease had spread alot in those 6 months.  Now before this I had been in and out of Doctor's offices, Specialists, Pain Management, Hospitals, and had 17 surgeries.  This wasn't my first chronic pain issue.  I was diagnosed with Endometriosis at the age of 16.  I had surgeries to remove the Endo. a few times.  I was told I didn't have much of a chance to be a Mother.  I dealt with the pain of Endo. which was mostly a week a month (period time).  At the age of 26 I had a wonderful surprise when I found out I was pregnant!  Now this was a very painful, and hard pregnancy.  I went into labor at 21 weeks.  Luckily they were able to stop labor with medications.  I was put on bed rest.  I ended up in the hospital at least once a week some times more, in labor and getting shots to stop the labor.  Fortunately I never dilated, and 2 weeks after my due date I gave birth with an emergency C-section to a very healthy baby girl.  As the year after she was born my pain from the Endo. got worse and worse.  I was laying on the couch with a heating pad more and more.  I ended up going in and getting it removed again.  It didn't help at all.  I didn't know what to do.  I had this wonderful baby to take care of and not being able to do much at all.  After talking with my Dr. he tells me I should have a hysterectomy.  The first thing I thought was but I want another baby.  He told me I most likely wouldn't be able to carry another one, and that it would take all the pain away.  I agreed.  I needed to take care of the one I had, who needed her Mommy to be able to run around and play with her.  The year and a half after my full hysterectomy I felt so good no pain, no period!  I had my life back!  After that year and a half I had all this pain coming back.  What is going on?  I went to the Dr. and had another surgery to see what was going on.  No Endo. but you have massive adhesion's.  That is why your in so much pain he says. It kept getting worse, and I kept having surgeries to remove them.  This went on up until a year ago.  In and out of Dr. after Dr. and in pain management every month to get my pain meds.  They all left it at the fact that it was "just" the adhesion's.  I find a Dr. that I really liked, who didn't think I just wanted the pain meds. didn't think I was making it up or it was all in my head.  As I had heard over and over.  She asked me on one appointment "have you seen a urologist?"  No I have not.  She says I think you may have Interstitial Cystitis.  I go meet with him and he says yes it does sound like it.  I had a hydrodistention done.  When I woke up he said yes you have IC.  He says this procedure should help for about 6 months.  A week later I was feeling better.  Still had a lot of pain, but I was able to get out of bed, and even start helping at my daughters school.  Fast forward 6 months, it started getting worse and worse and I was back in bed.  I called him up and went in for another hydrodistention. This time he says that my bladder is a lot worse inside.  This one doesn't work very well.  That was Dec. of 2010.  He reminds me that there is no cure, no straight forward treatment that will fix it.  Last month I went back in.  I can't take having this much pain any more!  He does tell me well there is another treatment we can try. It's called bladder instillation.  I have to go in once a week, for 6 weeks.  The put some meds. into the bladder with a catheter.  The first 2 treatments don't help, the 2nd one made it worse.  I had the 3rd treatment yesterday, and it has helped so much!  My pain level has gone from 7-9 to a 2-3.  I know that it's not a guarantee and that it won't last for ever, but I'm glad to  have any hour, days, or maybe even weeks (if I'm lucky). 
It has been a very difficult journey to finally finding out what was wrong with me.  And it's hard to know that it's a disease that has no cure, and will get worse, but if there is something that will at least give me some very good days I'll take them.  

Interstitial Cystitis

Interstitial cystitis or Bladder pain syndrome/interstitial cystitis (commonly abbreviated to "BPS/IC") is a chronic, oftentimes severely debilitating disease of the urinary bladder.[1] Of unknown cause, it is characterised by: pain associated with the bladder, pain associated with urination (dysuria), urinary frequency (as often as every 10 minutes), urgency, and/or pressure in the bladder and/or pelvis.[2]
The disease has a profound impact on quality of life.[3] A Harvard University study concluded, "the impact of interstitial cystitis on quality of life is severe and debilitating".[4] A Harvard Medical School guide states that the quality of life of interstitial cystitis patients resembles that of a person on kidney dialysis or suffering from chronic cancer pain.[5] The condition is officially recognized as a disability