Thursday, April 19, 2012

I'm So Sorry...Not.

This is a note to all the haters in the world. All the mean, self-centered people who think bad things can never happen to them. All the uneducated, self-absorbed losers who always think their situations are the worst and have ZERO compassion to what anyone else goes through.

I'm sorry. I am sorry I don't live up to your high standards. I am sorry that I am tired almost all of the time. I am sorry that my version of life doesn't meet your definition of what life should be.

Do you think I really like taking medications all of the time? Do you think I like giving up money that could be spent on fun things to buy these medications? Do you think I like having to cancel on friends b/c I have a really bad flare? Well, I don't. I actually hate it, but I accept it. I accept it because I have no choice. IC has no cure, so I need to find a way to face reality and live with it. 

Just because you see me smiling, laughing or enjoying something doesn't mean that you should suddenly expect me to run the Boston Marathon or be able to work 90 hours a week. My body has limits and I know these limits. I shouldn't have to explain myself to you or anyone else. I am allowed to have "moments", everybody is. I have moments when I laugh at a joke or enjoy a movie or have fun at lunch with a friend. No one can be miserable all the time. When you see me enjoy something it doesn't mean that I am cured. You don't see me when ten minutes or ten hours later I am crying in pain. IC is a mysterious disease which not even doctors can fully comprehend so don't treat yourself like an expert just because you have met me or another IC patient once. 

Life with IC is a painful life. We know how to put smiles on our faces when we have to. We do the tasks we need to take care of family, friends and children so just because you see us doing something doesn't mean that we are not in horrible pain while we are doing it. If you are going to judge an IC patient maybe you should look in the mirror and judge yourself first. Your life is not perfect.

So please, keep your opinions about me and how I should live to yourself. I can assure you that me and every other IC patient out there are doing the best we can to put one foot in front of the other day after day. Some of us can work full-time, some of us can't. Some of us can eat certain foods, some of us can't. Some of us can exercise, some of us can't---the list goes on. But no matter what we are strong and we never stop trying to be the best person we can be for ourselves, our families and our friends.

I am sorry I don't fit into your perfect world. Oh, wait, I'm not.

Sunday, April 8, 2012

What Doesn't Kill You Makes You Stronger (?)

They say what doesn't kill you makes you stronger. I guess in some ways that saying is correct. As I have mentioned in a previous post my husband has been very ill and was even in a coma at one point. I went through hell with hospital visits, fighting with doctors, doing paper work, praying for my husband, crying, remembering to paying bills on time, being told that my husband might not make it etc. I am proud to say that now my husband is HOME. He still has a road ahead. We have at home nurses, PT and OT visiting regularly, but he is alive and will eventually make a full recovery. 


Dealing with that situation and now being a home caregiver has made me stronger in some ways. It made me realize that I am a brave woman who can survive almost anything. I found courage I never knew I had. I fought with all my might for the man I love and never gave up. It was hard, but it didn't kill me and it made me stronger in the sense that I now  know I am a brave, intelligent person with unimaginable dedication. 


However, since I suffer from IC it did not make me stronger in a physical sense. My body is weak. The hospital staff cared very little about my health situation b/c I was not their patient. I got close with some nurses that did care, but many doctors and some other people couldn't have cared less if I died on the floor of the hospital room b/c it was not their responsibility to look after me. As the stress got worse and my husband's situation went on my frequency got worse. My retention became awful and we won't even go into the  horror of the spike in pain levels. I also suffer from generalized anxiety disorder and as you can guess that showed it's ugly head many times during the situation.


 I ignored my body's desire for rest and did what I had to do to save my husband. When I went to see my pain management doctor a few weeks ago he looked me up an down. There I stood pale as a ghost with bags under my eyes and shaking hands. He had seen me a month and a half before when I had actually made a few positive improvements. He knew about my husband and the situation and was very compassionate originally about what was going on.


"What have they done to you?" he uttered. He was shocked by how bad I was doing. Usually my pain from IC is invisible but I had visible signs that my health was not good. 


I told him about the hours I was spending at the hospital, about how I had not taken a day off in over 50 days and about a few other horrific situations that had occurred that I needed to attend to. He was really upset. I am his patient and he wants to see me doing the best I can with a chronic illness, not walking in looking like someone who has never been treated before. He told me that I needed to start being somewhat selfish in my choices. He said that if I didn't I wouldn't be able to take care of myself or my husband. It was hard but I finally did end up taking two days off. Yes, two days out of over 60. One day I attempted to rest and the other was not a real day off b/c I spent it scrubbing the house for my husband's homecoming.


Now here I sit in the present. Having my husband home is obviously wonderful b/c I missed him so much. I do need to still do a lot for him (he can't drive), he does limited walking etc. but in between tasks I do get to rest a little. Only now I am realizing the true damage I have done to my body. I feel so sick from IC almost every single day. My muscles are weak. I am constantly exhausted both mentally and physically and also have symptoms flaring that resemble Fibromyalgia or Chronic Fatigue Syndrome. Right before my husband got sick my Uro told me I should see a Rheumatologist b/c some of my symptoms were beyond the scope of IC and he was concerned I may have some other illnesses too. I have not had time yet to have my appointment. 


I love my husband and if I had to do it again I would have done it all the same. He needed me 100% to fight for him and I didn't care what hurdles were in the way. Many people believe some of the actions I took saved his life. I am so happy he is home safe with me where he belongs. Nonetheless, I am scared right now about my health and my IC symptoms. He is scared too and wants to see me improve. Hopefully my husband and I can work together and both of our health issues will improve.


They say what doesn't kill you makes you stronger, but when you have IC, sometimes what doesn't kill you makes you weaker (physically speaking at least).

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