Is There Another IC Patient In My House?

Wednesday night I hosted my monthly meetup group for people with IC and chronic pain at my house. Last month one woman showed up, this month another one joined us as well. We dealt with the most important things first: food and getting comfortable. Once the food was layed out and our we were settled in a comfortable spot, sans shoes, we got started, It was an interesting triangle. The lady who was also at the last meeting has fibromyalgia. I have IC. The lady who I’ll call Jennifer, has both IC and fibromyalgia. I’m sure by the end of the night Jennifer was talked out after answering questions and discussing her conditions with each of us. The snacks were good and there was never a quiet moment. Now that’s what I call a good get-together!

Part of me wanted to cry with joy when I met Jennifer.There are reportedly millions of people with these disease yet until Wednesday night I’ve never met anyone who has it face to face. I’ve met several wonderful people who have IC through blogging but meeting this lady last night somehow made my condition more real to me. All three of us looked remarkably alike. Long lost relatives? Nope. We were just three women who look fine on the outside while suffering on the inside.

Jennifer has had many chronic overlapping conditions for years but was diagnosed with IC only three years ago. Since I have only been diagnosed since June, I had a lot of questions for her. She had a lot of answers. Some I agreed with and others that I found puzzling or questionable. When she left, I was talking to my boyfriend about her. Well, not about her  per se, but about different things that she said. She made me question whether or not the path of care I’ve chosen (certain doctors, physical therapists, medications) is the path I really should be taking. I slept on it and the conclusion I finally came to is this: there is no right or wrong path with IC. You find a doctor you communicate well with, a physical therapist that you trust, try out medications to see what works for your body, and pick and choose procedures after weighing the pros and the cons. What works for Jennifer may or may not work for me. She may not get along with my physical therapist but I may find that I really like her. As long as I’m progressing towards pain relief, I’m doing well.

As I mentioned earlier, Jennifer is much further along in her journey with IC than I am. She has tried different things and found what works for her-for now anyway. Jennifer is also what I’d call….new agey for lack of a better description. She reads books by Deepak Chopra and Andrew Weil and can repeat phrases from their books like they were her own. Do I want to read those books and repeat someone else’s mantras. No, I don’t. Is it wrong that Jennifer finds some sort of peace in doing this? No. But it’s not for me. I don’t need a health guru to bring me peace of heart and mind, all I need is God. I struggled for over 5 years to find a correct diagnosis. Thinking back to Wednesday night I realized something amazing about myself. I’m no longer a follower. Years ago, before I learned to be my own advocate, I would have taken the information Jennifer gave me as right without question because if she’s had the condition longer, surely she must know whats best right? Now I know that such thinking isn’t always correct. I can take what makes sense to me from her wealth of knowledge and use it for my own greater good. I can research the information that I have questions about and decide for my self if it’s something that will be good for me. Having to fight for doctors to take me seriously and continue with that battle to get a diagnosis that made sense to me has made me wiser, I believe.

It was good to talk with Jennifer. It was good to mentally note our similarities as well as our differences. More importantly, it was good to be in the same room with someone who knew exactly how I felt. I’ve never had that before. I’m hoping that the knowledge I glean from her, the knowledge that’s right for me, will be able to help me further my recovery. It was wonderful to be in a room with two other ladies and feel support and understanding. After this meeting, as with the last one, I felt refreshed and renewed. I felt hopeful.

 

My Body is Tired And So Is My Mind

My body is tired and so is my mind. I’m tired of being sick. I’m tired of doing a body check each morning when I wake up to see if I’m well enough to function each day. It seems like I get one issue temporarily taken care of and another issue appears.These past two weeks are a good example. October 14th I had a hydrodistention to hopefully relieve some of my IC symptoms. I knew going into it that I would most likely have 1-2 weeks of a flare up afterward which did in fact happen. I woke up on October 24th feeling better than I had in months. I even blogged about it (A Goodnight’s Sleep). The next day I woke up and wasn’t experiencing any bladder issues but had a terrible headache for the greater part of the day. Wednesday I woke up and my headache was gone and I wasn’t experiencing bladder pain, but I was having IBS issues due to the over the counter pain meds I’d used the day before to try and combat the headache. By Thursday night, my IC was flaring up and I had to do a bladder instillation at home. The flare continued to rear it’s ugly head and on Sunday I had to do another bladder instillation. Monday I continued to not feel well which led to Tuesday night’s feeling of being on fire. Today I woke up in pain. Was it a flare up? No. Was it a migraine? No. IBS? No. Today my pain was related to female issues which may or may not be ovarian cysts. I had a partial hysterectomy in 2008, leaving my ovaries intact to avoid taking hormones and pushing my body into instant menopause. While I no longer suffer through terrible periods, I do experience pain when I ovulate. It seems to happen every other month but is sometimes unpredictable. I do not have the proper pain meds to help me through this. The pain meds I do have barely touch the pain. The pain, for lack of a better way to describe it, feels like labor pains waxing and waning throughout the day. I made it through the day but I cannot tell you how. There was little to nothing I could do to find relief. A hot bath helped for a little while but the pain returned. Ditto the heating pad. I couldn’t find a comfortable position to lay in and sleep escaped me.

My body is tired and so is my mind. I’m tired of feeling like I’m failing in every area of my life. Today I was reduced to picking my son up from school in my pajamas because I couldn’t be bothered to get dressed. Thankfully it looks more like a sweatsuit than pajamas, however it was the first thing he commented on when he got in the car. I think I might have brushed my teeth and hair today but I can’t be sure. When we got home, I cuddled up to my heating pad and left him to do his homework on his own. I think he had a good day at school but I didn’t feel much like playing 20 questions and he seemed fine. I’m clearly Mother of the Year. I was in bed the rest of the night until about an hour ago when my boyfriend came to bed. He’s another one I feel like I’m failing. He deserves someone who is actually normal. Someone who gets the occasional cold or flu but is healthy for the most part. Tonight we talked for about 15 minutes while laying in bed and we didn’t even see each others face. I couldn’t tell you what he and my son had for dinner or if they even ate. I can tell you that he finished the laundry as I see it all laid out nicely over the back of the couch. Laundry that was in the washer and dryer all day that I couldn’t be bothered to do. I can’t tell you the last time I had a normal conversation with either of my parents. All phone calls and visits seem to revolve around poor health-either mine or theirs. I’m failing myself on so many levels too. I’ve tried to be kinder to myself but as you know, that’s not always easy. I was enrolled in an online algebra class and held a steady “D” average for the first four weeks of class but had to drop it because of health issues. Math is the only thing holding me back from getting a college degree. I’m stuck in a job that pays well and is secure but after almost ten years I’m burnt out and would like to have a different career. I can’t change jobs even if I could find one that paid as well because I obviously need the medical benefits as well as the FMLA.

My body is tired and so is my mind. There’s a low grade depression that accompanies chronic pain. There are days when I wish I had an on-call counselor to talk me through it all-to whisper reassuring words in my ear. Through my medical insurance at work there is a health program wherein if we took a health assessment we will have slightly lower rates for six months. I need money like everyone else so I took the health assessment. Afterwards, I had to fill out an online survey, which I did as part of the agreement to lower my rates. Little did I know, that doing so would give me the opportunity to have my very own health coach. She’s never bothered to call me but did send me an email asking the same health assessment questions and a few more questions about my medical history. I was really looking for help so I told her about my overlapping conditions and how much pain I am in on a daily basis, my low grade depression, and that I fell off the non-smoking wagon although I try and do better each day. Out of all the things I told her I needed help with or needed help dealing with, which do you think she zeroed in on? Smoking. Have I set a date to quit. I was so disgusted with her I didn’t even reply. I wanted to write back and tell her that if I could get rid of or lower the frequency of my other issues, perhaps I wouldn’t find the need to smoke. I give up. Yes, smoking is bad. It’s especially bad for those with IC issues, however some days it’s the only way to make it through the day.

My body is tired and so is my mind. I’m sure I have adrenal fatigue. Having chronic pain has really taken it’s toll on both my body and mind. I rarely feel rested. I crave sugar all the damn time-probably as a quick pick me up since I can’t have caffeine. I’m worn out. Perhaps my body would react differently if it could catch a break. There’s no down time. Even the one day last month when I felt really good part of me was worrying about what the next minute, next hour, next day would bring. I know I wasn’t always this way. I used to be pretty happy go lucky with the occasional migraine thrown in to keep my honest. Then gradually things started progressing to where I am today. I can’t even contribute my diminished health to old age as I’m only 38. I’m not sure I can handle old age if my body is already beginning to give up on me.

My body is tired and so is my mind. I’m tired of of being on this roller coaster of pain. It makes me want to stomp my feet and yell ‘It’s not fair!’. It really isn’t fair. It’s not fair that in the past month alone I’ve had one really good no pain at all day. It’s not fair that once I get one issue under control another issue appears. It’s not fair that my family is “short changed” due my health issues. It’s not fair that I’m complaining like I am as I know there are those who are worse off than I am. People with a lot more pain and many, many more issues. People who have suffered from chronic pain for many, many more years than I have. People who even perhaps have terminal illness. My heart goes out to you. It really does.

My body is tired and so is my mind…