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doodah2
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Name: Doodah
Birthday: 1/1/1902
Interests: (In no particular order) Reading, movies, Theology, writing, and music.
Expertise: Deductibles, Coinsurance and Copays...I'm not sure you could count Greek.
Occupation: Customer service/support
Industry: Medical
Message: message me
Member Since:
2/28/2004
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| I am posting this to help those who suffer with interstitial cystitis or any other chronic disease to know they are not alone. I am also posting this to help others know what their family members or friends feel on a day in day out basis who live with chronic conditions. I am sorry it is so long. I was going to delete part of the second note, but I decided not to.
The first excerpt is from an unnamed friend who also has IC It was very helpful to me.
"Life with IC is truly hard. I will not be one of those people who tells you to "keep your chin up," because I know what living with IC is like, and it is very hard to keep your chin up let alone your aching body. I hate IC. I hate what it does to people and how it changes their lives and their outlook on their lives. It destroys a lot of people, but don't let it destroy you. I'm trying really hard to not let it rip me to pieces either and that involves so many things: getting up to go to work 5 days a week, working an 8-10 hour day, taking care of my apartment, cooking, cleaning, being a wife, daughter, sister and aunt, taking classes at night for my job---all these things on top of having a horrifically painful disease.
I have lots of anger about having IC...frustration with the pain and not being able to do things the way I used to. I cry almost every day because that's the only way I can seem to calm myself or get the anxiety out. I feel very alone and scared and without hope. Things keep snowballing. And although I try to keep my faith, I often wonder why God is letting me go through this. Am I Job or something?! I just keep getting thrown under the bus, and it's not just me. It's all the ICer's, who have this horrible illness with pain worse than Stage 4 Renal failure except we don't die from it.
I so understand everything you are angry about. It's not fair. Sure, there are people with worse things than IC who are dying, but IC is the worse thing to me right now, and I have a right to be scared, tired, angry, annoyed, and jilted."
The second letter is posted from one of my sister-in-law's blogs. She did not write it, but I found it very moving. I have changed a few things so it would apply for IC.
"Dear Loved One,
Having Interstitial Cystitis means that I am in constant, chronic pain.
Most people don't understand much about this disease and its effects, and of those that think they know many are actually misinformed. In the spirit of informing those who wish to understand...
... These are the things that I would like you to understand about me before you judge me...
I am scared. I don't know what the future holds for me. Will I have this pain forever? Will I ever be able to run, play tennis, walk up several flights of stairs, drive long distances without being reminded of my IC? When I have kids will I be able to run after them or play with them without pain? If you find me being quiet and reflective, please don't think I am upset with you. I am trying to sort out my fears.
I am angry. IC has taken so much away from me. I can no longer do many of things I enjoy doing. I sometimes have difficulty just completing simple tasks. If I appear angry please understand it is IC I am angry with, not you.
Please understand that having IC doesn't mean I'm not still a human being. I have to spend most of my day being very careful about what I do, and if you visit I might not seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, work and my family and friends etc, and most of the time I'd still like to hear you talk about yours too.
Please don't assume you know what is best for me. IC has affected my physical being, not my mind. I am capable of making my own decisions. If I make the wrong decision, it is I who has to deal with the consequences. I still want to be part of the "gang." Please continue to invite me to participate in activities. I'll decide if I am capable of it. You may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts when you exclude me. Maybe I can't skate with everyone else but I can bring the hot "carob" chocolate and watch.
Please don't tell me you know how I feel. You don't. Don't offer me sympathy; I don't want your pity. But do offer me support and understanding, which I appreciate. I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue. Even on a good day I always feel like I have a bladder infection and am in pain and I still have to stay on an extremely strict diet to continue that "good" day. Please keep that in mind.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for over two years now. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker that ever. I may be happy and on that particular day I may feel better, but that does not mean the next day I won't feel worse.
Please don't tell me how “Auntie Mary” cured her bladder problems by applying a natural or any other supposed remedy. If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought; and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. There is NO cure for Interstitial Cystitus and every IC patient is different (one thing may work for one person that will not work for someone else), only some of my symptoms and pain can be treated. If there was something that helped, then myself and other suffers would know about it (this is part of the reason I am a member of the online communities I am a member of). This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, and if something worked we would know about it. If after reading this, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don't expect me to rush out and try it. I might not even reply. If I haven't had it or something like it suggested before, and it sounds reasonable, I'll probably take what you said and discuss it with my doctor.
I want you to know that the pain and instability etc from IC moves around. Please don't attack me when I'm worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I'll tell you. IC and the symptoms of it may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally. Sometimes the best thing for me to do when I do get a flare up is to recharge alone by myself. Sometimes the best way for me to avoid a flare up is to get plenty of rest and alone time.
Please understand that "getting out and doing things" does not make me feel better, and can often make me worse. IC may cause a secondary/reactive depression (wouldn't you get depressed occasionally if you had a condition that caused you pain 24/7) but they are not caused by depression. Telling me that I need some fresh air and exercise is not correct and probably not appreciated - if I could possibly do it then, I would.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm doing something else more exciting. IC does not forgive its victims easily.
Please understand that I can't spend all of my energy trying to get well from IC it is incurable. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness like IC is coming to the realization that you have to spend energy on having a life while you're sick. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with IC or any chronic illness/disability.
Finally, please remember that I am the same person I was before I was diagnosed with (started getting symptoms of) this; IC doesn't change the heart and soul. I still laugh, I still cry. I still love and I still get angry. I am me, I am not my disease. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, just like you.
But most importantly, I need you to understand me.
Signed
Me (insert your name here)"
To find out more about I.C. go to http://ic-network.com/
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| So, I just heard (a little late) that a "plus size" model won America's next top model. I just have to say that despite arguments of my lovely friends at work if I would have auditioned (they were so crazy to think I should) I would have probably been a plus size model. She is 5'10" and wears a size 10. I am 5'9" 1/2 and wear a size eight. Most models on that show are my height or taller and wear a 0, 1 or 2 size. So it just goes to show you how screwed up the whole Hollywood/Modeling scene is.
See Whitney Thompson here.
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| So, I just heard (a little late) that a "plus size" model won America's next top model. I just have to say that despite arguments of my lovely friends at work if I would have auditioned (they were so crazy to think I should) I would have been a plus size model. She is 5'10" and wears a size 10. I am 5'9" 1/2 and wear a size eight. So it just goes to show you how screwed up the whole Hollywood/Modeling scene is.
<a href='http://www.buddytv.com/gallery/rate-celebrity-photos.aspx?photo=1016024'>Rate Whitney Thompson's photo on BuddyTV</a>
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Yes we do give our cat a bath and no it is not cat abuse. She hadn't
had one since before Christmas, so I thought it was about time.
Fortunately our cat does clean herself (I know some cats when they get
old do not, but ours does), but it is good to give her a real bath
every once in awhile. It gets rid of all of the dander and makes her
smell really good (not that she normally stinks, but we use baby
shampoo). And that's about all of the "work" I am going to do today.
Not much else going on this weekend. I went to see "What Happens in
Vegas" on Saturday with my friend Jessica. It was pretty darn funny.
I watched a bunch of Redbox movies (several that I would not recommend)
and started on season one of "Ugly Betty." I saw parts of the first
season, but I did not see every episode. A lady at work let me borrow
it. Funny stuff.
I hope everyone is having a fabulous weekend. I will be sure to post
an "after" picture of Toto so you know that she is still alive. I
would hate to have anyone call PETA on me. Cats are people too, right?
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| David Cook won American Idol. Enough Said. See it here.
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