Irritable Bowel Syndrome Message Boards | just need some overall support (long)

I'm gonna tell y'all about me and hopefully that will help you to understand my outlook in dealing with IBS and all my medical junk. This non-fiction story is only about the most important things that shaped my outlook. I only touch on 2, maybe 3 medical issues, when I actually have a dozen medical problems (I can make a list if you want). I'm always afraid to go to a new dr. b/c I'm afraid they'll think I'm a hypochondriac or something. Most of the problems are related, but conflict with each other. I'm at my wits end trying to eat properly to accomodate them all. Anyway, here we go....

I was born on a crisp October morning in lil Bozeman, Montana....ok, just kidding...no, actually I was, but I'm not going back that far

I'll start with age 13, 1990. Well, first, I was born blind in my left eye and the eye doesn't track right and every 10 years or so, they do a muscle manipulation surgery on it to make it straight. My first surgery was age 3, fast forward back to 1990. Middle of summer, we went from my hometown in Bozeman to Seattle, Wa. to have the surgery. The day before, they were taking final measurements and noticed that my right eye wasn't tracking right. They sent me in for a CAT scan just to make sure everything was ok. Is wasn't. They found a mass on my brain so they had me do an MRI to get a better view. After the MRI, they told us to wait for the neurosurgeon on-call. We waited, and waited, and waited...about 5-7 hours, can't remember for certain, but it was night time before he ever came. We were in the waiting room in the neurosurgery dept., only ones there, and all we knew was they found something, but we didn't know what. All sorts of things were racing through my head about what it could be and honestly I had no clue, cancer never even crossed my mind. Turns out the dr. on-call was still in surgery finishing up a 35 hour brain surgery! He finally came in, told us I had a brain tumor, extremely large, they think I've had it since birth, talked about possible symptoms my folks may have noticed. Like my crooked smile, mom always thought it was cute, inherited from dad, but turns out it was a symptom of the tumor; other things like my eyes different sizes (we just assumed it was b/c I was partially blind). He told us the tumor was literally wrapped around my brain stem, had it twisted in a knot, and they needed to do surgery within the next month and they wouldn't know if it was cancerous or not until they did surgery. All I could think about was losing my hair.

We drove back home the next day and for the next month I cried myself to sleep every night. August 13, 1990 we drove back to Seattle for the surgery. My parents found a boarding house a mile away from the hospital to stay at. I went in on the 16th for an angioplasty to shut off the blood vessels that were feeding the tumor. When I woke up in recovery, my folks asked if I was hungry. I told them I wanted a milkshake and cheeseburger from Mickey D's (McDonalds). In retrospect, that was the last laugh I had for nearly 10 years that didn't come from a movie. The next day I went in for the surgery. It finally hit me while they were wheeling me away from my folks that I might not see them again, so I told them I loved them, and cried the rest of the way down. I also thought about my little brother, he was turning 9 on the 21st. I didn't really believe in God then, but I was thinking "don't let me die! Josh won't ever have a good birthday if I do!" As you know, I believe in God now and he answered that prayer!

After surgery, I was in ICU for a few days doped up on morphine. Every time I started to wake up, they gave me more to knock me out. I hated it b/c of the "nightmares" (they make me laugh now!) After ICU, they moved me into my own room. My mom and her friend from a Seattle 'burb decorated my room....but I couldn't tell them how much I appreciated it. I lost the ability to talk for a few days. In fact, I lost the ability to do anything other than use my eyes and my mind. I couldn't hear, talk, walk, feed myself, write or anything. I was in the hospital for about a month recovering. During all the time, all I could do was talk (finally), see, and think. Two days after I left, I yawned and suddenly my ears made a "POP!" and I could hear again! Go figure! Took 6 months to relearn how to write and walk. I'm actually sorta ambidextrious (right and left handed) b/c I used my left hand to eat and write.

Because of its location, they couldn't remove the entire tumor or I would have become a vegetable. The only other real good thing to come from the surgery (other than removing the part of the tumor they did so I would live) is that it was NOT cancerous.

Well, the next 8 years of my life were filled with anger and hatred. I believed in God, but I hated Him and wanted nothing to do with Him! Since there is no physical God to be mad at, I took my anger out on everyone else. I've developed a permanent glare from those 8 years (I guess your face CAN stay like that!)

I was still a good girl, always have been, but at that time it was more b/c I was considered something like geek the freak at my school, no friends until my Junior year of high school (except 1 who I didn't realize was a true friend until college and we had been friends since the year before surgery).

The summer of 1995, almost 19, I just got back from spending June-August with my grandma in NC. I was getting ready for college and went to sleep 1 night a week before my first day. Now I've heard of this happening years and years ago, but never believed it could happen. When I woke up in the morning, I could not hear a thing. I went deaf literally overnight 1 week before college...and my major was Spanish! This is one year of my life that in a way I wish I could just erase or skip through. It was probably the hardest year of my life. When I went deaf, they ran an MRI and found that I had 3 tumors (the partially removed 1 and 2 new ones)! My dr. at home conferred for a while with my dr. in Seattle and finally at the beginning of October, it was decided that they would try radiation therapy to kill the tumors or at least stop them. Proposed start date: October 18th, my birthday! I told them no, absolutely not starting on my birthday! Finally they moved the date to the 20th.

Well, that last few weeks of school I fell into really deep depression and quit going to my classes even though I was still officially enrolled until October 17th so I could stay in the dorms. On the 19th, we drove back to Seattle. The hospital hooked us up with a nice boarding house to stay at. A lot of their radiation patients stay there. Mr. Martin was funny! I had radiation treatments every day M-F for 3 months (Oct. 20th - Dec. 19th) and every day I went in for treatment, I would lie on that table and pray for God to kill me. It was just too much for me, felt like I couldn't bear it any longer and I just wanted to die. My mom stayed with me in Seattle, but I was so depressed I pushed her away. I still apologize for it to this day.

I had a really hard time when I came back home. The school told me not to come back, but I did anyway...but I didn't plan to stay somewhere that didn't want me, so I transferred to another school and was there a year and then finally got out of Montana and wound up in Raleigh, NC at NCSU. Took me 7 years b/c of the transfers, but finally got my BA in History and then stuck around 3 more to get my MA in Public History.

Well, I'm not done yet!

Fast forward to 2003. I was living by myself at the time and woke up 1 morning, getting ready for church, and suddenly I felt like someone grabbed my waist from behind and then started tapping my waist on the right side. I started to freak out "who's there?!?!?!?!" and started turning in circles to find who it was (think of a dog chasing it's tail!). I finally realize there was no one there and that something was wrong with ME. I called my friends who lived the closest and asked them to come take me to the emergency room. They didn't get me in to see a dr. until about 5pm (I went in about 9am!). Finally they told me it was seizure and that 2 newer tumors (I had 5 total at the time) were pressing on a nerve causing them and the only way to control them was surgery. So, my mom flew out and my aunt drove up from a nearby town. This surgery was MUCH better, only in the hospital about 2 days and then home to recuperate and by the end of the week I was out with my mom and aunt shopping!

Back in 1998, I knew that I had to learn to accept my tumors. I'd have them all my life and I could be angry about it, depressed about it, but I couldn't let them stop me from living. Most of my medical problems come from my tumors, and the only good thing about them is they are not cancerous. This is a poem I wrote in 1998 is about the inner turmoil I went through to accept my tumor and all it entails (like my deafness).

IT

Because of IT, I am deaf.
Because of IT, I am blind in one eye.
Because of IT, life is so hard...
That sometimes I just want to die,
But on the flip side...

Because of IT, I know my lord.
Because of IT, I know who I am and where I stand.
Because of IT, I understand life...
And always willing to lend a helping hand,
But you see. . .

Because of IT, death is knocking at my door.
Because of IT, I have hardly a friend.
Because of IT, I feel I have no one around...
On whom I can depend,
But then again...

Because of IT, I have faith.
Because of IT, I've had notions near impossible to conceive.
Because of IT, I can look in the mirror...
And be proud of what I have achieved.

So you see, for me, the choice is clear...
I'm glad the "IT" is here.

I firmly believe that everyone has an "IT" in their life, something that they don't want, but if they take the time to look at it and dissect it, they can find at least 1 thing positive about it. Take IBS for example. I see a positive thing: I get lots of exercise when I get the runs...b/c I gotta run! And then sitting on the pot using my stomach muscles

. I'm not saying it's something you should be glad about or anything like that, but don't dwell on the negative, which is kind of the point of this poem. If you think something negative, counter with something positive, even if it's the same positive over and over again. Are you stuck at home b/c of the IBS, maybe it's positive in the sense that it helps you catch up on your favorite shows!

Ok, I know this all sounds stupid, but it really is a positive! Focus on the good, not the bad.

Augie, you asked me about friends. Let me tell you I may be young (29), but what I've learned is in order to have a good friend who is understanding about the problems, we need to BE a friend in return. There might be a lot we cannot do, but we all can listen. I know in the past I've tended to unload all my problems on friends in the past who decided they didn't want to be my friends anymore. It took me a while to figure out why. They always asked me how I was, always listened to what was going on, offered support and advice, but I never did the same in return. It was always about me, me, me. I'm not saying you don't already do this, but this is just something I've learned.

...There was something else I was going to add, but I forget right now.

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Erin
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IBS-D, GERD...
I got it comin' outta 1 end or the other!

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