Monday, October 25, 2010

"Home Away From Home"

There are only so many things that you can do in the hospital to occupy yourself, especially when you are in there for months.  I had to get creative and make it as pleasant of an experience as I possibly could.  I was only eighteen and had never been away from home for that long before.  I brought my own pillows, my comforter, my stuffed animals and always wore my own clothes.  No hospital gowns for me, never, unless they made me wear one for any tests.  The more normal I looked and having my own belongings around me, the more normal I felt.

I had a lot of visitors and was pretty spoiled with presents.  I had loved Elephants before my diagnosis, but this was when my collection really started to grow.  I was given all different kinds of them, from stuffed animals to boxer shorts with pink elephants on them.  My family members came by pretty much everyday, if not one then another.  My Dad would bring his lunch up to the hospital and spend time with me.  That was my favorite time of the day; when he came.  One lunch hour he came by and brought me an Elephant.  He apologized, said they were running out of ones to buy in the Gift Shop and handed me a little plush Elephant baby rattle.  It was very adorable and meant the world to me.  I still have her.  My Dad and I hadn't always gotten along very well before Crohn's entered our lives.  Bad experiences or situations can sometimes bring some really good ones along with them.  We became closer because of my diagnosis and the time we spent together after it.  I am strangely grateful to my disease for some things, and our relationship improvement is one that I am truly grateful for.

My older sister has been like a second Mom to me for a huge part of my life.  We aren't even a year apart and were treated like twins growing up, dressed alike, the same presents but in different colours, stuff like that.  She would come and stay at the hospital even if I was asleep.  She always has a book in her purse so she would just sit there and read until I woke up.  My Mom was there a lot of the time too and we have had some very humorous situations occur during my hospital stays.  I can imagine my diagnosis put stress on my family members.  When I went home from the hospital someone always had to be there for me to help me do things, I became very dependent on them.  They were very good to me and I love and appreciate them so much for it.

Sometimes I would get so bored there in the hospital though.  I would flip the mirror in my table up and stare at myself trying to see if I looked like a Crohn's patient, not that I knew what one looked like, but if I looked any different.  I didn't, but one time while I was investigating the circles under my eyes I lifted an eyebrow and a new pastime began.  I could lift my left eyebrow without moving any other part of my face, but not the right.  I would sit there for hours sometimes, practicing until I mastered it.  When I left there I was able to wiggle my ears, flare my nostrils, move my baby toes without the others moving and many other meaningless but triumphant skills.

Since I was the youngest on my floor the nurses would come and hang out with me when they had time.  But they were also very busy with the geriatrics on my floor, so I decided to give them a hand.  I would change my own bed linens, get my own extra blankets, just try to lighten their load a bit.  I was in a semi-private room and had many roommates pass through during those months.  Some were very elderly so I became their little "helper".  With many not being able to eat on their own, even though I was starving to death and the smell of the food would sometimes make me want to run screaming from the building like a crazy person, I would help feed them.  If they got new flowers I would put them in vases or water the ones they already had, but not too often did I mess with other peoples plants, because as my Mom and sister could tell you I would kill most of mine.  When a nice plant came for me it usually went home with one of them.  It's funny though, because now I really love gardening.

Roommates can either be a good thing or a bad thing, it all depends on you and the other person.  Sometimes I was so hungry that nothing could put me in a good mood, except for the food I was cruelly being deprived of (LOL) so I wasn't always the merriest one on my floor.  But when I wasn't starving I think I was a pretty pleasant roomy.

For a young persons first stay in the hospital, the geriatric floor isn't the one I would suggest.  Especially if their visit was going to be as long as mine was.  It's not because of the people themselves, they were all so nice and I had some long wonderful talks with some of my roommates, and learned quite a bit.  Some of them told me what the city I lived in was like when they were young.  I had two of them pass away while I was in the room, and that was very hard on me. After the second one that died, I guess the administrators didn't want me to deal with that again because they took the other bed out of the room, and I had it all to myself for the rest of my stay.  Annie was one of those that passed away.  Her breathing was very loud and laboured while she slept.  For the first couple of nights I thought I would have to sleep in the hall or ask for stronger sleep medication.  But eventually the sound would lull me to sleep.  I had gotten so used to it that the night she passed away I awoke because her breathing had stopped.  My Mom knew her time was near because Annie didn't talk, and then all of the sudden she started to talk to her Mom, she wanted to know where she was.  It was very sad when she died but I knew she had gone to a better place.

I had some really incredible roomies like Rita, she was maybe sixty or so, and was there for a hip replacement.  Her friends would come to see her with various samples of make-up, body washes and powder, they were so nice they always brought some for me too.  They joked that we smelled better than anyone in the hospital.  I was in a lot of pain at the time and so was she from her surgery.   When we watched t.v. we would lay on our sides facing each other and would watch the others television.   One night her husband came up to visit and had to rescue us from ourselves.  We were flicking through the channels and ended up on "America's Funniest Home Videos".  When we would find something we wanted to watch we would put both t.v.'s on the same channel and push them closer to the other person, out of our reach.  We watched for about ten minutes when a video of this little one or so year old little boy came on.  He was sitting and spinning himself around on a lazy susan, then when he tried to stand up and take a step, he would fall down.  The look of surprise on his little face was priceless!  For some reason we thought it was so hilarious that we couldn't stop laughing.  It really hurt both of us to laugh, but they showed the video two or three times and between the non-stop body giggles and the pain, we were laughing and crying at the same time with the t.v.'s out of our reach.  Her husband showed up just in the nick of time and turned the sets off for us.  You had to be there, it was pretty funny. :)

I had friends that came by to play fish, hearts or crazy eights.  Some would just take me outside for a breath of fresh air.  I also took calls from the Engineering Firm I worked at letting people how to do my job.  My Nana volunteered downstairs in the hospital selling coffee, baked goods and Nevada tickets with her Church Auxiliary group so it was really nice having her around, and the free Nevada tickets wasn't a bad benefit either.  My cousin was working there as a Respiratory Therapist and family friends also worked there, so someone was always dropping in to see how I was doing.

Financially, being in the hospital here in Canada isn't expensive, everything is free EXCEPT for your television!  Which sucks because without TV you could go insane in a hospital.  However, instead of presents some family and friends would give me money for it, which I thought was AWESOME!  Most people knew not to come see me between 1pm and 2pm because "Days of our Lives" was on.  When I was a kid I would sometimes catch "General Hospital" when I got home from school if my Mom had it on, and I hadn't watched it in years, but during that stay I became a full-blown soap opera freak.

New experiences and environments can be really scary, especially the hospital if you have never been there before with the needles and tests and needles.  But I have always found that if you keep things around you that remind you of home and use your imagination, your stay there may actually teach you a few things about yourself and you might find you have a better time than you thought you could.

Monday, October 4, 2010

A Spoonful of Sugar Helps the Medicine go Down, Not with This Medicine.

Keeping in mind that my diagnosis was way back in 1989, there weren't the same treatments that there are today.  There were only a few options to help heal the damage caused by the disease.  Surgery to remove the damaged areas of bowel was a last ditch effort.  Healing the damage using the medications available at the time was the first choice.

I was put on Salofalk, which is a 5-ASA drug used for combating the inflammation in the bowel.  I took it in pill form, eight a day, and also in liquid suppositories at bedtime.  Usually suppositories are used to clean out the bowel, so you have the urge to go quite badly.  When this feeling occurs you usually can give into it, but with these suppositories, to get the healing effect you can't give in, you have to hold it in.  It was very uncomfortable and an experience I had to go through every night for six months.

Imuran was another medication that I was given daily.  It is an immunosuppressive agent used to suppress the bodies immune system.  Crohn's Disease is a disease of the immune system attacking the digestive tract, so this medication stopped the immune system from attacking my bowel causing more damage.  It was effective but opens you up to catching any bug that is around because you can't fight them off.

Prednisone was the worst medication that I had to take.  It is a corticosteroid and is also helps with the inflammation caused by the disease, it is also an immunosuppressive.  It had the worst side-effects of any medication that I have ever taken so far in my life.  It improves your appetite, causes water retention which makes you appear like you have gained a lot of weight, makes you feel lightheaded, nervous or agitated, sweaty and flushed, you can have skin problems from it and a "moon face".  This is when your face becomes almost completely round.  It makes your face puffy-looking as if you had just come from the dentist from having your wisdom teeth removed.  I also had hallucinations.  Those and the anxiety were the worst.

I was also put on a couple of antibiotics but the worst one was Flagyl.  It is used specifically for abdominal infections.  It caused "Thrush" which is a yeast infection in the mouth.  After the many long months of being in the hospital when I was finally able to go home, my sister and her husband were going to take me to the cottage to be with my family for a couple of weeks,  My mouth and tongue had been hurting and very sensitive for a couple of days but when I woke up that morning it was so much worse.  I went to the bathroom to brush my teeth and looked at my tongue.  It, my gums and the inside of my cheeks were completely black!  I flipped right out and called my Gastro to find out what the heck was going on.  His secretary told me he wanted me to come in as soon as I could, so I dressed and packed in a hurry, called my sister to come and get me early and headed to his office.  When I got there I opened my mouth, stuck out my tongue and asked him "What now?, what is this?".  Of course he smiled at me like he always did, and told me it was thrush, a yeast infection.  He wrote me out a prescription, and as usual I asked him what it tasted like.  He laughed and said he didn't know, and that where this medication usually goes there aren't any taste buds.  That last part went right over my head and I didn't understand what he was talking about until the script was filled and I was in the car on the way to the cottage.  I opened the bag that it was in, read the package and then it hit me.  The script was for vaginal suppositories for vaginal yeast infections and the directions on the box said that I had to suck on them like lozenges.  YUCK!
When we got to the cottage and my family found out that I had to suck on vaginal yeast infection suppositories, they laughed whenever I had to take a dose. 
Now there is a liquid medication for this problem called Nystatin.  Believe me, it tastes much better. :)