Sunday, March 2, 2014

When you take that turn – a blog in the middle of the night – by Sheila Clark

I remember when I was diagnosed first with gastroparesis. I had been hearing IBS for so many years. "IBS and stress are you problems" would say each new doctor I would find to try and help me. So, when I heard this new word, I had to do some research for sure because this one sounded scary to me.

I did the one thing that I think bugs some doctors, got on the internet and started typing in gastroparesis. At first took me awhile to spell it right despite my computer underlining it every time letting me know it is misspelled. I am spelling it right, right? Once I started looking my eyes got bigger and my fear got stronger. This new illness look to be life threatening. Surely not that, not this kind of illness for me. I just have IBS and too much stress.

This was in 2008.

For 2 years I had a pretty easy ride with GP (no need to type it out with you guys, one good thing about having GP sisters and brothers). I would get full after eating my not 6 small meals a day. I am still at this point a very serious food addict. Stuffing myself was part of my therapy, so I would get super full very often. The nausea really started to turn on me. Acid reflux got worse. Would wake up refluxing all the time. Lifted the head of the bed up, didn't help. Pain increased in my stomach, right dead center in my midsection. Up high. No gallbladder or even girl parts to be causing my pain, so to say my alarm bell was going off would be an understatement. I was getting worried. This is the middle of 2010.

For some reason, I don't know why, but come November of 2010 things really started to take its first real serious turn. Maybe it was God’s way of protecting me from overeating during the holidays. Not sure what caused things to heat up then, but they did. Now, forgive me if my memory isn't has sharp as it used to be but ....OK , just lost my point. Will come back to this point in minute, if I remember. November 2010 my life changed. My love affair with food was losing its charm. My heart was truly broken. Food had been my source of comfort for so long, since I was a young girl. Back when I was young I was always running, going...burning calories every day. I have always enjoyed the outdoors and taking long walks in the woods. Had a mini bike and would ride it all over the trails my brother and cousin had made. Eating the way I did from that time until I was in my early 20's had never really given me a real problem with weight. My overeating was never a problem until I slowed down and stopped moving. And also I would say in my early 20's was when depression really started to hit me. Depression and a food addict are not the best combination. So, I got pretty big.

I made an appointment to see the GI doctor who diagnosed me. Had not seen him in a while because I had gained a lot of weight and when you are heavy you dread the scales with a passion. Really did not want to go to the doctor but the pain, nausea and beginning of some weight loss was concerning me. I had put GP on the top shelf in the tallest closet in my mind and tried to forget about it. But here it was falling off that shelf and almost knocking me out. My GI doctor decided to do a colonoscopy. I asked him could it be the GP, sure he took one look at my weight and made his conclusion. "No, Mrs. Clark, I don't think that is the issue". So, I go home with my prescription for a bunch of yummy tasting turbo laxative and do my dreaded prep. Oh the prep. Now there is a country music song right there. Drinking that mess, and I don't care what flavor you get, if you can use Gatorade or is nothing but some sugar flavored ocean water. Sorry to let all of you know, but colon prep is salt water from the ocean. (Not really , relax. ) After a long day and night of stripping my colon clean the colonoscopy is done and what do we find? Nothing. Maybe it is IBS again, I am told by my doctor who is scratching his head at this point. Sure he is thinking, " How can a fat woman have gastroparesis?" So, I go home, once again, and get on the internet. By this time Facebook is up and running. I used it and YouTube to educate myself on gastroparesis. Found some great information out there from our G-PACT founder. Even one that has my now motility doctor in it, Dr. Kenneth Koch, he had been her doctor at one point and was helping her with a college project, I think that is right. Like I said, my memory is not that sharp, but I am still on topic, right? What was I saying? Oh! With the support of some online friends and educating myself I was convinced that the GP was my problem and I needed someone to help me right away.

My husband is a fireman, a great one I must say. And once again the fire department family rallied around us and tried to help. My husband's fire captain recommended a GI doctor that had really helped him. So, I made the appointment and went to see her with my gastric emptying test in hand. Now, women can be even more judgmental than men, not a new idea for us when she looked at my weight and the gastric emptying test she said there was no way I had gastroparesis, the test was wrong. My wind lost its sail after that appointment. I was running out of GI doctors in my area. Until one day another fireman buddy came through with a new doctor that his wife suggested. Said he was the best in  my town. I looked him up and saw that he was in the same practice with an old GI doctor I use to have many years ago. A female GI doctor I really liked but left cause I got tired of hearing IBS. I knew that most doctors do not share patients in the same practice, figured he would never see me. So, what does my awesome husband Jimmy do? He sends this doctor an email pretty much begging him to see me. And that worked. I got an appointment right away.

When I met my now "regular" GI doctor, he was very kind and listened to my complaints with great attention to my complaints on pain and nausea. Once I finished going over my symptoms he took a look at my gastric emptying test results and said without skipping a beat, "It's the gastroparesis." He explained the test results to me, which was the first time any doctor had done this for me. He explained that 2 hours after eating my radioactive egg, I had only emptied 28% of it. So, food was just sitting in my stomach for hours, maybe even days. He quickly referred me to Dr. Koch at Wake Forest Baptist in Winston Salem, NC.

Now I sit here, it's 2:10 in the a.m., typing on my computer because I can't go back to sleep. Mainly because I just felt the need to write this blog. I believe in a higher power that speaks to my spirit and I really felt that I needed to write this blog. A blog on when things took a turn for me in my life with GP.

Being in some online support groups, I have made some email friends and some I have even had the pleasure of talking to on the phone. I really was starting to see the dark side of GP. Not that there is a bright side, but I was seeing the affects of GP on the body and mind for the first time. Met people using feeding tubes. Some had organ transplants. Many suffered from nausea and pain. And those that threw up all the time, which was never me....I rarely throw up. And then people started dying. For the first time I was actually knowing people who had died from GP. That scared me. In the back of my mind, from the time I was first diagnosed, was  that very scared feeling that gastroparesis was very serious. And for the first time I am getting living proof it is very, very serious. I had left Facebook for a few months. Let's just say sometimes being sick and having an outlet like Facebook can sometimes be a bad combination. The mind is not always clear when in pain and sick to your stomach 24/7. My husband and I just recently joined Facebook, again, this time with a joint account. Facebook, Twitter, Inspire and websites like these can be very helpful. Not only can you learn first-hand from those that have GP too but you can develop friendships and a support system that is so important when living with a chronic life threatening illness.

It is now 2:25 in the a.m. and I am finally getting to my point. I think, bear with me.

My point is this. My journey with gastroparesis has changed. I have taken that dreaded turn with GP I had been reading about online and hearing about over the phone. I have taken a turn that has me concerned for my future and that is very scary. Not so much for me but my family; my husband and daughters. We call ourselves " Four Family." A saying my special needs daughter Carrie came up with. We have been through so much as a family. And many times we were all we had. At least in our minds we felt that way. Looking back now it was never true. We are never alone in this world, never. Always someone bigger is looking out for us.

I have lost a total of 98 pounds so far. I have an ileostomy. I am on the maximum dose of nausea medication I can take. My pain doctor has given me a stronger pain medication. I am now walking around all slumped over cause of pain and fatigue. Getting to that point of being thin. Not too thin yet but heading that way it seems. No longer am I having " flares". It is now just a steady flow of being sick all the time now. The intensity may vary but it is always there now. Have to set an alarm to wake me up twice during the night so I can take my pain medication cause if I miss a dose every 4 hours the pain is off the charts and at times takes a while to ease off.

I am fearing the dead end on this road. I know before a person gets to the end, there are many bumps and very sharp turns ahead and that worries me. Being wife and mom while very sick is very tough. And I think at times worse for them.

How many of you have reached this point in your journey with GP/DTP? How many were praying it was a virus that would go away? Or that this new diet is going to change things for me? This new medication. The gastric pacemaker. Feeding tubes. And some organ transplants. At some point, some of us reach the point in the road where we know that things are not getting better and may never get better. There is a song a good friend shared with me called, "If the healing doesn't come". I listen to it often now. Because of my faith, I believe in healing. So there is always going to be hope. But I am also a realist. I know the facts and all the possibilities. Now I am not saying I think the end is here for me. Because when I look at our founder of G-PACT, I am reminded that life can go on for many of us that reach that place in the road. It can be a tough road, very tough...but living life to the fullest is possible despite the struggles.

Tonight, well it is now 2:48 in the a.m. (in the a.m. is from some movie, hence the repeat usage of the phrase) so I need to say yesterday. My sweet husband Jimmy and I were talking about this illness of mine. And I told him that no longer am I going to live my life as if I am dying. No! Not going to give up anymore. Going to change the channel in my head and start living. There are days when I feel so sick. The pain is too much. I want to tear this ostomy bag off of me. Want to stay in bed. But thanks to my faith and lots of prayers, I feel that a new light and a new road are ahead of me. No longer a dead end in sight.

Life can throw us lemons, right. We all know the saying. I am not a big fan of lemons so making lemonade has never been a good idea for me, I wanted chocolate cake. With a side order of pizza and a huge salad. Oh, sorry my fellow GP//DTP, I know I just used profanity. Time to get off the food references. What I am trying to say is that life is still there to experience. We are still useful. We can still make a difference. Stay in the game. Stop living like the clock is running out of time. We never know when our time is near. Our time will come when it is the right time. So, until that day it up! Make each day special in some way.  At the end of the day look at the blessings, the good things in your life. Nothing is too small to be considered a blessing or a gift. And remember, the sunshine loves you.