Caring for our Caregivers - by Sheila Clark

I am a wife and mom. Been married to my best friend for almost 27 years. He is my rock, my nurse, my pastor, my wheelchair pusher, my medicine grabber in the middle of the night. He is everything to me. He is also a wonderful dad to our adult daughters. One of our daughters has moved away and has her own health problems that are very serious at times and she needs support too from her family. And my youngest daughter has special needs. She has been in and out of Duke hospital her whole life. To say our plate is full is an understatement. It is running over especially since I have been sick. It will be 4 years this November since my GP/DTP took a turn for the worst.

I am at the point now that flares are not an issue cause I seem to be sick all the time. Some days or moments the pain and nausea are not as difficult, it is more like I can hide it better some days than others. And hiding it is a huge thing for me cause of my family. With all that they have on their plates....my husband is a fireman, my oldest has her own health issues and is over an hour away from us and then my youngest is trying to cope with a brain injury amongst other things...if I can protect them from my illness I do all I can to do that. I think it is harder for them sometimes. Being a caregiver to both my daughters for many years, I know what is involved in being a caregiver. It is a very difficult job and can be very lonely.

My youngest daughter is afraid I am not going to live much longer. That breaks my heart. She has been talking about that lately. She has a learning disability that makes it very hard for her to understand what people say to her and she is pretty much in the dark around anyone that is talking. We are her translators. She is very smart and one of the most genuine people you will ever meet. Not jaded in anyway. SO, when she speaks....we need to pay attention. She has a sense about things that is very much a gift from God. So, these comments she makes is concerning. Not that I think she is predicting my death but the fact she is already thinking about it how to handle it. Like she is preparing herself.

My oldest worries about me all the time. But she is not well either. I protect her the most. She is very close to me, we  are so much alike. I think it actually physically hurts her to see me this sick. I worry about her so much.

And then there is my husband. He tries to hide his worries from me and the girls. He is so brave. I pray for him the most. But I see how his shoulders have dropped, the gleam in his eyes is fading, he is not sleeping well, he is very tired and has a very , very stressful job being the driver of a ladder truck with the fire department. He will listen to me for as long as I need to talk, need to be held while I cry, rock me in his big recliner on days that I just need to be held, wipes away my tears, gets on his knees by the bed and prays for me and our family. He is a real gift from God. I am so blessed.

Us moms or dads. Aunts, uncles or daughters and sons....our families are suffering with us. Some have more support than others. Any support we get either family or friend, it is so appreciated it. I think that if we can do anything to help our loved ones to cope with our health we should try.

Try and plan a special dinner for them. Call their friends and plan a kidnap to dinner or a ball game for your husband. Plan a sleepover for the kids. Leave little notes here and there to remind them how much you love them and appreciate them. They love us and do this for us out of love and deep concern. A caregiver has a tough job. We can do little things to lighten their load or just brighten their day. Send a card to a friend that always calls you. Write letters to your children or spouse for them to read. Keep a journal for them to read one day. Anything that you can do to help your caregiver will not only help them but you. We all need to help each other out. And with GP/DTP we are often very isolated.

Love you all very much and pray for us everyday. We need to be there for each other and our caregivers. This illness is ruthless. And we know it can take a life so quickly. We have all lost someone very dear to us, some of us have lost many.

Hope this has help in some way. I am right there with you all. I get this illness and the scary side to it. I get the long days and nights in pain and nausea that will not go away. I get the no phone calls from those you thought would be by your side no matter what. Those that have stayed need a huge pat on the back and often. Like I said , a little note hidden in a special place. A hug. Make an effort to get up, get dressed, put on some makeup for them. Just seeing us up and looking the best we can makes a huge difference, not just for them but us. I know that taking a shower may require sitting on the bottom of the tub til we can get the strength to finish our shower, but we can make these simple efforts to help our family cope. And I think when it is mom that is sick, it is so hard. I have a 2 children that have life threatening illnesses, and having a child so sick is very heartbreaking. But when mama is sick, things just don't run as well. You get a lot of lost looks. You see the sadness in your children's faces, you see that loss of hope in your spouses eyes or your partner. When we spend so much time in bed we have tons of time to think. I spend a lot of my time reading my Bible, talking to God all the time, watching uplifting movies.  We can take those times to write notes and cards. Draw pictures for the kids. Color with your children in bed. I love to color with my youngest daughter. We turn off the tv, listen to some " Jesus music" and just color. Small chat, but time together is priceless. Books to read to them. Cards near by to write cards to our loved ones and caregivers. And maybe pick up a hobby where you can make gifts. I love to needle point and that is my way of giving back to those I love so much and help me. If you are a member of a church, ask the pastor to call your spouse and chat with them. Maybe set up a lunch with the pastor for them to talk to away from the house. And there is one person we need to thanks more is our doctors. If you have a supportive motility doctor and a good family doctor you are blessed. And even if they are hit or miss when we visit them in the office or hospital we need to remind ourselves that this field of medicine must be so frustrating for doctors. They go into medicine to help heal people. They have a servants heart, most of them. A card to them would mean the world to them, trust me. A real heart felt letter letting them know how much you appreciate the long hours away from their families, the long hours of research, seeking out grant money for research...etc. Nurses that call you back. P.A.'s that are just as great as your doctor. They all need a reminder that they are appreciated. I think we can sometimes put too much pressure on our motility doctors because there is no cure. They deal everyday with patients that may never get better and could die. That is a heavy load to carry. So, send them cards too. That means so much to them.

OK, I am going to end this blog. I am tired, just took a marinol, feeling relaxed and not so sick right now. Going to close my eyes and enjoy a little relief.

God Bless again and love you ALL!
Sheila Clark

We need to take care of our caregivers the best that we can. They love us and that is why they have stuck by us and never left our side. No matter if you only have 1 person or a huge family, they all need a huge thank you and support too. Where would we be without them? I hate to even think about that. I am so blessed. We all are. We might not see that, but we are blessed if we have just 1 person that loves us so much to stand by our side and help us.

Stay strong my GP/DTP family. NEGU! ( Never, Ever Give Up!)

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 not....it 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 ladies...so 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 comes...live 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.

The unfortunate timeline of Chronic Illness - by Penny Rorrer

1- Symptoms start
2- You try over the counter medications
3- You bring it up to your Doctor
4- Your friends and family say "oh, everyone has that from time to time, it will go away"
5- You bring it up again to your Doctor, they do not remember you mentioning it before and there is nothing in their notes. They recommend the same over the counter meds you have been taking.
6- Your first trip to the ER...they make you wait hours then send you home after a blood test saying it is probably a virus.
7- You follow up with your Doctor, who orders the same blood test and gives you antibiotics "just in case".
8- You start searching for your symptoms online, family and friends start to accuse you of obsessing and tell you that if you stop thinking about it, it will go away.
9- The Doctor tells you the blood tests look normal and to come back in six weeks.
10- Before the six weeks is up you are back in the ER...the same blood test is done...they give you a few meds to calm your symptoms and send you home.
11- You go back to your Doctor who refers you to a specialist...the earliest they will see a new patient is 4 months away.
12- You end up in the ER 3 times before you see the specialist. They whisper that you are a drug seeker and ask about your stress levels.
13- Your family and friends are getting "sick" of you always backing out of plans and going to the ER so much. Some start avoiding you because they believe you are just seeking attention.
14- You see the specialist who orders a few more tests to check for the most common causes of your symptoms. They come back normal.
15- You start to wonder if you are just crazy and it is all in your head.
16- More trips to the ER with them starting to brush you off in a more blunt manner.
17- The specialist starts to test for more obscure causes of your symptoms.
18- A test comes back positive... You Have A Name For It!
19- You get home and start researching your condition online and discover there is no cure, no good treatments and a lot of conflicting information.
20- You tell family and friends that you found out what it is...and there is no cure.
21- They have never heard of it before (and because of that, cannot believe it can be all that bad)
22- Your primary Doctor knows very little about it and the specialist does not treat it so you search for one that does.
23- You find others with the same condition and create strong bonds, like Soldiers in the field fighting the same enemy.
24- Your family and friends still think it is not "as bad as you say it is" and still think that attention seeking plays a huge part. They "prove" this when you "ignore" their advice for how to live and handle your condition. To them, it proves that you do not want to get better because if you did you would try their ideas.
25- You try to get family and friends to help you raise awareness of your condition...but they don't. They are 'over it' and, besides, if it was a real problem then it would already be better known. This leaves only those suffering to work for awareness.
26- All this time you are struggling to find the right specialist to help you manage symptoms, battling with ER Doctors who automatically assume you are seeking drugs and simply trying to make it through another day.

Sometimes a diagnosis comes swiftly...sometimes it can take months, years or decades.

In the end, though, you are often left with a sense of guilt...as if having a chronic illness was a choice you made.

Those without chronic illness who read this might say it is "just another plea for attention" but the absolute truth is that it is stark reality.

Don't Give Up, by Sheila Clark

My life began with gastroparesis in 2008. I went to my GI Dr. because I was having a lot of nausea and feeling full after I ate. At the time I was 265 pounds, a food addict that thought my eating disorder was a secret. My Dr. ordered an endoscopy and, I think on a whim for him, ordered a gastric emptying test. When I went back to get the results from my tests he told me that I had gastroparesis pretty bad. He had this puzzled look on his face too when telling me this, guess he didn't think big girls could have gastroparesis. And for me, I had never even heard of gastroparesis. So, he gave me a prescription for Reglan and told me to eat 6 small meals a day.

Reglan and I did not make good friends, so that lasted about 2 days.

So let's skip forward to around November 2010. Gastroparesis that seem to lay dormant for a bit woke up with a vengeance. Pain and nausea was increasing. Trouble having a BM. But mostly pain. So, I called up my GI and told him what was going on. He had me take 4 separate doses of Miralax and see if that helped by the end of the day. Not only did I not produce a BM but I was getting worse. That evening he set me up for an endoscopy that next day, he feared I had a blockage.

Endoscopy was normal. He looked at me even more puzzled when I ask him could it be the gastroparesis? He just felt that it couldn't be that. He was really at a loss. He tried to help me but I knew it was time to find another GI dr. and soon.

I found a female GI dr. that I had heard was good. And I just seem to get along better with female Dr.'s, don't feel as nervous. She looked at my weight and read the gastric emptying report and said there was no way I had GP. So, dead end again. I was convinced it was the GP.

My husband is a fireman and we are a huge family of firemen and families that look out for each other. One of our brother fireman told his wife about my condition. She recommended a GI Dr. in my town that she said was the best in our city. She use to work for him and really said he was the one for me to see. My awesome husband Jimmy contacted the Dr. himself and pretty much begged the Dr. to see me. I got an appointment very quickly after that.

My new GI Dr. was so kind and very attentive. He took one look at my gastric emptying test and said that my GP was my problem, and it was pretty bad. He immediately set up an appointment for me to see Dr. Kenneth Koch, one of the world's leaders in treating gastroparesis. Dr. Koch works at Wake Forest Baptist Hospital. And that is only 45 minutes from my home. A huge blessing.

It took a few months to get into to see Dr. Koch but it was worth the wait. He did many tests. Not only did we find I have gastroparesis, but also severe colonic inertia, pelvic floor dysfunction and severe GERD. He talked with me about GP, gave me a copy of his GP diet, tried to encourage me and my husband. At this time I am still overweight but down from 265 to 191. He was not concerned too much about the weight loss at that time. I was, but I figured I wasn't going to starve with all this extra fat to burn. And looking back on this now, if I had not been so overweight I know without a doubt I would be on a feeding tube by now. And let me tell ya, with the last 3 years I have had, a feeding tube would have been a nightmare. Cause during this time my youngest and oldest daughter were going through some very difficult times. My oldest has health issues that are pretty serious at times and my youngest has special needs with a brain injury, she was so sick from September 2012 til Feb. 2013 and if I had a feeding tube at that time I just don't think I could have been able to manage all of this at the same time. Not without snapping.

In September of 2013 my colon took a turn for the worst. Even with every kind of laxative we could throw at it, BM's were becoming nearly impossible and very painful. During this time I was diagnosed with proctalgia. And if you have never heard of this, just think of trying to push a baby through that part of your body that your poop comes out of. That pain brought me to the closest of passing out in recent years. Even required a 911 call when it hit. I was home alone with my special needs daughter and was afraid I was going to pass out before my husband made it home from the fire station. Talk about embarrassing. Telling a room full of male EMS workers I had pain in my rectum was not a conversation I ever thought I would have. Fast forward to Oct. of 2013.  I was only able to get in sips of chicken broth, pain was off the charts all the time, nausea was so bad and it even hurt to lay down cause my colon would keep getting impacted, even on liquids. I went to see Dr. Koch in tears telling him I can't take this much more. One of my tests showed I could have Hirshsprung's Disease so he referred me to a surgeon, Dr. Jamie Bohl who is also located at Wake Forest Baptist Hospital.

When I first met Dr. Bohl I knew we were going to get along. She was kind and caring but straight forward and I really like that in a person. Especially a Dr.  Honesty is so important when treating a person that has a chronic illness. We need to know our options with honesty, knowledge and understanding. She told me by looking at all my tests my colon just doesn't work neither does my pelvic floor which is why it hurt so bad to even have a watery stool. And despite all my efforts my colon was not getting better but worse. She said that I was too old to have an undiagnosed condition like Hirshsrung's disease, that it was very rare if not impossible to be 47 years old and not been diagnosed yet. She told me that she could give me an ileostomy and that would remove at least one problem from my growing list of health problems. She told me to go home and think about it and let her know and she will set up surgery. It took all of one evening of dying from pain that convinced me that an ileostomy was the right choice for me. So, I called that next day and surgery was set for Oct. 10th, my 26th wedding anniversary.

The day of surgery was a huge reminder that I was doing the right thing. I had found a group on Inspire and they educated me about what to expect and what I would need before and after surgery. Dr.Bohl did a loop ileostomy because she said she didn't want to put me through a 5 to 6 hour surgery because I was so sick and since I don't need the colon, just leave it in place and bypass it with a loop ileostomy. Surgery was done laparoscopic so recovery was shorter. I was in the hospital 3 full days. Seeing my stoma for the first time was a bit of a breath taker.  Pixie is her name. She is shy and does not like to be looked at. I learned that many name their stomas which help puts a fun spin on having part of your intestines sticking out from your side. Not to mention that wonderful bag, oh let's not forget that. I wish someone would design some decorative ostomy bags. Sure would make emptying and changing my bag a bit less disgusting. But, this surgery did save me. At the point of surgery I was losing weight pretty fast and was in constant pain. My quality of life was terrible. And this was not only hard on me but my husband and daughters. Hard for the people who love us see us suffer, especially our children. No matter how old they get, we are still mama, and we never get sick. Or at least not for long. At this point it had been a whole 3 years of declining health. I am glad I had the surgery.

Now it is Feb. 2014 and my digestive system has surprised me again. What we feared would happen, that be my small intestines would quit on me could be a possibility now. Have had more tests because of increasing nausea and pain. Especially in my stomach that would radiate up into my esophagus. At times it felt like a heart attack would feel. And with my husband being a fireman and trained EMT, he was worried too. He told me that a person can die from just pain. It raises the heart rate, blood pressure. Dangerous. Dr. Koch ordered an esophageal manometry test and a 24 hour PH test. The esophageal test was a nightmare. Not only was in painful, had to try both nostrils to get this tube down, threw up a few times (this is before the tube was even in place for the test ) and then once I stopped shaking and was able to calm down, I had to drink 10 small sips of a salt water solution. After each swallow the machine measured the pressure in my esophagus. The PH test measured the acid and how often I refluxed. Tests came back showing that my lower esophageal sphincter had a lot of pressure under it hence the severe pain. And that I refluxed many times. Forgot to mention before this test, Dr. Koch did an endoscopy which showed erosion and gastritis in my stomach. And we discovered that I now also have bile reflux. Really bad.

What does this add up too? A digestive system that is ready to just stop trying anymore. Oh, and my bladder doesn't want to do her part. Taking medication to help her empty, have added a new pain medication that is helping as long as I don't miss my dose every 4 hours, taking pot in a pill now for nausea, added another acid reducer to the other acid reducer I am already taking, losing weight, oh did I mention I have hypoglycemia? Oh yes, the joys of low blood sugar.

I just turned 48 this year. On my birthday I wondered to myself, could this be my last birthday? Despite the ileostomy and all that the Dr.'s are trying to do to help me I continue to get worse.

My husband calls me the energizer bunny. He says his amazed what I am able to do with so little food and being so sick. But there are days, we have all had, that hiding the pain and nausea is impossible. One thing I have learned that is so important to my wellbeing is having faith in someone bigger than me. I also have started going out more and being around people. I think isolation is so dangerous for anyone. We were meant to socialize and to be a part of this world, in some way that is positive. I have learned that the mind and physical body are very much one in the same and react to sickness, sadness, pain, depression starvation in the same way. Both suffer. If the body doesn't get better we can focus on the mind and how we can better at least our outlook and still be in the race of life, still have a positive impact on someone. I make a very conscious effort to avoid anything that is stressful. My TV is set to only show movies that are PG rating or lower. I stay away from negative people. I try to encourage them because everyone needs encouragement. Living with GP/DTP can make a person very jaded with life. So, for me, keeping the dark side of this world out of my life is so important to getting through each day. I keep worship music playing. Read my favorite book, Bible. Get out as often as I can, even if I can't drive...I let my handsome husband do the driving for me. Putting on makeup each day, well when I am able to be in an upright position for more than a couple of hours, make a real effort to make myself feel pretty. And forgive people. Built up anger is bad for a body that is already struggling, peace is so important. These are a few of the things I do to make it each day. Without even one of these in my life, I just think that I would stay in bed and never get out. Another thing I am doing is writing in my journal. Not every day but as often as I can. I think writing down our feelings is helpful; sometimes just reading it back to ourselves is a little self-help therapy that cost nothing. When you have an illness that no one can see, and an illness that makes a once very obese woman thin again and through that I finally have gotten the approval from society to be acknowledged. When you are heavy, people don't see you unless to criticize you. So, with my illness I have had to adjust to compliments from well-meaning people. Compliments I never got when heavy.

Having gastroparesis has changed my life, my family’s lives so much. It has been a very scary ride. I have lost some friends over the years to this disease. Friends I only spoke to on the phone or through emails. Friends I found online in support groups for gastroparesis. Friends that mean so much to me because with them you can just say how you feel and not have to explain everything or hear the sure all cure for me if only I went gluten free. I truly believe there is good in everyone. Some get so hurt along the way that the pain controls everything in their lives. Living with an illness like GP/DTP, you have this fear of dying one day because you know that happens. And seems to be happening more and more these days. Now this may sound crazy to some, but GP/DTP has saved me too. Through this battle I have drawn closer to my faith, put the important things in order and learned to shut the door on the past and move on even though the crowd that walks with me is even smaller, I still plan to move forward.

Each day make an effort for yourself. Do something you haven't done in a while. Paint your toe nails a fun color, light a good smelling candle, listen to nothing but music for a few days. Stay away from drama like it is the plague. Find a support system outside your home. Even if it is at the grocery store. Make that clerk or the one working the register your new friend. Learn their names, send out cards to anyone that needs some encouragement. Visit a retirement home and sit with one of our most precious treasures, or seniors. You will find a good friend there, promise. Just keep moving. Isolation is like cancer. Once we are removed from the world not only do we die emotionally but we can lose the desire to keep going. Constant pain, nausea, vomiting, starving....still hard to believe this is where my life and yours is. But when that is your life every day, if there is no one and nothing there to keep you going, Man, this life is hard! And it was never meant to be traveled alone. And having a pet, let me tell ya...that is a huge help.  Even a Beta fish is company. Talking to ourselves is OK, do it all the time, but when you have a face to talk to even if it is a Beta fish, that is someone. And sometimes a friend that can't say anything back is the best, sometimes.

I hope I have helped someone today. That is my prayer.

Don't give up. Keep fighting. And get out as often as you can. The sunshine loves you.