Wednesday, February 26, 2014

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 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.

Tuesday, February 25, 2014

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.