Gastroparesis and the Fight
Last week I was in the hospital for dehydration. Luckily I was able to leave before my grandfather’s funeral, two hours before to be exact. I made it to the funeral with my slippers on because I didn’t have time to get my dress shoes from home. I was so glad I got to go. Today was my follow up appointment at the gastroenterologist at Vanderbilt. I will say that today my doctors failed me miserably.
I was ready to go with my list of questions and my list of things I can no longer do. I had quite an extensive list of both. I got to ask none of my questions at all and my doctor simply glanced over my inabilities before he got his instructor to come in and tell me there was no reason I could not do the things listed. To give you an idea the list is as follows;
Home
Cannot shave legs – causes pain in abdomen
Cannot tie shoes
Can’t pick up 3 year old
Cannot use dust pan
Cannot pick up floor
Blood Glucose is difficult to manage
Cannot have sex
Can’t load/empty dishwasher
Can’t load/empty dryer
Can’t clean litter boxes
Can’t feed/water pets
Can’t have 3 year old sit on my lap or cuddle
Can’t give toddler a bath
Having trouble concentrating
Can’t change toddler’s diaper unless toddler is at waist level
Work
Can’t eat at work
Nausea meds make me tired
Prolonged speech can cause nausea and vomiting
Can’t sit for long periods of time
Get car sick
Have infrequent breaks
Need a trash can near desk
Surprise vomiting (caused by a burp or cough)
No pain management
Having trouble concentrating
Anyone with GP can tell you these are perfectly logical as bending at the waist can cause pain, nausea and vomiting, while sitting for long periods makes the stomach even more sluggish. I even wrote y doctor a nice missive in case he did not let me talk;
I cannot work like this. Between the pain, nausea, and vomiting I cannot function as a human being. I don’t wear pants because bloating is an issue. I don’t wear tennis shoes because bending over can cause vomiting and abdominal pain. I feel like a useless person, as if I am a failure to my family. Shopping is an adventure because there is no telling if and when I will vomit or if and when the stabbing pains will hit me. I am filled with anxiety when I have to leave the house. At home after I eat or drink I keep a large cup nearby for when I vomit. There is nothing quite like running through Kroger or Target to get to the restroom with a mouth and hand full of vomit. Unless that is running from your desk the same way so as not to set up a vomit chain reaction.
After all of that and all the doctors could say was there was no reason I could not do those things. I got to ask one of my fourteen questions today; what to do about work. The answer? I was told I could go back to work tomorrow. I have lost faith in my health care system. I am vomiting up my guts, I have lost fifty pounds in five months and the anti nausea medication isn’t working not to mention they have taken me off all pain medication and I can go to work tomorrow. What about all my questions they didn’t have time for?
What are our options for long term treatment?
What are the side effects of taking erythromyacin long term?
How are we going to treat nausea?
What is our plan for dehydration?
Can we get home health for emergency fluids?
Will my nutrient absorption continue to drop as the disease progresses?
Is a 50 pound weight loss in such a short time cause for alarm or are we waiting until I get to a “normal” BMI to worry about that?
Is it okay to only be drinking two Boost shakes a day and can I live off of that?
Why is my hair falling out since my thyroid levels are good, is that a sign of a nutrient imbalance?
What is the short term treatment plan? What are we going to do about this right now?
What is our action plan for when I have another flare up?
Will an NG tube be a treatment option?
Will this disease eventually leave me disabled?
But instead of getting to ask these questions the good doctors at Vanderbilt instead told me, when my SO spoke up about how working would be near impossible because of the vomiting and pain, to deal with it.
I know this post is going off to rant land but I am absolutely appalled! Deal with it, there is no reason you can’t do those things, return to work tomorrow. I fight every day to be heard. I fight for every scrap of medical assistance given to me. I fight every day from sun up to sun down trying to get enough nutrition to survive. I fight my stomach to keep it all down. I fight my insecurities so they don’t take over my life. I fight my insurance to cover testing and medical leave. And now I fight my doctors. I want to be heard, I want someone to listen and I want a doctor with compassion. Every day with gastroparesis is a fight. I cannot understand medical professionals that cause us to fight them.
This month is gastroparesis awareness month, help me spread the word so we can get doctors that listen and better treatment options. We can win this fight together! #cureGP
treatment options
Gastroparesis Why?!?
You may be right where I am right now asking yourself why. Why did this happen, why me? Trust me I am right there with you. Right now I am asking myself these very questions. Obviously, if you’ve read my other posts you know, I am a diabetic, however until Gastroparesis my diabetes have been under terrific control. Many doctors will come out and say, this is because of your diabetes. In fact my first doctor said this without looking at my 6.5 A1C that I’ve had for the past five years. The fact is if it isn’t diabetes causing your gastroparesis, chances are you will never know what caused it.
Like I said before I was having issues far before my youngest daughter was born so I can rule out C-section as my cause. I am not completely throwing out the diabetes reason either. Even though I am meticulous about my diabetes there are always unforeseen complications the disease can cause. In short this is not your fault. This didn’t happen because you are a bad person, which I am sure you are not, it just happened. There is no reason to beat yourself up about that high blood glucose reading that one month or eating that slice of birthday cake. Too often we play the blame game for our health and we need to stop doing that.
Idiopathic gastroparesis, does that sound familiar, means the doctors have no idea why you have gastroparesis. If the doctors have no idea then there is no way you can expect to understand the reasons why either. Of course there is always the odd man out and that would be gastroparesis caused by medical accident, such as a surgical mistake. In that case you know exactly what happened or at least you have an idea and I urge you to look further into it.
Most times gastroparesis is very much the luck of the draw. I know it is horrible, the constant pain, nausea, and vomiting are sometimes too much for me as well. Food is a big part of our lives, even if it wasn’t before it is now. So much of life with gastroparesis is making sure we are eating the right thing or that we have the right food when we go out so we can avoid the pain and nausea. Sometimes this can have a negative impact on enjoying life but I have found that having a few pouches of pureed fruits and veggies that I can grab and go with helps a great deal. I know we all hate to think that “baby food” can be a good option but it can. I recommend having a few on hand.
Basically gastroparesis sucks and it sucks when you or someone you know has it. My goal is to help raise awareness of this disease. I would like your help, you can help by clicking the following link and signing the petition. The link will also help by sending emails to your congresspeople and the President . http://www.petition2congress.com/17206/petition-recognizing-gastroparesis-as-disability-by-ssa/?m
pattycakedoll 