I am able to eat a bit more variety these days. I tried P.F. Changs the other day with a cousin of mine. I had the chicken fried rice and it was amazing. No trouble with bloating or distension. I also have been able to eat a family recipe of green chile stew that I love and had to avoid the last several years because it would cause so much pain, bloating, distension, and it felt as if it just sat in my belly for days. No longer :-) And of course, as I mentioned earlier, hamburgers and French fries with no regrets later. I am taken aback at times with how well I handle things that were so frighteningly painful before.
I can't report any weight gain or changes at this time. My appointments are beginning to be further apart. I enjoy that a lot. I will see the gastroenterologist as well as the Medtronic rep who is guiding my doctor through checking the status of and possibly adjusting my gastric stimulator on November 14th. I plan to have a good report.
I will say that I still deal with a lot of pain. There is a lot of cramping as well as continuing incision pain and extreme tenderness around the pocket that holds the device. Most times I eat (at least 98% of the time) it feels like I drank a cold glass of water and went for a quick sprint. It can last anywhere from 30 minutes to a few hours. I was told that is just the stomach itself getting used to moving again and possible getting used to the electrodes. I assume for someone as sick and weakened as I at the time of surgery, it would definitely take a great deal of time to rebound.
Emotionally, I am still on a roller coaster. I am so thankful for this new life. It is so difficult to wake up in the morning and still not feel refreshed. That's an issue I have had for a while and may not be directly linked to the gastroparesis or malnutrition. It is difficult to have that cramping after meals because I wonder if there is something wrong. That is probably a direct reflection of my personality. It is difficult to feel the pain of the surgery and the device in the shower, in bed, as I am dressing, when I tie my shoes, when I sit down.....it could go on. It is just an adjustment. I believe the pain is a way to get me used to the ways I need to modify my movements and actions to accommodate for the device in the long term. If I get in the habit of protecting it and favoring it due to pain now, it will be a habit by the time the pain subsides so I will continue to modify my actions.
As I go around and establish with new doctors in the area I find myself feeling alien in this world. Although many doctors have heard of the device, it is clear in talking to them that they really have a very basic idea of what it is. That carries over into everyday life because most people have no idea what gastroparesis is let alone a gastric stimulator. When I say I have just had surgery three months ago, I am looked at as if I should be back to normal life. Inquisitive eyes follow me often, but never ask any questions. In talking to a friend who has a rare illness that is very different than my own she said she says, "Believe me, it is more awkward for me than you." I found that to be a funny response.
I walk around this thin 30 year old woman. I am often dressed in athletic clothing because of the elastic waste bands and their comfort for my situation. I am picky at the grocery store, picky at restaurants, and often do not accept drinks or snacks at friends or families offer. For those who do not know, I can only imagine what thoughts run through their minds. I feel the need to constantly defend myself or justify my behavior. Then I battle myself thinking I owe them nothing and I have earned my stripes. A Type A people pleaser at its best may not be very conducive to chronic illness and rehabilitation for major injuries.
Ultimately, I have made it this far. There are ups and downs but that's life with or without chronic illness. These battle scars are a reminder of how strong I am physically and mentally. They are a reminder to take it easy or a free pass that I fought and scavenged for and fully deserve. Whatever we face in our days, take time to look back and pat yourself on the back for accomplishments others may not have noticed. Accolades do not always come in the form of trophies or certificates- they come in the form of a satisfied belly after a meal, or the smile on my son's face when we pull up to a pizza place he enjoys. It is great to see the sun rise everyday and know I have another chance to live this life.
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