Webster’s dictionary defines whirlwind as “something that involves many quickly changing events, feelings, etc.” That’s what this year has been. Since March, my life has been crazy. There have been so many things going on in my life, that I’m sure I’ll probably forget something.
We knew the trial gastric stimulator made some improvement in my gastroparesis symptoms, but we didn’t know how long it would take to get a permanent placement approved. Vomiting every meal was taking its toll on my body. My skin was taking on a grayish color and was formable like play dough. I was also having horrible leg cramps. I was getting pretty dehydrated. On March 1, a picc line was inserted and I was set up with home health care, so I could receive bags of intravenous (IV) fluids at home.
The very next day, I had a right cervical RFTC. In more common terms, they heated/burned the nerves in my neck to help with the pain I was having in my neck and right arm. This procedure was very helpful. The area where they did the procedure stayed numb for three to four months and the pain stayed gone for about six months.
So, I started taking IV fluids with potassium at home and soon my skin color and dryness improved. I wasn’t really sure at first about doing IV fluids at home, but it wasn’t as bad as I thought it would be. I’d had lots of IV fluids in the past, but never really paid attention to how easy it was to hook up. The tube that connects the bag of fluids to the pic line just screws onto the end of the pic line. The pharmacy that provided the IV fluids preprogrammed the machine and all I had to do was run the tube through the machine and select the run option.
In May, my insurance approved the placement of a permanent Medtronic Enterra system. Enterra is a Medtronic gastric stimulator that sends mild current to stimulate the stomach muscles. Stimulating the stomach muscles helps move food through the stomach. The gastric stimulator was implanted and I spent one night in the hospital for recovery.
When I returned home, I couldn’t tell that the stimulator was helping any, but they had warned me that it might not because they initially turn it on at the lowest settings. At each appointment, they would make changes until we found the settings that worked best for my stomach. At my first appointment they turned it up a little and I could tell it was helping, but I wanted it to help more. At my next appointment they turned it up some more.
The stimulator now seemed to be helping with my stomach issues. I was vomiting less and able to eat a little more. However, I started noticing something strange happening. Randomly throughout the day and night, I would feel this strange shocking feeling under my ribcage and my breathing would change. It felt like something was taking over my breathing abilities and making me breath in a patterned way. When I would feel the shock, I was forced to inhale and when the shocking stopped I would exhale like a person on a ventilator. It wasn’t just something I could feel, those around me could see my regulated breathing. One day it was doing it a lot and I decided I was going to listen with a stethoscope to see if I could hear the strange thumping feeling I was getting when I felt the shock and was forced to inhale. I was shocked by what I heard. Listening to the right side just below my ribcage I heard a noise that sounded like Thumper on Bambi. If you aren’t familiar with that cartoon, the other thing I would compare it to is the sound a jack hammer makes when tearing up concrete. At times, the sound was so loud I couldn’t hear my own heartbeat. For obvious reasons, I was concerned. I contacted the doctors and was told it sounded like my diaphragm was being shocked.
It was now late summer and I was trying to find out what to do about the shocking I was getting from my gastric stimulator, when I got a message on the screen of my charger for my pain blocking neurostimulator stating I needed to contact my doctor. I don’t remember if I have mentioned this before, but my pain blocking neurostimulator has a rechargeable battery. I wear a charger belt that somehow recharges the battery through my skin. Click here if you want more details.
I called my pain management doctor’s office to let them know I was getting this message from my stimulator saying I needed to call them. They confirmed my suspicions…that message meant my battery had to be replaced. I went in for an appointment with my doctor two weeks prior to the scheduled surgery in September. Since my neck and arm pain had returned, they worked hard to get me approved for another nerve burning procedure before my surgery.
I ended up having the nerve burned again, three days before my battery was replaced. Both procedures were out-patient procedures and I went home afterwards. Unlike the first one, I didn’t stay numb with the second nerve burning. However, I can tell that it helped. As for the replaced battery, it’s supposed to last just as long as the last one. However, I wonder if it will. I only had to charge the last battery once a month. This one is requiring me to charge it weekly. Four days after surgery, with seventeen staples and a four-inch incision, I had to figure out how to place the charger over the battery and get it to charge. I was too sore from surgery to wear the belt, so I taped the charging antenna to me. It wasn’t comfortable charging, but I managed.
So, I’ve finally made it to the present. Yeah! I can hear your excitement that we have finally caught up. It’s now November… approximately a week until Thanksgiving.
I saw my stomach doctors a few days ago and they turned the voltage back down on my gastric stimulator. I’m no longer feeling the strong shocking feeling or having bad cases of hiccups. They said the hiccups were a side effect of stimulating the diaphragm muscle that works the lungs. I’m still having some pain under my ribcage and in my shoulder, but it isn’t as bad. I’ve noticed I’m vomiting more the past few days and having to watch what I eat more closely, however, I don’t know yet if that is because they turned the stimulator down or something I’m eating.
I saw a dietician a few months ago and have changed my eating habits. She encouraged me to stay away from fat and fiber. That really didn’t surprise me. Meat, breads, and fresh fruits and vegetables are some of those things I’ve not been able to eat for ten to fifteen years. Since my body needs protein, I am learning to eat tofu and veggie burgers. I’ve learned to make potato soup with silken tofu added for protein. My diet has changed a lot from what I used to eat and many things still have to be put in the food processor. I may have to post some Thanksgiving dinner photos. I live with my parents and sister, but prepare my meals separately because I can’t eat most of the things they eat. I have found a few things I can make with my limited ingredients that taste good enough that they will eat it.
So currently, I am making lemonade out of lemons. Life isn’t easy… but it could be a whole lot worse. I’m trying to stay positive and take one day at a time. With God’s help I will triumph over CRPS/RSD and gastroparesis. I’m not giving up and I’m not backing down. Sure I have days that I get frustrated and depressed, but I think that would happen to anyone going through what I’ve been through in the past twenty years. When those times come, I have a good cry, have a little talk with Jesus, and try to move on. All I can do is try.
RSD/ CRPS and gastroparesis have brought about big changes in my life. Now that I’ve finished telling my story, I hope to be able to focus more on how I cope with the everyday struggles… ways I distract myself when things get tough… what inspires me to keep fighting… how others are helping me… and hopefully encouraging someone else who is walking this road ahead of me, beside me, or behind me. My advice for anyone with CRPS/RSD or gastroparesis is this: Keep looking forward…as we hope and pray for a cure.