I wanted my first entry to blow your socks off. To be Nobel peace prize winning information. I have so many goals for this blog and hope to concur them all. But yesterday I was stopped and humbled by my support group. In just one week we have lost FOUR wonderful people to Gastroparesis. One was a three-year-old little girl. This illness needs more awareness and studies. It is a debilitating, obviously deathly, issue that is not understood. When I was diagnosed I was given the label of having it and told if I need anything else come back. Wow !!!! So today I am going to share a life in the day of someone who suffers from having a paralyzed stomach. My severity is not as bad as a lot of friends that I know but it is a start for sharing.
Depending on how I slept, I wake up at a pretty normal time. Anywhere between 7am and 9am. With it being Sunday I woke up at 9:30 because I did take several medications last night that wipe me out. When waking up I take the six medications I need for other issues, nothing for the gastroparesis because there is really nothing I can take. So far as long as I take all my meds before eating or drinking for the day I am ok. I might soon have to start grinding them up, but for now I can still swallow and hold them down. I only take them with a very small amount of water because there is no way I am holding down a full 8 oz of water.
I then have my morning coffee. I have not let this one routine go. I just cannot yet and I have gone through many brands and strengths before I totally have to give up on my morning joe.
Now this morning was good and I woke up feeling good. About 30 minutes to 45 minutes of being up, BAM, I feel like I need to throw up. I go for the Zofran and hope it works fast. I eat a small pancake because my hubby was so great to make breakfast and then it is couch time for the rest of the day. Church was a televised service because trying to go means hoping nothing comes up, or out from below, or doubled over on pain. I am glad I at least have the option to worship in my house with my family.
I have taken up several crafts I can do while sitting on the couch such as crotchet. It is something to take my mind off what is going on inside my body. I walk around the house some and then for lunch, another small pancakes and ginger ale. My hubby and son have the chili I made them the day before. Got to keep my boys feed J.
Sunday is a pretty laid back day in our house so there is not too much to do besides watch movies and work on my crafts. Even God said it was the day to rest J My son really wanted to play CLUE this weekend but a board game was not in the plan. I hate the times when I just cannot sit at a table and enjoy my family.
So after lunch is more Zofran, Tylenol for headache and now movement has begun in the intestinal track so Bentnyl is taken for the cramps. I do get a big glass of Gatorade in for some fluids. Fast ward to dinner and you guessed it, I had a pancake but this time I did add a little piece of bacon just to get a little protein in and some Sprite. At 6:30 I figure I can go to bed and it be ok. I try to not be in bed during the day just so I feel accomplished, lol. When in bed I lay on my left side because that is where your colon is and it helps things move a little bit so I will take any help I can get. By this time I am in pain and know that it will be a bad night for getting sleep. I take another Bentnyl, walk around some to see if that helps any and it does a little. At 9:30 I let the dog out and sit up some in the recliner. I am trying to hold off on a Phenergan so that I will wake up at a decent time Monday morning. Back to bed at 10pm and then I take a Melatonin and Tylenol and hope for sleep.
This is how it is most days but during the week I do try and get a lot accomplished even if it is just a load or two of laundry. I try my best to keep daily routines and active as much as I can. If I don’t I will slowly sink into a depression and really do not want to do that. I will write one day during the week so you can get an idea of how that goes.
As I said before, my case is not as bad as others. I know what can happen and what this can lead into. I have to watch my nutrition and food intake or I will be put on a feeding tube. I have to watch my fluids and not get too dehydrated or I will have to get daily IV fluids. Everyone one of us suffers differently and in his or her own way. If you want to know more about Gastroparesis I am more then happy to lead you into the right direction and give you great information.
I am going to fight this and I am on a mission to learn how to make myself and others manage, even better cure, this disease!!!!!