Update on my life, I mean my Gastroparesis:
Since my last post - Charles and I go to the gym 3 times a week. I am building my strength in my arms and legs. I continue to ride the stationary bike and have now added the elliptical to my routine. This is going good.
In January I started with my fainting spells on a regular basis. I went to the primary care, cardiologist, electrologist, and back to the primary care. I am an interesting case to them. I also believe that they think that I am lying about symptoms. Not sure why because I hardly ever complain and if I feel that I am sick enough to go to the Dr. then something is wrong.
The good news is my heart and the plumbing to my heart are in perfect condition. I can exercise and that will do the body good.
I have been diagnosed with syncope episodes that means my heart rate drops to low and I pass out. In the beginning it was only happening in the morning getting ready for work. Now it happens all day long and their is no trigger to it. The cardo wanted a pacemaker put in, the electrologist said no - doesn't sound like anything that a pacemaker would help with. So they put in a Loop Heart recorder on March 25, 2014. I have had one episode since and when the Dr read the results - he was scared and now wants a pacemaker put in. Really? Did you think that I was lying to you?
He sent me back to the primary care to take care of the rest of the symptoms. It is now thought that I have Autonomic neuropathy due to the surgery. Basically what this is my nerves are damaged or paralyzed and do not send the signals to my brain to tell them to function correctly.
My symptoms are:
Autonomic neuropathy - nerves don't work and bodily functions are affected. Autonomic neuropahty
Sjogren's Syndrome - dry eyes and no saliva. Read about Sjogren's
Other symptoms including dizziness and fainting, digesting food, sweating abnormalities, exercise intolerance. Since I cannot regulate my body temperature I have to be careful where I am and what I am doing. I am either hot or cold but very seldom am just right.
There is no cure for this but you learn to live with the symptoms and control your environment. They will be putting in a pacemaker soon to control the heart (because you have to have your heart to live) but the other stuff -- I will have to adjust to the symptoms.
Other things in my life:
My husband's health has improved greatly. He no longer requires the insulin pump -- he takes Victosa once a day and his sugar stays between 60 to 120. He has lost 76 pounds since November 2013. Like I said earlier we go to the gym 3 times a week together and he goes an additional 2-3 times. We have switched to a paleo free diet (basically a lot of veggies and white meat and no processed foods.)
Charles' brother, Tim, had an overdose of heroin on March 7, 2014, and Charles removed the life support on March 10, 2014. Tim passed away 10 minutes later. Charles' family has been recovering from this -- it has not been easy on any of them.
Eli has moved into his own place closer to his two jobs in Melbourne, Florida. Eli is working at Sears and Home Depot and finding living on his own different. Keep him in your prayers.
Charles, Eli, and Myself (along with my sister and brother-in-law) will be traveling to Springfield, Missouri the week of April 27 to celebrate Stephen's accomplishments of graduating college. He will be graduating from Evangel University with a Mathematics Degree with a Chemistry concentration. Stephen will be moving to the Dallas Texas area after graduation to pursue his next college step -- Medical School. Stephen wants to be a orthopedic surgeon.
Final thoughts:
I have health issues, I work full-time, and take care of my family. God has His hand on my life and my families lives. When God takes you through something, He carries you until you can walk on your own. My faith has not changed. I know what I am called to do and my health is not going to hold me back from accomplishing these things in my life.
At our church I am ministering in the way of fundraising. I am involved with helping the various groups at church raise money through a monthly flea market. The second Saturday of the month a person can purchase a spot on our church parking lot to sell your stuff. The church has a concession stand as well. I am working with several other areas of fundraising to bring women together to have a bonding time and learn new things. I am really excited about this next stage in life.
Saturday, April 5, 2014
Saturday, February 22, 2014
My new mission ...
I have been trying new things, going to the gym, walking, and experimenting with new foods.
Let me tell you -- listen to your body. It knows when it doesn't like something or you are pushing it to hard.
The gym is good as long as I don't exercise to hard. I can ride the stationary bike at a low pace for about 30 minutes; do arms lifts and work on my legs. After about 45/50 minutes my body is done. Charles drives me home and I sleep for a while so my body can recover. I am getting to the gym about two times a week.
I am walking around the block with the dog at a slow pace. It takes me about 1 hour to go 1.5 miles. It is exercise and it is outside.
Now, food is another challenge for people with Gastroparesis. Food doesn't empty out of your stomach like normal and you have to be careful what you eat. I have purchased 8 oz water bottles and my goal every day is to drink 1 bottle a day. Some days are better than others -- but I keep pushing forward. The more water I can take in, the sooner they will consider removing my tube.
I tried almond flour pancakes - which were really tasty but my system did not like them at all. It took 5 days for the fiber to process through my system -- so not doing that one again. I tried white rice and that didn't do well at all. I tried sweet potatoes as well. Again, a no go with this body.
So today I have cooked a gastroparesis friendly "chili." I love white chicken chili. I modified the chili to fit what I can eat.
Instead of the beans - I diced up white potatoes and cooked them with all the seasonings of the chili. I cannot do cornbread, so I will have flour tortilla as the bread. In the chili I have chicken, seasonings of onions, green peppers, green chili, and garlic. I have been cooking this mixture all afternoon.
I am determined to find things that I can eat and tolerate. I meet with a dietitian on Wednesday who said she is willing to try and help me get through this disease.
So for now, keep following my journey.
Let me tell you -- listen to your body. It knows when it doesn't like something or you are pushing it to hard.
The gym is good as long as I don't exercise to hard. I can ride the stationary bike at a low pace for about 30 minutes; do arms lifts and work on my legs. After about 45/50 minutes my body is done. Charles drives me home and I sleep for a while so my body can recover. I am getting to the gym about two times a week.
I am walking around the block with the dog at a slow pace. It takes me about 1 hour to go 1.5 miles. It is exercise and it is outside.
Now, food is another challenge for people with Gastroparesis. Food doesn't empty out of your stomach like normal and you have to be careful what you eat. I have purchased 8 oz water bottles and my goal every day is to drink 1 bottle a day. Some days are better than others -- but I keep pushing forward. The more water I can take in, the sooner they will consider removing my tube.
I tried almond flour pancakes - which were really tasty but my system did not like them at all. It took 5 days for the fiber to process through my system -- so not doing that one again. I tried white rice and that didn't do well at all. I tried sweet potatoes as well. Again, a no go with this body.
So today I have cooked a gastroparesis friendly "chili." I love white chicken chili. I modified the chili to fit what I can eat.
Instead of the beans - I diced up white potatoes and cooked them with all the seasonings of the chili. I cannot do cornbread, so I will have flour tortilla as the bread. In the chili I have chicken, seasonings of onions, green peppers, green chili, and garlic. I have been cooking this mixture all afternoon.
I am determined to find things that I can eat and tolerate. I meet with a dietitian on Wednesday who said she is willing to try and help me get through this disease.
So for now, keep following my journey.
Troubles with the Tube
God is a great and when you are going through things -- you must look up to Him for guidance. I have problems with my tube and the I.R. Dr. needs to look at my tube (which can't be done until Monday or Tuesday.)
My week of January 21 started out with my Mic-key G/J coming dislodged and was falling out. I talked with Shands I.R department and they wanted me to come on Tuesday afternoon to have the tube replaced. I was really busy at work that week and couldn't do it. I taped the tube in place and worked all week. I called my G.I doctor and he set me up with the local I.R. doctor at Parrish Medical Center.
I was scheduled to have the tube replaced by Dr. Flynn on Thursday afternoon on January 30, 2014. They preped me just like Shands did for the procedure. Now remember at Shands it is an all day procedure with lots of vomiting and nausea. Charles and I were in for the long haul. I was taken back at 9:00 am, Dr. Flynn gave me a shot in the stoma (much like a tooth procedure) and was walking out of the hospital at 9:45 am. No sickness, no IV's, nothing! I was so happy!
Unfortunately, I cannot have the short Mic-key tube, I have to have the long tube. I know that tube works and I am ok with that.
Yeah!
My week of January 21 started out with my Mic-key G/J coming dislodged and was falling out. I talked with Shands I.R department and they wanted me to come on Tuesday afternoon to have the tube replaced. I was really busy at work that week and couldn't do it. I taped the tube in place and worked all week. I called my G.I doctor and he set me up with the local I.R. doctor at Parrish Medical Center.
I was scheduled to have the tube replaced by Dr. Flynn on Thursday afternoon on January 30, 2014. They preped me just like Shands did for the procedure. Now remember at Shands it is an all day procedure with lots of vomiting and nausea. Charles and I were in for the long haul. I was taken back at 9:00 am, Dr. Flynn gave me a shot in the stoma (much like a tooth procedure) and was walking out of the hospital at 9:45 am. No sickness, no IV's, nothing! I was so happy!
Unfortunately, I cannot have the short Mic-key tube, I have to have the long tube. I know that tube works and I am ok with that.
Yeah!
Saturday, January 11, 2014
A gastroparesis diet
Finding foods that I can eat is difficult. Let me give you a sample of what you can and can't eat. I do not have any other restrictions but my family does, so I am often cooking two meals for dinner.
Simple meals:
Chicken and turkey
Fish without skin, no shell fish.
Low fiber (no more than 4 grams a meal)
No nuts, seeds, or items with skin.
Many veggies have natural fiber and unless cooked to much cannot consume.
Pineapple
Apple sauce
Certain crackers
No corn items
Nothing fried
No fast foods
No milk products (sits to long in the stomach)
Things with ginger
Can't have a lot of. Liquid (so bowls of soup are out)
No rice (gets caught in the tube)
No caffeine
Small doses of chocolate and not at night.
No pancakes, pork, beef, or egg yolks
No red sauces
White bread
Cannot eat things like cakes or cookies (to heavy on the stomach)
Now , try and make something good to eat...
Crock pot meals with chicken and turkey
Tater tots that are baked (my favorite)
Casseroles that are cooked with chicken or turkey
Cucumbers with seeds removed and olives (my new salad)
Turkey burgers grilled or baked but not fried
Noodles - rice or regular but not wheat
White bread turkey sandwiches
This is just a small sample of what I can eat. So I am always looking for good recipes to try. Please share your thoughts.
Dawn
Simple meals:
Chicken and turkey
Fish without skin, no shell fish.
Low fiber (no more than 4 grams a meal)
No nuts, seeds, or items with skin.
Many veggies have natural fiber and unless cooked to much cannot consume.
Pineapple
Apple sauce
Certain crackers
No corn items
Nothing fried
No fast foods
No milk products (sits to long in the stomach)
Things with ginger
Can't have a lot of. Liquid (so bowls of soup are out)
No rice (gets caught in the tube)
No caffeine
Small doses of chocolate and not at night.
No pancakes, pork, beef, or egg yolks
No red sauces
White bread
Cannot eat things like cakes or cookies (to heavy on the stomach)
Now , try and make something good to eat...
Crock pot meals with chicken and turkey
Tater tots that are baked (my favorite)
Casseroles that are cooked with chicken or turkey
Cucumbers with seeds removed and olives (my new salad)
Turkey burgers grilled or baked but not fried
Noodles - rice or regular but not wheat
White bread turkey sandwiches
This is just a small sample of what I can eat. So I am always looking for good recipes to try. Please share your thoughts.
Dawn
New year and a new determination 2014
I have a disease called gastroparesis. I lost 2/3 of my stomach on July 21, 2012. I. Spent many months in the hospital until I was "stabilized" and have since learned how to deal with this disease. It is very much like dealing with other diseases like fibermyalgia or some other disease that many dr.s don't understand.
I have a g/j feeding tube that has to be changed out every three months by the Interventional radiologist at Shands Medical Center in Gainsville, Fl (a 300 miles round trip). I have constant dehydration because I cannot process water or liquids. I do not have hunger sensations nor do I get thirsty. (Which adds different problems such as remembering to eat during the day). I have an awesome office who have become my stomachs and remind me when they are hunger that I need to eat. I have issues related to this such as Sjögren's syndrome (is where my white blood cells are attacking all my moisture producing glades -very dry eyes, dry mouth, etc.) and fainting syncope (which happens shortly after getting up in the morning and getting ready for work) but this can happen anytime during the day. Some days I am nausea and can't function without my nausea medicine and other days I have more energy to run circles around you. I cannot exercise like everyone else because strenuous exercise is worse for gastroparesis. I cannot run due to lack of water and walking is hard on my muscles as well.
I work full time in an office and I take care of my husband who has medical issues as well. I am learning how to roll with my days and learn how to be very positive towards life. I have two adult children - one is 23 and lives at home, the other one is away at college in his last semester of college. I can do anything that I set my mind to and I have decided that 2014 is going to be a year of change for me.
Some of my goals for this year include:
1. Drinking more fluids by mouth so that I can have the g/j tube removed. Goals by dr is that if I can consume the recommended amount of water during the day she will remove the tube. I currently need between 70 to 100 ounces of water a day. Currently I consume no more 12 ounces over the entire day. I take in 32 ounces through my tube but that gets processed differently and doesn't help much.
2. I want to find an exercise program that I can do with all of my issues. I would love to take up karate. As well as riding my bike.
3. I have some personal goals that I am going to accomplish such as getting my notary and working as a real estate signing agent; taking and passing the paralegal exam to become a certified paralegal; and starting a business of organization and helping people get their homes organized.
4. My last and final goals for 2014 is to watch Stephen graduate from college and Eli be successful in his life by finding a career that makes him happy.
I will walk through this disease but I refuse to allow it to take what makes me happy!
Dawn
I have a g/j feeding tube that has to be changed out every three months by the Interventional radiologist at Shands Medical Center in Gainsville, Fl (a 300 miles round trip). I have constant dehydration because I cannot process water or liquids. I do not have hunger sensations nor do I get thirsty. (Which adds different problems such as remembering to eat during the day). I have an awesome office who have become my stomachs and remind me when they are hunger that I need to eat. I have issues related to this such as Sjögren's syndrome (is where my white blood cells are attacking all my moisture producing glades -very dry eyes, dry mouth, etc.) and fainting syncope (which happens shortly after getting up in the morning and getting ready for work) but this can happen anytime during the day. Some days I am nausea and can't function without my nausea medicine and other days I have more energy to run circles around you. I cannot exercise like everyone else because strenuous exercise is worse for gastroparesis. I cannot run due to lack of water and walking is hard on my muscles as well.
I work full time in an office and I take care of my husband who has medical issues as well. I am learning how to roll with my days and learn how to be very positive towards life. I have two adult children - one is 23 and lives at home, the other one is away at college in his last semester of college. I can do anything that I set my mind to and I have decided that 2014 is going to be a year of change for me.
Some of my goals for this year include:
1. Drinking more fluids by mouth so that I can have the g/j tube removed. Goals by dr is that if I can consume the recommended amount of water during the day she will remove the tube. I currently need between 70 to 100 ounces of water a day. Currently I consume no more 12 ounces over the entire day. I take in 32 ounces through my tube but that gets processed differently and doesn't help much.
2. I want to find an exercise program that I can do with all of my issues. I would love to take up karate. As well as riding my bike.
3. I have some personal goals that I am going to accomplish such as getting my notary and working as a real estate signing agent; taking and passing the paralegal exam to become a certified paralegal; and starting a business of organization and helping people get their homes organized.
4. My last and final goals for 2014 is to watch Stephen graduate from college and Eli be successful in his life by finding a career that makes him happy.
I will walk through this disease but I refuse to allow it to take what makes me happy!
Dawn
Subscribe to:
Posts (Atom)