Totally forgot to post this one on the 1st

This summer has been crazy. We have traveled soooo much for kids, sisters, family and just vacation. We have gone north, south, west and east, to the mountains and to the beach. We were planning on hubby retiring next year and had all the days planned out. The military has other plans and we just recently found out he will be going to Korea without us. Within 24 hours of telling parents and sibling what to expect over the next year we are down to a 90day count down of him leaving. On a positive note it is not 24-hour notice. So my slow and steady getting the house ready to sell is now sprint. I must remember that God does not give us more then we can handle. Right?

August is gastroparesis awareness month. It is the month where I should be doing the most to voice my issues and to bring awareness to others but I am just way to busy with my crazy life and own struggles to do what I want to with this disease. I did want to write this long drawn out story of my struggles and my suffering but for the past few days I have seen a couple post on facebook to make me stop and reflect. I have an acquaintance in my support group that knows it is time to stop being a medical study and let nature take its course. I have another that has doctors telling her it is all in her head and she is making herself loose weight and throw up all the time. I have seen post after post of members of our group that have passed away.

gastro

I am making this month about my fellow gastro warriors. Those who have just learned of their prognosis, those who have battled it for years, and to all those who know the suffering are almost over. This is a month to make society know it is an invisible illness that makes a person unable to do anything, eat anything, or even want to live anymore. Take the time and get to know at least one person, each week this month that has this disease. They all struggle differently and they all have a different story to tell. The more people know the more doctors will want to learn about helping those with gastric and digestive diseases. You might be the one thing that changes the day in one person’s life.

Breaking Bad

No we are not going to be making meth but we will be working on ourselves. I am not a person who is into the resolution kick. No one ever sticks with resolutions and knowing resolution is a decision to do or not do something and results in a pass or fail to many people and when they fail they feel guilt, low self esteem, etc. NOT worth it.

I am going to look more at my bad habits and how I can change them. I think my worst habit is my nutrition. Having gastroparesis I am already limited to what I can eat before I get sick. The best choices are a diet of liquids, crackers, and Gatorade but I refuse to be put on a feeding tube so I make myself eat. It seems like the foods I, and most GP’s (gastropareseis people) are the sugary, processed foods that are easy to get to and satisfy something in our brain more then on our digestive systems. My biggest concern with this is that the foods are so unhealthy and while most of us GP’s are not worried about calories, because most of use need more, I am concerned about the artificial things going into my body, the sugar that is messing up my insulin, nervous system, brain function, etc.

I signed up for the 21 day No sugar challenge, from The Happy Housewife (https://thehappyhousewife.com/real-life/no-sugar-challenge/), so that I could get some ideas and help along the way. Toni, the author, brings up a good point that when changing a habit we need to find a replacement for the bad habit. I quit smoking almost 7 years ago and unfortunately replaced cigarettes with soda. Well soda is going to have to go and now I am stuck with finding a replacement. Toni suggest a few fruits but as a GP fruit is a no-no. I am going to make several small smoothies for throughout the day and as with anything see what happens. I really cannot think of anything else to replace sugar with. Anyone have some good ideas?

I will post the smoothies I make and let you know how it turns out today.

Wish me luck !!!!

 

Happy New Year !!

 

Happy New Year !!!!

Sorry I have been missing in action. Had some time with family and took it 🙂

One thing you will learn about me is I hate technology and will not be on the computer when hubby is home or my kids(though grown) are around.

This year will be fun filled and I am hoping for my blog to grow with followers and help me grow as a person. New habits will be starting, I am hoping to branch out the boutique, and most importantly spread the word of God and spread the knowledge of Gastroparesis and getting it acknowledged as a chronic illness.

From my family to yours we wish you a very prosperous and happy New Year !!!!!

 

I Dont Know

The worst part about having a chronic illness is the not knowing. Not knowing if you will ever work again, not knowing if you will ever feel normal again, not knowing if you will get better or get worse, etc. With Gastroparesis it is even worse then that because even the doctor’s and specialist no nothing about this disease.

I lost a great job because I was always sick and out of the office. I wonder if I should go back to school to even further my education since I have nothing but time right now. But do I spend the thousands of dollars with the thought of maybe never working again? Do I totally rethink my future because I may never be able to have a normal schedule? Matthew 6:34 is a verse I have on my screensaver right now, So do not worry about tomorrow; for tomorrow will care for itself. As humans we think if our future and what might happen. For me my husband will be retiring in 18 months. This will mean a new job for him, if he decides, (he is only 37), moving, and possible being empty nesters. I don’t know that I want to stay at home.

It is such a one-day at a time scenario. You can end up in the ER or the hospital at any moment. It gets very overwhelming. What I have learned to do it make a weekly to do list with my priorities highlighted. I concentrate on those priorities getting done first and then work on the others as I can. I really need to start keeping a food diary to see how I handle each thing. I started one a few months ago but gave up by the second day because it was frustrating. I can not let this break me down.

Flare-up/Feel the Burn

I always like to do my research before posting something just so I know my readers get the right information. For the past few days I have been couch bound due to a flare up and wanted to let you know exactly what that was. I thought it was just a symptom that could happen any time and come on at any moment. Reading information from G-Pact (gastroparesis patient association) it last for days and actually is more about lifestyles. Are there changes in your diet, have you added more stress?

The worst thing about your gut health is that it is associated with soooooooo many other contributing factors. My goal next year to learn more about our digestive systems and the way it controls everything in our bodies and lives. I hope you stick around for all the great information 🙂

For a great read on flare-ups read: via Dealing with a Gastroparesis Flare

 

 

First blog post

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!!!!!

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