Jeanean is at the very top of the wonderful hearts here on the "Rain". This is a prayer request for Jeanean & Doris. We go about so busy with life, our own families, businesses, & responsibilities & then are not always aware of what our own friends & important people are going through in their lives. Wishing to stop & pay it forward. I am definitely sending her lots of prayers & a hopeful easy & more rapid treatment for this debilitating disease. ((((HUGS))))) Jeanean. Please go over to her blog & leave a note for her, as I am sure she will appreciate feeling the warmth here from her friends & network.
Asking for prayers for Doris Blackburn, a good friend of mine.
I've been missing a bit for the last week. I share with you something new in my life.
Celiac Disease Disclosure: This post is not about me.....it is about never giving up and finding your way. There are many people out there that have this same disease and it will not be diagnosed. I am writing and sharing this to help others that they may find the diagnosis and the ability to get help before severe damage has occurred. DON'T FEEL SAD FOR ME....BE HAPPY THAT WE NOW HAVE A CLUE. READ THIS FOR OTHERS IN YOUR LIFE THAT MAY HAVE THIS DISEASE.
NEVER GIVE UP--It seems sometimes like the Universe conspires to give us a bit too much in one little period of time. The thing to always remember is that you are not alone. It is pretty much that way for all of us and having that little bit of knowledge can really make a difference. When we hear from others how they don't give up and how they keep on trying, we have been given a gift that allows us to be inspired. We are encouraged to keep striving to succeed and to overcome whatever event has occurred and to benefit from it.
If I look back over my life, it reads rather like some awful soap opera or giant thick novel that you can't believe the time line and events sequence of epic proportions. I am sure that I do have a book to write. My problem will be on the work of condensing it. I have a knack for long efforts of expression. This is true for us all.
BEING FOCUSED ON THE FUTURE IS KEY--It is not over until it is over and there is always hope. The future holds miracles for us all and the past does not. Being focused on the future is a formula for one and all and probably is the single most important thing that has helped me in my lifetime. I resist going through the long list of things that have been overcome in my lifetime to simply say that this formula has seen me through each and every event to find some new constructive meaning in life that was beneficial.
My Health--I have had health issues for many years. It is interesting how many people are not able to tolerate illness in others. I have many friends who have been supportive and others who see it as somehow my fault. It is so interesting the complexity of what we can integrate. I am a firm believer in not judging but allowing what ever may be the situation and I have done so with my friends.
David and I have put endless energy into figuring out on our own many pieces of the puzzle to only disclose these findings to Doctors who said that there is no help and no diagnosis. It is an auto-immune disease and we don't know what causes it. Here is a pill. Go away. The pills always make me sick with their side effects. My current Doctor says that and I quote "I am what is known as "a bad patient". I won't take the meds and they don't have time for me if I won't do as they tell me to do. By the way, I don't care how sick the meds make you, you need to take them until you body adjustS. If you can't breath then call me and we can talk about it." I promise you that is a direct quote.
I have lived in pain for many years and have trouble walking. My spine is collapsing. I have a thyroid disorder. I cannot digest food. I have had a heart attack. I have had signs of Congestive Heart Failure and been in the hospital for treatment. I have high blood pressure, a sleep disorder and Peripheral Neuropathy. In the last two years, I have had a skin conditions that is dry scaly and itchy. No amount of moisturizers seem to help. I would believe it safe to say this might be a sign of advanced Celiac but can't be sure (skin condition). The symptoms are widely differing between people.
We recently were talking to a friend, Doris Blackburn over New Years who has been diagnosed with Celiac Disease. As we listened to her story, I began to hear familiar symptoms and to question whether I might have Celiac Disease also. On her suggestion, I researched. It connects the dots and puts all the puzzle pieces there in one place. I have probably had this since birth. I have always had a poor metabolism. Throughout my life, if I did the Adkins diets, I would see improved energy and my body would lose the inflammation. I have another friend with Celiac Disease and her symptoms are equally severe but very different.
Celiac Disease is not curable and is fatal if not treated. What we have to hope for is that it is not too late. I don't know if bone can grow again but I am so much better off than my friend Doris. who will now require extensive spinal surgery as her spine has literally collapsed in several places. She is in excruciating pain. I am praying for her. The treatment is a gluten free diet and can take up to two years for severe cases to regrow the villi that line the lower intestine and aid digestion. Celiac patients suffer from malnutrition because these villi have been destroyed. David and I have told Doctor after Doctor that I don't get nutrition and that my body is malnourished.
I have been on a gluten free diet for a couple of weeks now with little improvement. We are moving more toward soups, liquids and soft food to aid digestion. Vitamins are critical to Celiac patients as it provides some small measure of nutrients and nutrition for the body.
IT IS NEVER TOO LATE--We have made progress on our own. I am able to control the water retention (edema) that caused my tendancy toward Congestive Heart Failure and have that element under control. I no longer require the CPAP machine at night. I have taken vitamins for a very long period because I noticed that they helped me significantly. I have long tried to eat vegetables and fruit each day to aid in digestion. I knew intuitive that bread was not good for me and only gave into it on weekends....including pasta. No more and with pleasure.
We have been treating the Thyroid for sometime now and I am sure that is the one thing that helped to get me back into activity in 2010. I basically could not get out of bed. I was so exhausted and weak. They also put me on the CPAP and oxygen at night. I slowly began to have more energy and to come back into activity. They were giving me Gabapentin which induces water retention (edema) and was contributing to my inability to breath. I figured this out after a hospital stay where they gave me a strong diuretic. I went home and researched all my meds to find that Gabapentin was contributing to the edema on the lungs. Progress was spotty and two steps forward and one backward now and again. Overall, progress was made.
Now, we may better understand what will provide me with the best help I can get. We will be seeing Doctors (looking for a new Doctor and I will be interviewing them) and we will be finally focused in what we feel is the answer. How sad that as a young girl, I was not given this information. I write this for young girls and families all over the world that you may know of this disease and learn about the symptoms. I write it for my good friends who are in such pain and are so sick. We are not making this up. This disease kills because it goes undiagnosed. If you have loved ones that suffer from an auto-immune disease, IBS, Fibromyalgia, Lupus, Thyroid and rheumatoid arthritis....the list goes on and on. So many of these conditions may be linked to this disease.
LITTLE ANT WITH THE RUBBER TREE PLANT--I am one stubborn person and I just don't give up easily. I am here and I will be better day by day and week by week. I will walk better and I will eventually be able to actually exercise. I will start small and it will progress. Health is my goal and I have zeroed in on it with a focus of determination. I will write about this disease now from time to time to help bring awareness.
In the meantime, if you could say some prayers for my good friend Doris Backburn. She is struggling and she could sure use some wonderful AR prayers for her healing and health. I sure love her.
PS Kathleen Daniels, I am hopeless....this is another long post....I promise one of the last.......LOL! There is always hope where there is awareness.....I see that I write posts that are too long. Rehabilitation is happening here!