TLDR is now in the dictionary (which I think is pathetic). Unfortunately this post is going to be too long and you don’t have time to read it fair enough but I’m writing it anyway because I have to.
Today I found out a very lovely girl I recently met (nothing is random) has Gastroparesis. It really affected me. See I had put all the awful horror of last year and the early part of this year into a box and avoided it. That’s what you do when you feel traumatized and are just trying to get your life back. How lucky am I to even have that opportunity?
Seeing those who continue to be sick, year in year out, through no fault of their own, makes you so grateful for any renewed health. After getting suddenly and violently ill last year in March with a suspected Noro virus, I got better quickly but remembered the awful feeling of unending nausea. I had two more brief bouts in May and June the last one sent me to the ER for the first time in my life because I had what felt like heart palpitations. Then in August of last year I got violently ill out of the blue, half way through the day, and didn’t get better for nearly a year. One of the hardest parts is how badly let down you can be, by people you thought cared about you, but on the upside, you also find out who really loves you and who doesn’t and that can be powerful and freeing.
I had to quit work for the first time in my adult life, I went into massive medical debt and I was suicidal for the first time in my life. I’m not saying this to make anyone feel sorry for me,I feel lucky. I’m saying this because I didn’t know ANY of the stuff surrounding this before, I was taking my health for granted, I thought being healthy living meant I would avoid bad things, it doesn’t always work like that.
It is thought Gastroparesis and other similar extreme illnesses are primarily caused by either Diabetes, complete breakdown of your autoimmune system, physical causes like gastric-bypass surgery or something you are born with, but most commonly is considered to have NO CAUSE. However if you do some research it becomes clear that VIRUSES cause the latter onset. Why women get it 9/1 over men and why pre-menopausal young, fit, healthy women get it, is also unknown, although studies show having a full Hysterectomy can reverse it so it clearly has a link with ESTROGEN.
I was told after being so violently ill for months without ANY cause found that I must have Gastroparesis. Gastroparesis is actually very rare but has become a catch-all umbrella term for anything the medical industry doesn’t understand. Supposedly the ‘gold standard’ test for this is the gastric emptying test but I found it is very unreliable and can vary from day-to-day. I was put on REMERON which is supposed to help a bit, if anything it made me worse. Fortunately for me, the city where I was at that time living in, San Antonio has one of the best Gastric Research Centers in the US I was able to see them and what I was told was life-changing.
My doctor told me I definitely did NOT have Gastroparesis and that in his experience 8/10 people diagnosed with non-diabetic Gastroparesis don’t have it. I had an EGG which showed my stomach was literally flipping and lurching and not emptying fully because it was ‘dumping’ too fast – this is called Gastric arrhythmia and is almost the opposite of Gastroparesis. I was horrified that they could have got it so wrong.
I was put on a very low dose of a medication that slows your stomach down. I’d lost so much weight it was dangerous, I couldn’t eat, I was throwing up all the time, I had constant diarrhea (which interestingly most Gastroparesis patients don’t have but they completely ignored how illogical it was to have constant diarreah despite this being almost the opposite of what you’d think of when you imagine a ‘frozen’ or non-working stomach which is the definition of Gastroparesis). The medication changed my life.
I had been suicidal for the first time ever because I decided if this didn’t get better I would not want to live. It was too awful. I didn’t have any family support, I felt so alone day in day out, that’s the worst part about something like this. That’s why my heart bleeds for those who are going through it. I had so much medical debt and couldn’t work and was nauseous (really, really severely not a little bit) 24/7 it ruined my life. The medication changed everything I’m still sick but I can finally work again, I can eat normally although my appetite never came back and I have to force myself which sucks. I have put on more weight than what I weighed before I got sick (as a precaution) and I am on the road to recovery. BUT I keep thinking of those who are still going through this.
I feel finding out today this lovely friend has what they thought I had, not only means I must do more to help others, because I KNOW how they feel, and what they suffer, but because we need to find out why this disease and others like it, are happening so often now when they used to be super-rare. It isn’t because people aren’t eating organic, most of the people I know with these things did eat well. Many of the doctors dismissed the link to Epstein Barr Virus and it was my PCP who finally decided to test me. My results showed I had EXTREMELY high titers of EBV in my blood. I worked out after contracting the Noro Virus last March I must also have either had a reactivation of EBV from childhood (90 percent of us get it as children or young adults) or I had never had it and got it for the first time.
Either way I realized EBV TRIGGERS Gastroparesis and Gastric arrhythmia. Somehow the autoimmune aspect of all Herpes Family viruses (like Shingles too) trigger various illnesses. The most common you think of with EBV are ME, Chronic Fatigue, MS, Fibromyalgia, Stomach Cancer. But more and more doctors are seeing stomach issues like Gastric Arrythmia and Gastroparesis. The medical industry says Gastroparesis is incurable. I don’t believe it is. I have read that if you can get your EBV down you can get over Gastroparesis. Many times if this is the cause then beating the virus beats the symptoms.
The only current treatment for EBV is high dose Vitamin C. I could never handle the acidity of Vitamin C. I found that Dr. Mercola made a Lypoic version that doesn’t hurt your stomach and I began to take 4000mg daily. Ideally if you can then IV Vit C works even faster and better. Once the EBV is reduced in your body the symptoms of the Gastroparesis may abate. The information online is awful and inaccurate, it basically says you will have it for life, but I have known people who overcame it, through diet modification, managing stress (which can exacerbate any serious illness) , adequate rest and treating the CAUSE which doctors never talk about because they want to treat the symptoms.
During this time many things changed in my life, at first I thought those changes were bad but I have come to see sometimes you have to force yourself to change, and what you think is a bad change, actually is a blessing in disguise. This illness forced me literally to reexamine my life, I realized I needed to make changes, which included moving and living elsewhere, as well as redirecting my energies into things I’d neglected such as teaching dance again and not giving up on my writing. I had let the awful experience dampen my hope and the truth is, when you survive something that awful it gives you a chance to find your joy again which I have in so many ways. I’m still on the road to recovery, I still have pretty bad days, but I am mindful of how far I have come and that along with support from loved ones makes all the difference.
If anyone you know is having severe stomach issues and they need help please give them my details because I want to help people. So often people are isolated and uncared about when they are sick. I have known many who have chronic illnesses and they are neglected by their families and invisible in our society. I felt totally alone when I was at my sickest it was the worst feeling in the world, which happens to most who experience long-term illness. The hardest part being since serotonin and other brain chemicals are actually made in the stomach, when you have severe stomach problems you get extremely down and anxious. On top of that Gastric arrhythmia produces a physical anxiety that had me crawling out of my skin, something I never had before.
I am truly blessed for having a chance to recover, but I believe in paying forward and I also believe if any of you know someone suffering, some of this information can help that person. The doctor I saw was in San Antonio, Texas and he was really, really good and I’d even say flying there to see him would be worthwhile, he is the clinical director of the National Gastroenterology Research Center in America.
If it wasn’t for him, those who love me and doing research I KNOW I would have either killed myself or spent the rest of my life suffering. I want to help anyone else get as well as they possibly can. I truly believe viruses are the cause of most things (cancer, etc) and we can fight them. You are NOT alone. Pass this on please to anyone you know who may be suffering. Thank you for reading if you did. We need to bring awareness to rare diseases like this that are growing in number and striking healthy young people in their prime. Never give up.

0 Replies to “TLDR is bogus / we should read, we should care and take the time”

  1. Sending continued thoughts of wellness, its been a while.. I know….
    “During this time many things changed in my life, at first I thought those changes were bad but I have come to see sometimes you have to force yourself to change, and what you think is a bad change, actually is a blessing in disguise. This illness forced me literally to re-examine my life, I realized I needed to make changes,……..”
    Often something traumatic will stop us in our tracks to grab our attention to get us to change.. My nervous breakdown did just that..

    Thank you Candice for speaking out and bringing awareness to this illness…
    I truly hope each day brings you to feeling whole and well..
    Sending much love your way for happiness, and wellness.. ❤

  2. When you’re sick and the doctors don’t know what to do about it (so they give you any old treatment just ‘to see’) you are in a truly frightening and vulnerable situation. I was 14 years before I got a diagnosis and even though there’s not much to be done about it, it still helps to know what it is. I hope you recover from this completely and prove them all wrong. What do they know anyway?

    1. My friend you always make me grin. A very good thing. You are right, what do they know? Half the time not very much. I recall you sharing your story and I know it helped but as you say it’s no full answer ever is it? We live despite it 🙂 I will prove them wrong. Thank you for being there during the awfulness, you really were and you were and are a true friend.

  3. Ah love. I’m glad you’re doing better. It’s not easy being sick or having been sick, because you’re right, many people won’t understand and they’ll abandon you. I may not have had that particular illness, but I’m no stranger to pain and suffering. You have people in your corner here. 💖

    1. Thank you so much Ellen I do too, I know had I read something like this when I was first sick it would have saved some suffering and that is all I want to do with those who are suffering now. Thank you so much for reading this.

  4. Oh, man! I need to remember to follow up. My partner has stomach issues like every hour of every day. Familiar story with the doctors, lack of congruent information, treating the symptoms… we eat healthy, have active jobs and kids/pets to keep up with, but no idea at all what is going on.

  5. Wow. You describe a living hell. Good health is a miracle and those of us that are blessed with it usually don’t appreciate it as much as we should. I’m glad things are going better for you and applaud your attempt to broaden general knowledge of these conditions. BTW, I had to look up TLDR in the urban dictionary. Shows you how out of touch I am!

    1. Psychic I woke up thinking about you today! You are so right about good health being a miracle, the young don’t realize that. Don’t worry you are not out of touch at all I only knew because it was on the news that the dictionary was adding it I didn’t know what it was either! I thought it was a sign of our times though! I’m up for skiing as soon as you are!

      1. We suffer along hoping to help find a cure for ourself and the future. I don’t see an end to Lyme treatments but do see better treatments. You know better than not is a lot when you’re is so much pain it turns your world upside down. Is you heart healing? I picked up maybe you were on the mend. You are stronger than you think and are full of more love than you can imagine. 🙂 Hugs

        1. My heart is fine I was reposting some old poems plus you know I love writing sad poetry but I haven’t been sad I’ve been doing really good I’m so grateful for my improved health and I agree Lyme especially is an incidious disease I’ve read a few books on it and it’s challenging but I pray for you, you are a very strong person darling friend 💓

  6. It’s always such a release when a terrible sickness loses most of its hold on us. I’m glad your focus is to help others who may suffer and are suffering from similar illnesses. Paying it forward is a beautiful thing to do.

    1. Well it hasn’t lost most of its hold yet but I really believe it will. Thank you Tre for being a true friend who helped me through this and was there for me, it made all the difference in the world, you made all the difference and I will be forever grateful to you.

  7. I can only imagine the frustration and despair at being misdiagnosed and suffering so long when the condition was presenting with obviously contrary symptoms. I am so glad you found good medical doctors and got the help you needed. Although this doesn’t even come CLOSE to what you went through, I suffered for almost 5 years with a severe chronic cough misdiagnosed as asthma. The doctors kept adding inhalers and beyond experimenting with GERD medications, never considered another alternative. Despite 4 inhalers, the cough persisted, sometimes so violent that I vomited. Finally after seeing a specialist, and having asthma ruled out, it was determined that I had an allergy. AN ALLERGY!!! I started on Zyrtec and Flonase and my cough disappeared. Now I only have to take the meds 3-4 months of the year. So very frustrating…. especially when the doctors just shove one drug after another just to see if it works. I’m glad you are recovering and that your paths crossed with this other young woman going through the same ordeal. It’s so precious to have an advocate on your side when you are ill. Blessings, Candice! ❤️

    1. Dear Meg, I could not believe that another young woman was experiencing this and I met her, it was quite incredible. My heart literally hurts for her, but she is an amazing person, far stronger than I. That said, I do think the less we compare the better, so your GERD and my whatever and her illness, they’re all bad to US and it’s not about comparison really is it? Definitely agree about doctors just shoving drugs in our direction. I am so glad your cough is a little better I had a friend who had the same thing as you she would get very sick if not treated so it’s no minor thing

  8. Persistent and serious illness puts everything into perspective. That you took the time to describe your experience in order to help others says how much you care, Many of us forget that others are suffering as we breeze along until without warning we are the ones searching for relief and answers.

  9. My God Candice. I knew you were ill last year but didn’t realise it was so serious. I’m so very glad you have pulled through and are looking to help others. You are a special human being 🙏🖤❤️🤗

    1. Yes very serious I literally could not have imagined how bad it was and you know I have a pretty good imagination! But what does not kill us makes us …. if not stronger at least we are still here! xo Lovely talking to you today

  10. I had no idea you were so ill, Candice. So, so, sorry that it has been such a struggle. I had an undiagnosed parasite for 5 years – Giardia; a gift from Egypt. I can truly empathize with how debilitating endless stomach problems can be. I feel stupid that I diagnosed myself with IBS without having it checked. Really glad you are on the road to recovery and found a good doctor. Mine was a Turkish gastroenterologist who just put Egypt and parasite together. I have been somewhat absent from blogging/following because of depression. Sending you lots of love and good health. My only advice is to take oatmeal with medication – it really helps the tummy. ❤

  11. I’m so glad you posted this. (I had to look up TLDR too, btw. Didn’t know it was a thing!) Am glad you’re continuing to do better – thanks to finding the right doctor. It was wonderful to get your email and I’ll be writing back soon! ❤️

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