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The Chronicles of Tummy Troubles: Why Does It Take So Long To Get Answers?

4/26/2017

4 Comments

 
I'm going to do things a bit differently for this post. I really want to highlight just how long it takes in this medical system to get an issue/new symptom resolved. With turn around time, wait times, and appointments to discuss next steps, it can (and usually does) take months to resolve a new issue. So, for this purpose my post will be an update, however it will be done in Chronological order. I will breeze through Dec/Jan/Feb because I have a whole detailed post on that here, but for the rest I will be more specific.
December: Mid December I begin to get a new pain in my stomach. At first it comes and goes, and often my entire stomach hurts. I brush this off as a transient symptom, and try to trudge through.

January: Things during this month only amplify. The pain becomes much more severe and much more difficult to predict or control. It's all complicated because I find I am fighting C.Diff, so a lot of the pain gets pawned off as being placed under the column of "probably from C. Diff." I knew however that there had to be more to it. Often it was hard to point to just one area of pain, because so many things hurt in so many different ways. I have had C.Diff in the past, and it's never hurt quite like this before. This felt like a very new thing to me.

February: Around this time I have blood testing done & it seems to look like some of the pain is due to Sphincter of Oddi dysfunction. This again is something I had dealt with in the past on a few occasions since I no longer have a gallbladder. In a way it felt familiar but, this time it was SO much more severe, and the location of the pain epi-center moved. I began to eat a liquid diet, and then a low fat diet which wouldn't trigger the attacks. This however did not seem to be the smoking gun. At the end of February I had an ultrasound done. The ultrasound was inconclusive. The only thing it showed was a more dilated common bile duct. This can be larger when you have Sphincter of Oddi, or have a removed gallbladder, so while it answered some suspicions it did not really give a solid answer. I did not quite fit into the box of this being primarily SOD, or just SOD.

March: I know how absurd this can sound to an outsider reading this post. How hard is it for me to point to a source of pain and figure it out? I ask myself the same thing all the time, but it simply is not that easy. I had (have) pain absolutely everywhere (remember C.Diff). Then I had an epicenter of pain which covered a quadrant, and it was large enough that I could not tell where it was coming from: my pancreas, my large intestine (transverse), my small intestine, or my stomach. I have a very tiny frame, and it is all packed in there. Often times it felt like multiple things were spasming or hurting at once. On any given day my "guess" of what was hurting would change. I absolutely did not know, and guessing was just driving me mad.

So, finally, around the edge of March I was approved for an abdominal X-Ray. However, after the X-Ray it took some time to get the proper radiologist to read it and give his report. I would say there was about 10 days while I was waiting to get some answers. This was probably the most helpful scan of them all, because it visibly showed three issues in the area where I had my most pain. The most notable takeaways were that a portion of my transverse colon was tightly spasming, not only causing pain but also not allowing things to move through that area properly. A little bit below that was an area in my small intestine which looked to show some bowel wall thickening. So, what the heck is going on? I mean, I got some answers, but the X-Ray can only show so much, and a more detailed scan was needed to find the cause and link

April: It's now April. I am still in a lot of pain, my large intestine feels inflamed and raw almost 24/7, and with each passing week/month I can eat less and less food. Eating too much solid food too many days in a row will bring pain, because once it reaches that tight portion of my large intestine it has difficulty passing through. So I begin to alternate liquid diets in between actual food. Because of this I often feel like I am starving. Also, not only has solid food become problematic, but a lot of my usual safe foods are causing me extreme pain. I would eat what should be an okay food, only to have about 2 days of stomach pain in so severe I can hardly move. It's getting more important than ever to get answers to rule out something more sinister. At this point I am not against exploratory surgery because the pain is that unpredictable and that bad.

Finally, we move on to the next step, which is a CT scan. Due to my MCS I am allergic to the contrast solution, so I received an abdominal CT without contrast. We were aware that this might prove to be less than ideal without contrast, but the plan was to start here and repeat with contrast (and steroids) if necessary. I got the CT scan done, and surprise surprise, it was inconclusive. The lack of contrast not being able to highlight certain areas made a set diagnosis impossible.

We are now almost to May, and we have to change directions a bit. All of these tests I have had ran (many which I did not even list) are very expensive. Insurance is not only slow, but also notorious for denying claims. Due to financial costs another CT is not in the cards. For now it is on the back burner as we start to pursue answers from a different avenue. Although still extremely costly, we began with a laundry list of blood work, specialized panels and cultures, as well as CSA's from a few different companies. A large portion of this is out of pocket, and just to give an example the CDSA 2.0 test is $700 out of pocket, the Geneva Labs CSA with Parasitology is $500 out of pocket, my MRT intolerance test was $700 out of pocket, and the Array 10 is $1,300. Out of pocket... all of it. I know I have said this before but it is legitimately survival of those who can afford it. And in my case I have had to choose wisely and also spread tests out, because its an impossible cost burden all at once. But, if I need answers, how else can I get them? How else can anyone get them? I also got a lot of blood-work done through insurance, which will have co-pays and deductibles, and I can hardly wait to receive that bill in the mail and promptly faint (ha).

Now: Waiting. Waiting for results, waiting for more test kits, and waiting to be able to order other tests I need. In the mean time I am fighting this pain which waxes and wanes in intensity on any given day. I am diligently keeping a food diary to find triggers, and I am hoping beyond hope that some conclusive answers come.. soon. In the mean time I only found one thing which takes the edge off and it's called Bentyl. My friend Hannah calls it "tummy valium" and I laugh because that is so spot on! The side effects of Bentyl however are not great, including feeling woozy, dizzy, sometimes nauseous etc. So, I reserve it for times of great need. It helps to calm that tense spasm in my large intestine, and any tiny bit of relief helps.

In the mean time I am really trying to enjoy my good moments, and my better days. When I have a chance to find some joy in my day I really focus on it. I don't want to let this sink me or take my spirit. It's almost May and I feel just as baffled today as I did back in December. The health care system moves so slow, and I am sometimes baffled as to how many months of my life can go by in a flash while desperately investigating. Keep in mind, I am actually a "lucky case" because my mother is a physician who can help fast track some things. Yes, THIS is what it looks like to have things fast tracked. I suspect, judging on what tests are still to come, their turn around time etc that I still have at least a month or two ahead of me before I will have more clarity. It is a waiting game, and a coping game. I try my best to put my attention elsewhere, especially on bad days. I know I have pretty much retreated from the people around me recently, but it feels impossible to connect sometimes through the pain. But, alas, I'm trying.

If you made it this far, thank you for reading! I hope this post provided a small amount of insight into navigating the medical system, the kinds of costs incurred, and why it takes so long to get answers. I hope to have a better grasp on this soon, and of course when I do I will absolutely share.

xoxo,
Christina

4 Comments

Dear Kelly Osbourne: Lyme Disease Is Not A Punchline, Nor Is It a "Trendy Disease." 

4/6/2017

3 Comments

 
I know I might not hold the "popular" opinion on this topic, but I felt like this needed to be said. As more celebrities come out and speak of Lyme Disease it's really important to hold them accountable for how their words affect each and every patient globally.
Kelly Osbourne is releasing a memoir about her life. Yesterday, lot of media outlets got an advanced copy, and when they read her chapter on how she battled Lyme Disease they wrote up news pieces with titles such as "Kelly Osbourne Almost Died From Diagnosed Lyme Disease" and "Kelly Osbourne reveals stage 3 neurological Lyme Disease diagnosis in new memoir." Pretty shocking headlines! When I saw them I felt shock, then sadness for her. But as I waited on the article to load I also felt hopeful. I thought, "Wow, another celebrity will help advocate!" However, then I read the article and I was utterly disappointed. Her snippet goes as follows:
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Trendy disease... that struck a nerve. So let's break it down, shall we? Yes, in Hollywood there are more and more celebrities coming out and sharing the hell they went through when they contracted Lyme Disease. It's not just Yolanda Foster; it's Avril Lavigne, it's Crystal Hefner, it's Kris Kristofferson, it's Debbie Gibson, it's Ally Hilfiger and so many more. They have lent their voices to the cause, they have advocated for the little people & they have given a face of legitimacy to this cause. This is so important and necessary right now, because for every one celebrity speaking out there are 10 other voices saying chronic Lyme disease isn't real. Patients are mocked by doctors telling them "it's all in your head" & have to fight tirelessly to be taken seriously.

If you watched the Real Housewives of Beverly Hills you saw Yolanda Foster fighting through 2 seasons of ruthless women saying she has Munchausen syndrome. They all speculated if her illness is real and gossiped about if she's even truly sick or not. She put up with a LOT, and sadly it's what so many people go through. In fact, Yolanda is releasing a book this year called "Believe Me: My Battle With The Invisible Disability of Lyme Disease" which is a memoir about her fight with Lyme. Even Yolanda, a well known figure, had to fight through getting made fun of & not being believed. It's hard out there for a patient! Therefore calling it a "trendy disease" is so hurtful to our cause. Because oh yes Kelly, everyone is just begging to be diagnosed with a life altering illness! People are lining up with the hopes of contracting Lyme disease so they can suffer through hell & lose pieces of their lives. Is she kidding?? Mind you this was in her book... it was proofread and edited MANY times. This went to print, with the full knowledge of what those words meant. This wasn't a slip of the tongue or an accidental comment. That's what makes it so much worse.

My next question would be, what does the fact that she believes it to be a "trendy disease" have to do with her not speaking out sooner? Is there some rule in Hollywood that only X amount of people can have a particular disease? I absolutely do not understand how that plays into a reason to not speak out. I could get her saying it was private & she felt like she wanted to keep it to herself. But that's not what she said. It's like, whoops too many celebrities beat her to the punch so she couldn't speak out about it? It's baffling to me. Because then I ask the question of, why now? Is now a good time to admit you had this "trendy Disease" because you had a book to write & it made for a chapter with drama? Lyme Disease is not a punch line, it is not a thing to be used for book sales or headlines. This disease takes people's lives. This disease is ruthless, and I do not take kindly to what feels like an insult to this community.

So what should she have said? If her point was that a lot of famous people have recently shared their diagnosis of Lyme disease then maybe let's look at WHY that's the case. Lyme disease is an epidemic, and its growing every single year by astronomical proportions. It is the fastest growing vector borne infectious disease in the United States. It's only natural that it would also affect celebrities, because no one is immune to it. Kelly had a great opportunity to parlay that sentiment into discussing how Lyme disease is a growing epidemic & how so many people (famous or not) are being diagnosed daily. But she chose not to. She had this great moment to convey that, but ultimately she chose poorly.

There are good advocates & there are bad advocates. Kelly is an example of a bad celebrity advocate. Do I believe she suffered? Of course I do. But I also believe she lives in a bubble most Lyme patients do not. She had the money, connections & resources to call up a personal Doctor, fly to Germany & get expensive specialized stem cell therapy and care. She is lucky and blessed enough to call herself cured and healed. For her it was a quick fix & an easy fix. Perhaps that bubble she lives in leaves her far removed from seeing the real suffering and horrors that every day normal patients go through. Perhaps she lives in a different world in Hollywood & that was her experience. Maybe in her mind it was a "trendy disease" that she felt embarrassed to be lumped in to. So she stayed quiet, got well & went on with her life. Good for her, but that is not reality. Lyme patients would do anything to get well in a snap. Unfortunately that isn't the case for the majority, yet in her memoir (which is making rounds nationally) it was portrayed as such. Like hey, no big deal, just a quick 2 week treatment and you'll be fine! This will only fuel the skeptics & the people who wonder why Lyme takes so many years & years to recover from.


What happens now is her choice. If she really cares she could use her celebrity status for good. She could lend her star power to raising money for advancements in research. She could team up with any of the organizations for awareness campaigns. The possibilities are endless. But I suspect that once this gets her book sales she will fade into the background and not speak up about it again. That is certainly her prerogative, and its certainly her decision how much of her personal life and health she shares with the world. But boy would I love to be surprised and be wrong about this. I hope she realizes her mistake and apologizes. I would LOVE to see that happen.

I really feel like she hurt the greater cause and only furthered her own cause by telling a quick jarring story as a snippet in her book, with no regard for how her words will hurt a community who has fought tirelessly for recognition.

I promise you that Lyme disease is not "trendy" by choice. Perhaps Kelly should take a gander at the Lyme Disease obituary page to see that. This is an epidemic on the rise, and as an advocate I will never stop fighting for the recognition of this disease globally. I hope her words don't undo any progress that was made, because we have all fought way too hard for every single ounce of advancement which was made to this cause.

xoxo,
Christina
3 Comments

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