"Suffering the Slings and Arrows of Outrageous Fortune"

Posts tagged ‘gastroparesis’

Rare Disease Day 2016

 

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Today is Rare Disease Day, with a focus on Making the Voice of Rare Diseases Heard.

Usually, I write a post on the theme because I feel strongly about this. Ironically, I am feeling overwhelmed by actually living with our allotment of rare diseases and just don’t have the brain power to write something brilliant.

I can share some links that will help you share some awareness on social media. Use your platform to share information because giving a voice to this cause is important. Make your voice heard and support the Rare Disease Community!

 

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What are you doing to promote awareness today? Leave a comment and share!

 

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Complex Child Article

I have been quiet on here but our life is not at the moment. If that sounds slightly ominous, that is because it pretty much is. *Sigh* I will go into detail soon…

I have several posts I need to write and get up in the near future, but I want to take a few minutes and share this exciting (to me at least) information now. I recently wrote an article for the Complex Child E Magazine that was published in this month’s edition. The September edition is Bone, Muscles and Joints and that seemed a perfect opportunity to share info about EDS and raise some awareness. The article is basic information about EDS and explains why early diagnosis is so important. My goal was to pack as much detail about EDS in as possible so anyone who was not familiar with it would come away informed and more likely to connect the dots.

I had never heard of this website previously, but I am glad I have and I am happy to share it here as a useful resource. I think it is a great resource for parents of medically complex kids – there are many articles there by parents and even by kids themselves. Lots of great information  and I encourage you to take a look at the many helpful articles there. And, I would also encourage you to consider writing your own article and submitting for inclusion in a future edition. (The editor, Susan, was a pleasure to work with so don’t be intimidated!)

So, please go have a look at my article: Living with Ehlers Danlos Syndrome but do make sure you read the whole edition as well and check out their archives of previous articles.

I hope you enjoy it and I feel fortunate to have had the opportunity to have educated others about EDS! If you want to come back and leave a comment with feedback about the article, that would be awesome!

Need your help again…

You may remember me talking about a project Emily and I are working on – we are writing a book and hoping to get it published. I had sort of intended to have it ready and submitted a year ago but, well, that didn’t quite happen. It has been mostly written for almost a year, but I got sidetracked: the story of my life.

Anyway, we are back to seriously working on finishing… Emily is writing her portion (which may have been a large part of the delay) as I continue to remind her that this is formal writing which needs to be a notch (or two or ten) higher than her blog or other conversations. She is doing a good job, although I am slightly regretting telling her that I expected ‘real’ and ‘honest’ and not the sanitized version from her. I am thinking I should have requested sanitized and worked backwards…

On a serious note, this is a big deal and a fairly emotional undertaking for her so I am pleased that she is giving it a serious go. While she works on her part (basically, a short essay to accompany each chapter) I am working on our book proposal which will be submitted to agents in due time. The book proposal is nearly as complicated as writing the book itself, so it is no small task. I know we are not unique among authors who are convinced their book should be published, but, you and I both know that the EDS/ chronic illness community can always use another book that offers encouragement and hope. So, I am going to naively carry on believing that we will be published and hopefully my positivity will pay off. 🙂

I asked for help from my readers when I first got started writing and I am going to ask again:

rainbow scroll 2First, I would love it if you would comment with the title of any books on the topic of living with chronic illness or suffering or any topic that would be helpful to living  well with chronic illness that have helped you and you can personally recommend. This can be as a parent who has an ill child, a teenager who is ill, or an adult who is ill. I have a pretty substantial list of books, either that I have read or that have been recommended to me but I don’t want to miss any! So, tell me: What books are your go-to selections for encouragement, help, guidance in your life with chronic illness? What book would you give to a friend who was starting a journey with chronic illness?

rainbow scroll 2Second, I am including thoughts, comments, experiences of other teenagers who live with chronic illness. I have several people who have already contributed but have room for a few more. So, if you are, say, are a teenager up to mid-twenties and are interested in answering a few questions so I can include some of your thoughts into my book, let me know. Since the book is applicable for any chronic illness and not just EDS, I especially would like thoughts from other conditions: asthma, depression, anxiety, diabetes, Chiari – any chronic illness, really. I especially need the perspective of young men, as their experience may be a little different than girls. Comment below or contact me via the link in the sidebar.

rainbow scroll 2Third, please take a moment to hop over to this post and answer a couple questions in the poll. Part of the book proposal is research on why my book will sell. So, share your thoughts via the poll so I can have a few statistics on why this book is needed and a head start on future projects. If you have a comment to share about why a book such as this would be helpful, feel free to share it below.

I appreciate your help and am looking forward to hearing from you!

 

Please Take This Poll

As I mentioned in my previous post, my daughter and I are writing a faith based book that we are hoping to have published. This book focuses on mostly the emotional aspects of living with chronic illness, although some practical advise is shared. It is aimed at chronic illness in general and not only EDS.

We are in the final stages of getting the book ready to submit and I am doing a bit of research that you can help me with. (I have a few future projects in mind as well, including a companion journal that could accompany our current project. This journal would include recommended reading (by me), inspiring/encouraging songs (recommended by Em), and activities/exercises that expand on the topics covered in the book.)

All you need to do is take a moment and answer the questions in this poll if you are affected by chronic illness. The more responses I get, the better!

Thanks in advance!

Check all that apply:

 

Living in The Fire Swamp of EDS

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Fire Spurts and Lightning Sand and R.O.U.S.’s! Oh, my!

The Princess Bride is a true classic and one of the best movies ever (IMHO).  You might think me crazy but I have come to realize this fan favorite contains a helpful illustration of life with EDS…

You remember the Fire Swamp – it is where Westley and Buttercup escape from the frying pan into the fire and where Westley tries to convince Buttercup that the very real dangers (Flame Spurts, Lightening Sand and Rodents of Unusual Size, aka, R.O.U.S.’s) they face are no big deal.

 

 

At first, living in the Fire Swamp, like EDS, seems impossible (inconceivable, even) and downright terrifying. You hear all the horror stories about it and you start to believe that it would be impossible to come out of the Fire Swamp alive, let alone unscathed. The dangers, regardless of how Westley gallantly tries to spare Buttercup, are very real and require constant vigilance. They are intimidating and overwhelming when you first encounter them…

There are Flame Spurts – jets of flame that spurt up, setting fire to anything nearby. The Lightning Sand is formidable – patches of quicker-than-quick sand that immediately engulf and bury the unwary. And, last but not least, the Rodents of Unusual Size: enormous, vicious rat-like creatures that attack without warning.

Each of these seemed larger than life as Westley and Buttercup start navigating the Fire Swamp, but, as they encounter each one, they learn how to manage, overcome and defeat each challenge.

Flame Spurts? They make a popping sound before the flame appears, providing ample time to move out of danger. Lightning Sand? Buttercup unwittingly discovers what it is by stepping into it and being instantly buried. She and Westley aren’t likely to make that mistake twice after they both nearly die. R.O.U.S.’s? Yes, they exist. And, while they are admittedly vile, heinous critters that do real damage, they are not immune to flame spurts and the sword.

Oh, it is not easy to be sure – these threats are real and they take a toll. The couple is  battered and bruised as they exit the Fire Swamp and Westley boasts to the evil Prince Humperdinck that he and Buttercup could live indefinitely in the Fire Swamp. The unlikely (definitely inconceivable) fact remains, though: They unraveled the secrets of surviving the Fire Swamp.

The Fire Swamp experience is pretty much our everyday life with Ehlers Danlos Syndrome…

Dislocating joints, crazy injuries, muscle spasms? You quickly learn how to pop the joint back in place (reduce a dislocation), brace an injury, relax a muscle spasm and determine what needs a medical intervention and what can be dealt with at home. Yes, it hurts and it is scary but you learn to manage.

Gastroparesis, constipation, MCAS? You learn what you can eat and what you can’t eat, take Miralax regularly, and carefully manage the symptoms with diet and medications. Yes, it is challenging and can suck you in before you realize what is happening but you can manage the issues and find relief.

The neurological stuff, dysautonomia, seizures and other poorly understood co-morbid conditions that stalk EDSers? Like the R.O.U.S.’s, these are very real and very nasty but they can be defeated – or at least managed – with a great deal of effort.  The right meds, the right doctors and a whole lot of grim determination are the needed weapons.

Somehow, you get used to these unbearable (inconceivable, perhaps?) things and find a way to live with EDS, much like Buttercup and Westley found they could in the Fire Swamp. No, it isn’t a place where you would choose to live but if you have to, well, so be it. No, you probably will not come out of it unscathed but that seems less important than it did as you entered the Fire Swamp; there is something to be said for simply surviving.

Once you figure out the tricks of managing each of the threats, they become more of a nuisance than anything, although their danger is not diminished by that perception. Like anything in life, as we face a difficulty and learn how to manage it, that issue that was once a huge problem now becomes something less in its familiarity – a pain in the butt, an annoyance, a hindrance – something to deal with so you can move on to your regularly scheduled program.

A positive attitude like Westley’s certainly doesn’t hurt as you manage the impossible, although Buttercup’s dogged realism is a necessary counterbalance. There is no place in the Fire Swamp, or in EDS for that matter, for a Pollyanna but if you give up hope, there will be none left to find.  There is also no time to bury one’s head in the sand, Lightning Sand not withstanding, and ignore the dangers that surround you on all sides. Complacency in both EDS and the Fire Swamp is a really bad idea – yes, the dangers can be dealt with and they can be regulated to nuisance status, but they must be faced anew each time.

Life with EDS is a never ending balancing act – you put out one fire and another pops up. Or you fall into a patch of Lightning Sand or an R.O.U.S. attacks.  In the beginning, this is overwhelming and terrifying. Truthfully, I don’t think it ever stops being exhausting – just like living in the Fire Swamp would never cease to be exhausting. But, as you learn to manage, your confidence grows and you know that you are capable of living with the impossible; maybe even thriving with it. And, all of the sudden, one day, you realize that you are a pro and have the confidence to face whatever the swamp can serve up…

So, in the words of Miracle Max, “Have fun storming the castle.” Will it take a Miracle? Probably, but with a little perseverance, a lot of hard work, and a bit of luck, miracles can happen and the Fire Swamp can be survived.

Iberogast

Our GI doc was extremely excited about a “new” medication last time we saw him and wanted Em to try it. In actuality, this med is not new – it has been well known and widely used in Germany for decades but has only been available in the US for a few years and has largely flown under the radar here. Apparently he went to a conference recently and became a devout believer in Iberogast – the scientific studies and positive results won him over and he is recommending it to his patients.

I was more than happy to try this herbal concoction instead of another anti-depressant which had been suggested previously but I just wasn’t sure how Em was going to view it once she had it in her hands. From the research I did as we were waiting for it to be delivered, I knew it was going to have a strong herbal taste and I had little faith that she was going to be willing to take it: It is hard to take something so strongly flavored when you are so nauseated. However, I also knew there would be a good chance that if she would actually take it, it just might help significantly.

She turned her nose up and gagged and spit it out on the first try, although it truly wasn’t that bad and she had herself convinced it was going to be horrible. It sat on the shelf for a couple weeks before she tried it again.  The second try didn’t go much better than the first.

We did eventually find a couple important clues to being able to take it. One is to take it in something the flavor doesn’t fight, something that works with the herbal taste and not against. She also eventually found that the key was for her to put the drops in herself so she could see just how little actually is used. (There might have also been a little bribery to convince her to take it, she is not above being bribed with a new pair of shoes she wants. Although, even with the blantant attempt at bribery, she also needed cajoling and gentle encouragement from various family members to give it a try.) She has been drinking  it in hot tea – she is slowly working up to the full amount (20 drops) one little drop a day. At this rate, it might be next year before  she ever gets the full dose…

However, the good news is, even with a partial dose, she is seeing a big difference in her GI symptoms. She doesn’t hurt as much, she can eat more. She is actually feeling hunger for the first time in a long time – she is unfamiliar with the sensation and perceives it as painful most of the time. And inconvenient because hunger needs to be addressed.

Another interesting side effect seems to be a calming effect and an almost immediate relief of anxiety. Again, it is hard to tease out the effects of the Propranolol on her anxiety and the effects of the Iberogast. In reading this page about Iberogast it is clear that one of the ingredients has a calming, sedative effect so she probably is feeling calmer when she takes it. Having the constant pain and nausea relieved probably doesn’t hurt either.

Anyway, once she actually tried it, she found it is pretty amazing and is hooked.  She is working up to 20 drops, 3 times a day – before meals. She is up to 15 drops, I think. It does seem to be having a significant impact and that is a welcome change. It is a natural, herbal based supplement – so while there are no side effects like we might see with pharmaceuticals, one does need to be aware of the ingredients. If you are allergic to or sensitive to any of the ingredients, you would want to steer clear of it. Otherwise, it seems to be a pretty mild, very effective way to address the pain and suffering that come along with the GI symptoms of EDS. My biggest concern about it, at the moment, is that Em has had a mast cell reaction to tea in the past and that seems to be the only thing she can tolerate the Iberogast in at the moment. But, I do think that she is seeing such an improvement  that she will find a way to take it should she end up unable to tolerate the tea.

Iberogast is rather inconvenient to incorporate into life – I can’t really imagine her being able to take it if we went out to eat or ate anywhere but home. She is able to make some tea and take it with her in an insulated cup but I don’t know how practical that is in all situations. However, I think if we were to be out and about, she might be able to just take a peppermint oil capsule in those situations and it might be enough to get her by if the Iberogast is unavailable or unpractical.

We really are at the beginning of figuring out how to use it and make it part of her daily life but it definitely seems to be worth the trouble. I would highly recommend getting a bottle and giving it a try if you have troublesome GI symptoms. It seems like a pretty easy and effective way of addressing the symptoms and the trade off of minor inconvenience is worth it.

If you take already take Iberogast, what do you take it in? What are the best ways to hide the taste for someone who can’t tolerate strong flavors (or is just freaked out by the idea of it)? What are your experiences with it? Comment to share your experiences.

GI Update

Yesterday Em had an appointment with the GI motility specialist – she had a gastric emptying study (which came back ‘normal’) in April and we were to follow up with him in July. Had to reschedule that appointment and finally saw him yesterday. I had been optimistic when he told us before the study that he would treat her symptoms regardless of what the test showed. However, the suggestion that came through when the nurse called to inform us of the results of the test was a medication called Buspar. I was uneasy agreeing to a medication that I knew nothing about, particularly over the phone where I could ask no questions, so we left it that we would wait and discuss it when we saw the doctor – which would end up being almost 6 months in the future.

Anyway, in the meantime, I quickly learned that Buspar is an anti depressant and my unease deepened. Now, I don’t give a hoot about these meds being used off label – I get that and have no problem whatsoever with it. My problem was that Em is already on 2 medications that increase her risk of serotonin syndrome and I wasn’t convinced that adding a third was wise. I was also not totally convinced that this doctor was even aware of her list of meds, although I have provided them with an updated list every single time we go. This made me very nervous. So, before we went to this appointment, I talked to the pharmacist and he more or less confirmed my concerns. 1) Buspar would definitely increase her risk and 2) if Serotonin Syndrome was triggered, it would likely mean Em would need to come off her Tramadol and Amitriptyline. That would be a very bad thing, to put it mildly.  The pharmacist basically said, it would depend on the dose and it was a decision that would have to be made during a very open discussion with the doctor.

So, I went into this appointment girded for battle – or at least prepared to firmly hold out for another option. Her eating is better but not great and any stress or disturbance sends her back into a cycle of not eating. She is maintaining her weight, even gained a little (building muscle, thanks to PT, I think) but she is still struggling with her appetite and nausea and pain. So, she needs something but not what was initially offered.

Well, imagine my surprise when he never even brought Buspar up. (This is how it always goes: If I am not prepared to fight, I get sideswiped and feel forced into agreeing to something I am uncomfortable with. If I AM prepared, what I am concerned about isn’t even mentioned. *Sigh*)

He asked about her swallowing issues, which she talked about but said were not a big problem. He offered more testing to investigate but understood when she said no. We talked about her constipation issues and he said she can take as much Miralax as needed, stating that constipation can cause the pain she is experiencing.  When we talked about her ongoing (constant) nausea and pain, he got very excited about a new herbal product that was developed in Europe and is available here in the US. It is called Iberogast and has substantial scientific evidence that it helps with dyspepsia. He wants her to give it a try before we go with any other med that will have side effects. She is not thrilled with the idea of taking it – 20 drops, 3 times a day. She is pretty well convinced that it will taste horrible but I am hopeful that it will at least be tolerable, if not fine. We will probably have to order it – haven’t had a chance to see if Walgreens or CVS would have it or not.

We see him again in 4 months to follow up. We feel pretty ambiguous about this doctor and I have yet to be convinced that he is really knowledgeable about EDS. But, we need a motility specialist and Dr. Garza (a motility specialist who IS very knowledgeable about EDS) has left Cincinnati Children’s and I have no idea who will take his place, if indeed, anyone can really take his place. It is frustrating but we will just continue in this limbo we find ourselves in and wait and see what happens on the GI front.

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