Ehlers-Danlos Costa Rica

$18,161 of $24,000 goal

Raised by 95 people in 37 months
Alix Louis  BROOKLYN, NY
Ehlers-Danlos Syndrome, POTS Syndrome and Cardiac problems... in Costa Rica.

Why you never see me:


When I was younger my parents took me to the Cirque du Soleil. I saw acrobats and contortionists there that did incredible things and I thought: one day I will do this too.  I can do that. I realized that not everyone was hyper-extensible, bending over backwards at will. It took my husband telling me that people didn't routinely pop their shoulders back into their sockets in the morning to realize just how much more flexible I was than the average person.  

I can kick myself in the head. This *does not hurt*, but hypermobility like this causes chronic pain including painful dislocations and sprains.

This is a dislocated hip.  While sitting in a chair using my computer (talent!)

DIP joints severely hypermobile, PIP  and MCP joints are moderate.  
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More than 90 degrees pinky bend

Initially, in NYC, I was diagnosed with Fibromyalgia, myositis and cervicalgia/ spondylosis, herniated and bulging discs in neck, loss of lordosis and scoliosis.

Because Ehlers-Danlos Syndrome is very rare, it has taken me exactly 10 years to get a diagnosis.  The pain started becoming unbearable when I was 28 years old.  I am also exhausted all the time, but I can't sleep.  10 years ago I was very close to getting the right diagnosis.  The palliative pain doctor said I have "sub-clinical Marfan" because I was not tall enough - I don't have "marfanoid habitus."

I noticed on family vacations that physically, I was in much less pain in the Caribbean.  We started traveling there every chance we got (on a New York Salary...).  We moved to Costa Rica because I was having intense pain in my neck and shoulders from the winters in the US. It became impossible for me to turn my neck during that season. Only the constant temperature in Costa Rica, and the Caribbean Sea, have allowed me the freedom of movement that I now have, but every comfort comes at a cost.

I have Ehlers-Danlos Syndrome (aEDS) - Arthrochalasia type (rare mutations on COL5A1 - Classical Type - as well as on COL1A2- Arthrochalasia type as well as mild Osteogenesis Imperfecta.  OI explains all the broken bones as a kid, but also as an adult, including my arm, shattered in three places about 18 months ago that is not fully healed and my big toe, which is closer to two years, which is still very painful) as well as mutations on COL11A1, which is Stickler Syndrome, Type II.  I have not ruled out Vascular Type EDS yet. Unfortunately, that one is deadly. The combination of these three mutations doesn't have one name yet.   

I have cardiomyopathy . I have to get an echocardiogram (heart ultrasound) every six months.   This has to take place in the capitol city, San Jose, which is 4-6 hours from my little beach town near the Panamanian border.

Update: My aorta is 1mm enlarged in 18 months.  That is normal for a 10-year period.  In other words, I need more monitoring and better control.  My cardiologist knows nothing about collagen dysfunction or genetic collagen diseases and as you will read in my most recent update, most doctors know nothing about my illnesses because they are very uncommon.

I have had Dysautonomia throughout my life.  I have always known I had strange body temperature problems (I am completely at the mercy of external factors to help me, like a newborn, I cannot regulate my own body temperature.  Never have been able to), but now I know it's connected to the severe tachycardia, lack of sweating, blackouts, palpitations, etc. wrapped up neatly in what is called Postural Orthostatic Tachycardia Syndrome (POTS).  My heart problems are being monitored every six months and I am taking a beta-blocker that helps tremendously.  I've also received Amitryptaline for my Poly-Neuropathy (both lower legs and feet as well as my left hand were going completely numb for days at a time) and about one month ago I stopped having symptoms of that; no more numbness, tingling and my toes even wrinkle in the bath again!

Update: I have switched to Lyrica, which caused me to have blurry ision for a month and still causes insomnia and hypoglycemia.  I don't like it (and it's more expensive).  This is known as a paradoxical effect: most people get sleepy from it.  I do not process/metabolize medications normally (confirmed by genetic testing).

I have had to extend the campaign and it's now the 2-year anniversary of when it was created.  I completed a new Social Security Disabiliity application a few weeks ago and am in contact with the right places and sending forms and records already.  Since I am already declared disabled in Costa Rica, I hope to receive relief soon.

We have had to close the almost 5-star (4.8!) restaurant because I can no longer make ice cream.  We get people every week asking us why and when we're re-opening and if we have any in the house they can just buy.

Of course, it is expensive to go to San Jose with the family and back every six months (no car- we take the bus) and stay one night, which is too exhausting already, include food and taxis. We are typically required to get two rooms as we are five people.

One particular painkiller I take 3x/day costs $700/month for me, but that is far from the only thing I need to take. That is just the most expensive one.  Add Tramadol for breakthrough (nociceptive) pain, bisoprolol for tachycardia/to keep my aortic root from dissecting, Lyrica for nerve pain, Ambien for sleep, Diazepam for PTSD and anxiety from the tree... we're nearing $1000/month.

Without oval-8 finger splints... which really are supposed to be replaced with sterling ones.

Update: I have received my first silver splint!  I love it!  (They are $89/ each + shipping + tax).  They stay on and don't remain wet for an hour after washing my hands, etc. and don't fly off because they are custom-made to the millimeter.

Update 2: I have a set of well-fitting childrens' sterling splints!  The gauge is smaller so they don't get caught on each other or make me feel like Edward Scissorhands (he's cool though... I can't complain too much about that one).


Gotta order ones (spiral splints) for the thumbs. This does hurt.
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With splints, I can grasp.
7714383_1450476305.1579_funddescription.
To manage my Ehlers-Danlos Syndrome, I need to wear finger splints because my fingers have gotten much worse over the past year and they prevent me from gripping anything. Add to that the pain of relocating dislocated shoulders, knees and fingers, I need a few more splints to stabilize joints. At least I'm not in a wheelchair (yet).

Please consider helping us financially to help treat my diseases.   Imaging in particular is scarce and expensive.  In the public system, I will not understand them fully and they will not understand me completely either.  I'm working on it (my Spanish).  Each MRI costs $1,500.  Each x-ray $80.  Each specialist consult $90-120.  All of this is only available in San Jose, a painful and costly ride. Not to mention we have to close our restaurant while we're gone.

I have scars all over me because my body produces defective collagen - 80% of what holds the human body together like glue.

"Fishmouth scars" are a daily occurrence.  I get these "micro cuts" from anything.  Soap. Sand. Salt. Foil. Paper. Literally anything, because my skin is so fragile.  The collagen defects cause very slow, open healing, leaving scars in a circular formation.

Atrophic Scarring - I never heal.7714383_1450479943.6534_funddescription.
Nobody can do this (no, I don't practice yoga- it's bad for my over-flexibility).

Hyperextensible skin (and all those scars)

Flexibility, but also redundant skin folds at elbows shown

Collapsed hand- this is called a "positive thumb sign".  One doctor sais in a book I read that you can learn to tell who has EDS by shaking their hand. I believe it.
Please share.
Everything helps!

Love, Alice (December 2017)
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Update 48
Posted by Alice Lewis
11 months ago
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Wow. I doubled the goal and I'm very close to that in the grand scheme of things.

I am communicating with a pain and palliative care specialist in SJ at Clinica Biblica who is also an anesthesiologist (he's not afraid of strong pain control... but I'm not sure what he means by "minimally invasive"), as well as a new Cardiologist who has asked me to send my reports before the appointment so he can be prepared, which is a really good sign.

I've applied anew for disability... who knew you couldn't take time off to raise your children and still be handicapped to receive the benefit? I have enough credits now though, thankfully.

I'll meet with my Rheumatologist as well.

But of course.. We need your help to do it. It's not daily living. It's not christmas presents and school supplies or the lawsuits. It's my quality of life we're playing around with here - and frankly I don't want to play around anymore. The big guns are coming out. If this last attempt in San jose with the pain specialist doesn't improve my quality of life, I will be going to the states for proper care. Which will be a heck of a lot more expensive than SJ.

I also got in this mindset of "thinking myself better." Well, all I can say is: those books make you feel like a failure when your diseases are genetic. If anyone wants to borrow kindle versions of "mind over medicine" or stuff like that, raise your hand (some of them are not allowed to be lent, but i can try. Just don't waste your time if it's not modifiable by diet, exercise, vitamins, losing weight...)

So, after about all these years this is still an issue, of course... it just has a name that I've known now for a about 2.5 years years (this page was created in Dec, 2015).

Today, and every morning, I am deaf in my left ear. Does anybody know what this is? I assume it's due to the tachycardia, but maybe there's a blood clot or something? It's just really weird. I am extremely dizzy too. People don't seem to understand that my legs work- I am just much less likely to end up on the ground if I have something to lean on and turn my head upside doown - or have a chair. The rollator had prevented a few broken bones from falling already.

I'm sorry Genetic diseases don't just get solved.
I am sorry I am not better.
I am sorry I can't call myself "a survivor" - I will *never* be "a survivor"
I'm sorry I will be I will be fighting this my entire life.
I wish I could eat myself better, but I am already 95% vegan (and have been for decades).

There is nothing left for me except to try to improve how I feel every day without feeling guilty. I wake up every day and all I feel is guilt.

I made it through those 30 days, but I did get a severe concussion for about 20 of those days. I don't remember when or what really.
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Update 47
Posted by Alice Lewis
13 months ago
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Yesterday my right leg seized and cramped very hard and painfully for 2-3 minutes. It started while I was lying in a hammock with severe tachycardia. I wanted to stay near John because I have been having trouble keeping it under control since the pericarditis and fear permanent damage may have resulted. I stood up because my hips started hurting and then incredible pain took my right leg.

Today, my right leg feels like a very deep bruise from the back of my right foot all the way up the back of my leg, under and around my calf muscle on both sides, stopping below my knee. There is a well known correlation and the FDA had a black box warning on Fluoroquinolones for causing tendon rupture. Yet... I was prescribed it for a heart infection (pericarditis)-not a sore throat or something stupid. I don't understand how my doctor here in Puerto could prescribe this to me-he knows I have EDS (he claims his ex-girlfriend had it, but didn’t know what type). Shouldn't he know better? I couldn't breathe, the squeezing was painful and it was migrating down my left shoulder. I thought maybe I was having a heart attack. Then I noticed it worsened laying down and eased sitting up, leaning forward. Pericarditis. Then it happened on my right leg and hand this afternoon.

I am no longer taking antibiotics and my heart infection seems better, but I wonder why my heart rate fell to 31 while I was awake watching a movie this evening. I have never seen it go below the upper 40s even in my sleep. I also did nothing except fold a little bit of laundry due to all of this.

I don't think the doctor who prescribed this will be helpful with this situation. I assume I am to add to my medical bracelet NO FLUROQUINOLONES - even my Aunt had this happen to her achilles from them last year and I WAS warned not to take them. Presto- of course I got it. I get all the weird side-effects. And I don't metabolize medication properly, recently confirmed by genetic testing.

Is there treatment? I won't know until I find a new cardiologist. I need a new echocardiogram to see what permanent damage there is. There doesn't feel like an infection is still present and I feel that something is very, VERY wrong.

I also have a new formulation of extended release Oxycontin that could be messing up my heart rate.

Obviously, I am concerned because it looks like my heart is freaking out and I am going to die. It seems to get worse every day and has been moving this direction for a few weeks.

There is no cardiologist in puerto viejo and I highly doubt Limon will have anything decent. I need a cardiologist who knows about Marfan Syndrome. I feel like I am not going to make it another month. The pericarditis was extremely scary. I heeded my aunt and mothers' warnings: no floxacins. So, I grabbed zithromax to change to once the pressure and pain from the heart faded. I wanted as little as possible. Little did I know that the FIRST TIME I didn't look up a contraindication there is one: zithromax *causes* paricarditis. The pain started coming back. I jumped back on the cipro. I didn't want to die.

This is very serious. I have never seen my heart rate in the 30s- it was almost in the high 20s (31 while watching the Lord of the Rings a few hours ago!?). I need it figured out.

The extended release meds have to go. And I need an echo and a brain scan. Attacking my nervous system could originate in my brain, where there IS a tmor, so, not looking at that since leaving Brooklyn is negligent. It's just expensive.

Please hlp us make our biannual pilgrimmage to San Jose. I am not exaggerating: I don't think I am going to live another 30 days. I even got a better heart rate monitor... it correlates perfectly with the fetal doppler when I put it on my heart, as it should. In other words: It's accurate, which is scary as hell.

I have applied for SSDI anew and finally have enough working credits from the immediate past 10 years. I even did my taxes last night, but they aren't ready for self-employment e-fileing until January 4th and home office until January 11th. Bastards... I wouldn't need to beg for money if I was getting a refund in 3 weeks. Though that's pretty close anyway.

Merry christmas and hopefully a happy new year. It was WAY better than 2016 and although my health continues to decline, I appreciate it more and more. It's just not right to not have doctors that know how to help me. I have some good ones, but I need more specialised. Internal medicine and pain management can coordinate and hopefullly find me some generics- especially with this oxycontin scare. I can't take extended release anything- not tramadol either. Every 4 hours is me, the rest of my life (or an implanted morphine pump. Except that probably involves surgery, which I can't have anyway!)

Please, if you can, think of me and my family this year if you do annual donations. Even if you don't... if you can help us, we need to continue getting to the bottom of this. I have hopes social security will take over this time as I was already contacted (applied Dec. 19) by San Jose Benefits office and was set up with the international benefits office. And, as you may know already, we had to close the restaurant because I can no longer make the ice cream. My day-to-day life is too unpredictable (and I am so done with neighbors and fake reviews). Closing with a 4.8star out of 5 after 6 years is an admirable thing even though I feel terrible about it. But I need assistance immediately. If I die, think how much help John will need : / He's working, but it's not a New York salary or anything remotely close.

Without further ado, here is the chart for my heart rate today. Note that while I was sleeping, my lowest HR was 50. It went to 133 while I was folding laundry *sitting down* - it looks like I was running around or something all day because of my heart rate skyrocketed like that, even though I was sitting. THEN, note I almost flatlined while watching a movie with my family and one of our closest friends. I don't notice the slow beats. They feel good. - relaxed and peaceful. I will never notice if I am dying from bradycardia, which this should definitely qualify as. There's a 102 bpm difference- it jumps all over the place. this is POTS with EDS and something else going on. It's new and scary have a look. That's all I have to say for now. Let's get me to the doctors... at least 2 new ones and visit my rheumstologist for the biannual. I'll at least need an Echocardiogram, they will want me to wear a 30 day holter, but I'm horribly allergic to it and cannot- 24 hours was brutal and they found left ventricle problems, reversals, extra beats and diagnosed Sinus Tachycardia. I want to see a pain specialist who knows about EDS and a cardiologist who knows about heart problems that occur with EDS.

Thank you for reading and for your continued generosity. I can't believe it's been 2.5 years since my diagnosis and this is my 24th month of fundraising.
EDS & POTS + Pericarditis or death
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Update 46
Posted by Alice Lewis
14 months ago
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Things are bad with health issues. I should probably overhaul the entire page with photos and written information since much has happened and has been learned in the 2.5 years since I was diagnosed with EDS. This is a "just for now" update. I got a message from these guys I should update, so here it is.

I can't move very well. I do not have a purpose in life except my kids. My neighbor is out of this world off her rocker crazy. We closed the shop because of road construction coinciding with a job offer for john that is now over. But, I lost ten lbs. r so since not making ice cream. Turns out, I used to eat a lot of it. IV coconut milk? They used to use pipa water (young coconuts) as IV fluid... I will just drink it, like last time I was hospitalized. Which actually was only about a month ago? I had a 104.6 fever or omething. Not as high as the hemorrhagic dengue and it spread through the family. So, the water tastes like a dead dog, I kid you not. I suspect "Lady" is buried on our property and has worked her decayed self into our water. see second photo of the coil that brings water to the filter in the freezer... It smells and tases like a wet, rancid, smelly dog. You can smell and taste it for yourself if you want. We are not drinking it anymore, but we all slept for 6 days (except Jackson, who only drank water from the upstairs filter - pur -, which I declared inferior to this $50 one in the freezer). It wants 3 photos. Let's see...

Photo 3 is my sprained ankle accompanied by a bruise with a gash in it. Just another day though really. Every day is another injury and another one shifts to the background. I need something I am missing. Peace, I think. Real medical care? Stressful, but possibly helpful. I would like to go to my friend Dan's Pain Specialist in NYC. Raising money for 5 plane tickets roundtrip to NY via toronto and Amtrak is the new goal. I need to get SSDI moving and I feel like going to the office in the states would be more effective. I have the best doctors in Costa Rica, but how do they rate compared to the best rheumatologist in NY? Probably well, actually...

I need a brain MRI. It's been since 2008. I am losing chunks of time and don't remember things I should remember.

And I do have to say this: being a cancer survivor is nothing compared to living with multiple chronic genetic diseases with no treatment, only palliative care. There is iterally nothing I can do to help myself except swim. Try staying happy and healthy that way. Something needs to give...

I'll post a better update- an overhaul to the page/site since it's been the same since december 2 years ago (well, It's almost december, so I'll call it 2 years).

I've learned a lot. including that my daughter and middle son are as affected as I am. My oldest seems to be more like my sister (marfanoid) and definitely has fibromyalgia. He has a lot of pain and does not sleep. They're all happy and don't think they are sick or anything- and I don't want them to live that way. I have not had them diagnosed and am unsure if it is a good idea. I don't actually like doctors and I am a minimalist. Stamping them with such severe diagnoses at such young ages needs careful consideration.

I have currently: a dislocated right thumb, right hip, right knee. Inability to turn my head to the right. Inability to sleep any way except on my back, which causes me to wake up choking and panicked. Sprained ankle. Many bruises. The dislocated thumb is the biggest pain and it throbs even when I am not moving. Actually, my neck is always the biggest problem but I am used to it. I am so used to it, I forget to put warnings about neck trauma on my medical id bracelet. I probably need 12 of them. But I'll stick with my name and a phone number.

I got my 3 photos. I hope you enjoyed this update. there is a lot I'm not saying because I can't. Some because I don't want to admit it. Some because I am afraid it's true. Some because I am tied and should go to bed. Laptops are awful for necks, but the power surges here don't allow for desktop computers without an independent power supply. UPS? I forgot what they are called. Another reason for the need for a brain scan: I am losing words and my hearing in my left ear is gone every morning.

I hope everyone is well. I am sorry that this is a gofundme page.... of course it's all bad medical updates and not much good news. That's what emergencies you don't want to write "Emergency" for look like. When I see photos of myself when I first moved here, I am unrecognizable. 7 years is a long time, sure. But the deterioration is rapid. I need to find a way to stop that and that begins with more food that I can eat.

We currently have no income because john is between jobs and we're afraid to be open due to the death threats. Interviews are happening. Court is looming and highly in our favor. The neighbor ran away and filed a counter-suit. It's pitiful and doesn't include anything. Same old excuses. When I wake up early enough I have the key.

So much to do- so little energy. And counter-forces are way too strong for me. I did not study judo. I need x-rays, but I don't know where to get them anyway except the vet. money to do that? I guess when John gets hired. Because I don't know what is broken. I am walking on broken things, using broken wrists and fingers and dislocated shoulders, thumb... there is too much. Probably one of those full-body scans and I could say I'm a cancer survivor too and everyone would finally leave me alone. People get offended when we (chronic pain sufferers with no cures) say it's worse than caner. It is. Think about it. It's stupid- I need social securoty (maybe that's why she's mad at me? i still don't know why I am the target and not john- it's always the woman the women go after... men don't care at all. Except Ed holding an axe to me and the video Esteban Aguilar has of the assault and battery with Clay Hansen, the sex offender from florida). We are still waiting for ICE to confirm it was Melody who left the disgusting answering machine messages and told my daughter she was going to kill her kitty cat and send the boogie man to kill her that night. Luckily I had it on speaker phone and recorded the entire sick thing. I will post that. Maybe open forum will recognize the zombie voice. And the random "Fuck you!" stuff. So: alf my life I am asleep. The other half I am supposed ot be healing but I have to worry about no income and lawyers and idiotic neigbors who have nothing to say except make fun of my hair and try to convince me I never went to my alma maters. They got nothing. I don't lie. It's a unique trait, especially here. I wonder if Carol got off her manic rant yet. I don't actually care. I am sick of takling and thinking about people. I am an idea person not a people person. And there's nothing wrong with being an introvert.

Wish me luck, sponsor me... help us. Send a job for systems analyst or drupal developer remote our way. It seems like a mountain right now. I want to spend my time with my children, not worrying. It is killing me faster. My kids give me life. I want to take them far from this place.
Update: I'm not okay, see...
Our dinking water
Sprained ankle. Nasty cut & bruise.
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Update 45
Posted by Alice Lewis
16 months ago
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I love that my rheumatologist calls my conditions "annoying together" :D

Now if only I was allowed to leave my fucking property. It's scuba/swim time and I have kiddos all day while John works.

I wake up tired and in pain. It is never different. The lyrica started causing insomnia again, so I'm taking it in the morning now... which makes me feel like I am dreaming all day.

I am building a float tank come what may.

---

Hello Allison

Good afternoon.

Sorry for late replying, I've been outside the country, and right now I'm doing some big changes in my private practice.

Honestly your case is really complicated, besides the EDS, you have fibromyalgia as well, and both conditions are pretty annoying together.

Fibromyalgia can cause many different symptoms as dry mouth, dry eyes, headaches, stomachache, intestinal bloating, chest pain, numbness in hands and feet, and many more.

It's really important to try to control stress, anxiety and depression, but I know it's not easy, and both conditions (EDS and fibromyalgia) feed negatively each other. Try to do some aerobic exercise as walking, acuaerobics, bycicle, and try to start slow, and be constant. It could be good if you find out some relaxation techniques, as they will help you to feel better.

Furthermore, your condition it's not easy to treat, as you're very sensitive to usual medications.

I don't think there's a problem about finding a new cardiologist, just remember you have to be checking your heart valves and aorta/aortic root for further enlargement.

Have a nice day and I will try to send you the insurance form in the next days.

Dr. XXXX
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Read a Previous Update
Karen Serpe
27 months ago
1
1

So sorry, Allie :( Wish I could be there to help you.

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$18,161 of $24,000 goal

Raised by 95 people in 37 months
Created December 18, 2015
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Adam Smith
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$100
Joe Saul
12 months ago
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$100
Adam Smith
13 months ago
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$50
Margaret Bumby
13 months ago
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KS
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Karen Serpe
13 months ago (Offline Donation)
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I forgot to put this up from June/July... Thank you (-A)

DR
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Anonymous
13 months ago
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DR
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15 months ago
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$300
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15 months ago
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Anonymous
16 months ago
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Karen Serpe
27 months ago
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So sorry, Allie :( Wish I could be there to help you.

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