Food Lifestyle Journey; FODMAPs, Histamines, Healthy Diets and More

Over the last two years I've been on Modified GAPS friendly, Grain free, Sugar-free, High sodium, Allergy Free, Low Histamine diet regimen. Recently within the last 6 months also going, Low residue and low fodmap as well as keeping fairly low histamine. But with the aid of H1/H2 antagonists. 

What’s highlighted I can and do eat 
and what has a star is high in histamines
 to approach with caution.

It is an adjustment and yes it's restrictive but...

1) Take it slow and go one by one eliminating most reactive foods.

2) Once you're off it while you stay off it until you feel you are ready 

3) Slowly add back again and see what you react to the most. You can find out what are your higher trigger foods and you could be weary of those or have less of that in your diet.

4) Be Patient with yourself, it takes time to figure out what works best for you. And it is a continuing process.

You'll see if it works for you and if it does it will have all been worth it. 

I began my journey with GAPS and the healing your gut through diet over 2 years ago before my EDS diagnosis when I was just trying to figure out how to cure my food allergies. Suddenly I couldn't even drink water without horrible pain in my stomach, and I wasn't having it, also had no health insurance so I had to figure it out myself.   

I bought the GAPS book and had been studying it. I made many bone broth's and went grain and starchy vegetable free as well I was already all allergen free for year prior. My allergens are gluten, dairy, eggs, soy, pineapple, goat and Oyster. Also Benadryl, yes the allergy medication! I also knew that nightshades are triggers for me. And I recently learned root vegetables seem to cause a lot of gas, bloating and pain as well, but nothing like as bad as the GP related Slow Motility pain. I am so fortunate that I do not have the vomiting aspect of this condition just very severe nausea and pain. I Stayed on a modified gaps like diet adding in all the new things I learned over the years. Like the need for 8-10 grams of sodium a day and to pay attention to Histamine and FODMAP foods. 

I six months ago I went into a really bad flare (after going across the country and eating lots of "travel food" when I returned I could not tolerate soup or anything more than ginger hard candies for several months and I am now on a even more restricted diet like in the photo above. Low Residue, Low FODMAP, Semi Histamine, GP Friendly. Currently I've been able to reintroduce my soups again and I've noticed when well boiled, I've started to tolerate vegetables like zucchini, kale, green onion tops, carrots and celery again. Not eating the celery but for the flavor in the soup. I've been off most vegetables for a long while and unless it's been cooking in a crock pot over 6 hours on High (or 10 hours on low) it's going to hurt my stomach. (My dietician told me cooking with onion in a strainer bag allows the flavor but also keep the fructans out. which are the FODMAP triggers. I have yet to try this)

What I learned now is that the chicken skin d needs to be removed prior to cooking for me otherwise the soup is too fatty and I cannot get it down. But it’s been going really well with the organic chicken thighs. 1 in a small crock pot makes enough soup for the day with some leftovers occasionally. Approximately 24 oz, I can also now handle organic (beef and Bison) hotdogs and ground meats low in fat like bison and ground turkey. These are low fat and low residue examples of meats I can tolerate with little to no pain. It is really important if you're dealing with slow motility or gastroparesis like problems to stay low residue and low fat. But to keep in the healthy fats!  I personally don't have the vomiting aspect of GP but I have the severe nausea and severe pain.

Taking H1/H2 histamine inhibitors for Mast Cell Activation Syndrome has allowed me to introduce more higher histamine foods back into my diet including canned fish like, Wild Planet Tuna (found at COSTCO) and Sardines (High in Sodium for us POTSies and full of all kinds of healthy nutrients and fatty acids) I have even began experimenting more with some corn puff cereal and corn chips on occasion as well but do have a slight reaction. Grain free is the way to be. 

Eventually I plan to progress to reintroducing garlic to see how I react with just the one new addition to the soup. I’ve also been off all dried spices for the last year and I am now handling one peppercorn added to these soups. It’s a slow process and while it is restrictive. It’s been 100% worth it. If it helps you you'll know that it's helping you and that is the whole point!! To get some relief!! 

I haven’t cured anything but the pain is much more manageable. (Note: I also use iberogast and ginger extract supplements before meals but not every time anymore)

Keeping on broths all the time has been so important! The key for me is there are certain parts of animals that can cause reactions, almost all cuts of beef for me now unless it’s really processed like a hotdog. Unfortunately Trial and Error are all we have for this.  I stayed away from chicken for a year and then I had organic chicken broth made with chicken breasts and then the whole chicken carcass but now I'm only accepting chicken thighs and that working out really well like I said. 

In the FODMAP category I notice I react mostly to the fruits like apples and pears, sometimes with mango and watermelon, honey, beets, leeks, onions, beans, Any FODMAPS in excess really. Also dried fruits, (this could have something to do with the sulfates) I have been put on a partially liquid/ soft foods diet due to dysphagia and have been following gastroparesis friendly rules, which allow for ground meats and canned fish which are High Histamines (I had a harder time with prior to the H1/H2 Combo) I noticed many Low Fodmaps are GP Friendly but are not Low histamine so it can be a struggle at first to find what you can accept

My Tips and Personal "Rules"

• NO RAW WHOLE NUTS EVER. Not even one! (not allergic just  difficult to digest) 
• Homemade almond milk from one cup almonds for 1 quart of milk is good and Honeyville almond flour is also okay in small amounts. 
• Bananas cause bloating and do not curb hunger
• Avocados cause pain like bananas do. I stayed away from them or stick to 1/4-1/2 of one. 
• Spinach less than 1 cup steamed or MCAS triggers.. Must be well steamed. 
• STAY AWAY FROM all known allergens cause (they cause massive inflammation in me)
• No Fermented Products. I stay away from fermented and cultured foods; foods still too high in histamine or meals or days with too many histamines cause they build up and will trigger a MCAS attack.
• Onions are a problem but I can handle green onion tops as per the gastroparesis friendly diets
• Grain free has helped me a lot with most of my stomach problems. I have recently allowed rice protein based drinks into my diet and I must water those down and some corn based products like chips and cereal because this is so restrictive and they are FODMAP okay and I need the calories. But I do feel these cause some problems but are the least reactive of the grains.  

These TIPs have helped me to fight against the treacherous abdominal pain, bloating, gas, difficult bowel movements and general discomfort. Still fighting hunger and fullness while hungry it’s a continuing process.

I was low to no histamine diet for over year until I started the H1/H2 combo at the recommendation of Dr. Pradeep Chopra a very knowledgeable doctor on EDS/MCAS/POTS/GP Matters

I use liquid children's Aller-TEC which is Centrizine or Zyrtec and I take that with a RX ranitidine also known as Zantac 150 mg twice a day together. That’s the key otherwise it does not help! 

What it does help with is the headaches, stomach cramps, digestion problems, spontaneous sweating, itching and rash attacks. It's drastically decreased in these the last 4 months. Although make sure if you take the liquid zyrtec that it has SUCROSE not SUCRALOSE... the later is a poison and was destroying my system when I was accidentally taking it for 2 months

Once I got that figured out it has allowed me to eat higher histamine foods or rather smaller histamine foods throughout the day/week. Although I'm still struggling I am bringing back some foods and figuring it out with others but the most important thing that I can’t stress enough is soup soup soups!!!

For me GAPS Intro concept has always been what I go back to. Those broths and their healing powers. They're helpful and even my dietitian wanted me back on soups... I've been ordered on a partially soft food liquid diet. So this is really important. Bone Broths helping to heal the gut is proven to help alleviate multiple illnesses and systemic G.I. problems as well as much more. It always comes down to good gut flora. This can be quite difficult to manage.

RESOURCES I USED

The wonderful LOW FODMAP LOW REISUDE GP friendly chart that’s not marked up is available to print here: http://blog.katescarlata.com/wp-content/uploads/2013/05/GP-FODMAPs_2013_Final.pdf

I found the above chart on this blog post which was helpful to me when I was in the researching stage: http://blog.katescarlata.com/2013/06/20/gastroparesis-and-fodmaps/

Stanford Breakdown of What kind of Sugars is in certain FODMAP foods:

https://stanfordhealthcare.org/content/dam/SHC/for-patients-component/programs-services/clinical-nutrition-services/docs/pdf-lowfodmapdiet.pdf

Great FODMAP Breakdown of what sugars are in what foods: second page:

https://www.sportsdietitians.com.au/resources/upload/110518%20FODMAPS%20Fact%20Sheet_Public%20version.pdf

Low Residue/High Fiber Handout:

http://www.mc.vanderbilt.edu/documents/digestivedisease/files/High_Fiber_Handout.pdf

GAPS: What can I eat Accepted and Not Accepted Handout:

http://files.meetup.com/2823572/GAPS-Diet-Foods.pdf

East Coast Medical Excursion Part II

Part II: Maryland to Rhode Island and Home

This is the continuation of my trip back east in October 2014 that originally started as a 9 month wait for an initial consultation with Dr. Henderson. To see the first part of this trip and a blow by blow of the craziness and what went down first hand click here

Booking Flights to Rhode Island; It's a small world after all:

Raised Legs/ Bulkhead Seat

Landing in Providence, RI

I flew Us Airways cross-country from Oregon to Maryland and they were very accommodating the whole way making sure I had the bulkhead seats on every flight (to accommodate the need to keep my legs elevated and because I'm 6'4" and cannot fit in a regular seat) . I also had wheelchair assistance in my own chair.(Medicaid transport covered the plane tickets too!) So when I needed to change my return tickets and make them leaving from Providence, RI instead and then ordering tickets from DC National Airport to Providence I called Delta to explain the situation hoping of course to pull the right strings and get this taken care of quickly, since it was in a matter of days. Well I finally spoke with a Manager and she was out of Wisconsin or Colorado somewhere in the Midwest and we got to talking and I was explaining about the constant movement of my joints and why I was in Maryland and why I was going to Rhode island and I mentioned it was called Ehlers-Danlos Syndrome and it turns out her and all her kids also have EDS   (a much much less severe case, but painful none the less) It's really not all that rare!Why can't the medical system figure that out! Anyways she was wonderful and did the impossible and was able to change my ticket and I don’t even think I paid for my flight to RI... I never was charged! It was such a blessing the whole experience from getting a return email from Dr. Chopra himself and an appointment rushed the next week, to the phone call going so well after fighting with other delta employees who said I couldn’t change the departing location of my flight home. It worked out beautifully.  Go Us Airways the only airline I'll ever use from now on if it's possible!

Dr. Murdoch; Urodynamics Study: The Monday after my appointment with Dr. Henderson I met with Sheila the nurse who takes care of the urodynamic studies at Mid Atlantic Urology Associates in Maryland, she performed the complete study unlike my previous one in Oregon which was incomplete because I was unable to void both 27 ounces and/or 7 ounces (back home they didn't want to push my bladder any further even though I know I can hold up to at least 40 oz. Anyways this time (since they are familiar with EDS Bladders) they pushed me to 32-34ish ounces and I was able to void, so instead of  Nuerogenic seeming bladder that the previous study indicated I guess I was actually diagnosed with a sphincter dysfunction and prescribed .4 mg Tamsulosin or Flomax by Dr. Murdoch. I have only begun recently taking this since the dysfunction has become more prominent and painful. (stabbing pain, feeling the need to go but can't, feeling super full but only have drops left, etc) Financially this appointment was a disaster at first they weren't going to except my approval from insurance (out of state Medicaid) for the appointment so I gave them $700 out-of-pocket  as agreed upon (total eventual being $1,000 cash at the appointment) by the end of my appointment they said they had accepted my insurance and gave me my money back! I was shocked! I mean I was on the phone with my insurance case manager but I still didn't expect that to resolve so quickly or so I thought, but when I returned home I received a bill for over $4000 and I had been receiving phone calls since apparently whomever is in charge of billing over there is not on it and its March and insurance still hasn't been billed! They aren't calling anymore but it’s such a mess, they didn't have my insurance info and they claimed then they did, and I gave it to them several time and then they didn't submit, and honestly they need to do that or they may run out of time! So that mess is not yet been tied up and I don't know what's going on with it now but someone at my insurance company is handling it I think. I hope. Anyways back to the treatment part of this. I have tried the tamsulosin on sporadic occasions since I’m supposed to take it after a meal (30 min to be exact) and I’m not really eating much till nighttime and then I don’t know if I should take it because it says in the morning and I don't even eat for the first time till like late afternoon or nighttime recently. Plus since Dr. Murdoch isn't my treating urologist I have been waiting to see my local guy and discuss options and how I should be handling this, and if this pill is that important with food and timing. I see My local guy in April, pissed I was supposed to go this week (March 6th) but I caught a cold and after waiting 6 months for this follow up I had to cancel! Bummer! The only reason it's taken so long to follow up is that Murdoch’s office kept not sending my records over. it's only 1 page! That’s all it was and it took 5 months to get! So ridiculous but now he has all the notes from all three appointments back east and it should go smoothly from here on out, Just gotta make it to my April appointment. 

Compassionate Care Award
Dr. Pradeep Chopra,
Pawtucket, RI

Dr. Chopra; Suburb EDS Pain Specialist: Let me start by saying that this was the best appointment I have ever had with a medical professional ever!! There really is a reason why he's won the compassionate care award twice in Rhode Island and I wouldn't be surprised if he won again and again! Dr. Pradeep Chopra is the kindest smartest most knowledgeable doctor/pain specialist. Period. And when it comes to Ehlers-Danlos and complex regional pain syndrome he has seen, treated and given countless talks and hours worth of advice to patients. Both online and in person. He is very aware of  CRPS/ EDS their commodities and therapies that may help. He is one of the foremost physicians in the country using Low Dose Naltrexone for treating serious chronic conditions. For me in particular my mom and I went in and he spent six hours with us thoroughly going through and explaining in detail to my mom and I in layman's terms what's really going on with me. He diagnosed me with Marfans, EDS Classic Type, Mast Cell Activation Disorder, Gastroparesis/ Slow motility, he validated POTS/ dysautonomia (and said DON'T get a Tilt Table Test, its miserable and not needed) as well as he gave me a different term for what was going on with the knife stabbing in the back of my head which Dr. Henderson diagnoied as Occipital neuralgia on the left and prescribed a nerve block, but with my steroid experience in the past I was very against a needle in my skull, and Dr. Chopra agreed, he said it likely would just make it worse as I had suspected. (love this guy he really listens!) Dr. Chopra did test for Occipital Neuralgia on the right as well and it was painful and a positive too (the test is just putting pressure with your thumb on the Occipital region and pain especially that runs up behind the eye is positive for Greater ON, if not behind the eye it's Lesser ON (not that the pain is actually any lesser, bad joke) However Chopra he does not believe that the stabbing that was consistent on the left was ON but rather simply neurologic pain and muscle spasms pulling my shoulder out that caused centralized nervous pain to  run down into the shoulder and whole left arm (I mean come on guys I haven’t been able to wear a bra or clothing on this arm/shoulder in over 18 months! Something’s gotta give) He doesn't believe that it's really true CRPS either though there are several indicators for it that other doctors have mentioned (slowed hair growth, color and heat variations, extreme pain, unable to use, inflammation) I mean I know it’s the constant trauma from never ending subluxatons that’s caused it, I just want it to stop so bad!  Dr. Chopra used an infrared surface thermometer on my arms and it showed 1 degree of temperature variation which apparently is also an indicator but he prefers it be more than 1 degree to make the DX which is all good by me, although he still write it down in my notes. 

Close up "We-Fi" With Dr. Chopra

I went to Dr. Chopra planning to talk about LDN and he was excited I was already aware and interested (I had been trying all last year to get a local pain specialist to rx it with no results) He  prescribed LDN  for me at 4.5mg and sent the script off to belmar pharmacy in Colorado where they know how to formulate it the right way with no bad fillers or anything. It arrived the week after I got home and  has helped decrease the stabbing in skull (neurologic pain) within about 10-12 weeks of starting it but not with the tethered cord back problems or shoulder issues  He recommended I start Sublingual Vitamin B Complex 2,000 mg, Vitamin C 500 mg, Chealated Magnesium 500 mg and Alpha Lipotic Acid 200-400 mg (solgar brand) to use only liquid or powdered supplements/ meds and to crush or open all tablets/capsules  as long as they aren't time release, and he also RX'd Zyrtec and Zantac 2x daily (morning and bedtime) for MCAD. He recommended Knee Braces for Patella stabilizing and to prevent hyperextension, and Fibula rotation. Other suggestions where compression gear, aqua therapy, propreception exercises, sitting on a yoga ball and to keep moving when I can but to never push myself, and to only do 1/3 of PT or any exercise I’m given to try. I also need to see an ophthalmologist to look specifically at the shape of the conus and something else it is all in his notes.. his 13 pages of notes THIRTEEN PAGES! He also had wrote some notes for me by hand to take home and directed me on what parts of the conversation to records. I got myself a detailed plan by one of the best!! I knew this was the best thing I could have done! I now have a serious professionals opinion and a plan laid out for my drs back home and they can also have someone to reach out to familiar with my case who could help guide them if we get into sticky situations we can’t handle on our own out here. Just knowing he is an email or a call away is such a relief! If you can get to see him you should he is worth it! Oh and of course he feels strongly I need to follow up on Occult Tetherd Cord Release and Cervicle Fusions later with Dr. H. (which is the opposite order Dr. H had mentioned but I’m fairly certain OTCR should be first and so does the three other specialists I've consulted!, Although I've been on LDN for 5 months  now and I think I may have just really recently (within the last couple days) noticed a notch degree of pain lesson in my low back sacral dimple region, but it’s still utterly disabling and  with an uptake in the neck instability meaning I need to wear the collar more and more now, which in turn pulls and kills my back, what can ya do? I just want all the information possible to make a education right descion for me.  I've kept in touch via email with Dr. Chopra he is wonderful at staying connected with his patients. I feel this appointment was so important and worth it. Truly a life saving excursion all around, mom completely agreed. She felt so much more aware of everything after this! And it was worth it just for that too! 

After Amazing Consultation, Full photo with Dr. Chopra
(Bare shouldered in October)

View from our Window of the Biltmore

Medically Reciprocal State:  Going to RI was a very sudden thing, we managed to get a nice room at the Courtyard Marriott and settled in, they even had a hot tub and since I never get to have a soak mom wheeled me down and we took a nice soak, although it took me 15 min to get off the ground and back into the chair because the dysautonomia had been triggered with a vengeance. Back up in our room I medicated with my handy dandy Co2 Vape Pen and in a reciprocal state too which was so cool to still have all my medical protections all the way across the country if only it was like that everywhere. I even had an acquaintance I reached out to to see if we could connect, the timing wasn't right but knowing people is everything in this world and we had a nice little phone chat which helped prep me for Chopra (she is also a Chopra, EDS, LDN, Cannabis Patient) and I was told that President Obama was in town and staying at my Hotel! ..Turns out we were on the same block and that was why there were dozens of cops in front of the hotel and the whole street was closed for like an hour... our food delivery was late! =) It was kind of neat thought we had just come from DC and Obama had followed us up North =) He was giving a speech at the university and apparently he is only the second sitting president to ever visit Rhode Island while in office. Kind of neat. Anyways I prepared my bag and binder for what was to become my amazing 6 hour appointment with Dr. Chopra, boy did I not have a clue! But after those 6 hours in my chair my hips where on fire, my shoulder was spasiming like crazy and I needed to medicate, BAD! Thank goodness for my vape pens! Well we were waiting on a cab to arrive which was a whole nother fiasco trying to get someone to come out to Pawtucket after 6pm it was taking awhile and had gotten dark and was freezing outside but I needed to medicate asap so just as we go outside (bare shouldered)  I have my pens at the ready in my lap and the Taxi pulls up, I guess I forgot about my pens in my lap (I was bloody freezing, don't forget it's the end of October, sun's gone down and I cannot wear clothing on my shoulders nearly at all) and I was dealing with this crazy taxi driver who was really loco and didn't have room for my wheelchair (even though he knew I was in a chair) cause he didn't want to move the car seat from the trunk, that when I transferred to the car I guess my pens fell out on the ground and probably got smashed by the car. Anyways I became frantic back at the hotel when I couldn’t find my pens and since I didn't travel with green just the oil pens and now they were gone and I was dyeing! I needed relief ASAP. But I managed to reach out to Patient Advocacy Group and told them my tale and my connections in the area to the EDS Cannabis Patient I knew =) and they were incredible, went above and beyond and someone was so kind enough to bring to our hotel some medicine to make it through till we left. I was the luckiest girl in the world but we didn't have a piece, or papers or a lighter... so mom walked over to a CVS picked up some papers and a big ass lighter and we were ready. but the Jay didn't come out so good since we had no grinder so guess what? In the Lobby the hotel had a little  pantry and they had Apples! Mom ran down to grab one and a plastic knife and I made my first and only ever Apple Pipe! 

1st ever Apple Pipe and RI Meds

It was weird but did the trick, I’m sure we stank up the whole hotel room, our food delivery guy was cool and gave me a heads up you could smell from the hallway.... oh well, It’s the only thing that does the trick and I had fabreeze and the window open, I mean I was in really bad shape...stomach, spasms, nausea, subluxatons and if you've followed me on tumblr or instagram at all you'd know that I’m really only now recovering from the trip, I spent a good 2 1/2 months where I couldn't leave at all cause my hips where so misaligned and loose. But I digress. I’m just eternally grateful to the women who helped me out when I as in dire need. It’s nice to have Reciprocal States, Thank You Rhode Island! Thank you Patient Advocacy! 

Goofy Mother Daughter Duo

Transferring Flights, Legs Up,
Bags and Pillows at the Ready

Heading Home: In my chair and on the Providence RI Airport Runway, I’m wheeled up a massive ramp, loaded and hobbled onto the flight into the bulkhead seat, cause remember I’m 6'4" and I NEED the knee room, plus I can't walk any further then just past first class to the first economy class seats on our first flight of what was to become the longest day of my life! Three Stops, 13 hours, 4 pillows, 5 bags and priority boarding thanks to my chair, Thank Goodness!  The flight began with an announcement like no other I will ever hear again it went something like this. While the rest of the public were entering the aircraft our pilot came over the loud speaker and rushed everyone who had only just begun being boarding saying "If everyone can find there seats and store there bags quickly, we have less than five minutes to board everyone, in order to beat Air Force One off the ground!" We were literally racing the clock to beat the president into airspace! If we didn't we could be grounded for an hour and who knows how many connections that could mess up! But i got such a kick outta this, I just couldn't get away from out Commander and Chief he was everywhere! =)

Bulkhead Selfie
(TLSO & Aspen Vista)

Our First stop was a 2 1/2 hour layover in Atlanta. Which was a nifty airport we were transported through the terminals on a train/tram like vehicle, that was very crowded and the side to side jolts really knocked my neck and shoulders around! Then once I was at the terminal we didn't have long to wait until I was wheeled onto the tarmac and waited for a special shuttle bus that’s wheelchair capable to take us too our aircraft. Once on the flight all went smoothly. Here’s when it goes downhill, last stop, Portland, 300 miles from home another couple hour layover, I was a mess by this time, Mom was starving, it was late like 8pmish so we sat down at a Restaurant near our terminal, I got a chicken salad with oil and vinegar minus crouton and cheese and mom got a burger, But see I made a big mistake my body was being very uncooperative already with most foods since the trip had began ( I was cheating and had ketchup and chicken on the trip), I have reactions to nightshades sometimes more than others, but that night i learned raw is a no no and the roughage of the lettuce plus  the chicken it just  didn't go over well and I was keeled over, sweating, spaisming and subluxing, dying from the stabbing gut pain and nausea, not a way to start a flight, , I was trying not to sob or swear or speak in toungues cause communicating when you’re like that doesn’t usualy go over so well. at least not for me. Finally it was time to board and I find out I could not be in the bulkhead seat because this is a small aircraft and the bulkhead is also the emergency exit for Alaskan Airlines (small aircrafts), and I am not able to do the whole helping people off the plane in an emergancy, i used to no problem but not now! UGH so instead no one sat in the bulkhead and I had to shove myself into the tiny seat behind it and low and behold the tray on the seat in front of me jabs me right in the knee cap during some turbulence right after take off and knocked my fucking knee cap outta place, it was horrible and this time I did cry a bit, a bit more then a bit, mind you emotions where really high at this point too, everything had come to a head and mom was frustrated and it was late and we just wanted to be home. So the rest of the 40 min on that flight was utter hell, I've learned my lesson I will NEVER take a pit stop in Portland again. Not Ever! The knee cap was only the beginning to what was to  became the battle of the leg for the next four months. And it’s still bad just, not as bad. My hip, knee and ankle did a land slide imitation on me that has yet to completely resolve. Part of why I’m so nervous for my follow up in April. I just don't know how much the travel is going to destroy me again. Although this trip will only be a couple days not two weeks.

Insurance: 

AllCare Medicaid through Oregon has been amazing through the course of these events I have my own coordinated Care Case Manager and she was fantastic through this whole thing making sure approvals were going through and everything was set. We are still waiting on reimbursements from certain things. They didn't end up approving the Chopra visit (cause they said it wasn't necessary and there was no time to get it approved anyhow from the Henderson Referral to a Pain Specialist for the Root Block, which I felt if Chopra said I should I would but he agreed it wasn't the best course of treatment for me, gosh that man is such a good listener and so knowledgeable and  a wonderful communicator.  Totally worth every penny it cost from my collage fund money I cashed out to afford this whole Maryland initial trip. Anyways we're still not sure what's going on with the payment of Murdoch but as far as I know Medicaid is planning to cover my follow up to Dr. H in April so we'll have to see what happens from there. Although if I don't have the right mobility transport this time, I will have to postpone the trip once more. My local doctors and I have been on it these last several months! Those notes made such an impact.  I have orders in, waiting on approval for a 40" high raised shower seat with arms, Breg Shoulder Abduction Pillow, Knee Braces KFO like, Ankle Supports UCBL, and an Electric Wheelchair... it’s really needed! My legs are so bad, hips too, but pain running down behind legs just giving way after a few steps, I can't make it around very well at all most days. But here’s to hoping thing got better come spring like they have in the past although I’ve never been this affected before in my life. So I know there are more adjustments that will need to be made. I am also heavily pushing to see this sports medicine guy who does prolotherapy I've gotta try it for my arm as soon as possible!

The Plan: 

Dudes so how things went with Dr. Henderson and after talking with the second opinion phone appointment Dr. Donlin Long (who doesn't operate anymore just gives opinions) I feel pretty strongly about pursuing occult tethered cord release, I understand it's very new and there is no follow up date on the operations out there. And I'd like to maybe get a second opinion from someone who actually does surgeries.  I am sent off my paperwork to the doctor in New York that I was told about and I heard back from him last week, he is out of network, but the cost for the initial consult is only $250 and he was willing to meet me and take an in-depth look at my case. Occult Tethered Cord is pretty controversial and it’s still the new kid on the block, when it comes to taking care of something you can't make out before you go in. Now I don't think I could afford to have him do the operation although he seems like the one to do it, because he flat out won’t accept Medicaid or Medicare, but I like how he does the surgery compared to what I've heard second hand about how Henderson does it, something about putting in metal.. which Im not cool with. But  we'll see what happens there after my follow up with him.  I also scheduled an initial meeting (In New Jersey) For a couple days after my Henderson Follow up April 27th, and depending on how that appointment goes and what I learn from him on how he does the operation I will be able to make a more informed decision on who will do the procedure. I am even considering reaching out to Dr.  Bolognese to address my OTC if the new jersey guy and i can't figure out a payment stragey. Also I of course desperately need to know what is happening in rotation with my neck since we were unable to get a read from the original disk I had with for Dr. H, since apparently the atlas view was not even burned onto the disc! So I plan to get some answers about that image from Dr. H (newly burnded disc with hopefully the right images intact) and then learn the nitty gritty details of the surgeries so I can make the most informed decision possible and discuss with him my feelings on dealing with OTC first and hopefully scheduling that for the end of August after what should be my best friend's wedding.  I do not believe that if I decided to go to New York/New Jersey and have a second opinion with the doctors up there after my second appointment with Henderson that insurance would cover the flights I have to get in touch with Mercy Flights soon to find out if they can help with that. cause I really have no idea and I don't know how I would cover it either but it's just what's it going to have to be. Figuring it all out as we go and know if I will have the electric wheelchair or not and I need to know soon, because I only have about 2ish  weeks left to cancel without a penalty!

What I've been doing, trying and how it's been going:

Well I've been on the LDN like I said which has been helping with the neurologic pain in my skull, THANK GOODNESS GRACIOUS!! I thought that was gonna be the death of me I've been taking the H1 and H2 antagonists (Liquid Childrens Aller-Tec (Zyrtec) and Crushed RX Ranitidine (Zantac) which seems to be helping with some of the MCAD symptoms by not completely, and it must be taken together or no results.. it took a couple months I think to really notice.  I have stopped gabapentin, started lyrica, stopped lyrica, tried a few muscle relaxants Zanaflex (put me to sleep for 2 hours with more spasms on waking) and Baclofen which I’m not sure does anything, but if it does it's just ever so slight, I really think the cannabis helps to boost it a bit though cause alone it did nothing but with vape and oil it seemed to calm the arm down just a smidge. I've been on several new supplements and vitamins which I will be addressing in another post more thoroughly soon but I have included Ibergast and a Liquid Ginger Extract, liquid vitamin D3, Sub-lingual vitamin B12, Cod Liver Oil and tried multiple vitamin C's and magnesium’s but finding ones that I wouldn't react has been difficult, but I’m tolerating the Solgar brand much better now than I was others, But I still have a really hard time getting the magnesium down. My GP like symptoms were awful when I got home and it's only begun becoming more manageable the last couple weeks, I'm mostly on liquid/soft foods diet partially for my dysphagia. I’m staying away from high FODMAPs which is a big trigger, I try to stay low Histamine and Mostly off all grains... I cheated and had corn puff cereal and had some aspiration issues and had that checked out with a Nose scope and a Endoscopy and all that was found was I have an odd turn to the left with my esophagus. Recently  I've tried some rice, amaranth and some other mixed grain gluten free pasta instead of corn stuff but it gave me some intensely painful bloating so I was right to stay away from grains  these last couple years. I’m seeing a Dietitian now whose helped me get back to eating a little more, instead of living off ginger hard candies all the time which I was when I first went to see her, the gastroparesis was worsened after my trip cause of the nightshades, chicken and then of course the new med I started on Chopra's recommendations, the liquid children’s aller-tec (Zyrtec) I originally found at Walmart that  was  dye free  I didn't realize also had sucralose in it and I was poising myself 2x a day with the medicine that was supposed to help treat my tummy, but really was making it a million times worse. Thanks to COSTCO I get two bottles for the price of one and no SUCRALOSE! Yay! And now I can tell the the h1/h2 combo dose work even just a little.  Lastly I am in the process of getting my abduction pillow and the braces which should be arriving in the next week or so.  Some very exciting things are coming together I've been prescribed an electric wheelchair which will see if insurance may cover that would make this follow-up back east more likely to happen because I don't know if I could make it out there in April in my current condition and the manual chair  is not the right size for me at all (it was  inherited) it its better than nothing but it’s a killer too.  Just leaving the house has been a killer. There is still much to do and a lot more to consider in the next couple weeks. But this is whats been going on and whats happened. I actually have started to use my stationary bike more and more the last week. Hope to keep that up!

I hope that by posting these descriptive blow by blows I can help others find ways to help themselves and not have to fly all over the place to find help,  but if they do they can kinda know what there in for. Also I feel having this typed up for myself is a healthy way to teach myself and work out whats going on in my life. Live an online journal situation.

Peace and Love and All kinds of good energies to my whole Spoonie Family. 

May you all find some relief in your life.

Tall EDS Chick

Past Writings from East Coast Medical Excursion Part 1

Dr. Henderson & The Upright MRI Fiasco

Before anything even began
Let’s go back shall we... I am going to walk you through the last couple of days. It is Wednesday morning, I have two appointments (or so I think) and I have set alarms to go off like crazy to make sure I am up, medicated, fed and prepared for a packed day, ready to leave in PLENTY of time to get to my Upright MRI at 12pm....but I have this irking feeling inside that Washington MRI (greenbelt) may not have received my referral and I realized that my insurance approval was NOT going to be enough!!!! I called them and sure enough they DID NOT have my Upright MRI Flex/Extension Referral, so I doubled check their fax number and then my appointment time... and for THREE months I've had the wrong time listed. I even asked if it was gonna be a enough time... 45 min sounded too short for so many images Flexion, Extention, Neutral and leaving time for inevitable error knowing my body. more on that later..Anyways the appointment was scheduled for 2PM not 12...at least I had some time it was 10:45AM EST. I hung up and called my primary immediately, no answer. I left a message, then I called Dr. H's office and verified everything...I was good there. Or again so I thought... so it’s now 11:20AM EST and no one from my Primary's office has returned my call... I call back and the person who answers Andrea the referral gal!!! yay! Except she said she faxed the referral twice! Anyways third times the charm (with me monitoring the situation) each end called me back to verify it was sent and received YES! MRI set! but I’m all braced up with HOURS to go! so I propped up my legs on the lovely luxury one seater sofa and ottoman piled with blankets to make a higher back and brought my bad o' pillow over and sat me down with Noah and had a nice kitty love sesh to calm me down.. he loved climbing my TLSO and the ring splints I gather are why they love me so much too the texture. Right as I’m getting myself up, My phone rings it's Dr. H's Office my appointment is being rescheduled for the third time back to its original day and time of 11AM, alright sure. Whatever the wiz wants the wiz shall get... I'm at the wizard disposal while I’m here really. So Donna our incredible Air BnB Home Hostess packs mom and I into her Van wheelchair, zebra briefcase, bag o' pillows galore and all and we head to Greenbelt for my cervical MRI which is about 15 min away.. The trip wasn't too bad except for my knees where pushing on the dashboard and I got the bruises to show for it, we get there early and this gal walks out she's in her 20's, hair in a braid wearing zebra Tom's she sits down and takes one look at my Aspen Vista Collar/zebra bag/Entourage and more and Asked if I had such and such and If I was seeing Dr. Henderson.. Of course I was... we got to talking she's a bit older than I and has a story to tell of her own, one not like many others but all to familiar too some, a tale of operations and procedures, Diagnoses’ too little too late it would seem and possibly failing fusions. Not that uncommon in this community at all unfortunately! She left me her name right as they were calling me in, for what I guess I thought was to be the image to end all images, the one that going to help to give me the answers too what is happening in my head/Neck.

The Upright MRI (Greenbelt, MD-Washington OPEN MRI)
It was a strange looking machine; I wish I could have taken a photograph. I walked up to it and there was cement and then a metal step that I think you’re not supposed to step on and underneath looked like just air like its floating I thought, I hesitantly turned around and sat on this tiny seat in-between two small white walls and immediately asked to prop up my left arm with something, She added a bar to my chest for my arm to rest on (wish I could have something like that traveling with me everywhere!) and gave me a foam tube thing to help keep my shoulder up. Then she added a bar to my forehead so I didn't move during the picture (while holding up my head)....well it wasn't tight enough, after two takes we adjusted the bar tighter and got a supposed clear shot, but still not really and I was rather pissed about it actually! Anyways there we went on to try Flexion and the bar was stopping me from going all the way and I guess I didn’t understand but I tried to touch my chin to my chest anyhow and was causing terrible pain and shaking another 2 takes.. Even though I tried to stay still on that bar but nothing was clear. I had this problem supine too actually it’s just hard to get a clear picture when your neck isn’t stable! Duh! I mean come on people! But it also hurts like a bitch and is fucking hard to do! so they said we were out of time and that I could wait and see if they could fit me in after the next patient if the other one is later or a no show, I noticed of course everything got worse while I was in there the meds wore off (way before six hours let alone four) but took the afternoon doses and then went outside for fresh air cause honestly I was a mess I medicated on the c02 vape pen to push down the nasty nausea that was rearing its ugly head the whole trip (my whole young adult life) and calm the fuck down and then I went and sat back down inside legs up and waited the next 2 hours.. they said they would squeeze me after the next patient but they didn’t know.. no no! and then when they where closing they said that the next morning they would schedule me for a 15 min slot at 7:30AM - (they open at 7) to get those flexion and extension MRI's for Dr. H so I said Alright done.

The Big Day 
Alarms where set on the iPod for 4AM, 5AM, 6AM on my phone for 4:30AM, 5:30AM, 6:30AM, 7AM
I was up I got ready I got mom up an hour before the hour before go time and then I got donna up at 6:30 and we were out the door and there just after they opened earlier then  I was scheduled just in case 15 in wasn't long enough and it was possible to get in early to get them images taken,, everyone I’m with was a fan of being early so it was cool except low and behold no one was there 7:20AM no one! I call and the Rockville location answers and after my schlep they said they will try to get a hold of someone and call me back... it's nearly 8am  when still I’ve gotten no calls, no one's showed up but the first appointment  is now waiting too and then this gal pulls in opens the door. When I get in she looks at me pretty blank and says she has no technician and of course for me with this was uber time sensitive with my appointment with Dr. H in just a few hours so she calls Rockville and they said they would try to squeeze me into 15 min. it's a 45 min drive there though!!!! and of course we hit traffic and of course I was sitting in the back seat, trying to prevent the knee pressure, but instead with the stop and go traffic got unbelievably nauseous to the point that I grabbed my hospital vomit bag, I've carried in our car since I was at the ER in February, out of my zebra bag and proceeded to hurl my Turkish figs I had eaten. ugh My eyes where crossing and vision was blurring, I was passing out and trying to keep a hold of my vomit bag without spilling it in Donnas car, but whilst passing out this is quite difficult, I had to keep jolting myself awake and I was hot and flushed and probably had to pee too but then again I always think I have to pee so what’s new with that doc? anyways stop and go and stop and go every ten feet for 20 min. until  I asked her to slow down the speed of traffic pretty much and I felt a bit better but I already had hurled too all I had in my tum tum tummy. I still couldn’t watch the road like I wanted, probably part of my PTSD from my 2006 accident, eyes always must be on the road, I need to prepare myself for what comes next a stop, a speed bump, a pot hole or a large crack or turn, it’s all painful everywhere! this loose joint crap has destroyed traveling in cars for me, surprisingly enough the airplane was not horrible at all but my legs where not happy, I did try to keep them up as best I could I can only leave the house once a day or my body becomes Defcon 1 on itself and I feel like I’m gonna implode. Okay sorry where was I...oh yes we arrived in Rockville Pulled In I grabbed my cane hobbled in throw away my barf bag and found my way to this lovely MRI place in a great Office building although the directions sucked on the paper they did not say shit about a u turn! But when i called they where a nice and directed us in. The office was better I thought and I was taken in pretty quickly Ryan did my Flex. & Extension MRI and when I said the Bar was a problem he mentioned Henderson didn't like the bar used so I just said then let’s not and he was like alright! And I was like ALRIGHT! We where outta there in like 20Min! If only it where that easy the first time!

Off to see the Wizard.... 
Chevy Chase is approximately another 15min from Rockville but like 25min with traffic and what not. My appointment was scheduled for 11AM I arrived at 10:40ish with mom and bags in toe. His nurse and the trainee (her first day as it seems Rebecca was leaving the next week) moved me and mom into a room rather quickly and began to take a history asking certain questions, the only one I can recall is what are your three highest concerns? 1) Chef’s Knife in skull 2) Back Pain + Symptoms = OTC? 3) Neck cracking (stability).  I was all set up organized with my lists of symptoms, forms, records, and spine imaging up the wahoo, I’m not sure it was looked at.  I can understand that walking in on with really no back story for the most part other than the briefest of would miss a few things or only address a few things or even just be overwhelmed and not understand everything. He seemed to Rush himself jumping right in not really asking me questions or giving me a chance to ask questions or feel open to speaking at all, not sure what was soaking in or just bouncing off that brilliant mind packed with 100's of cases and information and looking at and FOR certain things. So good news was I got some straightforward answers from him and we ruled out some things and ruled in other things.

His impression

He said he was at this time comfortable scheduling me for surgery for C3-4 Fusion (I hadn't even known that disc was the bad one, I was told it was C5-6, which he really never said anything about) and while I don't have Chiari (yay!) I do have Clinical Occult Tethered Cord Findings that he recommends a OTC Release Second Opinion (before he would operate is what I gathered)  Also although he found I have a Neurogenic Bladder from my Urodynamics done back home it was incomplete and he wrote a referral to have it done by Murdock Associates who have a better understanding of how an EDS bladder works and the significance of Urdynamic findings with Occult Tethered Cord- I had preemptively scheduled an appointment for the following Monday going on the assumption this would happen and then  assuming they would take the approval from my Oregon Medicaid insurance, which they very well may not have in which case I will likely forgo that testing as I don’t think spending $1,000 out of pocket for this test was wise.

Dr. H wants these results and the seconds’ opinion as well as Micronutrient Panel Blood Test (Spectra Cell) and a couple other tests (Genelex) to review at my follow up scheduled for February 9^th Which is Rescheduled to April 27th now cause I could not bare going out east in winter with bare shoulders and or of course if I can get insurance to cover this otherwise I’m not sure pursuing this course of treatment will be feasible at all. 

Lastly (you may know from my previous post that I made during my trip in Oct) but Dr. H gave me the name for the Knife in my skull which he called Occipital Neuralgia and wanted me to go home and have a Root Block in my Occipital Nerves…. shocked no one had done or suggested this yet… but I gather it’s cause 1) they knew I was gonna be going to Dr. H so they just differed everything to him first 2) they aren’t willing to touch an EDSer and since they didn’t know what the stabbing was maybe they just didn’t think to try the block since no one ever brought it up. As for the rest of Dr. Henderson’s Recommendations and Findings he recommended c3-4 Fusion, OTC Release, then reevaluate if other issues persist, to remove my herniated discs at T9-10 and Fuse C1-2 as well as whatever the results are to the Root Block and possible surgical maneuvers there too…

Henderson Grips

Here's the problem. I told him looking to the left is extremely painful and triggering for me and yet he stayed on my left the entire appointment and also one of the images the rotational CT which would seem pretty darn important with my rotation issues I'm having he didn't even review the disc at my appointment. He showed up 2 hours late and it felt like he only maybe spent half and hour with us and most of the time talking to the phone.. on my left. and worst of all I wasn't even told that the disc he had didn't have the right image on it till I was already leaving the state! 

 Honestly guys I’m not interested in fusion surgery and If you have been following along these past several months on tumblr or instagram you will know I desperately needed to know what this Knife was and I did and have since actually dealt with that to decrease it the most ever with the use of LDN (more on that in the next post0 however my OTC is more prevalent in my life now and needing to be taken care of more urgently then I had anticipated or Dr. H had anticipated and that is what the main focus of my Follow up will be when I go back end of April OTC and further review f my rotational issues cause an addendum in my CT was added that Dr. H didn't see which involved a seemingly high rotation at C7

Here's what happened next:

First thing first, I got online after my appointment with Henderson. Facebook has amazing support groups for EDS and related conditions and I posted out to the Beyond the Measurement Group that I needed a Second opinion on OTCR and who did they go to? I got a response from a mother of a young male with severe OTC, POTS & EDS, she reached out to me and gave me a name of a surgeon in NY that operated on her son and it has gone incredibly well. (and he was the first OTC/EDSer he had operated on!) Anyways I spoke with this women and she also reffed me to Dr. Pradeep Chopra of Pawtucket, RI and helped nudge me to email him about my situation and see if he could squeeze me in. And so with nothing to lose that is precisely what i did. I emailed Dr. Chopra and told him about my OI and neck and back problems that I would extremely value his opinion on if i should and would he do a root block on me... cause my fear is that from my limited research on root blocks they are just a combo of a steroids (which doesn't work) and a anesthetic and the immediate relief from the injection would be from the anesthetic and if it helped then they maybe cauterize the Occipitol nerves or something and this all sounded like it was gonna be a non starter for me cause i believe steroids only weaken and loosen me further and i don't want that in my skull thank you very much but i wanted to consult with someone very familiar with EDS and Pain management and guess what this. incredible doctor, Dr. Chopra emailed me back himself on a Saturday night and said call Monday morning and that his office would fit me in that next week! I was floored shocked and so grateful. Next I had to figure out 1) how was i getting to RI from Maryland and how would I re book my tickets. 2)Would insurance approve it 3)where were we gonna stay 4)Was the Urodynamics gonna be covered and much more. 

Extras: Now if you can't tell already I never went anywhere or did anything but the above things in Maryland. Our host was amazing and took me to nearly all my appointments and anywhere we wanted or needed to go. She wanted to take me to the famous buildings and show be DC but my stomach was acting up something fierce and mom and I binge watched Gilmore Girls on the Laptop the whole time while I kept my tummy under heat. The weather was really beautiful but the pain was spiking high. I did have a lovely visit with a wonderful fellow tumblr spoonie friend which was such a treat and I am thrilled that happened. I've waited a long time to post this extremely detailed encounter of my trip (most written on the trip) it is very personal and I wanted it to be just right, however I've been sicker and less able to concentrate since the trip and i feel in order to understand my decisions currently and in the future some of this back story is necessary and I promised to post this so long ago, it may have taken time but i keep my promises. Sorry I if some parts are less coherent or have many errors. It felt like it needed to go out cause i was never gonna make it perfect. 

....Part II coming soon..Dr. Murdoch, Dr. Chopra, Insurance, The Call,  The Plan.