[little*rhino]

hi guys...

for years i have struggled with multiple health issues... my whole life actually. It's been painful, debilitating and stressful. i discovered a family of disorders, connective tissue disorders, that fit everything that has happened and i've had to fight for years to get a final dx... well.. i did get it. The geneticist was certain and she was shocked this wasn't done before now.

i have ehlers danlos syndrome III. It means that the collagen in my body doesn't work right. It's the glue that holds everything together... it's all the soft tissues, blood vessels, muscles, ligaments.. everything.

everything is at risk of damage, not the least of which being my blood vessels and heart. Some of you know frmo chat that i ended up in the ER in AUgust for substantial blood loss due to an artery breaking.

i have body-wide pain

i wont go on and on... no point.. but i have decide to make a new committment to myself.

i decided that i am going to have to treat this body better than it has treated me. i've decided to use my tiny little food budget to buy better food and aim to get good nutrition as i can... now, some of you know that there are other issues with that, but as best as i am able to manage i intend to eat better. it will mean eating less because i can't eat in quantity and still get fruit and veggies... today i had baby greens with chicken instead of my usual 1/2 box of KD.

ive had to buy food and forego medications sometimes but i am intent now on finding the best middle ground

i need to start planning a strategy to take care of me and this body of mine.

open to suggestions

[billieJ]

Little Rhino ~ CONGRATULATIONS! You are not only an excellent diagnostician, but you found a doctor to understand and diagnose a Dx as complex as, well I have to keep looking back to even spell it, and I would bet money that most docs have not heard of it. I am saying that you have done a completely remarkable thing. Taking care of your health should be relatively easy. Easier said than done, I know. I'm no expert, but, if you can: buy raw and eat raw or cook yourself; use generics; tell your prescribing physician of your financial plight; is exercise allowed?; apply for food stamps; apply for disability; go to your local Senior Citizens Center and ask for a pamphlet on financial help for medications; or ask here on a new thread. As a self-diagnosed and finally doctor-diagnosed, one-time sufferer from systemic candida albicans, I truly congratulate you on what you have accomplished with the diagnosis!!!!!!!!!!! billieJ

[little*rhino]

i'm actually working... i've struggled hard to make life happen.. it's killing me but i don't have any real choices. Disability would pay about $600 or so a month. Rent in the city is $800 on average. Moving outside the city would remove me from being able to get around easily and from doctors and other things i need.

i have ambitions to make not just a possible life but an awesome one. Today i am doubtful of it as the pain levels have been grinding me down.. but.. i am not down for the count yet

if i gave up working then everything that i like about my world would change in bad ways... my pets... no way i could find a place for less where i could have them. Pet-friendly is hard to find in this town.

you're right.. most doctors dont know anything about it... it's a rare genetic disorder but there isn't any doubt that i have it. It was simply a matter of only one set of things fittng all the weird and varied health issues that came up.. a LOT of research and being unwilling to give up.

one doc xrayed everything... no matter what. He'd always order these straight-on xrays of my spine.. well, once i had a better doc they ordered ct scans and wowzers... from the side you can see the spondyliolysis and spondyliothesis L4/L5 - go figure.

i just get tired of having to know it all... i have to educate almost every new doctor i meet, with exception of a couple of specialists. i have to research journals and learn up on everythign.. it's tiring. MY GP though, bless him, he is honest at least... he looked at me and flatly admitted "I've been practicing 25 yrs and I've only ever met one of you before." I appreciate the honesty because he will then direct me to the correct specialists.

i had one doc tell me that the myoclonus i was getting was my mind doing funny things.... Imagine. Turns out that EDS commonly has magnesium deficiency and guess what that does? CAUSES MUSCLE TWITCHES... i wonder, did he play hooky from medical school that day? Missed that lecture on the role of Mg in the 300 biochemical reactions? It burns my biscuits really.

i need ways to eat healthy but eat cheap, cheap and cheap. i am working but i am the working poor. i spend what money i have on frivolous things like rent and medical stuff... and my babies, of course.

i have to restrict carbohydrate intake so a lot of cheaper food sources are out - like breads and pasta... well, not *out* because i cant afford proper foods so i have to eat some of those.

but i bought good quality vitamins... have had salad with chicken 3 days... had fruit.. drinking milk... trying to rest as i can.

exercise is allowed.. but even my docs say it is a very difficult balance for someone like me... every joint is at risk and my muscles hurt so bad almost all the time. If i strengthen then it will assist with stability and help prevent damage... but the act of strengthening may cause the damage in the first place.

i used to do yoga but i'd need a seriously experienced instructor to teach me safe moves... which equates to $$

i'd swim but i can't afford a membership and the pool is so far from me that i cannot get there reasonably.

a bike is out of the question

i walk as much as i can tolerate

[arcanum]

(((((little*rhino)))))

I too have EDS and my doc hadnt heard of it either when i was diagnosed a few years ago, she has been great tho. When i moved to my flat across the other side of town i should have gotten a new doc, but i didnt want to have to explain everything all over again so she agreed to keep me on.

You are doing really well to still be working, i had to give up my job and move from my house and my beautifully nurtured mature garden that i worked on for 15 years! Now i have to live on disability as i cant walk far at all most days and am prone to falling over and falling asleep!

If you ever need to rant to someone you are welcome to PM. Well done for staying strong!!

[pernille]

Hallo rhinoserose and arcanum,
terrible as it is to suffer from a painful, incurable illness like yours - or mine (Parkinson's) I notice how different the reaction to pain and illness between the diagnosed like us with an illness that is physical as well as mental. It is as if the physical disability creates courage and fortitude. Mental ullness is not so tangible. In spite of disability and pain we seem to cope better. Bravo to both of you, you are both very brave.
And now for some good food:
Soup can be made inexpensively, the trick to make a yummy soup is not in the meats but in the herbs and spices and veggies.
Pepper, salt, sugar, thyme, bay leaf, basil, rosemary, garlic, onions, leeks, carrots, parsnips, dried beans of all kinds, tomatoes, all manner of greens, marrows, squashes, potatoes, olive oil, butter, cream.
Any combination will do, be generous with the cheap, stingy with oil, cream and butter.
Add a chicken when you can, or a marrow bone, and noodles and rice now and then, or a piece of white fish like cod.
And when some kind soul gives you a bottle of Sherry, put a glass of it in your tomato soup with a dollop of cream. Same goes for white wine.
Buy what is best and cheapest and compose masterpieces with what you have found. It's fun and healthy and delicious. And except for anything with potatoes you can freeze soup for later, tired days. I love to cook.

[shezbut]

Originally Posted by little*rhino

i'm actually working... i've struggled hard to make life happen.. it's killing me but i don't have any real choices. Disability would pay about $600 or so a month. Rent in the city is $800 on average. Moving outside the city would remove me from being able to get around easily and from doctors and other things i need.

((littlerhino))

I am on SSI which gives me $674/month. BUT I also live in federally approved and paid apartment housing downtown. One-third of my income goes to pay rent. I have medical assistance, to pay all medical bills & prescriptions. I also have looked into many programs to help pay for food, clothing, phone, etc. There are various programs out there that assist me through.

It isn't real easy. Money is always tight. But, working isn't an option for me. And that doesn't mean that I have to live in the boonies. Instead, most apartments are downtown, to deal with the fact that the majority of us cannot drive to our necessary appointments (nor can we afford the cost).

So, don't let the financial aspect stop you from asking for the help that you may need sometime. Very best wishes to you!

Shez

[January]

I have a few thoughts to add. I, too, am unable to work anymore due to my disabilities. They are physical and psychological. I worked and worked until my body and mind literally couldn't take anymore. I thought there was no way I could possibly survive on my disability payments and I had no idea how I could buy my medicine, food, etc.

Let me explain a little about public housing. The elderly and disabled have first priority when it comes to available housing. There are places that are just for the elderly and disabled. Some have private contracts with HUD and some are through HUD itself. The privately owned ones are easier to get into because there are not huge waiting lists.

If you need help getting the money for your down payment and the money to turn on your electricity, the Salvation Army, churches, and other charitable organizations will help you. They will give you some food and get you started.

If you have to pay for part of your meds, that amount is figured in so that you may not have to pay 1/3 of your income toward your rent. Mine is considerably less than 1/3 of my total income because I have to take a lot of meds and have to pay a deductible on them.

There is a Federal program to help you with winter heating. It's a wonderful gift! You can stay nice and warm. Food Stamps, called the EBT program, are also a wonderful gift. I admit I still get embarrassed when I use them, but I have to do it. If I can put a little money back to add to the EBT, I can manage decent food the whole month. It's harder for me because there are so few foods I can actually tolerate. These days you can get a lot of good foods at a dollar store.

Anyway, I hope this is a little help. It seemed impossible to me, but it is doable. Is it how I planned to live? No, but it works.

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