in retrospect, i so wish we had acted on my parent’s idea to take me up to Mayo Clinic, but i was so seriously sick at the time and i was/we were all suspended in what i now call ‘reactive medicine mode’

if i/we had stopped the chemo and gotten a second opinion, i believe (and several of my later drs agree) i would have not lost the hearing in my other ear (i’d give my left arm for one working ear)

did you know i’m profoundly deaf – a late-deafened individual?

in 1995, 24 yrs after the first symptom of the disease manifested in a total collapse of my nasal cartilage (i lost my nose at age 19!), i finally received a correct diagnosis.  the doctors started  me on a regiment of high-dosage prednisone for the inflammation and in an effort to suppress my immune system i began chemotherapy. 2 years later, in feb of 97 i lost all hearing in my right ear but i/we signed the Permission To Proceed With Chemo paperwork as i was seemingly on my deathbed and we figured to just keep giving the prescribed treatment more time to work

consequently, i lost the hearing in my other ear in may of that year.  the chemo burnt the delicate, microscopic hairs that conduct sound waves to the nerves in the cochlea

after a grueling, long and complicated legal procedure we (my family helped for years to fill out all the paperwork) achieved Fully-Favored Disability Status for me and i graduated from the county hospital system to Medicaid in 2000.  it was obvious to my new rheumatologist (a Medicaid provider and teacher at U of TX Medical School) that the type of chemotherapy the drs at the county hospital had used was not the correct choice for my particular condition.  she put me on another kind of chemo and increased my prednisone dosage – my former drs had been afraid to choose that route because the side-effects of high-dosage prednisone are so serious.  in so choosing to not aggressively treat the inflammation, they caused me to suffer terribly and for many months

my new rheumatologist had my whole mess under control in a few days – i was able to get up and out of bed and feel like a human being, even if i was a very sick one.  now i felt i had a chance because i could breathe and think straight and move around!

so, you see, that’s why i am such a strong believer in second and third opinions – i’m a living example of one who did not do that and paid with THE LOSS OF MY HEARING!!!!

she also worked with me for many years to help me safely wean OFF those dangerous drugs that my condition required at the time

yes, mistakes are made in the medical arena

yes, i used alternative medicines to counteract the side-efects of the drugs and to help me wean off all the drugs, recover and re-enter life

i know that having the mercury removed from my teeth really helped my immune system – but i did that in-between relapses

when the disease was active, i was on lots and lots of drugs

by my estimation and with the little i know about your circumstance, it seems that thing are not even close to being under control and you stand the chance of losing a body part or, if you do have RPC and the disease is active in your lungs and/or heart, this could actually be a life threatening development

you don’t need to look sick to get on Medicaid – you have to be in a position of not being able to pay for the care you need and deserve

your family doesn’t need to understand the situation to support you.  that’s the whole point – you’re seeking to understand what’s underneath a collection of symptoms that make no sense to you and are giving you grief, discomfort and pain.  this is your job, now, to pursue the answers and solve the mystery

first of all, it’s up to you to decide you need help

you may not feel comfortable to ask your family for help but it’s an option you might want to meditate on

they very well could come through for you

my whole family had to get involved – it’s a HUGE, multi-level, tortuous affair, battling it out with a rare disorder and i was fortunate to have help from my family, church community and friends

you are the one calling the shots

you could simply lay it out in a formula:

if i do this __________ this could happen

if i do that ___________ that could happen

and then you make the choice as if you were taking care of someone you dearly loved and had a say in their care

i hear you that it’s overwhelming, all of this.  give yourself credit for ‘keeping up’ in the face of this challenge

it’s your journey and there are no good or bad choices

at this point, it seems you’re dealing with so many unknowns and i suggest you step up and find out every single thing you can, sooner than later when you might have an irreversible loss. knowledge is power!

if there’s any way you could get yourself to Mayo or at least to a specialist in a big city near you?

you need the facts, pictures and the figures- the results of lots and lots of tests

it’s 2013 and medical technology is amazing

you have shared your wisdom with me and i believe you will move through this maze without losing yourself

yes, diet helps – alkalizing your body is SMART SMART SMART

fruit and veggie juicing is great and yes, i know that many people turn their dis-ease around by committing to the discipline of cleansing programs

but it also might not be the right time for any extreme measures.  for now, you might want to just listen to your body and give it what it’s asking for while you seek out a specialist and start moving through the tests required for them to make a diagnosis

it’s not for me to put any value or judgement on any of your choices

i’ve listened and freely shared information and my experience with you

let me know if i can be of any further assistance to you as you walk the path and weigh the pros and the cons

most importantly, trust your inner voice