Re: how our diseases can affect finances

June 7, 2010

Dear e, I was cleaning up some old files, that I keep b/cause the info

is so valuable, when I came across your post, dated 09/01/09 which had been

saved for future reading as I had been in the midst of yet another move and

saved it due to not being able to be on-line while in transit. I'd like to tell

you a tale about us. Mike & I were a normal couple, living and working in

California, I was a traveling nurse, so we would choose a place we wanted to

live or try out and land jobs there. We were happy with our semi nomadic way of

living. Kids were grown and parents were fine on their own. So, we traveled a

bit, settled in for a bit and then would move on again. Always employed and

always covered medically. Summer of 1991, Mike was 44 years old and in good

health, or so we thought. We had traveled to San Diego to combine our vacation

time with a visit to see my mom. While there, Mike suddenly becomes very ill

and hospitalized.

Trying to keep this story short, he wound up hospitalized. Post surgical

complication were two CVA's, a gangrenous foot which had to be amputated and a

torn pancreas. Torn in the surgical process of a splenectomy, All in all

hospital time was 10 months followed by 6 years of intense rehab. Needless to

say, he lost his job along with his medical insurance while he was still in the

hospital. His prognosis was very poor. HE HAD DEVELOPED PANCREATIC PSEUDOCYSTS

which drained for months. I had been in the process of trying to recover from

CMV & EBV which let to CFID, so I was not working at the time. We had traveled

to San Diego in our old 16 ft Winnebago and ended up having to live in that.

After the surgery and with no income, we went to live in our Winnie at a state

campground to work as camp hosts. By that time we ended up on welfare as Social

Security Disability had not kicked in yet. It takes a year after being approved

and we had

to fight for approval after being denied several times. So, we lived in

campgrounds when we could and on the streets in the Winnie when we couldn't. As

a nurse, I took over the monitoring of Mike's extensive rehab. Eventually, he

learned to walk and talk again, but with many limitations. Finally, Social

Security kicked in and they deducted every welfare money we had been given. A

total of $500.00/ month was what we had to live on at that time. It was either

pay rent or eat. We chose to eat and camp. Several years past and we were

surviving homelessness, but not thriving. We needed a roof over our heads. I

also remained ill with chronic fatigue. I had liver, heart and neurological

involvement. We decided to try and make our way East as we weren't getting

anywhere in our stagnant position and outdoor living was extremely difficult.

We purchased items at low cost along our route at flea markets, yard sales, etc.

and selling them at the

next flea market. The trip took 4 months as we had to stop each month when we

would not have enough money for the gas. Eventually, we arrived on the East

Coast. The Winnie barely held up and we inched our way to NYC where we filled

out an app. for a HUD apt. There was a waiting period, so we lived behind a

truck stop in New Jersey and ate one lunch buffet a day. That was the most

reasonable way we could live. The Winnebago no longer was running. It was

October, and winter was fast approaching when we finally got the call, that an

apt. was available and for the first time in 4 years of being homeless, we went

to live indoors. Thank God for the old Winnie. We sold the Winnie and the rest

of our inventory to purchase some furniture & household needs, put down the

deposit on the apt. and began living normally again. Meanwhile, my condition

continued to deteriorate so that I was not able to go back to nursing. After

years of total organ

involvement, seeing many specialists and having no firm diagnosis, I was

diagnosed with Systemic Diffuse Scleroderma in 2005 and given approximately 5

months to live. I was offered the usual toxic meds which I decided to refuse

and seek alternate ways of beating the Scleroderma. I had nothing more to

lose. I would be dead very soon anyway. We had lived in NYC for a total of 9

years and had made some very good friends. So, when they bought a new computer,

they gave us their old one to learn on and I immediately sought info on

Scleroderma. I found the Roadback Foundation site and from there I learned

about Antibiotic Therapy. Raynaud's on both Mike and I had set in and winters

were now horrible and my lungs were failing me. Meanwhile my mom had moved

from Ca. to Fl. I would go down there for the winter. Mom was getting older

and senility was setting in. And each winter felt colder and colder and my docs

up north told me to seek a

warmer climate. The miracle is that I was still alive on antibiotic therapy.

In 2008, my mom was declared incapable of living alone and I was told she

either had to go into a nursing home or live with family. We finally said

goodbye to the little apt. we had lived in for 11 years and headed south. We

rented a larger apt. in Fl. for one year and moved Mom in with us. That was a

bad year for all of us. We were so confined. We missed our life in NY, but

knew we still had to move on further south. Florida gets its' cold spells and

so we made plans to go south again. In 2009, I went into complete remission

after 4 years of battling scleroderma. Meanwhile, Mike had developed Lupus

anticardiolipin and other autoimmune problems and his raynaud's continued to get

worse. I was still cold intolerant and my mom was very forgetful, combatant at

times and getting older. We started to look for a place in Puerto Rico. Now it

is 2010, and we just

moved into a cute house, near the ocean with cooling breezes. We are

climatizing and all three of us are doing well. It has been a long and

difficult road. We are much older and more damaged, but surviving. Being on

social security has been both a blessing and a curse. We have had to put up

with healthcare insurance denials for therapy and medication. But, we are

grateful, that at least we do have medical coverage If we find the right low

cost clinics, we can survive. We now have a permanent roof over our three

heads, 3 square meals a day, low cost meds availability and most of all, we have

each other. My daughter, who recently became an R.N. and plans to do travel

nursing, was here this past weekend. She gave us $300.00 to fix that darn

broken down car sitting in the yard. When that is done, we would like two more

things. A doughboy pool in the yard so that we can continue to do aerobic

exercises and a portable hot tub for

Mike, so he can continue his hydrotherpy pool exercises which keep him supple.

Mike is also on antibiotic therapy so we don't sit in the sun at the beach

because of hyperpigmentation and we must also monitor mom 24/7, She loves the

outdoor patio, the fresh clean air and spanish speaking neighbors. Mom was

born in Puerto Rico. She is 95 and the last living person in her family of all

her siblings. We have all come full circle and we are happy and thriving. My

ANA was 640 and my RF was in the high 80's. They are both 0 now. Mike's blood

work is stable and he is developing hobbies among them gardening. We have just

put in our organic herb garden and will start our organic vegetable garden

soon. We have lemon, avocado, mango and banana trees. Life is getting good at

last and we have friends that are now making plans to visit. Meanwhile, Mike is

learning spanish, I'm improving mine and we are making new friends and

connecting

with relatives in Puerto Rico, we didn't know we had, thru facebook. Dolores

& Mike, still married to each other for the past 35 years. Miracles abound.

Thank you for the opportunity to share my story. Dolores

From: e <flight1@...>

Subject: rheumatic how our diseases can affect finances

rheumatic

Date: Tuesday, September 1, 2009, 7:17 PM

Hello to the group,

I received a call from a friend of mine in California who asked for my help.

After an hour conversation with her....I wondered how many people will go

through the same outcome because the cost of rheumatic diseases( here is the

scientific researcher in me ..LOL). My friends who are a couple I met on a

cruise ship. We were interested in art and we chat after an art auction after I

bought a few peices. They saw Dr. on my credit card and my friends husband asked

,with a big sigh, got any miracles for arthritis? I had noticed his limp.

The outcome of them is they had to leave the cruise line since humidity is not a

great friend for arthritics. I helped them not loose their house to the bank,

but they did have to give it away for the money they owed on it. So, they ended

up selling jewelery, furniture, etc. just to have a car, a few personal

possessions and go to California to seek employment. They have been living the

past nine months in a low end motel, don't eat sometimes. Tonight, I was told

they will now be living in their car and eat very little just to pay their

insurance premiums. I was so upset that how handicaps, the cost of the diseases

and the economy that good people like them have to go through it. I offered to

let them come live with me so they may have food and a roof over their heads,

but they declined with the distance and how it can be very costly medically for

them in Canada.

I wonder statistically how many people will go through this because of illness.

It probably is quite high, any number for me would be too high.

If anyone in California know about places that have food kitchens or whatever

that I can suggest to them would be great. I find it hard to sleep in a

comfortable bed when my friends , who are much older ,will not be having a bed.

If anyone is experiencing the same thing or have experienced it....it would be

nice to know how to survive in that position.

I sincerely hope everyone is well and that life will continue to give a better

quality of life.

e

June 7, 2010

Thank you for sharing. Everyone has a story to tell. I can appreciate your " road

back " testimony.

Donna

rheumatic how our diseases can affect finances