My Life/Group Response/Very Long

May 21, 2011

Hi Everyone,

I so hate doing this; however I am having a bad day. I am going to have to

respond to the group members that have written in one post. Reminds me of that

part in the movie; " ghost of girlfriends past " when McConaughey does a

conference video chat while breaking up with three women. That is how bad I

don't like to do this type of response, so I apologise. I want to tell you all

somethings I have experienced that I have been holding back on too, to allow you

people new to me the opportunity to know me and I think that then, you can

really know me. Most, if not all of the oldies know this " stuff " about me

already as it was here I reached out to first and received unconditional support

and love.

I start with moving to Pennsylvania after my spouse " Jim " retired from the

military. The story that emcompasses when and how I receiived a Stills Disease

Dx. is on the main site, I believe under member histories/stories etc...Anyway,

Jim got a job in Environmental Health on the base in Willow Grove, PA, just what

he wanted a civil service job; a little more than 20 miles North of

Philidelphia. So, we sold our home in the place we had thought we were going to

retire and moved as the family we were to Pennsylvania. We bought a beautiful 4

level split, fixer upper, older home with four bedrooms and two and one half

baths. We put our love into fixing this home up to make it ours and we did it

together as a family. I had accepted a job at the local teaching hospital in

Abington prior to our move and as soon as our belongings were unpacked and in

their place, I started work. In just a few months, I also started Nursing

school. I was a LPN already and I had been working in the ER and ICU areas, my

career as a LPN was already maxed out, I could go no further and I craved the

knowledge of the RN as I was already doing RN work, except for being charge

nurse. Sure I could be taught to do " things " ; yet, I did not have the knowledge

base to understand the why of what I was doing. I had already completed all my

prerequisites as with chilldren and a spouse whom was getting a masters degree I

chose to delay the rest of my education until Jim retired so a parent would

always be home and I would be there for my spouse as well. So, it was my turn

to finish college, Jim supported me through it, just as I had done for him for

most of our marriage. We both continued to work and continued to be there for

the children and each other. We together attended all sports games and drama

plays for our children even though times were tough. We made it through, I

graduated College the same year our son graduated high school. During the time

I was finishing Nursing school, I was on Enbrel. Some have commented on how it

has stopped working for them and for some it is still working. I was in my next

to last semester of Nursing school getting ready for the last semester when the

Enbrel quit working for me. This is when my Rheumy sent me to Harvard and the

NIH for a second opinion. Both came back as SLE and Dr.Kastner at the NIH

explained to me that the Enbrel had quit working because the inflammation has

gotten to much for it. He then let me know that there were other studies going

on with new meds, but they are still in the very early stage of research. He

sugggested my Doctor consider cellcept as I had been on Steroids of 40-80mg per

day since the mid to end of my second to last semester and the prednisone was

playing havoc on my body. Secondly, came the day when I was working in the ICU

and I could no longer take care of my assigned patients. So, In hindsite I did

a very stupid thing, I left a job I had been at for nearly eight years and went

to a Nursing Home as a supervisor of the Evening Shift. Not only was this a

goof as I did not realize I had just lost my long term disability. This was a

big mistake as the politics of this nursing home cared more for the money and

would frequently counsel me on sending patients to the hospital-even when they

were admitted to the ICU and usually were barely breathing as a full code. I

was yelled at because the Nursing Home lost $50.00 per day everytime someone was

in the Hospital. I really did not care about their $50.00 per day and continued

to look out for my assigned patients and staff. They became worried they would

have to pay out to much money if I got sick again so the management and owner

began trying to get me to leave. They would have one of the new RN's leave

early every day and then when her work was not done with inspectors coming the

next day, had " told me that I will stay and do her work for her " , as she had

already gone home. I at this point told them NO and F You and walked out, as

truly my shift was over three hours prior. Never B4 had I ever done such a

thing but I refused to allow this place of employment to dictate to me and

jeopradise the life of residents under my license. I left there and went to

work in a small ER that was not a major trauma center like I had most always

worked at. I lasted six months prior to having to go out because the disease

went into full swing. It had attacked my lungs again, so another admission. I

had pain in my lower legs everytime I walked and still my Rheumy kept me on the

high dose Prednisone, refusing to put me on cellcept saying I want to save that

for when you really need it as there is nothing left after that. I was also on

MTX until it started to cause my lungs to worsen, causing pulmonary fibrosis,

and I had to go off that. I continued to get worse and my walking ability was

declining in distance.

I was so very ANGRY at the way things were going, I felt helpless as the Doctors

would not even do a test on my legs, they just ignored it. I wanted to go back

to work and generally was unable to accept what was happening to my body. Like

you said; , a person whom thought they were the one in control of their own

life. I was about to learn the greatest lesson of my life. One night our son

was late, even though he was 21, he lived under our roof while going to college,

so he had a curfue on weekdays so as not to disturd his Dads sleep. had

always honored that curfue. That is why I was up, I was worried. It was now

two am, I had fallen asleep in the recliner and heard a knock at the door. I

went to the door and there were two policemen at the door, I said; " Is my son in

some sort of trouble? " One of the policemen replied; " yes mame, he has been

hurt and we need for you and your husband to come to the Emergency room. " I

tried to get them to tell me what was going on, they at that point just said;

" He is hurt really bad and needs transferred to another hospital. " I was in a

state of shock, I didn't know how to crawl up those stairs to get my husband and

tell him his only son is badley hurt. I kept walking in circles at the foot of

the steps... Then one of the policemen Said; " Mame, you need to get there! "

That made me snap out of it and I went to wake my husband. We chose to leave

our daughter home as she was asleep and it was her next to last week of school.

We got to the ER and one of my Nurse Coordinators from when I worked there met

us at the ER door entry. I was still in a state of shock as she told us, " your

son has been electricuted and is burnt over his whole body. " I asked; " what

time this happened " as they were already ready to ship him out and it was 3 am.

She said; " he was brought in at 12 midnight " , his curfue. Then, we were told to

go get our daughter as the Ambulance was getting ready to leave to take him to

Temple University Burn Center. They would not let us see him. I waited another

three hours before being able to see my son as the burn unit took him to debride

his wounds before they would let us see him. It was horrible. He had no skin

that I could touch or kiss X-Cept for a small area on his forehead, left hand

and right foot. While in the waiting room, our pastor was sitting next to us

and one of the boys was with told us what happened. He told us that; " the

other my son was with, got up on top of this freight train because he

thought freight trains did not run on electricity. " He said; " that he and my

tried to keep him from going up there but he would not listen. " He went

on to tell us that; " Our went up there to get him off the train as the

other was screming as he had burns on his stomach and arms and that our

climbed up there, did a karate kick and kicked the other off the

train and knocked him out when he hit the ground. " He continued with; " the

train started to move right after kicked him and he lost his balance and

out of reflex grabbed the wire. " Oh, how was I angry at the other when he

showed up to visit my son! His parents never even said Thank You to us for my

son letting their son live! My died after a four day fight. That day is

a day that I and our daughter still have nightmares about. H e had no skin on

his body and all his tisssues could hold no more fluids, the bed he lie in was

just dripping on the floor with his body fluids as the faster they put them in,

the faster they came out. It wasn't long that his heart stopped and they coded

him. I thought; " how many times had I done this: coded someone's loved one and

then had to ask them or tell them we cannot continue, we cannot bring him/her

back. " So, when I saw the Doctor look over at me; I knew what she was going to

say and before she could get even one word out, I said to her; " I cannot tell

you to stop on my son, I can't do it. " My husband just stood there in shock as

he had no clue, the way I did, what was about to happen as the Doctor continued

walking toward us. The Doctor said; " We have to, we've been doing this for an

hour. " I said again; " I can't. " And then the Doctor said; " Well Iam going to

stop it, I am going to make the decision for you. " I pleaded with her as she

was walking back to his bedside; " Please, Please, No, don't " . When she stopped

it, I ran out of the ICU and into the Hall and fainted, falling on the floor.

When I came to, my husband and daughter was at my side and we all went in

together to say goodbye. I then had to deal with such a great loss and I

decided right then that this disease I have and all the challenges it brings to

me, will never be as bad as loosing my son. At that moment, I realized, I had

absoutley no control over anything! Oh, I believed in God and went to church

and was even Saved and Baptised; yet had never had to concede what it truly was

to give all into Gods hands. Now, all of a sudden, I understood. About a

year after died, my VA Doctor discovered what my private Rheumy and

Primary Doctor could not. My private Rheumy and private Doc. would only tell me

that my legs hurt because of Chris' death! Even though the pain started before

he died. My VA Rheumy was concerned by the fact that I walked in there a year

before and wanted to know why I was now in a wheel-chair. I told her I could

not get any help and when I'd ask my otherDoc's to test, they would just say it

was because my son died. I assurred her this just was not my personality to do

this and as I cried telling her to please help me that something is wrong and no

one will listen to me. She simply asked me to take my shoe off and felt for my

pulse--I didn't have a palpable pulse, she checked behind my knees and the

femoral arteries, no palpable pulse. She then ordered test and I found out that

my arteries in both iliac arteries were clotted off 98 and 99%. Then I had to

have stents. I wrote this because I want you all to note the fact that I was a

RN and these two doctors still would not listen to me when I even went so far as

to beg that they do something. That is really scarey to me.

Next, some have commented that people comment that they look good when they feel

bad. I almost did not put this out there for fear of scaring some of you; thus,

I am not being honest with you if I don't. Now this does not happen to all

people with auto immune diseases, it happened to me though and I have so

struggled with this. Yes, I used to look like you too, fine on the outside and

not so fine on the inside. People would make the same comments to me and like

you, I would be upset by that. I no longer look as if I am OK, the disease has

totally caused havoc on my joints, muscles, and tissues. Then when I weighed

199#'s on the steroid and lost all that weight: when I dropped to 5mg and to

104#, I look like I aged 10 years, as all that loose skin on my face looks like

wrinkles, then my back is hunched over due to seven back fractures when I was on

high dose steroids, it weakened my bones. I walk with a cane or walker due to

tripping on my floor and breaking my left hip. I no longer hear those comments

that used to frustrate me, now I wish I did still hear them.

Now for bigblow #2. Yes, I have told some that I did have a very loving husband,

and I did. We were married for 25 years. He however put me through the ringer

too, when in his mind, he was protecting me. Now, he did take some of his anger

out on me, right after died, though it was not frequent and it did not

last long. Sometimes, we just don't know whom else to attack but the people

that will still love us in the end. About 2 and 1/2 years after we lost our

son, his personality suddenly changed. He started to yell at me anytime I tried

to talk to him. When I would try to go and sit down by my husband and cuddle,

like we did frequently, he would put his arm out to stop me from sitting beside

him. I would even ask him, why are you pushing me away and he would just clam

up and say nothing. He would even yell at me in front of friends, which is

something he never did before. It was like I was living with someone that I did

not know. I became so depressed, as not only did he yell, and push me away, he

pushed me away with whatever means he could think of. I was told I was fat,

,and ugly and early on when I dared ask him how a certain outfit would look,

now all of a sudden, the outfit looked horrible on me, and when I'd say what's

going on...something does not seem right here, again he'd clam up and say

nothing. I even got him to go to counseling and HIS counselor told me that Jim

will never go back to the way he was before and you need to leave him. I stayed

and lived this way for a year, and by the time I left, there was not much of me

left. So, I left and came out to Arizona where my Mother and oldest sister

live. Soon to follow was our daughter. Less than one year after our Dicorce

was final, only 3 months after, Jim announced he had Lung Cancer and it was

inoperable. Our Daughter would fly back and forth taking care of him and me. I

began getting sicker and sicker after I moved to Arizona, it was way to much

stress for me. I felt as if I had lost everything in my life. Our daughter was

angry with me, as he never yelled at me in front of her--though she was away at

college and did not see either; she could not understand why I was leaving her

dad. When I'd try to tell her he was treating me badly, verbal and emotional

abuse, she'd just say, I've never seen him yell at you. She must have thought I

was crazy! Then Jim had told Kerri on the phone that he was doing better so the

Oncologist stopped his Chemo and put him on a pill of some sort. He always told

everyone in the family; including his parents, that he was better than he was.

I had figured out that he was not doing better and got worried that our daughter

was not spending enough time with him, I suggested her and the baby go visit him

for a month in June. He did not really want her there that long; but, I told

her to insist. I told her at that time that I don't think he is being honest,

things don't fit. I also reassured her that I would be OK and she can go... I

told her that I decided to go and stay in the Respite area of the VA and then

she would not have to worry about me and she could go for a whole month that

way. She agreed, and lo and behold, while she was there she confronted him on

my suspicions... He admitted to our daughter that he made me leave: telling her

that; " your mom is to sick to take care of me and this way it will make it

easier on her when I die. " She told him " what! " He then added; " I saw how

hard your brothers death was on your mom and I think this will make it easier

for her. " She called me the next day and I had her put her dad on the phone...

I wanted to hear it for myself. When he said those things to me; I told him

that: " Jim, you robbed us from having our end together and regardless of what

you think, no matter how sick I am or was, I would have made sure you were taken

care of. I then asked him if he wanted me to come and help him now. " He just

told me; " No, your to sick to take care of me. " We had other conversations on

the phone, though I hated doing so, I honored his wishes. Now, this all

happened in June, He continued to tell " all " his family members he was doing

better, even though he was worse. I told Kerri to call her grand parents and

ask them to go check on him and when they got there, they arranged a medical

flight on a private plane for him to be taken to their lake house. Now, his

parents are not medical and continued still to believe Jim when he told them he

had six months more to live. It is now August, I am in the ICU again, this time

the disease was attacking my lungs. I think all the stress over the last four

years just plowed me over. Jim, had just got to the Lake House and settled in,

Kerri's came to the hospital to tell me that her Grandmother was sending her a

plane ticket to spend christmas with them and her Dad, I told her I thought

that was a good idea. Jim died four days after he arrived at the lake house. I

couldn't even go to the funeral as I was still in the ICU. You see, my husband

found out he had cancer 2 and 1/2 years after our son died. However, he kept

this all to himself. Now that he has been gone almost five years, I think that

his doing what he did was not just to make it easier on me; even though that is

what he said; I think it also helped him to leave. I also know, he did what he

thought was best. Now, all can fully understand when I say he loved me, as he

did. Also, if I don't get to upset about things you might get upset about, it

is just that I am in a different place in my path. I truly hope and pray that

you never get to the same place on the path as me.

Love, Kathleen

Kathleen

May 22, 2011

Kathleen,

I'm really sorry to read that it's a bad day for you. I'll be here for you any

time and call soon. I know there have been times in my life that I haven't

grieved partly because of medication for mood stabilization so it wouldn't allow

me and also another reason is I think it would have surely broke my heart

physically.

I have to say this past winter I grieved after all these years of having Still's

for everything in my life since being diagnosed at 19 and cried all day and

night for a month and a half straight. I grieved everything lost, and never got

the chance to experience. You see I had spent all these last 33 years trying to

be grateful for the blessings I was left with that I didn't allow myself to

grieve truly for what was taken. Or for the daily pain and anguish I was living

with. I spent years in denial in a way. I thought it was a good way and it

probably was since it was self preservation and optimism that got me through and

allowed me to help others but in the end not dealing with the depression, pain

and anguish, almost took my life.

So with that breakdown, I have a sense of renewal in some ways. And a better

ability to fight the pain I think. I still have all the same issues but maybe

just a little more ability to identify them.

Now, if I could just keep up with all the members that I so want to write to

personally to see how they are or why they haven't been around.

Much love to you Kathleen and all,

The materials and information contained in this message are not intended to

replace the services of a trained health professional or to be a substitute for

medical advice of physicians and/or other health care professionals. The

International Still's Disease Foundation is not engaged in rendering medical or

professional medical services. You should consult your physician on specific

medical questions, particularly in matters requiring diagnosis or medical

attention. The International Still's Disease Foundation makes no representations

or warranties with respect to any treatment, action, application, medication or

preparation by any person following the information offered or provided within

this support form.

ion by any person following the information offered or provided within this

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May 22, 2011

Kathleen,

I am sending you a Cyber Hug. I wish I could help you have a better Day. I

can't believe how hard the last few years have been on. That is a rough

patch to go through, very rough. All I can say is that you are in my prayers

today and always and I am glad that you returned to the group and that you

have found a new path to be on.

With Hugs,

Alli

May 22, 2011

the situaTION WITH MY MOM IS STILL UP AND DOWN BUT I HAVE FINALLY CONVINCED

MYSELF THAT I CAN ONLY DO SO MUCH ON A BRIGHTER NOTE I AM PLANNING TO GO TO THE

CONVENTION IN2012 HOPE TP MEET YOU

________________________________

To: stillsdisease

Sent: Sun, May 22, 2011 5:28:52 AM

Subject: RE: My Life/Group Response/Very Long