RE: been in hospital, lots of things going on

[Guest guest]

,

Yes, it seems you are having a rough go of it right now. I know how it is when

you feel hopeless and helpless when the medications your trying just do not want

to work for you. It is frustrating as the hope goes up with each trial of

medication only to be let down with each failure, again. It is difficult to

even imagine that there can ever be life without pain, and life without acute

illness, again. You feel like; " I've done this so many times before and I just

do not know if I have the strength, energy or desire to keep on fighting,

again. " I allow myself to become the one that is experimented on, again.

With all of that said Jenn, you know I had a rough go of it starting late 2004

and lasting till nearly 2007. Three years is a long time to have to fight when

your just not seeing a change for the better. I actually lived at the hospital

more than my own home between 2005 and 2006. This was the time frame when the

disease attacked my lungs, again...only this time it was unrelenting. I did

feel as it sounds you do now. Even my Doctors' thought I would die and told my

family so. I did not die obviously, I am still here. Late 2006 my

Rheumatologist as a last ditch effort tried cyclophosphamide, I was allergic to

it. So, she tried cellcept. From 2007 to 2010, I experienced a tremendous

recovery of the disease. That time frame was the best I have ever been since

the start of the disease in 1999. The road to recovery was a long one more due

to the loss of energy, muscle tone, etc... I had lost due to the acute phase.

Had I not fallen in 2008 and broke my hip, I feel like my recovery during that

time would have been complete. That experience taught me to not loose hope the

way I did back then. If my Rheumatologist had completly lost hope like some of

my other docs at the time did, more than likely, I would not have been here to

enjoy the three births and lives of my grandchildren. I also would not have

been here for my daughter. We do not know what our future holds, and we do not

know when our expiration date is. The best we can do Jenn, I think, is to keep

fighting, (or hanging on),keeping the will to " live life as full as we can " even

when we are faced with what seems to be a loosing battle. That loosing battle

just may not be a loss. Yes, I have damage to my lungs now from the last

episode in 2006; I now have pulmonary fibrosis or as my Doctor calls it;

" interstitial lung disease " . Now this battle I begin again, the PF is getting

worse with time. I know now, this time, not to loose hope. With the loss of

hope comes the loss of life. That loss of life may or may not be in the general

form of death....Loss of life can also be a loss of the ability to recognize or

enjoy what we do have. So Jenn, please do some soul searching and see if you

can " again " find the ability to want " life " and " live life " .

If you need and desire to continue with the Actemra, a port of cath could always

be removed when it is no longer needed. My veins are so shot now, every

hospital admission requires a picc line. Think of it this way, you will no

longer get poked so much. Yes, the possibility of infection is there...though

with great care you can more than likely manage that. Just make sure " those "

using your port follow the steps " they " know " they " are suppose to take in the

management and use of the port. Unfortunately, during my years of Nursing and

as a patient; I have seen " some " get sloppy with their technique and in my

opinion should just retire or change areas when " they " are at this point. You

may have to stop one person and request another if you run into this...Don't

just let this person continue if you run into this as it is your body and you

are the one that would have to fight the infection, not the person that is not

following proper guidelines.

Jenn, also honey if you were told to keep your leg elevated then you need to

keep it elevated. The reason is not that it will or will not hurt if you walk

on it. The reason is so that the blood does not pool in the lower extremity,

and the risk of clots. Hopefully the bleeding in the knee has now stopped. You

did not say if the doctors found the area that was or is bleeding. ??? Did the

doctor also order moist heat for your knee? If it is still bleeding; moist heat

would not be a good thing so, probably not...If it has stopped then moist heat

would help with the clot(s) and with the blood reabsorption in general. You

might want to ask your Doctor if he/she thinks moist heat would be a good

treatment for you.

Love,

Kathleen

I just know know how much more of his disease I

can take. I love you all

I wish I had better news to report. LOve Jen

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