Re: OT Alli and my first dose of Acterma

[Guest guest]

Hi Michele et al,

Thanks for asking! We are fine, no flooding here, but our three big babies

(our dogs) were not too happy about the storm to say the least, they got to

stay with us for part of the night. We have a dry creek, that is usually

dry except for when big thunderstorms roll through. Then they carry water

out to one of the lakes nearby. It was raging, but too far from the house

to do any damage. I saw that you son's studio had some damage and I am so

sorry for that! God Willing, the storm did not stop over us like it did on

top of Nashville. Some places are truly a disaster zone. We've been to

many of the places that they are showing on the news, like Oprymills and

saved at Opryland hotel. It's amazing to me that they will eve recover.

What a mess. But it is nice here today, and no chance of rain for a few

days, so hopefully that will help them start the cleanup.

I had my first infusion of Acterma yesterday. It went smoothly, but I woke

up with a cold. At first I was hoping it was a stills sore throat, but I

can sort of tell the difference between a stlls sore throat and fever and

something and then when I got up to make something for breakfast, I almost

past out.

ON THE GOOD SIDE, My back feels better and some of my joints feel better, so

I know I Have to give this a few weeks/months and my doc warned me I may

feel like crap after the first few infusions, but we are holding on to a lot

of hope that this drug will give me a piece of my life back.

How are you hanging in there Michele? You must of scene my rant and rave a

few days ago. I just sort-of snapped with the stress of my sister-in-law

being shot in the chest by some lunny nut job (she's a surgical tech and she

got shot at the hospital she works for) It was really stressful for our

family, but I was really frustrated that they could understand her issues

immediately, but don't really try to understand chronic illness. I don't

know if it is because they do not want to understand it or what, but I

started to feel real anger at them for rallying around her and never doing

anything for us. Maybe because they think - we don't want to try to help

alli and Rand for years and years. A couple week, sure, but years? All I

can think of is maybe is they are thinking. we have our lives to live and

this is going to get in the way. And as we all know, chronic illness, is not

just of a couple weeks. I am not mad at any of them anymore. I just wish

there was a great way to share what we got through with family members

without making any of them feel bad or guilt about it (especially parents).

But then I read your email about haning three surgies in a very short amount

of time and I asked myself what am I complaining about??? So what if you

hare temps all the time, that is nothing compard to what you (micelle) is

going through) - so enough with the pity party and on with Life - At least

Lift to the best that we can enj0y it! So Party on! Enjoy what we can when

we can - That's my new Life's Motto! Enjoy Each day to the fullest, one Day

at a TIME!!!!

And Remember, DON't Sweat THE SMALL STUFF.

Hugs to All,

Alli

[Guest guest]

Alli - yay for feeling a bit better but boo on the cold. I get my first

infusion tomorrow! I think we'll be infusions buddies, lol. I can tell too when

my sickness is not due to Stills. It's amazing how in tune we are with our

bodies. Things i would have ignored years ago i call the doc on within minutes

because I know pneumonia is knocking if I don't get antibiotics right in.

Glad the outlook is better today. :-)

Houston, TX