Hi ASA Family!!!

Just a little update since SJ sent out an inquiry!

I haven't been posting much, but that doesn't mean that you aren't all
thought of often and prayed for regularly!!!

I am hanging in there, but it feels like just barely.

I have been off the enbrel and my mtx dose was reduced from 25 mg down
to
15 mg to try to cut down on the number of serious infections.   This all
happened in late march, and I have to tell you, my RA is NOT happy about
the changes.   My joints are screaming bloody murder with the pain.
Not a happy camper right now at all.  

My RD initially was going to start me on Orencia as he had been so
excited about it when it first came out.  He now is not as excited about
it as he was originally.   He said that since it is out and now more and
more patients are on it, it is turning out to be more risky than
originally thought as far as infections risks go.   He said they have
already seen some pretty serious infections from it and that at least
one person has died from those infections.  So, he wants to try the
Rituxin first and then if that doesn't work he will consider the
Orencia.   I told him I would leave it up to him, and that I really
didn't care what he chose, but to find something soon as my RA has
really started to get out of control a LOT lately.   Until he decides
what to use and then gets the approval for it, I have ask him to send me
to PT and OT in hopes of finding at least a little relief!

My hands are a mess and so very painful all the time.   Don't know what
to do about them.  

Have one foot that had gotten so painful to walk on and felt like I
literally was walking on a bed of hot coals all the time.  That foot
even burned something fierce even when I would just rest it on the floor
or any hard surface.   It got to the point that I couldn't even stand
the sheets or anything else to touch it.   Finally figured it was time
to go have it looked at.   The podiatrist was amazed that I was walking
around for so long with my foot like that.  He said I probably had one
of the worst cases of plantar fasciitis that he had ever seen.  He said
my foot felt like an oven it was so inflamed and throwing off so much
heat.   Wow, was I surprised!   I have had plantar fasciitis before, but
it just didn't feel like that.   The podiatrist now has me icing the
foot 5-6 times a day for 30 minutes each time and taking
800 mg of ibuprofen 3x a day.   I have to admit, it IS starting to feel
better!  He also told me I needed a new pair of shoes as the ones I was
wearing were totally worn out.   He will see me back on the 13 of july
to see how things are progressing and to see if there is any other
treatments needed to get things cleared up.  

Was up north over the memorial day weekend and had a nice time, although
it was a bit emotional as well.   Came back home and the old car broke
down.  Repairs were to the tune of $800.00!   Major ouch!!!

Then, if the car repairs weren't enough, my oxygen company decided that
they had misplaced the paperwork that proves I need the oxygen, so they
called me up and told me I needed to get new proof.  They  had 3-4
months worth of bills that they were sitting on until I could get new
proof.   Needless to say, I was not happy with them at all and after
many, many discussions with them, I finally called their corporate
office and raised a little cane.  The results === I still had to go
through all of the testing to get the proper proof for them to bill the
insurance companies, but they wrote off the 3-4 months of bills they
were sitting on and agreed not to charge me for any of the oxygen until
I could get the new proof they needed.   They also sent me a form to
request financial aid to cover anything that my insurance companies
wouldn't cover.   So, have spent the last few weeks going back and forth
to the lung doctors office to do the necessary testing.   Hopefully I
only have one or two more tests to go through.

Phew, talk about stress!

My lung doctor actually asked me on my last visit if I was depressed
because I didn't seem like my normal cheery self.  

I told him I probably was depressed and I had a right to be depressed!!!
What with the whole car repairs stuff, the oxygen mess, the constant
increase in pain all over due to not being able to take the enbrel and
the reduced amount of mtx., not to mention still struggling with the
grief of losing my brother!  

He asked me if I wanted an antidepressent and I told him that was just
what I needed, another medication that I couldn't afford!  LOL, poor
guy, he didn't know what to say after that!   We left it that he would
get several months supply of samples of my inhalers and also several
months worth of something called wellburtrin and I could decide on my
own whether or not I wanted to take the antidepressant.   We'll see.

Don't get me wrong, I have so very much to be thankful for!!!   I am
truly blessed to have incredibly caring and compassionate doctors, a
wonderful caring church family, and wonderful family.   It has truly
been a blessing to spend so much time these last few months with all of
my 10 nieces and nephews.   They truly all bring smiles to my faces and
can make me laugh at any time.   How lucky I am to come from a large
loving family!!!  I also am blessed by some pretty awesome friends both
in person and of course, on line!!!

I am also blessed to have fairly decent insurance!!!

So, don't want to sound like my whole life is in rough shape, because it
isn't.   It's just one of those times in life where life does start to
get to you and weights you down at times.   I'm sure in a month or so,
I'll look back and laugh at all of this.   But right now it is a bit
over whelming financially and yes, a bit over whelming emotionally
too!!!

Sorry this sounds so whiny!!!

Today it is exactly 8 months since my brother passed away, and I still
miss him something fierce.   I still can't believe he is gone!

On a more positive and up note, a friend of mine is trying to teach me
how to knit.  What a hoot that is!   This same friend also is involved
in a philanthropic type group that is called PEO.   She just had me fill
out paper work and helped me write a letter to try and get a grant from
them to help recover some of the costs of repairing my car and such.
I am hopeful, but also realistic, so if the grant doesn't come through,
at least the experience of writing the letter and going through the
whole process was a good learning experience.  

I pray that each of you has some improvement of your health issues each
and every day and that your lives are filled with many blessings and
opportunities to laugh!!!

I do think of you all often and do pray for you!!!

I post when my hands allow, which isn't too much as of late!

Thanks to each and every one of you for so openly and honestly sharing
here for all of us to share and learn from.   You all are blessings in
your individual ways!!!

Love you guys and hope you all have a blessed 4th of july!!!

Hugs,

Donna G
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PS.....where is Jo Firey, Joe, Kendall, and some of the other
regulars???   Anyone ever hear from the other Mary?   Melinda, we really
need an update on you and Logan and your family!!!   Johnie, how are YOU
doing and how is Acacia doing these days???   HUGS!!!