Monday, August 26, 2013

"Same Old Song and Dance"

When I was initially diagnosed while in Virginia Mason back in February it was the Rituxan infusion that pulled me out of my flare.  (I know that I haven't gotten to that yet in my chronicling of the story so this is gonna be a bit of a spoiler alert to anyone who is following or cares!)  The only approved meds to treat my illness are various forms of chemotherapy paired with heavy doses of steroids.  I was already on both of those things for the initial two illnesses that I was diagnosed with back in August and I absolutely hated them.  My dr did a bunch of research, including calling up the vasculitis clinic in Boston (I believe it's in Boston?) and decided that I needed to be put on the IV infusion therapy called Rituxan immediately.  It was a very aggressive approach, but my illness was rapidly progressing.  I didn't know it at the time, but I now know that if she didn't get it under control quickly my lungs and/or heart would be attacked next

Everyone's protocol is slightly different, but because my body had a reaction at the beginning of the initial dose, my infusions last 12-14 hours.  I have to have four of them spaced out a week apart, every six months.  I'm not in remission and I may never be, but my disease is being "kept quiet" with these infusions.  It's time for more infusions and my body is telling me so.  The exhaustion, aches, needs the Rituxan.  My dr is going to try to do the infusions a little differently this time to make things easier for me.  She is trying to do two infusions at once, but keep the rate the same so I don't react.  The plan is to have one 24-30 hour infusion done as an inpatient, then two weeks later have another one.  If we do that every six months we are hopeful that we can keep the disease "quiet"!

A few things about the Rituxan.  First of all, when does as four separate infusions they cost about $25,000 each.  That is $200,000 worth of medicine I am having pumped into my blood yearly just to survive.  Absolutely insane.  I'm very hopeful that insurance will continue to cover the majority of it...I'm not sure what to do if that stops.  Anyway, another fun fact about Rituxan is that apparently it's a pretty scary drug.  I say this because all of my drs continually act this way and tell me so.  The first two infusions that I had in February were done inpatient at Virginia Mason.  The last two were done outpatient at Yakima Valley Memorial.  As this is something I have to endure regularly for years to come, I've explained to my dr how much easier it would be for me if I could have them done locally in Tri-Cities.  (She is based in Seattle, four hours away at Virginia Mason.)  She said that if I could find a local dr who would agree to work with her to oversee my local care, that is a possibility.  I didn't realize how difficult that would prove to be.

Long story, short is that after two drs told me that they would't oversee local treatment as it's too risky, I finally found a local Rheumatologist named Dr. Peacock who has agreed to oversee it for now!!  He wants me to have my first treatment (the one this week) up at Virginia Mason because if I do have a reaction again, it would be during this one, and then the one in two weeks he will follow her exact protocol and oversee the infusion done inpatient at a local hospital!  I'm so very excited!  I love Dr. Stone in Seattle and she has gone out of her way multiple times for me and I will continue to see her as my primary Rheumatologist, but if Dr. Peacock will see me locally and for emergencies, I would be so appreciative!!  Hopefully everything goes as planned and this will work out.  I would love to have these infusions done locally so I can cut out the driving and then maybe I can have a visitor or two pop in and out so I will have less boring stays!!

Ohhh, the all too familiar face of an IV drip machine...I am getting myself well trained at silencing these at the various WA state hospitals!

"What it Takes"

There are different types of "exhausted".  There's "typical exhausted" the type of exhausted one gets when they chase around multiple children all day, pull an all nighter, or exercise excessively...and then there's "extremely exhausted" you might experience if you attempt to do all three aforementioned activities.  And then there's one type of "exhausted" that healthy people just can't understand.  The "chronic exhaustion" is something that most people with chronic illnesses, particularly autoimmune related, can all describe to you as far above and beyond "typical exhaustion".

I'm not trying to downplay typical exhaustion.  Exhaustion of any type is not fun!  I'm more taking a moment to vent and try to explain a bit about chronic exhaustion that is associated with an illness.  You know that type of exhaustion that your body feels when you have the flu?  The type that makes you physically hurt all over?  That winds you while walking from one room to another?  That makes you so tired that even thinking about moving stresses you out?  That.  That is the type of exhaustion that is associated with my illness.  (It is associated with many various chronic illnesses, but for the purpose of this post, from here on I will only be referring to myself and my illness so I don't misspeak for anyone else.)

I have anti-synthetase syndrome associated with the PL12 antibody (ASS...I love that I have "ASS" disease!!  LOL!), myositis, and leukocytoclastic vasculitis (LCV).  All three have 'extreme exhaustion' associated with them.  For me, some days are much better than others.  Today was a rough day.  It began by having a rough night of sleeping due to pain and who knows what else.  After a combined total of about four hours of sleep I was up for the rest of the day...but not at all productive.  Everything that I did today hurt.  All of my joints.  All of my muscles.  I showered and cleaned the microwave...massive successes in my book for the day.

Also, I have discovered that when I eat whole, raw, and organic foods I can absolutely feel a difference in my body.  Staying busy helps, as does trying to stay as stress free as possible.  The flip side of all of that is that eating better typically requires more money and energy, staying busy requires energy, and relieving stress...well...I don't do too poorly in that area.  :)

Looove my new juicing habit!!  :) 

Monday, August 19, 2013

"I'm Down"

Friday, February 15th.  My appt with Dr. Stone at Virginia Mason was at 2pm.  By 3pm I had been lifted onto a gurney and was being taken to the dermatology section of the hospital for biopsies.  I loathe biopsies.  At that point I had only had one on my chest and, as you may remember, I literally passed out during the removal of ONE stitch.  Anyway, I didn't have a choice and wasn't really informed of too much.  All that I knew at that point was that I was going to be admitted into Virginia Mason, that I was very sick, and that I was in so much pain I couldn't even move myself.

The worst pain that I remember feeling was during the three biopsies that were done on the outside of my left calf.  I remember laying on the table and looking at the white ceiling and bright lights.  I remember that Mom and Mama Jo were at opposite sides of my head holding my hands.  I remember that there were multiple people in the room and that one woman was instructing another woman how to do the biopsies.  I am 100% positive that I felt everything.  They were punch biopsies and each one made me scream and writhe in pain.  i know that my Mom either cried or almost cried during this.  I remember her asking them if they even numbed me and they all tried to figure out why it was so incredibly painful.  I have no idea what the problem was (the punch biopsy on my chest months prior didn't hurt at all when they did it) but there was most definitely a problem and I felt everything.

The next memory that I have is of me being on the gurney and pushed through halls on my way to my room.  I was lifted onto my bed and they rolled the board out from under me as they re-positioned me to be sitting up in my hospital bed.  I remember being absolutely mortified that I couldn't physically help them at all and was completely at their mercy.  I was still crying from the biopsies, in severe pain all over my body, scared, and royally peeved that I was being admitted.  Then I found out that I had to share a room.  Ugh.

Sharing a room ended up being an extremely important blessing that I desperately needed.  I was moved into a room with two of the most wonderful women, Diana and Robbie.  Robbie was recovering from a surgery and her partner Diana was by her side the entire time.  Those women quickly took me under their wings and became vital parts of my hospital stay.  I was blessed to be in their room with them for about two days before they moved to a private room down the hall (of course I made Mom and Mama Jo take me to go see them daily my entire stay!).  That first night there I was in immense pain.  The nurses weren't doing much to get it under control.  Mom and Mama Jo stayed with me for a few hours and then went to get dinner and find a hotel.  At that time Diana stepped right on up as "stand in Mom".  She told me stories, got to know me, and made certain to get a nurse every single time that I whimpered in pain even if I told her that I was doing "just fine".  That entire night she took care of me.  I honestly do not know what I would have done that evening without her.

I can't remember much about the first few days.  I know that my sweet friend Amber came to visit me every single day that I was there.  Being in Seattle, four hours away from my home, I didn't really expect visitors.  I was grateful that Mom and Mama Jo stayed as that was more than I honestly expected.  My friends and family went above and beyond.  Amber came and saw me daily, her boyfriend Mitch came with her a few times, my best friend Laura's sister Marie came and brought her daughters (and her husband ended up helping Mom and Mama Jo out with a discounted hotel room for the majority of their stay, too!) as well as some amazing homemade chocolate chip cookies, a friend of mine from high school named Amber Spink came to see me, another friend from high school, Phillip Matson, came and brought his new wife to meet me, Kathryn and her super adorable little girl Brynn, and my friend Shawn planned a trip to visit his family there and made time to surprise me with a visit!  After they moved rooms, Diana came to visit me multiple times daily.