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.  

Thursday, July 4, 2013


I don't know how many times I started writing about Friday, February 8th.  Nothing too terribly eventful happened that day (the things that I do remember are that my Mom and Mama Jo came home from their cruise and Mom finally made it in to see me...and that's about it actually) but I'd start crying every time that I tried.  For weeks I'd go back and read some of my posts and become terribly saddened so I'd find something else to do.  I really wish that I would've pushed through and written about my experiences as I barely remember them now.  I remember that Saturday, February 9th Mama Jo and Mom both came to see me and I ended up being released that day!  I remember that Sunday, February 10th I went with the family to lunch for Nicholle's birthday.  At that point I could walk but I was in a lot of pain.

I can't remember if it were on Sunday night or Monday night that I got significantly worse.  One of those nights, around 2am, I stepped out of bed to make a quick trip to the bathroom.  I put one foot down and fell to the floor in immense pain.  I tried to get up but began crying in pain.  Both of my legs from my knees down were in excruciating pain and, for the first time, both of my hands were too.  I tried and tried but I could not get up.  I couldn't move or scoot myself anywhere.  I was 27 and had literally fallen and I couldn't get up.  My cell phone was out of reach.  I was terrified.  I was in more pain than I'd ever felt before.  I wasn't sure what to do.  I  lay on the floor and cried and cried and prayed.  I finally found a way to slowly inch myself with my shoulder blades and hips across the floor to the side of my bed.  It was only about a foot that I had to move but it took me until 5:30am.  When I reached the side of my bed I bit my lip as tears streamed down my face and I literally FORCED myself to roll over and get on my knees so that I could use my elbows to pull myself up and onto my bed.  After I made it into my bed I just lay there and cried.  And cried.  And cried.

That day Noelle came over to see how I was doing.  I told her about the incident.  Between her and my Mom they decided Noelle needed to move in.  She moved in on either that Monday or Tuesday and stayed until...well...she ended up living with me and my house until mid-March.  Anyway, she first moved into my spare bedroom but after a second falling incident during which I lay on the ground screaming her name for almost three hours, it was decided that she should probably move into my closet.  She put a blow-up mattress in there and moved right on in.

By Wednesday I couldn't do anything for myself.  I was in such extreme pain from my knees down and my elbows down that I literally had to be fed, bathed, dressed, etc.  Noelle carried me piggy back to the bathroom as needed.  Donna brought me a wheelchair so Noelle could put me in it and I could go to different rooms of my house.  I remember lying in my bed and crying while Noelle rubbed pain-a-trait lotion into my calves.  I remember another time that I fell and Noelle came to get me up.  I was on the floor and had managed to roll onto my back and get wedged at an angle on my bathroom floor.  She helped reposition me before we got me up but after I was repositioned she sat on the floor with me and we talked.  She thought I needed to go back to the hospital and that she should call an ambulance.  I told her that I absolutely would not go and to not worry because I had an appt with my Rhuematologist in Seattle that Friday.  I remember her calling Mom to ask her what to do.  In the end, I won.

Friday morning came and Mom, Mama Jo, my wheelchair, and I loaded up into my mini-van for our trip to my dr appt. that afternoon.  None of us really thought that I'd end up staying there and Mama Jo and Mom had joked that even if they did keep me, they were taking the van back home because they and their husbands had a double date planned for Saturday night.

I don't remember much about the drive to the hospital or getting to my dr's office.  The only real memory I have is when my dr walked into the exam room and saw me in my wheelchair.  She started to tear up and that made me tear up.  She leaned down and hugged me and I just remember her telling me that I was one sick little girl and she would figure out what was wrong.

Thursday, March 28, 2013


By Thursday, February 7th I had been getting insane amounts (the absolute maximum dose) of IV steroids (Solu-Medrol) daily for almost two days.  That is on top of the typical 40mg of Prednisone that I have been taking orally since November.  Much to my surprise, I wasn't feeling many side effects!  I was actually starting to feel a bit better!!  My ankle and foot pain was diminishing little by little and I could actually put pressure on them to stand and pivot myself in and out of my wheelchair instead of having to slide for my transfers.

When my hospitalist came in on Thursday he told me that he would be talking to the rest of the team, but he was pretty certain that they weren't going to transfer me nor do a PICC line.  He was happy that a difference was being made and even suggested that I may get to be released within the next few days.  That was absolutely wonderful news!  Not only did I "shout" it all over my Facebook, but I was ecstatic with everyone who came to see me that day!!!

Rick (my step-dad) was usually my first visitor of the day, he was also the only person I could early morning text!  He is an early riser and, although normally I'm NOT, in the hospital I had to be.  If I found myself bored, thinking too much, or just needing to chat I'd text him and he'd always respond.  When he came in to see me that morning we got to be excited about the news together.  On days that my Dad came he usually came an hour or two after Rick.  I can't remember if he came to see me that day or not but I know that he was excited when I did tell him.  After Dad it was usually Nicholle for her lunch break and then Julia on her lunch break.  The two girls were very excited with me, too!  In the evenings I could expect Rachel (and often her boyfriend Dan and his roommate Jordan) to swing by and she was VERY excited!!  Noelle typically came by in the afternoon or evening and I was blessed with many other friends who took the time to drop by.

Sadly, I can't remember everyone who came by!!  For example, Julie asked me the other day if I remember her and Livi bringing me a cupcake one day...I can vaguely remember Julie, I definitely remember hugging Livi, but have no recollection of the cupcake (although I saw it in one of my pictures and racked my brain like crazy to try and remember where it came from!).  I know that Lana came by multiple times, and Darci and boys stopped by with flowers and pictures from the boys.  I remember Travis and his girlies came by again and this time Katie brought me her Nintendo DS because she was very concerned that I was too bored.  Donna came by multiple times and I know that one evening/early morning (absolutely no clue which one) I was having a very emotional moment and feeling very alone so I decided that it would be okay to call her to help me through it.  Thank goodness she was so kind and compassionate that she actually answered her cell phone (it was like 2 or 3 in the morning on a work night!) and talked me through my meltdown.  I remember Rebecca stopping by and Joseph and Dianne and CJ and
my Bishop and Kim and Maggie and Kellen and Angel and Jamie and Jared and kids and my Grandma and my Aunt and Block and Ariel and I'm sure that there were more but, as I said earlier, my memory of this entire thing is so scattered!

Anyway, my point is that I am so very blessed and loved.  I am so grateful for each and every person who came to see me, sent something, wrote me a message, texted me, called me, prayed for me, and/or sent positive thoughts and vibes.  I particularly appreciate hearing from people that I don't typically talk to regularly.  One positive thing about going through this entire incident is that I've gotten to speak with people whom I haven't been in contact with for years.  :)

This is the best I've got for ya for this's the picture that I took and I saw the cupcake in but I couldn't for the life of me figure out how or where I got it from!  

Wednesday, March 27, 2013


Wednesday, February 6th remains a mystery to me.  According to Facebook I got TONS of love and support that day.  I just love, love, LOVE going back and reading all of the incredibly sweet and supportive messages that my amazing friends, family, and ward members sent my way.  The best part is that not only were they very much needed and appreciated at the time, but still today I can go back during my rough moments and use them to help give me courage to move forward.

I'm gonna have to rewind just a bit because it just occurred to me that I missed blogging about a VERY important happening!!!  On Tuesday, February 5th my VIP group from The Arc came to see me!!!  I love The Arc.  I love everyone there.  I have worked/volunteered there since I was 12 years old and I honestly see many of the staff as a second family to me.  Throughout the years I have helped in many programs (y'all have probably heard me obsess over my summer camp, Partners and Pals, once or twice!), the most recent of which being the VIP program.  It is an afternoon program that meets twice a week and is geared towards high functioning adults with disabilities.  We just meet at The Arc and go have fun.  Movies, crafting, cooking, shopping, are just a few of the many things that we all do when we get together.  This past fall I had to resign from working that program regularly as my health was so spotty but I still go back regularly to volunteer or fill in for one of the four staff who currently work the program.

Sandi, the original VIP leader, got hold of me and asked if it would be alright for her to bring some of the VIP members by (only some because we have about forty!) the hospital to see me.  :)  I told her of course it was and waited patiently that Tuesday afternoon for them to arrive.  Sadly Sandi had to stay in the van, but Phronsie brought up a group of about ten people to come and visit with me.  They brought with them a "get well" card that they had made and all signed.  They all squished into my room and hugged me one by one.  They gathered around the foot of my bed and asked me question after question.  They told me about things that they had been doing without me at VIP.  Some told me about their own hospital experiences.  It was so good, so soul healing to get to visit with them.

These are some of my VIP people out to a Thanksgiving lunch at Old Country Buffet back in November.  I just love every single one of them!!!


The night of Tuesday, February 5th and early morning of Wednesday, February 6th was not a good night for me.  It started out well; my adorable friend Kellen was on shift and got to be my CNA!  Initially I was a little worried about how that would work for us but it turned out to be beyond wonderful.  He was a perfect CNA, professional, but I knew that he really cared about me and that made a world of difference.  Plus, out of all the CNAs that I had throughout both hospital stays, he was the only one who could get my vitals while I was sleeping!!  He ended up getting to be my CNA three nights in a row and that really brought me a lot of peace.  Sadly, I'm sure I ended up making this shift of his hell.  I still feel terrible.

Shortly after Kellen and my new nurse came onto shift my IV became blocked.  They told me that they'd need to take the current one out and place it again.  I put my big girl pants on, held Kellen's hand, and let the nurse try two different times.  She finally said that she wasn't going to get it so she called in the most experienced nurse on the surgical floor I was on.  She came in, tried twice, and couldn't get it either.  By now I'm sure Kellen's hand was starting to bruise.  This nurse conceded and it was decided to call the most experienced nurse in oncology to come up and try.  She ended up getting it (just barely) on the first try.  This IV was now in the top of my left hand.  (I STILL have a bruise on the top side of my left forearm from the second nurse's attempt...)

By the time the final IV was placed my nurse, Kellen, and I were exhausted from the ordeal!  Maybe more me, but we were thrilled to have it over for sure.  It was late and I decided to try and doze off.  Side note: my good friend Danny had stopped by and brought me a few of his old button up work shirts earlier that day.  One of my favorite (lounge) outfits in the world is a men's button up shirt and a pair of my short sweat shorts.  I could live in them if I could.  I was so excited that he brought those for me; I went to bed that night in my favorite one of the few and I was just as comfortable as could be.  Between the new comfy outfit and the exhaustion from the activities of the evening, I fell asleep fast and was sleeping hard...until...

This picture is from the beginning of last summer (I think) but it is the perfect example of the clothing that I would wear 24/7 if it were acceptable, and the clothing that I had on this evening in the hospital.  A comfy men's button up shirt and comfy short!

About 3:30am I woke up because my chest was cold.  I was sleeping on my back and had my left hand (IV hand) resting on my chest with my right hand down by my side.  When I opened my eyes and looked down all I could see was red.  I slowly lifted my hand straight up from my chest and it was dripping blood from the pads of each of my fingers and my palm.  Clearly it was sitting in a pool of blood.  I looked at my chest and my shirt was literally soaking in blood from my neck down (I later saw that it was down to my hips).  I have this really weird quality about myself where I can handle emergencies perfectly so I didn't panic, I just calmly used my non-bloody hand to press for the nurse.  It took Kellen about ten seconds to show up in my doorway.  He walked in and said "I was just coming in to do...we'll probably have to wait on vitals actually...I'm gonna go get your nurse...we'll be right back."

Him and my nurse were back in no time and they both went right to work.  The nurse stopped the IV and wrapped what was left of the IV site and Kellen started cleaning up my bloody hand.  I sat and shivered as I was beyond cold at this point.  I was so nervous that I had flat out ripped out my IV and that they'd have to try and redo it yet again.  I watched my nurse very closely as she examined the site and equipment to determine exactly what had happened.  Eventually she came to the conclusion that the IV tubing had simply come untwisted from the actual IV and so long as I hadn't clotted it could likely just be twisted back on and we could continue it's use!!!  Before we could test that though, we had to clean up all of the blood.  It looked so much worse than it actually was as the bloody mess was at least half saline from the IV bag.  

Who knows how long this had been leaking all over me; when we removed my shirt there were dried blood stains all over my hips, stomach, and chest.  By now I had been in the hospital for so long and at everyone else's mercy that I honestly had no shame.  I was very sick and I couldn't do many things for myself.  Both Kellen and the nurse were the assigned caregivers for me that evening and this was the epitome of work and professionalism for them both.  It took the three of us to get me undressed, cleaned up, redressed, and the sheets/bedding changed.

This picture is actually of the original IV that was removed from me earlier that evening.  Who knew that there is THAT much tubing inside your vein when you have an IV?!  It definitely freaked me out a little bit.  You're welcome for sharing.

After the mess had been cleaned up it was time for my nurse to try and reconnect the IV.  Kellen and I both said silent prayers as she screwed the line back to the IV and went for the unlock switch thingy on the line.  They watched and I paid attention to the feeling in my hand and at the same time we all realized that it was still working and there was no clot!!!  Huge sighs of relief came from all of us!  They packed and taped the IV very tightly so that it wouldn't budge and with that the ordeal came to an end.  By the time all was said and done and I was good to go back to sleep it was about 5am and my blood draw lady was there to poke me.  The hospital morning routine started: blood draw, order breakfast, eat breakfast, take my pills, try to take a morning nap but get interrupted by my hospitalist doing rounds, etc.  Speaking of morning pills...

And these are just my morning pills...and don't forget that the IV was filling me with more meds too.

"Chip Away The Stone"

Monday, February 4th is a day that I don't remember much about.  Pictures on Facebook are telling me that Noelle visited me with Buddy and I finally had some of my pain under control.  I do remember that someone gave me the genius idea to go on a "walk" to get out of my hospital room...I can't remember who but I'm thinking that it was one of my regular visitors (Nicholle, Noelle, Rachel & Dan, Rick, Dad, or Julia).  And I think that Rachel and Dan took me on that first walk and it was wonderful!!  A few awesome people "walked me" while I was in there.  I'd hold and push the IV pole, they'd push me: it was wonderful!  I'm fairly certain that this is also the day that they came to my room and did an echocardiogram to check my heart.  I remember that the lady who did it loved Buddy and let him stay on the bed and snuggle with me while she ultra sounded my heart.  She would pet him with her ungloved hand in between pushing the buttons and he just snuggled up to my stomach and hung out.

And Instagram collage of the first few days of my stay at Kadlec.

Tuesday, February 5th is a day that was filled with doctors, planning, and information.  I remember that was the day that my hospitalist, cardiologist, ID specialist, and orthopedic surgeon held a telephone conference with my "team" from Virginia Mason (my cardiologist, rheumatologist, pulmonologist, dermatologist, and ID specialist) to try and figure out what to do next.  I was having my blood drawn daily and the local doctors at Kadlec were monitoring multiple things, particularly my white blood count (WBC), my C-reactive protein (CRP), and my Erythrocyte Sedimentation Rate (ESR).  In very basic terms, the WBC told my doctors how hard my body was fighting, and both the CRP and the ESR tell them about my internal inflammation.  With the amount of antibiotics that I was on all of those numbers should have been plummeting, however they were all rapidly rising which told me doctors that they were on the wrong track.

That afternoon my hospitalist came and had a discussion with me.  He explained to me that during the conference it was decided to put me on a very high dose of IV steroids and watch me for 24 hours.  It was essentially their last ditch effort.  If I began to rapidly improve then it was most likely a rheumatological issue and hopefully enough steroids would put whatever it was into remission.  If I didn't show significant improvement the team had decided that it would be best to ambulance transport me to Virginia Mason so they could invite in specialists from other Seattle area hospitals.  

I was also informed at this time that placing a PICC line was seriously discussed.  Between how difficult of an IV stick I was and how sick I apparently was, they all thought that it would be a good idea.  That terrified me.  By then I was pretty used to being poked.  I literally had my blood drawn every morning, I had had so many IVs that I couldn't keep track, each IV placement took more than one attempt, and over the past year I had been sent for blood work on almost a weekly basis.  One would think that I'd be exited about having a PICC so that everyone could stop poking me over and over again but for some reason it was THE scariest thought to me and I adamantly opposed it.  At this point everything was just a waiting game.

Just a few of the flowers that I received...they were such great reminders to me that I am loved and supported when I was having tough moments.

I took a lot of random pictures while I was at the hospital and drugged...this is one of them.  I imagine that was a bolus of Dilaudid she was giving to me but I don't know for sure.

Monday, March 25, 2013


I have said many, many times that I have the BEST family and friends.  I do.  Honestly.  Throughout this entire journey that is one thing that I am constantly reminded of.  Although there are many people in my life that I am so very grateful for, there is one in particular that I am forever indebted to: my youngest sister, Noelle.  She was at my home taking care of the guys when I found out that they were going to admit me.  As soon as I told her she immediately told me that she had my guys and the house under control and to not worry about a thing.  She went to her home that evening and packed up enough of her things to move into my home for who knew how long.

This is Noelle and I with Fred and John at Red Lobster for Fred's birthday last year.

I'm not sure if this is considered more flattering or frightening, but I secretly refer to her as my "mini-me".  She has a special place in her heart for people with special needs and really has a skill for it, too.  She is a natural caregiver and leader and can get along with anyone (if she wants to...).  Her and my guys get along marvelously and they just adore each other.  When I left for school many of the families that I did respite for started to use her, she regularly attends Arc events, she has worked at other group homes as well as mine, she volunteers at my summer camp, etc.  If I can't be home with my guys, she is who I would want to be with them.

Noelle sent this to me while I was in the hospital.  This is her and the boys all ready for The Arc's Valentine's Day dance.

I can't even explain the amount of peace I felt by knowing that Noelle was with my guys while I was in the hospital.  The stress of owning a business is great, the stress of being hospitalized is great, but knowing that Noelle could completely take over everything for me business wise is what made this entire ordeal do-able for me.  Honestly.  Knowing that she knew what paperwork needed to be done and when, she knew what meds to give to who and when, she knew the quirks about my boys and how to deal with them, she knew where they needed to be and when, knowing that I didn't have to worry about my home, my business, or my boys and I could just focus on getting better was of immeasurable worth to me and I believe helped me to heal faster than if I'd have had that stress to try and deal with too.

Noelle brought Buddy down to see me...and she did my hair, can ya tell!?!

Not only did Noelle literally save my business for me, but she made time to come down to the hospital to see me, too.  She packed and brought me things I needed/wanted from home, she drug Buddy down, and she always brought me/us good food!  And, once she got there I used her!  I would save my showers for her to help with, she'd help me change, basically she got to do all the dirty work.  (In all fairness, I've done all the dirty work for her all the times she's been in the hospital with her's just a special sister bond we have as the family caregivers apparently!)  

Various pictures showcasing the few days I spent at home in between hospital stays.

Noelle stayed moved in with me the few days I was home in between hospital stays and then for two weeks after I was released from Virginia Mason as well.  The days in between my two hospital stays must have been exhausting for her!  I was a full time job at that point but I didn't realize just how bad I was.  I'll tell that part in another post later, but for now let's just say that Noelle most definitely had her hands full and mostly with me.  

I will forever be indebted to my angel of a sister Noelle for all that she did for me this past two months.  Our middle sister Nicholle is absolutely wonderful as well.  I'll chat more about her and all that she did to help me through this in another post.  I am so blessed to have the two best sisters in the world.  They truly are two of my best friends and I can't even begin to fathom my world without either of them.  Seestas: I love you both with all my heart!  

"Sick As A Dog"

**Here is when the pain killers my memory gets pretty patchy...please forgive me if I forget things or leave things out!**

I remember being transferred upstairs from the ER to my actual room...and that's about all I remember from that night.  I know that Rachel was there and I know that I told everyone who came within ten feet of me that I was going on a cruise on Sunday and needed to be better by then (this was Friday night).  Thanks to cell phone pictures I took, I also know that Friday is when the doctors drew the first circle around my ankle rash so we could all see it grow or shrink.  And, thanks to my posts of Facebook I can see that Friday night is also when my pain started to get severe.  I remember that at that point it was a dull and achy pain in my ankle with sporadic sharp and shooting pains.  

I vaguely remember Saturday simply because that's when my hospitalist told me that I might as well give up my hopes of making my cruise as I'd be in there at LEAST two to three more days.  At this point we all thought that this was cellulitis and a few rounds of IV antibiotics would clear it right up and I'd be on my way with life.  I remember that an orthopedic surgeon came in and did an examination because I may have needed surgery on it...but I have no idea why or what he was looking for...all I know is that he said that I didn't need surgery which made me happy.  The pain was really getting out of control.  The doctors and nurses were having a difficult time getting on top of my pain because I had just spent three weeks on Hydrocodone thanks to the oral surgery I had to have.  I remember that both Friday and Saturday nights I spent a lot of time crying.  Slowly but surely the doctors gave my nurses the okay to increase my Dilaudid.  Before I knew it, Dilaudid was my new best friend.  

The smaller purple circle on my left ankle was the original rash.  The outside circle on my left ankle as well as the circle on my right ankle developed over the wknd.

By Sunday morning my ankle had not only gotten worse, but my right ankle was starting to hurt and swell too.  The previously red rash had turned into a large bruise.  I was still having a difficult time getting my pain under control and by now I had no use of either of my feet; I couldn't put any weight on them.  This is the day I was supposed to leave for my cruise with my Mom and Mama Jo.  Those two still went and I stayed behind at the hospital.  I made it no secret that I was unamused about the entire situation so my thoughtful friend Travis and his two little girls decided to bring that cruise to Mexico to me!  They showed up in my hospital room with sombreros, margarita glasses, Mexican themed necklaces, maracas, and even a mini pinata!!  :)  As if that wasn't fun enough, CJ came by with my dog, Buddy!!!  After CJ worked so hard to sneak him upstairs and I made a half hearted attempt to hide him from my nurse, we were informed that it's actually okay to have your dog at that hospital with you so long as you register him/her when arriving! They consider it "pet therapy" and believe that it aids in the healing process.  It was SO good to snuggle with my Buddy!

Buddy was just as happy to see me as I was him!

Monday, February 4th was a great was the day that I finally felt we somewhat had my pain under control!  It took an extended release Oxycontin every 12 hours, a rapid acting Oxycodone every 4 hours, and a PRN of Dilaudid every two hours to keep it managed.  I had gotten somewhat used to the hospital routine by this point: my vitals were taken every four hours, I had to have my blood drawn every morning between 4:30 and 5, my morning pills came about 7, my night pills came about 6, and we had figured out that I had to have something going in my IV at all times or my vein would collapse and we'd have to relocate my IV.  I think that by this point I'd had four different IVs by five different nurses and endured at least ten different attempts?  I'm a difficult stick; apparently my veins are finicky and delicate.

Sunday, March 24, 2013

"Critical Mass"

Monday, January 28th I woke up with a sore left ankle.  I assumed that I slept on it funny and went about my day with a slight limp.  Tuesday, January 29th I woke up and my ankle was even more sore.  Again, I ignored it.  By Thursday, January 31st I knew something was wrong.  My ankle was swollen and I could barely walk on it.  Knowing that I was extremely prone to infection due to the chemo drugs I was on, I went to a local urgent care center.  The dr there looked at it and pointed out that it was not only inflamed, but it was bright red and hot to the touch.  He said it was most likely an infection and prescribed me some pain meds and an antibiotic.

When I got home I called up my Rhuematologist in Seattle just to let her know.  She told me that she wanted me to go to the ER.  She was worried that it was worse than I thought and said that with my immune system she didn't want me to take any chances.  She finally convinced me so Mama Jo and I headed to a local ER Thursday afternoon.

At the ER the dr gave me an IV bag full of antibiotics in addition to the two oral antibiotics that the dr at the urgent care prescribed for me.  The ER dr also instructed me to return to the ER the following afternoon.  He said that it needed to be checked again for levels of inflammation and a few blood tests would be back at that point.

This collage is from my first ER trip.

This is a picture of my ankle, not shrinking, at home Thursday night.

Friday morning came and I could barely walk on my ankle.  No worries though, genius Nichelle still decided to go on the blind date that had been set up a few days prior.  So, Friday early afternoon I hobbled into Azteca to meet up with this sweet man who I'm sure would later end up regretting ever agreeing to said blind date.  We had a wonderful lunch, during which he insisted on coming with me to the ER.  I tried to convince him that it would be boring and long and that he didn't have to...but he insisted.  He drove me to the hospital and we got settled in a room.  It was at this visit that the dr decided I had cellulitis.  The ER dr decided that I needed to be admitted.  My poor sweet date stayed with me from our arrival time of 2pm until about 5pm when Rachel showed up and he felt comfortable leaving me.

It wasn't until about 9pm that they transferred me out of the ER and up to what would become my home for the next week and a half.