"You Got to Lose to Know How to Win"

I have had a little over half a dozen trips to Seattle (a four hour drive) over the past few months for a wide variety of appts, tests, and procedures at Virginia Mason.  One time I forced my friend Brad to come with me, and another time my then boyfriend Travis came.  The other times I go alone.  I actually enjoy road trips much more when I'm by myself and sometimes the hospital portion of things is easier solo.  Friday's entire trip was not easy going solo.

Julie had offered to try and free her schedule to come with me and CJ said the same thing, but I feel terrible having my friends take days off work and rearrange their lives just to come with me.  So, I declined them both.  I am fairly strong.  I've been through a lot in my life.  I've been an adult since my parents divorced in fourth grade.  I figured that, just like most of the other appts, I could easily handle it.  I was wrong.

It's been a really emotional past week or two for me.  I cry at the drop of a hat.  Anytime that I spend alone I tend to start thinking...which leads to over thinking...which leads to tears.  Is there an off switch to my brain anywhere?  Now would be the time to let me know if any of you have the answer.

Mix all of the free time that I had, with my two appts and I was a mess.  I held myself together on the way there, but within about half an hour of check-in I had tears.  I was in my first appt with Dr. Stone and we were discussing things.  First thing was that my dermatology office didn't put the rush on my biopsy like they said that they would so we couldn't confirm a dx (diagnosis).  Then they faxed over PA-Davis' chart notes and after Dr. Stone read them, she told me that they aren't sure that it actually is Dermatomyositis.  That brought on the tears.  She quickly explained to me that it is definitely a form of Myositis and we're on the right track.  As soon as the pathology report comes back we'll know for sure.

Apparently the term "Myositis" (which really just means "muscle inflammation" and can be associated with many different things...mine is surely associated with an auto-immune disorder/connective tissue disease) could be compared to a term such as "Infection" in the sense that it's general, and then there are subcategories or different types.  It is determined that I have myositis for sure.  I could have Dermatomyositis, or I have an insanely rare form of myositis that doesn't even have an official name yet.  She explained to me that when testing for things like this through blood work they look for an antibody that your body has created to combat an illness.  Once they find which antibody is present, that tells you which illness your body is combating.  (I think that I'm explaining that right...at least that's how I understand it.)  My body has a PL12 antibody (but not the Jo-1...which is apparently important) that shows up when doing a myositis panel.

**Skipping ahead real quick**  At my second appt Friday with Dr. Gerbino, my Pulmonary Specialist, he tried to explain the same thing to me and told me that he thinks I have the rare, unnamed form of myositis as the rash (I hate that word!) on my chest isn't characteristic of a Dermatomyositis rash.  He wrote down on a piece of paper "Myositis: Anti-Synthetase Antibody Syndrome PL12" and sent it home with me.  Another reason I should have had someone go with me: so they could have paid attention to what he was saying!  All I heard was "extremely rare", "very recently discovered...as in if you had this panel run five years ago they wouldn't have been able to detect this", and "we don't know what all is associated with it or exactly how to treat it because it's so new and rare".  I also remember him telling me that he wants to see me again in a month to check up on how my breathing is.  Oh, and he said that we're gonna become good friends...monthly appts until my lungs appear stronger and then appts every three months for at least three years to do a Pulmonary Function Test (PFT) and check-in on things.

**Going back to my first appt with Dr. Stone**  After she got me to stop crying, which took a lot of effort because as soon as I started crying she hugged me which made me cry even more, we discussed treatment.  She said that she wanted to start me on a moderate dose of Prednisone, 40mg.  Then she immediately said that I would gain weight.  She said that it'd be in my core and my face.  I expressed to her my deep concern about the weight gain and we weighed (haha...no pun intended!) the emotional damage of taking that high of a dose versus the physical damage of not taking that high of a dose.  We decided (okay, she actually decided with my input) to cut the dose in half and take 20mg of Prednisone daily to begin and supplement that with a drug called Hydroxycholorquine.  She gave me 5mg tablets of Prednisone though so that it will be easy to adjust the dosage if we need to.  I will still gain weight, but hopefully it will be at least a little less than if I were to go on 40mg.

I'm supposed to keep in contact with Dr. Stone weekly to update her on how things are going and if I'm seeing an improvement.  She said that once we find the right dosage, I'll probably be on it for at least two months before she even thinks about trying to taper it down.  She says that while my MRI didn't show significant muscle damage to my thighs yet, my CPK (some enzyme or something in your blood that shows muscle damage to your heart and lungs, I think?) is rising steadily.

I'm getting a headache thinking about it all and I know that I'm fuzzy on a lot of the details.  The jest of it is that I didn't like Friday, I cried a lot, this is frustrating, and I've got many dr visits in my future.  I'm exhausted and heading to bed now.

And, just in case anyone was wondering, I'm now twelve hours into steroids and I have yet to throw anything at anyone.  Disappointing, I know.  (Tami, I'll let you know as soon as I do...you keep those remotes hidden!)

Crap.  I just remembered people like pictures.  Let me go find one...

Hey, look!  It's Tami and I!  Miss Tami and I go way back.  She is self admittedly not someone who deals so well with crying people, but I tell you what, that woman can make me roar with laughter!  In fact, I think she was the only reason I had any laughter at all Friday! 

"S.O.S."

I know that I'll be starting steroids (Prednisone) after my appt tomorrow.  I don't yet know what dose Dr. Stone wants to start me out at, but according to most online information (which we all know is always completely accurate!) it will be somewhat high.  Obviously every drug effects every person differently.  Since I've never taken steroids, I don't yet know how they will effect me.  However, we do have family experience with this drug and it makes me worry a little...

My youngest sister, Noelle, has been on and off Prednisone for years due to her severe Chron's.  Every single time that she is on it for longer than a few weeks she gains weight.  Significant amounts.  Usually a lot in her face.  She gets very moody and emotional.  She gets "roid rage".  One time she threw a remote control at my Mom's head.  At the time Mom didn't think that it was so funny.  Now it's a family joke to keep all throwable objects away from her (and now me) when on the roids.

After I voiced my concerns about taking the drug, my PCP, Dr. France, pointed out to me last week that there will also be many positive things that happen.  The rash on my chest that everyone thinks is acne will disappear therefore stopping the constant scarring that has been happening the past six months or so.  I should be able to breathe better.  I may be able to swallow solid foods without the assistance of water.  I will hopefully have fewer "bad days" when it comes to my body aches.  And, most importantly, it should stop the regression of all of those things that has been happening so rapidly.

The single fact that prior to the wide spread use of Prednisone to treat my disease it had close to an 80% mortality rate but since then the mortality rate has dropped to below 20%, is the main reason that I won't fight it.  I kind of like living.  But I'm tellin' ya'll what...I'm scared as hell to see which negative side effects my body and mind will experience!

Just as a precautionary measure, we should probably keep all sharp and throwable objects away from me for the next few months, someone might want to check in every once in a while to make sure that everyone (including Buddy) in my house is still alive and uninjured, everyone should tell me I'm looking good even if my face has tripled in size and I start to waddle, and please, PLEASE forgive me for any outbursts (of sadness, anger, I've heard even elation and euphoria are possible) for the next little while.  The week that PMSy Nichelle and Nichelle on roids collide may call for a tag team effort of hiding sleeping pills and/or Xanax in my food at regular intervals.

Me and my beautiful sister Noelle while she was not on the roids:

And Me and my still beautiful sister Noelle while she was on the roids:

Let me close with saying two things:

A) Hopefully I'll take after Noelle and be able to pull off the puffy look as flawlessly as she did!

B) I highly doubt that Noelle knows what a "blog" is or how to access one or that I have one (much less six) so let's all keep this post and pictures of her hush-hush, k!?  :)

"Flesh"

Is it just me, or are those blue spots all over my leg not normal?  I swear they're not bruises.  And they just disappeared about an hour later.  And I wasn't cold, I was in the bathtub.  My fingers do that multiple times daily because of my Raynaud's, but my legs?  Really?  That was new.  (Okay, newish; technically it had happened twice over this past summer but never this much area of my leg was covered.)  I really don't understand my body...

"Lord of the Thighs"

During the phone call from Dr. Stone last week, she explained to me a few tests she needed me to schedule here in Tri-Cities and have done before my appt in Seattle with her Friday.  One of which was an MRI.  An MRI of my thighs.  She wants one normal MRI of them and one with IV contrast (of course...because needles are my FAVORITE!).  I'm not exactly sure what it is that we're looking for in this, but I remember her saying it had something to do with inflammation and weakness.

Part of my issues have been muscle weakness and early fatigue.  It's not extreme, but my muscles are significantly weaker than they typically are and will randomly just turn to jello.  Along with that I'll get extreme body aches.  I'll literally wake up feeling like I had run a marathon the day before...which, if you consider walking from one end of my house to the other "a marathon", is very true.  Every muscle in my body will ache and hurt.  It's a cross between flu-like hurt and sore from exercising immense amounts hurt.  And it's random.  For me, it will usually come out of nowhere and last a few days to a few weeks.  It's debilitating and will literally make my morning routine go from twenty minutes, to about two hours.

Other times I'll be doing something repetitive (most often I find that it happens to me when I'm climbing stairs) and that muscle that I'm using will just turn to jello...and after very little work!  For example, I was climbing the bleachers at the Seahawks game last wknd (GO HAWKS!) and after about ten bleachers my right thigh lost it.  I had to stop and shake it out and mentally force it to go further.  And that was on top of my gasping because my stupid lungs work at 60% right now.  I'm 27, in relatively decent shape, and can't climb stairs.  How embarrassing.  

Anyway, I had the MRI done last night (I accidentally scheduled it over the Seahawks game which was like the worst mistake of my life!).  It took about two hours to get them both done.  The tech who put in my IV was good, thank goodness, and got my vein on the first try.  I've literally had my veins poked over a hundred times in the past six months so I've gotten really good at giving good directions as to which vein and which part works best.  Sadly, my best vein and the best part of it is now covered in significant scar tissue so sometimes it takes a bit of work these days.  Anyway, IV went fine, MRI went fine (especially since my techs were able to find the game and put it on the headphones for me!), and I was even able to catch the last quarter of the game on a tv down the street with my friend Block when I was done!!

They said that they'd get a rush read on the MRI so that Dr. Stone can have the results by my appt Friday.

So, I know that pictures are entertaining so I'm trying to include pictures in my blog, but I feared that the techs would look at me funny if I made them wait to put me in the machine so I could take pictures of it and the room...so instead you get a waiting room picture!  I had this done at Kadlec and, after the amounts of time I've spent in waiting rooms of doctors offices and hospitals throughout the Northwest here I've come to the conclusion that the Lourde's hospital waiting room is my favorite.  Here is the Kadlec waiting room:

It's not bad.  It has nice, newer, comfy chairs.  There is a piano behind me.  It really wasn't a bad waiting area...but I LOVED Lourdes.  I didn't get a good picture of Lourdes, I took more of an abstract picture:

That is me in the Lourdes waiting room enjoying an amazing Iced White Mocha, sitting in the comfy chair, with the cool carpet, and the absolute BEST part...the gigantic water wall fountain to my left!!!  It took up the entire wall and was SO peaceful!  It was by far my favorite waiting room.  Just in case you were wondering about the waiting rooms at various hospitals...you're welcome!

"Under My Skin"

I hate needles.  I have had to get used to blood draws and IVs as I have been having one or the other bi-weekly for the past six months or so.  However, I cannot seem to get over the mental block on shots.  When drawing blood or placing an IV the needle is much bigger...but I cannot handle a shot!  So, when Dr. Stone told me that I couldn't avoid a skin biopsy any longer, I was HIGHLY unamused.

It's one of those things that everyone says isn't a big deal.  It doesn't hurt, it's easy, it's routine, everyone's done it, blah, blah, blah.  But I cannot get over the mental knowledge that something will be injected into me and then a chunk of me will be hole punched out.  Yuck.

I had two dermatological appts in relation to everything going on earlier this summer and at both, PA-Davis insisted on doing a biopsy.  I told him no.  At the second appt he told me that the next time I saw him, I was getting biopsied.  I thought "no problem, I'm just never coming back!"...but then Dr. Stone didn't give me an option.  Crap.  Not only did I have to have a biopsy, but I was WRONG!  I'm never wrong!!  Okay, I'm often wrong, but I still hate being wrong!

So, this morning I Xanaxed up and headed in for my biopsy.  He is convinced that it's Lichen Planus and was skeptical about it being Dermatomyositis.  He said that there was obvious inflammation and that it wasn't normal and was definitely autoimmune related but he hesitated to go along with the Dermatomyositis belief.  I told him that my myositis panel came back positive and my symptoms aligned and as he examined the bumps on my chest that look like acne (ohhh joy), he eventually said that it's a good chance that it could be either.  He said he'd put a rush on the pathology findings so that hopefully I can have results by my appt Friday.

The biopsy itself, of course, wasn't bad.  The shot to numb it was the worst.  I refused to look at the tray with all the tools on it and just kept my eyes closed the entire time.  The bump they wanted to remove was of course in the middle of my chest.  Although, my chest is already covered in scars from these little bumps anyway.  I was told months ago that every time a bump showed up, it would scar.  No matter what.  And, that was definitely correct information.

I'll eventually post a picture of the scaring, it's not pretty and I'm quite self conscious about it...especially since it just looks like acne.  But, speaking of pictures, I am a little bit into gross medical things so I have a few pictures from today to show you!!!

So, I'm freaked out about the biopsy and the idea of it and the needles and everything else involved, but as soon as it was over I was back to loving everything medical!  So, here is a picture of the actual biopsy that they took!

And here is a picture of the two stitches after they sewed me back up!  All of those white spots around it are scars now...my chest is covered in them.  Ugh.

"Ain't That A Bitch"

Sorry y'all, I know it's only the third post and I'm already cursing!  But, for this specific post, it was really necessary!  Just follow me here.

On one hand, "YAY", but on the other hand, well, refer to the title.  I FINALLY have a "probable" diagnosis!  After a bit of phone tag, my Rheumatologist at Virginia Mason, Dr. Stone, got hold of me this past Wednesday.   She told me that one of my blood tests that was ran during a visit two weeks before (my myositis panel) had been completed and it came back "absolutely positive".  My symptoms completely align, this blood test was positive, so all she needs now in order to be able to change my diagnosis from "probable" to definite is a positive biopsy.

We spent almost half an hour on the phone discussing what we needed to do immediately.  I had an appt to see her in October but she told me that it was imperative that I fit in an appt with her next week, so, I am now seeing her next Friday, September 28th to discuss and begin treatment.  She explained to me that before that appt she wanted me to have two MRIs done on my thighs and to get a skin biopsy done.

So, what is this diagnosis you ask?  I'm so glad that I'm typing it to you instead of trying to say it to you...I have no idea if I'll ever get the pronunciation of this down: I (probably) have dermatomyositis.  It's a rare (of course it's rare!) autoimmune disorder that causes skin rashes, weakens your muscles, and causes inflammation.  The link I attached (I'm still patting myself on the back for figuring out how to do that) gives a pretty basic explanation of it.  Of all the listed complications (I'm still waiting to see the weight loss from the dysphagia...hint, hint body!), the only one that I have yet to experience (knock on wood) is the calcium deposits.  Oh, and my aspirating has yet to lead to pneumonia, whew!

Moving on down to the "associated conditions" part of the list is a little less than exciting.  Raynaud's is the very first thing that I was diagnosed with.  In fact, I'm now on medication for it because apparently when one's fingers turn blue multiple times daily it's not good for the long term health of said fingers.  We then see 'other connective tissue diseases' for which I'm currently being checked for.  Lupus and Scleroderma seem to be in the top running.  Next you have 'cardiovascular disease' which I am being monitored for as the right side of my heart has been slightly inflamed each time they've done an echocardiogram.  Fourth on the list is 'lung disease' which is also being investigated in me as my lung capacity is now at 60% for no obvious reason.  And, last, but certainly not least, you have the increased risk of cancer.  We will be doing scans, tests, and biopsies over the next few weeks just to make sure that can be thrown completely off the table (although I'm really not too concerned about that as I've been worked up and over for the past six months and no cancer has been found thus far).

"Preparing for your appt" and "Tests and diagnosis" are sections that I skip as I've been through all of that.  Next up is the "Treatments" section!  I assume that first sentence about how quickly starting drugs gives you the best chance is the reason that she is insisting that I visit her next week instead of waiting.  While Dr. Stone and I didn't talk too in depth about specifics when it comes to my treatment, if you do any amount of research into this, it is very obvious that I will be starting a high dose of steroids.  Hopefully that will be enough to significantly improve my symptoms, as the other drug therapies include chemotherapy and insanely expensive IV infusions...neither of which sound terribly thrilling.

So, this has all been a lot to take in.  I'm seriously SO happy that we have a lead, something to try and fix, an explanation to all of the random things my body has been doing!  I was kind of hoping it was all just a bad allergic reaction or some random infection that could be cleared up with antibiotics, not a chronic condition...but at least we're getting somewhere!!  I've had my moments in the past few days where I panic a little.  What if this isn't it?  What if I have another connective tissue disease on top of this?  What if my lungs never regain strength and the rest of my life is spent trying to keep them at 60%?  What if there is a hidden cancer in me right now?  What if I'm in that relatively high percentage of people who for some unknown reason develop cancer within the first three years?  What if it's cervical cancer and I can't have kids?  What if the treatments for this challenge my abilities to have kids?  I could REALLY go on about all the "what ifs" all night long, but, in all reality, they aren't weighing too heavily on my mind.  In fact, I'm pretty sure that Julie is more worried about me and this right now than I am!

Don't get me wrong, I have my concerns, but when it all comes down to it, it's all unknown right now so why worry?  All I know is that right now I have a hard time breathing and swallowing and keeping my stamina up.  So, I rest, I have water with me always, and I use my inhaler.  I have two MRIs on Monday night, a biopsy or two Tuesday morning, and an appt in Seattle Friday morning.  So, I'll take them each one day at a time and we'll just wait and see what happens.

No matter what, I'm Nichelle, I've got this!

PS-I hear people like pictures in blogs, so here is a picture of Julie (the one who seems to think that a chronic illness with a high association with cancer is a big deal and should stress me out) and I a few years ago at a Tri-City Americans hockey game together!

"Let The Music Do The Talking"

So, if you haven't picked up on what I've got going on here already, I'm gonna pull on my favorite band Aerosmith for help in this blog.  As I mentioned, this is my sixth blog.  The only one that I think I have a somewhat clever name for is my dating blog which I call "Just Call Me Grace" because I'm the clumsiest person on the face of the planet and since I was young my Dad would refer to me as "Grace" every time I did something less than graceful...which was daily.  Now that I read the "story" behind the title of that blog, it's not even clever!  I draw your attention back to the fact that I'm easily amused.

Speaking of easily amused, I'm so highly amused by this Aerosmith idea that I came up with/stole.  After I spent two hours trying (and failing) to unzip the file with the template that I wanted for this blog, I decided to try and put some more energy into the name.  I am not quite sure what I was looking for or expecting when I typed "blog titles" in the yahoo search bar...it's not like I am gonna steal someone else's title...but it ended up fueling my genius idea!  I came across some article that talked about picking key words and shocking people, blah, blah, but in the comments section a professor mentioned that one of his students had used lyrics from various Queen songs to title his papers all semester long and he found that amusing.

Of course that's amusing!  That's great!  I love music!  I love lyrics!  I love Queen, but who do I love more...Aerosmith!!!  And how many songs do they have!?  About a million!  So how many lyrics do I have to choose from!?  About a hundred million!  (Yes, that's exact math.)

I KNOW you can't wait to read the posts titled "Mama's Little Baby Loves Shortenin' Bread", "Eat The Rich", and, of course, "Dude (Looks Like A Lady)".

"Back in The Saddle"

This is my sixth blog.  Each one is about a different thing.  I'm a bit OCD (my movies are organized alphabetically, my clothes are hung up by color and sleeve length, and my books are organized by genre, then height).  Having one blog for multiple subjects, like most normal people, just doesn't sit well in my mind. So, I have one devoted to my life as a foster parent.  I have one devoted to my spiritual side.  I have one devoted to the genius moments that my sisters and I have in life.  I have one devoted to my dating life.  I have one that is completely secret and I allow no followers.  And now I have this one; my only public blog.

I'm not great at writing.  I don't think I convey my thoughts very well.  I'm a bit scattered.  Okay, a lot scattered.  I use too many commas, I use insane amounts of incomplete and super short sentences, I have been known to write run-on sentences, I attempt to use ten dollar words but I do so incorrectly, it's just a mess.  However, I find that writing is therapeutic for me.  Especially when I write and know that someone, anyone, is reading it.  

Anyone who knows me knows that I talk a lot.  A lot a lot.  I am a pretty open person.  Being open, honest, and laying everything out on the table helps me to deal with things.  It helps me to feel supported.  Everyone is completely different and I can guarantee that there are things that I have shared and will share about myself that others would never, but for me, it is beneficial.  Don't get me wrong; there are specific emotions and moments and pieces of information that I do keep private and/or I only share with a few very close friends, but overall I lay a lot out on the line.

Now, about this blog.  I have been having some health issues this past year.  I have been somewhat public (Facebook) about it.  I've tried to stay away from too much complaining, worrying, or discussing it.  However, it's about time I find a way to mentally cope with things.  

I know that the topic of health can be a very touchy subject and many people have many different views on the etiologies and treatments of health related issues.  I've been having my symptoms since the fall of 2011 and seeing a multitude of doctors since spring of 2012.  I have been told that I'm making up my symptoms, that I brought them on by focusing on them or being overweight or eating something specific or not eating something specific, that I'm not trying hard enough on tests resulting in false abnormal results, etc.  Some people in my life believe that all medical professionals are money grubbing liars who create illnesses in order to profit.  Some people in my life believe that anyone with a holistic approach to treating illnesses must be an out of touch hippie.  I have heard it all and everything in between.  

I personally believe that there is a happy medium.  I believe that there are helpful aspects of both extremes.  I believe that mixing aspects of western medicine with a holistic attitude is one's best bet to healing or treating an illness.  I am open to advice and thoughts from the entire spectrum; but my main point in bringing this up is to try and prevent any fighting, arguments, or contention.  On this blog and/or when in contact with me about any of my health related things, please keep that in mind.  Let's just all get along.  :)