Happy Mother's Day!

Uggghhhh... All the Kings Horses and all the - you get the idea!

Can anything else go wrong with me!!!! NOW!, I have sinusitis and most probably strep-throat. I just feel like a Mac truck will be along any minute to end it all. If I am not scratching my head, back, leg, [stuff] - yea, I got a flare there too! At least it is a strong probability. I had a biopsy taken Monday - yep!, they took a chunk or at least a bit out of my [stuff]. On my way out, I stopped the nurse: "How bad is it going to feel when the local wears off?" "Oh, not bad at all... you'll just know that something was done there." YEEEEAAAAAA! riiiight! If I didn't like the ITCH before... NOW IT BURNS! Ha! Oh, yea, went to my eye doc to see why my eye was hurting (felt like I had an extra eye-ball in there!) and why my vision in that eye was all blurry. Turns out - I was at the WRONG doc's office! That's when I found out about the sinusitis - from my eye doc! Talk about feeling stupid with a CAP 'P'. It very quickly moved to my throat - thereby giving me the possibility of strep or even tonsilitis! yea, 40 y/o and still have those problem makers!

So, I am trying to get to my PCP this week (pray for the SQUEEZE in for me!). When I do get there I have a HOST of 'shine-ola' to go over with her. The pain in my shoulder, back and knee... derm said to ask my PCP first before giving it the 'psoriatic arthritis' name. Great! In the mean time, I can use but only half my friggin' limbs!

Man! And being vegan through all this - THAT is a whole different set of FIREY RED HOOPS I need to maneuver. Currently the treatment I have for the pso is all external... and I read ALL ingredients. Save the fact that each pharm company (now up to 4) has labs that test.... well, you get the idea. At some point, I just cannot avoid certain unsavory things as a vegan. For Pete's sake, I am not suicidal! Nor am I stupid or a masochist. I don't want this disease NOW or later or EVER... the best I can do is my best. I cannot control anyone's ignorance, heartlessness, or otherwise inhumane behavior. But I digress.....

Being vegan and trying to deal with the upper respiratory infections - THAT is a trick. Most if not ALL antibiotics are laced with some form of cow milk product. Uggghhhhh! I've tried that before.... pill came back up with in minutes. There is, though, another option: getting an injection. I am not afraid of needles... just WHAT'S in the thing behind the needle. The upside to this option: it can not come 'back up'. Sooooooo, I wait for that 'squeeze in' appointment with my doc (who, btw, has bent over backwards for me as a vegan and she is wonderful about it!). Pray that she can come up with a solution for me that is minimally invasive and put me back together! Feeling like Humpty Dumpty! lol

In the mean time... I will probably not be blogging very much as I really need to get this illness behind me. Classes start on May 17th. And if she (my doc) decides it's time to put the 40 y/o tonsils out of their misery - I'll need time to recover before school starts! Not that I talk a lot - I don't. But heaven knows... I AIN'T EATING JELLO!! I prefer the awesome ice cream from God Himself: made of coconut milk!

Any-who.... I am off here! Ta-ta my friends!

In His Gracious Grip,

Me

Does IT know... I mean REALLY!!

Well, today is a blah day. I've been 'treating' since Friday... it's time consuming and it seems that I need to be an acrobat! The places I need to stretch to and reach! Seriously! I am tired - not from pso, or maybe it is... all I know is that the physical exertion from doing what is necessary is wiping me out! Add to that that it seems this THING knows! IT knows that I am fighting it and it is attacking me in other ways.... I have been in a lot of pain lately. My shoulder has been so sore for about a month (since before my dx). My ankle, my knee and my back are getting there too! Oh, and lets not forget the flares that have come up since I started treating! WOW! Does this stuff have eyes and ears to KNOW that I am trying to rid my body of it??!??

I just want this under SOME kind of control before I start school. I don't want to start school and have like a zillion doctor appointments to go to during my first week of classes! Is that too much to ask?? Just some down time for me to acclimate to my new schedule of being a student again.

And speaking of school: I have received my acceptance letter from DTCC! YAYYY! My FASFA, is well on it's way to being complete... just waiting on award letter from them now. I have my New Student Orientation Session on April 22. That's when I will see my advisor and pick my classes and such. I am sooo anxious to get started. Last week, I made myself a whole nuisance as I was trying to push things along for myself - something that some folks say is a good thing. Others, the people I kept after, not so much! Ha Ha! Well, this is the life and actions of an adult student. I am not a teenager fresh out of high school. I have more anxiety than the entire senior class of every local high school *combined*. Not only will I be nearly the oldest student in class, but I could quite possibly have a very visible, uncontainable pso problem when I start. That makes me anxious and uncomfortable to think about.

Anyhow, trying to lay this all at the cross. Along with all this going on, I am still the parent (a single one at that!) of a 16 y/o girl. Scratch that! A young woman! AAAAHHHHHH!! Yea, I will be pulling things together to go prom shopping soon: YESTERDAY! I guess I should be happy with this one: he's WAAAAYYY better than the last one and I am more comfortable now than with the first one! (Dr. Jekyll, if you're reading this: DO NOT LET YOUR HEAD SWELL!! Szchuk: if you're reading this: DO NOT GET ANY IDEAS!!).

So, this is my list of jobs lately:

• Child of God
• Prayer partner
• Mother of 16 y/o
• Student
• Friend
• Daughter
• Pso survivor

Wheewww! I am tired just at the end of the written list! lol. Oh yea I almost forgot: I am vegan too! What does that mean? Well, everything I eat is made from scratch mostly because I am an Organic Vegan. If its got more that 3-5 ingredients in it, I leave it! I'd rather make my own! And that's not just for me, my girl is an Organic Omnivore. So I really spend a lot of time in the kitchen. With the pso attacking my joints now, that is a chore!

Made lasagna the other day... uuuggghhh! When it was done, I had a small piece and just about fell over with exhaustion. Last night I threw together some stuff to make tofu steaks... Y U M M Y!! I try to remember what I put in things so I can develop recipes. Hopefully THAT one I'll remember. I will post my recipe for Vegan Lasagna on here... maybe later tonight??? And I will jot down what I did last night for the steaks for a recipe on that.

Well, I got an eye doctor appt this afternoon, so I'd better get going. The process to get myself ready to be out in public now takes longer....maybe I'll make it to the appointment a little early!?

Will bring paper/pen to write out recipes to share! Thanks for reading and letting me ramble!

In His Gracious Grip,

Me

Jesus Is my Strength!

Well, today I wake up feeling a bit better. My shoulder not as pained as yesterday. I am trusting FULLY in God to give me strength today. I want Jesus to run my life - not this disease. I know He can ease the pain and the uncomfortableness that this has burdened me with. I press on to the mark He has set before me.
I will clean up, cream up and off I go! Lots to do today - I don't have time to sit and have coffee with anyone called psoriasis! I have an appointment with Jesus and His plan for me!
This dx is going to bring about a vengeance in me to press on; to "run the race".
A long time ago, while facing a crisis in my life, I was given this Word from a woman who didn't know me but saw my pain: Psalm 91. It talks about the Lord being "my refuge and my fortress"
There are some very real promises in this Psalm. And He tells me, because I love Him and believe in Him, He will be with [me] in trouble and deliver [me]. So here I go: doing what God has set before me to do; being the best ME I can be today; not worrying about what man things of me. I am RUNNING THE RACE "in such a way as to get the prize"!
So, get out of my way world - here I come (itching and scratching as I may be) with a vengeance to conquer what ails me!

In His Gracious Grip,
Me!

The routine begins...

Ok, so I finally started my treatment today! Geezzzz, I am exhausted! It takes soooo much longer to do simple things like shower and dress! Coupled with the fact that I haven't been able to move my right arm much for the last 3 weeks... made 'application' quite difficult. [Thank You, Szchuk!] Had to have help doing everything: head, back, and arms. Then came the fun of doing my head AGAIN after my hair dried! Lovely! I know there are people out there that have been doing this for YEARS! But I just found out what all this crap is on Thursday.... it is hard to acclimate this new thing in my life - knowing that it will be like this ALWAYS. And now that I know what it is...I get exasperated when 'something' new flares up. It just is plain frustrating!! Hey! I get to do my face tonight! Yayyyy! Sorry for the sarcasm, but I am still trying to wrap my brain around all this... and keep some semblance of sanity to me.
I know I need to trudge on in life...but after waking this morning and not being able to move even out of bed...I am not anticipating going out into the world tomorrow: regular things like bank, PO, school, stores. I feel like EVERYONE will notice (though I do have ways to contain all this). That's another thing! I can't even wear my hat anymore... AHHHH! That was how I contained the WORST of this - my hat! :(( I just feel like everyone will be staring at me and will be disgusted by me. uggghhhh... maybe I should carry a BIG STICK! lol. Seems like I'll already be carrying a Scarlet Letter on my chest. How does one deal with the stares and disgusted looks??? Do I go out of my way to explain, or just suck it up and ignore the ignorance?
Well, I am done rambling for the day... 'Hasta!

IHGG,
Me

Some things are just hard to absorb...

I am having such a difficult time with this! I can't seem to wrap my head around this. I haven't started any treatments... though I've had them since Thursday night. It even seems unreasonable to my own mind:
All I want is for this to be over... right? Well, they why haven't I started treatment??? Why!???! I'll tell you why... because no matter what treatment I use, how long I use it, how often I use it, when I even start it... THIS WILL NEVER BE OVER!! I guess in my feeble mind I think that since there is not cure: "what the heck! why even bother!!" I just have to get passed this little pot-hole. My friend* told me that I have to go through a "grieving" period. I guess that is where I am at. I do kind of feel like part of me died. I REALLY don't want this to RUN or RUIN my life. I just wish I could bypass this current 'period' and get to it. But something is stopping me - not sure what it is though. A little bit of self pity I suppose. A whole lot of anger, disappointment, shame... you name it! Maybe there is a thought that as long as I don't start treatment, then it won't be REAL. Craaapppp!!! This just isn't fair!! I remember in my early 20's people used to tell me I had such beautiful skin.. HA! I have been wondering for the past 10 years, what happened to that beautiful skin. It's all splotchy now... red marks, lesions, unhealed dots all over - legs - arms - neck - face - back ----EVERYWHERE!! Then there is the head... oohhhhh let's not get started with that! "Oh, you have the MOST gorgeous hair!!! I wish mine was like yours... can I brush/play with it??? It's just so nice and full and shiny!" Well! How do I look now? I hate my hair now... it won't stop falling out, my head is full of this crap! More often than not, I wear a hat to cover up my problem.

Awww, crap! I guess, I just need to stop feeling sorry for myself! Kinda hard to do that. I am just not motivated to start treatment as it 1 - makes all this REAL for me; and 2 - seems to take up so much time and energy, just to walk out the door in the morning.

If anyone is reading this and understands or has been where I am at.... please leave a comment about how you got through the initial shock of your dx and what brought you to motivation of healing. Thanks everyone for listening to me ramble~

IHGG,
Me

WOW! This can't be real!

Well, Thursday I went to see Dr. Jeffrey W. Scales at NC Center for Dermatology. My thinking when my PCP gave me the referral: "Well, finally I can find out what this is--he'll give me special cream/ointment and shampoo and it will be over in a few weeks!" See the itching head has been around for 10+ yrs, the weird,scaly on my leg at least a year and the general itching all over the rest of me - seems like forever. We (my PCP and I) talked about allergy testing. That was a foreboding thought for me being Vegan and all: my diet is soy-based (#2 of the top 10 known allergens). But after a rather frustrating scratch-attack on my own head; when I finally was able to free up my hands to dial, I called doctor dermatology.

the visit

First the verbal exam with the nurse: yada, yada, yada..."yea I itch here, here, here and.... HERE! Ok, look at this and this. There are the things I've been using..." *shows shampoo and latest Rx cream from PCP to nurse* "... these are other things I've done..." *explains holistic things I've done as well as the 'firey-hoops' I've been jumping through to nurse*

"OK, undress and put [our fine comfy robe] on," she says.

The Dr. enter: ok, all over again I explain things (nurse helps, tho! Yayy!! I am busy trying not to scratch everywhere). He looks over my leg, then says: "Point to where it itches on your head." HA! -- I take both hands and plant them on my head the way one would during a "free throw" in B-ball. He chuckles and says, "OK". He moves about 3 strands of hair... yep! you guessed it: a major scratch-attack ensues! So, he's thinking maybe um eczema then Ms. Nurse clears her throat and says to me: "Show him your elbow." Oh yea - I usually forget about it: I'd always just figured it was hardened skin due to pressure (being on this machine alot, I always lean on that arm) and thought it only itched because of the area it was. Up till now, Doc was talking about taking a bite of my buttock and thigh for another biopsy....

the verdict

"Oh, forget the biopsy, it is definitely psoriasis", he says. Me, in my naive mind thought: "Great, a name to my itch! So it WILL be over soon... some special cream, some special shampoo and voila`, it will be over: FINALLY!!: He writes me the 4 Rx, she gives me 2 pamphlets and I am on my way. I was SO excited!! It's got a name (one I even heard before) and a solution! Yes! So, I hop on the next bus to my next destination. That's when it happened -- that's when someone picked up the Louisville Slugger of REALITY and clocked me up-side the head: things like "lifelong skin disease" and "no one knows for sure [what causes it]" and "it is genetic" and "not yet [a cure for it]" were jumping off the pages screaming in my face!!! Then the final blow - you know when the better Heavy-weight draws back that last time to effect a TKO with his secret swing and his lesser opponent tumbles to the mat unconscious: "REMISSION"

What the... ?????!!!! That is a cancer word!! Why are they hitting me with this just for some itchy head & leg (and back and chest and arms and face and feet and hands, and, and, and, and...) Ohhhh! No, wait! This is wrong. I was supposed to NEVER have some incurable disease!! But these people don't understand!: I have PLANS!!!

river of denial

"Oh this other pamphlet -- that's what they meant for me to read! Yea "adult acne", that's what this is: it's also called psoriasis, right? Yea - it isn't as bad as that organization is making it to be!" I had forgotten there were 4 not 1 or 2 Rx that doctor gave me - it was put away.

Errands done, I was on my way home when I starting swimming in ...

the sea of sadness.

I was beat! My life was ruined! I will never do what I really want! I certainly will be single for the rest of my life - according to the pics in that literature I read. I just felt so defeated by life! So wronged! The the

anchor of anger:

Why me! So many other things in my life lterally "passed me by"; why not this too? This is just crazy! Then, there's the fact that I don't even KNOW where this comes from. [This is more personal -- maybe I'll blog about it later.*]

So, home: had an appointment* within 15 min of being home. Talked with a friend* about it all (my 16 yr old is not really in-tune with a 40 y/o woman just dx with psoriasis). Got all [*] about it, then decided that it was my fate... I guess. After the appointment, I walked to the pharmacy (a 10 min walk along the RR tracks) with my daughter. We talked about everything BUT THIS - I just wanted it to be OVER! The pharmacy had all the things, it just took a while to fill as it's a 1st come 1st served kind of thing. So when things were ready, I realized that my CC was in the zippered pocked of my bag ------> AT HOME! "Geeezzzz, when is this day going to be OVER?!?" Walking, walking, walking -- climbing stairs -- down the stairs -- walking, walking, walking - back at CVS: waiting, waiting, waiting AGAIN. Walking walking (visions of my appearance scaring the children in my classroom as I try to teach) walking home again. Finally at home I realize that I am sooo completely tired and exhausted that I go to bed 2 hrs early = 10:30pm.

When I wake up on Friday, I realize that : NO, IT'S NOT OVER!!! I look in the bag, with more wits about me than last night: (from top to bottom)

1. Clōbex® Shampoo {clobetasol propionate}
2. Clōbex® Lotion { same as above }
3. Epiduo™ {adapalene and benzoyl peroxide}
4. Taclonex® {calcipotriene and betamethasone dipropionate}

Try and pronounce those!

I remember the pamphlet: it's from NPF (National Psoriasis Foundation). I go to the site, surf around a bit. Go back to FarmVille, check email, answer email, Farm' again --- bored!! Back to NPF site I register, seek a mentor and sign up with the VH BioBank (click on BioBank in organge box at NPF site - if you can, and have it... please donate to the research for a cure!) I vaguely remember telling a friend: "This WILL NOT run my life!!!" But do I really believe it?? I try to believe it. I'm a fan of NPF VH BioBank on FB now. I'm registered on talkpsoriasis.org and posted my intro. Hey!! A mentor called me!! Her name is Fran (from NY). Got into a fight with a good friend last night while on the cuff of being depressed about all this -- I feel bad about that.

Today: I am not sure if I have the energy to go on this journey. It seems like so much work - just to exist in daily life situations! I've read that some people go into remission (bleehhhhh! don't like that word!!) only to flare up just DAYS later. Then there are medicines that just stop working, and trying not to get peeved when people stare or are ignorant and rude. Ugh, I don't like being dependent on medicines to live day to day. But more than that -- what happens when this pso' doesn't want to cooperate with the treatment I'm using? Do I just become a number and guinea-pig for a new drug or treatment??? Are my days going to consist of trying not to ache, hurt and itch? It's already gotten hold of 2 of my joints - and IT HURTS!!!

Some moments, since Thursday, I feel like I've 'failed' myself - other moments: like some other person "infected" me with this!! Weird, I know - it's genetic, not contagious.

My Lighthouse in the Storm

Right now, I am discouraged. But somewhere, deep inside I know that my God hasn't brought me this far to leave me now. It's just hard to stick with that thought when I itch and hurt and still hear those screams: NO CURE, REMISSION, NO ONE KNOWS. In reality, some ONE does know: God knows -- and in my brain (18 inches away from my heart), I know that He did this for a reason and mine is not to know why; but just to wait on His actions and go with Him. I am learning that this diagnosis is just another 10,000 steps of my walk with God and it is just the beginning of a new journey He is carrying me through. For His Glory, I was healed of Migraine Disease... so shall this plan will be played out FOR HIS GLORY!