Updately-do TWO

I’ve only been back to juicing for a couple of days now.  And honestly, not even fibbing at all here, my skin has improved.  It was flaring up a few days ago, getting red patches, more and more blisters.  I didn’t have many options on how to deal with it, other than going back to juicing and focusing (again) on whole-food eating.  And lo and behold, a vast improvement with the itchy red patches!  I’ve had little ones here and there, but those patches are smaller than a dime, and often more around the size of a pencil eraser.  I tell ya, that makes life much easier – especially when you don’t have a huge continent sized patch living right around your braline or something lol.  I can’t tell ya how much it burns, and the weirdest thing is, it hurts most in bed of all places.  When I turn around and it rubs my entire body – youch!

Anyway, so I could do way better on cutting out the artificial things – like candy.  I tell ya, it’s the pregnancy – which OF COURSE doesn’t mean I have to give in to my urges, but they sure are calling to me on a daily basis.

So, another new thing to tell you about.  Y’know GROUPON, right?  If not, sign up to your city – GROUPON rules!!  Anyway, earlier this year I bought a GROUPON to Pole Dancing Classes.  Yes, you heard that right.  I’m sure many of you won’t find it surprising.  “Pole Fitness” is a pretty fast growing ‘sport’ – not sure what else to call it. Art?  Well, I had been putting it off for ages, obviously, but it’s about to expire (my groupon-coupon) and I didn’t want to waste it.  So, I decided to get in to my classes before I start showing – how ridiculous would that look?  Anyway, I had a GREAT time!  I was a really HARD work-out. NO. LIE.  I have a newfound respect for girls o’ the pole.  Not kidding, I know it sounds funny.  If you’ve ever been to a strip club, you know that can’t be easy – but what really got me into it was watching the girls on youtube.  Here is one of my faves, but there are hundreds of amazing pole girls who really make it an art and like an x-game almost, lol, not only does it take years of training to do some of their tricks, but it’s certainly awe inspiring!

Here’s a couple of hers to show you,

She’s only been at it 3 years!

This one, too, just to make you smile, don’t miss 1:22 – bhahaha

Dirdy Birdy – her two channels are – one shows her routines and practice, and her other shows “how-to’s”

http://www.youtube.com/user/dirdybirdy101

http://www.youtube.com/user/MissDirdyBirdy

Again, there are many amazing pole people on youtube – enjoy checking them all out!

Anyway, so I went to that class it was REALLY hard.  It didn’t at all seem “hard on baby” so I’m not worried there.  But I mean, just HANGING from that pole HURTS.  Today, I am SO. SORE.  It’s ridiculous how SORE I am.  But it’s nice.  Because it’s fun but at the same time, it’s not at all treated like a ‘joke’ – it’s sexy but it’s not oversexy because that’s nearly impossible when you’re practicing and you’re a total beginner like ME – haha.  Anyway, I’d really like to keep it up, however, it’s quite pricey.  So, not sure how I’m gonna make that happen.  But one of the girls in the class with me has only been going for 6 weeks and she’s lost 30 lbs and she’s 47!  She loves it and has fun and says she can’t believe how quickly the changes are happening for her – especially since she’s hated any form of exercise for over 20 years now – so that’s neat.  I’d love to tone up and FEEL strong.  I feel so WEAK these days.  My main form of exercise is walking/jogging/biking.  I really love those, though.  Especially with the temperature in the evenings lately.  That gets my lungs going and my legs working, and I know there are ways I could get my whole body involved, but this was fun and different and highly recommended!

Hubman surely won’t let me continue on his dime.  So, I’m gonna have to figure out SOME way to make an income so that I can continue.  I found an article from a professional pole teacher and fitness guru and she even was on American Gladiators recently (is it still called that?) – anyway, she pole danced (no, not in a strip club) throughout her pregnancy until the ninth month, where she found her weight and balance to be way off and she was falling all over the place, so she decided to stop then.  I wonder if I could even just keep it up through my 2nd trimester and then for the last tri, just do the walking and stuff.

Ugh, I was hoping to keep chatting, but my kids are running around upstairs – OUT of their beds.  SIGH!!!  Making me nuts. That’s another reason why I need this fun workout because they are making me CRAZY, those kids.  STill can’t believe I”m having another one.  Looks like other than cardio and strength training and fun-workouts, I need me some meditation too.

Sooo

I’ve been writing updates, but then saving them as drafts so I could streamline and spellcheck and all that good stuff, and then they’d never get published.  So, here I am.  Hopefully this one gets published!

I’m 10 weeks along in my pregnancy.  Amazing to believe – it’s going by so quickly, and at the same time, I miss my dapsone so much I feel like it’s all dragging on way too long.  But it’s good that we’ve got 30 weeks til baby is here because costs with the new house AND the old house are just causing the biggest crevasse in our bank account with money just spewing out to and fro.  It’s very distressing, and as you can imagine, that stress is doing WONDERS for my skin.  NOT.

Um, we’re moved into the big house and tons and tons went wrong.  I won’t even go into it but yeah, ridiculous.  We’re not completely unpacked, that’s gonna take a while, but we’re getting there.  A lot of our time was also getting the old house ready for renters.  They moved in on Tuesday night and have already reported a problem, that could cost so much money and construction, I just can’t even believe it.  It has to do with the A/C system – if we took out the a/c, then this wouldn’t be an issue at all.  Ridiculous.

And in the new house, problems with the garage door breaking and needing to be replaced, and it wasn’t even as simple as that – had to call someone to chop away concrete blah blah blah.  Then the kitchen sink busted and caused a mini-flood in the kitchen AND the lower cabinets… sigh… a few days without a kitchen sink was quite an event, but now we’re all squared away – bought a new sink, disposal, faucet…  Got quotes to get a back fence put up – CHA-CHING, man, when did things get SO expensive?  Window well covers to stop me from finding baby bunnies stuck in the window wells each day (caught many, one died, boohoo).  And my eldest started school this week, my youngest starts next week.  So I will become chauffuer woman again, but it will be nice to have some time alone to get stuff done around here without the mom-guilt haunting me at all corners to play memory, chutes and ladders, bingo, high-ho cherry-0 and uno with the kids…

My skin had calmed down.  I didn’t know if it was my body regulating to just the 20 mg of prednisone, or maybe the pregnancy somewhat “curing” me for a little while, or maybe even because I was juicing 2-3 times a day – BEFORE the move.  But after moving and all the stress, my skin was starting to act up again, pretty much an ongoing thing.  Until this morning, I had only juiced once or twice in 2.5 weeks.  The past 3 days my skin seems to be starting another FLARE and so I’ve got redness, itching, inflammation, more blisters and burning.  I don’t know what’s causing it – so I juiced again this morning and want to get in the habit of doing it AT LEAST twice-a-day, everyday.

I also finally got the results of my blood-allergy-tests back.  I came back allergic to:  baker’s yeast, brewer’s yeast, whey and pecans.  I also came back mildly allergic to ALL dairy.  TRIPLE BLAH.  I have been cutting down on the dairy, but not taking it out completely.  I haven’t taken out yeast or whey.  Whey is in everything, what the heck!  But with the new skin flare-up, I really do need to find some online support systems and get some more food ideas and new cooking ideas and just learn more about these allergies to see what I need to avoid especially, and see what substitutions I can make in my everyday cooking to support keeping those out of my daily life.  My doc doesn’t think these allergies have anything to do with my skin, but come ON, it just has to, right?

Did I already tell you?  I was kinda-sorta diagnosed with Linear IgA Bullous Dermatosis.  Or there was a bullous lupus diagnosis there, too.  He said he wanted to take another biopsy to make sure, but it’s been a couple weeks and I haven’t heard anything.  Bleh.  It’s always something, I tell ya.  You just wouldn’t even believe it.

I’ve been struggling with a bit of depression.  But I really need to cut myself some slack – I’ve got SO much going on, I really do.  I just wish I could fix it all… what I’d give to be able to just fix it all!

I’m still here!…

And still pregnant

I had my ultrasound and another appointment today.  Of course, seven weeks along is quite early for an ultrasound, but because of the health issues, they wanted to get in there and have a better estimated due date for me.  March 13th, btw.  So, the little gummy bear looked good and gummy-bear-ish and guess what?  I even got to hear the heartbeat… already! I swore it was my heartbeat, but I’ll take the ultrasound tech’s word for it.

So, since I haven’t updated here, maybe you had figured a couple things happened – bad news and I lost the baby, or decided to get an a-word.  I am hanging in there, and so is baby.  I have actually been GETTING SLEEP!!!  And that has just done wonders for my mood and my feeling of hope for this pregnancy.  I feel so much better than I did before.  The scars on my face got way worse before they got better, the scabs were pretty shocking for people to see and for a while, it was difficult for me to show my face in public as well because I felt like I had to apologize for looking so… contagious.   It was really hard there, and sometimes it still is.  Most of the scabs on my face and neck have healed, but they’ve left these white scars – I had many before, but there are hundreds now.  And the break-outs have moved down my arms now – so Ive got a lot of scarring, scabs and blisters on my arms now.  This is upsetting because it makes them painful and I’m very scared about the rash reaching my hands – because I worry it will make doing things during the day more difficult.  BUT, the past several days, the blisters have been tolerable.  The red, itchy, burning rash is like 10% of what it was before. I can’t tell you what an amazing difference this makes.

I don’t know what the improvement is about.  Maybe I’m no longer in a “flare”, or maybe my prednisone has just sort of ‘piled up’ so it’s more even in my body now.  I’m also juicing 1-2 times a day, and in that I’m using a product my physician gave me called “Nutri-gut” which is supposed to make things healthy and regular inside   and I’m certainly far from regular, BUT, I think I’m slowly getting there and that’s also making a difference.  PEOPLE – your poop is important!! And how you go is also important to know and keep track of! It tells you SO MUCH!!!

So, without further adieu, baby miracle here:

Tada!!  It’s a blob!  It’s a gummy bear!  It’s already a survivor, a miracle, a trooper.  We saw a baby, a beating heart and a lil’ yolk sac.  Quite amazing.  This is my 3rd child, and it’s even more miraculous than ever because this time in life moves so quickly.  With my firstborn just turning 7 this month, I can’t believe that it’s been 7 years… wow.  And even more since I saw HER on the screen like this, awww.

SO, here I am – updating you.  I’m here, and feeling just so much better.  Now, I don’t feel good by any means.  I’m exhausted.  Completely exhausted, and it’s terrible because the BIG MOVE is this weekend!!  And I only got four little boxes packed today – sigh!  But I’m glad to be able to be here and get through a grouping of days without crying and feeling in ruin.  Health… if you have it, you have SO. MUCH.  Really.  And right now, I don’t have it BUT I have a break, and I’m feeling really blessed for that.

Right now, juicing 1-2 times a day.  Taking lots of supplements, but they are approved and I’m going to stop a couple of them.  I’m also on progestin since my progesterone lows have been really low, and so for peace of mind I’ve been put on some to help things “stick” – but what will be, shall be.  Um, trying to eat whole and make good choices.  I feel SO much better when I do, now that I’m paying attention I notice it.  I was also told to start drinking an Ensure once per day to get in the calories and protein, that I’m not really fitting in.  But with the juicing/veggie-ing, I’m also trying to push the protein.  And the water.

So there we go – that’s my update.  I’ve got my next appt at 12 weeks, along with another ultrasound, which I’m looking forward to.

OH YEAH! I also got really wonderful news!  My friend, Kisha, is also expecting!  I knew she was going to start trying soon for her 2nd child.  And all of my friends are “done” having children for now, or struggling with infertility, so she was the only person who I thought might be soon.  So, I texted her and she laughed because she is “Late” – so she decided to stop and get a test on the way home – and she called me because she IS!  And calculating from her LMP, she is due 2 weeks after me!  Amazing!  I’m really excited about it.  WE’re gonna start walking together.

So, I’m really feeling pleased and blessed today.  Hopeful about wellness and taking charge.  Excited (but exhausted and anxious) about moving and looking forward to getting settled.  And looking forward to also settling into this pregnancy now that we’ve flushed and thrown out ay sort of thought of terminating the pregnancy.  I’m so glad I hung in there.  I remember sitting right here and feeling in the deepest depths.

It just goes to show.  Even in the darkest dark, the sun continue to rise and set… and there’s always a bend in the road.  (Ahh, Anne of Green Gables and Anne of Avonlea!)

Starting out juicing

So, I’ve been juicing for a few days now. Today is the end of day three.  However, I haven’t been “really” juicing.  I juice 2-3 times a day and still have eaten a meal each day.  I want to start the real-deal juice fast, but I didn’t really have a “meal” plan yet.  Today, I joined rebootyourlife.com and I hope to get a lot of useful information there.  I also ordered to book from amazon.com today – Yay free shipping! I ordered:

The Complete Book of Juicing     &     The Big Book of Juices

(Click the books to bring you to their amazon.com pages)

I’m slightly apprehensive about starting these fasts.  I know that I feel deep down that I need to cure myself because I’m barely making it sane day to day with the intense pain and itching.  I look a fright with all my scars, scabs and constant scratching.  I’m beyond irritable and emotional. I know it’s not good to diet when you’re pregnant, I’m not interested in losing weight.  I was to alleviate some of my extreme discomfort by trying to help my body stop be so damn inflamed and hating itself and hating ME.  But then I read something about toxins being all stirred up and released and this can possibly affect the baby?  That’s very frustrating because then I feel like my hands are tied.  Gosh, I wish I could meet someone who could really really help me one on one.

I post my status on facebook today asking if anyone knew of a great nutritionist.  I found two leads, one is supposedly a very costly guy who thinks he can cure anyone, and the other is Mr. Colorado?  So, he’s super buff on his webpage.   Sigh, where to even start. I want to talk to them, but I don’t want them to come at me for my business, but only if they truly believe they have a plan of action for ME.

I made an appt tomorrow morning for allergy testing.  I sure hope it’s not some random “meet each other hi hello” day – I need ACTION, people.  ACTION.

“Fat, Sick and Nearly Dead”

Last night was yet another horrible night.  I woke up burning. Not just burning hot, but tight, angry red rash super burning and tight around my shoulders.  I went downstairs to get my cold packs and went back to bed.  I could not bare another night of crying in front of the computer looking up devastating diseases, or calling and making my mother or best friend worried sick over me and causing yet another person to lose sleep or be stressed.  I got through the night.

Today was no better.  More blisters, moving down my arms.  More spotty, hideous red rash.  More chills. Bleh.  Hubman left early in the morning to do some repairs in the new house.  I dragged myself around here – not getting anything accomplished.  My mind being lost on my disease and feeling hopeless.  Very little patience or energy for my beautiful daughters.  I kept busy, trying to put desert together for our BBQ at my mom’s house this afternoon, as a big of a party for my Aunt.  I threw it together, it didn’t turn out so well – that’s what I get for always trying to “improve” recipes, lol.

Ended up going to the new house to check on hubman, and do a bit of cleaning myself.  The kitchen isn’t even big, but I had to stop three times and lean against the counter and cry.  I just felt terrible.  Terrible.  Here I was FINALLY moving into a larger home.  We’ve been wanting this for years now and here it was, a “short sale” – which actually takes so long and we were here.  And yet everything was annoying me, everything was wrong, everything felt bad.  I was impatient with my kids, irritated with the dog, I felt like hubman was doing everything wrong, hell, I was annoying myself.  I felt like shit.  And all because of my stupid skin.  Constantly itching, constantly burning, constantly constant.

I got nothing done.  At my mom’s house, while everyone was out chatting away with each other, my brother’s family had come up to visit, too, and usually it’s a great time – but this time, I spent hours in my mom’s bathroom, laying in her tub in a bath of oatmeal – desperately trying to get through the day without losing my mind.  I cried and cried.

By the time we got home, I didn’t leave the car.  I stayed in the car and sat in the driveway, unmoving.  Eventually I had hubman come sit with me, and I cried (what else, right) as he rubbed my back.  He told me I had to get an aword.  I cried harder.  I knew I had to.  This was no life.  This was not living.  My children had no mother.  My husband had no wife.  I had made the devastasting decision.  I would get an aword.  An abortion.  I would end a pregnancy… where the child would be loved and wanted.  It made no sense.  That was something others did, not me.  But here I was. I went inside and looked it up on the internet, watched a video on Planned Parenthood.

Randomly, my friend – I’ve known her since High School and earlier this year, she honored me by asking me to be the Godmother of her beautiful baby boy.  My godson.    I hadn’t told her what was going on.  I didn’t want to tell many people, I didn’t want their input.  But I needed hers.  I needed someone to know why I was going to be sad, depressed and maybe very lost.  She was strongly against it.  It was very difficult to hear.  She mentioned a movie that I should watch called “Fat, Sick and Nearly Dead” – she said I should fast.  Then it hit her, I can’t fast because I’m pregnant.  Then I thought… well… I’m trying to be well.  Well enough to keep this baby, well enough to be healthy.  Wouldn’t I rather risk losing this pregnancy through trying to keep it, than terimating it?  She prayed for me over the phone.  How lucky I am to have people who care about me so much.  I’m blessed in so many ways.

So, I had made the decision to go to Planned Parenthood tomorrow or something, anything.  I planned to call my dermatologist and see if anything came of my biopsies.  I already wrote an email to my OB who told me to tell her first if I decided to get an “aword”.  What a wonderful OB that takes emails, huh?  I watched that video, that said this wouldn’t be a simple pill… it was a pill, followed by another round of medication that would cause the most ‘damage”.  On the video it said to have family or a support system around, after that 2nd pill.  If I started tomorrow, that 2nd pill when I needed support, would be when hubman was out of town.  He’s leaving Wednesday morning til Monday night.  Hideous timing.

He’s been so wonderful.  So supportive and caring.  As much as he can be, anyway.  He’s done well.  But today I think the stress has just gotten to him.  Then on top of that, he fell from a retaining wall while trying to do yardwork, and twisted his ankle pretty badly.  He can hardly look at me, it hurts.  I know he’s not doing it to hurt me.  He’s probably keeping his distance so that he doesn’t hurt me.  I asked him to watch the movie with me, and he agreed.  I’m not sure, but I sensed, some worry and frustration that through my watching this meant I was not going to terminate and that meant this misery would continue.  I don’t blame him.  I know there is so much risk as time moves forward in this pregnancy.

I don’t know what’s gonna happen.  I started to blister earlier tonight, so I can only imagine that sleeping tonight is going to be very, very hard.   I want to go to Sprouts and buy a bunch of produce.  I want to hunt through the boxes as our juicer is one of the first things I packed (ha)… my plan… for tonight anyway, is to start juicing.  To try to CURE my body from the inside out.  The fear – it won’t work.  Another fear – if anyone find out I’m pregnant and juicing, they’re gonna lose it and be so mad.  Trust me, I’d never do that on normal circumstances.  It’s not enough, I know.  But all I can do to combat that is, drink and juice all day long, and add in protein through beans and nuts and seeds.

If it goes how I dream it would – it would calm my disease, nourish and give me energy, and allow me to continue to grow a healthy baby – while also supporting my family and being a present, partner and mother.  It’s reaching for the stars, wishing for another miracle.  But what else can I do?  One thing I know for sure is, this is not working, I will not stay sane, and that is no life.

And the movie?  Yeah, watch it.

2:30 Right on time

Woke up burning up.  That seems to be how my rash always starts up, feeling feverish and hot to the touch (but feeling cold chills myself)  Trying to put off taking my next prednisone dose as I took it at nearly noon yesterday so it hasnt been 24 hours – and because were hoping to do the Renaissance Festival today and I want to feel as well as I can the entire time and if I already start the prednisone now to calm my rash and go back to sleep, then it wont last well during the day and I’ll be miserable.

I’m nervous about going today.  It’s about an hour from home, it will be hot, it will be busy and uphill.  There will be so many people I’m not too worried about people noticing my rash. (Speaking of people noticing, we closed on the house yesterday, I was in this meeting room with 5 other people, no including hubman, and I felt like there was a flashing neon light about my head that said SICK! SICK! SICK!) with how crazy looking my skin is.  You can’t even really see it in the photo below as it’s so bright.  There are 20-30 blisters in that photo alone, maybe more, and in real life, my skin is SO discolored, light scars, medium skin, dark scabs – it’s alarming for people.  I see their eyes wander and they’re not being rude, it’s only natural to look.

Woke up yesterday feeling absolutely horrible.  My skin was burning tight so I called my Derm’s office as soon as they opened and luckily got in.  I knew that was a good thing as it’s not easy to get in to see him without more notice, but he’s been aware of my needing to see him.  He had no answers. He got the results of my biopsies and immunoflurescences and they didn’t point to anything specific, but certainly were not normal.  He said he did not think it was an allergy.  His exact words were, “I don’t think it’s gonna be that simple for you.”  My heart dropped, and later when he left the room, I immediately broke down into tears.  I’m so frightened… what could this mean.  Forever?  Long term affects?  Shortened life span? I’ve read way too much online, it hasn’t helped, that’s for sure.  Except for knowing that other people struggle, too.  I just wish I knew them in real life, so we can get together and have an immediate understanding of ‘how it is’ – that might help my confidence a bit.  I feel like I’m a leper.  Heck, I’m on the right medication – or at least I was…

I came downstairs to put my ice packs back into the freezer and I’ve be up for nearly 2 hours now.  Gonna go lay with my ice packs and hope they help me get a couple more hours of sleep.

I forgot my prenatal vitamin yesterday.  I feel guilty about that.  I know it’s silly to feel guilty about something so minor, but it just goes to show how this wee baby should be a priority in my mind and as of now, s/he isn’t.  Baby is a priority in my heart, and that’s the reason why I am tolerating this whole fiasco without medication, so I guess I should be easier on myself there.

I am looking forward to my ultrasound in 12 days.  I wonder if we’ll be able to see the heartbeat…

Here I am

Will I ever be beautiful again?  I’m  not looking for model/actress pretty.  I’m looking for, being just me – as I am, healthy in a way that people see me instead of my disease? Interact with me without wondering if I’m contageous (I’m not!)   Maybe some day.  Gosh, I sound so whiney – gross.  OUCH – my daughter’s kitten just bit me on my face!  And since my skin just feels so awesome these days, as you can imagine, that felt GREAT!… ahem…

So, here’s a before and after.  Oh, how I miss my happy calm skin.  And my hair… oh how I miss my hair.  Check me out now.  Hideous skin, broken off, thin scraggly hair.  Had my appointment today, and he took two more biopsies.  Now, thats 7 total and still no answer.  He did sound like we were going to be more proactive now and I’m allowed to take 20 mg of prednisone per day and 1 benedryl.  He did not say it was a safe dose.  The only safe dose is no dose, but it’s approved to keep me from going crazy.  I hope it helps a bit and makes things more tolerable.  If I could just sleep, I think that would make a huge difference in my sanity and my outlook.

So, he took two biopsies, skin scrapings and said he’d look at them today.  He told me all my other results came back inconclusive.  They certainly weren’t normal, but they didn’t point to anything either.  I don’t know what else he could need from new biopsies, but whatever.  On the pic on the right, that’s a huge bandaid on my neck.

Okay, we close on our new home today, so I’m off to get ready to sign a massive pile of paperwork.  I sure do wish I had some time to fit in a pedicure, I could use a little pampering…

I took a few body pics last night that Im thinking of posting.  They are partially nude, so I have to see how I feel about posting those.  No doubt it’s completely possible for someone I know to find this blog, but I think my need for answers and also a resource for the future for others is more important to me.  I also took my very first “belly” pic… to watch the baby grow.

Up in the middle of the night again…

Every time this happens, it becomes one of ‘those’ times.  I wake up because I feel horrible.  Burning/itching is too unbearable to stay in the comfort of my bed.  In fact, it doesn’t even symbolize comfort anymore.  Ever since stopping dapsone on the 5th of this month, very unfortunately, my mind is almost constantly on my discomfort, pain, worry, anxiety.

Can I survive an entire pregnancy of this?  And then will I even be able to breastfeed?

Can I be a good mother to my girls and a good partner for my husband when I’m frightened and irritable?

I’m so hungry, but I’m afraid of having a reaction to some unknown allergy to gluten/dairy/nuts/everything… so I just wont eat yet… (then I put it off and put it off until I’m so hungry and even more irritable).

I feel so sad.  This should be a happy time in my life.  Not one where so many moments are spent on the internet, desperately looking for this disease, looking for answers.  I’m on the phone several times a day, trying to get answers, appointments, explain for the thousandth time what I’m going through… and forgetting half of it because I’m so desperate to alleviate my current symptoms.

I know I’m not the only one who has challenges.  Many people have challenges for much longer than me.  I mean… I just… I’m not going to go through it, we all know there are worse off.  Hell, just google-image half of the skin diseases I google and it’s like “Glory Be Thank you I don’t have that!”… but then believe it or not, there’s still part of me that’s upset because at least they have a diagnosis.

There is so much fear in not knowing.  I read things online – and we all know that knowing a little too much and a little too little can be a dangerous thing.  But when I read about life-threatening diseases that since I’m undiagnosed, I fear that I’m going through even more damage that could be just devastating and no one knows.  For instance, for the past week, my stomach hurts and I get rolling chills after eating ANYTHING.  And it’s nearly immediate, and that’s frightening.

There is so many wonderful things going on in my life right now.  We’re buying a house – closing tomorrow (er, today)!  My husband and I love and like each other!  (married over 10 years, you know those feelings come and go, certainly, lol!)  My firstborn is turning 7!  And both of my daughters are vibrant, healthy, clever and sassy little people!  We are pregnant with our 3rd child.  My Godmother is visiting!  For just a few days and we’ve got a fun Saturday planned. But instead of being excited for Saturday, I’m wondering if maybe it would be best for everyone to go alone.  I want to be there, desperately, but what if I feel sick?  I don’t want the attention to be on me, I want my girls to have fun and not need to deal with me possibly needing to sit down, scratch all over, feel anxious and irritable.

I can hardly BE there, in that happy place.  I remind myself of it hourly.  ESPECIALLY during the moments when my rash and illness is tolerable… I try to shower my girls with love, patience and appreciation.  I rush to get everything done in the house I can, because who knows when that hour of feeling okay will end, so I have to take full advantage.

I know I’m not suffering the most.  But I am going to say it, I AM suffering.  If you’re out there and you can get through your day and be productive and feel okay in your skin and not constantly reminded of poor health – it is a gift.  It is a gift. 

Let’s not even GO into how crazy I look.  I broke out into at least 40 blisters under my jaw and upper neck, yesterday.  Then since I upped my dapsone from 10 to 20, many of the facial blisters have dried up, leaving large white ‘freckled’ scars.  If only 20 was doing the job at keeping all of this craziness at bay.  But none of those medications are enough to really affect my disease or comfort – so wearing clothes still burns and is desperately uncomfortable.  Just reaching this way or that, leaves me with a burning feeling.  I tense up with an “Ouch” 200 time a day it seems.  My entire body (from thighs up) is just covered in this splotchy, red, burning hives rash.  So disgusting and frustrating.  I go between the extremes of feeling so sorry for my body, wishing I could make it better for it’s sorry appearance – the undeniable evidence of its suffering, and then the other extreme of being so angry with my body that I want to just get away from myself.

I had hubman take photos of me yesterday.  I’m nearly unrecognizable, and then there’s this bone-shaking anxiety that… what if this isn’t even nearly as bad as it could get?  What if THIS… is “before”.. makes me tear up now just acknowledging the fear out loud.

OKAY – so I met my new OB yesterday.  She was pleasant.  Punctual and understanding.  She didn’t seem to have any clue about my rash, as I suppose she is a different sort of specialist.  I was happy to hear from her that it was safe for me to use Benadryl once daily.  That was big for me, and even though it doesn’t solve anything, it makes me believe no matter how scarring and difficult, I will be able to tolerate my way through the pregnancy.

Watching an Oprah rerun.  Yay, DVR.  I don’t know Oprah, of course.  Just as much as the world knows her.  But I’ve been watching her since I was about 10-11 years old.  And then I haven’t missed a day since I was 19.  Even back when I’d record it on VCR just to be able to see it later…

Even though I only know the show, the business, the NAME that is Oprah – her voice and presence are very comforting.  Like a motherly figure.  I see how she is thriving in her 50s and it reminds me, that please just let me get though this and I can have more years of thriving.  Maybe even a few years of being beautiful?  A year ago today, I was 300 lbs, and now I’m finally at the weight I was when I graduated from high school, and I can’t even enjoy it or show it off to my husband, since I’m balding, blistering, scarring, scratching my body to smithereens, clothes hurt and the idea of applying make-up burns…

I know I’ll make it through tonight, but gosh, another night of this fear, this sadness, this struggle…

Lord, I call out unto you.  Please help me.  Please let me return to health so I can more enjoy the blessings you’ve given me in this life.  I want to live this life fully, helping others – I hate that there are others out there feeling as I do – and many without the love and support I have in my life.  Please help me.  I’m ready to change in the ways that I need to, to be my best and to life fully and in service, I just need a direction, Lord.

I’m searching.  I just also need to be found.

Today wasn’t so bad

That’s really wonderful to say.  I took 20 mg of prednisone this morning, around the same time I wrote my last entry.  It worked wonders and the chills subsided and I was able to get a few hours of sleep.  I felt “great” as I went through my morning.  Of course compared to a regular, healthy day – I felt terrible, but compared to how I felt in the middle of last night, I felt like I could tolerate and get through the day.  That’s big.

Around 2pm, the rash started to flare again, so I rubbed on my beloved Tea Tree & E Anti9septic creme – and that settled down my rash a bit and took the insane edge off of the itching.  Got me through for another couple of hours.  Then around 4pm, when the blisters started to rise again, I took a Benadryl.  That definitely calmed things down, the chills, the blisters and I felt like I was definitely going to get through the day.  Thing is, what I do NOT want is to medicate too much because of my bitty growing baby.  So, I have to admit I am feeling some anxiety about tonight… another unbearable, frightening, hopeless night of insane discomfort… oh sweet Lord, I hope not.

Today, was another successful, gluten-free day.  I think my successful day is mostly due to the 20 mg of prednisone.  However, I have some hope it’s because I’m continuing on the GF diet.  I’m trying to just believe in that, and hope that positive, hopeful feeling will help me heal… help me heal.

I am pleased that I had a bit of Noosa yogurt today, with no negative reaction afterwards.  If you haven’t tried Noosa, that must happen NOW.  I’ve found it at Whole Foods and Sprouts – so try out a natural grocer and give it go.  Even if you don’t like yoghurt, I’m telling you, you’re in for a treat!  Everyone I’ve FORCED to try it (yes, that means I’ve actually shown UP at their homes to deliver it), have just fallen in love.  I also had it with a couple tablespoons of “Bakery On Main – Nutty Cranberry Maple Granola” – gluten-free of course.  It was really nice!  Has a really great crunch – crunchy without being so hard you feel like you’re gonna chip a tooth.  Check it out!

Ok!  So, we’re having majorly crazy thunderstorms here in Colorado tonight, so I went upstairs to check on the girls.  While up there, I peeked in on my hard-workin’ hubman, always typing away on the computer upstairs.  And I saw the voicemail flashing away.  I listened to the messages and I got a call back from the Allergy Specialist at my Doc Clinic!  She said that Dapsone CAN indeed help food allergies other than wheat allergy, so it would be beneficial for me to move forward with the blood allergy testing afterall.  I’m glad about this!  Part of me is scared, but I’m still glad.  I’m a little nervous about my response.  Because I’ve noticed a few strange things since I’ve been off the dapsone.  I made Indian Rice Pudding on Monday to bring to dinner at my friend’s house.  I also brought a little container of pistachios.  As I chopped them on her counter, my throat felt prickly and I coughed a few times.  That has NEVER happened!  Goodness, please don’t let me be one of those people who eat only chicken and raw veggies for the rest of my life! I’m sure they have way majorly healthy diets, but man.. that’s too much for the Ol’ Cole!

So, you may hear from me again tonight, if I have another desperate lonely wake-up-at-2am night,  but if things go like I sincerely hope… you won’t!

Hello world

So… you’re here.  Hello there   You might not stick around, but then again, you might.  I don’t mind if anyone sticks around, this is a place for me to have to put my feelings out there because right now, it looks like I’ll be awake and alone at night, for many nights to come.

First things first, let me just tell you a little bit about myself – just in case I do get a reader or two…

I am Coley.  29 years old.

Married to Hubman for 10 years.

Mama to Bee and Lala (nicknames, of course), for 7 and 4 years.

I have baby number three growing inside of me now.

I am 5 weeks pregnant.

And I am sick.

I’m not sure what I’m sick with.  No one seems to be.

It all started around October of last year with a big, bulbous blister on my right temple.  Strange!  Little did I know, a LOT was about to change.  Since then, my body has been invaded with a rash.  I saw my doctor about it, who took a few biopsies, put me on some prednisone and referred me to a dermatologist.  One of the best in my state!  Surely SHE would have the answers!  Fast forward a few months, she has no answers.  But she ups my Prednisone to 70 mg.  I can’t tell you how wonderful it makes me feel.  My rash heals up, my burning blisters and sores, scab up and eventually heal.  They leave white scars all over me, but months later, they start to fade.  I am brown skinned, btw, so white scars were very obvious. Dermatologist, takes more biopsies and still having no answer, she starts me on a medication called Dapsone, and refers me to another Dermatologist.  He slowly tapers me off of the prednisone, and even lowers my Dapsone.  This is tough.  I was enjoying having clear skin, not having all the horrible symptoms that my unnamed disease brought me.  But it’s not like I was cured, the medications were not safe to stay on long term – especially not the Prednisone.  Did I also mention, I’ve lost over half my hair.  It’s quite a sight.  So even though it wasn’t curing me, it was making going day to day tolerable.  I was able to care for my children.  I was able to laugh with my husband.  I had the nagging “what is WRONG with me, I’m going bald… I wish we could figure this out” but my life continued on.

This is me below, dancing with Dapsone… even though I didn’t want to be on it.  I loved it.  I love it still.  It’s upstairs in a bottle and Ican’t tell you how much I want it. 

My new Dermatologist wanted to taper me off the prednisone and the dapsone so that he can get me to flare up a bit and take another couple of biopsies.  However, after I’d go down a few mg, I’d flare for a few days and then I’d adjust.  A month ago, I was at a place where I was on 100 mg of dapsone and 0 prednisone.  I was waking up and getting around 2-8 blisters on my face per day.  It wasn’t pretty, it was very frustrating actually… but gosh, that’s child’s play compared to now.

I found out on July 3rd, that we are pregnant with our 3rd child.  My heart began to race and immediately, the fear of telling hubman set in.  It was hard.  I knew he wouldn’t be happy.  He already works constantly as it is, I couldn’t bear to lose even more time with him.  The timing was rotten.  We are closing on a house THIS WEEK, and in the process of getting our own current home rented out.  Then on top of all that… I’m sick.  And we dont know with what.  After a few days of quietly getting used to the idea, we do fear my health condition but I decide that I can not bear to get an abortion – from now on, we’ll use the “a-word” because this is my blog, and my thoughts and what I’m comfortable with.  I am pro-choice, but this was not a choice for ME.  I continue my medication, until Tuesday when I call my docs and leave them all messages letting them know the deal.  Eventually, SLOWLY, they get back to me with the same,

“Stop the Dapsone”

And so I stop.  And my body.  goes. HAYWIRE.

My rash is outta control.  I get rolling chills.  They last and last and last – they roll in constantly like waves hitting the shore.  Blisters “bloom” from my skin, like crazy.  In a given day, I surely get 100-200.  Maybe even more if you count the teensy tiny ones.  Not only the blisters, but I’m also covered in a rash that is angry red, patchy and very painful.  Just rolling over in bed causes an extreme burning sensation.  Just thinking about it has me tearing up.

Everytime I need to talk to a doctor, I have to leave a message and wait and wait for a call back.  I feel so neglected and alone.  And miserable.  I feel desperately guilty that I’m not the active, involved mother I should be to my children that are HERE.  I feel like a useless wife, even though I fight and pull together every ounce of energy to make dinner or tidy here and there.

I don’t look like myself.  My skin is so angry, scarred, blistered and enflamed that I feel like I look like a monster.  I feel like people are scared of me when they see me and I’m embarassed.   But that’s not the worst part.  Beacuse of this skin crawling horrendous feeling, the ITCH is out of this WORLD.  I can’t even explain to you the intensity of it.

I’ve been tested for gluten allergy before, and they have come back negative.  However, I don’t know how else to relieve this and I feel like I’m going CRAZY on a daily basis and especially at night.  The deep feeling of loneliness ad hopelessness takes over.  Just this night, I called my best friend at 2:30 am.  I would never usually do that.  Ive been keeping the news from her because I’m so early in my pregnancy and also because I wanted to tell her face to face.  My beautiful friend has been struggling for years with infertility.  And now here I am, with an unplanned pregnancy and considering termation – yes, the aword.  Something I DO NOT want with any fiber in my being, I consider daily just to escape the Hell that my body feels.  And to be a funtioning mother and wife again…

Anyway, that was a lot of talking and that’s just a summary.  My plan is …

to get through today.

To continue on a gluten free diet.

Did I mention last night I did a bad thing and looked up online how long it would take for Dermatitis Herpeformis (the Celiac rash) to go away, heal… and people have said anywhere from 1-4 YEARS!!!!!  I swear, I couldnt survive how intense it is right now for another WEEK let alone months.  I long for my beloved Dapsone upstairs to relieve my symptoms WHILE those months pass and I practice my gluten-free diet.  But I dont even know if it is gluten for sure.. but I have no other place to turn.

I called an allergist yesterday and she said she couldnt do the skin allergy test.  So, I will schedule a time to self pay for more blood tests.  I was shocked, appalled and irritated to find with ALL the gallons of blood I’ve had taken for the past year that no one did allergy testing! WTF!!!

Anyway, that’s my intro.  I highly doubt anyone’s got through it all, but just in case someone wnats a background at any point, this is one.

As of this moment, “Its just me and you, kid” – baby and me are in this together.  I don’t want to terminate.  I am a loving, willing mother – our family is capable financially to care for another child.  But my body is so broken… and I’m suffering within it.