5 mg. and counting!

So... I've been down to 5 mg. of prednsione for the past 3 days!  I know... those people that have been following my story can let out a "AMEN!" or a "WHOPPEE!"  Whatever you prefer.  This is a time to celebrate!  Come September 4 I will have been on prednsione for 2 years... and this week marks "uncharted territory" as my husband referred to it.  I have never been able to go this low!  So far it has been "okay."  I have a few, minor withdrawal symptoms, but hey... I'm still able to function and do stuff!

Everything in my blood tests is looking fairly good at the moment.  I have two things, my creatin k and my crp, that are still not "normal" but they're miles away from the point i started at, and both are slowly lowering. So if all goes well in August I will be able to go down to 2.5 mg. of prednisone and in September 0!!!!  Its crazy to think about that!  The only thing that could prevent me from going completely off prednisone is the fact that your adrenal gland naturally makes 5 mg. of prednisone... well being on prednisone shuts down your adrenal gland.  So right now we're slowly "waking" up my adrenal gland.  There is a chance that it might not wake up, so I would have to be on 5 mg. prednisone the rest of my life, which is not necessarily uncommon.

I continue to "run" in the neighborhood pool and try to do more activities.  The humidity has a major impact currently on my breathing condition, but I do what I can, which is more than what went on about a year ago.  I'm thankful for good days and even my "bad" days right now... as my "bad" days are NOTHING compared to what they were even 6 months ago.  I am a HUGE advocate for the drug Rituxin...without it I do not know where I would be right now.  Everyday, my husband and I are thankful for my Rheumatologist... she has been my advocate since day one.  Never once did she think we weren't going to be able to control this.

So... I'll leave you with a little "precious" story that has made me get by this week with a big smile on my face.  My sister-in-law, Kelly, told me that my little Kiki was in church writing notes aka mountains.  When asked what she wrote, she said, "I love Aunt Maggie."  Supposedly its in the mail for me, and I know its something I will treasure always.  It's little moments like this that motivate me to get better.  I have to be able to be energetic for her.  Come November, she is counting on me riding Dumbo with her at Disney World... and believe me, she won't let me forget that! :)  I always find it funny how God provides motivation in your life!

Hope everyone has a wonderful weekend... I know I will! :)

High anxiety, ends with a sigh of relief!

So... I went and saw my rheumatologist yesterday.  It was the first time I had gone a month without her.  I was really anxious about seeing her.  I've been doing fairly well on 7.5 mg. of prednisone and she would be giving me the go ahead if I could go lower.  Every time I have a doctor's appt. or get blood tests I get really anxious... I just don't want to go back up on prednisone right now.  I know its realistic to think that I will some day have to go back up on prednsione... I would just like a little break for awhile.

With that being said, things seem to going in the right direction still.  Am I the same energetic, hyperactive person I was before this?  No, but I feel that each day is a step towards recovery and although its annoying... baby steps are the key.  I still have bad days, where I need to sleep and yes I still turn as blue as a smurf when I get cold or stressed out.  But it lookes like my joints are doing well and all my levels are for the most part normal.  My creatin k isn't, but that is not too alarming right now.  So... I right now I sit and wait for the phone call.  The phone call to give me the okay to go down to 5 mg. of prednisone.  This is the lowest I have been in two years.  I've very excited about this news.  So heres hoping!

I don't have to go back to the doctor until September.  So I get another break this August and just have to have my blood tests.  If all goes well in August I will be able to go down to 2.5 mg. of prednisone.  In September they will test my adrenal gland to see if it's "waking up" as being on prednisone shuts it off.  Hopefully it'll all go well, because if it doesn't wake up I'll have to be on 5 mg. of prednisone the rest of my life.  I know a lot of people do this, but hey... any less pills I can take the better! :)

So that's the doctor update! :)  Of to make Bethenny Frankel's "healthy" mac and cheese! :)  Have a great night!

My two favorite nieces!

Just thought I'd share this cute pic that my sister-in-law took while we were all back in Iowa!  Love my little nieces!

Iowa Girls

So... I'm a person where my attitude can be changed for quickly for the good or bad. Like a rollercoaster. Anyways, songs tend to help me stay positive and upbeat. My favorite right now Katy Perry's "California Gurls." I mean come on, "I'll melt your popsicle?!?!?" Who thinks of that?!? Plus, I'm a huge Snoop dog fan... I mean my childhood cat is named Snoop Kitty Cat! Anyways, I found this on you tube and had to share its a spoof of Katy Perry's song! Hilarious! :) Enjoy!

 

Breathe In, Breathe Out

Breathing in and breathing out... something so simple to so many people.  Unfortunately for me in the past two years it has been quite a struggle.  Most times when I take a deep breath, or even something as simple as yawn, I start wheezing and coughing.  Well good news is that I am mostly past this feeling due to the new drug regimen I am on.

Today was my lung appointment check-up and kind of dictated whether my pulmonologist thought that drug had stopped the progression of my lung disease.  We haven't been able to tell due to the fact that I was on such high doses of prednisone that was masking any symptoms of my lung disease.  Fortunately it looks like the drug is doing the trick and has stopped the progression of my lung disease.  My pulmonary function test although it didn't get better, it didn't get worse which is great news since I'm so far low on prednisone.  Pretty much in the end, we think that my lungs will not get worse, but hopefully my breathing will get better.  Although we are not sure due to the fact that we don't know for certain yet if my scarring on my lungs can be reversed.  I'm fairly positive that I will gain my breathing volume.  So that's the good news for now.  I go in for another CT scan in August/September and after my appointment I treated myself to an iced vanilla latte and Bethenny Frankel's Skinny Dish cookbook... I'll let you know how it is! 

Oh... and I lost 5 more pounds since going to 7.5 mg. of prednisone 3 weeks ago...

Highs and lows... and a few breakdowns

Life has been kind of crazy lately.  Chris and I just spent the past week in Iowa visiting my family for the fourth of July and cheering my dad on with the John Deere Classic.  It was a great time to spend with family.  Although it wasn't relaxing due to the two toddlers running around, they provided much of the entertainment.  Although the trip was enjoyable, it was meant with much anxiety and emotion.

The past month has been really hard on me emotionally.  Everyone keeps saying "baby steps" the weight will come off, etc. but no one knows how hard it is unless they walk in your shoes.  Imagine every morning looking into the mirror for two years and not knowing the face you're looking back at due to the fact that it is so bloated of fluid.  Imagine being twenty-five and not able to wear a two piece ever again due to the striae scars on my stomach, or paranoid about your scars on your arms and making sure that shirts are long enough to cover them.  This are only some of the things that have become my daily life.  With all of this insecurity about my looks, you can imagine my anxiety about going home and seeing people that I haven't seen since our wedding.  I honestly did not want to go home.  But in my heart of hearts I know I would regret not going to see my nieces and supporting my dad at the golf pro-am.

In the end I'm glad I went.  I braved seeing people, had a few pep talks from some people, and got over the anxiety.  I've learned that if put on a smile and show people that although I don't look like me, but I am still the same old me, my balloon face doesn't seem to be that much of an issue.  Although people commented about how they were thinking about me and praying for me, they still treated me like me.  Which was nice.  I have hated being treated different or the worst is when people take the "baby" tone with me!  So frustrating.  The one thing that I have stated to my family and friends, is don't feel sorry for me.  Its okay to be frustrated with me, but I never want the sympathy card or guilt trip.

Anyways, through this process I will be quite honest.  There is only one person that has really seen me cry and it has only been about 4-5 times and that is my husband.  Most of these times was due to pain, not my situation.  I feel that I have buried the frustration of what I look like and what my life has become.  Well... during the fourth I finally had a breakdown with my mom.  I hate crying and I hate feeling sorry for myself.  But in the end, I'm so glad that I had that breakdown with my mom.  It felt like I was five years old again and scraped my knee and Mom was there to make it better.

I realized at this moment how depressed I had become.  Instead of rejoicing about the fact that I was down to 7.5 mg. of prednisone, I was paranoid and said well... my muscle enzymes are up so I'll probably just go back up again.  I realized that I started to look at the glass half empty instead of half full.  I know that I am totally entitled to feel this way sometimes, just as long as I don't stay that way.  That's one thing that my mom told me... its okay to let it out.  Once I did, I felt a little better.  I realized that part of the reason I stopped blogging so much is due to the fact that I didn't have anything nice to say and I come from the rule of, "If you don't have anything nice to say, then don't say anything at all."  But why did I create this blog... to give people an idea of what living with a chronic illness is like and to possibly connect with people that might be going through the same thing.

Its crazy how life has changed for me, some for the good, some for the worse.  I haven't quite figured out what God's plan for me is right now, but I know I'll see the light at the end of the tunnel in the near future.

I have a lung appointment tomorrow.  I'm quite anxious for it, but hey... we'll know if the drug is working on my lungs or not.  Good or bad, I'll at least have an answer tomorrow.

Sorry for the vent session.  I'll end on a positive note with some pictures from this past week.  Cheers!

Mia Reece... 16 months old.

Keegan Lee... 3 years old

Keegan and Aunt Maggie

My dad (aka Papa) and the girls before the Big Dig

My mom (aka Gaga) and Keegan

The girls riding "Papa's tractor"

Chris and I (my face has deflated some)

Me and my kitty Snoopy... 16 years old and not doing so hot :(

Hanging in there.

So I've been down to 7.5 mg. of prednisone for about a week now and I'm slowly feeling a little better day by day, although I still have some slight muscle soreness.  I hope this goes away soon as I get to see my little nieces soon.  Anyways, each day is a challenge trying to get stuff done but still not wearing myself out.  I was able to make it to the pool this week and "work-out" for about 30 minutes... good start.  I continue to build strength, although I don't see any of the fluid falling off.  I feel as if my face has deflated a little bit.  Every day is a constant struggle to look in the mirror, but hey, it can only get better.

A few weeks ago I was finally able to accomplish my first painting project for our house.  Thought I'd share.

I was pretty proud of myself that I was able to do "most" of it by myself.  Anyways, hope everyone has a wonderful 4th of July.  Chris and I are off to Iowa to visit with my family, as Monday is my dad's birthday and then Wednesday is the John Deere Classic Pro-Am.  My dad tees off at noon, my brother and Chris are caddies.  Should be a fun time!  I'll definately take pictures, although I won't be able to walk the course due to my strength and helping my sister-in-law out with the girls! :)  Can't wait to love on them!

Happy 4th of July Weekend!