The Baby Name Game!

I'm not sure if this is difficult for all couples, but my husband and I had a particularly hard time agreeing on 2 names this time.

Hubby likes traditional & I prefer names that are unique, that not everyone else has.

I'm not announcing the final choices publicly, but a select few know.

But I was laying in bed at 3am...........thinking(that's my "philosophical hour").

This poor baby does not know it, but it is in hostile territory.

It's floating quietly in the "dead sea".....oblivious to the fact that it is surrounded by pain & suffering.(And that's only ME, not the mess OUTSIDE me!)

This baby' s "house" is chronically ill, has high blood pressure, asthma & was built in the 70's! Yikes!!!!

See?! Hostile territory!

So I'm laying there thinking...."Man...this kid is a little warrior!"

This baby is fighting, just to survive.

I wish I could put one of the names to this little warrior.

But as I was thinking that, I realized....both names we chose are types of warriors. Both of them, fighting their oppression.

So until I can announce who is officially inside my hostile environment....

this little baby will be known as:

My Little Warrior!

But wait.....symbolism is not lost on me(ahem....Mrs. Clancy....I swear I learned something in your English class!)!

The "Dead Sea", while being a hostile environment, is also very healing and soothing to people with skin ailments.

I too, while being a hostile environment, am also filled with hope, love & faith, which are very healing. If my little warrior can survive this first "quest" for life....great things are waiting on the other side!

What It Means To Walk By Faith!

It's been a long time since I wrote a post, but I feel like this needs to be said.

I am pregnant.

My last pregnancy was almost 13 years ago and I'll be 39 in 2 months.

I also have systemic mastocytosis, high blood pressure & asthma.

I have had a few people question me on my pregnancy.

To some people I may seem crazy or stupid or selfish.

They do not know the whole story.

I believe in God. I believe He has a plan for all of us.

That plan rarely looks like we think it should. 

But I am a firm believer in going where He leads me. It has been a hard journey but greatness has come out of it.

So who am I to question his motives.

Some of you know I have a son with Aspergers.

We have struggled for a long 10 years of anger, depression, fighting & panic. There is NO WAY in those years, that I could have had the time & energy for any other child.(But none of this ever crossed my mind because I was perfectly satisfied with ONLY 2 kids.)

After much growing(on my part), my son & I are now very close. Something I am very happy about. He is a blessing and I would not trade all those years of struggle.

Since then I have been bombarded with a "feeling"...more like someone "pushing" me, to want another child. This is insanity, and people close to me know I'm not baby crazy & never have been. It was this still small voice I kept hearing. I could only think one thing. God never placed this desire on my heart before, because my son needed all my attention. Except, NOW....seemed so ridiculous! Why would God lead me in this direction when He knows full well, I'm not in a good place with my health AND I'm getting old!

I was bitter....and I DO mean bitter!! 

How dare he.

The voice never went away...it only got stronger.

So I finally decided I'd follow WHEREVER he leads me.

My hubby wasn't so sure, but he trusted in MY faith.

This journey to get here was not easy either.

It was definitely a test of faith.

Going off continuous hormones, has been rough on my mastocytosis symptoms & each month I got sicker & sicker, but I was not going to lose my faith.

In June, I suffered from a blighted ovum and miscarried. I was discouraged, and was ready to leave that path & take the easy way out & go back on hormone replacement so I could feel "good" again.

But that small voice got louder...."follow MY path".

So come August, when I got that positive test finally....I knew I was on the path that God laid out for me.

It is not easy and will be harder and harder, but I KNOW I am walking by faith and I will continue to do so for as long as I breathe.

"I LOVE MY BODY"

...or so society tells me I have to think this. In this new age of body acceptance, we are told that we are to accept how are bodies look & LOVE it! I get it, I really do. As a mom of an 11 year old girl and a 14 year old boy, I want my kids to have a healthier image of themselves than I did when I was young. I hated my body back then, because people told me I wasn't enough. I wasn't skinny enough, I wasn't tall enough, my boobs weren't big enough, etc. I look back at pictures and I'd give anything NOW to look as good as I did. 

My kids have great little bodies, but even they feel the pressures of society and wish they were skinnier.

"I love my body" is the biggest lie I could tell myself. Why do people force that down our throats, especially when it's, alot of times, the furthest thing from the truth.

Why should I love something that betrays me more often than not? Why should I celebrate a body that can't even digest it's food properly? Why should I be proud of the fact that my skin is so sick, it keeps me up all night in pain? Why in the world would I love this vessel when it can't follow the rules of nature and do what it's supposed to?

WHY?!

I hate this body, most days. If I'm being honest. It's gross and naughty.

But then I remind myself, it's strong. It housed & birthed 2 special souls. It has sustained my life through things I've never thought I'd get through. It can still complete a workout(no matter how much it retaliates against me).

I look in the mirror & see this broken body staring back at me.

But that's just it, isn't it? It's STILL staring back at me. It hasn't COMPLETELY failed me yet.

So I should love it, right?!

(HA! I wouldn't go that far...)

Let's just say I'll ACCEPT it.

And isn't that truly what "Body Acceptance" means?

This Is A Public Service Announcement...

No, seriously! It is. 

As I sit here way too early, AWAKE, at 3-something on Mother's Day!

It's Sunday! Not a school morning where I have to get my son up for the early bus.

Bone pain. Two little words for a big pain in the butt. I've never had it, until I let someone else take control of my health. 

A year ago....I let a man talk me into believing he could totally fix me. A Chiropractor.

I did the initial interview....pretty much letting him know I was allergic to life(or so it seemed). He was so confident he could fix about 80% of my issues. WOW!!! AMAZING! After almost 7 years(at that point) of suffering, that sounded like a miracle.

I went to MANY sessions...3 a week at first, then 2 a week. I was told my spine, hips & skull were all severely out of alignment. Makes sense, since I had a childhood injury where I twisted my neck in an "S" shape. I also fell at work, smashing my head on concrete when I was pregnant with my oldest.

I let this chiropractor crack & snap & knock my body around, thinking I was on my way to healing. 

Little did I know each of those manipulations was sending more & more histamine into my body, overloading my already full body with more of what I didn't want.

I stopped going after 2 months because we ran out of money to pay him in cash. Thank God because I'd be so much worse if I continued to go.

I now suffer from horrible lower back pain that keeps me awake at night. If I sit down, everytime I get up, my hips get shooting pain in them. If I turn at my waist, pain shoots up my spine & feels like I pulled something. With all the skull plate knocking he did, the overload of histamine in my head has started this scary cycle of constant hair fall. And my most "fun" issue I've been left with is dyshidrotic eczema. 

For the last year....yes it stinks my hair is falling out, but my fingers have been blistering up with clusters of hundreds of tiny fluid filled holes under my skin. They pop, open, ooze, peel, crack open & start all over again....and again.

Let's get down to the root of the problem...

The act of manipulating bones, causes our body's mast cells to degranulate(burst open & release histamine, among other things)

People who already have an overload of histamine in their bodies, or mast cell diseases....BEWARE! I wasn't diagnosed at the time, but when I told the chiropractor how allergic I was to everything, that should have set off alarms for him to not touch me! Obviously, some practitioners aren't staying current with diseases & such, but they should be aware that when they manipulate people's bones, they are releasing histamine. Even the act of digestion creates a release in histamine in our bodies(the reason why I can't comfortably eat solid food now)

I wish I never would have let anyone touch my body.

The damage is done & I have to live with it, but if I can help atleast one person avoid the damage....stay away from chiropractors! Be your own activist....care for your fragile body.

Even if you're not diagnosed yet....if you seem to be allergic to everything....stay away from chiropractic adjustments. I realize they help some people, but if you are like me....you are better off keeping your crooked body. ;)

I would give anything to have my separated skull plates, twisted hips, and wavy spine back. LOL!

Diagnosed!

So, after 7 long years, I was finally given a name to all my "issues". And really it was only by chance. I stayed away from the doctors office all year until September 2nd because, truthfully, I was sick of hearing that I was normal, just overly sensitive. All the specialists wanted to do was put me on anti-depressants. I KNEW that was not going to help me. But this summer, my hair started falling out in large amounts. I put up with it for 2 months, but when my volume was decreased by a third, I decided it was time to see if there was some sort of malabsorption or deficiency. I can only handle 4 food items at the moment so I figured that was the case. My doctors answer was it may be hereditary or it may be a side effect of my low dose birth control(which I use for hormonal balance). I really, really hated hearing that. But in passing, I mentioned a full back rash that doesn't respond to cortisone creams(or anything else for that matter). I normally wouldn't mention rashes because I literally have them all the time. It's just me....the itching queen! ;)

But I had noticed that the rash gets worse when i would cheat & eat some fruit blended up in my smoothie. I just had a feeling I should mention it. My doctor asked how long it's been there. Well, FULL back...for 7 months. He typed away at his computer & asked if I'd be willing to get a punch biopsy. Well, sure, as long as I'm not made to get another colonoscopy or a giant tube down my nose into my throat(AWAKE!) then I'm game. I had to wait a week....then got a chunk taken out from behind my armpit(which with novocaine was painless even with stitches). 

Waiting is the hardest but honestly I've gotten so many tests done that come back normal...I had no hopes for any kind of answer. 

I got one though........

Systemic Mastocytosis!

I was teary leaving the office...I didn't really know how to feel, finally having a name after 7 years, but not really liking the name I heard. It's rare, which means scientists & pharmaceutical companies aren't doing the kinds of research they are for other more well known conditions. Which means not alot of options in treatment & no competitive pricing. My pharmacy called & said they weren't ordering it unless I'm okay with the $700 price tag for a 24 day supply. 

Yeah...NOPE!

So back to the drawing board....but this time with a clear direction.

Crazy thing is....I've prayed for answers each time I had tests done, but this time, literally, cried out to God, wanting to know if I was WORTH an answer. It was a feeling of helplessness, wondering if my journey was even meant to end while im still here on earth. I feel thankful & blessed it was THIS time that I got His answer. I AM worth an answer! I know nothing is easy, and I have benefited spiritually from my trials.

I'm blessed & happy I can keep my smile on my face, knowing there is someone watching over me & my struggles.

What being an Introvert means to me....

Most people see me as antisocial. I have been called snobby, judgemental, old fashioned,etc. I do not hate being around people. Yes....I'm guilty of being a coffee SNOB(Starbucks , please....Dunkin can suck it!). And I probably am a tad judgemental, but I think we all are to some extent. Old fashioned is a term used for me because of my Christian values....So I'm okay with that one. 

What I really am is introverted. 

Personally....there's way too much drama when it comes to "hanging out" with people. I prefer as little drama as possible from outside sources, cuz I have alot handed to me from within my own family. I also think that introversion(is that even a word?! if not....you get what I'm saying, right?) can change in intensity when our lives around us change. I always kept to myself & was most comfortable, as a kid, when I was alone or with my dogs. Then when I had kids, I was able to be a bit more social, for their sakes. Then about 7 years ago, when I got sick, I NEEDED to stay close to home most of the time. 

Let's get this straight....I don't LOVE being introverted. It's lonely most of the time. I've lost most of my friends BECAUSE of it & the lack of understanding people have for someone like me. Don't get me wrong....I KNOW I'm not a bad friend. I'll give all of myself & help whenever I'm needed. I won't however ASK for help in return, so I think that is a turn off to some people.
My hubby is an extrovert...he thrives on being around other people. This fact leads us to live separate lives. I see the girls that he sometimes hangs out with and it makes me sad & a little self conscious that maybe he would prefer I were like them & not like me.
I don't want to turn people off, but because I'm a bit misunderstood, that's what happens. If I could, I would choose to be less of an Introvert.
But for the time being I will retreat into my world of books and sewing machines.
Come join me, if you're brave!  ;)

Looking Back...

It's almost the end of 2013...and I sit here thinking about what has happened this past year. I had a diagnosis finally, to one of my many health issues! WHAT, you say?! Yessiree! I got really sick back at the end of March. I couldn't eat solids or else I'd be miserable. That went on for a couple weeks & I lost 15 lbs. Then I caught my first stomach bug in my life, from my sweet Bella. I'll spare you the details, but I then couldn't eat ANYTHING for days, so I went to the doctor. He immediately referred me to a surgeon to get an endoscopy. That was one of the worst consults I've ever had. He sat there and pretty much told me he didn't know why I was there and that an endoscopy wouldn't help me. I almost cried & it took all I had in me NOT to. I still don't really know what changed his mind but he finally agreed to  the procedure. I struggled through another week of not eating and feeling sick, and then had my endoscopy. I woke up, in & out of consciousness and heard the surgeon telling me I had bile reflux & acid reflux. I saw a picture of my esophagus with bright lime green liquid in it. He gave me some packets of cholestromine and told me this would fix everything. If you've ever taken this, you know it's like drinking sand. Well, guess what? Surprise, surprise, I was allergic! I was covered head to toe with a rash....

So I started a couple months of different pill combos to see if I could treat the bile reflux(which is worse than acid). In the meantime I had some blood work taken & all came back normal except my vitamin D level was supposedly too high. I found this hilarious since I stay inside away from sun because I rash up from it. I also have a very unbalanced diet due to my issues...so I was confused. The nurse told me to stop taking any supplements with D in them. I told her that my multi has D in it and she informed me that there were tons of multi' s without D. So I went on a search for a D free multi. Guess what, I found 1 very expensive one that was a pressed pill(which I can't take because they pass through me unabsorbed...what a waste)

So I stopped taking a multi. About 2 weeks later....

The diarrhea monster reared it's ugly head.

It kept getting progressively worse over the weeks. I called the doctors office and was told that I was prone to that, right? But they
 finally agreed to test my poop for bugs and stuff. I also had blood work drawn too. My doc said I'd have to get another colonoscopy!!!! I asked him if I could just go back on a multi, because that's the only thing that really had changed. He told me that vitamins are just a scam, made up by the pharmaceutical companies. But, he said, do whatever. I started taking my multi again and guess what?! Within 3 days, I started to become more normal in the bathroom! I knew it.......

I wish I would have just ignored doctor's orders because it would have saved me 2 months of suffering and my kids could have enjoyed their summer, rather than staying home because of me. 

I saw an endocrinologist in the midst of all that who told me I was normal, just that I was more AWARE of my body & it's workings. He said other people feel the same as me but don't realize it. REALLY?! 

He ended up running some tests just to appease me & he called me personally, telling me that I actually DO have something wrong with me, that my C- reactive protein was elevated. He told me it'd be hard to figure out why though...

Moving on....

My regular doctor referred me to a closer gastroenterologist, so it'd be easier to get to(only 1 hour instead of over 2!)

I saw him twice....and I will never go there again.

He doesn't believe there is such a thing as bile reflux, that everyone has bile in their stomachs. I'm not even a doctor and I know that our pyloric valve at the base of our stomach opens enough to let food out but closes to keep bile out and prevent backwash. He tried me on acid reflux pills(2), but they messed me up more. He got mad when I didn't call him back to get new meds. I told him how I was super sensitive to chemicals and that I was interested in the stretta procedure, to keep bile out of my esophagus(which by the way is getting more damaged as the days pass...it has ruined my singing voice and caused all kinds of weird growths. Esophageal cancer is constantly in my thoughts...)

He told me no way.....and that I need to try more acid meds. I refuse to do that, not only because the side effects, but PPI's, do more harm than good in the reflux battle. 

Again....moving on...

I go see my doctor for a messed up ankle, as I leave I mention the stretta procedure. He tells me he'll look into it because he wants to help me get some relief. I get a call the next day, personally from my doc! He says that there is a new minimally invasive procedure that they are performing in my state! 

The LINX procedure.

He told me to look it up & that'd he'd refer me.

A light at the end of one of my long tunnels! 

I am going January 13th to see the surgeon...yes, I'm driving over 2 hours, but with hopefully help for the weary.

I tell you what.....if I didn't believe & trust that God has my back....these past 6 years and 4 months would not have even happened. 

Pain, sickness, and discouragement, can do a number on one's head. I am reminded on a daily basis that God is good and I'm truly & thoroughly blessed.

I am looking UP & ahead to healing in the new year!!!!