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[altering-perspectives]

Chronic

Y’all, I have a chronic illness.  I didn’t choose it, wish for it, or want it.  I’d prefer to not spend tens of thousands of extra dollars.  I’d happily give it away to whomever wants it, they’re more than welcome to it.  I had a lunch today with a friend and I swear she is literally like the twin version of me (so funny how that works).   I sat there and we chatted, talked, cried, laughed.  Most of all, we were just there to support one another.  As we talked and I was thinking about things – life in general amongst them, there is one thing that kept coming up to me.  Something that I keep running in my head over and over.  It is the one thing that troubles me and it is when someone doubts themselves or their innate goodness because of other people.  It breaks my heart when I see countless stories of people searching for help (medically or otherwise) with no avail.  So when I have people who get mad that I discuss my illness and the shit I went through, I really want to punch them to be honest (read on for why & I wouldn’t really).  Almost ALL of the people I speak to, who reach out to me, have many members of their family that don’t understand and most importantly DON’T support them.  Compounding that is the fact that they are having trouble finding answers from our medical system and the costs those answers require.  These people who desperately need help can’t find it!!!  Think about that – people in need of help desperately but they are turn away or shuffled to doctor after doctor.  To make matters worse medical professionals, family, and friends all tell them they’re crazy or making it up (it’s a vicious cycle & it’s painful to watch).  

These people aren’t crazy, they in need of help, and yet they get doors slammed in their faces and people telling them that it isn’t real that they’re not sick.  I can promise you that every one of these people would gladly trade with you.  Hands down.  These people are selfless y’all.  You know those medicines that help??  You know those advances in medicine??  That newly discovered pathogen, the new treatment for food allergies, for a certain cancer??  Those things that help advance medicine??  There are people out there FIGHTING for those things FOR EVERYONE.   Let that soak in.  These people are sick, spending tens and hundreds of thousands of dollars for therapy, and yet almost ALL of them will still come out to FIGHT for those who are too sick to help or who DO NOT yet have this illness and hopefully never will.  These people are literally dying on treatments I wouldn’t wish on my worst enemy and they’re there fighting for the good of others.  What then does that say about the group that shun them??  Ignore them??  Vilify them??  All because they have the common human decency to WANT to better this world for those coming after, to make a change in an unequal, unfair world where they fell in the cracks.  Dislike my illness, I HATE it with a passion.  Dislike how I talk about it in a public forum, but keep it to yourself because once again you never know the good it is doing.  (**Just to clarify these words were written very matter of factly there is no hidden tone other than a slight sarcasm occasionally.  I’m quite serious and logically no one knows 100% why the human body works how it does thus it seems reasonable that no one person can know everything medically**).

Let’s think about this.  My entire life I have had certain things that I wanted for myself and my #1 was children.  I wanted desperately to have many munchkins.  I wanted to be the mom with the cute holiday décor, the sweet lunches, the mom who visited and volunteered, the one who did crafts and played with her babes, I wanted to make the best meals, create the best life, so why on earth would I give up almost every single one of these things FOR YEARS that I will never get back.  My illnesses are expensive – I’d rather a beach house.  My meds for January and February of this year so far are about $5000 (not counting prescriptions, lab work, copays, organic food, special vitamins, supplements, covered by insurance – and NO I didn’t add co pays).  So in reality if my illness went away right now, I could have a beach condo at the very least (follow my logic here).  If having one of my biggest wishes come true was within my control would I pick the hard road (illness) or the easy (beach condo).   Let’s be 100% real here, I highly doubt that anyone would pick option 1.  Those people who would choose to pick option 1 may need to see that doctor anyway, as for me I’d gladly go for #2.  

The medical establishment in this country and in many others is broken.  It’s broken for many, many reasons that don’t fit the needs of this blog post.  I DARE any doctor out there to sit down and explain every minute detail of the human body to me (and I mean every single bit – not just what we as humans know…. I want it all tell me every single thing every single part of my body does – in detail.   All the functions known and all those special bits around the brain that we don’t have any real info on yet.  I’d like any doctor/scientist to tell me with 100% certainty that every pathogen that can cause human illness has been found.  I’d like for one to tell me with 100% certainty with PROOF why my condition cannot be chronic when it is already stated that it can become a long term issue by the creation of Post Treatment Lyme Disease Syndrome which is listed on the CDC website.  The CDC says Lyme is a symptomatic diagnosis because the testing for it is so bad (I’ve got medical publications for ya if you don’t believe me – straight outta Johns Hopkins).  Beyond that the other -ish that comes with lyme is hardly ever recognized because there are new things that are compounding and creating massive issues.  Add to that mold issues and genetic variations and we have a recipe for disaster.  I am generally logical in my thinking processes and to me it logically would be impossible for any scientist, doctor, or other to ever claim that they definitively know 100% about the human body.  This means that there always will be new things coming along, unfortunately the people who go first don’t always get the best treatment.  People legitimately push you away or shut you down because they do not believe you.  They legitimately think you’re nuts.  That’s fine, think I’m nuts all you want.  However, I’ll be laughing my ass off when my 12 years of arthritis doesn’t cause me a bit of pain (99% of the time) and I’m not on meds for it.  Going from literally pain all the time to none is a HUGE change.  What changed??!!  TREATMENT by a truly gifted physician who also happens to be an amazing diagnostician.  I was led to that treatment because someone spoke about their illness and it resonated with me (similar symptoms).  While not every person who happens upon a post or blog may not be in need of help, some are.  More and more are as our healthcare industry is broken and our food is less and less fresh and safe.  So hate me all you will, my heart is big, I love BIG, but I will HELP whomever I can and whomever needs help.  

**This post is to challenge the perception that many people have about those who are chronically ill. That is its SOLE purpose!**

[altering-perspectives]

This is one persons opinion, it is an opinion I agree with. Others may not. We all have so many ways of coping, thriving, living, etc.. This is just one more way. For me, facing the fear is enlightening and allows me tremendous freedom in return. I take those hard things & share them because it’s WHO I am. I could say that it’s to teach people (that’s true) but the broader answer is that I do it because it’s me and I want to help.

[altering-perspectives]

The girl in this picture from one year ago was uncomfortable in her skin... she wore fake lashes because she was self conscious when hers were falling out, she wore spanx because of the size of her bum, she was retaining so much extra water that she was 30 lbs heavier (from fluid)... this girl is no longer afraid to say that sometimes I hate that my hair and lashes fall out and I supplement. I dislike the fluid gain that made me extra uncomfortable and I most certainly have a goal to embrace this body - scars and all... sometimes with a few added features to help a girl out... don’t judge if you don’t know

P.S. fun dressing 👗🥿up with fancy cars - makeup 💄 by @dior professional stylist cannot remember her name (she was a rep from headquarters & awesome)

👩🏻hair by - @dinaprice

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What a unique way to look at this...

[altering-perspectives]

Could it be that this has all been a lesson??

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Altering Perspectives...

What?!?  Yeah its a bit lofty and it has quite a bit of disadvantage to have such a lofty name suggesting such prominence and importance of someone of much larger stature than a mom at home.  Yet, every SINGLE day we come across them.  We help children to alter their perspective so that they can be successful in their lives.  We help our friends & families and we look at things from ALL different perspectives throughout our days.  So my favorite part of this blog (and its name suggested by a friend and tweaked slightly) is that EVERY single person on this planet has a perspective on a wide variety of things.  Just that simply, I want to understand the differing perspectives, share differing views, and help just maybe one person.  Thats all!  

[altering-perspectives]

This blog will be the main platform for jumping off into the other topics I have been building up over the years.  As you can see there are links to be updated to each of the topics, once they are updated the blog will be updated and you’ll be able to click a link and hop on over to the next page.  

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This photo is one that I haven’t been able to look at for a long time.  We took it when I was about 12 weeks pregnant.  Its shows my devastation as that third shirt is empty and always will be.  I wasn’t ready to share it or my blog with the world until 2/3.  

[altering-perspectives]

Human

As I sit in the quiet of my empty home, two children enjoying their day at school, my husband at work, the animals napping around the house, I remember.  There are so many different things to remember that I can only handle a little bit at a time.  I play music to reflect and let my memories pour out of me through my tears and words on this page.  The haunting melodies tear at my soul and remind me that I am human and my experiences are my own, I have fought many battles (sometimes I wonder how I have done so) with so many more to come.  In times like this I can let go, I can reflect, and remember how far I’ve come.

I can start with the “what used to be” mentality and rage against the world for taking so much from me.  What good would it do?  I had energy, memory, optimism, hope, health, family, and so much more. Now I sit here years later looking at the aftermath of the battles fought and I find myself eerily content with some of the carnage because it brought me silence, peace, and a break from the dramatic machinations of others.  I used to mourn friendships lost and feel even though there were many chances to redeem the friendship before it went sour that I still could have done more. I’ve learned.  Sometimes it just isn’t worth it.  The peace is calming as is the silence though there are times when I remember that some of these battles have left massive scars in my heart, soul, and on my body.  

I’ve lost a lot.  My energy, health, career, optimism, some family, a baby, friendships, and at times hope.  I’ve mourned more times in my 36 years than anyone ever should.  I’ve done my best with my “lemon” of a body (or rather “Lyme”), tried to do my best for my family, friends, and humanity.  My battle has always been two steps forward and one backwards.  It is a never-ending dance that leaves me broken, hopeless, and shattered at times. Today is one of those times.  

As I clean my hardwood floors, I pick up the photo canvases that I have collected to display in a gallery wall in our foyer. I’m reminded that something is missing. Well actually it isn’t only as I clean my floors and look at pictures, its daily.  You see my body is a reminder of one of my most recent and more tragic battles.  

Despite the odds I found myself pregnant earlier this year (did you know in your 30s your odds of pregnancy are 20% at any given month?).  I got pregnant with basically no progesterone in my body.  I can notice all the small changes in my body so I noticed right away that something was weird.  It was odd because my cycle had been irregular the previous month.  This started the process of ultrasounds.  I think I had five of my little one before 12 weeks.  There were concerns about the low progesterone so I supplemented.  My hyperemesis gravidarium (extreme nausea and vomiting) came back with a vengeance – I was on separate medicines to deal with the condition (the goal was to stay out of the hospital and off a PICC line).  There were times I really wanted to crawl out of my body and thought to myself I wish I could make it stop.  I was desperate, couldn’t sleep, was in constant pain and completely tired.  I couldn’t enjoy much because of this sinister condition robbing me of the fun of pregnancy.  After my 8-week ultrasound and we finally had a great ultrasound with the baby (yes he/she has a name) and saw that beautiful heartbeat I started to try to focus my energy on planning the fun things about having a baby, a gender reveal, my children having a sibling, how to tell family, a little baby in my arms, I’d give anything to have that back.  

There are portions of my phone with photographs I cannot look at.  It’s a section I just haven’t been able to bring myself to deal with yet.  The plans for a nursery, colors, things we’d need, planning a fun gender reveal right before my birthday, and so much more.  I had a list of names.  Things to take my mind off that horrific condition and put myself in a positive frame of mind so I could endure and embrace the joy instead of the horror of hyperemesis.  I was so excited for my 1sttrimester screen but also petrified.  We had the announcement photo ready with the kids and my son came with me to the appointment.  Unfortunately, my husband was busy and couldn’t come but I was going to video tape it for him.  Who knew the horror that would lie ahead?  I was joking with the sonographer when I noticed her concern, my 9-year-old was next to me so I asked him quickly to hop out into the waiting room to play on his iPad. It was then my world crashed.  12 weeks 5 days and I learned my baby had passed away.  The chaos began.  Calls to my doctor, my mother, my husband, explaining to my son what had happened. I kept my composure and let my son sit in the waiting room while I dealt with the specialist as he did another ultrasound and they informed me that my baby was gone, my body just had not recognized the loss.  Walking out I had to explain things to my son, he had questions and I tried to answer everything in a kid friendly way so that he wouldn’t be scarred for life.  I kept my tears hidden.

I was greeted at home by my mom.  My daughter bounced home from camp excited and we had to break the news to her before heading to my OB.  The decisions we had to make that day were unthinkable. I saw my baby’s form, head, body, limbs, but that screen didn’t have a flicker.  I had two options:  wait for my body to realize the loss (it had already been a couple weeks) or two have surgery.  Coming from somewhat of a medical family I knew what this surgery was and I couldn’t contemplate this happening to my baby.  I would have loved to be able to bury my little one or at least scatter ashes instead of the cold sterile way that it was dealt with in the hospital. We asked for this option but were denied because it was before 20 weeks it counted as a miscarriage.  Two days later, I went into surgery.  Those days of waiting were the most horrific, as I should have been waiting for those little kicks and flutters of first movement, instead I was sitting in bed knowing that I was carrying a baby who had passed away.  Think about the absolute turmoil that would play on your emotions.  I was wishing against all odds that it was a mistake but the ultrasound tech let me know how they knew against all odds the baby had passed (I’ll spare you the details).  

The day of the surgery I was checked in to the hospital.  I walked in and was completely unable to contemplate how or why this had happened. Could I have done something wrong?  Was it something I ate?  Did a missed dose of medicine do it? Did I eat something wrong?  The questions cycled through my mind.  I asked for the catholic representative of the hospital to come and pray over our baby.  I knew that he/she would never get baptized and I wanted to be sure that this baby had been blessed.  I was given a beautiful rosary and as hesitant as I was to have the surgery I did it. I don’t think I could have waited for two weeks to have things naturally happen (labor and all).  It was that day my baby was no longer nestled safely inside of me.  I know that my baby left days before and I was sure my baby was in heaven but I left that hospital feeling empty.  I didn’t have the baby with ten fingers and ten toes that I was supposed to have.  

The following weeks were hard.  Tears and lots of them.  Fights because it’s harder for some to understand the loss.  I just wanted to be alone and grieve.  I bought one of my favorite plants (a bleeding heart) and planted it.  I had a memory stone with a quote created.  I bought a garnet ring (it would have been the baby’s birthstone) to remind me of him/her.  I went through so much to get to the point where I could semi re-enter society.  Yet that wasn’t the end.  

Did you know that your body may never act the same after you have this procedure?  Periods, cycles, everything can be completely different.  Did you know you could get thrown into perimenopause from this?  Did you know that just because you were pregnant for however long it takes your body quite a while to readjust to life without that baby in there?  Did you know that you could lactate after you lose your baby?  So many things that smack you right in the face after such an utter loss. Platitudes and things such as maybe this was Gods way of saving the heartache of having a baby that had severe disabilities were not easy to hear.  I understand them all logically but when we learned we were pregnant we decided we would do everything in our power to take care of this baby and make sure the pregnancy was healthy.  Platitudes just don’t help when you are left empty handed.  

It’s been a few months now, I adopted a kitten because I needed light and laughter in my house.  His crazy kitten antics have had me laughing and yelling (claws and sharp teeth – ow), but it has brought a light into my life when I needed it. A pleasant distraction but never a substitute.  While he has 10 claws and 8 claws on his teeny little feet it isn’t the same.  Although, the laughter of his antics definitely helps break the mood.  Life has to go on and while it does, I will still remember the day I was supposed to have the gender reveal ultrasound, I know I should be around six months pregnant now.  I should have a nice round belly with kicks and hopefully feeling a bit better from the hyperemesis, but I’m not.  Instead as I’m cleaning those floors I know that this child will never have a picture on my wall, a handprint canvas, a birthday party, a first day of school photo, and so much more.  My body still has not recovered from this loss and is acting wonky so I’m sicker than I have been in a long time, I’m aching and screaming inside some days, and other days I’m happy and able to enjoy life.  

I’ve promised to “Never let go” of the ones I love, here or in heaven and I’ll hold onto that each day as I continue to fight and battle through the barriers in front of me.  I won’t let things hold me back and I won’t let my life be spoiled by things that aren’t important.  I’ll hold onto the good, release the bad, and move on.  I’ll never forget, I’ll never let go, and I promise that I’ll never stop remembering.  I’ll remind myself that I’m human and its ok sometimes to stop and remember, to fall down and need help up, to lay your troubles down for a little while.  So today I’ve let my troubles rest on this page, my tears fall down my face, and my emotions pour out of me so that I may begin again fresh tomorrow’.  

“Our hearts still ache in sadness, and secret tears still flow, what it means to lose you, no one will ever know.”

All my love to my angel baby 

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Beyond the Surface

Hi y’all!!  I’m Court.  I started this blog as a landing page for so much more.  I have other blogs with gluten free cooking, budgeting and diy, dealing with chronic illness, etc. yet here I am on this blog.  Altering perspectives.  My purpose here is just this... to help others and change some perspectives ;) (or at least politely discuss differing perspectives).  

I’ve experienced a lot of stuff on this journey around the sun and I’ve gotten a lot from it.  I’ve seen, grown, experienced, failed, triumphed, and so much more but at the urging of a few friends I’m doing what I should have been doing all along.  I’m writing about it.  It is what I enjoy, its how I best communicate, and its a way for me to express myself while feeling comfortable in who I am.  I don’t hold back a lot when I go through and write some of these things, but I do reread and edit them (every post has a reason for why it was posted and most of it is not for why you’d think it was - so here I’ll be clear). 

One thing that I have encountered over the years is a feeling that I had to explain myself to others (Why?!).  I’m the type of person to over invite to a party so no one feels left out.  I try to include everyone all of the time (they probably hate it).  The way I see it, I try to be sure that I am not purposely leaving someone out in the lurch (have I done this before - have I been a jerk and a teenager/college age - oh man yes - but heres the thing... I learned).  I learned that it is better to over invite and be polite rather than be exclusive.  I’ve learned that it is never wrong to do the “right” thing.  I’ve learned that while you may get “likes” the person who may benefit the most from a post is the one that probably didn’t like, didn’t comment, and didn’t say anything.  I know this because they contact me and I help them.  I learned it is better to say a “kind” word than nothing, that hugs can mean the world to someone, and most importantly I learned that I need to trust my gut.  Most of all I know that I have fought my way through stuff and I’m still here (yeah we all have stuff - I got blessed with “extra”).  I am a fighter, a warrior, and I am strong.  

My aim here is to show what I have missed & learned from so someone else doesn’t go through what I did and to change perspective and stigma away from some of these issues.  Simple & succinct - no hidden agenda.  

So again hello!  Welcome!!  :)