Tuesday, March 29, 2016

Emotionally Blank.

There's a peace I've come to know.
Thought my heart & flesh may fail.
There's an anchor for my soul.
I can say.... "it is well".

Jesus has overcome.
And the grave is overwhelmed.
Victory is won.
He is risen from the dead.

I Will Rise - Chris Tomlin

Blame it on Resurrection / Easter Sunday. Blame it on the rain. Blame it on whatever, but this song played on my way to work this morning & I lost my ever lovin' mind. I bawled like a baby. Finally. I will admit I have felt as if something were wrong with me to not emotionally react to the news I've received. But I had a good cry & I was done. I went to work seemingly without a care in the world. It's quite odd to walk around as if it's a perfectly normal day & your life is trucking along on the same track it were on, say, ten days ago.... and no one around you is the wiser. No one knows that on the inside you're twisting and turning like a gnarling tornado, that your entire life plan just went out the window, that you'll never feel your own baby kick inside your womb, that you've been handed the diagnosis that will probably ultimately kill you someday. Dealing with this is not for someone who is extremely existential in nature. It's pure turmoil. Those are the only emotions I've been good at feeling. Just an utter sense of a big black tornadic cloud. 

THAT is what is going on inside of me. 

My husband took me to lunch & we had an otherwise 'normal' day from the outside looking in. I came home, took a nap, and began packing & preparing for our trip to Dallas tomorrow. I admitted to my husband today that I'm a little upset that I feel this LIFE LONG DREAM of seeing a Morphea specialist, getting it approved & us looking forward to it with such joy & hope...... has been overshadowed by all of this other medical stuff going on. I hate that. I wish I could look forward to Thursday's appointment with the same joy I felt two weeks ago when I had no clue any of this was going on inside of my body. But, it is what it is. I'm sure getting out of town & us getting to Dallas will help reset my outlook. 

Otherwise I'm still emotionally blank. Stunted. All I can seem to worry about tonight is how to tell my parents. How do I tell my parents I will never be able to carry their grandchild? How do I tell my parents, who've had a hard enough time dealing with the fact that they feel like they gave me a rare disease (Scleroderma) that I've got an even worse rare disease that we have no answers for!? They're not near me. They don't have Skype. Where do I even begin.....

Monday, March 28, 2016

Just Breathe.

Photo Credit: Chintermeyer

Well. It happened. I received the phone call I've been {un}patiently waiting for. My cardiologist's nurse called me this morning and let me know that I do indeed have pulmonary hypertension (PH). I am scheduled for a right heart catheterization later this month to assess the damage, severity & see if there is anything else of note. I also still have two leaky valves and now I have two valves that have fibrocalcification & also a heart murmur no one has ever picked up on. I am officially diagnosed with both heart and lung disease. After the RHC we may have more answers as to why, but we may not. Is it due to Localized Scleroderma (Morphea)? Isn't supposed to work that way! 

How am I feeling? I honest to God can not answer that question. I'm not sad. I haven't cried. I'm not angry. I haven't thrown something or yelled. I really feel as if I should be showing some emotion & yet I'm not. That in itself is confusing. Why am I not an emotional wreck? My entire life has just been turned upside down. 

I can never carry a baby. We planned on trying to start our family this summer. I know this will more than likely relate to my cause of death at some point in the future. My living to a ripe old age of 90 & sitting on the front porch in a rocking chair with my husband by my side is probably a pipe-dream at this point. In the next 20 years I will likely rely on oxygen to get through the day or night. I can't have an elective surgery. I can't go under for surgery without a greater risk than I've ever signed off on. 

I don't have answers to all of my questions right now. I don't know how to even begin thinking of how to tell my parents this news. Other family members? Friends? From what I've learned over the last week is that the majority of people will not understand the severity of this disease & what it means for my life. I feel like throwing my hands up and saying "I give up". But I know that's not what I can do or will do. I've lived with a very rare disease for 27 years & I've never once given up. I've fought for awareness and for the people around me & closest to me to understand. 

I have fought everyday of the last twelve years just to thrive. I will not give up now. I will fight every single day to just breathe. 

Sunday, March 27, 2016


Today is Easter Sunday. Resurrection Sunday. 

There is a stark contrast between the celebration of Christmas and Easter. Yet we are essentially celebrating the same thing - the life of the greatest gift to mankind - Jesus Christ. I've never understood the stark contrast. And maybe in the most {& best?} Christian families, they are similar & celebrated in similar fashion. I grew up without much celebration on Easter Sunday. No reason. I certainly don't blame my parents for that. We always had an Easter egg hunt. The Easter bunny always came. Sometimes we had a fancy dinner. We never really went to church except a handful of times. We dressed up a couple times when I was very young {we have some photos to prove it}. We never did really take family photos - just some of me & my brother when I was 6. Those are the only ones I recall. I didn't grow up in the church. I probably went to actual church on Easter more when I was in high school & going on my own than I ever did as a child. When I went off to college & would come home for Spring Break, Easter often fell on the day I had to spend five hours driving back to campus. Then I ran off and got married & my husband and I have never been faithful churchgoers. We've never taken a family photo on Easter. We've never made a meal. We've honestly never acknowledged it outside of his giving me Easter baskets, my decorating for "spring" around the house & well, I guess that's about it. Sad, right? I'm actually pretty motivated to change that. We planned on going to sunrise service this year at a local amphitheater, but I've been battling some demons {& fatigue} & we decided on Saturday night that we needed to focus on me resting on Sunday. I still felt bad. Guilty. I really wanted to go. I truly became a Christian by choice in August of 2001. Since then I've lived my life for Christ & been a totally different person. In the last few years I've let old habits slip back in & depression/anxiety have reared their ugly heads {after coming to Christ those were GONE for many years}. 

I'm facing a life change. I guess it often takes things for us to realize other things. When someone goes to prison, they come to Christ. They're reborn. When someone is diagnosed & fights cancer, they come back to Christ. They fight to live & they fight through prayer & a growing daily relationship with Jesus. We all know it takes those things for us to wake up one day & realize something has to change. Often that voided feeling in the pits of our stomach {not to mention our soul} is a big gaping hole where JESUS fits. 

I've always celebrated {& gone all out for} Christmas. Why not Easter? It's a renewal. A rebirth. A resurrection. He LIVES. I want to live. I want to live through Christ. I want to live the life I'm capable of living. But I've got to come back & grow closer & nurture that relationship. Next year I will CELEBRATE Easter & all that it means. I will start new traditions with my husband. I will not be the hypocritical Christian any longer who celebrates in all the commercialization at Christmas time & yet no other time. I can't do that anymore. I will not be that person. 

Jesus Christ is why I am able to face tomorrow. 

Like I said, my husband always surprises me with something, bless him. We are going through a rough time right now. This card.... I will treasure it forever. The words & his own words inside brought me to my knees. Without Christ, we have nothing. Without faith, I have nothing. My husband knows that. He knows I rely on the Lord for strength. And he knows we will be relying on him from here on out. 

Saturday, March 26, 2016

Let's Praise the Good Days

Today was a GOOD day.

It is hard to live a life where the bad days outweigh the good ones. But, such is my life. I made a vow to myself many years ago to not complain. Don't get me wrong, I complained & threw pity parties internally quite often, but I put a smile on my face & conquered the world. Over the last year that has become increasingly harder to do. The bad days weigh me down so fully. They seep joy out of the smallest things. They leak over into my marriage and my social life. They've successfully infiltrated my hobbies & my relaxation time(s). I hate the bad days. I loathe them. During every single one I wonder how my life ended up this way. I wonder how I will continue on this path. I wonder "why me, God?" I wonder if my husband loves me. I wonder if I'll ever be a mom. I wonder if anyone cares. I wonder if I'm a good enough puppy mom. I wonder so many things that my mind spins on its axis nonstop (or should I say atlas? A little Chiropractic humor for ya there). I can literally drive myself insane. So then I take a nap. 

But the good days. Oh God, how I adore them. The good days are absolutely amazing. The good days are worth living! The good days are what my life is all about. The good days are the days where anything is possible and I am worth all the love in the world. The good days. I love them. 

Today was a good day. 

Friday, March 25, 2016

Fearfully Waiting....

I began Thursday morning with a Cardiology appointment. I was dressed to go straight to work, but when leaving the house I thought "maybe I should bring my tennis shoes, don't stress tests involve a treadmill??" And yes, yes they do. So I was thankful to have those! My husband accompanied me to the appointment. Little did we know we would be there for almost five hours. FIVE. HOURS! I do have to say I really liked my Cardiologist. He was kind & actually listened without once trying to cut me off. He never came across condescending and was not a jerk! I think part of me was most anxious about that part. He took our concerns seriously & was shocked that no one had ever said anything. He had copies of my old echos & literally came into the room and said "so you have pulmonary hypertension?" 

After our consult appointment, we moved into the testing phase which involved a lot of waiting. He performed a nuclear stress test which involves an IV with radioactive dye injected into it. Then you wait 30 minutes, lay down to be scanned, then perform the walking on the treadmill with a significant incline, then more dye is injected & you are scanned again. Then I had a new echocardiogram performed. In the office they had done an EKG already & of course measured my systemic blood pressure. 

And now we wait. Of course Friday is a holiday for their office (Good Friday). They said I should hear something early next week. If the echo still indicates pulmonary hypertension, I will be going in for a right heart catheterization (RHC). If it indicates any other issues, I'll be undergoing a RHC and a left heart catheterization

I'm simply trying to remain calm and am hoping for the best. Pulmonary hypertension CAN reverse/resolve itself if the underlying condition is treated (if you're suffering from secondary PH). If my earlier PH was due to sleep apnea (which I had, but do no longer) or CREST (which has significantly improved & resolved itself over the last 5 years, I'll write about this soon), than maybe I have nothing to worry about. We shall see! 

Thursday, March 24, 2016

Life altering discoveries

At the end of January it randomly hit me one day that I am only three hours from Dallas, TX & that the nation's leading expert on Morphea (Localized Scleroderma) is located there. I contacted my primary care manager (PCM) & requested a referral from my nurse (who is pretty amazing btw). She took down all the information because we knew we would probably have to fight Tricare in this process. Primarily because they would first say I could see any number of Dermatolgists here in the local area, but also because Dallas is in an entirely different Tricare region - which means a different insurance company. Tricare is military healthcare. It is broken down into three areas in the continental US. I currently reside in Tricare South. Dallas is located in TriWest. You would think Tricare means Tricare, but in actuality, Tricare South is Humana & TriWest is United Healthcare. We knew that would factor into my company not necessarily wanting to cover a visit to a physician in an entirely different network. It's just how these things work. And of course they bounced back the referral requesting more information & that's where my nurse worked her magic. Right after I asked my PCM to put in this referral, but before it was bounced back, I had a visit with my new Dermatologist in the local area. I told him about the specialist in Dallas & he offered to also push a referral through, which he did. Between the two, Tricare eventually approved my visit to Dr. Heidi Jacobe at UT Southwest in Dallas! To say I was stoked was an understatement. I have had this disease for 27 years and I have never once seen a specialist, much less someone who has seen so many Morphea patients in their practice. She also runs our DNA repository & patient registry

Around the beginning of March, I realized that there were things from the course of the last 27 years that are rather fuzzy. I thought reviewing my old medical records might help me clarify & remember some things that may help me at my appointment. I especially wanted to dig through my original diagnosis records & even prepare them to take with me to Dallas. I have a stack of about 1500-2000 pages of medical records. I used to think it were fewer, but realized if you stack four reams of paper on top of one another it would closely resemble my pile of paper! I ordered these records when we prepared to leave Biloxi, MS in 2010 & move to Omaha, NE. I did this because in 2006 when we moved from Shreveport, LA to Biloxi, the AF lost my records. They were later found, but we went a few months with them unable to locate them. I didn't want to have to deal with that again. So I finally sat down in early March & began digging through my pile of records. As I did so, I organized the things I wanted to keep & made a stack (about 1300 pages) to shred! As I went through my 'keep' pile, I began organizing things into lab work, tests, patient notes, etc. For tests, I organized them into lungs, hands, heart, skin, xrays/CT/MRI, etc. 

You see, I had a very good & proactive Rheumatologist when we were stationed at Keesler AFB in Biloxi. During the years we were there it was thought that I was developing CREST syndrome (which would indicate a change in severity of the type of Scleroderma I have). I had some pretty severe esophageal issues going on, I had mild Sclerodactyly, and calcinosis on the knuckles. He was always monitoring me through tests to ensure we caught things early if they were to begin worsening or changing. In preparing for my Dallas appointment, I came across three old echocardiograms (ultrasound of the heart). And in reviewing those echos, I noticed some alarming information

Two of the echos are from 2009. The earliest is from 2007. There is a significant change in pulmonary function between the years. In my first 2009 echo, it states my pulmonary arterial pressure is estimated to be 35 mmHg. In the second 2009 echo, it is estimated that my pulmonary arterial pressure is 40 mmHg. On each, it states the patient has pulmonary hypertension. Between those two echos there is also a change in severity of tricuspid regurgitation and pulmonic valve regurgitation

Key point here = no one ever said a thing. Nothing

I then began research in earnest, called my PCM immediately for an appointment, and began losing my ever lovin' mind. 

For years (since 12/2006) I've had trouble breathing, tightness in my lungs, & through the years have developed pain in my chest {always}, an incredibly high resting pulse rate (100), pounding in my neck, trouble doing extremely active things, and systemic high blood pressure (not related to all of this, it's actually rare to have both). 

By the end of this week I will have had a full cardio workup and will be on the road to seeing exactly what is going on inside my body. It is fear inducing, anxiety provoking, and just plain scary. But outside of anxiety, I'm completely numb. I am refusing to allow myself to process what this means until we have all test results back and are able to properly assess what is going on. THEN I will begin the emotional process of figuring out how to react. How to proceed. How to deal. 

Wednesday, March 23, 2016

Finding Faith

This is a picture of me & my mom in 1979. I've been reminiscing a lot, looking back at childhood photos, trying to figure out what this life has in store for me. I had no idea, as a child, that I would be so tragically flawed as an adult. But I don't think any of us expect the hand(s) that this crazy world deals us. Without faith in something greater it would be easy to lose my mind; dig in to a hole so deep that I would never again see the light of the day. But you know as well as I do that on a daily basis we lose perspective. Daily we struggle with this life, this world. We feel anxious. We feel sad. We feel angry. Thankfully the goodness most often outshines the dark. Over the past few years I've become so tormented by anxiety that I have to make a concerted effort to see the good. I know that has a lot to do with my faith (or lack thereof) & the stagnation of my relationship with Christ. It's something I know needs to change, but when you're so wickedly exhausted day in and day out, it's incredibly hard to put forth effort into anything but existing. My goal is to begin working on this relationship again. I need to get back to where I know I'm capable of being. Where I live by faith. 

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