Dot #2 (my health journey continued)

(If you want to review my whole health journey, look back in May 2011 at the posts entitled When April ends)...

If not, here's a brief recap:

•  At age 21, I had pulmonary embolisms (blood clots in my lungs) and was later diagnosed with an incurable, rare kidney disease. It was treated, disappeared, returned, treated, disappeared and then returned again all over a span of 2 years. Then I met "Doc Hollywood", a young doctor who decided in 2001 that we should try something else and see if we could make the remissions last a bit longer...and it has not returned since. 12 years in remission on a prescription drug with virtually no side effects is truly a MIRACLE!
• 10 years ago (at age 25), I got an ear infection that seemed to muffle my hearing. After ignoring it for years and suffering over 50% in hearing loss, I finally had a stapedectomy on both ears in 2009.  My hearing was restored to 90%!!! Truly another MIRACLE

Dot #2
 
Have you ever seen a 2 year old attempt to do one of those Connect the Dot pages in a coloring book? My youngest son was about 2 when he became obsessed with doing them. You can imagine what it all too often looked like. The "connections" were curved when they were supposed to be straight or completely straight when they were supposed to be curved. Sometimes the lines overlapped because he had missed a dot that he later went back to get.
 
And all this led to one thing, an unclear picture.
 
Well, that's kind of how my health dot to dot journey has been and continues to be. Sometimes straight lines end up curved and curved lines end up straight and the lines rarely line up to create a nice clear picture.
 
 It gets tricky here because symptoms and issues that I dismissed as unrelated began to overlap with seemingly no common thread so the picture was unclear, and sometimes still is.
 
It was the summer of 2007. I had been working hard in our back yard to cut down and dig up a large fig tree and a scrappy little pecan tree cluster. Both were in spots that made it inconvenient to mow, which was irritating enough, but our dog also seemed to enjoy getting sick by eating the rotten fruits and pecans that fell to the ground. They had to go so I went out there with my normal gusto and began to cut and dig and pull and chop. I was surprised to find a strange vine like plant intertwined but didn't think much of it since it wasn't poison oak or ivy or sumac. I just immersed myself in the bushes determined to take them down...and so I did.
 
I remember coming in and thinking my arms were rather itchy but just attributed it all to the dirt and sawdust, nothing a good shower couldn't cure. But as I showered, welps like boils or blisters began to pop up on my arms. I thought it was weird because I honestly had never had any sort of allergic reaction on my skin to anything but figured it would just go away. I grabbed some Benadryl and waited for them to disappear...but they didn't.  If anything, the blisters just kept swelling.
 
I had honestly never seen anything like it so I did what every intelligent person does, I googled it...NOTHING.
 
Surely if I couldn't google it, it didn't even exist, except it did. I could see them and feel them. The blisters were getting pretty uncomfortable as they continued to swell. I decided to do what I would do if it was a little blister on my hand so I took a needle and drained one. Clear liquid flowed out just like it would from any other blister and it felt better, so I drained all of them.  Thinking that was the end of it, I went to bed that night only to be awakened by the distinct pressure of blisters on my arms. They had filled back up. I drained them again. They filled back up again.
 
I had no choice but to go to the doctor.
 
The look on the doctor's face when I showed him my arms was pretty discouraging. He asked me what I had gotten into and told me he had never seen anything quite like that...not really what you want to hear. He assumed it was some sort of allergic reaction and put me on a low dose of steroids, which cleared it right up. At home, we joked about it being my "grossness" but by in large it was an incident I forgot completely about. It was meaningless, right?
 
Or was it the catalyst for something else?
 
I looked down one day a year or so later and saw it...

the spot on my right hand...

the spot that lacked any color whatsoever.

 
At first, I assumed I had just gotten into something. After all, I was always getting into something when working on my projects and I was always working on a project. Maybe I had dropped some chemicals on my hand when I was remodeling or painting or gardening or something.
 
I was sure it was nothing until a few days later I looked down and saw another...

the spot on my right foot...

the spot that lacked any color whatsoever.

 

Once again, I did what any intelligent person from my generation does, I went straight to google and this is what I googled...

"Michael Jackson Skin Disease"

(I'm not really sure why I googled this. It seems like a bizarre thing to search but I remember with certainty typing it into the computer. Perhaps it was around the same time as his death and so he was all over the news. Really, idk so don't judge:)

 

the results popped up...VITILIGO.

 

I then began to research vitiligo and realized with almost certainty that I did indeed have Vitiligo and there was no real way to treat it or cover it up. The colorless spots would continue to appear...they continue to appear even now. When people ask me about the spots, I tell them that I have the same skin disease as Michael Jackson, which makes me almost famous...almost.

 

To say God has used Vitiligo to form me and change me would be a HUGE understatement. It has been absolutely transformational...

and not really in the way you may think...

or the way I feared at first. 

 

Sidenote: I have a whole blog in my head about how transformational this has been in my mind and heart but want to stay focused on my health journey right now...it is definitely in the works though because this has been SERIOUSLY weighty stuff for me!

 

It was these colorless spots though that began to really spur me on.

 It was here where I first began to start connecting all the health issue dots

 (not vitiligo spots:)...

 

Dot #2 -Vitiligo is frequently classified as an autoimmune disease, the result of an overactive immune system where your immune system fails to recognize healthy cells and leave them alone but instead wages war and attacks. This is usually spurred on by some small, seemingly insignificant infection. (Remember the blisters?)

 

And that sounded all to familiar to me.

 

I would love to say that at this point in 2009, all of my health issues became crystal clear to me and I aligned them all under one umbrella and named it and became a part of some brilliant research study...

 

but I didn't.

 

It would take 2 more diagnoses for me to really begin to connect it all.

 

But I will tell you what continued to become clearer and clearer to me

 

God was using every little detail of my health journey to make me someone else,

someone He longed for me to be.

 

As my story was unfolding in ways I would not have written,

God was developing my character in ways I could not.

 

 

 

Connecting the dots (my health journey continued)

Since my kidneys were fine, I thought everything was fine.  Other than that, I was just a healthy 20 something year old.  I didn't look sick. I didn't feel sick. I didn't live as if I were sick. I took my 2 pills every morning and my 2 pills every night and no one ever knew unless I told them.

I got the occassional cold...but who didn't? Every illness was dismissed as just a regular illness because I thought it was...but then one day I realized it wasn't. I realized it never had been.

The dots were there but I didn't start connecting them until about 2 years ago and 4 diagnoses later...

DOT #1 -
About 10 years ago, I got an ear infection. That might seem unremarkeable to most people but it was the first one of my life and I was 25. I went to the doctor after a couple of days because of the ache. She immediately put me on antibiotics, which cleared up the pain, but my hearing seemed instantly "muffled" and just never recovered. I turned the sound in my car up because the words were inexplicably unclear...but I blamed it on the speakers because it was an old car, right?

Progressively it got worse but I didn't want to admit it. I was too prideful. I would just deal with it.

And then the ringing began...

At first, it wasn't so bad. I only noticed it when it was quiet so I kept it from being quiet. I always had something on...ALWAYS. But soon my ears rang non-stop, so much so that I couldn't fall asleep at night. The ringing just would not go away, no matter what I did.

I was at my wits end so I mentioned it in passing at a check-up. She dismissed it as me getting older (at the ripe old age of 28) reassuring me that these things just happen. So I resolved to suck it up and deal with it...and that's just what I did.

When we brought home our first son, Matthew, we started using closed caption with the tv so we didn't wake him up. We left it on most of the time, but one day I noticed that I needed closed caption regardless of the volume. And then I noticed other things.

If Danny wasn't facing me when he talked, I couldn't understand him. Sometimes I couldn't understand him when he was facing me. I would get onto him about enunciating clearly...but it wasn't just him.

It was everyone, everywhere. No one spoke clearly. I found myself saying, "Huh? What?" all the time...but got embarrased by that so just started nodding. (Scary to think what I might have agreed to or not followed through on.)

The final straw was when I took my son for his check-up. I was sitting right across from the doctor and the room was quiet but I could not understand what he was saying. I was embarassed and broke down right there crying. I told him that I could hear him but not clearly enough to understand him. He prayed with me (see - awesome doctor) and he immediately referred me for testing.

It took months to get an appointment, but I remember everything about that day so clearly.  The audiologist was a gentle older man. He led me into the "vault" and explained the testing process to me. After several attempts at finding me earbuds, he finally fitted me with a pair of pediatric earbuds because my ears are so small.  We casually laughed about this and then he left the room and went to his booth and began the test. I strained to hear something, anything. I raised my hand a few times when I thought I maybe heard something and then a few times just because I felt like I should be hearing something.

I knew something was desperately wrong when he came back to prepare me for the next portion of the exam because his entire demeanor and approach to me changed.  He took the earbuds off and instead of standing up straight at a comfortable distance from me, he crouched down right in front of me and spoke VERY loudly and enunciated VERY distinctly.

I remember thinking to myself, "I must be absolutely deaf" and I remember tearing up but I made it through the rest of the test and then he came back in.

I looked at him and did the one thing I wasn't supposed to do, ask.

"It's bad, isn't it? How much am I hearing, like percentage wise?"

He looked down and mumbled some stuff about how the ENT would go over my results with me but then he looked up and he saw the big, hot tears streaming down my face. As much as I tried to stay composed, there was just no hiding it. I was in full blown ugly cry.

This gentle audioligist knelt down in front of me and he told me that I was hearing around 55% in both ears but that I had a great ENT and that great advancements had been made in hearing implements. I wiped my face, thanked him and walked out to my car. When I got in the car I texted my husband and I just cried, something I had never done before because of my health. I could handle the medicines and the prognisis and the nearly dying somehow methodically and unemotionally...

 

but my hearing?

 

That stirred up in me a well of emotion I didn't know was there.

But in that well of emotion, God was there.

He sent that gentle audioligist and He sent me to just the right ENT as well. 

My husband joined me for the ENT appointment.  By this time, my lack of hearing had become a joke around the house, a welcome change from the tears. The ENT walked in and went over the results with us but as he talked, I noticed something...He was wearing hearing aids.

I asked him to share his story and it was similar to mine. He too had suffered early, unexplained hearing loss in his mid 20's that had gone undetected over time until it was just undeniable.  He assured me that hearing aids would be an option for me but he had a better option, one that he wished was available to him, a stapedectomy. They would remove my stapes bone and replace it with a prosthetic device.  It was, of course, not without risk and came with a lot of restricted activity for the mother of a 1 year old, but it was what he would do if he were me.

I was unsure. I said we would pray. My husband was certain and leveraged my 1 year old in the "battle".  He knew I didn't want to miss a single word Matthew said to me...ever...and knew that if I didn't do this, I would miss those words, too many of those words.

They tested me again a month later and my hearing had dropped to 45% across all ranges and frequencies. So we signed on. I would have the surgery one ear at a time.

My miracle ENT doctor performed 2 stapedectomies within six months of each other. My hearing shot up to 90% in one ear and about 93% in the other. It was remarkable and unheard of...no pun intended!

God restored my hearing but He restored so much more through the hands of that ENT and audiologist than just my hearing.

I had a new tenderness
                     a new understanding
                                   a new compassion

                                             and  a new story.

 

But there were more dots to come...

When May comes... (a VERY delayed part 6 of my health story)

If you have followed my story at all, you know that May is an important month for me every year because May marks another year that I have made it through healthy.

As the end of May approached this year, I looked at my pill bottles and I knew...
          I knew that I was running out of pills
          and I knew that I was out of refills
          and I knew that I would have to make the dreaded appointment
                       to have blood drawn
                       to have tests run
                       to see the doctor

Now don't get me wrong. I love my doctor. He is a close, personal, family friend and a godly man. I don't even mind having blood drawn or filling little cups, really, I don't.

What I do dread is the reality of what those tests may tell me and what news my sweet doctor friend may have to give me. I can feel fine but if just one number on one test is wrong, then everything is wrong. And I don't want it to be wrong.

I felt healthy, I really did but I made the appointment, I had the blood drawn, I filled the cups, and I walked into the doctor's office. I kept telling myself that April had passed and May had come and so I was okay...and this time I was right. My kidney tests were completely and totally clear. I made it another year with healthy kidneys, marking 12 years of remission.

But as the reality of this flooded over me, I was reminded that I never really finished out the rest of my health story. I started part 6 of "When May comes..." but I never finished it. I stopped at the point just after I went into remission and life was good and I was healthy...but that wasn't really the way the last 12 years have gone. Much has happened since then to me...and to my brother...and the health road has't been quite as simple as it sounded.

To recap, I was 21 when doctors discovered blood clots in my lungs which led them eventually to diagnose a rare and incurable kidney disease. The doctors were able to miraculously put the kidney disease into remission quickly with HIGH doses of corticosteroids (prednisone) but the disease came back about 6 months every time after completing my round of steroids (always in March/April). I went through this cycle twice before I met "Doc Hollywood" who decided to just give something new a try because the steroids were going to eventually wreck the rest of my body.

That was 12 years ago...

About 2 years later (10 years ago), my brother (an incredibly healthy fireman) was rushed to the ER with unexplained breathing difficulties. The nurse just happened to ask his wife, who is also a nurse, if there was any family history of blood clots or pulmonary embolisms. She told them about me but assured them that mine were a result of my kidney disease because that's what the doctors had always told me. Luckily, they looked anyways and found them in him, everywhere. They found his lungs and legs inexplicably FILLED with clots. It is something he has struggled with ever since and continues to battle even today, even on medicine that is supposed to thin his blood and keep it from clotting. In direct contrast, I have never had another clot, at least that I know of, and I have been told countless times by countless doctors since that my kidney disease should not have produced clots.

So, why did I throw clots that one time early on?

Because God works in ways we can not begin to fathom.

Get this and don't excuse any of it as circumstance or chance.

If I hadn't thrown clots, there is a good chance that the doctors would not have found my kidney disease in time to treat it effectively. (Interestingly enough, countless doctors since have told me that my specific kidney disease doesn't cause clots...but it did that time for a reason!)

If I hadn't thrown clots, there's a good chance that the doctors wouldn't have scanned my brother in time to save his life.

I fully believe that God allowed me to have clots that ONE TIME so that the doctors would find them in my brother and save his life. I don't think that they would have ever looked for them in him otherwise, at least not in time.

They did save his life but his fight for health continues on more fronts than even I know about. He is incredibly brave and incredibly strong but perseveres against much so please pray for him.

My body battled on as well.

I just wasn't aware of it because my kidneys were fine.

I just wasn't aware of it because it all seemed like unrelated bad health luck.

Unfortunately that will have to be continued another time because like I said above, this journey has been anything but simple.