Letter Five

Dear Vera,

Guess what?! I had another party at MBMC. This time, Dr. SO was the guest of honor. That was on Sunday, 11-28-10, just in case you were wondering. That makes it every 3 weeks now, since the beginning of this journey. Nurses, and doctors alike saw Sister #1 and myself as we walked in, and greeted us. It was nice to know that they remembered us, and disconcerting to know that we have been there that often.

So Dr SO gave me another perscription and told me to follow up with Dr dV the next day.
Dr. dv is incredible, as I'm sure I'm told you a thousand times already. Dr. dV said I'm right where I should be, regarding treatments and such, so she put me on yet ANOTHER medication that is supposed to help my bones.  A few of the side affects of LU is loosing bone density and severe bruising... which I have already experienced. I must say it's quite disturbing to look down at my body and see several bruises, and not have a clue as to how I got them. She also gave me a horse pill... she called it a 'vitamin'. It's MONSTEROUS! Never the less, I am diligent in taking all my meds. The top of my microwave looks like a mini-pharmacy.

This game of back and forth is tough; I'm not even going to try to deny it. The back and forth between home and the hospital is almost as exhausting as the sickness itself. I will make it. Anxiously awaiting the day that I will understand all of this; I will endure until the end. Quitting is not an option.

Ps - I bought you something today.

Letter Four

Dear Vera,

My oh my.

These last few days have been quite interesting. I called off work a few days ago because of a special trip to MBMC. Doctors JS, BG, and JO are so compassionate and caring; simply put, they make the ER barable. I must admit, I think they are fabulous. Altho, it's quite frustrating to be in and out of the hospital; in because of the pain, and out because they really can't do anything for this crazy disease. I'm in the middle of a roller-coaster ride, and I can't get off... even if I tried!!

Today my dosage went up on my LU shots. So instead of going to the doctors office every 3 weeks, I'm now going once every 3 months! I'm finally showing some improvment! YAY!! I'm still learning how to take care of myself, what and what not to do, what medications work the best, and which ones I'm allergic to. Those would be moriphine and dilaudid. The last time I graced the ER with my prescence, we quickly discovered my allergy to moriphine as hives started to break out on my wrist and continue to go up my arm.

To say that I was concerned would be a gross understatment. When I asked what pain meds they had decided to give me, Chvana quickly came to the side of the bed and informed the nurse that my mom and sister both were extremely allergic to this drug. Nurse No-Name (he wasn't very friendly!) quickly replied that, 'I'm just doing what the doctor ordered.' Well, he quickly felt very concerned, as he watched the drug wreak havoc in my body. Right then I learned no matter what, I'm going to ask questions, no matter what the hospital staff thinks of me.

ASK QUESTIONS; big or small. If you don't know what's going on, how then can you take care of yourself?

With the many visits to the ER at MBMC, I've learned which arm is able to take the stress of handling a IV port. My poor viens have been through a thorough work-out over the past 3 months, due to the countless IV ports and many blood tests. So it was no surprise to me, on one of the many visits to MBMC, that somebody 'chose' the wrong vein. Much to their dismay and my exceeding discomfort, my viens in my left arm were not giving a blood return strong enough to support the port.

So Nurse T tried again... thus giving me two ports to deal with during that particular visit. Thankfully that has only happened once! I do believe once is enough in my life time. I do not thoroughly enjoy being poked at, making pin cushions out of my upper appendages. As the hot silent tears rolled down my face, the stress, pain, and frustration of the whole ordeal finally sinking in, Sister #3 climbs up on the bed, and wraps her arms around me. Sisters #1 and 2 look on as we all held hands and shared 'a moment'.

They have been incredible throughout this journey. Hours upon hours spent beside my bed, feet become many miles as Sister #1 drives me back and forth each time, and the feeble attempts to make me smile through the pain; these are my sisters.



Support the ones fighting and cheer for the ones supporting,

Ktr

Happy Anniversary to Me!!

To the ones that held my heart and forever changed me,

My last road trip on the African continent was to the city of Nairobi, Kenya. It brought a torrent of emotions that I will never be able to adequately express. After countless pulled muscles, and roughly 3 weeks of malaria; boxes were finally taped up, suitcases were zipped and farewells were bid. Eyes were bright with unshed tears, hearts were heavy with what would become a crushing weight, and smiles were pasted on as masks.

When I slowly got into the truck on that memorable Sunday morning I'll never forget MM as he looked through the window with tears in his eyes and said, 'Don't forget us.' I smiled and with tears rolling down my face, I gave my promise, 'Never.' With that he turned, walked down the driveway and opened the gate to all of our futures.

I began the long mental journey down memory lane. Memories and moments flashed through my mind like a song stuck on repeat. Moments that include, but are not limited to, hearing the prayers of EM, laughing with TM, crying with the MM family at the loss of their unborn child, eating the amazing food of Mama RM, and worshiping with NM are just a few of the countless memories that are the remnants of 3 incredible years of my life.

As I boarded the 777 headed west, my heart began to crack and by the time I had landed at Lambert International Airport, my heart was shattered to bits. With an array of emotions flooding through me, I threw on the first smile that I could grab and hugged the sisters close. My heart was torn in two; one part hurt, and one part joy.

One year ago, I left you all and began writing the continuing story of my life. I told you all when I left, 'Don't cry because my time here is over. Smile because of the time we shared.' Little did I know that those words would be hard to live by. If you must know, I have cried terribly... but I have also laughed hysterically, when remembering the moments that changed the course of my life.

MM, I wish you could know that I have kept my promise. Never forgetting, always remembering; I carry you all in my heart.

Letter Three

Dear Vera,

Where do I begin? It's November 3, 2010 and this journey started on September 14, so I have a bit of catching up to do. I'm going to warn you that this letter is going to be lengthy; perhaps you should know who I am. You could say that I'm an informant for people like you, meaning those that wonder what's going on and are to shy or polite to ask questions. I'm 19 and new to this path. This is my story.

The beginning of this journey was quite a shocker, although we had some suspisions. I have a sister that is in her third year of this journey, and we are very much alike. It was just a twinge, and could be ignored. Then came the 15th, and it was an ache. By the time Thursday rolled around, it was an incredible pain that could no longer be ignored. I called off work, went to the infamous Dr. D, and was put on bed rest. That was great, for all of 24 hours.


It was Friday, around 2pm that we decided to make the drive to MBMC. This place is legendary in our family because of Sister Two's journey. Doctors, nurses, technicians, and orderlies alike recognized Sisters One and Two. The people were incredible. After a few questions I was quickly ushered into a triage room where I was to spend the next seven hours. IVs, ultrasounds, and numerous pain meds later; they decide it was best that I stay the night to continue with tests in the morning. Saturday passed in a blur of pain. Sunday I was moved to a private room and it was Monday that I received the life changing, world crashing news that I was diagnosed with Stage Two Yellow.

The next morning,Tuesday, I had an operation to clean out my abdomen cavity from all the blood that was just hanging out in there. Friends and family alike gathered in the waiting room; visitors were a constant throughout the day. Dr. D said I cried through the whole operation; I don't remember a thing. I woke up and knew that I felt a thousand times better. My mom flew in Monday night, so she was there for the surgery and stayed with me for about a week. She was incredible, as were Sisters 1,2 & 3.

Call me crazy, but one week after surgery, I was on a plane headed to Houston. It was crazy and exhausting, but very much worth it! I saw a ton of my friends; old and new alike. I hadn't yet dealing with the side affects of all the medications, nor the emotional and mental battles that would later come. I think I'll leave that for another day.

Praying you won't have to deal with this,
Ktr

Letter Two

I've decided to start a new segment on this blog called 'Letters to Vera'.

They are to a girl, who will be known on this blog as, Vera. This new segment will be an upclose view into my journey of fighting the illness that changed my life on September 20, 2010.

Why, you might ask? Because every girl should know what this disease is like. Every girl, of every color, creed, race, and age needs to know that they aren't the only ones fighting this disease. In these letters, the disease in question will be known as Yellow. Yellow is a nasty disease that few know about; but those that do know about it, know the journey isn't a pleasant one. It's one filled with countless medications, hospital visitations, and it leaves a life long impression.

Every girl should have the opportunity and the means to fight. And fight I will.

Fight for those girls that don't have the strength to do it themselves. I will stand my ground. I'm fighting not only for my own battle against this, but for those that are writhing in pain; for the young one that had to make a decision, yes or no. For those who know, and for those who need to know more.

Letter One

It has been a quick but painful journey to this day. One month ago I was diagnosed with a degenerative disease that caused my world to crash. It's been a battle between the good days and the bad days, and to be honest, I'm not sure which side is winning right now. I'd like to think that the good days are, tho.

Do I understand all of this? No. Do I know how this is fitting into God's will for my life? No. Have I asked God what He is doing in all of this? Oh yes; right after I told Him I was angry at Him. Yes, I've been angry at God. but in the midst of it all, I still trust God. 
He knows how it is going to end, and He knows exactly how much I can handle this. He knew that I would need an incredible support system, so He gave me three amazing sisters. One of whom has already conquered this mountain. He knew that my parents wouldn't be able to be with me during all of this, so He gave me Papa and Mama H. He knew I would need wise medical staff to help diagnose and treat this disease, so He gave me the incredible Dr. DV & CO.

Each day brings a new set of situations that have to be dealt with and processed. It has become the Mt. Everest of my life. Each day I'm learning that this mountain must be climbed one step at a time, and I'm determined to conquer it. One day at a time.

OH! Hello again...

I'm sorry, I didn't notice you sitting there. I was too busy gathering the dust bunnies and removing the cobwebs from this page. It's been quite awhile since the last time I've posted on here.


I was re-reading some of my older posts, and a flood of memories washed over me. Memories of life changing moments,  memories I'm trying to shoo out the door of my mind, and memories that I long to hold onto forever, but with each passing day, slip from my grasp.

United States, to Canada, fast forward 10 years, and there we were traveling back in the states, went to Tanzania, which is not only a different country, it's on a different continent. Moved yet again to the US of A..... And now The Nomadic Parents have been transferred to....


POLAND!!


Yes, you read correctly. Po-land. You know, Land of Poles??? No? Ok, how about pollocks? Yeah? Yes!! So the path of my ever so interesting journey takes another mysterious twist. Did I mention we are Nomads?  So here we go again; packing up our lives' favorite memories, and starting a new journey. I can't wait to turn future memorable moments into incredible memories!

My Sacrifice of Praise

I was recently asked how it felt to be back in the States, knowing that I wouldn't be going back to Tanzania with my parents. Ever since then, I have asked myself over and over, What is it like to be back? What are all these emotions that I find myself facing from one moment to the next? And where did they come from?! So... to be completely honest, I don't know how I feel.

What I DO know is that the hole in my heart has slightly decreased in size, and I know that I still fight moments of feeling like a fish out of water. (Although I don't know what a fish feels when it gets out of water, I'm sure it would feel like I have felt in the past few months.) For those of you who have never experienced this, let me explain: It's like walking in the fog, and gasping for air, yet knowing you are breathing just fine.

Seriously, how does one stand in a church with keyboards, cushioned pews, choirs and all the 'normal' things that can be found in an American church and worship, when all I can hear in is the sound of a African drum? I think that has been one of the hardest things I've faced so far. To stand in such a 'normal' place, yet every part of my being is longing to be in a mud hut, to listen to the sound of bucket being beaten, to balance on a rickety bench, and just to be back in MY 'normal'.
Instead, I find that I'm going through the motions of 'church'. I stand with the congregation, I raise my hands, fumble my way through the latest 7-11 worship chorus and have a migraine headache due to the stench of perfume, that some dear soul decided to bathe in that morning. Going through the motions?! Yes - I admit there are times when going through the motions is all I can do, because going through the motions is alot easier to deal with than falling apart. Sometimes going through the motions is all I have to give. Sometimes I fail to find the words to pray, so I just close my eyes, and let my heart do the praying. Sometimes it is just easier to sit in the closet (Thank you Lord for a walk in closet) and let everything just fade away, rather than offer my sacrifice of praise.
During a recent church service, somebody told me, 'You are so African', and I wanted to fall apart and bawl my eyes out. Of course I'm African; Africa still makes my heart beat, it still brings a smile to my face, and still causes my eyes to flood; Africa is still the home of my heart. So I pulled out my 'This-Is-My-Happy-Face-Mask', dusted it off, tied it on with a pretty little bow and politely nodded, all the while falling apart on the inside. I quickly closed my eyes and continued fumbling my way through yet another song that I didn't know, and made the decision to offer my sacrifice of praise. My sacrifice of 'Lord I showed up today, so YOU need to do the same'. Yes, it hurt to smile, to stand and to sing, to offer this new normal as my sacrifice of praise.
Through the tears, and through the hurt, and as I try to figure out this new 'normal'...I praise.