Prayer Requests

I'm doing better today, although still a bit tired. I realized I didn't answer Jess's comment regarding prayer requests. Please pray concerning a job. The truth is I do have a few bills each month I need to pay, so I'm going to begin looking for and/or applying for a job. I know the Lord has more for me to do and I trust He will lead me to the right position in His timing. I'd like to work part time, so I don't overdo it. I'd also like to have my job related to child advocacy and/or families. If you hear of anything, please let me know! :-)

Another prayer request concerns a health issue. About three and a half weeks ago, I cut myself with my electric shaver. Since I can't see well, I didn't know what was happening until after the fact. Both legs were skinned up pretty badly. One leg is healing up pretty well. However, the other leg,which contains the majority of the cuts, is not healing. I've been to my PCP and hematologist regarding the matter. I now have a call into a local wound care doctor. Because of my disorder, my cells and platelets don't know how to heal correctly. In addition, the cuts have gotten infected and are quite sore. I've used liquid band aid called New Skin and a topical antibiotic ointment with little improvement.

I appreciate you continuing to keep my family and me in your prayers. Please know that even though I'm not in the hospital, I still have lots of time in which to pray for others. So, please share your requests in the form of a comment or email me privately. Together, we can lift each other up before Jesus Christ, who intercedes on our behalf to our Heavenly Father.

"Be devoted to one another in brotherly love. Honor one another above yourselves. Never be lacking in zeal, but keep your spiritual fervor, serving the Lord. Be joyful in hope, patient in affliction, faithful in prayer." ~Romans 12:10-12

Sick

I've been sick this weekend with a "mild" flu that has left me exhausted. I've spent the better part of yesterday and today in bed. Mom had this last weekend, but she's better now. It just takes time. Like my HPS friend Heather once said, "We aren't supposed to be sick with something so...normal". I actually think it's rather a relief to be sick with something I know I can get over with prayer, rest, and TLC. My family needs a break from another mysterious or complicated issue.

Remicade Day

Since I'm doing Remicade every six weeks now, I've stopped collecting my "out patient" hospital identification bracelets. Maybe I should have saved them, but somehow it is not as special as it once was. Now, I can't wait until I can get home, cut the bracelet off my arm, and throw it away.

Remicade Day, though, it still special. I use my black bag, although Mom can't do my toes anymore because I'm in a room full of other people getting their infusions. I don't think they'd appreciate the smell of nail polish remover! Still, Remicade Day is an event. Since I go to the same place each six weeks, I'm beginning to develop a friendship with the nursing staff. They were pleasantly surprised to see me walking in, instead of using the wheelchair. In addition, they enjoyed meeting Qavah, since they had only seen pictures of her. The infusion itself went well, although the IV hurt my arm quite a lot. I'm learning that's just a part of the process. My cells don't know what to do with anything foreign, including an IV.

I have a headache tonight due to the saline but that shall pass soon enough. It's just good to be home. I say that because I remember many Spring days spent in the hospital. Mom would would describe the beauty when she visited me, so I could image Spring and Summer in my mind. But it was never like experiencing the real thing. Today, on our car ride to the medical center, Mom pointed out the Red Buds that are beginning to bloom. It's a beautiful site indeed and one that makes my heart leap with joy! I praise the Lord for these "normal" days, that are really "extraordinary" to me!

Exciting Days!

I apologize to those people whom I've emailed the last few days. I really do know how to use my spell checker! However, my large print keyboard decided to stop working on Sunday night. This has happened in the past and usually it starts to work within a few hours, so I decided to wait. Well, after two days of the letters missing in action, I switched keyboards. This is also why I haven't updated this website until today. As my friend said today, computers are wonderful when they work. Thankfully, it wasn't anything more serious than climbing under the desk and switching out the wires.

On a happier note, I am now officially finished with my Senior Seminar aka senior thesis! I had my phone "presentation" today. I talked with my instructor for forty-five minutes. I actually enjoyed our conversation, because she asked me some really good, critical thinking questions. Toward the end of the phone call, she gave me a chance to ask her some questions. I asked her to recommend what I should write on a resume cover letter. She said I should emphasize that my degree was a classical, liberal arts degree that taught critical thinking, research skills, writing, evaluating, policy making, and teaching. She said that people need to realize that I can do more with my degree than just work in some bureaucratic government office (which I might do, too). My instructor also said how pleased she was with how I involved my family and friends, because "it's one thing to have knowledge, but if you can't teach it, use it, or help others with what you know, than it's not worthwhile". Finally, she commented that my thesis compared "favorably" with past research papers. I was especially thankful with that remark, because it was a challenge to write a research paper distance learning without having the ability to review previous theses, which other distance learning and residential students typically do. I give God the glory for how well this paper was written, for having the mental capability to research, and for having the strength to finish my degree! I really have loved my education at Mary Baldwin College and I look forward to how God is going to use everything I've learned.

I wrote in my previous post that I had an exciting Easter weekend. I finally uploaded my pictures, so now I can tell you why. My grandparents arrived on Friday night for an overnight visit. They brought my harp with them! To my surprise, they had already placed the strings on the harp, so it was ready for me to play. After building a harp, the musician needs to tune it three times a day for a month until everything settles, so I was not able to keep the harp with this visit. Although I miss the harp now, that fact didn't take away from the enjoyment of seeing it and playing it for the first time! The harp is absolutely beautiful; the wood is rich, honey color. My grandparents really took their time and paid careful attention to details when building the harp. Thus, it's more than an instrument. I told Mom that the harp is a show piece, because the craftsmanship on it was done so well. Thank you, Granddaddy and Grandmom! Below are some pictures:

Happy Easter

Thank you for the many congratulatory comments regarding the completion of my thesis. This Tuesday, I have a phone interview with my instructor and then I'll be done with the class. In other news, it has been an exciting and busy weekend! I will write more about that in a future post...

Since tomorrow is Easter Sunday, I wanted to share a holiday message in the form of a Michael Card song. Below is a YouTube video of Love Crucified Arose. There's a small introduction before the song. However, the song lyrics are relevant to the hope Christians celebrate at Easter. Praise to the "Risen One in splendor," because "He has won the victory"!

Love Crucified Arose
Michael Card

Long ago He blessed the earth
Born older than the years
And in the stall a cross He saw
Through the first of many tears
A life of homeless wandering
Cast out in sorrow's way
The Shepherd seeking for the lost
His life, the price He paid

Love crucified, arose
The Risen One in splendor
Jehovah soul Defender
Has won the victory
Love crucified, arose
And the grave became a place of hope
For the heart that sin and sorrow broke
Is beating once again

Throughout Your life You felt the weight
Of what You'd come to give
To drink for us that crimson cup
So we might really live
At last the time to love and die
The dark appointed day
That one forsaken moment
When Your Father turned His face away

Love crucified, arose
The One who lived and died for me
Was Satan's nail-pierced casualty
Now He's breathing once again
Love crucified, arose
And the grave became a place of hope
For the heart that sin and sorrow broke
Is beating once again

Busy Tuesday

I slept in this morning, but have been moving ever since. It is now 10:00 PM and I'm exhausted. I had a productive day, though.

After sending another draft of my thesis to my instructor, I talked with her at length this morning. She clarified her expectations and answered my questions. She requested an additional chapter, which I wrote this afternoon after my doctor's appointment. Mom and Dad checked the thesis this evening, so I've already emailed it to my instructor. Hopefully, I'm almost complete with the writing process! To my surprise, my instructor said she allows Adult Degree Program (ADP) students to do their oral presentation over the phone. I'm so relieved, because I was not looking forward to traveling to the Staunton campus for that one requirement. Mary Baldwin College is beautiful, but my health is unpredictable when traveling.

In other news, my GI appointment went well and was rather routine. My doctor and his wife have been home from Russia for two weeks with their newly adopted children. Their family is doing well, the oldest children are already in school with tutors, and the toddler is home with her new mommy. The parents are exhausted! Isn't that how it usually is?

While we did discuss my health and optional treatments should something go awry, it was pleasant to talk of non-medical things. Sometimes when I have a good appointment, I realize just how much of my life and energy is spent on HPS-related matters. Even when my body is functionally as normally as possible, I still have a plethora of medicines to digest and issues to monitor. Sometimes, I want to put my hands over my ears and shout, "Enough already!"

Last Friday, I got more mail than anyone else in our household. That was a rare treat! I got two bills, which of course wasn't fun. I also go a postcard from Wyoming. I'm slowly adding to my United States' scrapbook. I'm trying to gather a coin and postcard from each state. The other piece of mail I received was a letter from my grandparents. They even included two updated pictures of my harp! I'm posting the pictures below. The harp color resembles "honey". I think my grandparents may bring the harp this Friday, so Paul Burton can put the strings on it.

Grand Rounds

Thank you for your recent prayers. I was able to speak at Grand Rounds with one of my doctors, Dr. Del Short, even though I didn't have much sleep the night before. We spoke from 12:00-1:00pm to a group of psychologists, psychiatrists, and residents. As with the other Grand Rounds, Dr. Short and I discussed my HPS diagnosis, common mistakes made in the medical field, and doctor-patient communication. Mom was also able to talk from her perspective as a parent and caregiver.

This particular group was alert and asked good questions! As I shared my testimony, I was amazed once again at how faithful the Lord has been in directing my family through this journey. It was heart wrenching to relive some of the mistakes and serious moments of the past two years, but then it was a joy to "brag" on my current team of doctors. Below are two pictures.

The Grand Round's group: Since it was lunch hour, food was brought in for the attendees. It was "difficult" to speak to these people while they ate, especially since I had taken extra Prednisone the night before! Fortunately, they saved some food for me to enjoy once Grand Rounds was over.

Dr. Del Short and me: Dr. Short and I are already planning on my return for future Grand Rounds.

Health Update

It's been a long week health-wise. First, was the ear canal bleeding. Then, more bleeding on various parts of my body. To tell you the truth, it was quite frightening to me because, up until now, I haven't had too much trouble with the bleeding issues of HPS; I've dealt more with the GI tract than anything. I started taking Stimate last Friday. It helped, but the third dose I took Sunday morning threw my body off balance. Last night, I did not sleep at all (that makes three nights in the last week). Mom read the Stimate side effects' pamphlet this morning and it stated that extremely low blood pressure and abdominal cramping can occur for people with electrolyte imbalance issues. Go figure!

Tonight, I seem to be somewhat on the upswing of things, although I did have pain after eating dinner. Actually, I could only eat a few bites, which was disappointing because, Mom had made some delicious fish and noodles. I felt bad I couldn't eat it after all the trouble she went through to make it. I'm hoping and praying I feel better tomorrow (Thursday), because it's time for Grand Rounds again. This session, I'll be talking to a team of psychiatrists, psychologists, and residents going into those respective fields. Grand Rounds begins at noon. I've been looking forward to this event for months. So, please pray I can attend and that the Lord will give me the words to say. I want glorify Him in what I share.

Qavah went with Mom and me to my PCP appointment this morning. Guess what?? The nurse gave her two stickers! And Qavah wasn't even the one that got labs done or poked and prodded! I told Mom, half jokingly and half seriously, "They sure make visiting the doctor for pediatric patients more fun than for adults. I wish I was under 18 years of age again!" Monday when I visited the hematologist, Qavah was adored by the nurses and got extra candy. Aaah, the joys of being the youngest! :-)

Thesis and Memories of Diagnosis

I just e-mailed the Senior Thesis draft to my instructor...about two weeks ahead of schedule. Yay! I really appreciate all of the help and prayers. It's been a joy to work this assignment, although I'm glad I'm finished with the first draft. By this afternoon, I was ready to move onto something else. I managed to write thirty pages, not counting the Bibliography. I told Mom yesterday about the "Distinction in Political Science" award that is given to one graduate each Spring that displays outstanding knowledge in the field. The award is based on the thesis and grades. I did not write to earn the award, but it sure would be "icing on the cake" if I got it. If I get an A on my senior thesis, I should graduate with a 3.7 GPA.

Several times this week, my thoughts have turned to Elizaira's home-going and her immediate family. She leaves behind a devoted husband and two beautiful daughters, ages four and six. It was a sobering realization to learn that Elizaira was only twenty-nine when she died. As I prayed for her family, I couldn't help but remember the day I "discovered" I had Hermansky-Pudlak Syndrome.

Ironically, the day I knew I had HPS was not when the blood tests confirmed the diagnosis, but several days earlier. It was a warm, August afternoon. Mom was with me. I had just awaken from a nap. I was in my room at Roanoke Memorial Hospital. As Mom and I talked, Dr. Davenport and her resident, who were managing my care at the time, came into the room. We caught up. Suddenly, Dr. Davenport asked me, "Did you hear the results of the pathology report on the yellow fluid we found in your pelvic cavity during the Appendectomy?" She went on to explain that the results stated the yellow fluid was ceroid, a waxy like substance produced in the abdominal cavity of those with HPS. With that one pathology result, while not the official diagnosis, I knew I had HPS.

My life was going to be changed forever. As Dr. Davenport spoke, I had the film reel of my entire life flash in my mind. So many of the "mystery" bruises, stomach pain, and fatigue I had growing up finally made sense. Puzzle pieces started falling into place. I remember trying to fight back tears; I was determined not to cry in front of the doctor and resident. After they left the my hospital room, I had a "good cry" that released all of the negative feelings I had penned up inside. After crying, I remember thinking to myself, "God is in control. Now, I just need to accept this and move on." Because I had already "grieved," God gave me the grace to actually comfort Mom when the blood test results officially diagnosed me with Hermansky-Pudlak Syndrome.

Progress

I will hopefully write more later. However, I wanted to thank you for your prayers and well-wishes regarding my senior thesis. Every time I sit down to write, I "feel" the Lord giving me the words to type. I'm about to finish my Bibliography. I have several friends who have offered to edit the paper for me, in addition to my parents and grandparents. I figured the best way to have my paper edited is to give it to people who are not familiar with political science and/or community notification laws. That way they can judge the paper on clarity, as well as grammar.