Hello, Weekend!

Wow, it really is Friday night! The work week has finished, the house has been straightened, and all of the doctor appointments are over. As I look back on the last five days, I see the Lord's hand in every area of my life. For the time being, God is giving me the ability to carry on each day free from the kind of dehibilittating pain that messes up my electrolytes or puts me in the hospital. I had that kind of pain every day during my first year of living with active HPS. So I know what life could be like and therefore I'm more grateful for the good moments I experience right now.

I took my Methotrexate by "oral injection" on Wednesday night and this morning. So far, I have not dealt with any adverse side effects. Several people have asked what oral injection means. Basically, the medicine is in liquid form contained inside a little glass bottle that I keep refridgerated. The appropriate dosage is drawn up into a syringe. Finally, the syringe is released into the mouth, a glass of drinkable liquid, or given as a shot. With my Methotrexate, Mom releases the syringe into a small glass of cola. I used a spoon to disolve the medicine and then I just drink the cola. For some reason, the directions on the bottle say to take the Methotrexate with either orange juice or cola. Since I'm allergic to oranges, I have to use soda, which is perfectly fine with me. The liquid Methotrexate is yellow just like the pills, but it doesn't have a distinctive, nasty taste.

Yesterday was Remicade Day. That went well, because I took a Benadryl that made me very sleepy and lessened the pain from the saline. Infact I got a two hour nap while the infusion was taking place. Meanwhile, Mom and Qavah shopped nearby and then joined me near the end of my treatment. Now, unless something bad happens, I don't have another medical appointment until September eleventh.

Recap Of Doctor's Appointment

Thank you for the prayers and emails regarding my GI appointment. Prayers were answered in a way that amazed and blessed me. Mom joined me in case I had electrolyte issues, but thankfully, nothing eventful happened. On the way home, we were thanking the Lord for His faithfulness in honoring and answering our prayers.

While Mom and Qavah waited patiently for over an hour, I had my exam in a "procedure" room at he doctor's office. The two nurses that helped me were kind, calm, and thoroughly explained the procedures beforehand. The lower GI scope went better than expected and was productive. My GI doctor was able to detect what had been the source of the bowel bleeding and has given me directions of what to do over the next ten days to (hopefully) remedy the problems.

In addition to the actual exam, I also received results from last week's blood labs. My liver enzymes are elevated. My GI doctor wants to monitor levels by taking more blood work in a couple of weeks. Mom and I have a hunch that the liver enzymes may be elevated because I am not absorbing my Methotrexate which assists in keeping inflammation to a minimum. Inflammation may be blocking the bile duct which would be one reason my test results were high.

After consulting with my hematologist and working with a very understanding pharmacist, I'm going to try taking my Methotrexate in liquid form instead of swallowing pills. The labs I'll have in two weeks should also show if I'm absorbing the Methotrexate (and my other medications). For someone like me with absorption issues, liquid drugs are better than hard tablets. I take my first liquid dose of Methotrexate tomorrow evening when I return home from work.

True Religion

It is now the close of another Sabbath; today has been joyful, calm, and restful. I was blessed by the service at church - I love it whenever I can worship and learn about the Lord with other Christians who seek to follow Him in spirit and truth. Our family lunch was delicious (as always) and left me feeling satisfied for much of the day. I read and slept during the afternoon. Tonight was spent writing emails, talking to friends, and tidying up my bedroom. I'm now about to tune my harp before resting once again on my comfy, soft, green apple-colored sheets. The week ahead looks busy with work and three important doctor appointments (GI scope on Tuesday, Remicade on Thursday, and dentist on Friday). But for this present moment, I am very content.

Below is a prayer from The Valley of Vision titled True Religion that I read this afternoon. I was surprised at how appropriate the words were for the beginning of another week. I hope this prayer not only blesses you, but becomes yours' as well.

Lord God Almighty,

I ask not to be enrolled amongst the earthly great and rich,
but to be numbered with the spiritually blessed.

Make it my present, supreme, persevering concern
to obtain those blessings which are
spiritual in their nature,
eternal in their continuance,
satisfying in their possession.

Preserve me from a false estimate of the whole
or a part of my character;

May I pay regard to
my principles as well as my conduct,
my motives as well as my actions.

Help me
never to mistake the excitement of my passions
for the renewing of the Holy Spirit,
never to judge my religion by occasional
impressions and impulses, but by my
constant and prevailing disposition.

May my heart be right with thee,
and my life as becometh the gospel.

May I maintain a supreme regard to another
and better world,
and feel and confess myself a stranger
and a pilgrim here.

Afford me all the direction, defence, support,
and consolation my journey hence requires,
and grant me a mind stayed upon thee.

Give me large abundance of the supply of
the Spirit of Jesus,
that I may be prepared for every duty,
love thee in all my mercies,
submit to thee in every trial,
trust thee when walking in darkness,
have peace in thee amidst life’s changes.

Lord, I believe, help thou my unbelief
and uncertainties.

Amen.

Peace Despite Health Woes

Yesterday, I visited my GI doctor, because I've been experiencing intense pain, bloating, and intermittent bowel bleeding for the past four weeks. The end result of yesterday's visit is that I have yet another appointment scheduled for next Tuesday where my GI doctor will inspect my small intestine. If he doesn't find anything abnormal, then we'll wait until after my Remicade treatment to do further diagnostic testing or a colon cleanse. The hope is that the Remicade will correct everything that has gone awry. *sigh*

In addition to the recent doctor appointments, I've been fighting a mild sickness since Saturday. It's not exactly a cold or a flu, but a lighter combination of both. Fortunately, I've been able to work each day this week. That is cause for great praise to our Heavenly Father! As my Aunt Lil so appropriately exclaimed in a recent email to me, " It's wonderful that you have been able to do [so] well this Summer, with its ups and downs, but have also been able to keep working. That would have seemed totally impossible last Summer." She is exactly right! Looking back, I was not able to work, let alone imagine doing so while fighting a normal virus. Instead, I was getting over a fractured rib.

Over the last three years, I've seen how quickly circumstances can turn from good to bad to worse. However, I've also learned - more importantly- how readily available the Lord's strength is when I rely on Him. God daily lavishes His grace and mercy upon me in many ways! One example is the peace I have within my soul admist the recent health battles I'm faced. I know the calmness I'm experiencing comes only from my Heavenly Father. It's only Him that is keeping me from going insane with "what iffs" and "how tos".

"If God be our God, He will give us peace in trouble. When there is a storm without, He will make peace within. The world can create trouble in peace, but only God can create peace in trouble." -Thomas Watson

Health Update

It's been awhile since I've done a health update, so now is a good time. Over all, I am doing really well. This has been the "quietest" summer health wise since I was diagnosed with HPS three years ago. I have had small issues, but nothing that has kept me from work, enjoying company, and family festivties.

In the last two weeks, I have experienced on and off bowel bleeding. My GI doctor is aware of the issue, but for now, it's not serious enough to schedule a colonoscopy. When I visited my Hematologist this week for a routine visit, he said, "Well we know by now how HPS works. We could do all sorts of tests, but they probably would come out as being normal. Unless it gets worse, just keep living and don't worry about it. You can always call me if it gets to be serious, but I think you are okay right now." The only change in my medications is that my hematologist wants me to increase my Methotrexate to fourteen pills instead of twelve, resulting in a weekly dose of 40mg.

My summer respite from doctors has ended. The hematologist was seen on Thursday. Next Wednesday (August 12), I'm visiting a doctor to see about having some spots taken off my face. They aren't cancerous or anything like that, but they do get sore sometimes. My PCP made the referral after checking it out at my last appointment with him. On August 27, I have another Remicade treatment. A day later, I visit the "dentist" for a tooth cleaning and exam. Two weeks later, on September 11, I visit the Pulmonologist for my annual PFTs and routine exam. I also need to schedule an appointment with the opthamologist. At first they wanted to schedule my pulmonogy appointments for September 4th, but I told them I didn't want to do that on my Birthday. Fortunately the receoptionist understood. *grin*

Happy Birthday!

Since Aunt Julie willingly drives me to appointments (when I can't find a ride) and will not accept any gasoline money, I decided to dedicate this post in honor of her Birthday, which is today. Aunt Julie has a quiet spirit, but she manages to light up the room with her presence. Aunt Julie has a heart of mercy that bestows compassion at just the right moment.

Aunt Julie, Uncle Dan, and their family used to live in Ohio when I was young. So, I have many fond memories of spending a week at their home. Aunt Julie always made me feel welcome. Once they moved to Virginia, I was able to enjoy Aunt Julie even more. In the past few years especially, Aunt Julie has been a valuable source of comfort and helpfulness. She has been a "bed buddy" when I've been very sick and my family needed a break.

One of my favorite things about Aunt Julie is her gentle, but steady faith in the Lord. Recently, she has begun mentoring other ladies. They are blessed to have her for a teacher. The name Julie means "Youthful". That describes my Aunt Julie perfectly!

Aunt Julie with her family:

Aunt Julie loves children and it shows. Qavah and Aunt Julie exchanging giggles - pure delight!

Aunt Julie's favorite verse is Isaiah 40:31, "Those who hope in the LORD will renew their strength. They will they will run and not grow weary, they will walk and not be faint."

Happy Birthday!

Celebrating Life

This week has been filled with joyous celebrations of lives the Lord created, beginning with Eva's birth last Sunday. Our family took care of Annelise and Nehemiah until Jennifer's parents arrived on Wednesday.

Welcome little Eva! It's hard to believe you are already 1 week old:

Thursday, Uncle Todd and his family arrived. My male cousins enjoyed video games in Paul Burton's apartment, while the rest of us caught up over sips of coffee and tea. Then yesterday, our extended family celebrated Grandmom's Birthday a day early:

Thursday night, my mom and Aunt Judy - who both know how to sew- got the idea to make cushions for Grandmom's front patio furniture as her Birthday present. They were busy measuring and sewing when I went to bed. Amazingly though, the project was completed by the time my grandparents and two additional cousins arrived Friday mid-morning. We "modeled" the cushions for Grandmom using our upper porch swings:

Last night, we went to IHOP to celebrate my second-cousin Danae's 24th Birthday. Our presence was a complete surprise to Danae, who simply chose IHOP for the location of her Birthday dinner:

The party did not begin until 9:30pm, so it was a late night for all. Everyone got home before turning into pumpkins, but just barely! Aunt Julie (Danae's Mom) was gracious enough to let Qavah and I use her as a pillow when we got sleepy:

Needless to say, our home has been filled with much excitement and laughter over the past two weeks. The Lord has been merciful in giving Qavah and I strength to enjoy the festivities. Our family may work hard but we also play hard. The hours spent with extended family are blessed memories to cherish from the Giver of Life. I wouldn't want to spend my "good" days any other way!