Remicade Day

Thank you for the comments on the last journal entry. I really enjoyed reading them and am grinning from ear to ear as I type tonight's post. I think tonight's report will encourage you. If I could jump up and down and type at the same time, I would do so. This was the best Remicade Day I've had since beginning the treatments in April of 2007! Paul Burton was able to drop me off at the hospital on his way to work. This meant that Mom and Qavah could enjoy a leisurely morning without rushing to leave the house on time. Mom was also able to get some laundry accomplished. Meanwhile, I bought a cup of coffee from the hospital's cafe and then headed to the infusion room.

There are several nurses that "know" my veins really well, so it took only one stick to get the needle into my arm. In the past, it's taken twenty to forty minutes for the pharmacy to deliver my Remicade medicine. Today, I only had to wait ten minutes. That meant less saline going into my veins, which is better for my over all health. And because I took a Benadryl before the Remicade treatment began, I didn't experience the burning vein sensation that I've had in the past. So, the nurse sped up the infusion process without me having any discomfort.

I passed the time by using my MP3 player and sleeping. It took exactly two hours for all of the Remicade to go into my vein. I called Mom when I was finished with the treatment, so she could pick me up. I was done by early afternoon, and although I had packed a few snacks, I left the hospital very hungry! Mom, Qavah, and I celebrated the good day by eating at the local Waffle House diner.

I really need to get a picture of the infusion room where I get the Remicade treatment, because it's very organized, clean, and cheerful. I have developed a friendship with the nurses, so they always ask about my family and life in general. Some of them even remembered Qavah by name and asked how she was doing. I took a picture of me playing my harp for the nurses to see, so I got to "brag" on my grandparents. That was fun. Tonight, I'm a bit tired but otherwise feeling better than I have in the last week. Very little pain and no complications sums up today's Remicade Day. Praise the Lord!

Wednesday's Writings

My health is staying stable at the moment. I've gotten the bacteria overgrowth under control again, although I'm learning that it's something I must constantly monitor. This afternoon, I exclaimed to Mom, "It's the day before Remicade and my ears don't even hurt!" Tonight at dinner, Dad said how wonderful it was that I could join the family at the table. Of course, I notice the signs that my Remicade treatment is needed, but they're small symptoms that I can tolerate pretty well. I do have some skin peeling and GI issues, but not as much inflammation as usual.

Before this week, I had actually started to get lazy with my meal habits. I was consuming too much food at one sitting. This week's smaller eating proportions and spreading the meals throughout the day is actually what I should be doing all of the time. When I begin to feel well physically, then I get complacent with my meal management. I forget my pancreas sensitivity and that I don't have a gall bladder. Indulging on food is not beneficial to a person with Crohn's, much less HPS, in the long run. Better to be sensible now than sorry later. Easier to type that statement than to live it, though! (I think there's a sermon parallel to our spiritual lives with this paragraph. *grins*)

Last night, I stamped cards all evening until bedtime! My little office, Jane Austen desk, and bed make a perfect place to spread out my scrapbooking materials. I enjoy how easy clean up is, too. I looked through a previous Stampin Up catalogue for inspiration before beginning my card making. That was a lot of fun! Tonight, I reorganized my under-the-bed scrapbooking bin. It was just too cluttery for me to easily use.

Below are pictures of three of the seven cards I designed. I can't show you all of the cards even though I scanned them, because they will be mailed to website readers in the near future. I want my friends to be surprised with their cards. Hope you enjoy these pictures, though. The verse on the last card reads, "To everything there is a season and a time to every purpose under the heaven" (Ecclesiates 3:1). Thank you for your continued prayers, especially as the "season" for Remicade Day neared!

Monday's Medical Musing

My lower back started hurting on Saturday, which is a sign that the pancreas is irritated and inflamed. Increasing the steroid dose further taxes the pancreas. The Crohn's symptoms also started to occur on Sunday afternoon. By the time I went to bed last night, I had a lot of abdominal pain; I thought I had a long week ahead. What I forgot last night was how wonderfully and powerfully our Lord works.

I'm tired right now, but it's been a relatively good day considering I need a Remicade treatment. I was able to get out of bed, attend an appointment, and go out tonight. I also thought I would have to stop eating altogether until Thursday, but I was able to have some baby food today with minimal discomfort. I can only have a few tablespoons at a time and I have to eat it throughout the day, instead of all at one meal. I've actually tried to stay away from the kitchen, so I'm not tempted to snack. It's difficult to be so disciplined and intentional, but as with most things in life, the benefits outweigh the temporary cost. My abdominal and back pain are less tonight than yesterday.

There is a new Kroger supermarket right near our home that just opened last week. It is a clean, inviting store with three isles devoted to natural foods. Tonight, I went there to shop with Dad and Qavah. I only bought "necessities" like baby food, allergy medicine, and shaving cream. However, I came home very grateful. The days of being on TPN are still fresh in my mind, thus I'm just happy that I could still eat something nutritious and delicious today. That in of itself is an answer to prayer. And I can now recommend the stage three chicken, vegetable baby food meal. Tomorrow, I'll try the stage three chicken noodle dinner.

My new harp wrench arrived in the mail this afternoon, but I've been too busy all day to try it out. So, I'm going to go play some music now. Tomorrow, I'm hoping to stamp a few cards. I bought a new stamp set that I'm wanting to try. I would also like to start the scrapbook of my Arizona trip. I guess I'm just in a creative mood and keeping busy helps pass the time until Remicade Day.

Sisters' Get Together

Last summer, my friend Fairlight said to me, "When Qavah arrives, I want our sisters to have a play-time together". I thought that was a brilliant idea. Fairlight's sister, Mercy Rose, is almost exactly a year older than Qavah, but she was also adopted into a Christian home.

Over the past twelve months, Fairlight and I have chosen a date for our Sisters' Night Out seven different times, but we had to always postpone it due to my health. Last night, we finally had our long awaited visit! Mom and Dad spent the evening having dinner out and shopping together, while Fairlight and I enjoyed watching our sisters interact with each other.

Qavah, Mercy Rose, and Fairlight. The girls spent an hour playing on the swing set:

All of that swinging made the girls hungry! So, they had a picnic together on the top porch. Their baskets were filled with two peanut butter sandwiches, chocolate milk, raisins, a tangerine, animal cookies, bubbles, and a seashell. Fairlight and I took turns reading stories to our sisters while they ate their dinners:

The story Fairlight read to the girls was about a sister and brother bunny who got an invitation in the mail to attend a picnic in their backyard. So for the girls' craft time, we helped Qavah and Mercy Rose write a letter:

Both Qavah and Mercy Rose were very well behaved as they played together:

Before heading home, the girls enjoyed one last surprise. Everyone piled onto my bed to watch two Bible videos that Qavah had gotten for her Birthday. Then, Qavah said her good-byes:

Fairlight and I are good friends, so we feel extra joyful that the Lord "expanded" our friendship to include our two younger sisters as well. It just was such a treat for me to feel well enough to have company again. I've been grinning huge smiles today every time I remember last night. And Qavah has mentioned Mercy Rose several times, too. There were so many happy memories made. I look forward to more Sisters' Nights Out with Fairlight, Mercy Rose, and Qavah:

Medicine Tray

First, a quick health update. Considering it's the week before Remicade, I'm doing very well. I've had energy, my ears don't hurt, and I've been able to get a few projects completed. However, I am still battling GI issues. I've had another bout of bacteria overgrowth and general Crohn's flare up. I took some Milk of Magnesia yesterday; that stuff is nasty tasting, but it's worth the taste if it works. I used to say the same thing about Prednisone and potassium, but now I'm used to the flavor. I did call my GI doctor yesterday, but he's on vacation until August fifth.

I have thirteen medicines in the morning, two mid-day, and five in the evening (counting vitamins) that I take daily. And on Tuesday and Wednesday, I have the additional Methotrexate dosage. That's a lot of medicines to keep track of and remember everyday. Then, there's the inevitable problem of dropping pills onto the floor by mistake. It was a real problem and source of frustration until about a month ago when Mom came to the rescue with a grea idea.

We bought a plastic lunch tray from the dollar store. I was sure to pick a solid color that didn't match any of the medicine pills. Then, I typed and printed the names of each medicine onto individual mailing labels. After sticking the labels to the lunch tray, clear tape was added to protect them from water and dirt. Voila! I now have my own, organized medicine tray. I highly recommend making and using a medicine tray like mine. I prefer mine to those plastic, square medicine compartments that's divided by the week. I can see the medicines on the tray better and it's easier to reach the pills than those tiny compartments. The right side of the tray is for morning medicines. Then, there's a section for mid-day pills and another one for nighttime medications. The final section is for the Methotrexate. This medicine tray is a great tool... thanks, Mom!

The Dog Days of Summer

A few days ago, Mom mentioned to me the phrase "The dogs days of summer," referring to the weather outside. Today was definitely one of those days! It was a hot, ninety-six degrees this afternoon with full sun and humidity. I still would prefer the heat to winter time cold, though. It just meant a slow start to the day and combining errands. While we were out, we had a late lunch, early dinner (depending on how you look at it) at the local Mexican restaurant. I was really in the mood for a taco and, thankfully for my Prednisone mind, I was well enough to enjoy one. We shared a meal and dessert, so the portion sizes were smaller; I'm trying not to work my pancreas too hard. Sometimes after a meal, Qavah and I will say to each other for pure fun, "Yummy Tummy" or "Happy Belly". That is how I left the restaurant today!

Well, speaking of the "Dog days of summer," here are a few random pictures of Ellie. It's hard to believe we've had her eleven years! We took her to the groomer last week and the woman pointed to the dog she was working on, saying "He is fourteen years old, but the poor dog has arthritis and isn't in the best of health". Mom then told her that Ellie was the same age as the that dog. The groomer was very surprised.

The other day, I observed Qavah and Ellie playing together. Ellie had a "sweater" (blanket) on her back and she was being led into the pop-up school bus, all the while wagging her tail. I smiled and said to myself "That is one patient dog!" Of course, Ellie is not always that good when she's hungry (who is??) but she does very well with children and she's still calmer than most large dogs I've seen. I don't know how much longer she'll live, but over the eleven years we've had her, I've come to realize why they say dogs are "Man's best friend". Right now, our family is able to enjoy the "dog days of summer" with a new perspective and appreciation, thanks to Ellie.

Sunday Night

It has been a wonderful weekend, but just very busy. The recent lack of sleep at night is finally catching up with me. Thus, this is just a short update; I plan to go to bed very soon! I just thought some readers might be worried since I haven't done a health post for a few days. I did experience some GI bleeding today, so I am planning to call the doctor in the morning. I also plan to taper the Prednisolone again from 17mg to 15mg, starting Monday morning. Other than that, I've been "up and around" this weekend. The Lord has been gracious enough to give me strength so I could attend some fun events this weekend. I'll write more soon.

Birthday Celebration

Dear Qavah,

Your Birthday may be over for another twelve months, but the celebration of your life is not. Below is a video to honor the first five years of your life. It is a prayer of blessing. You bring so much joy to our family. I love you!

Your Sister,
Kathryn


Qavah: First Five Years from Kathryn Campbell on Vimeo.

P.S. Visit the Campbell Family Journal website to read Mom's post about the "Most Important Thing" related to Qavah's Birthday and life. I had an absolutely wonderful day! My health was "near perfect". I also had my harp lesson, which went very well and was a lot of fun. I now have music homework, mainly consisting of practicing scales and memorizing the location of the notes on the harp. Tonight, I worked on Qavah's video.

Well, considering it is 1:00 A.M., I guess I better head to bed! I've been up since 6:30 A.M. on only three hours of sleep (yesterday was not a good day at all). I'm just grateful I was able to join in Qavah's Birthday festivities with strength and joy! It has been a happy day full of memory-making. Like I sometimes tell Qavah when we're saying goodnight to each other, "I'll see you [tomorrow] when the sunshine comes!"

He is Able

Two years ago today, I had a laparoscopic appendectomy done in hopes of removing the extreme abdominal pain that had hospitalized me the day before. At the time of surgery, a yellowish substance was cleaned off my pelvic floor, although bleeding was minimal. The surgery appeared successful and I went home a day later. Little did I know that my family's life was about to change forever. Two weeks later, I would re-enter the hospital, and after days of unanswered questions, the Lord would lead my mom to the diagnosis. Additional blood work and tests confirmed her suspicions. Hermansky-Pudlak Syndrome, a rare, genetic platelet dysfunction. The prognosis? Progressive and terminal. A disease with no cure.

A year ago today, I was at Roanoke Memorial Hospital on a BiPap machine due to respitory alkalosis. The doctors and my family were just beginning to understand the symptoms and long term effects of extreme pain on the adrenal system. The abdominal pain I was experiencing at the time had taxed my adrenal system long enough and it began to shut down. Last July, I had a completely different medical team than I do now; some of those doctors paid attention to me, while others ignored the warning signs and chose not to believe the Lord's directions. In addition, I was on Imuran to keep my cells from attacking each other. However, the drug was not working and, instead, caused chronic pacreatitis. The information about bacteria overgrowth, stimate, methotrexate, xifaxan, and ursodiol had yet to be discovered and tried. At home Dad was job hunting while Mom spent her days caring for me and preparing for Qavah's arrival. Colin and Jennifer only had eight-month-old Annelise with no knowledge that she would be a big sister just a year later.

Luke 1:37 states, "For nothing is impossible with God". In these two years, only the Lord has been able to keep my family going. Just when we thought it was "over," the Lord surprised us again with His "impossible" answers to countless prayers. He is the God who used a website to unite hundreds of people together in supporting one family during their deepest trials. He is the Great Physician who led me to an excellent medical team and treatments that work. He is the Lord who used one adopted daughter's disease to give her parents enough experience and self-confidence to provide another medically--fragile foster care child a permanent home. Who is He that has given emotional, mental, and physical directions when medical intervention did not suffice? Who is He that has given my family joy out of sorrow? It is the Lord, strong and mighty! Even though He has not always "chosen to work in the way I prayed," these past two years have given me the confidence that He is able to keep me in the palm of His hand until he leads me home to Heaven.

He is Able
Deborah Klassen

Like peering through a window blurred with rain.
Emotions run together in a flood of doubt and pain.
We've prayed as best as we can.
Now we must leave it in His hands.

Yet I know when my eyes fail to see, He is able
And even though it seems impossible to me, He is able.
If He chooses not to move in the way we prayed He would,
confident He's working all together for my good,
I will stand behind His word.
For He is able.

Questions seem to haunt us night and day.
How could God allow my heart be torn this way?
Does He listen when I call?
Is He even there at all?

Yet I know when my eyes fail to see, He is able
And even though it seems impossible to me, He is able.
If He chooses not to move in the way we prayed He would,
confident He's working all together for my good,
I will stand behind His word.
For He is able

I will stand behind His word.
For He is able
He is able.

As the night turns into dawning and evaporates away,
I stand to face another day,
I will stand behind His word.
For He is able.

Christmas in July

I've heard the phrase "Christmas in July" before, but I never knew what it really meant. So, I decided to research the subject using Wikipedia. Here's what I discovered:

"Christmas in July is an event which is unofficially celebrated as a holiday by people. It is especially popular among the young people. A Christmas in July dinner usually includes Christmas Decorations Christmas Candles, colorful streamers, bonbons, Christmas hats and whistles. During the summer months in the northern hemisphere, the weather becomes increasingly warm and many people crave for the atmosphere of cooler temperatures, gift giving, and holiday spirit. To satisfy this craving, some people throw parties during the month of July that mimic the holiday of Christmas."

Recently, I have either bought or have been given some neat items. I wanted to post pictures of these items online, but didn't know how to combine the information into one post that made sense. That's when my thoughts first turned toward "Christmas in July". All of these "gifts" reminded me of Christmas time...only in July instead of December. The pictures with the stories behind each item is shown below.

About three weeks ago, I stopped at Whitney's house to pick up something when she said to me, "Oh by the way, I have a student that uses a harp tuner that I think you could use. It's easy to read". She gave me the particulars and so I went with Paul Burton on the way home to look at the tuner. It was easy to see and operate, so I bought it. Dad wrote down the music notes in my spiral notebook, so I wouldn't tune my harp to the wrong key. However, thanks to Whitney, I'm now able to tune my own harp!

Since starting Boniva, I've been discussing with Mom and Dad the need for me to exercise, particularly walking. My doctors have also mentioned it to me at recent appointments. I don't have a paved street on which to power walk, because I don't live in a neighborhood. So, last week on his lunch hour, Dad shopped at a nearby Salvation Army store and found an exercise bike for me. The bike cost was only $10.00 and, since it's miniature in size, it doesn't take up a lot of space. I've enjoyed using this exercise bike everyday. Thank you, Dad!

Back on March 12, Mom did a post (on the Campbell Family Journal website) about the Spring weather. She had a photograph of Qavah and me picking yellow flowers in a field near our house. Well, as a graduation gift, my sister-in-law Jennifer made the photograph into a painting using oil pastels. Mom and I got the new painting framed. We also had Whitney's mother, Mrs. Dobyns, use her calligraphy skills to title the painting, "Sisters". The painting is really beautiful. When I look at Jennifer's artwork, I'm also reminded of the many answers to prayer the painting symbolizes. I've hung this artwork in our eating area, so Qavah and I can glance at it during family dinners. Thank you to Colin and Jennifer for a graduation gift that is a personal, yet meaningful, keepsake.

Weekend Re-Cap

It has been a great weekend, full of better health and fun memories. Yesterday, Mom, Qavah, and I went shopping. We went to Petsmart to buy some dog food and outside of the store were some dogs for sale. The owner would let children go "inside" of the caged area to pet the dogs. Qavah surprised Mom and me by asking if she could pet the dogs. Definitely a camera moment!

Then, we went to the local mall and discovered a children's play center located inside the mall. It was a "jungle" theme with plastic animals that children could climb over or ride. Mom and I sat down on the parents' benches for awhile, so Qavah could play. Qavah kept asking me to play with her, but I was reluctant, because I didn't feel like taking my shoes off and I wanted to conserve my energy. Finally, however, I decided to climb on at least one animal with her, so Mom could get a picture. It was actually fun! Then, at one store, I saw a friend of mine shopping with her mother. We had just been emailing each other with possible dates of when to take our younger sisters for a "girls night out". This friend reads the websites regularly and prays diligently, but she never had the opportunity to meet Qavah until yesterday. It was a spontaneous, yet joyful, moment that I knew was ordained by the Lord.

Last night, Paul Burton and we girls went to his "apartment" (on our property - a converted, finished garage) to watch Bella. PB hadn't seen the movie yet, but unfortunately, Dad couldn't join us because he had work to do at the shop. Anyway, we watched the movie using PB's projector, and empty white wall, so the movie screen was extra large. It was a similar experience to watching movies at a theatre, only there wasn't the occasional rowdy child or cell phone ringing loudly. Also, we sat on PB's day bed, so we were more comfortable. Thanks, bro!

On Friday, we had some corn on the cob that Dad brought home from work. Corn still bothers my stomach, so I simply sucked on the kernels for awhile and then spit them out. Qavah, however, loved the corn! She helped Mom and me "get the hairs off" (i.e. shucking and washing the corn) and then she stayed at the sink to eat her piece. It was fun watching her, because she was having pure delight. It took Qavah a long time, but she ate every kernel. I do have to say that while the experience was an "event," the corn wasn't as delicious as the kind we get from "Uncle" Les and "Aunt" Marcia in Michigan. They get the prize for the best corn ever.

This morning, I felt well enough to attend Church. Paul Burton sang a Fernando Ortega song titled Creation Song. Dad played his cello and the rest of the church music team accompanied him. Paul Burton sang like he truly believed the lyrics with all of his heart. And the cello added a dramatic affect to the words. It was one of those worship experiences that felt anointed by the Lord. There was even a "holy hush" when the song concluded. Below is a YouTube video of Creation Song set to beautiful scenery. May it be a blessing to you as you begin the new work week.

Friday Night

My health has been stable the last few days. What a praise! I will begin the Prednisone taper this weekend, though. I'll probably go down from 20mg to 15mg and then keep it there until I talk with the endocrinologist the beginning of next week. Please pray the tapering goes well. Another praise is that, the last two days, I've been able to sleep all night long. This has greatly helped in my over all health and sense of well-being.

Sorry for the short post! Hopefully, I'll write more later. However, Annelise and Nehemiah just got here, so our evening is about to get very busy and fun! Good-bye...

Wordless Wednesday

I organized the pictures folder on my computer this afternoon, so below this paragraph are some random photos I discovered. I also did some laundry and paperwork while Qavah was getting her transfusion at the hospital. Except for taking the weekly dose of Methotrexate, it was an uneventful day health wise. That is how I prefer it, too! Tonight, Mom and I are going to begin our next Beth Moore Bible study titled, "Jesus the One and Only".

This is Qavah with her friend, Lorien, enjoying the weather one Sunday in May:

This picture was taken back in March. Paul Burton is playing Qavah's cello like it is a violin:

Mom and Qavah admiring Nehemiah:

Nonny talking to the "Little Man:"

Mom, Helen, and Nehemiah. Helen is our friend from Ohio whose husband went home to Heaven two weeks ago:

Endocrinology Appointment

I'm just now settling in after a busy day. I had my endocrinology appointment this afternoon. The doctor listened well and even wanted to read the research papers my parents and I had printed regarding adrenal insufficiency. This doctor also requested that he receive frequent reports from my "medical team," so he can better monitor my progress and flare ups.

My adrenal system is permanently damaged, even more than the last time the endocrinologist saw me five months ago. Currently, there is not another drug I can take on a daily basis to compensate for my poorly functioning adrenal system other than Prednisone. He said the maintenance dose of Prednisone should be 5-10mg daily. However, when I have a "major stressful" event, my adrenal system will need additional help. He said "stressful events" include flare ups that last longer than a couple of days, any bone fractures, flying on an airplane (which he advised I do not try if at all possible), etc. During one of these stressful events, I will have no choice but to visit his office or the hospital for a blast of cortisone. The endocrinologist explained that for a healthy person my age, the adrenal system should be producing adrenaline (and other hormones) that equal taking 10-50mg of Prednisone a day". However, my adrenal system barely functions, so I should view Prednisone as a drug that will keep my body going, because I can no longer depend on my own adrenal system.

Stressful events make the adrenal system work harder and therefore additional "adrenaline" in the form of steroids like Prednisone and cortizone shots are necessary. My endocrinologist said that, had he known about the rib fracture, he would have ordered a cortisone blast right away. He told me that my body did not have enough adrenaline to heal from the rib fracture, keep inflammation minimal, go on a major trip where I flew, maintain other organ functions, and stay healthy. The rib fracture triggered a downward spiral. I've now switched to a liquid form of Prednisone in hopes that my body will absorb the medicine more effectively. I'm supposed to increase the Prednisone to 20mg (ml) for the rest of this week and then slowly taper back down to 5mg over the next two weeks. The endocrinologist also advised me to "break up" the Prednisone dosage, taking some in the morning and then later in the evening rather than taking the full dose at one time.

Thank you for the prayers regarding this appointment. It is disappointing to hear that my adrenal system is failing and the only answer for help- this side of Heaven- is Prednisone. I trust my endocrinologist; he's an older doctor with lots of experience, a quiet personality, and interested in me personally. I know he wants me to have a better life. He remembered that I was trying to finish college and asked me about it. I was amazed he remembered the details of my life when he has so many patients!

For two years, the Christians observing my journey have fervently prayed for better doctors who are humble, seek wisdom from the Lord, and want my life to be as positive as possible. Today's appointment was an answer to prayer. And I want to thank Martha R. for leaving a comment on the websites this morning. Our family needed the encouragement, especially the verses that she shared and prayed on our behalf. Sometimes I feel so alone in this battle but Martha's comments reminded me that there are readers out there who pray for my family that I don't even know. The road is long and difficult for me and I do need your prayers and love. However, I know we each have our pilgrimage with heartaches that beckon us to our Father's throne room. I leave you with a quote I saw at the doctor's office today, "Your journey might be difficult. But be kind and gentle to everyone you meet, because each person is fighting their own inner battle". May the Lord gives us all strength and resolve to keep fighting like Daniel, David, and Deborah as we go from "strength to strength".

Interesting Flower

It's been a slow, but eventful day around here. The extra calcium and vitamin D seems to be helping, although I have to take it several times throughout the day. Paul Burton recently bought our family a movie titled Bella, so we watched it together this morning. The movie was well done and very thought provoking. It also has an ending I was not expecting. I do recommend it.

This afternoon, Uncle Dan, Aunt Julie, Sandra (their oldest daughter), and her husband Joshua stopped by for a brief visit. That was fun! Then Mom, Qavah, and I were in the mood for Mexican food, so we went to the local restaurant for dinner. That was special and delicious! Now, I'm just having a quiet Saturday night doing some emailing and catch-up paperwork.

Below are some pictures my friends Candice and Crystal sent me. This Parrot Flower is native to Thailand, is a protected species, and thus not allowed to be exported. I thought it was fascinating enough to post on my website!

Independence Day

Happy 4th of July, Everyone! I hope you've had a joyful day celebrating the blessings God has bestowed upon the United States of America. Please remember to pray for our military troops and their families. I'm very thankful for the sacrifices they make, so I can live in freedom. And for Jesus who paid the ultimate sacrifice, so my soul could be free. There is never freedom without the shedding of blood...

Since it's a holiday, Dad had the day off of work. That's been nice. He spent most of the day mowing, but when I woke up, I saw him outside and that made me happy. We babysat Annelise overnight. I'm amazed at how much she comprehends verbally. Annelise calls Qavah, "vah," which is so cute, and chase her around the house. They are great playmates. I also got to see Nehemiah last night. He is almost two weeks old already. I like to call him "little man".

Well, I'm about to go catch another nap. I've had a rough few days with my bones aching. I think it's actually the Boniva rebuilding bone. That's exactly what it's supposed to do. The healing process just hurts and zaps my electrolytes. I've started taking extra calcium and vitamin D to hopefully avoid muscle tetany and lessen the pain. Everyone else is attending a picnic and going to see some fireworks later this evening... if it doesn't rain. It's rather cloudy and dismal outside. Mom told me not to be too disappointed about not attending the picnic. She said, "Just think of the bug bites you won't get"! I thought that was a good suggestion.

Another Health Update

Today was a better day than yesterday for which I'm thankful. Tonight, Paul Burton and I went shopping at Wal-Mart. I was able to get everything on my list. However, I'm most thankful for the energy I had to go shopping and for a brother who'd take me.

The weather was cooler today and less humid, so tonight I played on the swings with Qavah and Paul Burton. The wind rushed past my long "hair," and that was fun until this "hair" (my wig) flew straight off my head and into the grass. I said to Qavah and PB, "Guess my hair didn't want to swing anymore!" Everyone laughed.

I was able to talk with the nurse at the endocrinologist's office several times today. She was helpful and patient. She finally spoke with a doctor during his lunch break who had seen me once awhile back when I was in the hospital. Thus, he was familiar with my complex medical issues. After reviewing a current list of medications and lab work, he advised me take extra Prednisone until I see my regular endocrinologist next week. He said the extra Prednisone should counter the low sodium and adrenal issues. The dosage has been doubled of what I normally take, which is not my favorite course of action, but for now, I see no other way to make it through. And I pray it will continue to work the rest of this week.

Finally, I spoke with my primary care phsycian's referral nurse to begin the paperwork needed to set up an appointment with a pulmonologist. I saw one a year ago just before my hysterectomy where I took my first ever pulmonary function test (PFT). At that time, my lung capacity was at 73%. This PFT number became my baseline. However, because pulmonary fibrosis is a part of HPS, I'm supposed to have yearly PFTs done. And I wouldn't be surprised if that PFT number has gone down a bit within the last twelve months. Today's referral process is the first step in establishing a relationship with a pulmonologist that I'll probably have for several years to come.