Upcoming Surgery

God worked in awesome ways today!  My surgery date is scheduled for Friday, May 4 at 1pm (I'll have transfusions and platelets on that day, as well). The original date was for May 23. My pre-op tests (that I'm told lasts about 3 hours) takes place on May 1.   When I first learned of the original surgery date, my mother looked stunned and I burst into tears.  I couldn't help it - I'm so weary and couldn't imagine myself trying to live another month this way.  In addition to the pain, the oral pain medication has activated my Crohn's symptoms, making it so that I can only eat little bits of food a few times a day.  I've already lost ten pounds in one week.  

While the scheduler stepped out of the room, Mom prayed and called my father to ask him to pray.  After quite awhile, we could hear the surgeon and nurses making calls to my hematologists' office and working with other staff to find another surgery date.  When May 4 was announced, I felt relief inside.  I know the Lord will sustain me until then.  

For those who've asked, the plan right now is to replace the femur ball and remove any other "dead bone".  However, the surgeon said he suspects pressure build- up and deterioration of the surrounding cartilage, which would account for the severe pain.  As far as my leg circulation is concerned, he believes that I'm experiencing nerve spasms, again due to the pain.  If too much deterioration has taken place, then the surgeon will go ahead with doing a full hip replacement.  He won't really know until he is able to look inside my leg, how much bone has to be removed or replaced.  Either way, I may have a lot of relief right away and definitely more as my hip area heals.  In the end, after many weeks of recovery, I should be able to walk again! 

I so appreciate the prayers, cards, messages, visits, and other acts of love and friendship.  In fact, I'm designing a guest book journal, so that I can remember in years to come all of the kindnesses the Lord is showering me with right now by way of family and friends.

Pulmonary Appointment Update

There were good answers to prayer at Monday's pulmonary appointment, which went very well.  Thank you so much for praying!  I'm quite relieved with what my pulmonologist determined after reviewing the ct scans taken two weeks ago. The pulmonologist believes that most of my breathing troubles are related more to bronchial and asthma issues rather than a serious lung disease.  The ct scan also showed that I did not have advanced pulmonary fibrosis as we first thought.  Instead, I have "non-progressive pulmonary fibrosis".  Again, the low pulmonary function test result I had in January was most likely due to asthma.  The two focal lesions (spots) I had on my lungs three years ago are still there, but have not grown in size. Since the Qvar inhaler wasn't effective, I'm now trying Symbicort.  I have a follow-up appointment in two weeks.

Health Check

Good news! I was able to get my Remicade appointment rescheduled for tomorrow at 2pm instead of Wednesday. We are babysitting Annelise and Nehemiah tomorrow night, so I have something to look forward to also. Tonight, I watched Up with Qavah and it was a lot of fun. Now, it's time to sleep! Mom is feeling a little better today, as well. Thank you for your prayers.

Welcome To A New Week!

Health Check: I don't feel very good tonight. For most of the weekend, I've had trouble with pain, digestion, and other Crohn's symptoms. About a month ago, I rescheduled my treatment to November 25, because of a meeting at work and thinking that Mom would be in Ohio. However, it's now apparent that Mom is home and the sooner I can have a Remicade infusion the better. The good news is that I can still be "up and around." I do plan to call the Infusion Center first thing tomorrow morning to see if I can reschedule my appointment for sometime on Monday or Tuesday.

Other News: I received a joyous surprise early last week. On Tuesday night, I received the much anticipated book Going Rogue by Sarah Palin. The day it arrived in the mail, I had received a coupon from Barnes and Noble via email. So, on that same Tuesday morning as Mom drove me to work, I excitedly told her, "I have a coupon that's good for 40% off the Sarah Palin book, so maybe we can go shopping after work." Later that evening just before dinner, Dad picked up the mail and the book was on top of the stack. Mom and Dad had pre-ordered it from Amazon at a better price than if I had used my B&N coupon! All week, I've read a bit here and there as time allowed. The text is small, so I'm only on chapter 9, but it's definitely a wonderful read. I especially appreciate how Sarah Palin describes her faith and Conservative, family values. And on that note, I'm going to curl up beneath my warm covers and read until my eyelids grow heavy....

Recap Of Life

I know I have not updated in quite awhile. Truthfully, I haven't felt like writing online. Sometimes I think of a topic but for one reason or another I don't form my thoughts into a blog post. I love writing but my favorite method is by using the "old fashioned" pen and paper. I write best that way.

Generally speaking, my days have been busy with work, family, medical issues, babysitting, company, and remodeling projects. I stopped taking an antibiotic for a sinus infection after ten days of starting it. Since that time, I've continued using the Nettie Bottle and a humidifier. Sometimes all of the remedies help while other days I just live with it like any other person who has allergies. Next Wednesday, I'll have my Remicade infusion. This time, I'm already starting to notice that I need it.

In between all of the daily activities, I'm still piecing together my U.S.A. scrapbook. I have several states that need postcards and/or photographs. However, I think I've completed a little more than half of the fifty states. Although I've kept with the same color scheme throughout the entire scrapbook, I've tried to add personal and unique touches to each state. Thus, planning and decorating the individual pages has never become monotonous.

In regards to harp, I've stopped taking lessons, but I still enjoy playing on my own and attending various concerts. I know that I'll never be a true musician. So while I wish I had talent in that area, I'm content on not pressuring myself to achieve what is impossible on this side of Heaven.

Well, it is time to turn the computer off for the evening. I'll leave you with a Bible verse that I've been recently pondering in new ways:

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34

Numbering Our Days

Like Mom said, our family has been busy with house projects and babysitting little ones. I've enjoyed the action-packed days so much! The cobwebs of my mind are dusted out with each closet we clean and organize. Last week, I sorted through my Summer and Fall clothes. Mom did the same with Qavah's and together we have a big garbage bag full of clothes to drop off at Goodwill. Tonight, we went through our old VHS tapes and condensed our collection into a simple pile that would fit onto one small shelf of a rolling television cart. I did had fun remembering my childhood as I looked through the tapes. I ended up keeping the VHS of Lawrence Welk shows in hopes that Qavah would enjoy the singing and fancy dresses as much as I did at her age.

Last night, I had an allergic reaction to some food I ate for dinner and thus took some Benadryl. I think the drug was still in my system this morning, because I was rather groggy and achy when I woke up. My body had "run out of steam," so I stayed home from church. Instead, I listened to a few hymns on my mp3 player and then fell back into a deep, healing sleep until the rest of my family returned home. I felt better as the day unfolded. And except for some minor pain, my body is remarkably healthy tonight for being the night before Remicade Day. The Lord is gracious in providing me with so many bonus days that are filled with "holy moments."

Lord, may those who are reading this blog have a week filled with seven bonus days and many holy moments. We recommit our days to Your sovereignty. Thank you for ordaining our lives within Your perfect will. In Jesus Name, Amen.

A Change (Health Update)

It's amazing what a difference a day makes! Last night when I went to bed, I knew I needed to return to work but I was unsure if my body was ready for the responsibilities that would greet me. However, I woke up this morning feeling a lot better! The Lord gave me "unusual" strength to make it through the day with enough energy and very little pain.

Yesterday I called my PCP to explain that, even though the back of my head was more "firm," I was not feeling better through my forehead or behind my eyes. The doctor returned my call, stating that I probably had a sinus infection. He recommended using a saline nasal spray like 'Lil Noses instead of antibiotics. However, "Dr. Mom" had the idea to try a Neti bottle (similar to a Neti Pot). Sure enough, I was able to get a lot out of my nasal passages; it worked much better than any nasal spray I had tried before. So, if you have the "sniffles," a dry nose, or allergies, I recommend using a Neti Pot or Neti Bottle.

Despite the increased discomfort over the last few days, I continued to sense the presence of the Lord in our home. Neither Mom nor I felt panicked the night we lost sleep due to electrolyte issues. We knew God would direct our paths and reveal the health mysteries in His timing.

Think back to homes you visited where you stepped inside and felt welcomed. Maybe the air smelled clean and refreshing. Maybe there was a favorite meal being cooked in the kitchen. All you could do is step inside and say, "Aaah," with a deamenor of satisfaction and gratefulness. That is how I felt several times over the last few days as our family sought God for answers and relief. Despite the wars that raged in my physical body, my soul could rest.

A Good Week

Even though the season is now officially Fall, it doesn't feel like it today. The temperatures are in the upper eighties with plenty of sunshine and clear skies. I don't mind this weather one bit. Winter may be "just around the corner," but I'm already planning a trip to Florida when the weather turns cold and snowy here.

I am doing well health wise. Most of my mouth sores have healed. In addition to keeping my mouth extra clean, I've also been eating one spoonful of yogurt a day. I do have a doctor's appointment on Monday for labs. The hematologist wants to check my liver levels to see if they're in the "normal" range.

Tuesday night after dinner, we visited with Coin, Jennifer, and the children. Actually, it was Jennifer's birthday so we celebrated by bringing pumpkin pudding cake and presents to their home. Below are a few candid pictures.

Happy Birthday, Jennifer:

Jennifer preparing to blow out her Birthday candle:

Annelise will be three in November. I tried to get a nice picture of her, but she was having too much fun playing. Annelise has a plastic star in her mouth:

Nehemiah is fifteen months old:

Eva is almost two months old:

Jennifer decorated these pumpkins with special glitter paint. She got the idea from a Martha Stewart Living catalog:

I just like how this picture turned out with the candles shining:

Looking Up (Physically and Spiritually)

It has been a rough few days, but I'm praying and hoping that things continue to progress in a good direction. I still have some intense abdominal pain, but I do feel better then Friday when I went to the emergency room. Tonight, I did some more "investigating" via the internet. I visited several websites where people can write their experiences of different medical issues and remedies. Thrush is very common for those who use inhalers on a regular basis. I now remember my Aunt Judy mentioning this early last month when she visited our home, but unfortunately, her advice to rinse out my mouth after using an inhaler did not "stick". I also plan to cut back on my sugar intake. This is going to be a bit hard to do as I'm discovering how many things contain sugar. However, at least right now, the discomfort I've experienced over the weekend has been incentive enough to change my eating habits. Please pray that I'll continue to desire and find foods - especially snacks - that are better for my body.

Today, in the midst of my physical pain, I was strengthened spiritually (even though I wasn't able to attend church). I was also reminded of the importance of living my life in a way that would make others desire to seek and follow Christ. We had a visitor for lunch who used to work at the same company as Colin does, but is now in the process of returning to his home country of India. He is also a Christian and shared with our family his testimony. It was encouraging to hear of how he came to accept Jesus Christ as his personal Lord and Savior; it brought tears to my eyes. I'm always in awe of the length God will go to draw someone to Himself.

This young man is thankful to be reunited with his earthly family, but even more eager to share the Gospel message with fellow Indians. It was a privilege to pray for this Brother in Christ before he left our home, but I was even more blessed when he prayed for our family. Isn't that the way God works? We are told to give and be servants to others, but are often more blessed and energized than the receiver. Lord, as this next week begins, may we "look up" to You in total reliance. Thank you for the promise that You can be our strength and song for the days to come. Amen.

Family Celebration

Last Sunday, we celebrated my upcoming birthday since Colin and Jennifer will be traveling on Friday. It was a beautiful, Sabbath day! We had a colorful salad with grilled chicken and potatoes. Yummy! My dessert was scrumptious, too. I ate blueberry cake with vanilla ice cream, blueberry syrup, and of course fresh blueberries! It was a perfect end-of-the-summer celebratory dessert. Below are a few pictures from the evening.

We lit this candle two more times after I made my wish so that Qavah and Annelise could have a turn blowing it out!

Since most of the adults and Qavah were drinking cups of coffee, Annelise wanted to have her own cup of coffee. So after getting "permission" from Annelise's mommy and daddy, some milk and a small amount of coffee was poured into a miniature teacup. The way Annelise stirred and drank out of her teacup, you wold have thought that she was an experienced, lifelong coffee drinker! It was so precious to watch her!

Nehemiah is now fourteen months old. He is beginning to walk when holding onto furniture or other objects.


I got to hold Eva for a little bit; she actually fell asleep in my arms. That was a birthday surprise from the Lord and a wonderful way to end a joyful evening!

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*

A Post... Finally!

Just a short post at that, though. It is late and I'm exhausted. I worked and then came home and cleaned. It's been a full day. Our next "batch" of company arrives tomorrow and that should be fun. So, I'll be tied up until Saturday afternoon.

I was very happy to have gotten a chance to straighten my room tonight. As I made my bed with clean sheets, I was smiling from ear to ear. I guess I was too proud of myself, though! I just finished putting on the top quilt, stood back, and then realized that I put the fitted sheet on completely inside out. Normally, my "Prednisone mannerisms" would want everything to be completely correct, but I'm (fortunately?) too tired to re-do the work. Besides, I'm about to get go to bed anyways. *grin*

Several of my friends have asked, so I will tell you. "Baby Eva" (as Annelise calls her) is adorable, as expected. Even though she weighed 9lbs. 7oz. at birth, she seems so petite to me. Yes, she does have darker skin and hair than the other children. There's only one picture of her and me together at present and it's not a very good photo, but I did post it below. It was taken on Sunday. I did get to hold her for a short while yesterday and that was such a treat. I love the softness and smell of newborn baby skin!

Mini Paragraph Randomness

Well, the comment system seems to be working again. Yeah! However, in the process of fixing the comments, my blog links disappeared. I tried to remember which blogs I was subscribed to, but it was hard to remember. So, if you are a friend and don't see your blog listed, feel free to let me know and I'll (probably) add the website address to my blog links on the sidebar. Then, I think I need a break from computer-related updates, bugs, and viruses.

Did you notice that today's date is 07-08-09? On average, I probably write the date twenty (or more) times a day. Normally, I write the date 07/08/2009, but today's pattern still jumped out at me. I guess I really can have fun with numbers. *grin*

I'm shopping and visiting with my friend, Fairlight, tonight. Maybe, just maybe, I'll remember to take a picture of us together. Tomorrow afternoon, I have an appointment with my GI doctor. I hope it goes well. I haven't seen him for several months.

Happy Days!

We are doing well at home, although I've had monitor my health closely and carefully. I will hopefully update more later, however it has been a very busy time for our family. I just thought that someone might wonder if Qavah and I are still at home and not in the hospital. I'm happy to report that we've had family and friends staying at our home (not the hospital!) for two weeks straight. It's been quite a blessing! One of my favorite things to do is to have company. I look forward to sharing pictures and stories with you, but it is now time to begin another work day.

A Positive Update

Last Sunday when I was in bed sick, I thought to myself, "How am I going to work this week, let alone help Mom while Dad is away?" The answer was, "With God's help and in His strength, of course!" I shouldn't have even worried about the future for I had already seen the Lord work miraculously in this way many times before. Though, He did amaze me again by providing our family with a wonderful week.

Dad's business trip to Sweden went well; he called us everyday with encouraging updates. Back home, Mom kept the house and family running smoothly. Qavah got her transfusion, so she is feeling better. I was able to work everyday this week, plus attend an in-service training, help Mom around the home, and babysit Qavah as needed. Mom and I even accomplished some more much-needed spring cleaning.

Late tonight, we pick Dad up from the airport. So tomorrow, life will probably return to our "normal" routines. However, until then, I'm smiling from ear to ear as I recount the many blessings and answers to prayers that have occurred in the last seven days. Since my joy is over-flowing, I hope it's also encouraging and contagious!

"How great is Your goodness, which You have stored up for those who fear You, which You bestow in the sight of men on those who take refuge in You." Psalm 31:19

Happy Monday

Maybe I'll have some time to write more later, but I wanted you to know that it has been a wonderful weekend. Qavah and I have enjoyed good health and lots of family time. Today, we hope to scratch off some more jobs on our to-do lists. I'm so thankful the Lord has given me the strength this weekend to help Mom around the house.It feels so "normal" and right. Last night, we had our small group here and that was another evening filled with many blessings and joyful memories. There are many things to be thankful for on this Memorial Day!