Saturday, December 23, 2017

The Results Are In

Thank you all so much for your prayers. I was able to see my MRI report and will return to the doctor on January 2nd to see what is next for me. The MRI shows one new, mildly bulging disc. It shows more degenerative changes to the two other herniated discs with bone spur growth, which are pressing on the nerves causing my arm numbness.

So, what does all this mean? Thankfully it means that my upper body is not affected by the newest neurological disease. However, it does mean that the Undifferentiated Spondyloarthropathy, that I was first diagnosed with in 1998, is causing continued degeneration. This causes me a lot of pain, and is now making my arms/hands numb. This can be treated with medications, physical therapy, and surgery, but is also an autoimmune disease that is not "curable."

Please pray that the doctors and I would have wisdom as to the best course of action. Please pray for pain relief. In addition, I will see the cardiologist on December 29th, because of continued abnormal heart beats. Hopefully the next two weeks will provide a few options that can help.

Merry Christmas everyone!!

Until Next Time

Friday, December 8, 2017

Like It Really Matters

The internet has changed the world. Growing up, I still went to a library to research answers, talked on a phone with a cord, and the only games I played were done with a board (until I got an Atari). Recently I have really appreciated that I can sit on my couch and schedule appointments, order food, research anything, and keep in touch with distant friends and family. This is particularly of interest to me because of my disability. I have mentioned plenty of times how living with a disability can be isolating. It also makes getting out and about more difficult. If going to a library to research an answer was still the only way to get information, I am afraid many of my interests would just not be investigated further.

The internet has a lot of great attributes. Besides the things listed above, we have instant access to world wide news, endless music, and how-to videos. It has done many good things, but it also can make it too easy to stay isolated. It is less personal in a lot of ways. It is nothing like real life fellowship, and is a poor substitute for a visit with friends. We have gotten so use to using the internet for everything, that we rarely question what we read. Now fake news spreads like wild fire. We read, click share, and believe things, without ever doing our own research. This internet complacency is obviously not good, and sometimes I fear what our world will look like in a couple decades of social isolation and fake news!

This whole post arose out of this photo that popped up on my FB page a this morning-

Another thing the internet, and social media in particular, has done is entice us to seek approval. We constantly check our phones afraid we might miss something. It is easy for the internet to make us a bit neurotic. We post and watch to see if there will be likes and comments. Viral posts and videos are like striking gold in our society today. Attention-seeking and people-pleasing feed our desire to be "liked." We have a tendency to become self-centered. We feel disappointment when our friends are taking their third vacation this year, and we aren't going anywhere....again.

Does it all matter? Does it matter if everyone likes our funny cat video, or our vacation photos? Should it matter? Of course it is easy to say no, it doesn't matter. We say, "I don't care what everyone else thinks." Then, we are privately disappointed. (Am I alone in this?) Part of the reason I share my struggles is because it appears to me while scrolling through my newsfeed that everyone else's life is perfect. Or at least it is easy to start thinking that way. 

"My husband got a raise" 
"My child won an award" 
"We just bought a new home" 

We see smiling family photos and happy stories. We begin to wonder why we can't get our acts together like everyone else. Rarely does someone post things like:

"I lost my job and have no money for food"
"My spouse cheated" or "I cheated"
"I yelled at my children today"
"I am hurting/struggling"

The internet and social media would have us to believe we are different. We are failures and everyone else is successful. Bitterness, sadness, shame begin to creep in to our hearts, as we compare ourselves with others.

We must be vigilant over our hearts. There is a war going on. Actually there are two wars. There is a war raging within us, one between the spiritual man and our sinful flesh. The other war is the spiritual battle that goes on in the heavenly realms for your very soul (Ephesians 6:12). The battle is real, and it has serious, life-threatening consequences!

As believers, we are called to be pleasers of God, and not people pleasers. We need to do and think what God would "like", what is pleasing to Him, and not do things hoping others will "like" it.  We live in a society that tells us that you are nothing if you don't have fans, followers, and likes, but we serve a God that calls us sons and daughters. We have been grafted in to His family vine. We are to be followers of Jesus Christ. We ought to live lives, like the apostle Paul, that allow us to say "Be imitators (followers) of me, as I am of Christ." (1 Corinthians 11:1) Those are the kind of people I want to follow, and the type of followers I want!

How do we overcome this societal pressure? It will be a daily battle. We must fight to keep our eyes fixed upon Christ. We must remember that we are in a battle, and not get complacent. If you are not a believer, not a follower of Christ, do not think that you are excluded from this battle. Your unbelief, and denials do not negate the FACT that this war is raging around you. Your soul is the prize. You have two choices: serve God or not. By not serving God, coming to Him in repentance and faith, you are serving your soul up on a silver platter to the enemy who "prowls around like a roaring lion, seeking whom he may devour." (1 Peter 5:8) This enemy is Satan himself. Choose this day whom you will serve, for tomorrow is promised to no one (Joshua 24:15).

I will leave you with this; praying that you and I both would put on the whole armor of God, and open our mouths to proclaim boldly the mystery of the gospel.

"Finally, be strong in the Lord and in the strength of his might. Put on the whole armor of God, that you may be able to stand against the schemes of the devil. For we do not wrestle against flesh and blood, but against the rulers, against the authorities, against the cosmic powers over this present darkness, against the spiritual forces of evil in the heavenly places. Therefore take up the whole armor of God, that you may be able to withstand in the evil day, and having done all, to stand firm. Stand therefore, having fastened on the belt of truth, and having put on the breastplate of righteousness, and, as shoes for your feet, having put on the readiness given by the gospel of peace. In all circumstances take up the shield of faith, with which you can extinguish all the flaming darts of the evil one; and take the helmet of salvation, and the sword of the Spirit, which is the word of God, praying at all times in the Spirit, with all prayer and supplication. To that end, keep alert with all perseverance, making supplication for all the saints, and also for me, that words may be given to me in opening my mouth boldly to proclaim the mystery of the gospel." Ephesians 6:10-19 (ESV)

Until Next Time~

Thursday, December 7, 2017

The Saga, I Mean, Journey Continues

It has been a particularly difficult couple of months as I mentioned in my last post. I saw the neuro-oncologist on Tuesday, and I decided I needed to ask for prayer. I know many of you pray for me regularly, and I am thankful! I think knowing exactly what to pray for can make it easier to remember.

So here is the update in a nutshell. First, the recent increase in neck pain has been accompanied by arm/hand numbness, and weakness (this is both noticeable to me, but also measured on the doc's grip squeeze test thing-a-ma-bob). He has ordered a cervical MRI which is scheduled for Sunday, December 17th. The options are likely either:

  1. One of my herniations has worsened. If a herniation is bad enough surgery will be considered, but because I have started developing an excessive amount of scar tissue after operations, this will be a last resort only in the event of a serious herniation that is compromising the spinal cord that would have disastrous long term effects. Anything less serious than that will require more physical therapy, more injections, and likely just more pain to deal with.
  2. Or the even worse option is that the autoimmune neuropathy has spread to the peripheral nerves in my upper body now also. 

Please pray for it to be a herniation that can be dealt with non-surgically. Pray for less pain. Pray for God's will, and me to be fully accepting, trusting and for continued strength.

Next, I have developed another blood clot, now in a finger of my right hand. Several months ago, they removed one from a finger on my left hand. Surprise, surprise, the doctor said this is very rare, especially to have two so close together in time. They normally only see this type of blood clot in people like mechanics who would "bang their hands a lot." He feels that these smaller issues are likely all related somehow to the mystery underlying disease, and "we (meaning doctors) just are smart enough to put all the pieces together yet." I have an appointment with the hand surgeon on next Monday. Please pray this surgery goes well again. While this is a bit painful when I bump my lump, it is mostly just an annoyance, that will now require another surgery. Sigh...

I covet your prayers. This all makes me think of the current book study I am doing with a friend, "The Envy of Eve" by Melissa Kruger. If you are looking for a well written book, that has good questions at the end of each chapter, and want to really expose your sinful heart, I highly recommend this painful little gem!

We have just finished chapter 2. The author tackles the subject of coveting, and explains that we all have desires. The dictionary says that coveting = desires (like when I say "I covet your prayers"). The author makes clear that coveting is not simply having a desire. She defines coveting as "an inordinate or culpable desire to possess, often that which belongs to another."

We can desire wrong things (things clearly prohibited in Scripture), and can also desire good things (like a spouse, or children, or good health), but sometimes for wrong reasons. There is nothing inherently wrong with wanting to be healthy, or be married or have children. In fact, I think that the Bible would call making wise lifestyle choices, marriage and children all "good."

As we covet, we become less thankful and more disappointed. The book continues to explain that the root of coveting is unbelief. Wanting to be pain free and healthy implies that I cannot be happy or fulfilled without those things. Even the way the doctors describe wanting to "improve my quality of life" tempts me to believe that my life isn't as good as it could be, and I covet.

When I want to be well so much that I forget to be thankful for all that God has done, I covet.

When good health and the ability to walk freely starts to make me compare myself to others (think that they don't appreciate or take for granted their health, and think that I deserve what they have), I covet.

Worse yet, at the heart of all that sin is the fact that I am saying to God, 'Christ alone is not enough.' Coveting says I need Christ plus one thing (or perhaps multiple things). It says that I don't trust God enough. I bear poor witness to those who don't believe, that God alone isn't enough.

I forget that He alone has chosen this path for my good and His glory. I forget that He formed me in my mother's womb, and He alone knows what's best for me. When I covet good health (or anything else), I forget that God sent His own son to die in my place, and He has redeemed me, and THAT is enough! I need to trust Him fully, look to Him alone for strength, and be thankful for His salvation.

It is so easy for our sinful hearts to want what we desire so badly, that we fail to stop and think what those actions say to God. So, I cry Lord "I believe; help my unbelief!" as the boy's father did in Mark 9:24. I know that God has heard my cries. I know He cares for me, and that I can trust Him. I know that Christ has provided a way of redemption for those who believe and repent, and that there is nothing this world can add to that. Nothing compares to His free gift, His sacrifice. Nothing. Not even good health. Please pray I would not covet good health.

Is there something you are coveting? Believe Christ Alone is enough to save us and meet all our needs. Repent today and turn to God in faith.

Until Next Time~

Thursday, November 30, 2017

I Used To Love Lemonade

I used to love lemonade. When I gave up sugar and grains a few years ago, it was one of the things I missed most. I am sure you know the old saying, "when life hands you lemons, make lemonade." It seems lately I have been handed more lemons than I know what to do with, and I don't drink lemonade, so what's a girl to do?

Pain levels lately (mostly from my neck pain) have been very high. I have been managing that pain with lots of different medications. It feels like I am just spending my days trying to survive the pain-filled day, only to go to bed, wake up and start all over again. On top of the increased pain level, I have had constant muscle twitching, with frequent spasms in my legs. The short days and restless sleep bring increased fatigue. This past two weeks has also brought a cold, UTI, and almost daily headaches (a few actual migraines).

So what is a girl to do with a 20-lb sack of lemons? I just slice them up, and use them one at a time. (They taste great in water or tea!) One day at a time. One "lemon" at a time. That is how I am dealing with this all right now. Thinking about how I am going to feel in 10 years if this continues, overwhelms me, but thinking about right now, this minute, I am doing it. I am surviving it. People frequently tell me they could never handle all this, or that I am such a strong person to keep going, but the truth is that there is nothing special about me.

I deal with it the same way you all would. I manage one day at a time. Sometimes, just one minute at a time. I do often want to give up, but really what does that look like? Life still goes on around me. I still have to shower, get dressed, and eat at a bare minimum. I need to take care of some basic things around my house. I have a family, and although they are older and self-sufficient, I like to think they still need me. :)

I can't really "give up" even when I though I some times want to. I don't have a choice to quit. I can't make myself well. I can't just stop the train and get off. So, I press on. My choice is to remember all that God has graciously provided for me, including the medicines that make the pain more bearable, and be thankful each night that I manage to make it through another day. The only other choice is to become bitter, like the lemons, and miss out on enjoying this life I have been given.

Dealing with all of this has definitely slowed me down. I can't just rush through life too busy to stop and smell the roses. Not just because I choose to, but because it is honestly not physically possible to rush around anymore. So, I try to gather all the "lemons", slice them up, and eat them one wedge at a time. I try to enjoy that they flavor my life, and not let them make me bitter. I cling to God, and His promises, and try to enjoy my slower-paced life, and extended periods of alone time that can be used in sweet communion with great friends, a loving family, and a righteous Savior, who laid His life down for mine.

I know that every thing I experience has been filtered through my Lord's loving hands, to produce good fruit in my life, to remind me to appreciate those people He has placed in my life, and to be thankful each morning that I have another day in which to slice lemons.

Until next time~

Tuesday, October 3, 2017

Onward and Upward!

If you haven't already heard, I have decided to stop treatment, and let the disease progress naturally. I saw the doctor today, and he was in agreement due to the level of side effects I experienced this time. He did say we could try again in the future, if things take a sudden turn for the worst, and I feel it is worth the risks.

This choice is not:
 Que sera, sera;
 whatever will be, will be; 
the future's not ours to see.
Que sera, sera

This is a willful submission to the will of God. I am not throwing up my hands and saying "I give up" or "I don't care what happens", because I do care. A lot!

What I am saying is that the future is not mine to see. I do not need to worry and fret. My future has been settled, since the foundations of the world (Ephesians 1:4), I am not in control. I cannot know or change what the future holds, but I choose to trust. I trust that God, who has numbered my days and the hairs on my head, and has my name tattooed on His hand, is faithful to strengthen me for the future He has planned for me. I find peace in knowing that God knows me by Name. He knows what I need and provides for those needs.

I pray that I would be faithful in my suffering. That I might hold fast. That He would help me to number my days and consider my days (Psalm 90). That He would help me keep my eyes upon Christ, and not my circumstances. That He would allow me to use every day that He grants me for His glory. I know that whatever comes my way will be used for my good.

My prayer for us both is that we would serve Him faithfully whether that is done from a standing position, from a wheelchair, or even from a bed.

To God be the glory! Regardless of what happens to my physical body, I find peace in knowing that it is well with my soul! I hope it is well with yours too, my friends. <3

Until Next Time

P.S. The onward part of my title is covered in the above post. The upward part is regarding the elevator (pun intended) :) Mike, Mike, and Mike from HMS in Downers Grove (and yes, that is really the construction team's names!), came for the final consultation on Friday afternoon. We are waiting on the written quote, but really like their company and all 3 Mikes were great. Bar unforeseen circumstances, we should sign with them to get the architect going on a plan, and break ground (literally) shortly after the first of the year. I have applied for a grant that could provide up to $5,000. Please pray this is approved. I have raised just over $1,000 on my donation site. Well, on our way to covering the $60,000+ cost! Thank you all for your generosity!!

Tuesday, September 26, 2017


As a NASCAR fan, the three letters I hate to see behind "my" driver's name (Matt Kenseth, in case you missed all the Dewalt tools, signs, clothing, and yellow and black in our home) is DNF: Did Not Finish. Today I am a quitter.

Last Monday, I had the first infusion of Rituxan (chemotherapy drug), starting my second round. It hit me very hard this time. Sleeplessness, overwhelming fatigue, horrible nausea, headaches, heart arrhythmia, stomach upset/pain, night sweats, chills, and hot flashes (seriously, is it possible to spontaneously combust?). Needless to say, I have felt very sick. My days have not been very productive. I have just sort of been surviving. There have been lots of naps, and early bedtimes. Today, I decided that I can't do it again. I am supposed to have the second infusion Monday, but I have decided to stop. DNF

Headline reads "Shari Czerwinski DNF - out of race in first lap."

Feeling as lousy as I did all week was rough, and not something I could do long term. The heart arrhythmia is the part that troubles me the most (this same thing happened last winter too during the first round). I want to walk, to fight this disease, to stay strong, but my legs are not important to live, like my heart is. My life won't end when my legs stop working, but the same cannot be said about my heart! This isn't an easy decision. No matter which choice I make, there are unpleasant consequences. If I continue the infusions, there is no guarantee it will even help. If I stop doing the infusions, the prognosis is uncertain, so there is no guarantee I will continue to get worse either (although this has been the case thus far).

In the grand scheme of things, whether I do the infusions or not, whether I continue to deteriorate in health or not, the important thing is that ultimately, I am not a quitter, but by the grace of God, that I continue to fight the good fight of faith. That is the important fight, and one with life altering consequences with eternal ramifications.

"I have fought a good fight, I have finished my course, I have kept the faith: Henceforth there is laid up for me a crown of righteousness, which the Lord, the righteous judge, shall give me at that day: and not to me only, but unto all them also that love his appearing." (2 Timothy 4:7-8)

The most important decision we can make is the one with eternal consequences. Turn from your sin to God in repentance, place your faith in Christ alone for salvation, and join in the good fight, that you might be sure that a crown of righteousness is laid up for you also.

Until Next Time-

P.S. A grant opportunity has presented itself for my elevator donation fund from Joni and Friends Christian Fund for the Disabled. Please pray that this application goes smoothly and that I might get the full $2,500 grant and matching funds from my sponsoring organization please. 

My personal fundraising efforts are nearing the $1,000 mark (almost 10% of my goal). Thank you all for giving, praying and sharing to help us with this large accessibility expense. The final cost hasn't been determined, but ball park numbers are in the $60,000-70,000 range.

Thursday, September 7, 2017

Discouraged In The Waiting Room

Well, in Chicagoland, hayfever season is in full swing. I know because I have used a lot of tissues the last couple weeks and feel pretty miserable. I am convinced that I am immune to allergy medicine! If it is helping at all, I would hate to think how bad I would feel without it, but I digress.

My home has become my waiting room. I have been waiting on emails and phone calls from my oncologist, neurologist, and insurance company. Since we all decided to do another 6 month trial of the Rituximab, I have been doing a lot of waiting, and still no insurance approval. I am not the best at waiting! I prefer the "let's get this done" method. Please continue to pray for the insurance company to get this approved so I can get started.

I am hoping that these infusions slow the progression of the neurological disease, and my most recent diagnosis. (They still aren't sure exactly what it is, but have officially been calling it CIDP). There has been a LOT of confusion with family and friends since I have an oncologist and am doing chemotherapy. There is a long list of other questions too:

  • Why does your neck hurt from a neurological problem in your legs?
  • Does the leg brace fix the problem?
  • Am I getting better?
I can't list or answer every question that I have been asked, heck even the doctors can't answer many of them, but I decided to give a rundown of the main medical issues I face. I will include some links if you want to know more about any of them.

In 1998, I started having back and joint pain. I lost a lot of weight and was fatigued constantly. The doctors knew right away that it was an autoimmune disease, but struggled to decide the exact one. The truth is, over time, I developed more symptoms and had more testing which helped with the diagnosis.
  1. Spondyloarthropathy - This inflammatory arthritis has been consistent since 1998. I now have bone spurring and 8 herniated discs, widespread joint pain, and occasional swelling, and fatigue. Combine that with being rear-ended 3 times, and I have constant neck and back pain which frequently triggers headaches and causes great difficulty sleeping. There have been many procedures, surgeries and DMARDS over the years to help as much as possible.
  2. Plexiform Neurofibroma - In 2009, after many years of left leg numbness, loss of reflexes and knee buckling, Northwestern docs found a 5.5" long nerve sheath tumor growing on my femoral nerve. They removed 7" of the femoral nerve to get clear margins, and after 2 failed attempts to reconstruct the nerve, my left leg is partially paralyzed. I have no quadriceps function at all, so no running, kicking, squatting, standing up, etc with that leg ever.
  3. Now, this new "mystery" autoimmune peripheral neuropathy, that is similar to CIDP (and they have begun calling it this just to make things a little easier). This started after my partial knee replacement, and I first saw a neurologist in 2012. This is the disease that the chemo is currently for. The disease has caused me to lose all reflexes in both legs, along with weakness, numbness, nerve pain, leg cramps and fasciculations. This also makes sleeping difficult, and frequently painful due to cramps waking me up several times each night.
So, the second item on the list (the nerve tumor) was removed. It was not cancer. It did leave my left leg permanently partially paralyzed. The leg brace I wear simply helps to catch me when I fall, and I do fall. I fell once without it and it is hard to describe, but I go from standing to flat down on my knees, leg buckled underneath me, in a split second. Without the brace, I tore my quadriceps muscle and fractured my kneecap. The brace "catches" at about a 90 degree bend. When I fall it helps protect my knee and does not stop me from falling. It doesn't help me walk, and my leg will never get better.

The first and third items are both autoimmune diseases. In any autoimmune disease, your immune system gets stuck in high gear. Normally, if a "foreign body" (think virus or bacteria) enters your body, the immune system recognizes the intruder and sends fighters out to isolate and eliminate them. Autoimmune diseases happen when that system goes haywire. My immune system sees my spine and joints (#1 on the list), and my nervous system (#3 on the list) as foreign invaders that must be eliminated. Basically my immune system is destroying itself (and me) trying to fight imaginary bad guys. 

Using immunosuppressive medicines like chemotherapy, just keeps my immune system so weak that it cannot destroy my body too quickly. It is not a cure. While remission can happen, it is rare, and most likely I will not "get better". 

With all that said, I get to the discouraged part of my blog post title. Days seem to be getting harder and harder lately. I rarely leave the house, although my wheelchair has helped me to have an easier time getting to places when I need too. With neck and back pain, headaches and joint pain a daily issue, you can imagine that just getting my chair in and out of the car, driving, cleaning house or even showering can be challenging and increase my pain level. The lack of balance, and increasing weakness have made some thing impossible and other tasks increase the risk of falling. (I seem to be covered in bruises lately).

Having a paralyzed left leg makes my right leg have to do all the climbing and weight bearing. Lastly, now add a disease, causing both legs to be completely numb and weak, and I think you could see how discouraging and difficult it can be. The rough mornings with allergies the last couple of days have just "added insult to injury" and tipped the scales to my breaking point. Every once in awhile there are tears, and it is the time once again. This is all a bit overwhelming. At times this all seems impossible. I am a worrier by nature too, so knowing the upcoming expenses involved because of all of this, stresses me out too.

I saw this and was reminded, when I feel like I am at the end of my rope, when I feel isolated and discouraged, when I feel weak and like I can't go on, I know that He is stronger. Prayers are very much appreciated, but by the grace of God I have been able to have an occasion, brief pity party, and then get back to doing what He has called me to do - to suffer well - to glorify Him and enjoy Him forever.

I pray you know the One who sustains me, for He will sustain you too.

Until Next Time

Friday, August 4, 2017

IVs and Hand Sanitizer.....Here We Go Again

July 2016 is when I had my first infusion of the chemotherapy drug Rituxan. Now, one year later, things have definitely gone downhill. Balance issues have become one of the worst symptoms, as I have several "near falls" daily. Stair climbing and long walks are getting more difficult, if not impossible. The muscle cramping and constant twitching is painful and irritating. Sleepless nights leading to overwhelming fatigue are also part of my new normal.

Today, Chad joined me at my neurologist appointment at Northwestern. We spent some time reviewing how I was last year, how I was during the 6 months of chemo, and how things have gotten worse since I stopped. The doctor thinks I should restart the infusions, and see if we notice a lessening or slowing of symptoms again. I have agreed to give it another go around, but with some reservations. As I have mentioned in the past, there are a lot of potentially dangerous side effects. There isn't a good way to predict who will have these issues, or when. I will need to be diligent again about avoiding sick people over the next 6 months.

Some days I am convinced to just stop all treatment and let the progression happen naturally. Other days, I am certain that fighting this is the best course. Honestly, it is not an easy decision. Nothing about this is easy. Life isn't very accessible, so even if I just get to a point where I need my wheelchair full time, it makes everything harder. There are places I can't go alone, items I cannot reach, and pain. Lots of pain. Both from the disease itself, and from the added difficulty of maneuvering.

Pain is part of my daily life. Thankfully a blend of prescriptions and the medical cannabis has made it bearable and allowed me to get back out into the world. I have been doing a lot more things I enjoy, so that is a good thing. I do hate that it takes a lot of meds to get me to that point, but am grateful for the relief.

The lack of accessibility is frustrating and exhausting. You just don't realize how difficult it is to shop, or enjoy lunch with friends while in a wheelchair, until you actually try to do those things while in a wheelchair. I have been tempted to start a Twitter or Instagram account just to post #disabilityfails posts. There are so many "accessible" rooms, parking spots, businesses, and bathrooms where items like chairs, boxes, or other things are stacked to utilize that "large storage space" rendering those places completely unaccessible. (I do not think that word "accessible" means what you think it means)

We have spent the last month remodeling the house. Most of the process has been windows, doors, and siding to update our home and make it more insulated, but we also remodeled the powder room to make it accessible. We have an appointment on September 20th with an elevator company. That day is coming quicker than I would like. I pray the chemo helps slow things down, halts the progress, or even reverses it. (is that too much to ask?) I at least hope we have enough time to recuperate, both financially and mentally, for the next round of remodeling, as an elevator install is no small undertaking! My mental health definitely requires a break from construction for a while too!! haha

I continually praise God for His faithfulness. He has patiently taught me so much through all of these trials. He has provided me with fantastic friends who pray for me and with me, who send a cheerful message or card just when I need it most, and give selflessly of their time to sit with me during infusions, drive me to doctors, or bring a meal (even with my crazy paleo diet). God has strengthened family relationships too. I would never have chosen to go through any of this, but I stand in awe as I look back over the last several difficult years, and see His handiwork in my heart, and all around. His mercies truly are new every morning! Turn to God, through Jesus Christ, and may He give you the forgiveness and sustaining grace you need to get through this painful life. <3

Until next time-

Tuesday, June 13, 2017


We just returned from southern Indiana and my family reunion. Let me start by saying that a drive that takes 5 hours without any stops (and trust me, we make LOTS of stops) was way harder physically than I expected, but I am so very thankful I made the trip! I got to see my father (been a few years), and aunts, uncles and cousins, some of whom I haven't seen in decades, and others I didn't even know I had!

One thing that struck me was that although we didn't really know a lot of the people, the common bloodline connected us in a way that made conversations easy and enjoyable. There were plenty of laughs, and hugs, and stories. This just has me thinking about family, and what that really means. You know I am getting more sentimental as I get older! :)

Sharing the same heritage connects us in a way that is difficult to explain. Have you ever stepped into an elevator full of strangers? I think we all know how quiet and uncomfortable that can be. When you are with relatives, that awkwardness seems to disappear. We feel a level of comfort that we don't have with strangers.

I also have learned that family relations can be difficult. We don't choose our family. This means that there will be people that you wouldn't necessarily choose to be friends with, but because they are family, you work to overlook their annoying habits, personality quirks, and other things that would normally drive you crazy. Family members can hurt you more deeply than strangers can too, because of the emotional connections we share.

Last night, I was thinking about the church. The Bible says that followers of Jesus Christ are adopted by God, making us brothers and sisters in Christ. When we walk into a Bible teaching church, filled with followers of Christ, there should be a level of comfort and connectedness like I felt at my family reunion. We share the same bloodline- that of Jesus Christ, our Lord and Savior, who shed His blood for us. Like our "birth" family, there can also be trying situations and difficult relationships with our church family members.

Unfortunately, families dissolve and fight. People get divorced, siblings argue and don't speak, and churches split apart. Why? That has been what I have been thinking about since this weekend. The most obvious answer to me is that we are all sinners. We can be selfish. We can set our expectation of others so high, that they can't possibly live up to them, and then we get disappointed and angry. Chad and I joke a lot about this actually. Long ago, God helped me to realize that the majority of our arguments were due to me expecting Chad to be and to do things he isn't capable of being and doing. In a lot of ways, I expected Chad to fill roles that only the Lord can. When God graciously revealed that my own selfishness was at the root of it, I set my expectations lower. I told Chad that I need him to work and provide, as God allows, and I will be content with that. I started to do all the things that I am capable of doing, and took my struggles to God in prayer. Very quickly I realized that I spend most of my days very content, and when Chad exceeded my expectations (which was easy to do when you just expect him to work), and he did something I wanted him too, I became grateful and told him so. Previously, I was just nagging constantly, and telling him he isn't doing enough. We fought a lot and it was damaging the intimacy that a married couple share.

So, what is the point of all of this? I guess I was thinking about what a great time I had this weekend catching up with relatives. I was also reminded of churches that I have been to that are unfriendly, and unwelcoming. It made me think that because of the shared bloodline- whether it is through your mother and father, or you are a believer connected through Christ's shed blood- we need to pray. Pray that we can be forgiving and that others will forgive us. Pray that we extend grace to others, and they will do the same. Pray that God would show us our own sinfulness before we dwell on the sins of others.

I will let you down. I will fail to do what I ought to do, and do things I shouldn't. I will upset you, say things I shouldn't and disappoint you. I hope that as family members, we can talk through our issues, give each other the benefit of the doubt, and offer grace and forgiveness. May we always be remembering that through Christ, God forgave us and has extended a large amount of grace to us, and we ought to do the same.

The older I get, the more important my family is to me, both the church family I see frequently, and the one of my heritage. There isn't anything I wouldn't do to help my family in need, and I pray for y'all. (For my southern girls!)

~Until next time,

Tuesday, May 9, 2017

Rain and Plinko

As I sit typing this post, it is raining outside. There is something comforting about sitting on my couch drinking coffee, and watching the raindrops hit the window and run down the glass. Each drop that hits the window takes a different path down the window. Occasionally a drop will join in a previous stream of water, only to jut out to the side and continue down it's own path. Maybe I am crazy (depends who you ask!), but it reminds me of the game Plinko from The Price Is Right. (click here if you don't know what this is)  I used to watch this game show with my grandmother as a child, and after she passed away, I still tuned in when I wasn't at school.

In the game Plinko, contestants would climb to the top of a large board filled with pegs. At the bottom of the board, were spaces labeled with various amounts of money that the person could win. I remember contestants running up the stairs, excited and confident they would release the puck in just the right spot to win the grand prize, The chip would hit a peg and bounce wildly from left to right and filter slowly down into one of the spaces. The buzzer would ring bzzzzzzzz. "Zero. Sorry you didn't win. Try your next chip." Each time they would strategically plan and listen to the audience screaming advice from the sidelines. Sometimes contestants would win a few hundred or more, and a handful of times I saw someone get the largest prize amount. The contestants that left with any money at all, while probably disappointed, still were just happy to have won anything.

With my 47th birthday just days away, feeling lousy, and realizing I could be 2/3 of the way through my life (a guess based on my genetic pool), I am thinking about all of this and our path through life. Some of us plan and strategize and seem to carve out our own path, like the rogue raindrop on my window. Others look to the crowd for answers. Still others, paralyzed with fear to make the wrong choices, meander through life bouncing this way and that.

No matter what path we choose in life, we all stumble over an obstacle, course correct, or even completely turn and change directions at times. There are places in our life where we run up those stairs with excitement and expectation, confident we are headed in a good direction, only to feel like the chip bouncing around down the other side.

No matter which path we take or how long it takes us to get there, we all end in the same place - death - "the great equalizer" as it is called. One day our physical bodies will cease to breathe and our hearts will stop beating, but this is where the story takes a turn. Hebrews 9:27 tells us that every person will die, and then face God's judgment. When our earthly bodies die, EVERY ONE of us will stand before God and give account of our path, our choices, our life.

Did we follow the advice yelled by those on the sideline? Did we bounce around aimlessly with our fingers crossed just hoping to get it right? Have we just gotten in line behind someone else and followed their path without really thinking about where we were headed? Were we convinced that every path would lead to the "grand prize"?

The Bible makes clear there is only ONE path that leads to eternal life. Those who follow all other paths will be cast "into the furnace of fire. [Where] there will be wailing and gnashing of teeth." (Matthew 13:42) What a graphic picture and warning of Hell we are given in that verse! Jesus warns us that He is the only way to God and that path is narrow and few will find it (John 14:6; Matthew 7:13-14) For those of us who, by the grace of God, have placed our faith in Christ alone for our salvation have confidence that our earthly death will be the beginning of eternal life with God. For any who has failed to find the narrow way, your earthly death will be the beginning of eternal torment in hell.

Fresh on the heels of yesterday's post about making choices, let this be a further reminder of the seriousness of the choices we make and the path we take! Make no mistake my dear reader, there are really only two paths! Unlike Plinko, you either receive the "grand prize" or will hear the "Bzzzzzz" and realize there is no reward, only torment. You are either on the path to life or on the one that leads to death. You have chosen to place faith in Christ as Redeemer, Savior and Lord of all; or you have chosen to deny Him and walk away.

Heaven or hell.

Life or death.

Choose this day which path you will take!!

Until Next Time,

Monday, May 8, 2017

Between A Rock and A Hard Place

I have watched several movies or TV shows that include a scene where the main character has to make a tough choice. They have just minutes or seconds to make a life or death decision. The first one that comes to mind is 'The Dark Knight', in which Batman must react quickly and choose to save District Attorney Harvey Dent or his love interest Rachel Dawes. Don't worry, no spoilers.

Making decisions can be difficult and have serious consequences. Sometimes it is hard to know what to do or which way to go. For me, this week, those choices have been medication related and very difficult. The meds I have been on recently have provided a decent amount of pain relief. They have allowed me to do some things I enjoy and complete many necessary tasks. It hasn't been a perfect solution by any means, but much better than living in constant pain unable to do almost anything or make plans. Unfortunately, my blood pressure has been elevated for the past couple of months, and isn't getting better despite low dose BP meds added to my daily routine. The doctor feels that the medication that is helping me with the pain is causing the high blood pressure. Ugghhh

Now I am forced to make choice. Stop the meds and live with the pain, or start two new medicines- one that may help with nerve pain, and one more addictive narcotic. They both should help lower my blood pressure and pain levels. They both also have other serious side effects and will likely make me drowsy. So I see my choices like this:

1. Stop the meds. Live in constant pain, with difficulty sleeping as a result (-1 point), and therefore get nothing done during the day that is necessary or enjoyable. (-1 point)
Bonus: my blood pressure goes back to normal which is good, especially with my family history and recent abnormal heart rhythms. (+1 point)
Conclusion = Score -1

2. Stop the old meds, adding the 2 new prescriptions. Likely relieving the pain while making me sleepy all day, but raise the risk of addiction (-1 point); therefore get nothing done during the day that is necessary or enjoyable (-1 point).
Bonus: my blood pressure goes back to normal which is good, especially with my family history and recent abnormal heart rhythms. (+1 point)
Conclusion = Score -1


I feel stuck between a rock and a hard place! Neither seems like a good way to go if you ask me. (I know you didn't, but I am telling you anyways!)

Like Moses, in Exodus 33, I find myself crying out to God for answers, to see God's glory, to feel His presence. Moses, asking God to see His glory, was placed in the cleft of the rock (similar to a rock and a hard place?), and God says "I will make all My goodness pass before you, and I will proclaim the name of the Lord before you." God reveals to Moses that He is sovereign, compassionate and gracious, as Sproul's commentary notes, that in Jesus Christ, God's glory is revealed- both graciously and compassionately- through the Holy Spirit to all who believe.

Choices have consequences and side effects, whether we are discussing medications, or actions in our own lives. Some choices are easy, and have little long-term effect. (What should I wear today?) Other choices truly are a matter of life and death, for "the wages of sin is death" (Romans 6:23). (Where do I place my trust? Who shall I serve?)

I am thankful that the glory of God is revealed in Jesus Christ. That glory reveals "something of His nature, character, and power....God is glorified in the acts of salvation, because they exhibit His incomparable condescension, His inexhaustible love, and His limitless power.....and those He saves have contributed nothing to their salvation except their need" (from Sproul's footnotes in the Reformation Study Bible).

Oh what joy this brings my heart, when from deep inside this dark cave that feels as though it presses me from every side, His glory is revealed to me as a wonderful ray of light that chases away the darkness! I understand more fully His nature, His character and power, and as a result I learn to trust Him even more.

I am still deciding on my options, reading a lot about other treatments, monitoring my BP, and managing one day at a time right now. I will need to decide something soon. More importantly, there are choices that MUST be made today! Scripture is clear that sin is to be dealt with immediately, it's consequences are wide reaching and devastating. Today is the day of salvation, for no one knows what tomorrow will hold (2 Corinthians 6:2 & Ecclesiastes 7:14). Do not delay in choosing the only path that provides the cure we need. Place your faith in Jesus Christ alone for salvation, repent and ask for forgiveness. Remember that failing to make any decision, is still a making a decision. There is no other choice you will make with such life changing consequences.

Go now, check your vitals. Are there signs of life or are you a dead man walking?
May we all turn to Christ, the only solution to the greatest of all problems, and cling to Him in our need.

Until Next Time,

Thursday, April 20, 2017

Decisions, Decisions, Decisions

Okay, I admit it. I am a control freak! I like to think, and plan, and know every little detail about everything. I am not a risk taker. I am definitely methodical and deliberate. Herein lies the problem. The older I get, and the more trials I go through, the more I realize the need for control is a coping mechanism. Trying to make sense of everything and logically put it in a category to be dealt with is how I get through many of the daily issues with which I struggle. Control is an illusion, I have heard that, and know it is true. Control can also become a form of bondage, and disillusionment. When things don't make sense, and all the pieces don't fit nicely together, we become discouraged.

I will never be a person who flies by the seat of my pants. I will always plan, and organize; seeing each and every tree, and not the forest. Yet, in the midst of my pain, my medical treatment, and daily living, I have come to let go of a lot of the things beyond my control. I have found freedom and joy in trusting God to get me through. I know that He is in complete control. Nothing goes unnoticed or unchecked, and that helps me to rest in Him. He gently, lovingly, mercifully allows me to keep learning and trusting more and more. I still plan and research things. Knowing as much information  as I can, helps me to accept and deal with my reality.

I am fast approaching my 47 birthday, and the six month mark since I had the chemo treatment. The Rituximab drug should keep my immune system lowered for about 6 months, and so I need to make the decision to stop now, or keep taking it. Unfortunately, I did not get one of the clear answers doctors were looking for:

  1. I keep getting worse and they know the medicine did nothing to help, which would cause them to reevaluate if this truly was an autoimmune disease. OR
  2. I get better and they know for sure it worked and they are on the right track.

If you know me at all, you know I like to do everything the hard way! So my body went with option #3- I don't get better, but don't get worse either during the 6-month period. Then we must guess if the disease is so slow progressing that I would not have gotten worse with or without the chemo, OR the treatment helped in keeping the disease from progressing, thus keeping me from getting worse.

This is not an easy choice. This drug is toxic, and can cause a host of serious health problems all by itself. I have researched and sought doctor's advice, but in the end it all comes down to me just saying yes or no to another round of chemo. No one, but God alone, knows whether this is a good idea or bad, whether I really need the medicine or if I would be ok without it. I very much dislike the unknown, and some days I feel like I am jumping blind off the high dive, just hoping someone didn't forget to fill the pool beneath me, praying that there really is a pool there. I am thankful to know that having placed my trust in Jesus Christ both as my Lord and Savior, He has promised to keep me; to work all things for my good and His glory. No matter what I decide, I know that He has all the details worked out, and will help me navigate the unchartered waters I am wading into. No matter what happens, or what decision I make, I know beyond a shadow of a doubt that He gives me "eternal life, and [I] shall never perish; neither shall anyone snatch [me] out of [God's] hand" (John 10:28)

Just as a quick update with all the other details:

My new wheelchair is A-M-A-Z-I-N-G!!! Last year while serving at JAF Family Retreat, during wheelchair training, we were told you don't say someone is 'confined to a wheelchair', as wheelchairs uses don't feel stuck in one, but they see it as an extension of their body that gives them the freedom to move about. Now, I finally really understand! It is empowering to be in control of your own chair (there's that word again), going where you want, and getting out of the house to locations I haven't made it to in a while, because I can't walk that much. SO much diferent than being "stuck" in a big, hospital- style wheelchair with someone else pushing you where they want to take you. It all makes sense now, and am so very thankful to have good inusrance to cover the extremely high cost.

Secondly, and on 4-20 no less (FYI it's a reference I just learned about the number 420 and it's connection to marijuana), I received my medical cannabis card a few months ago. I went through some anxiety just going to the dispensary the first time, and trying some of the products. There are hundreds of varieties, strains, methods of use, and it is all new to me. In the end, I cannot imagine why they would not legalize it and make it more available. The doctor recommended CBD oil, and I have tried a few different types. It isn't a cure, and I am still figuring out strains, and methods, and amounts (since it isn't prescribed, you have to experiment on your own to see what works). All in all, I am happy to report that the pain relief it provides decreases the amount of narcotics used, and has virtually no side effects. (This does depend on the product chosen. A couple types have made me a bit tired or dizzy, but less so than the narcotics do). This is all good news to me! 

Hope you are all well! Are you trusting in yourself to figure everything out, to find your own way, or are you trusting in Christ who already knows the end of your story? The only One able to keep you from stumbling.
Until next time ~

Thursday, January 26, 2017

Seeking the Lesser

Being sick stinks. It doesn't matter if you have a cold, the flu or a stomach bug, no one wants to be ill. Chronic illness is a difficult and unpleasant road, and I want off of it. There is rarely a day that goes by that I don't pray for God to heal me, to ease my pain, to make my body work right. I know that He is able. I started reading the book of Mark this morning, and although I have heard the story dozens of times, this morning it seemed to really touch my heart.

Mark 2:1-12 (ESV)

Jesus Heals a Paralytic

"And when he returned to Capernaum after some days, it was reported that he was at home. 2 And many were gathered together, so that there was no more room, not even at the door. And he was preaching the word to them. 3 And they came, bringing to him a paralytic carried by four men. 4 And when they could not get near him because of the crowd, they removed the roof above him, and when they had made an opening, they let down the bed on which the paralytic lay. 5 And when Jesus saw their faith, he said to the paralytic, “Son, your sins are forgiven.” 6 Now some of the scribes were sitting there, questioning in their hearts, 7 “Why does this man speak like that? He is blaspheming! Who can forgive sins but God alone?” 8 And immediately Jesus, perceiving in his spirit that they thus questioned within themselves, said to them, “Why do you question these things in your hearts? 9 Which is easier, to say to the paralytic, ‘Your sins are forgiven,’ or to say, ‘Rise, take up your bed and walk’? 10 But that you may know that the Son of Man has authority on earth to forgive sins”—he said to the paralytic— 11 “I say to you, rise, pick up your bed, and go home.” 12 And he rose and immediately picked up his bed and went out before them all, so that they were all amazed and glorified God, saying, “We never saw anything like this!”"

The paralytic man was brought to Jesus to be made well. Jesus tells him that his sins are forgiven. People hearing this, grumble, question, and accuse him of blasphemy. It was Jesus' response that really hit me this morning, and was a great reminder. Jesus asks "which is easier, to say to the paralytic, 'Your sins are forgiven,' or to say, 'Rise, take up your bed and walk'? 

Jesus had already told the man his sins are forgiven, but it wasn't until Jesus healed him that "all were amazed and glorified God." May it not be that I would be a person who seeks a healing, a simple sign, or the "easier" of the two. Today I was reminded that for Jesus, healing me is the lesser, just frosting on the cake if you will. What I should be doing is thanking God for doing the greater in my life. My sins are forgiven!! I am amazed!! May I bring glory to God by telling you all, that it is God alone who forgives sin, and He provided that through His Son, Jesus Christ.

It may not be a sin to want to be well (although it certainly can easily become sin), but I urge you to seek the greater and not the lesser. May we quit seeking wellness, relief, an easy life, or a quick fix! Turn from your sin and seek the One who can do both the greater and lesser. Remember that forgiveness of sins is the greater work in your life; the greater gift and blessing. May my longing to be something I am not (in my case made well, it may be something different for you), be replaced with gratitude for what I am. Praise be to God-

Until next time-