Saturday, January 13, 2018

Wait and See

Thursday morning started like any other, except my left eye was irritated and my vision seemed a little blurry. Yesterday I woke up, and it was worse. I quickly noticed that when I covered my right eye, everything seemed dimmer and gray. My eye ball actually hurts, not a lot mind you, but enough that I feel it, and that isn't normal. The medical geek in me decided to do a pupil reaction test to light, and quickly discovered that my left pupil dilated (it should constrict) when I shined a light in my eye. The right side seems normal. This concerned me enough to call my optometrist and go see her a couple hours later.

She confirmed that I had "afferent pupillary defect" (pupil dilates instead of contracts), and that my left optic nerve was larger than the right. With the other test results, symptoms, and my complex medical history, she said she thought it was Optic Neuritis. She called the neuro-ophthalmologist at Aurora Eye Clinic, and they squeezed me in an hour later. This doctor (who was wonderful by the way), said she thinks it is likely Optic Neuritis, but my vision had not deteriorated enough to justify the normal treatment plan of 3-day IV steroids, which will make me "very sick" according to her, inpatient at a hospital. I am supposed to call immediately if anything changes, and I will see her again next Friday. She said I may have caught it early enough that it hasn't gotten that bad yet. Symptoms sometimes develop over 7 days or so.

So we wait and see. At least I hope I still see. Thinking a lot yesterday about how we take for granted so many things our body does with ease, until it doesn't. I watch people breeze up a set of stairs without a second thought, and I wish I had been more thankful for that ability. Now, I look around and see beautiful colors, and am thankful for my vision. May I encourage you today to take a step back, look around, and spend some time being grateful for some of the functions your body performs without a second thought.

"I will praise you, 
for I am fearfully and wonderfully made;
Marvelous are Your works,
and that my soul knows very well."
~Psalm 139:4

Please pray that whatever is going on clears up on its own without getting worse. If things do progress, pray that I will catch it early and the treatment would be effective, without making me "very sick."

I stumbled upon this song this morning by Chris Tomlin, and am so very thankful that God is "sovereign in my greatest joy, sovereign in my deepest cry." Be encouraged, in whatever you are facing today, if you are in Christ, God is with you.

Until next time-

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.