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~
Shari

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~
Shari

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
~Shari

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!!

DNF

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-

~Shari

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.

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 leg.....it 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

~Shari

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-
~Shari

Bloodlines

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,
Shari