Tuesday, October 3, 2017

Onward and Upward!

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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!!

Tuesday, September 26, 2017

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.

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 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





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-
~Shari

Tuesday, June 13, 2017

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

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,
~Shari

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


Hmmmmm


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,
~Shari