In order to repair my face and get the feeling back in my left side, I had to have infusions. The nurse came by the first night with infusion services. She started an IV and showed us how to hook up all the medicines. It's pretty amazing what they can do. She had everything for us to use at our house so I wouldn't have to go anywhere, but I could still get the needed medication each day.
I had my first dose of steroids, 1000 mg of something that starts with an "S." Before they injected the steroids, they needed to inject saline that cleans everything out. The IV had to stay in my arm until all the doses were complete. It would last about 3 days.
My muscles were twitchy the first night and I had a difficult time falling asleep. I kept half waking up. I was always very aware of where my IV arm was. I actually tossed and turned. I figured I would probably sleep great once the IV was removed.
I am often reminded that I take pride in my capabilities because that is my greatest humbling experience. I am weak, He is strong. I will lean on Him with all my might. I will hold on tight and I know that He will hold tighter so if I am too weak, He will not let me fall.
I knew all this, yet I cried. I knew that I would be okay. I knew that God was strong enough for my weakness, but I still cried. As I cried for my weakness, I knew I needed to remember His strength. As Paul said, when I am weak, yet He is strong, I knew I would only make it through the day because He is strong.
I don't remember God's faithfulness until I am weak and falling. I don't remember how He holds me up until I can't hold myself anymore. Knowing that He has me all the time and not simply when I am struggling is something I need to remind myself to be thankful for.
Wednesday, October 11, 2017
Monday, October 9, 2017
Burnt Trees
There were many forest fires this summer. One devastating forest fire burned to the edge of the highway we travel to go to our favorite vacation spot. I knew the fire had been there so I was hunting for the signs it left behind as we drove.
The first thing I noticed when I found the charred and dead trees were the fully green and alive trees standing next to them. One tree would be covered with dead, orange pine needles and the tree next to it would be completely green with only a little charred bark on its trunk. This happened repeatedly. It was difficult to see the fire's path because there were so many live trees mixed in with the damaged and dead ones. I wondered, why do some trees stand strong while others are damaged beyond repair? What made that tree come out of the fire standing tall with its green needles while the one 10 feet away died and now stands only because its roots are still in the ground?
Was it resilience? Was one tree more prepared for hardship than another? Did one tree have more strength or nutrients inside than the other?
Was it luck? Did the path of the fire simply go around those healthy trees? Did it burn smaller when it came near them?
Was it outside help? Were the fire fighters able to intervene in some cases and save one tree, but not another? Did the plane or the helicopter happen to drop the fire retardant in just the right place so that one tree lived and another didn't?
Or was it location? Did some trees happen to be in a more direct path while others were on the outskirts? Were some areas more densely populated with underbrush and the trees couldn't do anything else but burn because of the fire that burned around them?
Perhaps it was a little of everything.
We are often those trees. We are battling fires all of the time. All the same factors that affect those trees affect us. The difference is that we have feet and we can have determination. A tree cannot.
We have a choice. Perhaps everything is against us. We are not resilient, we have bad luck, there is no one to help us, we are always in the wrong place at the wrong time. If all of this is true we still have the ability to have determination. We can choose to stand. We can choose to walk to a safe place. We can choose to survive and thrive. We don't have to stand and take it like the trees and hope that we will make it through, we can choose that we will make it and we won't fall.
My favorite part about observing those trees on our trip was that right now the dead trees are camouflaged by the fall colors. I was looking for them so I found them, but if you were simply driving along the road you wouldn't be able to pick out the dead trees because their orange needles help them blend in with all the other trees that are turning for the season.
Whether the trees were dead or alive, it was beautiful. We don't have to be perfect or all put together to be beautiful.
The first thing I noticed when I found the charred and dead trees were the fully green and alive trees standing next to them. One tree would be covered with dead, orange pine needles and the tree next to it would be completely green with only a little charred bark on its trunk. This happened repeatedly. It was difficult to see the fire's path because there were so many live trees mixed in with the damaged and dead ones. I wondered, why do some trees stand strong while others are damaged beyond repair? What made that tree come out of the fire standing tall with its green needles while the one 10 feet away died and now stands only because its roots are still in the ground?
Was it resilience? Was one tree more prepared for hardship than another? Did one tree have more strength or nutrients inside than the other?
Was it luck? Did the path of the fire simply go around those healthy trees? Did it burn smaller when it came near them?
Was it outside help? Were the fire fighters able to intervene in some cases and save one tree, but not another? Did the plane or the helicopter happen to drop the fire retardant in just the right place so that one tree lived and another didn't?
Or was it location? Did some trees happen to be in a more direct path while others were on the outskirts? Were some areas more densely populated with underbrush and the trees couldn't do anything else but burn because of the fire that burned around them?
Perhaps it was a little of everything.
We are often those trees. We are battling fires all of the time. All the same factors that affect those trees affect us. The difference is that we have feet and we can have determination. A tree cannot.
We have a choice. Perhaps everything is against us. We are not resilient, we have bad luck, there is no one to help us, we are always in the wrong place at the wrong time. If all of this is true we still have the ability to have determination. We can choose to stand. We can choose to walk to a safe place. We can choose to survive and thrive. We don't have to stand and take it like the trees and hope that we will make it through, we can choose that we will make it and we won't fall.
My favorite part about observing those trees on our trip was that right now the dead trees are camouflaged by the fall colors. I was looking for them so I found them, but if you were simply driving along the road you wouldn't be able to pick out the dead trees because their orange needles help them blend in with all the other trees that are turning for the season.
Whether the trees were dead or alive, it was beautiful. We don't have to be perfect or all put together to be beautiful.
Saturday, October 7, 2017
Orange Story: Spreading the News
The day after I was officially diagnosed with MS, I went back to work. I was leading a meeting and began going through the agenda as if nothing was amiss. Everyone was staring at me oddly. I realized I had to come clean. That is what it felt like. I knew I was simply sharing my situation, but it felt like I was revealing a secret. I explained what happened with me. I explained my sagging face, the MRI and the official MS diagnosis.
I got a lot of prayer and sorry messages from everyone. They were so kind and encouraging. I only had one person tell me about someone else she knows who has been doing fine on MS for many years. I realized people say those kinds of things to make them feel better, they want to imagine everything will be okay and not have to worry. They forget that at this moment I feel terrible so it doesn't matter if I will be fine in a month or not. Their words only show me how far they are from knowing me.
Since I was talking funny, I had to tell my students what was happening. They handled it as well as 9 year-olds handle news like that. A few of them would continue to worry about me for the next few months.
It was exhausting to talk and walk and move so I left at 1:45. My principal had made it clear that he would do whatever I needed, I just needed to tell him. So, I walked into his office at a quarter to two and said, "I'm ready to go home now." It took every ounce of humble pie to admit I was finished for the day.
I had tried lying down under my desk for a few minutes to rest, it only brought tears so I figured I should go home. I bawled all the way home. It is frustrated to be halted by your brain. I tried to do things without realizing I couldn't actually do them. I was uncontrollably dropping things or running into walls because I didn't know where the left side of my body was. I tried to scrape food off my plate into the trash and dropped my entire plate in the trash instead. My daughter and I laughed. She finished the job for me. In the upcoming years she would continue to help me. I'm as grateful as can be that this happened to my left side and not my right side.
I cried over the loss of what I had. My dog, sensing my grief, licked my hand. I would choose to venture down this path one day at a time just like all the other times.
I got a lot of prayer and sorry messages from everyone. They were so kind and encouraging. I only had one person tell me about someone else she knows who has been doing fine on MS for many years. I realized people say those kinds of things to make them feel better, they want to imagine everything will be okay and not have to worry. They forget that at this moment I feel terrible so it doesn't matter if I will be fine in a month or not. Their words only show me how far they are from knowing me.
Since I was talking funny, I had to tell my students what was happening. They handled it as well as 9 year-olds handle news like that. A few of them would continue to worry about me for the next few months.
It was exhausting to talk and walk and move so I left at 1:45. My principal had made it clear that he would do whatever I needed, I just needed to tell him. So, I walked into his office at a quarter to two and said, "I'm ready to go home now." It took every ounce of humble pie to admit I was finished for the day.
I had tried lying down under my desk for a few minutes to rest, it only brought tears so I figured I should go home. I bawled all the way home. It is frustrated to be halted by your brain. I tried to do things without realizing I couldn't actually do them. I was uncontrollably dropping things or running into walls because I didn't know where the left side of my body was. I tried to scrape food off my plate into the trash and dropped my entire plate in the trash instead. My daughter and I laughed. She finished the job for me. In the upcoming years she would continue to help me. I'm as grateful as can be that this happened to my left side and not my right side.
I cried over the loss of what I had. My dog, sensing my grief, licked my hand. I would choose to venture down this path one day at a time just like all the other times.
Friday, October 6, 2017
How to Have a Good Day
I didn't think I had anything to say today. I feel like I've said the same thoughts over and over. I keep having the same thoughts. I keep relearning the same lessons. I keep learning what I can do and what I can't. I keep learning what makes me strong and what makes me weak. I keep learning and relearning how to be victorious over a day.
I suppose that is what I have to say. Not every day will go well. Not every moment will feel amazing. If we were to keep count, there are probably more tough days and difficult moments than the other way around, but that doesn't matter as much as the victory over the difficult moment or the strength we gather from the tough day.
It is a battle. It is a battle to remain strong, to stand firm, to find joy, and to achieve victory. We must not weary in engaging in this battle. We must not weary in moving forward. When our arms are tired from carrying the load, we have to learn what part of the load we can leave behind. When are legs are weary from the climb, we must look for an alternate route that will still get us there, but not beat us up too much along the way. When our mind is overwhelmed with the lists and the tasks, we have to learn how to rejoice in what we have accomplished rather than beat ourselves up over what remains on the list.
I say we, I am still daily learning how to successfully balance all these things and make my load just right for what I can do. I am still learning which steps to take and which pieces to lay down. The only truly bad day will be the day that I didn't learn, try, or venture into the difficult. Good days aren't the easy days. Good days are the days where we didn't stop fighting.
I suppose that is what I have to say. Not every day will go well. Not every moment will feel amazing. If we were to keep count, there are probably more tough days and difficult moments than the other way around, but that doesn't matter as much as the victory over the difficult moment or the strength we gather from the tough day.
It is a battle. It is a battle to remain strong, to stand firm, to find joy, and to achieve victory. We must not weary in engaging in this battle. We must not weary in moving forward. When our arms are tired from carrying the load, we have to learn what part of the load we can leave behind. When are legs are weary from the climb, we must look for an alternate route that will still get us there, but not beat us up too much along the way. When our mind is overwhelmed with the lists and the tasks, we have to learn how to rejoice in what we have accomplished rather than beat ourselves up over what remains on the list.
I say we, I am still daily learning how to successfully balance all these things and make my load just right for what I can do. I am still learning which steps to take and which pieces to lay down. The only truly bad day will be the day that I didn't learn, try, or venture into the difficult. Good days aren't the easy days. Good days are the days where we didn't stop fighting.
Wednesday, October 4, 2017
Orange Story: Walking Through Tsunami Winds
Almost 2 years to the date of my final radiation treatment, I was diagnosed with MS on January 26, 2015.
It was another bump in the road that I would have to figure out, another thing to let God help me through. He is faithful and always does.
After my doctor's appointment, my husband and I had breakfast. He shared with me that I was his hero. He said he wasn't used to people rising up in the face of illness, he was used to them laying down. He said he was amazed by me.
I'm thankful God gives me the grace to be strong and to do the best with what I have. I've always admired people who seem so strong and amazing when you know life is dealing them the worst hand and I've wondered if I could be that strong. Could I stand and not be taken out? Could I be gracious and steady in the face of adversity?
I called and gave my dad the news, he said he was sorry. I'm thankful I can share this with him. We have the same hair, same eyes and same disease.
My grandma was sad, my brother had questions, my mom thought I was having a more difficult time than I thought I was because I sounded funny on the phone. I was still having a difficult time talking.
I knew I would be okay. No one needed to worry. At the time that I discovered I had MS, I felt that I would prefer MS to cancer any day.
The diagnosis, the initial information, is difficult to take. The news wants to knock you over like a tsunami, but you know if you fall, you may never get back up. If you fall, you may get left on the ground. Everyone else is shocked too. Everyone else is trying to hold themselves up. The best thing to do is lean into the wind and keep moving one slow step at a time. Eventually the wind has to let up a little.
It was another bump in the road that I would have to figure out, another thing to let God help me through. He is faithful and always does.
After my doctor's appointment, my husband and I had breakfast. He shared with me that I was his hero. He said he wasn't used to people rising up in the face of illness, he was used to them laying down. He said he was amazed by me.
I'm thankful God gives me the grace to be strong and to do the best with what I have. I've always admired people who seem so strong and amazing when you know life is dealing them the worst hand and I've wondered if I could be that strong. Could I stand and not be taken out? Could I be gracious and steady in the face of adversity?
I called and gave my dad the news, he said he was sorry. I'm thankful I can share this with him. We have the same hair, same eyes and same disease.
My grandma was sad, my brother had questions, my mom thought I was having a more difficult time than I thought I was because I sounded funny on the phone. I was still having a difficult time talking.
I knew I would be okay. No one needed to worry. At the time that I discovered I had MS, I felt that I would prefer MS to cancer any day.
The diagnosis, the initial information, is difficult to take. The news wants to knock you over like a tsunami, but you know if you fall, you may never get back up. If you fall, you may get left on the ground. Everyone else is shocked too. Everyone else is trying to hold themselves up. The best thing to do is lean into the wind and keep moving one slow step at a time. Eventually the wind has to let up a little.
Monday, October 2, 2017
October 1st
Yesterday was October 1st. For most of the day I didn't think much about the date. I was aware that it was the beginning of October which isn't my favorite month. There are two many scary commercials, scary movies and scary costumes in one month. I was disappointed the football players weren't wearing pink. The date probably snuck up on them.
For a small second I remembered that it was 5 years ago yesterday that I was told I had breast cancer. I'm thankful that it was 5 years ago. I'm thankful for all that I can do now that was a question at the time.
Most of all, I'm thankful that October 1, 2012 and the events that followed made me slow down. They made me look and see and breathe. They made me put myself first instead of last. They made me become aware of what is most important and gave me the ability to choose what is most important rather than what was simply in front of me.
For a small second I remembered that it was 5 years ago yesterday that I was told I had breast cancer. I'm thankful that it was 5 years ago. I'm thankful for all that I can do now that was a question at the time.
Most of all, I'm thankful that October 1, 2012 and the events that followed made me slow down. They made me look and see and breathe. They made me put myself first instead of last. They made me become aware of what is most important and gave me the ability to choose what is most important rather than what was simply in front of me.
Sunday, October 1, 2017
Orange Story: Moving Slowly
My face felt freaky. It felt crooked. Whether I wanted to or not, drool and tears leaked out of the left side of my face. My left hand had trouble doing things without me concentrating. It's very surreal to not be able to blindly move your body. This whole thing was surreal.
I wasn't quite broken yet, a bit of me kept venturing down the path of, "Oh no, now what?" Then I came back and dealt with the present and reminded myself I was strong enough.
MS is essentially when your immune system attacks the protective covering over your nerves. This covering is called the myelin sheath and it allows electrical impulses to transmit quickly and efficiently along the nerve cells. The connection gets messed up when the protective covering is damaged. The messages don't get where they are supposed to go. I understood this, but at this time I was experiencing it. I couldn't control parts of my body, my arm and face, the way I was used to. Fleeting seconds of freak out where quickly squelched by the reminder that I had to keep moving and any sort of panic wouldn't change my situation. I didn't know for sure that MS was causing my issues, but it didn't matter. I couldn't function the same way I was used to.
Don't take anything for granted: the ability to smile, to walk or run, to fold clothes, to hold something in your hand, to type, to talk, to swallow. . . I was much slower doing these things the day after I had been to the hospital. My smile was crooked. My left hand required concentration to operate, if I didn't concentrate it would do things like tip the cup I was holding or stop midway when trying to put my hair behind my ear. Activities that I could do while doing something else were much more difficult. I tried to type substitute plans, it was extremely difficult, my hand wouldn't obey me.
In my head I told myself it was MS, but it could have been something else. Either way I was less capable. I was crying yesterday because it was difficult to fold clothes. I apparently still took pride in my capabilities because when they are taken away or reduced I am quickly humbled.
I was thankful it was my left hand and not my right. I was thankful for loving family and friends. I was also scared about the unknown, the future, tomorrow. . . I tried to make a phone call. It was difficult to talk on the phone because I couldn't hold it to my ear.
I had to trust and know I would be okay whatever the ultimate outcome.
I wasn't quite broken yet, a bit of me kept venturing down the path of, "Oh no, now what?" Then I came back and dealt with the present and reminded myself I was strong enough.
MS is essentially when your immune system attacks the protective covering over your nerves. This covering is called the myelin sheath and it allows electrical impulses to transmit quickly and efficiently along the nerve cells. The connection gets messed up when the protective covering is damaged. The messages don't get where they are supposed to go. I understood this, but at this time I was experiencing it. I couldn't control parts of my body, my arm and face, the way I was used to. Fleeting seconds of freak out where quickly squelched by the reminder that I had to keep moving and any sort of panic wouldn't change my situation. I didn't know for sure that MS was causing my issues, but it didn't matter. I couldn't function the same way I was used to.
Don't take anything for granted: the ability to smile, to walk or run, to fold clothes, to hold something in your hand, to type, to talk, to swallow. . . I was much slower doing these things the day after I had been to the hospital. My smile was crooked. My left hand required concentration to operate, if I didn't concentrate it would do things like tip the cup I was holding or stop midway when trying to put my hair behind my ear. Activities that I could do while doing something else were much more difficult. I tried to type substitute plans, it was extremely difficult, my hand wouldn't obey me.
In my head I told myself it was MS, but it could have been something else. Either way I was less capable. I was crying yesterday because it was difficult to fold clothes. I apparently still took pride in my capabilities because when they are taken away or reduced I am quickly humbled.
I was thankful it was my left hand and not my right. I was thankful for loving family and friends. I was also scared about the unknown, the future, tomorrow. . . I tried to make a phone call. It was difficult to talk on the phone because I couldn't hold it to my ear.
I had to trust and know I would be okay whatever the ultimate outcome.
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