When my diagnosis was still a mystery and I was having major panic and feeling sick at church all the time, it was really hard to do my calling of leading the music in Relief Society (even though I love it!). I thought about quitting, but I stuck it out and found a sub if I couldn't "church" (<--verb) one day. Agoraphobia, guts, nausea, feeling faint, whatever.
Then treatment started, and I was totally dizzy and couldn't imagine staying upright while waving my arm, so I got a sub one week for that.
Then a few weeks passed while General and Regional Conferences happened. I got thinking. I got creative. This is my calling, and by gum, there had to be a way (see 1 Nephi 3:7).
Normally I stood in a space with lots of room and a music stand to hold the hymnbook. Then it occurred to me...
There's a sturdy table at the front of the room. I could ditch the stand, hold the hymnbook with all my buffness (I kid), and lean against the table to keep me knowing which way was up. Brilliant!
I tried it out the next time I led the music. It totally worked. Hot dog!! I win!
I knew that, worst case scenario, I could sit right on the table. Who would care? No one (as long as I sat like a lady, amiright?). I have almost sat the last two weeks, but a little shake of the knees keeps me from feeling like I'm going to faint. So that's cool. It works!
I guess I realized that there are creative ways to do a calling. I have permission and power to think outside the box and be unconventional. And so do you.
Sunday, November 16, 2014
I "Look Good" on Sundays!
Sundays are fantastic! Sure we wake up early for church and come home exhausted. But that leaves room for naps and visiting family later in the day, ba-BAM.
My treatment schedule makes it so Sundays are my very best days. My last treatment was three days before, so I'm maybe starting to function on Sundays and behave like a live human, which is cool. People even say I "look good," meaning healthy. (I'd like to give credit to real clothes, mascara, and the eyebrow pencil that make me not look like a ghost.:)
Here's what makes Sundays special for me ( besides the obvious and beautiful Sabbath observance).
I think the clearest on Sundays.
I get to wear my nicest clothes.
I put on a little makeup and dry my hair (a workout, but worth it for the day).
I.e. I LOOK ALIVE! I said that...er, others did.
My soul is fed with spiritual messages.
I get out and talking to others.
I serve in my calling.
I generally eat well.
I can take a nap.
I "jam" at home on my guitar while my taller half plays primary songs on the piano.
Sundays are blessed. I like 'em.
My treatment schedule makes it so Sundays are my very best days. My last treatment was three days before, so I'm maybe starting to function on Sundays and behave like a live human, which is cool. People even say I "look good," meaning healthy. (I'd like to give credit to real clothes, mascara, and the eyebrow pencil that make me not look like a ghost.:)
Here's what makes Sundays special for me ( besides the obvious and beautiful Sabbath observance).
I think the clearest on Sundays.
I get to wear my nicest clothes.
I put on a little makeup and dry my hair (a workout, but worth it for the day).
I.e. I LOOK ALIVE! I said that...er, others did.
My soul is fed with spiritual messages.
I get out and talking to others.
I serve in my calling.
I generally eat well.
I can take a nap.
I "jam" at home on my guitar while my taller half plays primary songs on the piano.
Sundays are blessed. I like 'em.
Tuesday, November 11, 2014
Positive Spin on Sick Days
Today I have been very sick. I kept to my bed in the yoga pants and baseball tee I wore last night while thoughtfully-prepared meals were brought to me. My children were lovingly tended by Grandma and Dad in turns.
All day, I weighed every physical effort carefully to see if I actually had to do it, like getting a drink or changing positions. It's just one of THOSE days. It's been awhile since I have been this physically wiped out.
I stop the self-destructive "why?" game in its tracks because I don't know the answers. I could make guesses about the maxed IV antibiotic dose, or the bee venom, or the diseases and genetic mutations in my body, or my dropping weight, or the food I did or didn't eat, or sleep issues, or great unknowns, or any number of things. But I REALLY don't know. And I kind of don't care.
There's a certain comfort about laying low and just not knowing. There's a peace about accepting myself as I am now. I feel negative feelings when I speculate, blame, try to force change, or pretend I feel well, so I generally choose not to go there.
Sick days can be blessed days. They are slow days and out of control days. They may pass, and the rigors of healthy days may come again. So I enjoy the forced slowness.
I honor my body by being slow and restful and allowing it to be sick.
Sickness is when the microscopic components of our bodies fight to the death for our wellness. They sacrifice everything to make us live.
I am grateful for the cells that fight for me and make me rest while they fight. I'm grateful for medicine and treatments that help them out.
I am grateful for my wonderful body. I can't direct the artillery consciously, cell by cell; but I trust those ranks of living cells that grow, fight, and die for me. They have intelligence to the level they need and are BRILLIANT at their jobs.
I know God is their General, and His Priesthood (given by blessings to me) is their Marching Orders.
Being sick is just another way God shows His love for me. I'm grateful for sick-in-bed days to remind me of this and the wonders of the human body that He created for me. He cares. He has control from the microscopic level to the boundless cosmos, but He cares about my little body. How Great is our Heavenly Father!!!
All day, I weighed every physical effort carefully to see if I actually had to do it, like getting a drink or changing positions. It's just one of THOSE days. It's been awhile since I have been this physically wiped out.
I stop the self-destructive "why?" game in its tracks because I don't know the answers. I could make guesses about the maxed IV antibiotic dose, or the bee venom, or the diseases and genetic mutations in my body, or my dropping weight, or the food I did or didn't eat, or sleep issues, or great unknowns, or any number of things. But I REALLY don't know. And I kind of don't care.
There's a certain comfort about laying low and just not knowing. There's a peace about accepting myself as I am now. I feel negative feelings when I speculate, blame, try to force change, or pretend I feel well, so I generally choose not to go there.
Sick days can be blessed days. They are slow days and out of control days. They may pass, and the rigors of healthy days may come again. So I enjoy the forced slowness.
I honor my body by being slow and restful and allowing it to be sick.
Sickness is when the microscopic components of our bodies fight to the death for our wellness. They sacrifice everything to make us live.
I am grateful for the cells that fight for me and make me rest while they fight. I'm grateful for medicine and treatments that help them out.
I am grateful for my wonderful body. I can't direct the artillery consciously, cell by cell; but I trust those ranks of living cells that grow, fight, and die for me. They have intelligence to the level they need and are BRILLIANT at their jobs.
I know God is their General, and His Priesthood (given by blessings to me) is their Marching Orders.
Being sick is just another way God shows His love for me. I'm grateful for sick-in-bed days to remind me of this and the wonders of the human body that He created for me. He cares. He has control from the microscopic level to the boundless cosmos, but He cares about my little body. How Great is our Heavenly Father!!!
Monday, November 10, 2014
Bee Stings for the Win!
Once upon a time, I was a little girl who had been stung by bees five separate times.
Each subsequent reaction was worse. The last of those stings was on the front of my ankle, and for a week my foot and ankle were nearly doubled in size.
In the retrospect of later years, I realized that I was allergic to bees. It was confirmed through testing that I was definitely allergic. With worsening reactions, I was advised to carry an epipen during warm weather for possible anaphylaxis.
Do you know how much those things cost? A lot! And how much stress I had around bees? A lot!
Years later still (and just last month), my current doctor recommended bee venom therapy to kick start the immune system and augment the functions of my other current therapies (I think?). I explained my history with bees and that I was allergic.
"Have you ever had throat swelling?" she inquired.
"Well, no."
"If you try this and do have an anaphylactic reaction, we have epinephrine ready. But know that no one I've ever given this to has had anaphylaxis. Pain, swelling, and itching, yes, but no throat swelling."
Aw, what the heck, I thought. "Go ahead." The worst I could do is die, which doesn't really intimidate me anymore, ha!
She injected bee venom under the skin of my lower back. It stung and swelled just like I remember with real bees. But I sat through some IV therapy in the office after that, and guess what! I didn't die!
NEAT.
I had three more injections of bee venom today. (We're working up to ten per session.)
And I didn't die--again!
You guys, this peace of mind is sa-WEET!! I love it! No more epipens. No more surges of alarm when a bee hovers around me (well, actually, give me time to work on that). Bees and I can be friends! We could maybe get a beehive, aaaaaw!
After that first injection, my back was swollen, but I felt at ease. I sat next to my alyssums, marigolds, and herbs as dozens of bees bopped around the countless blossoms. For the first time ever, I was happy those bees were there. Next year, I'll plant even more flowers for those bees to enjoy because I no longer need to avoid them. My lifelong fear of bees is gone!
Each subsequent reaction was worse. The last of those stings was on the front of my ankle, and for a week my foot and ankle were nearly doubled in size.
In the retrospect of later years, I realized that I was allergic to bees. It was confirmed through testing that I was definitely allergic. With worsening reactions, I was advised to carry an epipen during warm weather for possible anaphylaxis.
Do you know how much those things cost? A lot! And how much stress I had around bees? A lot!
Years later still (and just last month), my current doctor recommended bee venom therapy to kick start the immune system and augment the functions of my other current therapies (I think?). I explained my history with bees and that I was allergic.
"Have you ever had throat swelling?" she inquired.
"Well, no."
"If you try this and do have an anaphylactic reaction, we have epinephrine ready. But know that no one I've ever given this to has had anaphylaxis. Pain, swelling, and itching, yes, but no throat swelling."
Aw, what the heck, I thought. "Go ahead." The worst I could do is die, which doesn't really intimidate me anymore, ha!
She injected bee venom under the skin of my lower back. It stung and swelled just like I remember with real bees. But I sat through some IV therapy in the office after that, and guess what! I didn't die!
NEAT.
I had three more injections of bee venom today. (We're working up to ten per session.)
And I didn't die--again!
You guys, this peace of mind is sa-WEET!! I love it! No more epipens. No more surges of alarm when a bee hovers around me (well, actually, give me time to work on that). Bees and I can be friends! We could maybe get a beehive, aaaaaw!
After that first injection, my back was swollen, but I felt at ease. I sat next to my alyssums, marigolds, and herbs as dozens of bees bopped around the countless blossoms. For the first time ever, I was happy those bees were there. Next year, I'll plant even more flowers for those bees to enjoy because I no longer need to avoid them. My lifelong fear of bees is gone!
Thursday, November 6, 2014
Beauty in Opposition
I admit that sometimes finding gratitude is an intellectual and not a heartfelt effort.
I'm having such emotional pain about something that even the glad game feels futile. Even when I drum up that list of things to be glad about, I feel little sincerity. I think it's part of mourning sometimes to feel like what you have isn't right or enough.
The good part about days like today is that I have hope for tomorrow, or next year, or the next life. I know the glad game will work again after I've had my cry. I've had enough moments of despair to know that the sun does rise again on a fresh new opportunity to be okay. It warms my back and reminds me that, really, things are very wonderful.
I forgive myself for having a sad day, for bawling through this post, for forgetting the depth and magnitude of my blessings while I weep. Things will get better.
"Beloved, think it not strange concerning the fiery trial which is to try you, as though some strange thing happened unto you:
"But rejoice, inasmuch as ye are partakers of Christ’s sufferings; that, when his glory shall be revealed, ye may be glad also with exceeding joy." (1 Peter 4:12-13)
I am grateful for trials. Many of my prayers have been answered through trials--for patience, faith, strength, capacity, ability, empathy, kindness.
I want to remember the pain of this life. It is beautiful because it is the bitter contrast for all the good ahead. Trials and pain are kindnesses to us so we can understand exultant joy when it comes. I hope I don't look back on my life and find that I grumbled all the while and missed the gifts and beauty that God gave me in the form of difficulty and hard times.
I rejoice that moments of searing pain provide the contrast for the endless bliss that is to come.
"The Spirit itself beareth witness with our spirit, that we are the children of God:
"And if children, then heirs; heirs of God, and joint-heirs with Christ; if so be that we suffer with him, that we may be also glorified together.
"For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us." (Romans 8:16-18)
"While it may not come at the time we desire, the faithful will know that every tear today will eventually be returned a hundredfold with tears of rejoicing and gratitude." (Joseph B. Wirthlin, "Come What May and Love It," October 2008).
Everything God gives us is a good thing. I know the heartache I feel is not unique to just me and that we all struggle, but I'm willing to write about it. I hope you know your tears will be returned with rejoicing and gratitude, because they surely will.
I'm having such emotional pain about something that even the glad game feels futile. Even when I drum up that list of things to be glad about, I feel little sincerity. I think it's part of mourning sometimes to feel like what you have isn't right or enough.
The good part about days like today is that I have hope for tomorrow, or next year, or the next life. I know the glad game will work again after I've had my cry. I've had enough moments of despair to know that the sun does rise again on a fresh new opportunity to be okay. It warms my back and reminds me that, really, things are very wonderful.
I forgive myself for having a sad day, for bawling through this post, for forgetting the depth and magnitude of my blessings while I weep. Things will get better.
"Beloved, think it not strange concerning the fiery trial which is to try you, as though some strange thing happened unto you:
"But rejoice, inasmuch as ye are partakers of Christ’s sufferings; that, when his glory shall be revealed, ye may be glad also with exceeding joy." (1 Peter 4:12-13)
I am grateful for trials. Many of my prayers have been answered through trials--for patience, faith, strength, capacity, ability, empathy, kindness.
I want to remember the pain of this life. It is beautiful because it is the bitter contrast for all the good ahead. Trials and pain are kindnesses to us so we can understand exultant joy when it comes. I hope I don't look back on my life and find that I grumbled all the while and missed the gifts and beauty that God gave me in the form of difficulty and hard times.
I rejoice that moments of searing pain provide the contrast for the endless bliss that is to come.
"The Spirit itself beareth witness with our spirit, that we are the children of God:
"And if children, then heirs; heirs of God, and joint-heirs with Christ; if so be that we suffer with him, that we may be also glorified together.
"For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us." (Romans 8:16-18)
"While it may not come at the time we desire, the faithful will know that every tear today will eventually be returned a hundredfold with tears of rejoicing and gratitude." (Joseph B. Wirthlin, "Come What May and Love It," October 2008).
Everything God gives us is a good thing. I know the heartache I feel is not unique to just me and that we all struggle, but I'm willing to write about it. I hope you know your tears will be returned with rejoicing and gratitude, because they surely will.
Tuesday, November 4, 2014
The Gifts of Being a Sick Mom
Before I knew I had Lyme disease, I blamed feeling unwell on so many things relating to the strains of new motherhood and working full time. These were the scapegoats for feeling so sick and not being as active as I wanted to be in my little family and not getting things done around the house.
I gave any energy I had to work, and my family got the leftovers (the totally chewed up, spit out, chronically ill version of me: ew). This was a hideous feeling for me, knowing that all I ever wanted to be was a full-time, stay-at-home mother. But I did what had to be done for the survival of my family, willing to be their figurative martyr...until I realized my actual life was on the line!
The hardest part about realizing I had an actual illness and admitting I am a sick mom was the guilt about not being a better mom and wife. I read articles about how to entertain the kids when you have a sick DAY, like abolishing screen time limits, ordering food in, and hiring people to do stuff for you. Maybe that works for some moms...but what if you have a sick or impaired LIFE?
I started searching for positives of being a sick, impaired mom, truly not knowing yet if this was to be a temporary or permanent state for me in this life. (Actually, I still don't know, but I have the Savior's peace and am not worried!)
Someone told me that Heavenly Father knew what I would pass through, and He EQUIPPED my children to be able to handle being in this family. This is true: they have thrived all the way. I have such comfort knowing this, knowing I'm doing my best, and it is good enough for my children right now. They have all the coping mechanisms and abilities to handle being in our family during its ups and downs. And likewise, I actually have all the abilities I need to mother this family from where I am, right now.
I feel like my children have become more self reliant. They have learned to get their own snacks and make (sloppy, but yummy) sandwiches. They have inherently learned what foods are good and bad for our bodies from the way we eat. They are becoming more obedient about coming inside from playing the first time we call, knowing there are reasons to be inside, even it's just so I can lie down. They realize the cleanliness of their living space relies solely on them because I don't pick up after them much, and they choose whether to live in order or filth. They have earned my trust when I tell them not to answer the door while nap on the couch or shower. They carry their own things in from the car a little better, enjoy outings a little more, and have respect for my abilities when they ask, "Mom, can we play outside for ten minutes?" I can sometimes watch them outside for that length of time. When I say I cannot let them out because I can barely lift my head, they rarely pout anymore and instead play in the unfinished basement with glee. (Get them around their softer Grandparents though, and they'll make a bigger fuss!:)
These are big lessons and big compromises for young children, but I think I've accidentally or intentionally given them self discipline and freedom by being instructive and present, but not always physically active to intervene (as uncomfortable as that can be for me).
As for me, I have been able to enjoy blessings of being a sick mom too. I am being forced to rest...oh, what a gift. (Though, I have a hard time being completely still and usually have a small project in my hands.)
There are other blessings. I like watching my children develop into thinkers and doers. My children get way more time on my lap reading books than they ever could if I was busy getting things done. I have been able to reorganize my priorities. I have let go of some of my pride regarding house cleanliness, my physical appearance, and thinking can do everything. It's liberating and a beautiful gift. It's perfect for right now.
There really are blessings in everything God gives us. I am grateful Heavenly Father could turn my needless guilt into His comforting assurance. I know now that all is well and exactly as it should be.
It takes adjusting your perspective, but His grace turns every stumbling block into a stepping stone.
I gave any energy I had to work, and my family got the leftovers (the totally chewed up, spit out, chronically ill version of me: ew). This was a hideous feeling for me, knowing that all I ever wanted to be was a full-time, stay-at-home mother. But I did what had to be done for the survival of my family, willing to be their figurative martyr...until I realized my actual life was on the line!
The hardest part about realizing I had an actual illness and admitting I am a sick mom was the guilt about not being a better mom and wife. I read articles about how to entertain the kids when you have a sick DAY, like abolishing screen time limits, ordering food in, and hiring people to do stuff for you. Maybe that works for some moms...but what if you have a sick or impaired LIFE?
I started searching for positives of being a sick, impaired mom, truly not knowing yet if this was to be a temporary or permanent state for me in this life. (Actually, I still don't know, but I have the Savior's peace and am not worried!)
Someone told me that Heavenly Father knew what I would pass through, and He EQUIPPED my children to be able to handle being in this family. This is true: they have thrived all the way. I have such comfort knowing this, knowing I'm doing my best, and it is good enough for my children right now. They have all the coping mechanisms and abilities to handle being in our family during its ups and downs. And likewise, I actually have all the abilities I need to mother this family from where I am, right now.
I feel like my children have become more self reliant. They have learned to get their own snacks and make (sloppy, but yummy) sandwiches. They have inherently learned what foods are good and bad for our bodies from the way we eat. They are becoming more obedient about coming inside from playing the first time we call, knowing there are reasons to be inside, even it's just so I can lie down. They realize the cleanliness of their living space relies solely on them because I don't pick up after them much, and they choose whether to live in order or filth. They have earned my trust when I tell them not to answer the door while nap on the couch or shower. They carry their own things in from the car a little better, enjoy outings a little more, and have respect for my abilities when they ask, "Mom, can we play outside for ten minutes?" I can sometimes watch them outside for that length of time. When I say I cannot let them out because I can barely lift my head, they rarely pout anymore and instead play in the unfinished basement with glee. (Get them around their softer Grandparents though, and they'll make a bigger fuss!:)
These are big lessons and big compromises for young children, but I think I've accidentally or intentionally given them self discipline and freedom by being instructive and present, but not always physically active to intervene (as uncomfortable as that can be for me).
As for me, I have been able to enjoy blessings of being a sick mom too. I am being forced to rest...oh, what a gift. (Though, I have a hard time being completely still and usually have a small project in my hands.)
There are other blessings. I like watching my children develop into thinkers and doers. My children get way more time on my lap reading books than they ever could if I was busy getting things done. I have been able to reorganize my priorities. I have let go of some of my pride regarding house cleanliness, my physical appearance, and thinking can do everything. It's liberating and a beautiful gift. It's perfect for right now.
There really are blessings in everything God gives us. I am grateful Heavenly Father could turn my needless guilt into His comforting assurance. I know now that all is well and exactly as it should be.
It takes adjusting your perspective, but His grace turns every stumbling block into a stepping stone.
Monday, November 3, 2014
I'll Always Be Here
There are currently three or four posts on the docket for posting, but they need revision and honing before being published.
IV treatments make my Lyme brain flare up and cause forgetfulness, fogginess, indecisiveness, difficulty focusing, etc., more than usual. It takes two to three days to feel more normal in my brain after a treatment. Thus I have one to two clear-brain days per week, and that is usually when I can focus enough to write. I love writing, butI like it even better when it makes sense. :)
Yesterday was a good brain day, but I used it to write fifteen pages of notes for a class I am teaching later this week.
I just wanted you to know that I am not a neglectful blogger. I think of this blog every day. This blog is a history and will not drop off the earth.
I had a treatment today, but if I get a good moment of clarity, I'll revise and publish one of those posts for you! :) They require more TLC before being viewed.
As an update though, things are going as expected. I feel ew, but it's just a sign that I'm on the road to feeling better. I am enjoying it and feel so grateful to be doing something to help me get better.
My PICC line has been so helpful, and I really appreciate having easy venous access. Later this week I get to hang my own IV from home as the office is closed. The only issue I've had is that the area around the PICC line has been itching since my last dressing change. I don't think my skin likes this kind of dressing. I'm going in today for a different dressing, and I bet I'll be right as rain after that.
That's the scoop for today. I have received so many kind comments and encouraging words from you. Thank you so much. It's an honor to be open with you and maybe exhibit some vulnerability. Isn't that what connects us together as humans, to be (appropriately) open and vulnerable with each other? Thank you for being that way with me too.
IV treatments make my Lyme brain flare up and cause forgetfulness, fogginess, indecisiveness, difficulty focusing, etc., more than usual. It takes two to three days to feel more normal in my brain after a treatment. Thus I have one to two clear-brain days per week, and that is usually when I can focus enough to write. I love writing, butI like it even better when it makes sense. :)
Yesterday was a good brain day, but I used it to write fifteen pages of notes for a class I am teaching later this week.
I just wanted you to know that I am not a neglectful blogger. I think of this blog every day. This blog is a history and will not drop off the earth.
I had a treatment today, but if I get a good moment of clarity, I'll revise and publish one of those posts for you! :) They require more TLC before being viewed.
As an update though, things are going as expected. I feel ew, but it's just a sign that I'm on the road to feeling better. I am enjoying it and feel so grateful to be doing something to help me get better.
My PICC line has been so helpful, and I really appreciate having easy venous access. Later this week I get to hang my own IV from home as the office is closed. The only issue I've had is that the area around the PICC line has been itching since my last dressing change. I don't think my skin likes this kind of dressing. I'm going in today for a different dressing, and I bet I'll be right as rain after that.
That's the scoop for today. I have received so many kind comments and encouraging words from you. Thank you so much. It's an honor to be open with you and maybe exhibit some vulnerability. Isn't that what connects us together as humans, to be (appropriately) open and vulnerable with each other? Thank you for being that way with me too.
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