Thursday, October 9, 2008

Week In The Life, Part 4

In the spirit of keeping it real, this is the post I have no idea how to write. I want to be honest, but I don't want to be a complainer. The whole point of this project was to give you all a glimpse into my real life, but even I don't like to think about my reality more than I have to... and if it's not fun for me to look at, it certainly won't be that much fun for you to read about.

So in anticipation of that, I'll just let you know that tomorrow's post will be all about Riley, and that should keep you smiling through this fourth installment, Dealing with Disease:

Picture1

Might as well just kick it off with a bang. That top photo is of my daily medications. As I was sitting with friends at Panera a few years back and opened my purse to take my meds, my friend Nick cracked himself up joking that I should get one of those old lady pill keepers. Imagine his surprised when that's exactly what I pulled out of my purse! :) As you can see in the second photo I have my days-of-the-week pill cases (not to be confused with days-of-the-week underwear that I had in grade school), and they are separated into Breakfast, Lunch, Supper and Night. My niece was very impressed with the night dosage when she watched me take a handful of 11 pills in one swallow.

I'm a professional, people, don't try that at home.

The bottom photo is of my nebulizer, which has gotten a lot of use this summer the few times I've had to venture outside and I've reacted to the air.

My reality is that I have to take medications to help my body sleep, eat, breathe, go to the bathroom, move my joints and fight off pain. Nothing in my body can't be touched by inflammation, and while it seems like these meds aren't helping that much considering my current situation, when I've had to go off of them for periods of time I've realized just how much they do help. It's hard for people who see me to believe, but my pain could actually be much worse.

There are medications out there that can help the disease more than the ones I'm taking, but my body has developed reactions to all of them. Many have been allergic reactions where I can't breathe and my throat starts to swell shut. Others that I've tried caused migraines three to four days a week. So for now I'll stick with the myriad of drugs I take and hope that someday there will be one that my body hasn't figured out how to reject yet.

Picture5

Next up are my "living aids" as they are referred to by the doctor. The top photo shows my cane and my handy-dandy crutches. The cane I can get by with on very few occasions around my house, but mostly I'm on the crutches. Those ergonomic crutches have been an absolute God-send, and they have spring-like shock absorbers built in so when I push down with my hands they have some give. It really does make a huge difference since my shoulders, neck and upper back are just as impacted as my hips and legs.

Even if some part of me is feeling a little better or I think I can get away with the cane, it's safer for me to stick with the crutches because any joint can flare at any time. I can suddenly not be able to move or put pressure on my ankle, or my hip and knee will flare with pain... and that could change again in 10 minutes. So sometimes the crutches are as much for stability and balance when the odd pain pops up as they are for easing the pressure on my hips.

The second photo is of my grabber to get things off the floor or high places... although Tyler enjoys using it to take Riley's toys and move them from one room to another. :) It only makes sense that in my house their favorite toys are the grabber and the old canes and crutches shown in the last photo. Needless to say the little ones are quite accustomed to my limitations.

Picture2

Oh... here's my favorite! My super-duper handy walk-in tub. You can read more about how I got it by clicking on this link, but basically it's my own version of heaven in my home. I hadn't been able to get in and out of a tub in a long time so having the ease of the walk-in feature, as well as all of the safety bars, has been great. Add in the hot water heater I got for my birthday and you get one happy girl soaking. Between the heat and the buoyancy of the water, it's really when my body feels best.

Picture8

Since the episode where my friend Jenny about had a heart attack over my little Lifeline malfunction, looking at this contraption cracks me up. I'm supposed to wear that little button on my wrist and if I ever need help I hit it and the Lifeline people speak through the box in the top photo and ask if I need help. I cannot imagine a situation that would be bad enough for me to actually hit the button and endure the inevitable "She's fallen and she can't get up!" jokes that would ensue, but it's nice to know I have it if I need it. (Actually nicer for my mother to have her mind at ease that I have it if I need it.) :)

Picture7

Here is the little exercise corner of my house. Across the room is the TV that shows my episodes of Alias to keep my mind diverted while I try to do different stretches and exercises on the therapy ball, as well as the elliptical machine. The elliptical, I'm convinced, is the only reason I'm still walking at all. It has a bit of rebound to the step so it helps my body do the motion, and keeps my hips mobile. I used to actually work out on the machine, but now it's less about exercise and more about short little bursts of keeping my hips and knees moving. I had saved up some money a few years back to buy a much cheaper model at Walmart. My friends Meg and Kelly came with a van to help me get it, and had with them extra money to take me to Scheel's and get this one instead. I still have no idea who all pitched in for it... they knew I would fight them on it and wanted me to take it without guilt. (My friends know me well.) So, if you are reading this and had something to do with it, know I say a little prayer for you every time I get on it... even when I'm swearing about having to do it. :)

When I was at the rheumatologist's office last time he asked me if I do any stretching, and I told him the things I do on the therapy ball. He seemed surprised and said, "Oh, you're able to try that?" I assume he thought the pain would be too much. After we left I told mom that if I knew he didn't think I could do it I would have stopped a long time ago! I know it's not optional, though, so I do the best I can.

Picture6

And these photos are representative of the people who help me function. The top photo is of the groceries that Linda gets and delivers for me every Wednesday [she declined to stand next to them in the photo :)]. The second photo is of Ron, my self-proclaimed drug dealer. He's been delivering my prescriptions to me for about two years, and it's just been in the last few months that Riley has finally stopped trying to bite him! The photo makes it look like Riley is still giving him the evil eye, but really he was just in between lunges of trying to lick Ron to death. And the third photo is of the cleaning supplies Dawn uses every other week to clean my condo for me.

I also have a home nursing option for when I get sick so I can stay in my home instead of going to the hospital, and I have neighbors that are always willing to lend a hand... whether it's to take Riley for a walk, pick up his meds or take out my garbage, I can email Candace or Laura and they've never once batted an eye at helping me. I was never one to accept help easily but I have learned that most people have purely generous hearts. And I am so grateful.

Picture9

And lastly, these photos show the difference between how I want things to seem versus how they are. I noticed that discrepancy as I was taking pictures last week... it was supposed to be of LIFE, not life as you'd like it to look. The photo of my bed made prettily makes it seem like any room, but in reality the head and feet are usually inclined and I am propped on pillows to sleep in an almost sitting position. The anti-gravity chair looks lovely, but usually it's situated with pillows to prop me up and so my bones aren't touching anything firm. Not as cute but much more comfortable.

                              ***** ***** ***** ***** *****

So, real life? I've gone out to eat once this year, and paid for it in pain after. I can count on my hands the number of times I've stepped foot outside my house since January, and most of those times were to go to the doctor or have blood work done. I don't drive anymore. I haven't been able to travel home to see my family because the two hour drive is too painful and sets me back. The last time I tried to go out with friends I got out of the car and my joints had frozen up and I couldn't move so they took me straight back home. Let me tell you, being stuck on a sidewalk doubled in pain on Main Street can humble a girl. I can't be around my friends if they have the sniffles because I'll wind up with pneumonia. Migraines are a regular occurrence. I haven't sat in a movie theater or gone to church in three years. I used to sing... it was my thing. I wasn't the greatest thing ever, but it was my way of connecting with people. I can't do that anymore. Most every gift I had, every talent I possessed, every freedom you can think of, I no longer have.

Bottom line, people, I am filled with joy. I'm exhausted, I'm in pain, I'm just getting by. But I am so incredibly blessed. I have a lovely home, an adorable pup, family and friends who care and people who love me, not despite my disease but because of who I am. I am blessed because I take nothing for granted. I love what I have instead of yearning for what I lack. I choose to be happy, and I am. It really is that simple, people. Start every day by being thankful and celebrate your life instead of devaluing it. I am so very grateful for each of you who lift me up and celebrate my life with me, and you should know I am celebrating each one of you every day.

IMG_2086

35 comments:

  1. I don't think you realize the depth of your talant....you have not lost it in any way from what I can tell. You are such an inspiration and since I have found your blog, you really have changed the way I look at things. I think about you everyday, and say a prayer that your burdens will be less than the day before.

    Reality is sometimes far better than the unforseen things our hearts wish for.
    ~coloradolady

    ReplyDelete
  2. How very humbled I feel after reading your blog. I will complain less about my own trivial disappointments. Bless you! I will say a prayer for you.

    ReplyDelete
  3. And my problems are nothing compared to what you are going through right now. Thank you Sara for making me realize I have to be more thankful for the things in my life. I tend to complain much more of how I don't like how things than to thank God for all the blessings he has given me. May God bless you and give you all the strength and patience you need each day.

    ReplyDelete
  4. I think that you are truly serving a mission - Giving hope where there was none. I am so grateful to have found your blog. Reading it has brought me back down to earth, where I am not the only one to suffer. Where I am not the only one who has been blessed. Thank You

    ReplyDelete
  5. Sweet Sara ~ Thank you for sharing this. You are making a difference in my life.I read what you have to say everyday and I smile or laugh or cry a little. I feel a connection to you. I'm a little different because of you. And I pray for you.
    Thank you for being you~ Robin Gay

    ReplyDelete
  6. Truly what I see is what CAN"T be taken from you through your disease... YOUR AMAZING SPIRIT! I so admire your courage and honesty and transparency. You may be confined to your condo, but I can see that you are living a LARGE life! God's blessings to you!

    ReplyDelete
  7. Sara, you have inspired me so much this morning. What a tremendous attitude and spirit you have... I'm proud to call you my blog-friend. Thank you for being so candid about the reality in your life, so often we avoid that here. Thank you for reminding me to be thankful.

    ReplyDelete
  8. Also humbled and loving the Maya Angelou quote at the end. You are amazing Sara.

    ReplyDelete
  9. I'm humbled by your attitude.

    I'm not at a point of acceptance yet, I'm still hoping for something different. People tell me I shouldn't give up and I don't really think I have, but I do want to come to a place of acceptance. I do want to rejoice in what I have, not complain about what I've lost. And I need to be doing the therapy I've been taught (as she hangs her head in shame).

    Thank you, Sara. I think I'll be coming back to this one lots. You have encouraged me.

    ReplyDelete
  10. Our lives couldn't be more different, but that just makes me seek out your writing even more. You may no longer posses the talents that you once did, but you certainly have many new gifts that you're tapping into: your talent as a writer and artist are undeniable; your gift of inspiration to others is awesome; your ability to live your life with joy in your heart is truly amazing.
    Despite being a stranger, your words speak to my heart and soul every day. Now that's a gift!

    ReplyDelete
  11. You know what? It's hard to read when your eyes are filled with years! But it's pleasant when they're happy tears. I am so overwhelmed by you and your "bulletproof positive attitude" (a la Kal Barteski) and I feel blessed beyond measure to have found that you exist in the world :)

    Like Denise I'm sitting here hollering at you that you most certainly have NOT lost all your talents, NOT AT ALL. You're just discovering talents you never knew you possessed!

    Though at a guess I'd say a lot of other people probably already knew about them ;)

    ReplyDelete
  12. So, um, do you do custom orders? Cuz I dearly love that last canvas! :D

    ReplyDelete
  13. Man, I love you guys.

    I pretty much don't know what else to say. :)

    sara (gitz)

    ReplyDelete
  14. You're amazing, Sara. Simply amazing.

    ReplyDelete
  15. Just beautiful, Sara.

    -Chantel

    ReplyDelete
  16. WOW!!
    I am speechless.
    You are an inspiration.
    Thank you.

    ReplyDelete
  17. i have never known anyone like you. i have never before had the honor of reading words like this. reading your amazing perspective on life despite your trials humbles me. but not in a "feel bad" way, rather in a way that challenges me. thank you for that. truly, thank you!

    i have the utmost respect for you friend!

    ReplyDelete
  18. Sara. You made me cry. And while Matthew would say I am more emotional since having Elias, I am not a crier. You have a beautiful spirit. I hope we get to meet someday.

    ReplyDelete
  19. Umm,yeah, those eleven pills at once were disturbing. Especially considering I can only swallow one pill at a time and I have to cut up anything much larger than and motrin:)

    ReplyDelete
  20. Anna: you're just lucky you inherited my brain and good looks... that's more important than pill swallowing anyway! :)

    ReplyDelete
  21. I have been lurking here at your blog for awhile and have not commented before...I just had to write and tell you what an inspiration you are to me. I could barely see straight from all the tears I cried! I am a nurse and my husband is disabled due to chronic back pain. (A Dr. once told him what he really needed was a spine transplant...don't think that is happening anytime soon!) I think you are a remarkable person with such a strength of spirit and character. I plan to print this post and provide it to any patient I may encounter who is at a low point and needs a boost. I will make sure they know where to find you. Bless you!

    ReplyDelete
  22. Look at you with the life conquering spirit...you go, girl!

    (I wish I could say that, inspired by you, I'm going to complain less about my own troubles now, but then you'd read my ranty blog posts and know I was lying. Ugh.)

    ReplyDelete
  23. Inspirational, and I want to hug Riley!

    Faye
    http://allflapdoodle.blogspot.com/

    ReplyDelete
  24. Stumbled on here today. Maybe now I'm thinking more like. Inspired! I too can be a complainer. I think I'll work on that a little harder now.
    Faye
    http://allflapdoodle.blogspot.com/

    ReplyDelete
  25. I'm posting again to tell you...you did it...you made me cry. This is not an easy task. Where do you live? I wish I could bake you something yummy and give you a massage. You are a strong woman Sara.

    Thank you for touching my heart today.

    Darlee

    ReplyDelete
  26. I was gonna mention how much I loved your red vase, or that I am in great health and would still fear killing myself on one of those balls, or say something about swallowing 11 pills at once, or that I am lusting over your tub...

    Then I read: "Most every gift I had, every talent I possessed, every freedom you can think of, I no longer have."

    Speechless.

    ReplyDelete
  27. Beloved Sara,
    The world is a much richer place...because you live here...

    ReplyDelete
  28. Sara, I found you thru Angie's site and just want to say how incredibly brave you are. I know you don't really have a choice ;) but your spirit is strong. Thank you for sharing your life, your struggles.

    I think you are amazing...{and your dog's cute too ;) }

    “Use what talents you possess: the woods would be very silent if no birds sang there except those that sang best.”
    Henry van Dyke

    ReplyDelete
  29. First time I read this I didn't comment, but I can comment now because we're twins right? ;-)

    Love this post! So much. Love it even more now that I know you a bit better.

    ReplyDelete
  30. woah.

    i feel speechless and like i just want to hug you. (does hugging hurt? i'd imagine it would...)

    just know i admire you so much. i really respect you and your strong faith.

    and my heart feels an overwhelming sense of love for you... overwhelming in the fact that we've known each other for "what? two seconds?" (you said something along those lines in my video. hee hee)

    on a completely different note -- eleven pills at once? i still struggle to take two at a time. i have to do this crazy swishing, throw my head back routine even. i need some lessons.

    ReplyDelete
  31. Wow. What a wonderfully optimistic look into your difficult life. Thank you for sharing. It's hard for some of us to understand where others come from, especially when those others have chronic diseases (like my mom, who has MS). This glimpse helps me understand a little more about you and others who have chronic diseases. Thank you!!

    ReplyDelete
  32. Thank you for sharing the details of your life.

    Recent blog post: orphans in distress

    ReplyDelete
  33. As always thanks for sharing. I am thinking of you and I am sending you a gentle hug and smile. Keep your faith. God loves you and He is right beside you.
    DF

    ReplyDelete
  34. Appreciate all the thoughts and kind words...

    ReplyDelete
  35. Your story makes my heart ache. What an inspiration you are. What a beauty. I live in chronic pain and have Asperger's. I can get out and move, be with my friends when they have the sniffles, and don't take medication. You have inspired me. Sometimes with Aspergers I want to curl up into a ball and never leave the house, but now I want to leave because I see this story from you and know I can be strong. I can't say enough how much you touched me. Bless you. ~

    ReplyDelete