Sunday, June 1, 2008

Just a Part of the Whole

When I stopped dreaming I could run, I knew for sure my life had changed permanently. The disease I have is called Ankylosing Spondylitis and it's different for every person that has it, which makes it difficult to predict where your journey will take you. The basic explanation is that it is an autoimmune disease that usually starts in your early twenties and begins by attacking your joints. It is progressive and systemic, but the progression and systems it can affect are as different as your genetic make up. For me, it began in my sacrum (low back) and my spine. The "goal" of the disease is to attack the joint and build scar tissue around it, causing pain and stiffness. Then the scar tissue eventually (for many) turns into bone and fuses your joints together. Until recently, most doctors believed that AS was a man's disease and was rarely seen in women. It is now known that it is prevalent in women as well, and they are learning the progression, symptoms and x-ray findings can be significantly different in women than men, which will hopefully be helpful in future diagnosis.

For me, over the course of the last 14 years, the disease and my life have changed dramatically. I won't go into a play-by-play for you, partially not to bore you to tears and partially because all of the years tend to run together after awhile. I will say that in the beginning it was pain like I had never felt before, which was compounded because no one knew what in the world was wrong with me. I had a lot of the knowing nods as if to say, "Oh, that silly little girl is overreacting." I actually had one doctor ask me if I had a boyfriend that was stressing me out. I wish I could tell you I had a witty comeback for him, like "The boyfriend is fine but I'm finding you very stressful." But when you are exhausted, sick and in pain all you can think to do is look at him bewildered and say, "No. I'm not sad, I'm in pain." And sadly, that doesn't always get you very far.

Once the diagnosis of AS was put on the table, everything about my body started making sense, and things that I didn't know went together turned out to be symptoms of the disease. The pain, the digestion problems, the night sweats, the bouts with iritis. Ahh, the good old days. Things have gotten more complicated since then with breathing issues, swelling of joints and more areas of my body being affected... and the exhaustion. I also have leukopenia, which basically means my white counts remain lower than normal, and actually decrease when I'm sick instead of increasing. This means I have to be ridiculously careful about being around someone with the sniffles for fear of getting pneumonia, which has become somewhat of an expected yearly ritual for me.

My life now, to put it bluntly, is painful. If I'm having a good day it means my pain is moderately high at best, and I've showered and gotten around my house without having to give myself a pep-talk first. I have someone who gets me groceries once a week and another person who cleans my condo every other week. A year ago I was able to drive myself periodically to Walgreen's for short little errands, but it's been a long time since that was an easy trip. I don't count out that I will be able to do that again, but it's not in my reality right now.

And living in the now is the easiest way to handle my life. It all changed when I realized that in my dreams at night, I was walking with a cane or crutches. And in my waking thoughts I can't imagine I ever ran track or jumped over a hurdle without it being painful. I don't remember what it felt like to not have pain, and while that was upsetting at first, I think it is actually easier this way. I don't long as much for something I can't imagine. I think if I dreamed I was running every night, waking up to the reality of having to figure out how to get out of bed would be crushing.

Other than the crutches and the wincing in pain thing, when I'm not on steroids I look pretty average and healthy. And I don't want to look otherwise. I will write about this as part of my life, but I'm not going to lament endlessly on this blog about my daily struggles and pains and complications. It's hard for people to understand that just because I'm not complaining, it doesn't mean I'm getting better. It's just that when you ask me how I am, I'm more likely to tell you how I am despite my disease, not because of it. I am more than that. I'm more than a sick person. I'm a person who is sick... and as I often tell my mother, my body is brutal but I'm ok.

My life is a difficult balancing act, but I am not being flippant when I tell you that I have a good life. I have a home, friends, love and support. I have that cute dog I've talked about at length and I have the time to really be there for people when they need me. This is not the life I imagined for myself, but it's the life I've been blessed with and I won't take a moment of it for granted. And if you're taking a moment to read this blog, I'm not taking that for granted either. Thanks.

107 comments:

  1. I came upon your blog from a comment you left on the site of Angie Smith (Bring The Rain).

    Wow. I can't imagine your life. I'll keep up with your blog. You can see who I am at www.hoffmanhomehappenings.blogspot.com

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  2. Sara - thanks for sending me your blog site. You truly are a special person and I'm glad our paths crossed 15 years ago (wow..we're getting old!). I'm looking forward to seeing you in July. Jen says hello too! :)

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  3. I found your blog through Angie's as well. Thank you for sharing your story, I will continue to follow!

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  4. Found your blog through a comment you left on PW's site. Love your writing and your attitude - I will be back frequently I am sure.

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  5. Hi Sara; I just read through your site and was just about to leave..when I noticed 'My Story'
    You know there are absolutely no accidents in life..just strange twists and turns. Reading PW this morning and followed your comment to your blog here! WoW can you believe it? My son also has AS! So much of what you say here and probably what you don't say we too have experienced with this strange As(s) disease. The symptoms started showing up for him in his teens in high school...I took him from Dr. to Dr. trying to find out what was wrong. Mostly, was told he is just trying to get out of school work helpful comments like that. I am also, a Registered Nurse; and was absolutely sure he was not malingering! It took until he was 23 before we actually, got a diagnosis. After many trips to the ER during 'Flare ups' where he was basically given Morphine and sent home...nice! I started talking to one of my patient's doctors and who was a very fine Orthopedic Doc. Told him what we had experienced so far and my belief that just because he didn't have a definitive diagnosis...didn't mean nothing was wrong. He agreed to see him and called his office to fit him in. (normally a 2 month wait to get an appt at his office w/referral). The rest is history..and one Hell of a Ride. My son just celebrated his 43 birthday, he is on SSDI which is quite limiting financially. He has good days and bad days. I am sure his good days would be like one of my bad days!
    Just know that sometimes this condition you have will take you on a heck of a journey in life. Many new friends and lots of old ones will never understand. But know that there are plenty who will support and be there for you.
    Glad you have Riley, who must make you smile every day!

    Take Care,
    Feel free to email me.
    Luv again, MoMo

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  6. My husband has AS, and for the longest time they kept saying it was something else and he was never taken seriously. His probably began when he was much younger, and has progressed very slowly over the past three decades (he is now 54), but each year it seems to get harder for him to be active and outgoing. They believe it started in the upper neck area, the xrays show significant damage to his spine there. You have our prayers and our hopes that one day, there will be something that can ease the pain completely and maybe even cure this disease.

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  7. "This is not the life I imagined for myself, but it's the life I've been blessed with and I won't take a moment of it for granted."

    I think you have come to understand Paul when he wrote in Philippians chapter 4... and that is very, very cool. While I cannot empathize with your condition, I can sympathize. God made my little girl different from other people (spina bifida) and I learned He did it as a blessing. I know there are times when it doesn't feel like a blessing, but those are the times He reminds us to continue to praise Him because He is the orchestrator of the events in our lives.

    God Bless You!

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  8. you have such a great attitude. thank you for that example!

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  9. Glad to have found your site!

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  10. Your story is incredible. I, too, have suffered with great back pain since I was a teenager, but mine started out due to Scoliosis, now 20+ years after having surgery to correct the scoliosis, I have degenerative disc disease - but like you, I live with it, but it doesn't control my life. It is only a part of who I am. Your story was inspirational. You have a true gift for writing and expression and will surely be an inspiration to many who suffer with illnesses on a daily basis. Thank you for your blog. It is wonderful. I am adding you to my favorites.

    Susan
    http://www.raisin-toast.com

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  11. Thanks for sharing your journey - you have great wisdom which clearly has been borne through trial and pain.

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  12. hey! :) We always comment right after or before each other on Pete & Brandi's page and then I came over here and was so touched at your faith, your sweet presence (it really is possible to have a sweet presence through internet words) :) and I'm so happy I have found you. Look forward to journeying with you through the blog

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  13. I found your blog from a comment you left on PW's site and I have to tell you that I stand in awe of your attitude and outlook. Your comments were so inspirational and are an example to me of your courage. I was diagnosed with AR about 7 years ago but didn't experience an actual flare until 4 years ago at 2 weeks after giving birth to my daughter. (My maternal grandmother had AR. My mother is also dealing with this disease as well). The pain I suffered and the loss of movement was incredible...a pain that I cannot begin to describe. I would not wish that pain on anyone. With medication I have been able to manage the pain and regain movement, but the degenerative affects are visible to me. To everyone around me, I looked fine and sometimes it seemed like they didn't believe what I was going through because they didn't see any obvious wounds. I do fear having another flare, but I can't live day to day in fear either. I take one day at a time and am grateful for the life I have. And although AR is not an easy disease, I know it doesn't hold a candle to what others deal with in their lives daily. So I too count my blessings and am grateful for the life I have and enjoy. I'll keep an eye out on your blog. Thank you for your example. :o)

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  14. Praise God that He never leaves us. I sit here speechless because I can't imagine what you go through daily. I will be keeping up with your blog and hoping the best.

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  15. I'm so glad I found your site (from PW comments). I wish I could say that I can't imagine your life, but I can. I have a different chronic pain problem, but have experienced the same frustrations with doctors. And Like you, my friends don't get it that just because I don't go around moaning and groaning, it doesn't mean my problem has gone away or gotten better. Thank you for sharing these common problems. I know that at least you understand! And I am making the best of all the blessings I have and I enjoy life (almost) every day. Blessings be upon you!

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  16. I just found your site from PW comments; thank you for sharing your story. You have new reader.

    I can relate to you saying this is not the life you had expected, but it is the life you were blessed with and you are just going to go with it. While my story is very different than yours, I can relate.

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  17. I found you through PW's blog and had to come and check you out as you always have such great things to say.

    Your strength is amazing with what you face on a daily basis. I am still in the diagnosis process myself but have some neuromuscular process going on. Luckily my bad days are at least not painful. (Though I do tend to whine on my blog ;) http://seeingdoublesob.wordpress.com)

    I'll be checking back in again.

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  18. living with an autoimmune disease myself, i found this post to be extremely refreshing. i love your perspective! and i just know your words here are a tremendous encouragement, and challenge, to anyone who reads them!

    amazing!

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  19. A friend sent me here to read your story. After reading I think it must have to do with our commonalities. I have not been diagnosed with AS -- I don't have a diagnosis -- but the life sounds much the same. And the fact that my avatar, most of the time, is of my face hidden with my puppy. :roll:

    Your attitude is great! I'm not as accepting of my illness yet, but am working on getting there. It's good to read your thoughts.

    Hang in there and God bless!

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  20. Hi, I just came to your blog from MckMamma's, (a comment you left) You stated that your trial is very different than hers but the same. I would third that and say my trial is different than both of yours and yet I relate totally to what you are saying. I hope you come and visit my blog too. Nice to "meet" you.

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  21. Wow, you're a wonderful writer.

    Striking and inspirational. Very well shared.

    Warmth,
    Laura-Jane
    Whimfield Farm
    www.whimfield.com

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  22. I'm glad I ran across your blog. Your positive attitude is an encouragement to me. I have multiple sclerosis. I live life one day at a time, not knowing what tomorrow will bring. I look healthy, so some folks can't imagine what living with MS is like. But God has blessed me in so many ways. My husband takes good care of me. Our children and grandchildren keep life exciting for me. I find that there are things to be thankful for and ways to serve God even through the pain and fatigue. May God bless you.

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  23. Wow. I am not really sure what to say, except your spirit is amazing. Reading your post today has put everything into perspective for me. What incredible strength you have!

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  24. I came here from a comment you left on Without Wax. I too cannot physically get to church any more & came to read your story. You have a wonderful attitude. I am going to read more and I know I will be a frequent visitor.

    -Sheryl

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  25. i'm reading your story.
    imagining your chronic pain.
    and blessed that you choose to be my friend in this little corner of our blogosphere...

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  26. WOW!!! What a story. I really don't have much to say other than I am praying for you with regards to this illness.

    It truly is a joy to see someone with this condition continue to praise God and write about things that matter in their life. Please continue to write! It truly is an inspiration.

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  27. Came from PW site, I too was healthy and strong until 3 years ago when I was diagnosed with Leukemia, My white blood cells multiply out of control, opposite of yours. I am inspired by you, and will keep reading. I'll pray for you.

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  28. This is my first visit to your blog. It was recommended by Colorado Lady. I truly understand now why so many people responded to it. You are a very exceptional person and have an outlook we all could use. May you continue to be richly blessed.

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  29. Hey.
    Spent some time on your blog... Found this one. wow.
    You have such an amazing heart - I am amazed that you intentionally report how you're doing DESPITE your pain and disease.
    This is inspiring. That you refuse to be defined by this. That you know you are more than this. That you live life outside of this and in spite of this.
    You go Gitz! :) Thank you for sharing this with us. It's a treasure.

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  30. oh. And I think I came over just to tell you that you're on my blogroll! :)

    Did I forget to mention that? duh

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  31. I believe that we are challenged only as much as we are able to carry. I see some people who have simple lives, without a care in the world - and I think that if faced with anything stronger, those people would crumble.
    You [as far as I have read] are a very strong person, and I admire that.
    (BTW, I found you by way of Mabel's House)

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  32. Hi

    I wandered over here from mandy's site because I spotted that you mentioned that you can't leave your home. I wondered why.

    I'm so glad I did. I also LOVE words and am going to enjoy your blog immensely, I can tell.

    I'm so excited by how God is using you! Keep on keeping on.

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  33. Hi, I found your blog through a link on Angie's site, Bring the Rain. My kids and I have a chronic disease called Mastocytosis. It is seems to be autoimmune in nature, except it is so rare that there is not much research on it. It causes bone lesions, and the destruction of joints and discs, severe GI issues, and mental changes as it affects the brain at times.

    You explained how I feel completely. It is so refreshing to read about another person who is struggling but chooses to find joy in the midst of thier new normal.

    I love your designs and your dog is soooo cute--my daughter would love her! (She is 6).

    Anyway, I will definitely be reading faithfully, I am so glad I found your blog!

    Take Care,
    Carla

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  34. Hi there, another person to find you through angie :)
    I am a physical therapist assistant, and had heard in my classes of AS, however, reading what you wrote, i clearly had no idea exactly what it did or the pain you were in. Thank you for sharing it with the world and giving me insight as well.
    I love your writing and look forward to reading more.
    Prayers and love in Him,
    Kate

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  35. Hi Sara,
    I just ran across your blog from Angie Smith's. I saw on her side bar your art work that say's "Choose Joy." I love it!!!! I got so excited when I saw it...and this is the reason...
    I had to share my blog with you...it's called "Choose Joy." www.joyelizabethjones.blogspot.com
    Long story short....I gave birth to my daughter Joy Elizabeth on 9/15/08. She was stillborn. Joy had a very rare condition called limb-body wall complex. I knew this early on in the pregnancy and they gave her no chance of survival outside my womb. We named her Joy. Choosing joy is a daily choice for me and of course it's not always easy. I have joy because I choose to see things from God's perspective, not my own.

    I'm looking forward to reading more of your blog. I just wanted to pop by real quick and thank you for your artwork. It brought a huge smile to my face.

    Sharleen

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  36. I am absolutely speechless.
    I truly cannot think of words to express my awe of your spirit

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  37. hey i clicked over here from inworship and was touched as i read your story. i can't imagine and yet you have an amazing attitude. i love your blog buttons. do you design them on the computer or do you do some other sort of art? i can't wait to use one on my blog because the "stepping stone" one really spoke to me. thanks for sharing.

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  38. I stumbled across your blog and was struck by how similar my daughter, OK so she is a dog, but still my daughter, Ainsley, looks like your little guy Riley!! After reading about him...they seem even more similar! She is so close to human it's scary! I'm so glad you have him because I know the joy and peacefulness Ainsley has brought to my life and how much she has helped me through my illness. God knows exactly what we need and I'm so blessed that she is what I needed! I think you probably feel the same about Riley!

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  39. Hi, I came across your blog through a comment you left on MckMama's last post. I was wondering what medication they have you on for your AS? I work at Amgen and my site manufactures Enbrel. My aunt has AS and they prescribed her our drug and she is doing so much better. Your attitude is amazing. I know how much pain AS causes and just making it through each day is a triumph. Keep up your amazing spirits. :o)

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  40. You are amazing and your strength reminds me of my daughter. She was diagnosed with Myasthenia Gravis stage 3 two years ago and she is 16. She isn't allowed to do anything physical. It is a neuro/autoimmune disease that is part of the MD family. We are still learning so much and when I find someone with your strength and spirit after so many years it gives me hope for my baby. She is sooo positive now but I know she gets down. You are amazing and keep being positive:)

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  41. Wow Gitz. Your grace in all this is amazing and inspiring. Thank you for sharing, and in doing so encouraging others (ie: me) to push on and be extremely thankful for all the blessing God has poured out.

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  42. I just found your site from PW and I will follow your site. My daughter has ms and she is a lot like you with her strength and attitude.

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  43. Thank you for sharing your story...and for the reminder about choosing joy! In any and all circumstances!
    My heart really goes out to you. My sister has MS so, I see what it is to live with your own body turning against you!
    God bless you!!

    Recent blog post: My "baby"?!!! Could it be time for "the test" already?!!

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  44. Hey! I stumbled across your blog through searching for this Jim elliot quote. And I read your blog in parts and now all of your story. And I must tell you and dearly want you to know that you excatly are where you wanna be with God. At least about being sick. I've been born handicapped and all my life people pittied me and when I became a Christian in my teens people thought they needed to tell me the same things they told you. And I replied: I wouldn't have been the same person without my scars and stories. And if choosing- I would keep the scars. They make me put everything into perspective and enable me to pursue what ppl often call" living life to the full". But of course the shadow sides were not long to be waited on and rigth now I can say that I wish I wouldn't have an artificial abdominal wall and a cricket back. I deal with it quite normally, so people are often surprised. Some feel the need to tell me I am too skinny ( which comes along with my illness) and some think I don't know my back ain't straight and feel the need to tell me. Some friends, more plp from church, they feel the need to tell me to ask for healing. I'd rather ask for healing of a sick, sad heart.
    I believe God gave me this as a purpose and who knew where I'd be without it. I doubt thinking as deep and living as radical would be the case. Also, I doubt being aware of us all just living in the shell called body. And who knows how I would have dealt with guys. They don't even mind now, but I do. I don't wanna share something that is more personal than boobs or me naked in a way. So that kept me from doing wrong most of the time. I want to have a healthy live, for the soul, above all. For the soul is eternal.
    And in the way you write I get greatly inspired. I know we gain in suffering. Let us not be fooled by kind meant yet selfish suggestions of how God can heal death. he already did. And we can endure everything in him. In pain - in being different. Dealing with it graciously YET! Being able to adress it truthfully and not escape from reality. Nothing annoys me more than doctors or family members telling me I am a wimp or trying to chrack me up. Right after an operation, that might not be too good a thing. I am joyful, thank you very much. But unlike you I can look at the reality of life. And see the joy in all grittyness and pain. And that! is living a blessed life.
    May they one day see this, too .
    Death has lost it's sting a long time ago, let's pick up our crosses at deal with it gracisouly.
    In his abiding love, an unknown sister in Christ, may this encourage and not dragg anyone down :)

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  45. I just came across your site.I understand your pain (a little) I have severe RA and lupus.
    gentle huggs from across the ocean

    Recent blog:=- New Bike

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  46. Love your blog!

    Recent blog:=- Fireproof Movie Review

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  47. Love your blog!

    Recent blog:=- Fireproof Movie Review

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  48. You are a true inspiration! Positive energy is a must in this world!

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  49. You are a gifted writer with much wisdom to share.

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  50. I just came from (in)courage to your site. You are a very brave woman. My husband and I each have multiple chronic pain diagnoses, degenerative but not to the degree yours is. Our son has autism, another invisible disability. We understand that part of your story. Our pain, I'm sure, is not as severe as yours, though it has made it impossible for us to work. Do you have a power wheelchair for your worst times? That is how I get out of the house, that and the w/c ramped van. If you want to read a heart-warming story of human kindness, let me know, I have an awesome story. You are an inspiration. craftythriftydecoratingwifemom.wordpress.com

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  51. I'm so glad you say here that your life is more than your sickness. I also have an auto immune disease that I rarely mention in my blog . . . because my life is so much more than that. I joined a support group for my disease, and found it to be really depressing. The other members seemed focused on the negative, and hopeless. I found I had a much greater support system in the friends who struggle with completely different things, like finances, rebellious kids, etc. Although their struggles were so much different than my own, they are like me, focused on the positive, with the hope of Christ continually before them.

    ReplyDelete
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