Wednesday, April 25, 2012

I'm stuck.
I guess I've been stuck for awhile. All I'm doing is waiting, when I want to be doing SO much more. At first i was okay, I was strong, and had the wisdom to know that it's all okay. But lately I've burnt out, that's one way you could put it. Waiting is so hard. And, what I'd never realized before, it's exhausting. What really sucks though is when you're waiting for answers, and you know those answers might not be what you want to hear, what you've been hoping for. We all hope for the best, the better outcome, but it's not always what we get. I'm at a point however, where I'm pretty much hoping for bad news because it would be an answer. and it will end this awful state of waiting. I find myself unable to picture the future because I have no idea what is going on in there (my body). Dealing with the loss of control in my life is beyond difficult. We all feel safer, happier, and much more relaxed when we know and are able to decide what we will do today, or tomorrow, or the next year even. But it seems my life right now and everything in it is being chosen for me. When this first began, I fought it. I played sports, I did all I could to live the life I did before. Now, I've kind of accepted things. I'm learning to accept the fact that certain things I had before have been taken from me. I no longer struggle to keep them in my life. I do not see this as giving up however. Yes, there have been times when I have given up, those nights where all I want, with all my heart, is for it all to go away. I long for everything the way it was. But no, each time I have gotten back up, somehow, and am still fighting; but in a different way. I'm not fighting the inevitable, I'm fighting to still be me. To have control over my attitude, to make the best of what I am blessed with. I fight to try to give those I love peace to know that I'm not suffering, I'm fighting, just in a silenced way.


  1. Anna, I came across your Blog from a FB post. In reading your posts I felt like someone had put in print all of my thoughts I find so hard to explain. I also have Systemic Scleroderma & have all of the same symptoms as you. I am older, a Mother of three adults daughters, and a Grandmother of four. My heart goes out to you having this disease at such a young age, but admire your insight & courage that shows from your post! You are an inspiration to me. I have my first appointment at Henry Ford Scleroderma Clinic next week & still holding out some hope for answers. I would love to correspond with you and find out what tests you might have had & treatments that might have helped you. I have not had any luck with the doctors I have seen the last 3 years up until just this past January. (If you would feel comfortable that is)
    You are in my prayers & will be from this day forward.

  2. Hello, Anna:
    Your posts are the words of a strong young woman figuring out the possibilities and limitations of life and placing them in a small universe of words in amazing and new ways. The universe of this latest post is larger by far than is given most of us to see or know in our lifetimes. You have explored where most of fear to tread. Coming away from your words, I feel an access to courage that can sustain me and my faith. You are sharing riches.

  3. anna, i came across your blog from a fb post.i suffer from scleroderma as well since the age of 16-i am almost 33 right now..i do not know why this happened to us- i am totally unable to find an answer.All i know is that the only choice we both have is to fight.I can feel and understand you completely.You are a very special person,a sensitive and mature young woman.I will be thinking of you and i will send you positive energy.I totally respect your everyday struggle!and i am sure you will never,ever give up!some people are not made to give up!
    lots of love from Greece- i would be honoured to correspond with you.

  4. Hi Anna
    I also came across your blog through your brothers FB post- I to suffer from Scleroderma- I was diagnosed 3 years ago (I am 53) I understand how you feel & don't know why we were dealt this hand. I too had to abandon the things I loved to do. My husband pursued moving us to a warmer climate because of the Raynuads & Joint problems. ( I lived in Alaska for 14 yrs, & moved to Florida a year ago- but left my twin daughters & 2 grandchildren there) The move has been good my rhuematologist & internist are great & have adjusted my meds, I I watch what I eat & drink to avoid the stomach issues. I now can walk the beach in the mornings & have been doing yoga ( this truly has helped me a lot mentally & physically) From reading your blog I can see you are a very strong young woman & devoted to God. I think you would make a good spokesperson to get more people & Congress aware of our disease to aid in getting more research to find out how to cure this disease or at least find the meds to make our lives more comfortable. I wish you the best, & you are in my prayers.

  5. Anna, your words here and when I visited your English class are wise beyond your years. I hope you know how much the Sophomore Girls (and so many others) and I support you and are inspired by you. -A. Pollock

  6. Sweet sweet Anna...look how your sharing is touching people around the world!

    I understand completely - Waiting really is the hardest part. We know, however, as a Christian, waiting is precious because we wait on the Lord, and waiting on Him causes us to seek His presence and trust Him beautifully because of the trial. Don't be too hard on yourself when the waiting gets difficult...or if one day you don't fight as well as you did the day before. Having a chronic illness does that to you - because it is never gone and always requires some kind of attention.

    You are doing great! You are fighting good things for yourself and those you love. Your silent suffering to spare and protect others is so selfless - a true testimony of your life given to Christ. One day at a time, dear love. And when today is intolerable...know that God's future grace is in every tomorrow, and thank Him for that.

    When a heart is humbly aimed aright,
    Knowing the audience of One attends,
    Closed eyes cannot veil the Heavenly Light,
    And the heart calms with peace the Lord sends!

    Love you!

  7. you inspire me. thank you.

  8. Hey Anna, I'm Casey. We've met once or twice before, but I'm JW's friend. I wanted to let you know how inspiring your blog is - I hope you keep it going for a long time. Sharing your story (no matter what it is) is enough to change the world and touch people's lives, and a blog is a fantastic vehicle for doing so. From the few entries you've posted so far, I'm in disbelief of your impossible strength... even I had trouble keeping up with Cranbrook, and judging by the fact that I've worked out like two times this year, I definitely wouldn't have had the motivation to go to hockey camp in the summer time. But then again, I'm not a fighter like you are.

    You are smart, beautiful, and super duper strong, Anna! Keep doing what the rest of us are nowhere near capable of. There's not a doubt in my mind that the world is gonna kneel before you someday. I, along with all the rest of the CK community, will always be there for you and your family. Add me to your list of people to call if you're ever in need!

    Have a great day!

  9. Hi Anna, I just saw your brothers video post and story on Huffington Post. I too suffer from a Chronic Illness, but I suffer from CRPS (Complex Regional Pain Syndrome, also known as Reflexive Sympathetic Dystrophy (RSD). While the Illness I suffer from does not kill us, it does Cripple us. Essentially a lot of the things that your are going through with Joint Paint, Muscle wasting, and everything else that goes along with it...especially all the Mental health Issues and Battles.

    I truly do understand when you say you feel like giving up, but there is one thing that has always amazed me, and that is those of us that have been stricken by diseases such as yours and mine, is that we are all fighters. When we are having an "Off" day, we always seem to be able to reach deep inside of ourselves and find something that keeps us fighting. I don't know if it's God's plan for us to suffer in this life so that in the Afterlife we will be rewarded for everything we have been through, or if it is just how our genetic make-up made us, and we drew the short straw so to speak.

    The reason I was writing this is because I saw what your brother wrote on the Chalk board for the "Bucket List" and would like to converse with him to see how I could help. Please have him email me at with the header of his name so I know not to delete it.

  10. Dear Anna,
    May God Bless You. I see so much wisdom and faith in your words, that many adults don't even have. You seem to have complete confidence and faith in God's plan even though you are going through so much. That is what it means to trust in the Lord with all your heart. Sometimes it's hard not to lean on your own understanding, but you know that He's in control no matter what challenges you face. That is really encouraging to me, because it shows me that it really is possible to trust God with everything. That faith you have is going to help you get through this, so never let go of it. Remember that God won't lead you to anything that He won't carry you through.
    There's a poem that I like to read, and I thought maybe you would too. So here's a link to a website that has it.
    Psalm 62:5-8
    "Yes, my soul, find rest in God; my hope comes from him. Truly he is my rock and my salvation; he is my fortress, I will not be shaken.
    My salvation and my honor depend on God; he is my mighty rock, my refuge. Trust in him at all times, you people; pour out your hearts to him, for God is our refuge."
    Anna I am praying for you as you continue on this hard path that God has placed you on. It would be very easy to give up, but God wants you to press on, like Paul said.
    God Bless You.
    - Kimber

  11. Hello Dear Anna,

    Your truth is that even though you're in the midst of a firey trial you still have a Great Passion for Life and that seems to be glistening from the Spirit of Life who is God deep within you. I can identify with you in so many ways yet I do believe that you are equipped with what you need to beat what is going on with you. Remain steadfast and true to your Purpose because it is when we are given a Great Assignment for the Purpose of God doing a mighty work we begin to understand how Powerful it is from the level of it's opposition, which in this case it is physical. Also remember dear heart that inspite of what the medical report said ..... You Are Diagnosed With Destiny. Selah. God Bless You as you continue your Great Journey in Impacting generations for Him. **AMEN**
    In Christ's Grip,
    Evette ..... The Bahamas

  12. In LIFE people complain about, traffic,bills,gas, etc.. In other words people tend to complain more than they like to thank. In our world people our always trying to get as much as they can. Instead of being happy for what they already have. Let me stop rambling.. In your case you had your whole life and goals ahead of you, and then one day all that changed, now your have to go where life takes you, You can't plan day by day, year by year..because like you said in the video everyday is different for you.. but instead of being in a state of anger or depression. Your in a state of Motivation and Encouragement..Letting people know that they should appreciate life and what we have and what we can do. Because life is something that needs to be cherished and appreciated.. Life only has a FORWARD button not a pause or reverse..That's why we should be thankful. I am beyond motivation by your strength, courage and Heart to keep going and enjoying life still.

    Your brother has a great plan, to take you where ever want to go... That's amazing and I vote for him one hundred percent..
    I am all about making a change.. And you guys are not only making a difference but opening peoples eyes.. I do what ever i can to help... is how i am trying to make and difference...

  13. My wife has scleroderma. She is the Michigan Chapter president.
    There is a local chapter that can give assistance and information.
    Below is some information; web site, phone and contact.

    Laura Dyas, Executive Director
    Phone: 248-595-8526;

    Scleroderma Foundation Michigan Chapter
    23999 Telegraph Rd.
    Southfield, MI 48033

    U of M has a very good scleroderma program.
    Please call Laura and she can you information you may need.

    Please let it be known you are not alone.
    Many suffer from the same disease.
    Join us at the zoo on June 24th for our annual walk.


  14. Anna,

    I saw the new story on channel 4 last evening and was so sorry to learn that you are facing a battle with scleroderma. As the Executive Director of the Scleroderma Foundation Michigan Chapter I receive calls from families with children as young as nine years that are also living with the disease. I know that right now you are feeling so many emotions and feelings but I want to assure you that first of all, you are not alone, and secondly, there is so much the MI Chapter can do for you.

    I know from what the news story said, you are getting treatment in New York. I also wanted to let you know should you desire to see anyone at the Scleroderma Clinic at the University of Michigan I can assist you and your family in the process. Dr. Dinesh Khanna is an amazing doctor that came from UCLA. He is currently doing nine clinical trials and is very experienced in the field of scleroderma. He is very compassionate and empathic. He sees patients as young as 15 years. If this is an option that appeals to you I would love to help you arrange an appointment.

    I am also willing to come and meet with you and your family if you would like or you are able to come to our Southfield office. We are here to meet whatever needs you may have.

    If you would like to talk to another scleroderma patient who is your age I can arrange that. Sometimes it helps to talk to someone who is going through what you are.

    On June 24th we are hosting the Family Adventure Day at the Detroit Zoo. This is a 5K run and a walk. We are also having Mark Teich from Disney, a Detroit Red Wing, the MSU mascot, Tookles the clown will be face painting, crafts from children, Roary the Detroit Lions mascot, the Rainforest Cafe mascot, food and a tin can raffle. There is something fun for all ages. You get to then stay at the zoo all day if you like. All the funds and pledges people raise go directly to raise more awareness and for research. I hope you, your family and your classmates will join us for this wonderful day.

    I can be reached via my e-mail or at the office 248 595-8526. I am here to help you and your family so please let me know how I can do that for you. If you would like me to come and make a presentation to your school I would be happy to do that also if you thought it would help your classmates better understand what scleroderma was.

    I look forward to hearing from you and most of all to meeting you. Please know you are in my thoughts and in my prayers. I can tell by your beautiful smile and your determined spirit that you are strong willed. A positive attitude is important and will help you as you move forward.

    Look at our website for more information about the walk and about scleroderma.

    Laura Dyas
    Executive Director
    Scleroderma Foundation Michigan Chapter