YOLO. Warning: Super personal info. And swearing.

Life is hard. 
Life was difficult when my second mom (my grandma) died. Life was difficult when I left my church family and I was told by my family that I was going to hell. Life was difficult when I got divorced and my little kids were held away from me against my will for weeks. Life was difficult when I had to file bankruptcy as a result of my divorce and pay thousands of dollars in lawyer fees for years afterwards. 

Life is literally unbearable when you stare the death of your beloved younger sister in the face. My sister was diagnosed with an incurable autoimmune disease called scleroderma. You probably haven’t even heard of it. It’s rare. So not many people have. Here’s the technical definition:

Scleroderma (skleer-oh-DUR-muh) is a group of rare diseases that involve the hardening and tightening of the skin and connective tissues — the fibers that provide the framework and support for your body.

In some people, scleroderma affects only the skin. But in many people, scleroderma also harms structures beyond the skin — such as blood vessels, internal organs and the digestive tract. Signs and symptoms vary, depending on which structures are affected.

But what does it mean? It means my sister is in physical pain. She is figuring out what to do with her bank account and assets and her CHILDREN in her early 30s. Not fuckin fair!! Sorry (not sorry) but I’m mad!!!

I thought I was going to have at least 30 more years with her. But now I don’t even know. No fair!!! And I’m really REALLY fucking PISSED OFF!!! My heart hurts. This is unlike any pain that I’ve felt in my life. 

Why can’t the doctors do a better job of taking care of her? Why can’t the smart people of the world figure out a cure for this? Why does it have to be HER? How much money do WE need to make her better? Is it about money? Because there’s no funding for this disease?? I’m heartbroken. I told her ‘if we have to fly to Germany for a cure then we do that.’ There is not a material ‘thing’ in this world that I would not give up. Not one. 

Thanks for listening. And the morale of the story is YOLO. because really….You do not know how much time you have on earth. Can you please send my sister prayers and good vibes and a f’n miracle? I can’t imagine our world without this love of my life. My sister. She’s me. I’m her.  

If there is ANYONE who knows about this and how to help please contact me right away. Staceytgreenside@gmail.com

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31 Replies to “YOLO. Warning: Super personal info. And swearing.”

    1. Thank you! It’s so rare. I was doubting anyone could help or even relate. But I appreciate the thoughts so much. We can use all the prayers and good vibes in the world. I will definitely take that. 😘

      1. I am so sorry about your sister and will be praying for her and your family.
        I have heard of scleroderma. I have been diagnosed with a few autoimmune diseases. I am always looking for something that will work.
        I do not know if they can help your sister, but it would be worth checking into…a clinic called Infusio. They are in Frankfort Germany, and also now have a clinic in Beverly Hills, CA. I have read losts of good reports from patients that have been treated there.
        Another source for information and Finicial help for treatments is a site called needymeds.org they have lots of information and also and access to sites that offer assistance for treatment costs, medication company assist and help for living expenses. I hope this if helpful. Praying💕
        Infusio

  1. Oh Stacey it is not fair!! Unfortunately I do know about Scleroderma (worked 10 yrs with a rheumatologist) and know there is no cure and that sucks. Seeing people with any autoimmune disease is hard and I wished I could cure them all!!!! Hang in there and cherish everyday with her.

    1. Thank you Tammy. It is sooooo hard!!! 😘
      I am hoping that we can go to the mayo and get some really good care for her. Something to maybe delay the progression?? I don’t know. Hoping for a miracle.

    2. We are dealing with autoimmune disease in our family also, and it sucks. It seems no cure or help. There seems to be so much of that now. My thoughts and prayers for the all of you.

  2. Stacy,

    Ann, her boys, your mom and the rest of your family are continually in my thoughts and prayers. It is so unfair. The anger, pain and worry must be so unbearable at times. I know that your amazingly strong sisterly and family bond carries you through and that there is joy in life and the little moments. I will keep all of you in my thoughts, prayers and good vibes. Hoping for more good days than bad, more happiness than tears and more joy than sorrow.

    1. Thank you Kim. It truly is. Funny thing is last night she was comforting me. Telling me everything is going to be ok. I should be comforting her!! Some days are harder than others. For everyone. Sucks.

      Just wish this could be fixed. Somehow. Thanks for sending prayers.

  3. I’m so sorry Ann is going thru this, Thoughts and prayers for all. If I can help in any way just let me know. Good vibes. Sending HUGS.

  4. I’m so sorry, Stacey. I don’t know much about it, but I found a link to a Minneapolis chapter that specializes in Scleroderma. Maybe they can point you in the right direction. Much love to you and your sis!

  5. Life is not fair! I think about Ann on an almost daily basis and I hope and pray the miracle happens for her…she is one of the nicest people I’ve met and she does not deserve this. Hugs to you and your family

  6. So sorry Stacy. My prayers for a cure, and strength to get through this, are with you and your family

  7. Hello Stacy you probably don’t know me but I new your mom and Ann I sent your link to a doctor’s web site that is used to do just what you asked for they I mean the doctor’s use it like Facebook for things like this and you are right Ann is one of the nicest people with the brightest smiles I know and we have been praying oor her for a long while ow in our bible study
    with Gods speed Timmy

    1. Hi Tim. Thank you for that. Looking for some help and more answers. The doctors in Duluth are not giving good care. We just can’t sit back and let that happen anymore. So I appreciate it. And thanks for praying for my sister.

  8. Hi Stacey. Unfortunately I know all about scleroderma. I have it. You are right!!!! It sucks, its unfair, it physically hurts all the time and people don’t get it. It hurts just to do daily things like make food, empty a dishwasher, dry yourself off with a towel, socialize. I try so hard to keep life as normal as possible, but its so difficult. I also smile and lie a lot. What I mean is, even though I am having a hard time I tell everyone I’m ok. I’m not and that is mentally frustrating. I was an RN. Now I’m a patient. That’s hard! I use to care for people, now Its hard to care for myself. I could go on and on, but I don’t have to because your sister is unfortunately living it and you are with her, so you see it. I’m glad she has you! I live in Pa and travel to Maryland to Johns Hopkins. I hope your sister finds some peace and relief. I believe I have spoken to her online. Keeping you in my thoughts.

    1. Oh my. Hi Dianna. Thanks for taking the time to write.

      I’m wondering about your care at John Hopkins. I was trying to convince my sister to go there with me.

      Glad you talked to her already that’s great.

  9. Stacey, I wish I had the answer or even the right words to say. Your entire family and anyone touched by scleroderma are in my thoughts and prayers. I’m mad too. This stinks!

    I hope someone sees your post and can shed new light on treatment considerations.

    Xo Linda

  10. Sorry to hear of this. Ann is a Beautiful woman and Mom. Diane so are you!! I hope and pray you guys can find something to help Ann. I will be praying for all of you. God Bless you and keep praying even when you don’t want to. Believe……❤

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