Baby steps

So let’s explain a little bit more about what has been happening over the last four days and beyond. So we are all on the same page, I have a severe joint infection of my left hip. This was most likely part because of the high dose steroid use and my HLH. The combination of these tow things, literally melted my joint away leaving it essentially non functioning. I do not have a picture of my hips, but this is kind of what it looks like:

The picture with the arrow shows that there should be a space in the joint. That is what allows the joint to move. If you look at the picture without the arrow- that is more of what I had. No space, no movement, lots of pain. Look at the picture without the arrow- What the surgeon did was cut that bone completely so that the flat part lies up against the pelvic socket. This has helped tremendously with the pain, but obviously severely limits my mobility. And my left leg is about 2′ shorter now than my right. I thought my leg felt weird before, it REALLY feels weird now. Kind of like a spring board on the inside. I am getting up about 3-4 times a day and slowly learning to balance with a walker and will eventually learn to use a walking shoe. Until the HLH and stem cell transplant are complete and I have a descent immune system- I will walk with a cane and other devices, because I cannot risk a hip replacement. Wow.

There you have it. Trust me, I have had been trying to wrap my head around, “how do I walk?” Because you know what, it has been done before under these circumstances and worse. Diseased bone removed- walking can continue. I found this video- and it has reminded every morning- that I can do this.

I like the second video “Jen learns to walk” because it takes you through more of the process. This young lady- had half her pelvis removed due to Cancer! Guess what? She walks. I will too- but maybe not tomorrow. It will be a process and it will take me several weeks to a month- that I am more than sure of. But I need to believe, trust and listen to God and my body.

We are not completely sure where this puts us on the time schedule for transplant. But each moment, each step- is a baby step to beating this disease, being with my family and being grateful that I have the opportunities to be treated and healed. That hip and joint- took me a lot of places, on a lot of runs and hikes, carried my children, me down the aisle, drove my first car, rode a horse, of course I could go on. Now it took a lot of infection from my body and I am so thankful for that.  Praying that I continue to improve and stay healthy (and maybe have a “normal day or two.)”

Thank you for all the prayers that are coming my way. I deeply appreciate it. Follow me on Glittered Path and Gofundme!

2 Replies to “Baby steps”

  1. Dear Sweet Demara, I literally stumbled across this. Didn’t even know such a blogging place exsisted! I had no idea of this rough journey you and your family have been navigating. I’m so sorry, but at the same time so proud of your spirit and positive determination!
    I haven’t read all of your posts, but I did see your Commitment post. How I wish I had known your thoughts! But…we’re not supposed to talk about things like that at work. Work be damned! I’m so glad you found a church that could complete your connection to God!
    I’m praying for you all! I’ve clicked on the box to be connected to your blog so I hope I don’t lose you! I live in Florida now and my babies are almost grown. Mark, who was in NICU at Vandy is 12 and loves the ladies! I swear being on a vent all that time increased his talking ability four-fold! Know that you are being thought of and loved!

    Liked by 1 person

    1. Miss u Kim!! I think time and maturity has helped me realize, no one should be muted for their spunkiness and beliefs. My journey has been far from easy, but I can reflect on those that have inspired me with their charisma and candidness. You I count amongst those! Keep in touch- and I am glad you are doing well!

      Liked by 1 person

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