Long time coming…

These are the stairs from the condo that my family and I stayed last week for a vacation at the beach. "To be able to use those stairs without assistance was seriously indescribable." 1 min


27
2 comments, 27 points
These are the stairs from the condo that my family and I stayed at last week for vacation at the beach.

These are the stairs from the condo that my family and I stayed in last week for a vacation at the beach. Just a couple of months ago they would have been nearly impossible. But I can officially and so so happily say that this new infusion is WORKING! 🙌🙌Praise Jesus!

Back in December, a few weeks before I was due for my next round of Rituxan being used to treat dermatomyositis (DM), we got a rather large bill when we were under the impression we were only paying a copay.

My husband is the only one who works so you can imagine how difficult it is when we get a surprise medical bill. I fought for months to get some kind of help, and in the end, I got denied for the Rituxan. However, I did get approved for a hardship through my insurance for Privigen (IVIG)! All the while my husband has been working major overtime to save the money in case Rituxan was approved.

Myositis patients, donate plasma

I figured “let’s try this IVIG in case it works. It’s free and it just may work.” Plus I knew my niece’s graduation was coming up and I could get through two infusions before going. I have done IVIG before but it didn’t help whatsoever, just gave me headaches so I didn’t go into it with any expectations. I saw a little bit of a difference early on but it wasn’t until our vacation that I truly saw just how much it had worked. I never would have had the energy to get through everything without it, go into the ocean, go up and down those steps or do half the things I had done.

I will never be 100% again, but I feel better aside from a flare up today, and on and off pains. This is nothing compared to what it was. Being told by my doctor that I’m out of options and then finally finding something that works is an absolute blessing. There was a time when I couldn’t even get up from a seated position and I needed help to even use the bathroom. So to be able to use those stairs without assistance was seriously indescribable. 10+ years of different medications, muscle loss and pain. All I can say is, Praise Jesus!

Register to attend online, Caring for Caregivers

Like it? Share with your friends!

27
2 comments, 27 points

What's Your Reaction?

I Care I Care
1
I Care
Like Like
22
Like
Empowering Empowering
22
Empowering
Funny Funny
1
Funny
Cynthia Howard

A Texas girl living in Georgia. I moved here in 07 I believe it was. Started school and met my now husband not long after moving here. It was actually when we were planning our wedding that I had my first noticeable symptom. I woke up with extreme shoulder pain but still went to work. By the next day I couldnt move anything with yelling out in agony because of my shoulder. I didnt have insurance at the time but he took me anyways. They said "I overextended it". Eithin 2 wks I was completely crippled though. It spread from limb to limb and was not just pain but weakness as well. I couldn't get up from a seated position, roll over in bed or dress myself for 5/6 months. For the last 10 + yrs I have tried sooo many different things. Only thing that has really worked is rituxan (but it's too pricey), prednisone when I really need it and currently I'm on privigen because I was approved for a hardship through my insurance thankfully and it so far is working the best! I use to be a very sociable person but now I prefer the quiet life with my husband, fur babies, a good book, great music, my small group of loved ones, and my happy little bubble aka my house lol. Thanks for reading and I hope you have a blessed day!!

Comments

comments

2 Comments

  1. The picture of stairs is so funny and empowering when you’ve experienced Myositis! Every time I make it up a flight of stairs, it’s a miracle and I remember the time when I wasn’t strong enough to even lift my foot high enough to step up onto the step! I’m so happy for you that your treatment is working.

    1. Thank you so much. Unfortunately, I had a set back but it will not stop me from pushing forward. I’m currently doing another week of infusions and I feel it’s already helping some which any little bit helps with how I have been feeling. I was forced to stop methotrexate after 10+ yrs because it was affecting my liver and could affect my ILD and this was when I was getting over being pretty sick so I have been in a rough flare. Hopefully, between switching to cellcept and this weeks of infusions I will feel even better 🤞. Because those stairs would not be possible right now.

Choose A Format
Story
Formatted Text with Embeds and Visuals
Video
Youtube, Vimeo or Vine Embeds
Meme
Upload your own images to make custom memes
Image
Photo or GIF

Send this to a friend