The Wallworks

Friday, September 28, 2012

Painful


 My first clue that something was wrong was a debilitating pain up my whole arm.  I had to sleep on the couch a few days because the moaning just kept Glenn up.

Many doctor visits later I was diagnosed with Rheumatoid Arthritis.  It was a relief to finally have answers and make a game plan for how I would handle it.  At first I took pills.  But the arthritis progressed and a minute into a run I would walk home in tears.  The tears not so much for the pain, but because I couldn't believe I couldn't make my body do what I wanted.

Remicade was a dream come true.  An infusion that for many years made me whole.  I was so pain free in fact that I decided to go off all my medication.  My doctor agreed I was in remission and I left that day and never looked back

As much as a 'dream' as remicade was, it is also a fairly recent drug which means who knows what prolonged usage does.

After a little more than a year of being pain free the pain has slowly crept back.  Mainly in my hands and feet.  It didn't stop me, just made life a little more painful.  Every step taken in a 6 mile run is felt.  Every bottle I open is a struggle.  But it's livable, I wasn't hurrying back to my doctor.

But last night changed everything.  The pain in my left shoulder started about 3pm.  I popped a vicodin and was able to attend a church function that night I had committed to.  As soon as I got home the pain intensified.  I popped another pill only to have it do nothing.  I was crying and moaning and thrashing about so I took my broken self down to the guest room as I didn't want to keep Glenn up all night.

Truth be told it was just a nice gesture.  I really thought I'd settle down and fall asleep. 

No such luck.

Glenn left me another pill, a stronger one that I didn't think I would need but very soon was gulping down like a madwoman.  It didn't help.  It only made me nauseous and want to vomit. 

The pain progressed to the point of childbirth pain, my shoulder was on fire.  I didn't think arthritis had it in her, but apparently this is not a one trick disease.  I tossed & turned all night mumbling, asking God to make it stop, shaking, playing soft music and moving into a million different positions.  I was desperate for some sort of relief.

Eventually the paid did subside in 10 minutes increments and then I would gear up as I felt the pain come back stronger and harder for another 30 minutes to an hour.  I am guessing I slept about an hour last night.  How am I even functioning?

I am better today.  I still can't put my hair up, my ponytail in the picture is compliments of Lila.  It's still hard to dress.  I can only move my left arm from the elbow down.  I have new insurance now and haven't been approved for remicade yet.  I pray I will. 



43 comments:

  1. My love, I am so sorry. I love you and I want to be there to help you. I wish I could be. Marie you are in my prayers, as you are often.

    I can't believe it. It sounds just like child birth, the contractions coming and going the anticipation. What can I do to help. Marie, I could come for a weekend with baby. He's easy. If you need anything, even if it seems too big, or too small, you will let me know...I know you will. I love you and I feel for you.

    Thinking of you,

    Shauna

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    1. Yes just leave your 7 kids and come be with me :) Just knowing you're thinking of me is enough.

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  2. Oh Marie, I am so so sorry! I didn't have any idea how bad it got. My heart goes out to you. Sending so much love and support your way. Wish I could help you, you are such a beautiful soul and don't deserve to be in any pain.

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    1. Honestly neither did I, I was taken completely by surprise. Thanks for your words, greatly appreciated.

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  3. I hurt for you, Marie. I pray you get relief soon. Call the insurance company twice a day every day until you get the answer you need. Please take my advice.

    Praying for you. g

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    1. You're right, you have to be so proactive in regards to all aspects of your health. My doctor actually figured it out for me and my portion went from a $15 copay to a $25 co-pay and $495 each remicade infusion!!!! (one of the perks of being insured by a giant co. is great health insurance) HUGE difference huh. Hopefully I'll be able to get away with only getting the infusion 2-3x a year.

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    2. I hope so. However, sometimes you can't put a price tag on things. You are so frugal that it can pay off when needed and this is needed.

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  4. And I can pray for your little heart and your tired body.

    Stupid freaking disease.

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  5. Hope the insurance comes around soon. I hope and pray you get better soon. hugs!!

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  6. My sweet Marie, I'm so sorry you are going through this. I'm thinking about you and praying your insurance approves the medicine. Xoxoxo.

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  7. That sounds horrible! Hope you can find relief soon!

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  8. Marie I am so very sorry for your pain........have someone come over and give you a blessing and remember that Christ know exactly what you are going through. I remember laying in bed many, many, many nights when I was pregnant and in so much pain I could only thing of Christ and what he went through knowing mine and everyone else's pains. I just wanted to be taking out of my misery. I love you and will be thinking of you lots today.

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    1. When I saw this pic I immediately thought of you. Remember when your hair was like this forever and Glenn always made fun of you. The 'too sick to care or do anything about it do'.

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  9. Marie, I'm so sorry to hear about your RA. It's awful and I hope you will get the meds you need soon. In the meantime lots of prayers are coming your way.

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    1. Oh my gosh it's so good to hear from you Julia. Your thoughts and prayers are appreciated. It's tons better today and hopefully on the up & up.

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  10. Ugh, insurance companies aren't much fun. I'll pray you get some sleep the next couple nights.

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  11. Marie, I'm so sorry to hear this. I have arthritis, but nothing like what you describe. It's a big plus that the children are older and can help you as well as take care of themselves in a lot of ways. My prayers go to you.

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    1. So true, I am so glad I didn't have any serious issues going on when they were little. Having small children is hard enough.

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  12. Oh sweet girl, I am so sorry! Your pain sounds nearly unbearable and the fact the meds barely had an effect makes me worry about you! I hope you get the needed medicine very, very soon!!! Praying for you!

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  13. Oh honey. I just want to give you a hug. A really gentle one anyway. I am so sorry. It sounds like absolute torture. All I can do is pray. I hope you get some relief soon - either with the Remicade or something else.

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    1. Thank you, thank you. It was torture, but it's over thank goodness.

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  14. I hope you figure out how to get rid of the pain soon. I had childbirth type pain with kidney stones a few years ago and it was awful.

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    1. I've heard that it's awful. It just makes us more appreciative when our health is good huh.

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  15. I will indeed pray for you. For not only some relief but a speedy response on the remicade.

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  16. I'm so sorry. My mom has struggled with RA for decades. It's such a difficult disease.

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    1. There is so much out there today, I hope she has access to it.

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  17. Oh no, hope you feel better soon. Things like this are never fun, and constant pain interferes with so many things in your day-to-day life. Here's to a quick recovery!!
    xo TJ

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  18. I'm so sorry, Marie!!
    I hope you get something that will really help soon.

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  19. Marie, I will keep you in my prayers. I can't stand that you are in pain. It still amazes me that I've never met you in real life and here I am welling up thinking that you are suffering. Much love and peace to you.

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    1. Oh thank you, I am all better now, but I need to get things in order as far as preventative measures.

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  20. I pray that you will be approved soon too. This is just awful. I'm so sorry for what you're going through.

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  21. :( Feel better soon love. I'll be thinking of you.

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  22. Oh, I'm so sorry. I pray you get the relief you need!

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  23. As an arthritis sufferer I can completely understand what you are going through...wish I had a remedy for you my friend but I don't.

    I hope that you find some relief soon!

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    1. Thanks. There's so much out there, just need to get approved, but if not I'll fork out the money, not going through that again, & definitely don't want to cause any permanent damage.

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  24. Oh no! That sucks Marie. I am so sorry to hear you are suffering. What a nightmare, both physically and emotionally. You are in my thoughts!

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  25. Oh no chica! I was hoping you'd be in remission indefinitely. Keeping my fingers crossed that you get approved for remicade SOON.

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  26. My husband has arthritis, so I know all too well how hard it is to function. Its mainly in his knees and just getting up out of a chair and into a walk, is painful. Sadly because he has an artificial heart valve, a lot of the medications he could take to relieve the pain are not available to him.

    Hope you can be a squeaky wheel and get them to approve the meds faster! Hugs!

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  27. Oh my goodness I am SOOOOOOOOOOOOOOOO sorry! I will be praying for you. Complete healing. I believe in miracles. I pray you feel better soon!

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  28. O marie, I am so sorry! We will be praying that your new medicine is covered!

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