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.
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.
ReplyDeleteI 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
Yes just leave your 7 kids and come be with me :) Just knowing you're thinking of me is enough.
DeleteOh 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.
ReplyDeleteHonestly neither did I, I was taken completely by surprise. Thanks for your words, greatly appreciated.
DeleteI 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.
ReplyDeletePraying for you. g
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.
DeleteI 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.
DeleteAnd I can pray for your little heart and your tired body.
ReplyDeleteStupid freaking disease.
Totally stupid. And thanks.
DeleteHope the insurance comes around soon. I hope and pray you get better soon. hugs!!
ReplyDeleteMy sweet Marie, I'm so sorry you are going through this. I'm thinking about you and praying your insurance approves the medicine. Xoxoxo.
ReplyDeleteMiss you & thanks.
DeleteThat sounds horrible! Hope you can find relief soon!
ReplyDeleteMarie 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.
ReplyDeleteWhen 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'.
DeleteMarie, 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.
ReplyDeleteOh 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.
DeleteUgh, insurance companies aren't much fun. I'll pray you get some sleep the next couple nights.
ReplyDeleteMarie, 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.
ReplyDeleteSo true, I am so glad I didn't have any serious issues going on when they were little. Having small children is hard enough.
DeleteOh 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!
ReplyDeleteOh 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.
ReplyDeleteThank you, thank you. It was torture, but it's over thank goodness.
DeleteI 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.
ReplyDeleteI've heard that it's awful. It just makes us more appreciative when our health is good huh.
DeleteI will indeed pray for you. For not only some relief but a speedy response on the remicade.
ReplyDeleteI'm so sorry. My mom has struggled with RA for decades. It's such a difficult disease.
ReplyDeleteThere is so much out there today, I hope she has access to it.
DeleteOh 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!!
ReplyDeletexo TJ
I'm so sorry, Marie!!
ReplyDeleteI hope you get something that will really help soon.
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.
ReplyDeleteOh thank you, I am all better now, but I need to get things in order as far as preventative measures.
DeleteI pray that you will be approved soon too. This is just awful. I'm so sorry for what you're going through.
ReplyDelete:( Feel better soon love. I'll be thinking of you.
ReplyDeleteGet better soon!!!
ReplyDeleteOh, I'm so sorry. I pray you get the relief you need!
ReplyDeleteAs 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.
ReplyDeleteI hope that you find some relief soon!
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.
DeleteOh 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!
ReplyDeleteOh no chica! I was hoping you'd be in remission indefinitely. Keeping my fingers crossed that you get approved for remicade SOON.
ReplyDeleteMy 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.
ReplyDeleteHope you can be a squeaky wheel and get them to approve the meds faster! Hugs!
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!
ReplyDeleteO marie, I am so sorry! We will be praying that your new medicine is covered!
ReplyDelete