Hope

General
1

I am afraid to say it, but I think I am…improving. I have actually had 4 good days out of the last 7, and my bad days weren’t that bad. I still have some aches and pains on the good days, but I guess that is to be expected? I have a goal in my head of having 3/10 pain and medicating with NSAIDs and a Vicodin for break through pain, along with my PsA meds. I think I am getting near that goal. I don’t know if I should expect to be pain free? I’m a little bewildered by how fast this change has happened. I’ve felt like the stuff you scrape off of the bottom of a shoe for months now. How is it possible to have such abrupt change?

It’s weird, but I am a little scared. I’m afraid to do too much, thinking that if I overdo it I’ll go right back to the hell I was in. But it’s funny, today I was helping with dinner and I opened a pull top can without using a spoon to get it started for me. My husband just about passed out! “YOU OPENED THAT CAN!” I looked down at it a little bewildered to see that I had, indeed, opened a can. I will just take it slow, until I regain some of my strength and confidence.

I think The 4th Remicade infusion really did it for me. Its slow progress, but, by god, it’s progress! I am adding a touch of MTX to my regimen (injected, of course!). And I am making an appointment with the primary to start tapering off of opioids. I’m also adding massage and warm water PT to help me with pain while I step down from the drugs. I love the new Rheumatologist. He is honest, into reading research, a great educator, straight forward, and doesn’t mince words. My kind of guy.

I just wanted to write this to give everybody that is hurting, struggling, and frustrated a little bit of hope. I was at a point where I had accepted disability as a part of my immediate future. I had the idea that, “This is as good as it gets.”. I guess I was wrong. I think I had lost hope for anything to get better because I had been miserable for so long. Since my last infusion on 2/25, my husband and I have seen marked improvement for the first time. It is very slow, but we are sure that there are changes happening, like opening the can. Yesterday, I couldn’t open soda bottles; today I can.

Please don’t lose hope. I know how awful and frustrating waiting can be. How hard it is to find a doctor who listens. How much we worry about the added emotional and financial strain on our loved ones and mates. How life altering this can be. How lonely it can feel. Please continue to hold on to hope. Maybe it won’t be this drug, maybe it will be the next, but don’t ever lose hope for your life.

So Many Huge (((Hugs))) For All of You!

Claire Elaine Milam
GrumpyCat

2

Oh Grumpy I am so glad for you! It has been so long and now you have a physician you like and a med that works!

Happy little clappy dance <3!

3

Thank you Girliest Michael! It’s such a surprise, I kind of feel like I hit the lotto! I’m just taking one thing at a time, like I said, I’m afraid it will all go away. But even if it does, I have had some really pleasant, peaceful days this week.

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That's absolutely wonderful! Big congrats that you've had improvement!

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I told you so........ Hey I don't mince words.........

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I was thinking of you as I wrote those words! He has a slightly better bedside manner that you do :-). He was also HAPPY to prescribe the MTX. Thanks for giving me the research so that I could tell him why i wanted to add it to my therapy and understand his answers. I really appreciate you, even though we have butted heads. Thanks for your honesty, Lamb.




tntlamb said:

I told you so… Hey I don’t mince words…

7

I was pleased to read about your improvement. It is such a shame that it takes so long and how difficult it can be to get to this stage for so many of us and how persistent we need to be.

I do hope you continue to see improvement and it lasts forever.

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Thanks so much Bella! I will still be around. I love this group! You all have helped me so much emotionally and helped to keep me focused, strong, and hopeful. It is a shame that it takes so long. Because of my occupation, I think I might actually be able to do something about it. That’s part of why I want to get better. I think I want to change my career entirely and become a patient advocate for people with autoimmune arthritis. I don’t know how to begin, but the idea started a few months ago, and has never left, and instead keeps growing.

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That's so good to hear Claire, I'm really pleased you are seeing a little light at the end of the tunnel.

I never expect to be pain free, I'm just going to think of it as and added bonus if it happens.............I was pain free for the first time in years when I was given morphine in my recent fight with a kidney stone. I don't know about you but, as long as it mostly low level pain I can deal with that :)

Onwards and upwards x

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Its beautiful Mimi x <3

mimiB said:

That is GREAT ! This post really encouraged me :) I am so happy for you. I am sharing a drawing I did to remind myself of HOPE. Blessings to you and all my friends here.

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Im so happy to hear this. Thats for shedding light and sharing hope

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Hi Grumpy Cat

I just know you will use every opportunity that comes your way to be an advocate for us auto immune arthritis sufferers.

Good luck with your new quest.

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Mimi I love your drawing! I may have to steal ideas from it and do some Art Therapy! It is wonderful.

Louise I know what you mean about the morphine. The only time I have been pain free in years was during a colonoscopy! They had given me Fentanyl and I didn't feel a thing! Talk about side effects I wasn't expected all pain to disappear.

Girliest of Michaels <3

14

Oh, my, Mimi!
That is beautiful! Thanks for sharing it, I absolutely love it! :slight_smile:

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Grumpy Cat what awesome news! I am so excited for you! This is what I look for, not a big overnight change but the little things that come back to us on a daily basis. I think when we hear stories like yours it gives us all hope. I no longer post the positive thoughts and/or ideas for change because so many people on this site were against me doing it here but I am definitely stealing your story (with your permission of course) and taking it to the other site. I think it is great to mark our milestones and to look forward to the differences we can hope for. After the past 2 days I have had (not PSA related) it was great to read your story tonight, it makes me happy!

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MAT,
of course you have my permission to use this! I wrote it to give people hope for the future and the more people it reaches the better; you can even use my full name if you’d like; I do not mind. I do miss you here, and hope you’ll come back to visit often.

It seems like every day, something gets a little better. Sometimes I don’t even notice that I am doing a task “normally” until my husband points it out to me. :slight_smile: We all could use a little more hope in our lives; without it, I think the disease starts to own you and you can’t live like that and expect to get better. It is so hard to hold onto it when you are down and out, but that is when you need something to cling to hope the most!

Don’t lose your optimism! It’s a great quality to have and it gives you an automatic leg up with PsA and life in general.

(((hugs)))
Claire




MAT said:

Grumpy Cat what awesome news! I am so excited for you! This is what I look for, not a big overnight change but the little things that come back to us on a daily basis. I think when we hear stories like yours it gives us all hope. I no longer post the positive thoughts and/or ideas for change because so many people on this site were against me doing it here but I am definitely stealing your story (with your permission of course) and taking it to the other site. I think it is great to mark our milestones and to look forward to the differences we can hope for. After the past 2 days I have had (not PSA related) it was great to read your story tonight, it makes me happy!

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Oh, and MAT, I think we’ve gotten a little more upbeat since you left. I think we were feeling a little sorry for ourselves and when you left, things started to perk up a little. Give us another chance!

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Hi Grumpy,

GREAT NEWS!! I do hope this continues and you feel better and better each day!! Best wishes! :-)

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Yay !!!!!!!!!!!!! Great news. Keep us updated.