I have Rheumatoid Arthritis, an auto immune disease that can be very devastating. For me I have been Blessed because mine isn’t really as bad as some others. For that I am so grateful. You see many don’t realize exactly what this disease really is and what is does to the body, the mind and to the spirit so let me tell you a little bit about me and how I deal with this disease.
Thank God from me, I have to say my pain can sometimes be subtle, just a little aggravating twinge here or there but mostly in my hand, my right hand actually and from there to my right foot. That’s actually how my journey with this disease started. Little did I know it would be a lifelong journey for me. Anyway, my pain isn’t as bad as some that I see on the forums that I’m lucky enough to be a part of and blog for and I have to say when I hear how much some of them suffer and how debilitating their pain is, I really realize just how Blessed I am to not be at place with my disease as they are with theirs. Still I feel their pain emotionally for them because I am able to visualize exactly how they feel because the pain that I do feel is a pain like no other but nothing like theirs.
My journey with this disease hasn’t been a bad one but I have had my bad days. Like I said, I am in no ways at my worst with RA, that’s what we call it for short for those of you who don’t know the lingo. The worst can cause one to have more than debilitating pain, be confined to a wheelchair, have deformities and a host of other issues that are life threatening so that is why I will say again that I am Blessed. Still feeling what I do with this disease makes me realize just how much worst it can be. I have my bad days where the pain can be constant and all that I can do is just rub my hand to try to relieve the pain knowing that won’t work but it somehow makes it comforting. But there’s nothing worse than having your feet hurt and having a problem trying to walk. I had that experience and it was my first and I can only hope it is my last but I honestly don’t think that it will be. You see as I said earlier, my right hand and right foot was my first indicator but so far I’ve moved on to both feet and just a little with my left hand. I guess I’m one of those unconventional ones. Well you have to understand RA to understand what that means. It typically affects both sides of the body the same but I’m just a little different.
One big problem we have with this disease is understanding which causes us to have to deal with this alone instead of having those around you helping you to make it through the tough times. There are times we feel so isolated because of the fact we have run out of ways to explain exactly what we’re going through and even when we do, it’s not accepted as the truth. I do not have this problem with those in my life, even though I must admit sometimes when I am feeling bad and with this disease there are many times, I find that I don’t always say when I’m sick. I refuse to admit the truth because I feel like I’m saying the same thing all of the time and I feel people get tired of hearing it or they feel just maybe I’m not telling the truth. It is a shame though when you feel this way especially when your disease is chronic and that means it’s an always disease. You see this too is one of the struggles we face having Rheumatoid Arthritis. I blog for myself as well as other sufferers for understanding which brings with it support but understanding is one of the hardest things that we battle next to our disease itself.
Going to Kaiser Emergency Medicine for unexplained headaches which I believe is caused by my neck issues and shoulder issues but feeling the pain pounding in your head and trying to ignore it isn’t going to last very long and it doesn’t make it go away. For 4 weeks I did ignore it but ended up there and given plenty of meds which really helped but you’re left with the hope that the headache doesn’t come back. These are the things that many don’t understand about this disease and how unexpected things can change for you so quickly. Things aren’t as simple as you see on the commercials showing how you take your medicines for Rheumatoid Arthritis and all is well. That is so far from the truth. You still go through a lot while taking meds and this is what I deal with along with all of the other people suffering from this disease. The truth is our disease is one that we hate and hate having.
So as I deal with this disease, my medication, while still learning what I should and should not do I am sometimes overwhelmed and truly at a loss. At a loss not because I am so sick but just having this disease and what comes with it. I have to have infusions every 6 months which last 4-5 hours and that’s very tiring, hoping that it works and not have to get another medicine, worrying about my immune system, etc. I know it’s a lot but I know it could be worse. God has Blessed me and I know this but He knows that we get overwhelmed sometimes. The good thing about it, He helps me through it every time. I have my moments and I have made it through first with His Grace and the love of my family. Thank God for my family.
This disease is a vicious one that has attacked many people and in many ways. I will keep blogging to hopefully make others aware of its devastation. I just wanted to share a little bit of my story and so I did. I hope it opens a few eyes to our plight.
photo credit: gdj and geralt/pixabay.com
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