Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Have any of you thought this? Is this really it? Seriously? Surely it's another rare fluke. A mosquito bite from last summer perhaps. All the damn chiggers in my yard caused it.
No. Be honest.
I remember lying in bed, crying. Crying and crying night after night. My shins, my whole legs hurt. Oh how they hurt so very much. Mom told me I had growing pains. I secretly thought how I was like my grandma.
I was 6. This happened until about 9 years old.
I had a horrible pain in my middle finger. I questioned, do I have it? Have I turned into grandma? The pain subsided.
My thumb a year ago. How it felt jammed. The daily pain. Just one joint, is this it? Did it happen?
Numerous twinges. All lasting a week to a few weeks and fading.
The thought never left. Am I my grandma? Has it happened?
My grandmother battled RA since, hell, since she was probably my age (35) until she passed in 07. Is it strange I always knew I'd get it? Did my thinking I'd get it help me get it? Was it intuition? Does it matter?
I'm struggling. It's been 5 months since diagnosis. Every day hurts. My knuckles in my hands, my base knuckles in my toes, my ankles, my wrists. Twice my jaw. Twice one knee. But this constant inflammation, on prednisone no less, this constant pain in standard joints (plus a diagnosis per a rheumatologist of course) leads me to a shock some evenings.
Is this it? Did this seriously just happen? I always thought it would, but never believed it would. Not having the blood confirmation (I had my first flare three weeks before my first blood draw) lets me hope. This isn't RA. It's a rare disease, a spiritual correction. It will fade, go away.
I know it won't. The pain. The inflammation. The agony every moment of every day. It IS real, I know.
I just. Sit. I sit. I sit and think still, is this real?
I haven't fully accepted yet I suppose. Thanks for reading, if you finished;)
No. Be honest.
I remember lying in bed, crying. Crying and crying night after night. My shins, my whole legs hurt. Oh how they hurt so very much. Mom told me I had growing pains. I secretly thought how I was like my grandma.
I was 6. This happened until about 9 years old.
I had a horrible pain in my middle finger. I questioned, do I have it? Have I turned into grandma? The pain subsided.
My thumb a year ago. How it felt jammed. The daily pain. Just one joint, is this it? Did it happen?
Numerous twinges. All lasting a week to a few weeks and fading.
The thought never left. Am I my grandma? Has it happened?
My grandmother battled RA since, hell, since she was probably my age (35) until she passed in 07. Is it strange I always knew I'd get it? Did my thinking I'd get it help me get it? Was it intuition? Does it matter?
I'm struggling. It's been 5 months since diagnosis. Every day hurts. My knuckles in my hands, my base knuckles in my toes, my ankles, my wrists. Twice my jaw. Twice one knee. But this constant inflammation, on prednisone no less, this constant pain in standard joints (plus a diagnosis per a rheumatologist of course) leads me to a shock some evenings.
Is this it? Did this seriously just happen? I always thought it would, but never believed it would. Not having the blood confirmation (I had my first flare three weeks before my first blood draw) lets me hope. This isn't RA. It's a rare disease, a spiritual correction. It will fade, go away.
I know it won't. The pain. The inflammation. The agony every moment of every day. It IS real, I know.
I just. Sit. I sit. I sit and think still, is this real?
I haven't fully accepted yet I suppose. Thanks for reading, if you finished;)
Those first years are the toughest emotionally. You're going through a grieving process. Eventually you'll come to terms and some acceptance. But the war will never end, only individual battles are won or lost.
You have to decide what type of soldier you are. Are you a front line scout or back in armored infantry?
So teaching, babies, big kids, teens, yup. I know I'm a front line soldier. I just am a soldier that stares at the stars some nights and questions things, wonders why, and realizes the end comes for us all. I question, am amazed at my life's journey, but must keep on living.
Life isn't over YET! I have, what 35 if I'm lucky, 45 if I'm blessed more years left.
I'm fighting for every last minute.
options, life situation, financial considerations make each case different. you have a wide range at home from diapers to teens? well then, you ARE in the trenches. you are a home schooler? that is a 24 hour on job. I envy and applaud you. We have some home schoolers that I know about through my work and they do an A plus job which I am sure you do. Now these home schoolers can get tired or down now and then and they are not battling an auto immune disease nor having the ghost of relatives past make them think about what their next 30 year stretch will be like.
it's OK not to full accept 5 months out of the starting gate.
How many kids do you have at home that you are home schooling? what are the kinds of breaks you get daily if any and who spots you if anyone? Do you see any changes in this situation when you look at the next 3 years?
hugs
Ros
so i applaud you
to me it is just an option, like boarding school, private school, religious school, home schooling, early college, charter schools, really good public schools with great funding from a wealthy property tax base funding in the wealthy burbs, the whole thing. when it is freely chosen and with joyful reasons it's something darn near special. at my unitarian church we have a whole bunch of home schoolers. their kids are incredibly dynamic. good for you. well kind of good for you. you are ON 24/7. BUT happy to hear you have a few breaks :) and I hope the joy the kids give to you helps mitigate the crap of this disease
Ros
I don't envy you having to deal with this while having toddlers at home. I was hit hard when mine were teenagers. That's not easy, but nothing like having babies.
I can not imagine trying to raise kids while dealing with this disease. I never had children and may regret that decision some day, but for now I am glad I do not have that on my plate.
Looking back I've had immune type issues since my teen years but my parents didn't believe in much "doctoring" as they put it, and were advocates of mind over matter and "walking it off". I agree the tincture of time and muscling through can help some but there are real biological illnesses we need help for. Although I saw some family members suffer with musculoskeletal issues I always thought if I stayed healthy enough physically and mentally I could prevent it.
No such luck, I have not 1 but 3 musculoskeletal diagnoses that cause daily pain and have the same sentiments as you. I know I did not bring this onto myself and hope you don't really feel that way either really. You may, as I am, be strong intuitively and get senses of what is to come. I now realize it helps me prepare but does not give me the ability to prevent everything. No way would we be tolerating this type of pain and limitations if we could snap out of it.
I'm still waning back and forth with acceptance, easier to deny it on days we feel good. This is tough.
pain meds . going to take a nap now...
Hard to accept. No your not your grandma & I'm not my sister.
Scared the crap out of me when I was diagnosed. Cried like a baby.
Watched my sister suffer & go through numerous surgeries.
Then again the treatments were not available back when.
Who in their right mind would want this?
Takes some adjustments & the hardest thing acceptance.
I am blessed to have a person in my life that tries very hard to understand. She reminds me I still control my life.
You know it's harder then heck but I do not want to hand my life over.
I want to continue to make good memories & most important laugh.
I'm trying hard not yo let RA & Chronic pain define who I am.
Like you I often think is this real? Is this my life?
Yet there are so many with so much worse to deal with.
I do get it. I hope it gets better for you.
Sammy