I’ve been going through some things lately…a lot of which I don’t really want to blog…but it all comes back to the fact that I’M SO FREAKING TIRED OF BEING REMINDED THAT I HAVE RA.

I go shopping.

I want these.

But I have to buy these.

I have dinner with friends and we talk about our latest adventures.

They’ve done this.

I have not.  Nor can I. Not that I would really want to…but I would at least like that to be MY decision to make.  Summers with RA can be really hard.

I’ve reached the age in my life where we’re now starting to have that elusive thing called “disposable income.”

My friends are buying this.

OOOOHHHH, how I need that right now.

But instead, I’m buying this.

It just sucks.  Really sucks.

My friends are nauseous from either drinking too much the night before or from being pregnant.  (Obviously, the pregnant person is not nauseous from drinking too much.  Just had to make that clear.  THAT would be a serious problem!)  Me- I’m nauseous from methotrexate.  And let me tell you, that does WONDERS for my moods.  Things that would normally bother me a little bit end up being THE. BIGGEST. DEAL. IN. THE. ENTIRE. WORLD.  Example: a normal person understands when a restaurant screws up a catered lunch for a client.  Understands and is not thrilled…but doesn’t attribute it to a vast conspiracy network. No, my dear, the service industry is not out to get you.

And then someone who really doesn’t know you tells you to find the “bright side” of having this thing.  “Think of how much you’ve grown personally and how much you’ve learned about life in dealing with this.”

To which I politely say “how do you know I wouldn’t have learned those things about myself and about life WITHOUT this thing?”

Nope, there’s an ice cube’s chance in hell that I’ll ever be thankful to have RA.

I just sit around, sometimes I lay around, with what I like to call “flare hair.”

Yep, that really is my greasy, nasty hair that my friend made me photograph because it was so out of control.  Laugh away!

I know I went kinda picture crazy with this post.  But a picture speaks a thousand words.  So I gave you SIX pictures.  Can’t you see the disparity that I’m seeing right now?

So that’s kinda where I’m at right now.

Blah, blah, blah, blah, blah.

13 responses »

  1. “Flare hair”…now I know what to call it.

    I completely understand. I am fed up with the reminders too. Even though I”m in a good place right now (Cimzia’s working) I am not normal, my old self, over it, cured…whatever, My hands still don’t work properly, my feet still hurt more than they should.

    We should just buy hats, huh?

  2. I also know how you feel. Went to Speed Street Fri, walked from car to wall by Josh Turner set and sat there til it started, didnt get to walk around like I usually do. sorry didnt get to get up with ya. I really love walking around looking at the vendors and eating the food but didnt get to see any.
    Same thing with the shoes, I feel like an old lady at my MK meetings, I am only 45 and have to wear grandma shoes or I will pay bigtime.
    Also, came home and slept for 3 hours instead of going to my fun Tues meeting.
    Thanks for letting me vent and dont ever feel that you are alone and that no one understands….I do! 🙂

  3. Hey, here’s a tip for flare hair… When I had the MCP joint replacements done on my hands, I had weeks where I was one-handed – one gimpy-handed, to be precise, so manipulating a brush and blow dryer was nearly impossible. My brother came up with a solution.

    He has guns. Rifles, shotguns, pistols, etc. Target shooting is one of his hobbies. He also does maintenance on said weapons. They make this thing that looks like a giant padded clothespin, standing verically on a block of wood, for holding gun stocks while you work on them. This device work great for holding a blow dryer, so you only need one hand for the brush and whatever. I’m not sure where he purchased it, but I suspect you could find one online somewhere.

    It’s weird how something so far afield from one’s normal life can be so helpful 🙂

  4. Dear Blah ,
    Its scary and sad how much I can relate. Not from RA, but from Crohns Disease. Right now, Im in total remission, but you still live with the gluten intolerance, that your frigging DR wont tell you about. The depression, anxiety, (uh oh, my stomach hurts, is this a flare?) the paranoia, the on edge feeling, wheres the bathroom??? Even in remission, there are the potty episodes. The days of not being able to go, then the days of going all day. The joint pain from the high doses of Predisone from 20 plus yrs ago. And, no one understands how you feel, come on girl, get over it, lets go shopping…….. when all I want to do is “take to my bed”. (thats what I call it, when I need a few days to waller, feel sorry for myself, etc) And dont get me started when I hear someone going on bout do I skydive or hike??? Really?? Thats all you have to worry about? Get a life, I couldnt do either one. There have been ski trips, horse trips, and list of activities Ive had to pass on thru the years. And add working 40+hrs a week at a cop job that you hate (but got to have that insurance) and praying you dont have a potty episode in front of a prisoner, and you have my life…. I feel ya girl, and dammitt, we need a worry free, pain free, healthy day… I feel better…

  5. Oh, I laughed. But not so much, because I am so in the same place. I am (was?) such the shoeaholic, I still have them in their beautiful little boxes, and I wear the same three pair of boring flats to work every week. Thank you for validating my increasing sense of irritation/paranoia. It just blows sometimes.

  6. Can I vent a bit too? The shoes really got me… (heavy sigh)
    I used to love to wear cute sexy heels. I’m trying to find something to wear to my nephew’s wedding and it’s been FRUSTRATING x100. The shoe thing still (after 16 years of RA interference) pisses me off!!!
    I’m also with you on the cost of RA. I still have to work full time so “flare hair” (love that!) is not an option but I thank the Gods for ponytails and helpful spouses!
    Oh and the “find the sunny side” speeches… (Aaarrgg) I tell people who have those kind of well meaning (but for me meaningless) words of wisdom, just about what you said but with cuss words! Geesh we have to survive the daily battle AND find the silver lining??? Some days that “wisdom” is worthy of a gut punch.
    Then I just have to fantasize my hands aren’t so flared up, mangled and sore that I could actually punch someone! hahaha
    btw AJ… Methotrexate is some freakin’ awful sh*t, I’m so sorry you’re battling that.
    (again… don’t we suffer enough! DANG!)
    I am now only on Celebrix and acetaminophen for some relief because nothing else is an option. RA came to me at age 34 and ravaged me before anything available at that time could help.
    Guess I’m suppose to just wait for surgeries (good luck affording them and the recovery costs) and… death.
    But I tell you what… I’m going down fighting and bitching all the way! hahahaha

    Joan… I’m so happy for your success with Cimzia and hope it continues!

    Tula… thanks for the “tool” tip, I’m looking for one this week! Tools are our buddies… right? I love finding anything that will help me be independent!

    Mental hugs to all my fellow fighters.

  7. I’ll take those shoes! The pointed ones! Will I wear them? Absolutely not. I plan on using them as my new ra weapon. I will clobber all the “you look fine” commentators. I will borrow the kayak so I can send some not so kind ra docs over the edge :-)…down the river so to say. And then I will borrow the hammock so I can finally sigh and relax. I have done my ra battles for the day 🙂 Loved your post…you made my day 🙂

  8. Flare-hair! That is a good one! you expertly expressed my exact sentiments of this frikin’ awful disease. I’m currently flaring – couldn’t even open my own bottle of pain meds to try to dull the pain enough to get dressed for work (of which I am already late for). Wanted to wear a cool jazzy outfit, but thanks to the flare have to find something that matches with tennos shoes (1/2 a size too big to fit the orthotics).
    By the way you rock – glad I foumd your blog!

  9. I understand your pain on the shoes and adventure front! I am 16 and have been told I have RA and its very very bad. I have pro coming up and everyone is buying really cute high heels and I have to wear flats and if im bad boots. Not only that my friends are going on a word challenge for a month hiking while i have to stay at home doing nothing except maybe play piano if i am okay :/
    Flare hair is one of my favourite hairstyles *cough cough* I think it would go down so well at prom :’)
    a few months back my GP perscribed me with a too higher dosage of methotrexate and the salazar sulphazine stuff and i came down with a severe case of tonsilitis with practically no immne system and almost died there and then, but thankfully I was submitted into the hospital in time. I find now that my methetrexate is so hard to take, its only 20mg but It is a test for me!
    I am so glad to hear there are others not just me who have the frustration and angst that I have!!
    All the best
    bm x

  10. I am so glad I found your blog last month. I have been going through mood swings and spending a lot of down time off of work and just getting tired of coping at times when I want to be living. I have a great support network and so I am thankful for that, but like llisa said, the wisdom comes like a punch in th gut some days.
    I get my hopes up reading about studies.
    They say they have identified T-cell reactors and we are getting closer to better pain management.
    Then I have a purse day out of desperation to find something to focus a gain on amidst the fog. And can’t stand look at the monitor much less typing. In short thanks for writing Amanda.

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