Dealing with Ignorant people

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My right hand is flared right now and really sore but I need to get this out.  I’m sick and tired of people telling me to buck up or it can’t be that bad or you’re not even that swollen, another, your pain tolerance must be really low.  Well Fuck off assholes and bitches.  You try to handle this disease and mange it every day alone with diabetes.  It’s not fun.  People who think RA is just a farce or isn’t as bad as people say it is, you all can go climb up a tree and stay there.  

This is very short because it really hurts to type, my hand just gets more swollen it seems with every movement.  On Saturday I was with a friend, at lunch I showed her my hands and she was like wow they are swollen and a little red, I said yeah, I’ll show you what they look like in a few hours.  So like 5 hours later we were at an ice cream shop and I showed her my hands, she was like OMG Dawn it’s way more swollen and super red, doesn’t that hurt, I said yeah it does but I really want this cone lol  I’m glad she is supportive because we’re going to be moving in together.

Okay, I have to get going now. #rheumatoid arthritis #invisible disease

Exercise helps Rheumatoid Arthritis-common misconseption

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I can’t tell you how many times I’ve been told by friends or family, you just need to exercise more, that helps.  First of all when did they become my RA Dr?  My RA Doc even said exercise is good for your body, yes, however, it may feel good at the time but you will probably pay for it afterwards, which is totally true. I’ve walked my dog Tucker, 4 days in a row now.  My joints can feel it, not just my knees and ankles, even my hands from holding the leash, people without RA don’t realize how many joints you actually have in your body and that RA doesn’t just affect your joints.

My dog is happy that’s for sure and yes I like to get out of the house, I just hate keeping the narcotic companies in business.  I try hard not to take my pain meds unless it gets bad but why wait and suffer.  I may go a few days without taking them but I usually take one at night so that I can sleep through because for some reason as soon as I lay down my body starts talking.

So for me and a lot of RA patients that I know, exercise does not help, just in case you were wondering.

My first Actemra Infusion

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I was a little well a lot anxious but not because of the actual infusion, it was the setting, it reminded me of a chemo setting and I took my mom to all of her chemo’s, it didn’t help that it was 2 days before the 7th anniversary of her death either, I did tear up something fierce but after that it was ok.  It only took about 2 hours total because the nurse must have been a sadist because she couldn’t find a vein, took her 3 time before she had someone else do it in one try.

I am not sure if I’m feeling better or not.  I told a friend, who also has RA, that I haven’t had to nap. I do have more energy but the swelling and pain is still there.

I walked my dog today and funny thing is, my ankles and knees are “ok” but my right hand is red, hurts and is swollen.  RA makes no sense to me at all.  You can’t figure it out if you wanted to.  There is no rhyme or reason to it.

I hope that Actemra works, I’m anxious to see what the blood work says after the next session.  I hope that my liver behaves itself.  It would be just like my body to reject something that helps.

That’s it for now.  Thanks for reading.

Huh?

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yes, huh? I took some pain meds and that is how I feel right now, however, I am still in pain but I don’t care much about it until I get up or until I type, like now.  On tv is keeping with the kardashians, I’m about ready to fly to southern California and telling all of them what is up.  The only one that has any sense in that family is Kloe.

I’m sitting here my eyes closed, typing feeling the heat on my feet from whatever it is inside my body that is acting up.  I’m bored and I’m lonely.  This disease really makes you a loner.  I’ve always been sort of a loner but this is to the top of being a loner.  I want someone in my life, I want to feel loved and cared about.  I haven’t felt that since my mom told me she loved me last, June 16, 2006.  and on that note, it’s a short post, good night.

RA and Relationships/Friendships

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Basically for me nobody in my life could give 2 shits about my RA and how I suffer every day, what my day is like.  I have diabetes as well and I have bipolar.

I was at my primary dr’s today and she had a follower and she was trying to explain me to her and she said, dawn just has one thing after the other come up and it’s always complex and not easy to diagnos and I thought hey, now that woman gets me, I’ve been seeing her for about 3 years now and if I didn’t have her I would be so lost.  She is probably the best relationship I have in my life, sad to say but it’s true, other than Tucker.

It’s really hard to have friends or keep friends because either you’re in pain or you’re sick and on a day when you’re feeling “ok” to do something, nobody is around.

I did meet someone who has RA, I met her from a group on FB, we met at a place by my house a few months ago, she’s super sweet, awesome person.  Then we talked a bit here and there on FB, then we went out a few weeks ago to a gay bar, I’m lesbian(don’t be scared) she’s bisexual(don’t be scared) that was a lot of fun, I decided not to drink so she could and she had a great time with her friend that she brought.

I recently had a pretty bad kidney infection and she urged me enough to come and get me and bring me to the ER.  Such a kind soul.

The Beginning

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I was diagnosed with RA early summer of 2013.  I had a bad flare on my left hand that put me in the hospital because they had no clue what it was, they almost did surgery on it!  A week after the hospital I started feeling this stabbing pain in my right foot, I looked one day and it was swollen, red, yellow and hurt like hell.  I made an appt with primary and she was like WOW, look at that foot and I’m like yeah what is wrong with me!!  So she put me on 40 mg’s of prednisone and referred me right away to a Rheumatologist. After 22 tests it was confirmed that I indeed had moderate to severe RA.  I went through 3 oral medications that did nothing but make me sick and hurt my liver.  I have been on 3 biologics as injections, nothing has worked.  I go in on the 17th for my first infusion of Actemra.  I hope it works.  I’m in some pain as I write this now, my hands, wrists, palms, elbows and feet knees and toes knees and toes! ha j/k you see you HAVE to have a sense of humor if you have this disease because not only does it affect your joints, it kills your immune system and then every single damn drug that can take kills it as well, so you’re always sick and nobody understands you, unless of course you happen to find a friend that has it as well.  Sometimes even then it’s hard.  My family doesn’t care about what I go through, if my mom were here I know she would be there for me.  She died of Pancreatic Cancer 7 years ago June 18 2007.  The thing that keeps me going  is my dog Tucker, he is my salvation, the only one who will never be mad at me or disappointed.  He always greets me a happy face and a wagging tail.

 

Below are pictures of my very first flares oh how I miss those day! ha, not.ImageImageImage