Being me really pisses me off

I’m going to tell you the truth: I am really pissed off.

I am pissed that my body hates me, that I can no longer eat sweets, or fries, or bread, that I can’t control the tremors in my hands, that my mind doesn’t work the way it should anymore.  I am pissed that I am no longer the person I used to be, that my looming unemployment is doubling frightening because I have so many limitations, that no matter what I can’t seem to get all of my illnesses in check at the same time.

I am just pissed.  And there’s nothing I can do about it any of it. I know I need to accept who I am and find a way to see the good in myself and my life.  But what I really want to do is throw an epic temper tantrum and then hide in my bed under the covers.

Today I just don’t know how to pretend to be “normal” because today I want to answer honestly when someone asks how I am.  I want to spew the truth and tell everyone what is like to live with a chronic illness (or three, in my case) that controls your life.

But I can’t. I know I have to function, I have to say “I’m fine,” I have to find a way to make peace with myself.  But wow, I am pissed today.

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And I’m Back

 

I haven’t blogged in so long.  I wish I had a good reason.  Mostly, I have just been busy.  I went back to work part time, and balancing work and home has been tricky.  I had a brief period of feeling a lot better, so I tried not to think about being sick during that time.  And then, the rest of the time, I guess I have still been trying not to think about being sick.  It depresses me.

But I guess that’s the way it goes.

So, an update: I have been completely unable to get off of prednisone. I actually haven’t been able to get below 10mg a day, which is pretty scary.  So, several weeks ago we added plaquenil to the mix.  Then we did my labs to check on where I am with things, and my inflammation numbers were still really high.  My pain was pretty high too again.  So, I went to the doctor about a week and a half ago, and we discussed options.  Dr. K recommended we add Enbrel once a week, and hopefully it will work well enough that I can get off the prednisone.  Here’s hoping.

I don’t know what else to say, honestly.  I am trying to be “normal.” I am trying to do chores, and go to work, and enjoy my family.  I am trying not to let pain consume things, but there are days I feel so completely defeated by pain, by the idea of pain, by the prospect of my life being this way.  I feel….tired.  It’s so hard to think about, and it’s so hard not to get discouraged by your body when your body doesn’t like you.

But, I am hoping the Enbrel is the fix.  Or at least helps enough to make it easier to be normal.  We shall see!  I will try to be better at updating here.  I’ll try not to hide away too much, from myself or from you all!

 

 

I’m an Acupuncture Convert

I have decided I like acupuncture.  Quite a lot, actually.

At first, I was undecided.  It didn’t do much for me the first few sessions.  It was awkward, finding the perfect chair, adjusting to being in a room with other people who are asleep or zoning out.  (I go to a community acupuncture clinic- for more info, click here)  I didn’t totally believe that putting needles in me at weird places would help me with anything.  I had actually started thinking I might quit.

Then, Linda found a good treatment for me (the ouchie one, as she calls it), and it’s really helped with my pain levels.  This past week I have had a cold and allergies on top of it, but acupuncture has helped so much.  It actually blows me away how much the acupuncture helped my symptoms.  Without cold medicines or anything else.  Just some needles.

So, I’m a convert.

Besides the obvious plus side of these good results, there are other aspects of acupuncture that I have to come to really like. Having someone pay attention to me, even for those few minutes it takes to get the needles in, is comforting somehow; Linda pays attention to where my pain is, what my symptoms are, what I need at each session, and she tailors the treatment accordingly.  I like that.  I have also gotten to a good place mentally when I am there.  It’s like my brain now knows: this is quiet time.  I zone out, doze a little (unheard of for me, lately).  I relax.

On top of that, there’s a positive vibe there.  I am not sure I have ever been one to think about positive or negative energy.  I have never believed in that kind of thing, particularly.  But I think I get it now because there’s a positive energy that comes from Linda, but also comes from the entire experience.  I feel good when I am there.

All in all, I’m so happy L. talked me into going.

On a somewhat side-note, I talked to Linda today about whether there’s a treatment she can do to help with the prednisone taper that is coming up (will start the taper down on Saturday- dreading it).  She is going to try the NADA treatment, which is essentially, standard acupuncture treatment for drug and alcohol addiction recovery.  So….should be interesting.  Will keep everyone up to date on that because I know getting off prednisone is a big problem for many of us with autoimmune diseases.

 

The Lies We Tell Ourselves

I just posted something on facebook that I decided would be a good blog:  “I am going to pretend that all of my hair that is falling out from my MTX is my newly found gray hair. I am also going to pretend that I look good in my new sun hat. Pretending is good.”

After I wrote this, I started thinking about all the other lies we tell ourselves.  Oh, not just as sick people. Everyone does it.  Things like: My job will get better if I am patient or This dress makes me look thin or He hasn’t called in a week but that doesn’t mean he isn’t interested.

We all do it.  It’s how we cope with life, how we go through the day to day.  Sometimes those lies turn into full-out dangerous denial (he hit me because he loves me too much), but for the most part it’s normal.

We (sick people) do this, too.  We convince ourselves of positive outcomes because how else can you go through each day in terrible pain.  We tell ourselves things like:

Tomorrow I will feel better.

This medicine won’t have any side effects.

My doctor knows best.

Those could all be true, of course.  But we have bigger lies we tell ourselves:

I am not missing anything by not being able to go out with my friends

Moon face is actually flattering on me.

It’s my fault I’m sick (if you are telling yourself this one- CUT IT OUT! And yes we all do it)

Today my lies are all about vanity.  I hate to buy a bigger sun hat today because the first one I bought (that did look not terrible on me) didn’t shade my face enough.  I don’t have lupie sun sensitive (thankfully!  sorry to those of you who do!), but I am on several meds that will make me photo-sensitive so I am being cautious.  Anyway, I bought a bigger hat today and I completely trusted my style-deficient partner to tell me which looked best on me.  I looked in no mirrors.  All very dumb.  But I bought it anyway, and now I’m going to tell myself I look fantastic.  Because that’s what I need to believe.

I also need to believe that those gray hairs I have spotted lately are the ones falling out in bunches everyday.  That lie kills two birds.  Look how efficient I am.

So, what lies do you tell yourselves to get through the day?