Wednesday, November 20, 2013

My Own Pity Party

I promise I won't do this very often...but today I need to.  I just have some feelings that I feel I need to share.  And, let's be honest...about this whole blogging thing...it really is for me , isn't it?  LOL  I mean, of course there are all the things I hope to accomplish through blogging, like helping other people in similar situations, at the very least, feel like they are not alone.  And maybe, just maybe, becoming an inspiration to someone who is just beginning the process (you know, later on down the road).  Ultimately, though, blogging about my life really is a chance for me  to express myself, right?  I have just one caveat before I go ahead and jump on in with both feet...you should know that I am Very  Grateful  that my symptoms are not nearly as bad as they could be.  I know that there are many more people in the world who are less  fortunate than me.  I can only hope that my disease doesn't progress to the levels that I have seen it could eventually be.  But in the meantime, I am thankful that, despite all of my issues, it is not worse.

So, here's your very last chance to bail on reading this post if you aren't up for listening to a lot of whining and complaining...it's just something really need to do right now...have a little pity party for myself so that I can get the whining out of my system and focus more on what I need to do to stay as healthy as I can for my family.  So, if you keep on reading, don't say I didn't warn  you!

How about I start this off as a top 10 list of my most annoying symptoms?  That's sounds good to me ...

1.  I am soooooo tired. All.The.Time!  Like sleepy tired...you know that feeling when your eyes start to sting because you're super  tired?  That's how I feel.  Always.  Even if I get a good night's sleep, or nap, or rest.  I am tired...and not like mom  tired.  Just through and through tired.

2.  I'm exhausted.  I know that sounds an awful lot like number one, but I am referring to a different kind of tiredness now...the one that exists deep in my muscles.  It sorta feels like I have spent hours at the gym lifting very heavy weights...and a lot of times there is a soreness there, too, as if I really did  lift weights!  Thank goodness the boys can walk a lot now, because the exhaustion in my muscles makes it very difficult to carry them much at all anymore.  But this exhaustion effects absolutely everything  I do throughout my entire  day.  So if anyone I know sees me and thinks I look miserable, it's probably just that I'm tired and exhausted...please don't take it personally! ;)

3.  I ache.  Like bone ache.  My hands, my right pinky finger, my wrists, my arms, my right elbow, my legs, my knees, my hips, my neck, my back, and I am sure some other part of me that I am forgetting.  I feel like I am 80 years old!  Can somebody hand me my walker, please??  Now, I do feel a little better once my body gets up and moving, like after a little exercise or something...but then I am tired and exhausted again.  I am really going to have to learn to find balance in my life to help with this.

4.  My stomach is a mess.  I often feel like I am going to spew chunks (sorry to any of my visual friends, followers).  And if it's not coming out one end, it's the other!  Again, I apologize.  But it's real .  Too, I am frequently gassy, bloated, and/or constipated, just to tie it all up in a neat little package...with a giant purple bow (because that's my favorite)!  But, pretty much, my stomach rarely feels "right" anymore.

5.  My hands and feet are frozen icicles hanging off logs.  And it is sooooooo hard to warm them up if they get cold!  I have to be very proactive with this one!  Because once they're cold, forget  it !  I might as well stick them in an ice bath and tell them that misery loves company!

6.  I am having a hard time swallowing.  This is one of the weird symptoms I was vaguely aware that I was experiencing, but I didn't realize it was actually a symptom of anything , until the doc told me about it.  And now that I am paying more attention to it, it is a bit annoying.

7.  Another one:  I have difficulty taking deep breaths.  It hurts my lungs.  I was aware of this symptom before seeing the scleroderma specialist, but as with the swallowing, I had no  idea  that it was connected.  I just assumed  it was because I was out of shape.  But now, I am worried about it.  I am anxious to go for my pulmonary function test next week to see if I have any scar tissue on my lungs.  *Wish me luck*!

8.  Acid reflux...something I have only had a few times in my life...except when I was preggo with those beautiful boys of mine!  While I was pregnant with the twins, I had the  worst  heartburn of my life!  And when it continued post-delivery, I was sure  it had something to do with the pregnancy hormones still hanging around in my body?!?!  I guess not!  Fortunately, I don't have it very  often...but I have had it in the middle of the night, to the point of vomiting, and that stinks !

9.  Swollen glands and low-grade fevers are pretty much a weekly occurrence.  What a pain in the neck!  Literally!  LOL

10.  My skin is itchy.  With scleroderma, you usually get patches of thicker, itchy skin on different parts of your body.  And so far, I am very fortunate, in that I have very few of these patches.  However, my skin is frequently itchy all over...and that makes me start thinking of chicken pox...and head lice...and scabies...and other creepy, itchy things, and it makes me even more  itchy! 

Okay, that's a pretty big laundry list of my physical complaints.  Just a few more complaints...but these are more of an emotional nature.  I think I'd like to do another list...but let's stick to, let's say, maybe my top five  complaints for this one.  That way I don't bore you to death with my whining.

1.  I am frustrated that I have to now deal with my own health issues.  I have all I can handle, trying to deal with Miracle Man's health/learning concerns and raising my other 2 children, plus taking care of the dog, the cats, the house, my husband, etc.  I don't have the time  to be dealing with my own health issues.  And I don't feel  like running to doctor's appointments for myself, on top of all of the appointments for Miracle Man and my other two lovelies.  I don't wanna do it and you can't make me!  (Ooops, sorry...flashback from childhood!)

2.  I don't want this to be my body now.  I want to run.  Marathons.  Many, many  Marathons.  I wanted to be able to run one in every state by the time I eventually retired from running.  I even wanted to run a few internationally.  And I don't want to feel like I am 80 years old when I have so much life left and so much to experience as a mom.  I don't want to feel like a slug at all.  I want to play hardcore with my kiddles.  Was this an invasion  of the body snatchers?

3.  Even though this diagnosis is all so new to me, I already feel so alone in this disease.  I don't know anybody with scleroderma.  And whenever you tell someone that you have something that they cannot visually see, they often don't "get it".  It makes me feel...so.very.isolated...already .  Nobody seems to understand.  Even though people are caring and compassionate, they still don't really get it, because they haven't experienced it.  I feel like some people think I am just whiny and that I should just "suck it up", but it's not  simply a matter of just "sucking it up".  I wish it were that simple.  I wish I could just "make up my mind" to feel better .  That would make EVERYTHING so much easier!

4. I find myself to be...annoying.  That's strange, isn't it?  But it's true .  Sometimes, I just get so cranky and miserable and I am totally annoyed with myself for it, but I have a hard time changing  my mood.  I have found, though, that if  I can be silly with the kids, or listen to some music, it sometimes helps.  Just not always . And I don't want  to be stuck in those kinds of moods.

5.  Sitting/resting makes me feel lazy.  I don't like it.  I never have.  I have always been on-the-go...since...ummmm...forever .  I think that's why I am enjoying blogging so very much lately.  Because it makes me feel like I am actually accomplishing  something (other than keeping the couch warm), in between taking care of the kids.  And it   bugs.the.heck.out.of.me   to think that other  people  might think that I am just being lazy.  I mean, it really drives me BoNkErS!  And it shouldn't  matter what other people think.  But we live in a work, work, work culture, and I know have a hard time with it, just for myself.  So, I am sure there are many people who already think this or will think this of me.  And that feels terrible to me.

Well, that's it. For now.  As I said above, I promise I won't do this often.  I am glad I was able to get this off my chest.  And I am going to work hard to stay positive and focus on maintaining my health and taking care of my family as best I can.  Thank you to those of you who actually read this post all the way down to here!

That's all folks,

P.S.  Feel free to leave a comment for me below...just be gentle, please.  I'm feeling a little bit fragile emotionally right now.  Thanks!  ;)


  1. I know how hard it is to be a twin momma, I can't imagine how much harder it is when you throw in everyone's health issues.
    You amaze me with the energy you have and all the things you do!
    I hope you are able to find some relief soon.

    1. Thank you, MeliD! I appreciate that! I hope so, too! :)


Follow by Email