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Category: Fybromyalgia

Being okay with just okay

Being okay with just okay

Today was a day where I could only do the bare minimum. The bare minimum is okay. Just being okay is sometimes the best I can do.

Oh, I don’t like it but I don’t like it because I’ve always worried about the judgement of other people. Well, here’s the truth; even if I try to hide it, I’m not myself and those who really know me see through it. Some will stay and some will go. I need to be okay will that. My autoimmune diseases and chronic illnesses will always be a part of me. I’m in acceptance mode with that. Some friends will get on board. Some won’t. I’ve officially passed that choice and/or burden onto them.

I’m okay with sometimes just being okay. If all I do is get up, brush my teeth, and put on leggings and a top, that’s okay. There is freedom in letting go of caring about the judgement of others. No pretending anymore. No pressure. It’s being okay with just being okay.

This is the life I was given and I’m doing the best I can with what I have. And that’s okay.

 

Let’s talk about Chronic Jenn

Let’s talk about Chronic Jenn

(Warning: This just may be the most boring post you’ll ever read from me. I just wanted to educate y’all before we move forward.)

One of the things that is going to change around here is the fact that my “babies” are grown up. I have a 20-something, a just about to be 20, and a high schooler. So, my days as a momblogger are fading. Their stories are theirs to tell. I’ll still share some of our family fun because, well, we aren’t the normal family. We are loud, sarcastic, (at times) inappropriate, and we have one helluva good time. There is too much fun to not share those family times.

However, when it comes to my stories, you’re going to hear more about my medical conditions. It’s not that I want to whine or gain symathy. I have a dog for that. You should just understand that every day, all day, every hour, every minute, I am effected by one or more of my chronic illnesses or syndromes or nasty little devils that make my life a living hell most days.

Pain

I won’t list everything I have going on because that will be the most boring post EVER. But the big three – or as I like to call them – the mighty triad that wants to kill me or least make me suffer. I really need a meaner sounding name for them, come to think of it.

Anyway, the chronic issues I am dealing with are:

Chronic daily headaches & chronic migraines (and their good friend cluster headaches). And yes that does mean every single day I have a headache at or above a pain level of 5 or above. That is a good day. I also have a minimum of 12 migraines a month. A good month. Those are just examples. It can be worse. It is rarely better unless I have been in the hospital and they have medicated it down to a zero pain level. That usually takes about 9 days of nonstop IVs.

Fibrmyalgia is along for the ride. I don’t even know how to explain all of what fybromyalgia does. But I can share what I go through with this.

  • Chronic muscle pain or spasms (like having the flu all the time, 24/7)
  • Severe fatigue (Again like the flu. You need a nap after a shower.)
  • Insomia (which is a bitch seeing as you are so fatigued but sleep is not going to happen)
  • Your body feels all kinds of stiff when you first wake up. (Feel like I’m Rice Krispies with the snap, crackle, and pops going on.)
  • The awful “fibro fog” where I have retention of Dory from finding Nemo (Feel free to call me Dory. Seriously, my retention is horrible a lot of the time.)
  • Migraines (YIPPEE) and tension headaches. (YAY)
  • Feeling anxious  (Me? Yep!) or depressed (Duh)
  • Tingling in the face, arms, hands, legs, or feet (Too often to count. Like the pins & needles when your foot goes to sleep)
  • Exercise kicks my ass (even more than before)
  • (And the one no one talks about) GUILT  Seeing as it is an invisible illness, I am always apologizing or feeling guilty if I have to nap or not go out with the family. Guilt sucks.

Now Lupus is the one I know the least about because it scares me the most. I realize that is not the wisest route to go, but that’s me. I am  very aware of the chronic headaches, migraines, and cluster headaches and I do know my fybromyalgia but when it comes to Lupus I can only tell you a few things.

With Lupus, I know my ANA is very high. (Meaning the my good cells are really awesome at kicking my own body’s butt.) What I do know that has shown up:

  • Fatigue (Like with fibro, it is worse than the flu)
  • Fever with no explanation (I wake up every day with one and have one many nights)
  • The butterfly rash on my face (So not a big fan of this)
  • Hair loss (It’s bad enough that I see grey popping in. I don’t need to lose what I have.)
  • Swollen joints (I mean it is seriously hard to put a bra on, people.)
  • Dry mouth & eyes (I literally never leave home without a water bottle and eye drops.)
  • Kidney issues (This is also a side effect of all of my meds. Need the meds, need the kidneys.)
  • Gastro issues- (Like reflux so bad it is burning my vocal cords and changing my voice)

So, there you have it. That is a day in the life of Chronic Jenn. Anyone want to switch? Nah! There is no one I would ever wish this upon. I take it upon myself before I’d ever wish it on someone else. I’ve got this. I’m kind of a badass now.