For the Sake of Others

Some days you realize the people around you aren't exactly as put together as they seem. They may smile the brightest and act the happiest, have the prettiest gardens and brag about their grandkids and kids and under it all, they're suffering just as much as you. It's crazy how that works. Why is it, the happiest people seem to have the hardest struggles? This lady, who I'll leave nameless, has been through so much, yet she always has time for others. So even through all her struggles, big and small, and now her chronic pain, somehow she's still encouraging others, enjoying life and finding ways to carry on. And then there's the complete opposite: the person who has everything and is happy with nothing. There is always something wrong, they're always lacking something and wishing for more, and the tiniest aches are debilitating and they just simply can't change anything. Those are the people we need to let go of in life. When you're starting to climb out of your own hole, they're there to make sure you don't quite make it to the top; they don't want to be left in the dark alone.

So, on that note, I'm going to go back to watching Fargo on FX right now. The subtle sarcasm and dry humor in this show has sucked me in from the first episode. The casting just makes it that much better.

"You just do it. You force yourself to get up. You force yourself to put one foot before the other, and God damn it, you refuse to let it get to you. You fight. You cry. You curse. Then you go about your business of living. That's how I've done it. there's no other way." --Elizabeth Taylor

Barre what?

Yogo did me in. But not enough to stop me from attempting something really new - a barre class. Didn't look like a whole except a few plies and squats. The teacher apparently likes to change up her class, so to begin she shouts "glutes and hams today girls, glutes and hams!". That should have been enough warning for me to walk out and maybe go swim instead. But I did not. Now I am sitting here running supper through my head because it's going to take me another ten minutes just to muster up enough strength in my legs to get off the couch and to the kitchen.

Steaks are what's for supper. After this week, I deserve a really good steak topped with mushrooms and onions and maybe some ice cream for dessert. Not just any ice cream, the red velvet cake ice cream. Yep, that's enough to get me off the couch.

Good Ouch?

So I attempted a beginners yoga class last night. The key word there being "beginners". I wasn't too worried as it was a nice, slow moving class that was basically just stretching. Or so I thought. Apparently all that "stretching" is actually working muscles as well because I woke up this morning and had no idea why I was in such a weird, twisted pain. It wasn't the sharp, shooting pains from strains or muscle tears, or even the nagging pains that happen every day, but a deep, tender muscle pain. Wow. I giggle now as I sit here deciding whether to go back or not and do it again. It obviously did something to my body. And it wasn't excruciating and I didn't have to break out an inhaler half way through, nor was it in the water which is the only way I seem to enjoy exercising anymore. So maybe this time I'll try a Pilates class or something similar. Classes are free with the gym membership (which is highway robbery) so I may as well check out a few more.

We'll see if I can move tomorrow or not. Maybe it will rain all day again tomorrow and I can just enjoy a day of napping with the cats. How relaxing would that be?

On the Right Road Left

Coming down off prednisone is almost never a good time for most people. Especially when you're not tapered down. 40 mg twice a day for 20 days and then a sudden stop causes many different reactions in many people. When I'm being treated for a lupus flare up I'm always tapered down, however when it's "just" my asthma, they don't feel the need to taper. Why is that? They're afraid of lupus and not of asthma fighting back?

So, my body hates me at moment. Hurts to touch, hurts when my hubby gives me a hug, which in return makes him hurt and makes me hurt even worse inside. I've resorted to wearing sports bras that are a little big during this transition, although I have to go to work tomorrow so a real bra is going to be necessary and I'm dreading that. I apologize for all the bluntness and probably TMI you'll come to read as this keeps going. I have learned I hate sugar coating things like this, and I gives props to others who can tell it like it as well. "No, it's not too bad, the pain is minimal" gets you nowhere and people start to get annoyed with you're little white lies. Go ahead, if they're your friends and family, they can handle it. If not of course, I don't blame you for keeping it to yourself, some people just can't handle it.

I plan on taking up a beginners yoga class tonight granted I can find something comfy enough to wear. I hear that yoga and pilates helps dramatically with asthma and chronic pain that comes along with lupus and other "illnesses" of which I'm grateful I don't have.

Anyone else have any suggestions on how to make coming off prednisone easier or even dealing with the pain from RA or lupus every day?

No, Shame On You

I went to Wal-Mart to pick up a few things before we left for Easter in the cities with my in-laws the day after my whole incident with the doc you probably read earlier. Just a few things, twizzlers for the road, alka seltzer for the hubby who is now having issues with allergies thanks to this lovely spring weather in ND, and a couple drinks.

I end up in the express lane, shorter lines, smiling old lady at the register, what could possibly add to my crazy awful week. Dumb questions.

The young lady in front of me seemed to have my quick idea, some candy, a sandwich and a drink. Checked out and left. By the time this "nice" old lady started ringing my up the girl in front of me was at the opposite door of Wal-Mart, it's a ways away for those who don't know. The cashier realizes she left her water bottle.

She hands it to me and say "run down there and make sure she gets her bag".
 I look at her and go "no, I'm not running anywhere today, sorry, she'll come back when she misses it"
Cashier: "shame on you, if I was in as good shape as you I'd run it down myself."

Mind you, I would have had no problem on a normal day. But I can barely breathe as it is and I was finally able to leave my own apartment without being in as much pain as the last few days, so no, I'm not "running" anyone down.

Shame on me. Really? I'll take the compliment I look like I'm in good shape. But everyone who knows me well enough can look at me and know I'm struggling this week. So no, not shame on me. Shame on you for being to rude to someone who know nothing about. I will avoid this lady at all costs from here on out. And if I hadn't been taken aback by someone so rude ringing up my candy and water bottles I may have gotten a name. But then, maybe she was having a bad day as well. We all fight our own battles. So before you say shame on anyone for something like that, just smile and don't. It's not worth it. I didn't need that after the week I've had and it was about a breaking point for me. Doctors who don't listen and cashiers who don't care and put you down for something you physically can't do. Please be nice to someone this week. You have no idea what they're going through, even if they have a huge smile one their face.

Frustrating Times with Someone You Should Trust

I was always told not to write/call/yell while you're still upset. I don't think I'm completely over it yet, but it has been a few days since this happened, and I can't be the only one who has gone through this.

I hate going to the doctors. I've spent way more time there then anyone should ever have to. So when I call to make an appointment, I expect to get an appointment. This, however, is what happened:

Receptionist: Hi, this is "...", how can I help?
Me: I need to get an appointment this morning or at the latest this afternoon.
R: Ok, what do you need to be seen for?
M: I've been having issues with my asthma for a couple days and can't get it back under control.
R: Well, it looks like your primary has left us, I can't get you an appointment until you can come in and meet a new primary so they can go over your chronic illness before you can get an appointment.
M: OK, can I do that today?
R: No, I can't do that until Monday.
M: OK, so I can't wait that long, I need to be seen today.
R: Well, maybe you should head to the ER or Walk In clinic and if you would figure out a primary so this doesn't happen again that would be better.
M: Wow, thanks. OK. I guess that's what I'll have to do. *click*

Seriously!? I just wanted an appointment. Do you realize how much more an ER visit is?!?!

So, I suck it up and go to the walk in clinic. Which I have visited once before and the doc there was amazing, so I had high hopes. I walk in, it wasn't busy, maybe 2-3 people in the waiting room. I get called back in about 10 mins and wait hardly 5 for the "doc" to come in.

First impression: I should have gone to the ER.

She was a middle age woman, not a young thing, not so old she scared me. However, she looked at me and said, "Oh, so you have a cold?"

M: Yes, a cold... I actually can't breathe and have been having issues for a few days.
      Yes, I have a nebulizer at home and have used that but it doesn't last more then an hour.
D: and your allergies? they acting up? (did you hear my mention of asthma and not breathing?)
M: Yes, for a couple days now and they went from clear to yellow goop (TMI, I know!)
D: Well, I like to tell my patients to suck it up for 10-12 days and hope this runs it's course
M: I don't have 10-12 days, I can't breathe now
D: Well, let's have a listen ---- I don't hear any wheezing so you're obviously breathing
      (My 02 was 93-94...!)
M: I'm tight, my back hurts, I cough - I know when I can't breathe, I've had this for almost 30 years, I know my body!
D: Well, I'll give you some prednisone - but only take it if you need it, and some antibiotics for your "COLD"
     (she did the air quotes every time she said "COLD" to me! Air Quotes! What kind of a doctor
     does that?! I wanted to just punch something!)
     oh, and how about some cough syrup with codeine so maybe you'll calm down and we can get your heart rate down
 (which I'm sure by this time has gone up even higher from when the nurse took it at the beginning!)
M: Great, thanks a lot.
D: Oh, and you have Lupus as well as asthma?
M: yep
D: OK, stop by the desk on the way out.

And that's one more reason I hate walk in clinics. It's more like cattle being pushed through a line and drugged up. They don't care what's wrong, as long as you don't die and they don't have to deal with you any longer then 10 minutes or so.

Is it just me that deals with this? I am sorry I don't have a primary, but she had literally just left the area and I hadn't even been informed of her departure yet, so how was I to know? So now, I get to set up a fun "meet and greet" with a new doctor and pay for a visit just so he/she can get to know me and my "chronic illnesses" so the next time I need an appointment I can actually see a real doctor who may actually care and listen to me. Fun times.

Just Beginning

I've had blogs before, I just never seem to keep up with them. Lately, however, I have all these experiences I want to share with everyone and nowhere to post them so I can remind myself how far I've come. So here we go again. This is just going to be a place where I can share my random life struggles and victories to remind myself, and maybe even one or two more people, that days do get better while dealing with invisible diseases. One day things will change, but we will all get a little stronger with each passing day that we struggle through. I hope I am able to keep up with this one, so if anyone does read this or ever has anything they want to share feel free! I love hearing from others, normal or not so normal.