Wednesday, July 15, 2009

How do I keep finding myself here again & again?

My legs & arms are covered in bruises. Every time I think I can ride out the pain & not do this to myself again, it happens AGAIN.


Bruising easily is part of Lupus. I've had that symptom for as long as I can remember & probably before. Nerve pain is also part of Lupus.

Put the two together & once I push on a spot that is hurting too much to ignore (acu-pressure style), I get bruises that look like spots. Right now they are ALL over my legs. And my arms. It's NEVER been this bad. It makes me sick to look at the bruises honestly :(

I'm pretty sure my current rheumatologist is an idiot. I don't think she's a bad person or anything, but taking me off pain medications & expecting me to be a contributing member or society is just not going to happen. "Take Tylenol Arthritis. Being on pain medications at your age is too risky."

How did my age become a factor in this??? Has anyone else been fed this bullshit???

I'm finding it's one or the other. Either I take pain medications & can get up & do the things that needed to be done days ago, or I don't take them & I make myself look like a bruised up leopard & can't do shit.

My hands wouldn't work well enough to type for a few days. That's why you haven't heard from me on here. They have been drawn up in pain & arthritic deep aching. The same aching pain I feel from head to toe. I swear sometimes it hurts so deep that it feels like my bones are rotting.

Someone tell me how to get past this. Tell me how to DEAL. How to FUNCTION. How to FREE myself of this pain...

And if you can't do that, tell me my doctor is an idiot. Help me realize I deserve to have my pain level managed using medications & that it's OKAY to do so. She sure has gotten me on every other medication she can get kickbacks from. What's so wrong about pain meds? I just don't understand why this has to be such a FIGHT & why I should have to feel GUILTY for wanting medications to help.

I'm just SO tired.

Tuesday, July 7, 2009

Sad but true...

My copy of The Lupus Book arrived today. I'm already flipping through & starting to read it. I'll make an update of the things worth sharing, but already it seems like something everyone with Lupus should have!

Also, today I don't have the energy to take a shower. Seriously. I feel weird & unfocused & dizzy & weak. Did I mention they are tapering me off my predisone? I thought I hated steroids, but coming off them SUCKS even worse & I'm thinking I felt better BEFORE. Uggh. I'm ready to have a doctor who knows about Lupus. Specializes in it. Eats, sleeps & breathes it & can make me feel better & make my life easier & who doesn't jerk me around.

I have an appiontment with a new rheumatologist in Atlanta at the end of August that I think may finally be this doctor. But man, waiting months @ a time to get in with a doctor is total crap. Don't you agree? It made me SO mad when I first started going through this all. But I've found since then that the good doctors are worth waiting for. Usually.

I have already heard this doctor speak before & she was fabulous & I learned so much. So I called & made an appointment as a new patient the very next office day. Hopefully The Lupus Book can get me through until I see her & help me know what to talk to her about & what the important things to mention are.

Well, I'm going to get out the apartment for a bit. I'm feeling a bit of cabin fever. So yes, I will leave the house unshowered. It's either shower or get out of the house. My spoons are running low today & I choose to use them to go visit a friend & her daughter :)

Sunday, July 5, 2009

Thunder storms...

Whenever it rains & rains, I hurt more & more. Aches all the way to the bone. Uggh, make it stop.

Thursday, July 2, 2009

The Lupus Book

I just ordered this from Amazon. I heard about it at the New Patients Seminar I went to about a month ago in Atlanta held by the Lupus Foundation of America. They keynote speaker was the one who said everyone with Lupus should have this book & that it is the Lupus Bible.

I'm sure I'll let y'all know what I think as I read through it once I get it. But if you have Lupus, you should get one too!

Talk about a bad way to start a day...

You shouldn't even really call it the start of a day when a headache awakes you at 4am should you? This used to be something that happened to me quite often just a few months back, but until this morning it hadn't happened in a quite a while. I guess I was overdue?

It's 11:30 now & I am finally able to slightly concentrate enough to write this. It felt like my entire skull was covered in a web of extremely painful frayed nerves. Digging my fingers in & massaging until I found the trigger points that hurt so badly & taking pain medication until I could finally fall back to sleep could only put a dent in the pain. Sleep is elusive & much desired when I get these headaches as it's the only thing that helps. I have to sleep away the pain. That's just how it goes.

Then I'm left with a foggy brain & half my day is gone before I've even started it. Nobody ever said having Lupus was fun, but does it really have to include these terrible headaches? Not to mention when they happen I get scared. It's scary that you are never really "in the clear" with Lupus. It's always lurking.

Six months ago I had a period of "irretractable headaches" occur (meaning they didn't go away for days @ a time). It was literally using up every last ounce of strength I had. A few doctors diagnosed me as having "pseudo tumor cerebri". Which means you have all the signs & symptoms of a brain tumor, but no brain tumor. I mean obviously I was glad to find out I didn't have one after all, but that whole ordeal is a scare I'll never forget.

I was @ the eye doctor because I thought I needed glasses because of all the weird things going on with my vision (that I had mentioned to all the doctors I had @ this point & they had done nothing about mind you - so I didn't think it was anything to worry about right?) . Well, during my appointment I came to realize very fast that seeing double was NOT normal. And that my vision going out in the shower like it had the other day was DEFINITELY not normal.

Well, DUH! You think?

But nobody had listened to me - the patient. I mean, why would you want to listen to the patient? They don't know anything about their own bodies! The way I was treated made me feel CRAZY & I even started doubting myself. This is not a good feeling to have when the next thing you know the optomotrist is calling the hospital and telling them they are sending you straight there to get a brain scan. Apparantly both of my optic nerves were very swollen (they actually still are - but it decreases & increases every time they take new pictures of the inside of my eye) & that this was cause for alarm.

That was scary. I've never been so scared in my life honesty. And my eyes were dilated as we left the eye doctor so the entire experience of being rushed back through the ER & into the freezing cold room where they did the scans was literally a blur. It all seems like a bad dream now honestly. The only thing I remember semi-clearly is being wheeled into the CT scan room & there being a huge rainbow sticker on the front of the machine. Before too long the ER doc on duty came in & said "Well, it's not a brain tumor!" I swear I had to stifle the urge not to say it like Swartzeneger.

I mean, where can you go but up from there, though???

And the positive thing to come out of all of that was having doctors finally take me seriously & realize SOMETHING was TRUELY wrong. It's sad that had to happen for me to be taken seriously, though.

Over the next month I was shuffled in & out of every type of doctor's office you can imagine, recommended for surgeries I chose not to have (more on that later), had more vials of blood drawn than should be legal & was stamped with a Lupus diagnosis.

It wasn't all that simple, but I'll save more for later. My hands are growing tired & achy & my mind is getting foggy. It's time to rest them both for a while.

A link for the caregivers among us...

Being diagnosed with Lupus could have been much worse without the patience & love of my personal advocate & husband Chris. I know it can be exhausting & tough to keep a good attitude when you can't make our pain go away, but just being there helps our emotional pain subside :) This link is for all the caregivers out there. Along with a BIG thank you, too :)