Few Tears Today

I made it through most of the day without a tear. I didn't cry from pain today, but I cried while watching Whitney Houston's funeral service. Strange how I went back to my youth while I watched her music videos, listened to her beautiful voice and heard her friends/family tell stories of her life.

She made an impact on so many people. Did she ever know how many people she touched with her voice? I wish I could make that kind of impact on others. Maybe help someone else dealing with Fibromyalgia, Lupus or one of the many other illnesses I have. I hurt bad at times, but there are people far worse off than I am. I should be counting my blessings every hour.

I was able to visit with my parents today. They live very close to me, but I rarely go out of the house anymore...unless it's absolutely necessary. (Doctor appointments...etc.) I have no energy. But, the days I do have energy and DO get out or DO work hard here at home, I pay for it for several days. You'd think I'd learn to do things in moderation....BUT...that's just me.

A new friend posted on my wall today..."I have Lupus, but it doesn't have ME!" I need to make that my theme. Thanks for reading. It's 4:30 a.m. now....perhaps I should go to bed.

Til next time,
k.

Venting a sec...

Ok, I need a venting session - So...last night was one of my worst pain nights EVER. In tears, wrapped up in my heated throw...you get it. Hubby wanted to take me to ER last night, but I tried to tough it out with my "strong" Tramadol meds. (phht!) Anyway, this morning I call my rheumatologist to see if he would call in some pain patches to help with joint and muscle pain. About a half hour ago, the nurse calls me back and said, "The doctor doesn't think opiates will be of any use to you." I said, "I didn't ask for opiates, just pain patches for the extremely bad places." The nurse says, "Well, those pain patches have opiate drugs in them and he doesn't feel they'd benefit you." I'm on the phone trying not to cry and ask, "what am I supposed to do for this?" Well, the nurse is goint to try to "speed up" my Benlysta stuff and TRY to get me in before my 6-week out appointment. You'd think my rheumy would understand this pain. My neurologist is the one that allowed Tramadol for me. GEEZ! Last time I went to the ER they treated me as if I were a druggie just looking for a 'high.' I don't understand this. Would they want to be in this pain? Would they allow their wife, sister or mother to suffer???? I am so upset, pain is starting again. What a vicious cycle!!!!!!!!!!!!!!!!

A Partial Butterfly

It's closing in on 4:30 a.m. I'm in tremendous pain and can't get comfortable enough to rest, let alone sleep. My Rheumatologist doesn't want me taking "pain pills" because Lupus will get worse (it is right now) and THEN, what will I do for pain??? I see his point, but I promise I am no drug addict. It took me three months to use 10, yes TEN, pain tablets he did prescribe me. This would be a night/morning that I would have needed a number 11. Bad is bad...it's intense and nothing I do will ease it off.

Lupus is ugly. It's mean and unforgiving.Over the last few weeks I've noticed how red and irritated my nose seems. I realized after reading more on Lupus that although I don't have full "butterfly" or malar rash on my cheeks and nose...some people just have it on the nose. I guess I'll look like Rudolph the Red-nosed Lupie from her on out. It's part of this illness. It's part of me now.

I've cried a lot today. I look at handfulls of hair that come out when I brush my hair and think, "well, it's only going to get worse from here on out." So I cry. I look at the tremendous amount of weight I've gained thanks in part to prednisone and plaquenil...and I cry. I look in the mirror and hate what I see... again, I cry. I'm not really crying "feeling sorry" for myself as much as I cry for the woman I once was. She's gone forever....

I cry more


and more



and more...................

Chronic Illnesses suck...seriously

Where to start tonight? Words come so easily at times and then there are times like this when they are all jumbled and make no sense. Thing is I have so many things I want to write about. I want to share my pain just in the off chance it could help someone and maybe someone else might understand me a bit better.

At some point I want to write "letters" to my husband, my kiddos, my parents, my siblings and to my friends. I want them to know how special they are to me. Let's face it....the way this disease (Lupus - SLE) is progressing, who knows how long I'll be here. So, that being said, I of course began to get sleepy.

I'll try to write more tomorrow. Can barely hold my head you.

Many blessings,
K.

Scattered Thoughts - My Life Upside Down

Alot of people don't/can't/won't understand me. That is why I am here...on Blogger...hoping to explain some things going on inside of me. Lupus is an unforgiving illness, but I am to be a forgiving recipient although at times it is very difficult.

I want my family - my husband, kids, parents, cousins, friends - to learn about this ugly illness and how it has changed me as a person. Not to sound morbid, but I want my kids to look over these ramblings someday so maybe, just maybe they'll understand a little more about why I did "this" or "that" and why I didn't. One has to be in these shoes to know. One has to feel the physical pain as well as the emotional pain felt my me and my fellow "Lupies." I'm not asking anyone to feel sorry for me, nor am I whining. I just want my story to be heard by people that care about me.

Initially, I was diagnosed with Fibromyalgia around 2006. Then, as my lab work indicated, I was sent to a rheumatologist for suspected RA (rheumatoid arthritis). More tests led them to believe it was more Lupus instead of RA. Now, they say I have all of these things and more...Mixed Connective Tissue Disease would be my latest ailment. It is what it is, right? I'll explain as I blog about each individual syndrome as this blog progresses. I think in order for others to know the real me, they should know about my life and the quality to which I live.

I suppose I should at least introduce myself now. My name is Karen. I'm 43 (until April), married to my best friend - the man that can make me laugh when no one else can even make me smile. I have a son, almost 20, and a daughter, 16. I have two step-sons that feel more like my own (flesh and blood), aged 23 and 19. No wonder I have been stressed lately!

I used to work at a local community college doing a job I LOVED, butas my illness progressed, I was no longer able to work. It was hard to leave, but really I had no choice. I'm not sure how I worked as long as I did. But, as much as I loved the work I did, the stress of some around me ended up causing my 'breakdown.' I think some people were glad to see me leave....but that's another story.

Ok, now that I've started this, I hope and pray I can do this on a regular basis. I need to use this as my haven, my place to vent, and my outlet of things I've kept inside for too long. This will be boring for most people, I supposse, but I'm not doing this for them. It's for my family and for my own sanity. Thanks for reading.

Til next time,
K.