Every Autumn since I was diagnosed with Lupus, I have suffered from at least one bout of bronchitis, so when Autumn came and went with no undue respiratory distress, I thought: Hey Girl, you got away clean! But then. Winter comes in and on Christmas Day ugly things began to happen.
Fast forward to today, two months later, and I am finally coming out of the Bronchitis From Hell, with the assistance of three rounds of antibiotics and a round of corticosteroids. But. I am now contending with Pleurisy, which is a bronchial condition common among those with Lupus.
I have been confined to my home except to go to doctor visits, and each time I left my house, I felt like I'd been let out of prison! Orange Is The New Black Reloaded, that was me! If I'd had my six-gun, I would've been shooting and disturbing the peace until Marshal Dillon rode up to haul my sweet *ss to jail.
I am once again feeling like a human bean, thank the good Lord because one can only lie around the house watching movies and reading for just so long, when it's not by choice. I had to lie/sit around because I had absolutely no energy due to the bronchitis causing the Lupus to rear her head and bare her fangs, then run rampant telling my immune system to attack every single cell in sight, not just the malevolent, foreign ones. Most of you know your immune systems to be your friends. In a person with Lupus, the immune system is the enemy.
I fully intend to be out and among the rest of the human race in a few days, so if you have any kind of anything, or if you even think that you might be getting something, please don't even look in my direction. Let me enjoy freedom again, PLEASE!
Showing posts with label LUPUS. Show all posts
Showing posts with label LUPUS. Show all posts
Thursday, February 26, 2015
Monday, November 3, 2014
If I Had My Life to Live Over by Erma Bombeck
(written after she found out that she was dying from cancer)
I would have gone to bed when I was sick instead of pretending the earth would go into a holding pattern if I weren't there for the day.
I would have burned the pink candle sculpted like a rose before it melted in storage.
I would have talked less and listened more.
I would have invited friends over to dinner even if the carpet was stained, or the sofa faded.
I would have eaten the popcorn in the "good" living room and worried less about the dirt when someone wanted to light a fire in the fireplace.
I would have taken the time to listen to my grandfather ramble about his youth.
I would have shared more of the responsibility carried by my husband.
I would never have insisted the car windows be rolled up on a summer day because my hair had just been teased and sprayed.
I would have sat on the lawn with my grass stains.
I would have cried and laughed less while watching television and more while watching life.
I would never have bought anything just because it was practical, wouldn't show soil, or was guaranteed to last a lifetime.
Instead of wishing away nine months of pregnancy, I'd have cherished every moment and realized that the wonderment growing inside me was the only chance in life to assist God in a miracle.
When my kids kissed me impetuously, I would never have said, "Later. Now go get washed up for dinner." There would have been more "I love yous" and more "I'm sorrys."
But mostly, given another shot at life, I would seize every minute, look at it and really see it, live it, and never give it back. STOP SWEATING THE SMALL STUFF!!
Don't worry about who doesn't like you, who has more, or who's dong what. Instead, let's cherish the relationships we have with those who do love us.
I would have gone to bed when I was sick instead of pretending the earth would go into a holding pattern if I weren't there for the day.
I would have burned the pink candle sculpted like a rose before it melted in storage.
I would have talked less and listened more.
I would have invited friends over to dinner even if the carpet was stained, or the sofa faded.
I would have eaten the popcorn in the "good" living room and worried less about the dirt when someone wanted to light a fire in the fireplace.
I would have taken the time to listen to my grandfather ramble about his youth.
I would have shared more of the responsibility carried by my husband.
I would never have insisted the car windows be rolled up on a summer day because my hair had just been teased and sprayed.
I would have sat on the lawn with my grass stains.
I would have cried and laughed less while watching television and more while watching life.
I would never have bought anything just because it was practical, wouldn't show soil, or was guaranteed to last a lifetime.
Instead of wishing away nine months of pregnancy, I'd have cherished every moment and realized that the wonderment growing inside me was the only chance in life to assist God in a miracle.
When my kids kissed me impetuously, I would never have said, "Later. Now go get washed up for dinner." There would have been more "I love yous" and more "I'm sorrys."
But mostly, given another shot at life, I would seize every minute, look at it and really see it, live it, and never give it back. STOP SWEATING THE SMALL STUFF!!
Don't worry about who doesn't like you, who has more, or who's dong what. Instead, let's cherish the relationships we have with those who do love us.
Points to Ponder About Yourself
* There are at least two people in the world that you would die for.
* At least 15 people in the world love you in some way.
* The only reason anyone would ever hate you is because they want to be just like you.
* A smile from you can bring happiness to anyone even if they don't like you.
* Every night SOMEONE thinks about you before they go to sleep.
* You mean the world to someone.
* You are special and unique.
* Someone whom you don't even know exists loves you
* When you make the biggest mistake ever, something good comes from it.
* When you think the world has turned its back on you, take nother look.
* Always remember the compliments you received, forget about the rude remarks.
* At least 15 people in the world love you in some way.
* The only reason anyone would ever hate you is because they want to be just like you.
* A smile from you can bring happiness to anyone even if they don't like you.
* Every night SOMEONE thinks about you before they go to sleep.
* You mean the world to someone.
* You are special and unique.
* Someone whom you don't even know exists loves you
* When you make the biggest mistake ever, something good comes from it.
* When you think the world has turned its back on you, take nother look.
* Always remember the compliments you received, forget about the rude remarks.
Friday, October 17, 2014
An Attitude of Gratitude
Hello Friends. It's another suck-y day in the part of my world that is Lupus, but as I stumbled about in my backyard getting some fresh air...yes, I said stumbled, because sometimes my balance is affected because of a bit of brain inflammation (it's called cerebritis); and when that is going on, it's safer to remain inside of the fence while I inhale the fresh air and enjoy the flowers that are still blooming even though it's the middle of October (yay!).
Anyway, I sat down (actually, sorta fell down) on the deck bench and was about to break into the ugly cry (y'all know what I'm talkin' about!) because I was thinking how terrible it was that I was imprisoned in the backyard and not able to take a nice stroll through my beautiful neighborhood.
Then I had a Full Stop moment because it hit me how very fortunate I am that I can easily breathe in the fresh air and my eyes can revel in the colorful flowers and the varied greens of the trees and bushes. There are people who are unable to walk (even if it's a stumble) around in their yard; people who don't even have a nice yard to enjoy. And though my eyesight is not always crystal clear, it's a temporary thing that eventually passes, but there are those who are permanently in the dark or moving through a world that is a total blur. If I could give this Lupus back to from whence it came, I would do so in a New York minute, but I'm going to try very hard to remember that my life is in many ways so much better than those of far too many others in the world. When I find that I'm feeling sorry for myself because I've had to cancel my USO volunteer shift yet again due to Ms. Lupus deciding to be the boss of me that day or week, I will give myself permission to have a very short pity party, then put on my big girl knickers and accomplish whatever it is that I can do at that particular time, even though it's only catching up with the DVR recordings of the television programs, "Scandal" or "How To Get Away With Murder." We can put the older seasons of "Criminal Minds" in the queue, too, but this Season 10 is a big thumbs down, so far.
Anyhoo, there is always going to be something that isn't going to plan for each of us at one time or another, but we can choose to take stock and see what is going well and focus on that. There is usually more to smile about than there is to cry about. We just don't focus enough attention on those things that are the everyday, and intentionally acknowledge that they are worth being grateful for.
Challenge yourself to count your blessings rather than what you consider to be your curses, and I'll bet you'll be surprised that the former far outnumber the latter.
Thanks for hanging out with me for a few minutes, and I hope that you enjoy the heck out of your weekend!
Be well and stay fabulous!
Thursday, October 9, 2014
Sickness Sucks/Same Old Song
It's a brand new day, but it's the same ol' body with the same ol' pain, courtesy of Lupus stalking my body like a hungry lion, or a ravenous sharp toothed wolf for whom this cruel disease is named. So it's another day of watching crime shows, "Criminal Minds," and "Stalker" being my current favorites. Oh, almost forgot "Mysteries of Laura." Thank goodness for good television programming. Then, when I really want to get all dark and twisty, I pull up "Luther" on Amazon Prime.
Spent part of last evening emailing five national newspapers with a plea-blurb re Lupus awareness and the need for funding research. We need to develop medications geared specifically for Lupus. Of all the medications prescribed for Lupus, only one (Benlysta) was actually developed for Lupus, and some insurance companies won't even cover it! It has also been discovered that Benlysta doesn't seem to be effective in people of color, so clinical trials are being held, but not in nearly enough locations. Just for your edification, the medications currently used for Lupus are ones developed for other diseases and are often ineffective or just barely effective, with horrible side effects, but we keep taking them because we Lupies are an ever optimistic lot. The vast majority of Lupus patients are female. Do we have a bit of sexism going on here? Many of us truly believe that if such a devastating disease was striking men down, no devil in hell with all of his minions could have kept development of Lupus-specific medicines and a laser focused search for a cure from happening.
I have to go now, but in the immortal words of the Terminator, "I'll be back." By the by, I've run out of Deathwish coffee and the Starbucks just ain't cuttin' it today. Gonna try some Chai Latte, just for something different. Hopefully, it might do something good. Send me a few good vibes, won't you?
Be well and stay fabulous!
Wednesday, October 1, 2014
Can a Little Twerk Fight a Lupus Flare?
So. Today, I am relying on my "Go To," which is music and dancing. I am a total freak over www.rhapsody.com and have created some playlists that get me in the groove and past the dark and twisty place. I might have trouble walking in a straight line or driving my car without crashing into a tree (yes, I actually did that), but my music can take me to a place where Lupus is far in the background of my life, and my body exists and moves in its own Dance Galaxy. Isn't that exciting and amazing?! Now I can't see myself when I'm in my Dance Galaxy, so don't know if I look like a puppet from one of Stephen King's imaginings, but it makes me happy, so I'm gonna keep doing it for as long as I can. It's nice to have a place to go when the world looks so very bleak. So for today, let's dance! Twerk, Monkey, ShingaLing, Krump, Mashed Potatoes, whatever floats your boat. Just do what makes you feel good.
My very favorites right now: Return of the Mack by Mark Morrison *****
Jump by Carmen Ejogo
Stay With Me by Sam Smith
Wanna Be on Your Mind by Valerie June
Cleo's Back by Jr. Walker and the Allstars
Let's Dance by Chris Montez
Groovin' by The Young Rascals
As you know, I cannot dance on and on physically, but in my head, my energy is completely limitless and I can dance on into infinity. Glorious!
You are invited...the dance floor is ready and waiting!
Go well, and stay fabulous!
Tuesday, September 30, 2014
Doing Lupus
Lupus is such a versatile disease and it is great to read and learn about those who are living "normal" lives; but I can't help but feel that somehow the rest of us (so very many) will be forgotten or our struggles glossed over because of the mentality that says, "Look, she/he is able to do __________ and she/he has Lupus." I'm concerned that the subtext to that thought is, "...so maybe it's not that bad."
It is that bad. When you must choose which one or two activities you will perform, and one of those activities is only driving a few miles, getting out of the car to go in and pick up a prescription, then driving back home while you still have the strength to do so, what we are dealing with is that bad. That was my yesterday. I visited my mom in the nursing home for an hour, then went to the pharmacy and drove back home, and that was it for me because I had to rest up in order to be able to prepare dinner. My recovery time was about three hours; and forget about the washing up after eating dinner. Oh, I forgot to include showering and getting dressed before I left the house. Many days, showering and getting dressed is all that can be managed and we spend the day clean, smelling and looking good, but unable to expend any further energy. And that only addresses the Toxic Fatigue (thanks to my sister Purple Lady, Malissa for the term), not the 24/7 Ball of Pain that we happen to also be. My neurologist and I discussed the fact that when referring to a pain scale of 1-10, most people cannot relate to the fact that an "8" is normal for me and doesn't have me clawing the walls and screaming invectives at the Goddess of the Universe. I would be disingenuous, however, if I did not admit that at times I do shed tears, sob even, not only because of the physical pain, but at the emotional pain of sheer frustration that I must live like this.
The latest in my saga is that my medication has begun to erode my vision. Well, that's just dandy, isn't it? None of the medications that we take are side-effect free, but this one has relatively low-level side-effects -- except for that pesky seeing thing -- and has the added benefit of protecting against clotting problems; and the clotting problem is an additional issue that is interfering with my Guns. Dang it! Long story short, must needs drop this med in favor of something less desirable. Told my daughter that I'd prefer to stick with this so that I can keep performing at a higher level (subjectively). Her response was, "Uh, Mom, if you can't see, you will not be performing at a higher level because you won't even be able to drive yourself anywhere." I raised a smart young woman, didn't I?
Anyway, the point of this little piece is to remind you that while I cheer for everyone who is fighting the good fight of whatever incurable disease they might be battling and climbing Mount Kilamanjaro in the process, I'm asking you to please also remember those who are fighting just as hard, but are only able to accomplish maybe one-tenth of what that marathoner or Zumba instructor is able to.
Go well, and stay Fabulous!
It is that bad. When you must choose which one or two activities you will perform, and one of those activities is only driving a few miles, getting out of the car to go in and pick up a prescription, then driving back home while you still have the strength to do so, what we are dealing with is that bad. That was my yesterday. I visited my mom in the nursing home for an hour, then went to the pharmacy and drove back home, and that was it for me because I had to rest up in order to be able to prepare dinner. My recovery time was about three hours; and forget about the washing up after eating dinner. Oh, I forgot to include showering and getting dressed before I left the house. Many days, showering and getting dressed is all that can be managed and we spend the day clean, smelling and looking good, but unable to expend any further energy. And that only addresses the Toxic Fatigue (thanks to my sister Purple Lady, Malissa for the term), not the 24/7 Ball of Pain that we happen to also be. My neurologist and I discussed the fact that when referring to a pain scale of 1-10, most people cannot relate to the fact that an "8" is normal for me and doesn't have me clawing the walls and screaming invectives at the Goddess of the Universe. I would be disingenuous, however, if I did not admit that at times I do shed tears, sob even, not only because of the physical pain, but at the emotional pain of sheer frustration that I must live like this.
The latest in my saga is that my medication has begun to erode my vision. Well, that's just dandy, isn't it? None of the medications that we take are side-effect free, but this one has relatively low-level side-effects -- except for that pesky seeing thing -- and has the added benefit of protecting against clotting problems; and the clotting problem is an additional issue that is interfering with my Guns. Dang it! Long story short, must needs drop this med in favor of something less desirable. Told my daughter that I'd prefer to stick with this so that I can keep performing at a higher level (subjectively). Her response was, "Uh, Mom, if you can't see, you will not be performing at a higher level because you won't even be able to drive yourself anywhere." I raised a smart young woman, didn't I?
Anyway, the point of this little piece is to remind you that while I cheer for everyone who is fighting the good fight of whatever incurable disease they might be battling and climbing Mount Kilamanjaro in the process, I'm asking you to please also remember those who are fighting just as hard, but are only able to accomplish maybe one-tenth of what that marathoner or Zumba instructor is able to.
Go well, and stay Fabulous!
Subscribe to:
Posts (Atom)