Fight the Good Fight

Today is May 10, 2011…..World Lupus Day.  I do what I can to spread awareness on a regular basis, but today it is even more important for me to do so.  There are so many of us out there who suffer from this horrid disease, yet most people don’t even know what it is.  Let me introduce you to Lupus.

Lupus is an autoimmune disease for which there is no cure.  It is estimated that between 1.5 and 2 million people in the US alone have this disease and over 5 million world wide.  Lupus is a condition in which your body attacks itself.  Our bodies create what is called anitbodies that fight against disease and foreign bacteria, but someone with Lupus creates many more anitbodies than needed and it causes them to attack good tissue as well.  This good tissue can be in any part of the body.  The most common are the skin, joints and muscles, while some like myself, have them attack organs as well.  It can be known to destroy the kidneys (which I’m fortunate to not have happening to me), the heart, lungs and brain.  I do have the heart and lung complications and it is thought that my time here is very limited due to the organ involvement.  While I try my best to remain upbeat and positive about life in general, I must admit that there are times when it can really get me down….both physically AND emotionally.  I don’t know how anyone with a chronic illness such as this can do anything but.  One thing I do know to be true about myself however, is that regardless of how many ‘bad’ days I have and how bad they can be, I will never….and I repeat NEVER…. give up without a fight!  Life and those I love are far too precious to me. 

I’m sure without even realizing it, you know someone who is effected by this debilitating and often fatal disease.  Please join me in spreading awareness by educating yourselves and others on the topic so that the word will get out and researchers will have no choice but to pay attention to our cries and work as diligently to finding a cure as they do for other diseases such as Cancer, MS and Aids, just to name a few.  With your help I am confident that although it probably won’t be in my lifetime, we WILL find a cure and end the suffering of so many people around the world.

As always, I keep you all in my prayers and hope you do the same for me.  Life is what you make it, and I choose to make mine one in which, when I’ve gone to meet my maker, people can say that I lived it to the fullest and loved with all I had.  I will continue to fight the good fight for the remainder of my days.

Just Feelin’ Kinda Flat

This is one of those days. I don’t care about anything and just wish I could disappear into a dream world.  I hate being depressed like this. It’s as if the problems are so overwhelming that I simply cannot cope.  I’ve had chest pains on and off for the past few days again and feel like there’s an elephant camping out on my chest.  As if that weren’t enough, there are some who are getting on my nerves so badly I wish I had a magic wand to make THEM disppear.  This is not me.  Regardless of what’s going on in my life with my health and whatever, I can usually maintain an upbeat attitude and plow through.   Today I’m wondering if it’s even worth it.  I suppose the weather isn’t helping matters any.  It’s so dark and dreary, rainy and turned colder again.  I must say that the sunny, warmer days do help.  Hopefully the rain will end today as they say it will and tomorrow will look brighter.  I know there are many who have it worse than I do and I feel guilty even complaining.  Guilt…….a whole new ballgame in itself and I’ll save that topic for another day and another blog.

My Internal Rollercoaster

Well, I finally made it back to the cardiologist yesterday.  I had worn a heart monitor for a month and went to learn the results.  I knew I had been feeling pretty bad, but had no idea just how bad.  He has determined that we need to put in a pacemaker.  It’s dangerous as my heart is so enlarged, but he says that at this point, I have no choice.  My test results showed that my heart rate is all over the place……in the 40′s one minute, up into the 170′s the next with lows as far as 30 beats per minute and as high as the 190′s.  No wonder I stay so wiped out all the time.  He asked me if I feel fatigued and dizzy.  Of course my answer was YES…..well, duh!   I don’t know how you could put your heart and body through that and not be left with no energy.  I was surprised to hear him say he wanted to try the pacemaker as he told me once before there would be no way due to the enlargement issue, but I guess he’s trying whatever he can to buy me more time.  I’m willing to try it if it means sticking around a little while longer.  I went to the GP today and was scheduled for more tests.  I am long overdue for a mammogram and will be having that done one day next week.  He also gave me orders for  a bone density test.  I take so many steroids for both my Lupus and the COPD and they are very damaging to the bones.  I’m a little afraid of getting the results of that one, but relieved to know it can be managed by taking……yep, you got it……more meds.  Amazing the things we go through just to keep these old bodies running.  I’ll keep you posted and appreciate you taking the time to read my updates!  God bless and be healthy!!!!

Lost Myself in a Bad Day

Have you ever wanted to die?  No.  I mean, really want to die.

 I found out what that feeling is like this week.  I know what you’re thinking.  Like many people with chronic illness,  I get down sometimes and ‘sick and tired of being sick and tired’ and think, “I wish it would all just end”, but this was different.   Completely different, and scary thinking about it now.

This past couple of months has been one constant flare for me with valleys and peaks over and over again.  I have been for several rounds of treatment in this time and just couldn’t seem to get a grip on getting better.  This in itself certainly takes a toll on one’s body and couple it with all the steroids needed and the complications that go along with them, you can imagine my state of health.  I’ve seen many things with my disease over the years, but what I have experienced this past week is without a doubt the scariest ever. 

As you know, my heart and lungs have been effected by the Lupus and I have my ups and downs with them.  My heart is severely enlarged due to the damage that  inflamation has caused and it has dropped into the position of one in their 80′s or 90′s.  I have arteries which collapse from time to time, two murmers and am looking at vavle replacement at some point in the future.  As a result, I have a great deal of difficulty maintaining a healthy blood pressure and it can go pretty high at times, even with daily medication.  With the heart being so large, it sometimes doesn’t want to continue beating and will slow it’s pace to a dangerous rate.  At the same time, it can also beat very rapidly at times from out of nowhere.  This is something I have learned to live with and am able to cope fairly well.  It doesn’t hurt to know how to dial 911 either.  The lungs are another issue on their own.  I have COPD and have much trouble keeping my lungs clear.  I am on nebulizer treatments every 4 hours, three different daily inhalers and oxygen at night when I sleep to keep my heart rate up.  This I am able to cope with as well, usually.  When I have a flare from the COPD, I simply start the steroids again, up the breathing treatments and hit the wheelchair to save my breath from walking.  This was what I thought would be the case last week.  I had a bad flare and went back to the doctor and he increased my breathing treatments to every hour for now and prescribed another steroid along with shots in the office.  I figured I was once again on my way to getting better. Much to my surprise, it got worse…….much worse.

The doctor was concerned that I had been on the steroids for so long with no positive results, so he decided to switch me to a new medication.  I didn’t know until this week that I am allergice to it, but I soon learned the hard way.  The reaction was unlike any I have ever had before, though.  I started with the itching and swelling.  It’s uncomfortable, but no big deal.  Next, my heart went nuts.  My blood pressure kept shooting up to stroke level and my heart would race.  It happened several times in one night and left me completely void of any energy.  The next day, the inflamation continued to get worse.  By afternoon, my throat had swelled until I lost the ability to swallow.  I quickly realized it had to be the new medication, so I discontinued it and thought it would begin to get better. I was wrong.  What I went through after that, I wouldn’t wish on my worst enemy.

I became dilerious.  I was thinking and talking out of my head, as if on some kind of psychedelic drugs or something.  I had pain all over my body that left me writhing around like a snake on the ground. I moaned in pain and had no control over my mind.  I had hallucinations of the strangest and scariest things happening and it was like I was watching a bad movie and couldn’t change the ending.  Between the pain and the feeling of simply losing my mind, I truly wanted to die. Not the ‘end this or take me out’ kind of die….. just really WANTED to die. I couldn’t take the pain or the crazy places my mind was taking me anymore.. Dieing had to be better than this.  I begged to die.

I know depression all too well.   It has become my friend.  I do get depressed and wish for a different life or for this one to be over and end all the suffering, but I am not the type of person to give up.  This was not me, though…..it was a reaction to the drug.

I know now that when they ask me if I’m allergic to this particular category of medication, my answer is undoubtedly yes.  I also know that with what my mind and body have been through this week, I am lucky to be here and thankfully so.

I just wanted to share my story in hopes of maybe helping someone else who has been there or may be faced with the same situation.  I realize there are physical side effects to any medication, but apparently the mental side effects can be just as severe at times.  Be careful out there in taking care of yourselves.  Day by day, I am ever so slowly climbing out of the mental hell I was trapped in this week and I would never want to see any of you go through it.  The physical turmoil is old hat to me, but this mental thing?  Don’t want to walk that road  and hopefully will never have to again.

Be well and be blessed and thank you for being part of my life…..bizarre as it is.  Now that I BELIEVE I have my mind back on track, hopefully the body will follow and I can get back to being me……not that crazy lady.

Love you, Dad

What?  It’s 2011, are you serious?????

Man, did I lose a lot ot time lately.  Ever since Christmas, things have just simply overwhelmed me and I am deffinitely no longer on track.   Almost losing a loved on can do that to you.

Most of you know that I came close to losing my Dad over the holidays.  The days and nights were spent sitting at his bedside and wondering how life would go on without him.   I just lost my Mother three years ago on January 18th and was not willing to part with him just yet.  Thankfully, he had the same idea and pulled through with flying colors!  Like his doctor told me in ICU….. he’s one tough ole bird!  We were fortunate enough to celebrate his 81st birthday the day after he was finally released from rehabilitation and it was a milestone for him to say the least.

It started in November when he became ill with pnuemonia.  He just couldn’t seem to get over it after two rounds of anitbiotics and lots of rest.  Then on Christmas Eve, he was sick and couldn’t keep anything down.  I begged him all through the weekend to let me take him to the hospital, but to no avail.  Early Monday morning (12-27-10) he relized he needed help and called 911.  I called to check on him just after he made the call and met him at the hospital.  At first the doctor thought he had some kind of blockage in his stomach, but blood levels would later show that his white count was SEVERELY ellevated and told them there was major infection somewhere in his body.  They did a CT scan with contrast and learned that his gall bladder was rotten…..yes, rotten.

My Dad is getting older and has many health concerns to begin with.  He has had 4 heart attacks over the years, leaving the entire bottom half of his heart dead,  two strokes and only has one kidney.  It took them two days just to get him stable enough for surgery and even then, the doctors weren’t giving us much hope.  They found when they got in there that his gall bladder was poisoned and had leaked gangrene all through his system.  They explained to us that he would be on life support after the surgery and the chances for his recovery were slim to none. 

Needless to say, I was scared to death.  My Dad is my first love and I’ve always been somewhat of a Daddy’s girl and I just simply couldn’t wrap my mind around the thought of losing him.  I was there the morning they took him off of life support and all I could do was pray.  He amazed the doctors by adjusting right away!  That was  a miracle in itself.  On the 8th day after surgery, I signed him into a nursing facility for rehab to gain his strength back.  He fought like no other and was back home just 10 days later as opposed to the month or two the doctors were expecting.  He’s now getting on with his life again.  He’s back to walking every day and playing dominoes with his buddies at the mall and we can all breathe again.

It was one of the longest months I’ve ever lived in my life.  I stayed with him in the hospital and rehab almost around the clock to make sure he was taken care of in an adequate manor.  Sitting in a hospital chair for a month certainly did a toll on my health.  Once he was released, we closed up our house and went to stay with him for a week to help him out and then just like that, the doctor said he was good to resume his life, so I came home.

Having Lupus myself, stress is one of the biggest factors in triggering the disease and you can imagine what that month long ride did to me.  I ended up going for treatment myself twice in that month and am still not recooperated yet.  I’ve had so many steroids lately I look like a freak from the circus.  (for those who don’t know, they make you swell up and look distorted when you take strong doses like I do)  I just can’t seem to replentish my energy level now and the pain is unbearable these days.  I wouldn’t want him to know this, although he does know I had to go for treatment, he thinks I’m getting along fine now.  No need to worry him.  I pretend all is well and all that matters is him and his health, all the while wondering when this monster will let me get well again.

My family means everything to me and although this trip has almost done me in, I wouldn’t have changed a thing.  We find the strength to go on and with determination, can overcome any obstacle, even Lupus…..and I WILL overcome!   It will just take me longer this time than ususal.

Thanks for letting me whine and please, if you have loved ones that you don’t communicate with on a regular basis, take the time to visit or give them a call.  Let them know how much they mean to you while you’re still here.  One never knows when they won’t have the chance and I, for one, wouldn’t want to live with that regret.

I am a complex combination of human and spiritual being striving to find peace and happiness in my life. I know love and know how to love. Today, I would like to extend an invitation to you all to get to know me, but more importantly, to get to know yourselves.

Like many of you, I have had a hard life. Many of the obstacles I have been forced to face have been a result of poor judgement on my own part and some a result of other’s actions.  Through all of the highs and lows, I have tried my best to learn from each experience the lesson set before me and to choose a different path the next time around.  In doing so, I have had to do a lot of soul searching in order to find my own inner peace.

Our whole is made up of many parts. We all have more than one characteristic to our personality that stands out. Those of you who know me well, know that there are several aspects of my life that have become prominent. In order to be my complete self, this means celebrating the feelings and emotions that stem from all aspects.

I believe we were brought together for a reason. I have many friends and loved ones with whom I share different likes and dislikes. Each one of you has a purpose in my life. Some of you are my family. Some of you are friends who have turned into family. With others, our common ground could be a love for music, a sense of humor, having a sense of adventure, believing in love, or wanting peace….just a few of my prominent aspects. 

Regardless of what we have in common or don’t have in common, I love you. I love everyone. I think that if more people had love in their hearts for humankind, the earth and all who inhabit it, we could one day stand as one and rejoice in the glory of it. Now, while I love all, let me make it clear however, that I change for no one. It has taken me many miles to get to know ME and to be proud to don the scars that have become a great part in making me who I am today. You must take me as I am, or leave me alone. I only answer to myself and GOD.

That being said, I truly believe that if we do our own soul searching, learn who we REALLY are and are meant to be, we will achieve that inner peace which will allow us to love unconditionally and to practice tolerance when it comes to the differences between us. Once the world learns to be tolerant of one another and embrace our differences as well as our likenesses, we may finally know peace without as well as within.

Make sure you know and love yourself. Then and only then can we be able to allow that love to flow freely onto others. Find peace in your heart, soul and mind, and you will find it in the likes of others. Not just today,  the International Day of Peace….but every day, let us strive to make this world a better place. Learn tolerance, learn love and learn to spread PEACE!

…And the beat goes on….

It seems like so long since I’ve written an update. So much going on this past couple of months and I wasn’t sure if I’d ever get my head above water again.

Last time I wrote, I was going to the cardiologist for testing on my heart. After quite a bit of trial and error with medications, we finally found one that works for me! My blood pressure is getting back to normal and my heart rate is now staying up around 60 beats per minute, which is much better than 40. A woman’s heart rate should stay around 80, so I’m still a little low, but I’ll take it!

Good thing the heart is doing better. My daughter was involved in a really bad car accident on May 30th and we almost lost her. Had I been in the health I was before, they would have needed to add me as a patient too. Hey, we could have been roomies! hahaha!  All kidding aside, I was truly scared. Thank God for answered prayers, she is well on her way to living a normal life again after a few surgeries. She is still in a wheelchair for a few more weeks, but will make a full recovery.

She came home with me when she was released from the hospital. As if all the hours there weren’t enough, then it was be a caregiver to her when she was released. I’m not complaining mind you. I love my daughter dearly and would do anything in my power for her, but when your health is in the state that mine is, you need a caregiver yourself. Needless to say, I am now worn completely out and can’t seem to gain any energy back. I can’t get anything done as I simply don’t have the strength and unfortunately have no one to help ME!

I know there are some of you who will say that I am ‘whining’, but living with Lupus is no easy task, I don’t care WHO you are! All I can say is walk a mile in my shoes…just for one day. Then you’ll know. I wouldn’t wish this shit on my worst enemy. There are times when the stress levels are low and it’s all I can do to get out of bed in the morning. Add everything that is going on in my life and it’s almost impossible.

I try really hard to stay positive and count my blessings. I think  I do a pretty good job of it, too. there are times like these however when I would just love to crawl under a rock and die. Just disappear from the face of the earth. I wonder if anyone would even notice?

 

 

 

 

 

 

 

 

 

 

The Voice In My Head

As I begin to peel my eyelids one from another, I can see the sunshine cascading through the window much in the way that a great song floods your heart with emotion. I think to myself, “Today is going to be a beautiful day”. Just then as I turn my head toward the edge of the bed and slowly start to sit up, there’s that voice….that brutally honest voice of reality that I despise with a passion saying “You can’t do this!” In an attempt to ignore the voice, I reach to turn off my oxygen machine and swing my legs around to stand on the floor. As I feel my feet land on the carpet, I also feel my legs begin to tremble and my knees buckle. My head starts to spin and I reach for the bed to steady my stance and remain transfixed for several seconds. In my mind, I yell to the voice, “Today is going to be a beautiful day!” and from my statuesque position, I slowly place one foot in front of the other until my stride carries me ever so slowly from one room to another.

 Thank God it’s only a matter of a few steps from the bed to the bathroom. I could sure use a place to sit and rest right about now. I go about my business and all the while, the voice keeps trying to get my unwanted attention. I dry my face and hands and mumble under my breath, “Today is going to be a beautiful day!”

Now for some caffeine! Once again as I steady my legs, I begin to shuffle one foot after another and make my way to the kitchen. Whoever thought of putting handrails on a staircase was pure genius, however as I  lift one leg to step down, I hear that voice again: “You can’t do this!”  At the same time, the other leg lets me know that the strength simply is not there to support all of my weight so I sit on my behind and slide down the steps much as children like to do when they play. Too bad the pain reminds me that it’s not fun and games or I could grow to like this. I just try to block it out and remind myself again that “Today is going to be a beautiful day!”

The coffee is hot and floods my senses with a feeling of warmth and safety. Sitting in the chair at the kitchen table, I can hear the birds chirping outside. Nothing like the sound of nature in the silence to bring a smile to my face and remind me that I’m alive. In an effort to visually inhale the morning beauty, I stand, take 3 steps and reach to open the back door. As I step onto the porch, I find myself looking at the chair as if it were 100 miles away. I hear the voice scream to me, “You can’t do this!” My shaking legs take the 5 steps and my body falls into the chair with the dead weight of a corpse.

It only takes a split second, however, for the sights and sounds of the trees blowing in the wind to take my mind away from the pain and the weakness. as I watch the smooth and airy flight of the butterfies lighting gently from one wildflower to another on the edge of the woods in the back and I proceed to  ask myself my daily question:  “What will you do to give back today?”

This is what I’m giving back today: A journey through approximately the first hour of my day….a glimpse into my daily morning routine. Not much of a way to give back, you say? I beg to differ.

 How many times in that first hour did I have to  battle the sypmtoms of my disease just to perform simple tasks that most people take for granted each day? By the end of that hour, most people could be showered, fed and ready to go. When the hour closes the only place I’m ready to go is back to bed.

Are you one of the fortunate ones who doesn’t have to think about every move you make and every ounce of energy that you use? My gift today is to try and make you see how fortunate we all are. We all have our struggles; I don’t care who you are or where you’re from, life is not perfect. Just remember to stop and take time to smell the roses as they say. Give thanks to your higher power for the many blessings that you DO have in your life. Always love and respect yourself as well as others for who and what you are and be kind and tolerant of one another’s needs. Love one another and never take one single moment you have for granted as it can be taken as quickly as it was given. Cherish your life for what it is and learn to be realistic and to  listen to that ‘voice’ in your head sometimes for we all have our limitations. Sometimes the voice really does look out for our best interest. I guess it all balances out in the end.  Just remember that common sense comes from the mind, but every thing else must be felt with the heart.

Much love and blessings!

I’m Not Ready for Morning Yet

Another day.  I’m thankful I woke to see it. Wait, what am I talking about ‘woke’…..I don’t think I ever really slept!

I’ve had a very sick little one at home to care for over the past week and no one to help with her. Can you say exhausted? I made it to the bed last night and collapsed. I felt so drained I believed sleep would come easy. Why do I try to fool myself like that?  I know those are the nights when rest simply won’t come. The pain is far too severe and it keeps my mind racing so I can’t turn it off long enough to dose.  I lay in the bed and rocked most of the night until the wee hours of the morning.  Just before time for the alarm to go off, I finally dosed off.

When I woke, I realized that little bit was still in the bed!  Hubby was going to get her up and get her ready for her first day back at school after being so ill, but his alarm didn’t go off on time and he overslept.  He decided to let her sleep so as not to make himself run late for work. You know what that means, don’t you? When I finally got up, it was rush around and get her ready and then drive her to school and sign her in late.  I would have just kept her home again the way I was feeling, but when I opened her door to wake her, she was sitting in her bed crying her little eyes out because she missed another day of school. That broke my heart, so I pushed myself and ran around the house like a mad woman on a mission, then out the door we went. I was so dizzy on the drive over there that I just prayed that I would make it there and back safely.

I’m now home and so need to go to bed, but there are things to do that only I can do today.   Tonight will be a night of heavy medication for sure. The body can only go so long without re~energizing and I think mine has reached it’s limit.

I try to play the hand I was dealt the best I can day to day, but today is one of those days when I seriously wonder…..just how much can I take? This is no life!  Regardless, it will go on for the remainder of my time here and I suppose I will keep pushing on and trying to be greatful for what I do have.  That’s the only thing that gets me through in times like these….counting my blessing what few there are……..

Sometimes I Really Miss Me!

May is Lupus Awareness Month!   I recently signed up for the Lupus Walk Now in Lexington in August of this year and I’m getting psyched about it!   This will be my first walk for the cause, although I’m sure I won’t be ‘walking’ it…..more like rolling!   Either way, I will be there.

I’ve actually taken on a few new things lately; this blog being on of them.   In doing so, it has become very apparent to me that my mind is not at all what it used to be.   As you all know, I am computer illiterate.   It has only been in the past couple of years that I have even known how to use a computer.    I did work with computers when I was younger and did office work in and out of high school, but they were quite different than the computers of today.   At any rate, I’m learning as I go, and finding it to be quite a daunting task.

There was a time when I was a fairly inteligent person.   All my life, learning came easy and I could grasp things pretty quickly.  Those days are long gone now however. I am having trouble retaining and storing information.  I have no sense of concentration and in order to fully comprehend what it is I am trying to learn, it takes several go arounds before it makes enough sense that I will remember it. With most things, in time I get it. There are some however that I must simply walk away from admitting that it beat me. I hate that! I have never liked for anything to get the best of me and would fight until I succeeded. I don’t know exactly what is causing these sypmtoms, but I know they are getting progressively worse as time goes on. It scares me…the thought of losing my mind one day. I don’t know that I would want to live that way.  I remember taking care of my Mother after her stroke and she was such a different person. All I could think was that my Mother wasn’t even in there anymore and it hurt. I don’t want to be that way.

Last night I was on Skype with a couple of dear friends and everyone was talking and surfing the web….except me. I couldn’t do both at the same time. One or the other, but not both. When did I lose the ability to multitask? I used to be so good at it!  This disease has completely turned my world upside down and turned me into someone I’m not. It does that to you….moves in and takes control. I don’t like not being in control.

Today was an especially long day. The baby was really sick yesterday which drained every ounce of energy I could muster up, and today there was nothing. I simply had no spoons. Hopefully tonight will bring some rest and tomorrow will look brighter…..