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Peace and happiness.  Isn’t that what we all strive for in life?  At my age and in my health, I feel I’ve paid my dues and now it’s my time.

I know there are members of my family who may read this and be shocked by some of the things on my mind.  Others will relate, only doing so quietly.  We were programmed, after all to remain silent.  I refuse to be silent anymore.  I think it’s time the truth, MY truth, be put out there in hopes of someone understanding.  This piece will involve not only my immediate family, but my extended family and some friends, as well.

I moved to Tennessee a year ago.  It went from a possible thought to a move a few hundred miles away in a matter of 3 weeks.  I guess you could say it was done in a hurry. There were only a handful of people who even knew our plans until after we were gone.  I told my 3 best friends, I mentioned it to my brother in law while talking on the phone with him about my sister’s (Paula) illness as when we spoke we were down here looking at property. It was also discussed with the investment firm we signed with to rent our house out for us on a lease/option basis.  That was it and we were packed and gone.

I had an epiphany one day while my sister Ann and I (who were very close) were in Dad’s garage, after he had passed, and we were pricing things for an estate sale so we could work on the house and get it on the market.  We were both complaining that she and I had gone though every item in and out of the home and done all of the work without the help of our sister Paula.  I’ll admit, she has her challenges, as we all do, but at that time she was not facing the extra health concerns as she is today and was by no means helpless,  and definitely not as much as she was treated to be then.  Ann was ranting on and as I was half listening, the wheels in my head were also churning.  I remember interrupting her and blurting out,  “I’m done!  People are going to start getting a piece of my mind!  I have eaten shit and kept my mouth shut out of respect for Mom and Dad all these years, but they’re no longer here and I’m done biting my tongue!  I don’t care who it is, no one will treat me like shit or hurt me without hearing a piece of my mind!”   Little did I know, Ann would be the one who got the piece of my mind and we haven’t spoken since.  It’s been over a year now.

By the time we got Mom and Dad’s house listed for sale, I became ill.  I began losing weight, although I was eating the same and then AFTER losing weight, I could no longer stomach food.  No matter what I put in, it came back.  I went to the doc who sent me to a specialist and then a surgeon, I had a series of tests and surgeries, yet they found no reason for any of it.  By this time, I’m down to a mere 78 lbs.  It all began in October of ’14 and in April of ’15, I was hospitalized for my COPD.  My sister Ann came to visit me the day after I was admitted, complaining that Rich hadn’t called her until that morning.  I was taken by ambulance somewhere around 2 am.  At times, I’m treated and released within hours, so why bother her then?  When they admitted me at 7-7:30,  not sure anymore, he called her.  I was in dire need of sleep and they were giving me something, but she wouldn’t leave and kept me awake having to talk to her.  I was upset, but thankful she thought of me and tried to pleasantly visit.  After 5 days of aggressive treatment, they released me saying I had reached my final stage and there was nothing more they could for me.  They advised me to go home  and get my affairs in order.  So, I did.  I went home bedridden and began to plan my funeral.  I made sure Rich was aware of all my wishes and where to find everything he would need, and I gave in and waited to die.

I’m not afraid of death.  I know where I’m going when I leave this world.  I did however decide that it would be me and God who decide when I go, not the docs and I began to fight.  I guess that’s one trait I learned from my Daddy.  He was always the fighter, whereas Mom wanted to die.  I watched her on many occasions take a handful of pills and go to bed for days hoping to never wake up.  That’s another story for another time……

At any rate, I decided it would not defeat me unless the Lord said it would and I didn’t hear it;  I didn’t feel it;  all I heard was push on. My  bed was a matter of maybe 4 feet from my bathroom, so on the first day of me deciding to fight and gain strength, I grabbed my cane, turned to sit in my wheelchair and wheeled into the bathroom and pivoted onto the toilet.  This was a major milestone for me!  As I sat, I could feel my blood pressure and heart rate rise and I began having chest pains.  I had no idea how I would get myself back in the bed, but I had to. My phone was in my pocket, so I called Ann.  She lived just up the street from me.  You could walk it in 5 minutes, so you can imagine the short drive.  With every bit of breath I could muster I asked her to please come help me.  I need help now.  Her response to me was that she wasn’t even dressed yet, didn’t fix her hair or have any make up on.  I simply said never mind and hung up the phone.

I caught my breath, scooted into my chair and shuffled my feet to the bed, turning the chair sideways.  I grabbed my cane and tried to stand, but my legs wouldn’t hold me.  I felt my chest pound harder than when I remember when I had the heart attack several years ago, I became dizzy and nauseous and feared for the worst.  My fear, as I said, wasn’t dying.  It was my then 11 year old granddaughter being the one to come home and find me.  I once again got myself settled down, used my chair and cane and finally got myself in the bed.  I laid where I fell because I had no energy left to reposition.  After a few minutes, I got under the covers, took my medications and dosed off.  A half an hour later I’m awoken by my sister Ann standing in the doorway of my bedroom putting her purse in the floor.  I said,  “no Ann, I just got myself settled down and need to sleep.  Just go on back home”.  She told me no, she was there now and was staying, as she was pulling off her jacket.  I again said, “no, just go home, I’m fine”.  She came back with how she had gotten herself ready to come and sit with me and that’s what she was going to do.  I hate, do NOT regret, but hate that things had to happen the way they did next.  Remember my story about no longer biting my tongue?  I didn’t.  I yelled at her, and I mean I YELLED at her.  “I NEEDED YOU WHEN I THOUGHT I MAY HAVE BEEN TAKING MY LAST BREATH, NOT WANTING MAISIE TO BE THE ONE TO COME IN AND FIND ME.   FAMILY IS SUPPOSED TO BE THERE FOR ONE ANOTHER.  I DON’T CARE IF I WERE IN MY PAJAMAS, IF YOU CALL AND SAY YOU NEED ME NOW, I’M THERE IN A FLASH!  I’M SORRY FOR ASKING FOR YOUR HELP, BUT I DON’T NEED YOU NOW AND I WANT YOU TO GET THE HELL OUT OF MY HOUSE AND GO HOME!”   She put her coat on, grabbed her purse and left, then called my husband that evening to say she would not be calling or coming by until I call her and apologize.  It will be a cold day in hell as I have nothing to be sorry for.  Side with me or not, it’s my stand.

I know my sister talks with many members of ours and Daddy’s family, and I’m sure they’ve all heard her version of what happened between us.  This is the very first time I have put my story out there.  I think it’s time to get it out, let it go, burn that bridge and move on.  As I said, I know many of y0u family members may not agree, some will relate In silence, and I hope that some understand.

So, since I had spent 18 years living in KY raising my granddaughter, taking care of Mom while she was bedridden and takingmy-montra care of Dad till he passed, my purpose there was filled and nothing was left to keep me there, so I moved on.  I’m happier than I’ve ever been and now I feel like a weight has been lifted from my shoulders from that burden I was carrying.

I love and miss you both, Ann and Paula, but life goes on ….

 

Love Hurts

Love.  It’s a powerful word.  We all use it every day, whether we’re talking about family and friends, materialistic things we’re attached to or a place we’ve been.  Sometimes, in my own opinion, the word love is strewn about in situations that don’t warrant the worthiness of the word.

I believe in love and the power it contains.  I don’t use the word lightly.  If I say I love you, it mean I love you …. flaws, scars and baggage included…..unconditionally. If you’re a friend I say that I love, that makes you my family; always, no matter what.  I don’t believe some people get the concept of family, either.

I’m going through a situation of that nature now and I must say it hurts.  Where I was once  “family”  , I am no longer anything, it seems.  Just a plain Jane off the street.

The saddest part of all is that I knew it was coming, just not so soon.

I wish them all the best, but I will be investing no more time and tears over the matter.  I guess I’m on my way to  getting  “over the matter”.

 

Be careful who you let in

Walk in peace ….

Keepin’ It Real

Depression and anxiety are two conditions that,  even those without an autoimmune disease such as Lupus, can completely wreak havoc in your mind, body and spirit.  Mental illness ( let’s just be real and call it what it is ) runs in my family.

In a nutshell, my birth Mother died at the age of 33 because she drank herself to death. She drank to drown out her life, I’m sure and she did just that.   My aunt died at the age of 49 from congestive heart failure.  She was the smiling peacemaker who held it all in until it literally killed her.  Their brother committed suicide  in  ( I believe it was )  his early 60’s .  They had another sister who stayed in the sticks near the old homestead and every time I was around her, she seemed too happy;  like she lived in la la land or something.  Then there was one more sister, the one who adopted me at a year old when my birth Mother died, the one who was my Mom.   She had  her struggles with both depression and anxiety and was on and off meds for as long as I can remember.  She had suicidal tendencies and from time to time would take hands full of pills and go  to bed and we wouldn’t see her for days other than checking all the time to make sure she was still alive.  I had two sisters ( cousins ) and they were 10 and 11 years older than me. By the time I was 10, I was the only child in the house with a mentally ill Mother and a Daddy who worked his ass off to provide for us and two sisters I would never have anything in common with, it seems. I could go on and on.  Damn, pretty big nutshell, sorry  😦

My family always listened to music and when I was only 4 years old, Daddy bought me my own transistor radio.  I’m sure that was the day that music became my refuge.  I just wouldn’t realize it until my sisters both married and moved out.  I guess it was inevitable that I would have depression and anxiety with my family history, but mine hit in my early years.  My parents were very overprotective and I wasn’t allowed to go anywhere and no one was allowed to come to our house, so I was always alone.  Music was my friend, it kept me company.  At some point, I started writing.  I was actually pretty good at it for my age, too. I had some poems and a short story published in the middle school book they put together every year.  Both writing and music became my own prescribed therapy drug.

There came a day when that wasn’t enough, so I became interested in alcohol.  My Dad always had something in the house ( even though he didn’t drink ). I’d take a little glass olive jar or something and fill it with booze and take it to school with me.  That was the beginning and I self medicated with alcohol for several years, getting worse and worse.  Then on February 4th, 24 years ago, Rich and I stopped drinking cold turkey.  We moved away from all the friends and the temptations that could jeopardize our sobriety and we did it …. we quit.

Some time later, I’m not sure when, depression hit me hard.  I knew I had to have help, so Instead of thinking I can doctor myself, I actually saw a psychiatrist and was put on medication, both for depression and anxiety.  After several weeks, it had helped and thought it would be ok if I stopped taking it; like it cured me.  Yeah, if you suffer, you know the drill.  Over the years it would be on and off, on and off.  It got old.

Since 1997 when I was diagnosed with Lupus ( SLE ) I have treated my depression.  I’ve changed meds over the course of time, but usually taking something always.  I had, however,  ignored the anxiety.  It started subtly.  I would have a bad feeling that would make me sick to my stomach.  I had one symptom after another before I started having full blown panic attacks.  It’s been happening for years.  My heart races and feels like I’m having a heart attack, I can’t catch my breath, I get dizzy and nauseous and feel like I’m going to pass out, all the while having this paralyzing feeling like I couldn’t move if I had to.  Certain things would trigger them, some of my phobias that have developed with the anxiety.  I won’t ride passenger in the front seat of a car with anyone.  Everywhere I go,  I drive or I’m in the back seat with my head down so I can’t see.  Lately I had gotten to the point I would rarely ever even leave the house.  The motorcycle was my worst fear as of late.  I knew I had to do something.

So …. I went and saw a new doc.  My daughter says he’s nothing  but a legal drug pusher, but aren’t they all?  I just know that so far I like him and I was impressed with how, after reading my paperwork and asking me several other questions, he was able to explain to me exactly what was going on and what I need to do to fix it. I also like the fact that he pointed out 3 areas that need treatment, but he’s going to treat one at a time in case of a reaction to a new drug or whatever.  He’s addressing the main issue first, which is my panic attacks and so far the medication for that is working fairly well.  Next month when I go, we will tackle the second most important symptom, which is adjusting my medication for depression,  and then the third.  Once he finds meds that work on all three areas in balance, it will become my daily routine and I’m hoping to be back to myself once again!

I encourage any of you who feel you may have even the slightest feeling of depression or being overly anxious seek a doctor and get help.  That self medicating crap will get you killed or, even worse, leave your brain fried and having to live with it.

Just keepin’ it real …..

 

Just breathe ….

im exhausted from trying to be stronger than i feelJust breathe.  These are two small words that most people take for granted.  I’m not fortunate enough to be one of those people.

If you are reading this, then you are family or friend and you most likely know all about my health struggles over the years, so I won’t backtrack too far and bore you with details again.  If you don’t know me well, just understand that I have lived my entire life balancing the symptoms of Lupus, Heart Disease, COPD, and Parkinson’s Disease and I’m growing very tired and weary.

When I lost my Dad back in June of 2013, he had been ill for some time.  My Lupus was in remission and my symptoms were bearable, which allowed me to put my own health on hold and concentrate on caring for him.  It was only by the Grace of God that this happened this way.  HE knew where I was needed and allowed me to be there.  I was thankful for that time, not knowing that after his death would be the beginning of the end for me.

In September of that year, I became very ill.  I’m a small woman, standing only 5′ 1″ and weighed 117 lbs. I got dressed one morning and realized that my clothes didn’t fit.  I don’t remember exactly how many pounds I had lost at that point, but then  I began throwing up  (yes, that came after the weight loss had begun) .    I couldn’t keep any food down at all, and when I say NONE, I mean NONE. Absolutely everything I ate came back and I lived like that for a few months.  Needless to say, I continued to lose. I dropped down to a whopping 79 lbs. before it was over.  You can imagine how thin I am and how weak it has left my body.

I went to my PCP and he began running tests.  He checked my gall bladder and all the usual things that would include vomiting and weight loss, which tested fine.  He referred me to a surgeon who did a stomach scope and colonoscopy and they both checked out fine as well, with the exception of her finding pre-cancer cells in my stomach. She said it was nothing to worry about at that time, put me on medication for it,  and said she  would just keep a close eye on it.  They then found that I had lymph nodes in several places in my body that were severely enlarged, so now they’re thinking Lymphoma.  She removed one of the larger ones and tested it and that also came back negative.  It left her shaking her head, not knowing what to do next.  So, we did nothing.  This all took place in the first few months of 2014.

When I got my Parkinson’s diagnosis in October of 2011, my only symptoms at that time were muscle rigidity and slight tremor.  I was put on medication for it and the doctor checked me periodically and said it was progressing very slowly, which I was truly grateful for.  It’s difficult for me to pinpoint a time frame on the progression because I have so many health issues, but my tremors have become much worse, I’ve lost a lot of my muscle control and, my vision has worsened to the point that I’ve had to change my prescription on my glasses 3 times in the past 2 years.  Now I’m having much difficulty swallowing most days.  This makes it hard to take my meds, but I do the best I can by taking them in a spoonful of applesauce or something to help them go down. The muscles all through my body go into spasms and will remain rock hard for days at a time, which causes me much pain and keeps me from being able to move about.  I have all the usual dizziness and such that go along with it,  which also makes it hard to be up and moving.   Suffice it to say, they’re telling me I’m progressing much more rapidly now.

My heart is shot.  That’s the only word I know to use to describe it.  I’ve talked before about my heart being enlarged to twice the normal size, and that puts a great strain on it along with my valves being deformed since birth.   I had a heart attack in August of 2012 and my cardiologist wanted to put a pace maker in, but admitted that he didn’t know how much it would help.  That was when my Dad became really ill and I had to concentrate on him and  I never had the surgery.  My heart rate on a daily basis is all over the charts.  I can go as high as 200 bpm to 30 bpm in a flash and vice versa. I have high blood pressure, which is an added threat, but is controlled fairly well with my meds.   I have chest pain and uncontrollable anxiety as a result and I never know when having it rise or fall too quickly will bring about the final beat.

My lungs are in the same shape as my heart;  shot.  Yes, I’ve been a smoker and that has contributed greatly to the wear on my lungs, but my disease plays the biggest role.  The ambulance has come to pick me up more times than I care to count because I’ve stopped breathing and passed out.  Once at the hospital, they would give me IV treatments of high dose steroids and antibiotics and put me on a heart monitor to keep track of that.  Sometimes the treatments didn’t do so well and I would be admitted, but sometimes that was all I needed to give me another jump start and they would send me home.  Of course, I always prayed for the latter of the two.  I’ve made 3 trips to the ER in the past 2 months.  I was admitted this last time and spent 5 days receiving treatment, but this time, it didn’t help at all.  After all they did for me and keeping a close eye on both my heart and lungs, I was released from the hospital last Sunday.  I wasn’t in any better shape when I left than when I arrived and they said they’ve done all they can do for me.  There is no treatment left that will help and I’ve reached the end of the line.

Last Tuesday, I went for a post hospital appointment with my PCP and he went over my options.  He asked if I had ever considered a lung transplant.  He said he felt like it was worth at least checking into and discussing with my Pulmonologist.  At first, I felt really positive about that possibility, but it didn’t take long for reality to set in once again. I told him that if my lungs were my only concern, I would jump on the opportunity with a quickness.  However, that’s not the case.  I can’t just consider the quantity of life would offer me.   I also have to consider the quality of life.  If I get a chance at new lungs, I would be able to breathe better, but I still have the heart, Lupus and Parkinson’s issues to deal with daily.  I am willing to discuss it further, but I’m sure I won’t choose that as an option.  I would much rather see a good set of lungs go to an otherwise healthy person who could truly benefit from them.  I am taking his ideas to heart however, one of them being a change of doctors.  I have all of my own specialists  (cardiologist, pulmonologist, rhuemetologist and neurologist ) that I see and have been very happy with the care I have received from them.  He told me he would like to see me go through UK Hospital in Lexington, Kentucky where I could have all of my specialists in one place so they that together they could collaborate and and decide if there would be another course of action for me.  UK is one of the leading hospitals in the country, too.  They have all the latest state of the art treatment centers and some of the best doctors anywhere.   I think I may take him up on the suggestion just to see where it leads.  This in no way means that I have changed my mind about my situation for the time being, however.

If you truly know me, you know how much I have struggled with my health, but I’ve always been a fighter.  I have never given up or just laid down and accepted things for what they appear to be.  I fight with every breath to stay positive.  In 2005, they estimated another 5 years or so for me and I’m still here.  I know it’s because I refused to give in to it and, that coupled with much prayer, faith and belief, I have beat the odds.  I have gotten to enjoy 10 more years of memories with my loved ones that they felt I would have been denied.  No one can ever convince me that it’s not due to my will to live and my attitude about it.

I know those of you who love me are having a hard time accepting my desire for it to be over.  You must understand, however, the human body can only take so much.  I feel I have endured more than my share and come out on top, but I’ve grown weak and tired.  Not only is my body giving into it, so is my spirit.  I believe in GOD and Jesus Christ and accepted HIM as my personal Savior many years ago.  While my heart breaks for my loved ones and what they will endure when I’m gone, the sound of going HOME is very appealing to me.  No more suffering, no more struggling, no more pain.  I believe it’s time to accept what is and let go.  I do realize that until HE’s ready for me, I will remain here, but when the time comes I will be at peace forever more.

I treasure every memory, every moment I have had with you whether you are someone who is physically a part of my life or someone I have connected with through this wonderful world of the internet.  You have touched me with your love and support in a way you could never imagine and I love you for it.

Thank you for being a part of my life in the slow lane.  I have enjoyed our journey.

Much peace and love always,

Tina

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Wow, what  long month it has been!

The entire year of 2013 has been stressful.  First it was caring for Dad as he declined and then losing him in June.  Since that time, it has been all about settling his estate while grieving.  I’m bless that my health endured through this stress, but I think it’s finally catching up with me, and at the busiest time of the year, at that.

Now November and, let’s just say, this has been the longest month of them all.  It began with me being sick again after overdoing it through the month of October.  Then, on the 9th, which was also my husband’s birthday, I ended up in the ER.  I ended up back there two days later for more treatment, along with more meds to take at home.  I tried to recoop as much as possible the next several days by having to remain in bed and doing virtually nothing.  The following weekend would be the granddaughter’s birthday, complete with a bowling and pizza party for 5 screaming 10 year old girls, followed by cake and ice cream at my house.  Needless to say, I needed all the energy I could muster for that one.  I did manage to make it along with shopping for the hubby’s birthday the next day, then WHAM!  I’m down again.

Monday, the 18th was mine and Rich’s anniversary and guess where I was all day and night?  You got it …. bed.  I had never missed an anniversary before.  They’re too precious to me and I was crushed.  I need to mention that through all of this, I neglected to acknowledge my sister’s birthday on the 15th; oh boy.

On top of all this, this was an especially stressful month full of trying to get my Mom and Dad’s house sold.  My sister and I spent the summer going through things, clearing out, having yard sales and seeing that the painting and cleaning were done so we could put it on the market.  We were fortunate in that the house was only on the market for two and half weeks before selling, but the closing was put off several times, which didn’t help that stress factor any at all.  Finally, we closed yesterday and the responsibility of it is over.  I barely made it through it and have been pretty much down since,  Now we have the holiday next week complete with my two daughters and all three grandkids.  The dinner wish list just keeps growing and I’m wondering how many of those wishes I will be able to grant.  I can’t wait for us all to be together, though.  Both of my girls are out of state, so our get togethers are getting fewer and farther between.  This does not make me a happy camper.  I love my family with all my heart and treasure the times we are together.

Before I get too wrapped up in the stamina I will need to get through Thanksgiving, I have to make it through today.  I lost my Mom amost 6 years ago (in Jan) and today is her birthday.  I miss her AND my Dad so much and these days are especially hard.  I know many of my friends and family have been through the same thing and I have gotten so much strength from them.  I thank you all from the bottom of my heart.  I don’t know where I would be without my friends and family.  They all mean the world to me.

So, I suppose that until next week when the cooking and baking begins for Thanksgiving, I will rest accompanied by trips down memory lane, missing my parents and dreaming of the day when we will be together again.  Of course, along with that will come many tears, both of joy and sadness, and I shall delight in each and every one.

I hope your November has gone much more smoothly than mine and that things turn around for me over the next two months of holidays.   After all, once I get through them, it’s back to back birthdays again!

Love and Peace always …..

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.

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.

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!!!!

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.

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