Good-bye dear friend……

Tomorrow, we join together in remembrance of  a friend whose battle with cancer has finally come to an end.  We hear these tales all the time.  We will celebrate his life, cut short, by a monster.  We will rejoice in his eternal salvation with Christ, our Lord.  A dear man, devoted father and husband, whose last wish was to see his son graduate from High School.  Wish granted.  This past Saturday night, we all praised GOD for allowing this man to witness his son walk across the stage and receive his diploma.  It was a time I will never forget.  Not a dry eye in the chapel as we wept openly for this small victory.

We say good-bye, for now, to this man, who we will see again in heaven, one day.  A life taken too soon.  A man who fought the good fight, but did not lose anything more than his pain-filled existence.  Thank you, God, for bringing him home.

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Brain on Fire!

APD-Brain-on-fire_optWell this will be an interesting post, I’m sure. 🙂

In 2008, with just a bit of luck, I had an MRI which showed I was suffering from Bacterial Encephalitis.  Well, the MRI showed brain swelling and tests confirmed the diagnosis.  After a course of antibiotics, rest, etc. I was declared healthy and sent home.  YEAH!  It was a tough time for me, I was separated from my Ex, had an eight year old and was very scared at what the outcome might be.  Alas, all for naught.

So, fast forward — 2009 receive a Traumatic Brain Injury at the hands of the Ex and the bleeding on the brain that caused has further set me back, not to mention the increased nerve damage to my face, neck injury and residual side effects all this entails.  I’m a mess.  However, I came across a book not too long ago by Susannah Cahalan and her experience with Encephalitis.  Her book was great.  It recorded her time in the throws of some unknown disease through a hospital stay and the final diagnosis which has gone on to help countless others in their battles with this crazy disease.

9781451621372_custom-8472ac7519cd7bd76f6a81b979975ea9b0d66b83-s6-c10I’m amazed at her willingness to expose herself so fully to the world and show her vulnerabilities as she shares her experience with others, many of whom would use her experience to demand tests for the same problem and get results.  Her neurologist, who is one of the top in his field, even after she had a diagnosis in hand, had never even heard of it and had essentially written her off as a detoxing drunk.

This book proved to me, once again, that DOCTORS ARE HUMAN, TOO!!!  They make mistakes.  They don’t know everything.  Something I had been saying for years; but no one was listening.  I sometimes wonder if the overload of patients, under staffing of  hospitals, insurance companies pushing people out of long hospital stays and the lack of good doctors and nurses is part of the problem.   I’ve seen too much in my nearly 45 years; but it is getting far worse.

I remember when my 8 year old sister was suffering terrible stomach cramps for over a month, crying in agony and after going to the hospital and pediatrician, the doctor told my parents that she had a mental problem because she was still sleeping with a teddy bear and needed to see a shrink.  My mother, God Bless her, told the doctor he was an a$$, took her records, x-rays and such to Westchester Medical (over an hour away from our  home).  She presented the history to the doctor THAT NIGHT, who took one look at the x-rays and said, “Ma’am, your daughter has an  intestinal blockage and if we don’t get this fixed, she could die!!!”  Mom’s know when their kids are truly sick and not faking illness.

Fast forward 3 years and this same doctor (yeah, I know — what was she thinking; but when in a small town) told her that my ear infections were all in my head, a plea on my part for attention!!!  Okay, jerk; but guess what, I STILL GET THEM!!!!  OMG, like I need attention now!!!  Turns out, due to my allergy/sinus issues, the infections keep draining into my ears and cause them to hurt.  Yeah, he should go back to medical school; but hey, he doesn’t care — he’s getting paid, right!

These instances were the beginning of my long love/hate relationship with doctors over the last 40 years.  I’ve seen doctors that care and ones who have prescribed me with medicines I’m allergic to 3 minutes after I tell them I’m allergic.  I’ve seen doctors who are more concerned about entering data into a computer than caring for me as a person.  I’ve been treated like a number and not a human being on countless ER and VA trips.  It hurts.  It’s wrong and no one can do a thing about it.

Susannah at least is getting the word out on this particular problem; but it is just one in a million we’ve got in this country alone.  Still, to this day, I feel like my brain IS on fire due to my mountain of injuries and pain.  I want to drill a hole in my head to relieve the pressure.  I don’t.  I know that is foolish; but it doesn’t make it any easier.

 

 

 

Lupus Awareness Month

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That’s right, May is Lupus Awareness month and let’s just say I have been miserable all month.  UGH!!!   I hurt so badly that I can’t even breath!!!!  For some reason, my right leg (ankle, knee, hip joint) are throbbing with pain.  My head is splitting in two and no amount of medication is helping me.  I feel like I’m next to death and I am exhausted.

There is so much we don’t know about this disease and so much that goes wrong.  One of my favorite places to visit on the net to get information and “talk” to fellow sufferers is http://www.butyoudontlooksick.com   It is a great source of information and understanding for those of us who suffer from this INVISIBLE DISABILITY!!!

This site is also the home of the “Spoon Theory” which helps some people to better understand what it feels like.  I have a friend who read it but still doesn’t get it.  I just think he’s too thick headed to understand or just doesn’t want to understand.  I slept for 8 hours last night, woke up for 2 hours, then went back to sleep for five more.  I’m trying to stay awake right now; but with my body working on overload, I’m sure I’ll be asleep sooner rather than later.

What is my body doing to me?  It’s on overload.  My body is on high alert, fighting off an enemy that doesn’t exist.  What is it fighting?  My body organs.  With no more infection inside, my cells have decided to fight off itself.  I’m exhausted all the time; because my body never truly rests.  All the time, my  body is fighting.  White cell count HIGH!   This has left my quality of life in the toilet.

There is something to smile about, though.  Lupus used to be an automatic death sentence, however; it isn’t necessarily one today.  With research and new medications, there may be a cure soon.  At this point, they can only give you things to help with the pain, maybe help with the inflammation and to ease your suffering a bit.  My bad luck is that I am allergic to narcotic pain relievers, so I only can take aspirin or  Aleve.  I can’t even take Motrin due to my allergy it.

I go outside and the photo sensitivity just kills me.  I LOVE living in Florida; but I hate what the sun does to me when I’m in a flare.  My head is hurting so badly that I’ve got my monitor brightness turned down and am sitting in the dark.  I’m mostly typing this with my eyes shut, since I learned to type as a teen.  I’m hurting so badly.  I want to cry; but I don’t have the energy and I know that it will just make the pain worse.  It is so bad I want to vomit from it.  I can’t take much more of this and yet, God keeps me here, so I know he has a plan for my life.  I sometimes wish he’d let me in on it.

This reminds me of a guest pastor who spoke at our church one day.  He told the congregation that if we’re still in pain, still in need of healing and God hasn’t helped us, that we’re not doing it right.  That we’re not sincere in our quest for healing.  I was really upset by this because he made me feel like I was not worthy and that is totally not what a pastor should do or say to those who look to him for guidance.  I was really happy our Pastor came back the next week.

Anyway, I’m gonna jet because I’ve reached the end of my endurance and hit the hay.   Thanks for taking the time to read this and try to understand a little more about invisible illnesses.

Tricare and the state of our healthcare system

So, as I retired veteran, I’m entitled to use the military insurance, Tricare.  I pay into it quarterly and it covers my son and I when we got to the doctors, hospital, etc.  Recently my son had his tonsils removed and out of almost $12,000 in medical bills, they covered only $2,000 of it.  Not much at all; but still, I guess it is better than nothing.  It is a shame; but as I already owe more money than I’ll ever see in this lifetime (unless of course, I win the lottery; which I don’t really see happening) I’m not all that worried.  It will get paid over time.

Right after my son’s surgery, I received a letter from Tricare telling me, that after all these years with them, that they are no longer going to service my area.  I have two choices:  Get other insurance OR move closer to a military installation where I can see an on base doctor.  WHAT???  First of all, I’m a disabled veteran and single mom.  I barely make ends meet each month.  I can’t afford to move and I certainly can’t afford to get insurance with an even higher premium than they offer.  I have no help paying these things from the EX who just ignores any attempt to collect 1/2 as per our divorce papers and I count myself lucky that the SOB pays child support at all.  Of course, this is an automatic deduction and he has no choice; but still, I’m all alone in this.

Apparently, this new Obamacare crap is ruining others with insurance.  Since I’m retired military, they shouldn’t be able to cut my military insurance, (GOVERNMENT INSURANCE) but they have.  They have cut us off like an infected limb and cast us into the trash.  How is this a help to the country when they’re making those of us who have government insurance and pay for it, go off and find our own insurance?  We already had a pretty good insurance, why are they throwing us to the wolves?  I can only imagine what it will be like for those who haven’t had insurance and will be penalized by the government for not having it or being able to afford it.  It sucks!!!

I’ve written my Congressman and we’ll see what that does, if anything.  I’ve been doing a lot of praying over this situation and am hoping for a miracle.  I’ve been screwed by the government’s healthcare system for the last 20 years and I don’t see an end in sight.  The VA Hospitals have improved slightly as time has gone by; but not by much.  I’ve seen doctors there who care more about marking time until retirement than patient care.  I’ve had doctors who prescribed me medications that I am allergic to and then give ME the stupid look when I didn’t take them and pharmacy didn’t give them to me.  I’ve had doctors get mad at me for giving them my opinion on how horribly they’re treated me.  I had two security guards get their jollies off by putting me in a room and giving me a “rub down” search that was as close to rape a person can get with their clothes on.  I’ve been told my records were missing and diagnosis’s have been misplaced.  I do not believe out government, which takes care of our veterans, will do any better with the rest of our country.

WAKE UP AMERICA!!!!  We’re zombie walking right into hell without even questioning authority.  The more we give over to the government to take care of things, the less freedom we have to do what we want.  What a crying shame.