Welcome to my Medical Journey and Information Blog

This blog is my about my medical journey with some insightful information. I will share what my condition is, the process I'm in with the medical society and how it's all effecting my life. My hope is that it passes off good information to all who reads it.

I guarantee you will come away with some insightful information.

You can also be cheered up in my joke section. And maybe you might even be comforted by some of my poems, even the ridiculous ones.

Saturday, May 29, 2010

Thursday, May 27, 2010

Whispering Winds Calling

Feelings of uselessness

For the past couple of months I have been battling with my health from a backlash of collapsing.  There is no way of knowing when and how you will be struck down in your health. 

Today, like so many, I have had another headache that pierced into me and puts me in bed.  I know it's not just an ordinary headache, but one that starts in the base of my head and spreads down my spine, then into my muscles.  I rest and fall asleep, that's all I can do.  What a useless existance.

I was realizing today that there is nothing I can do to go to work.  I can come up with some alternative ideas of work out of my home, but I can't even make plans of anything consistant.  There are obsticles in every direction.  I am so tired of this.  My nerves are wrung out from these headaches and inflammation.  Yes, it effects the nerves, not in a psychological way, but in a physical way.  If you've ever experienced a severe allergy reaction, you will understand how it effects the nerves.  I hate it.  I can't handle listening to my little dog bark, everything has to be quiet in the house. 

This moment will pass when my system levels out again, but then I know this will happen again.  I wish there was a miracle cure.  People try to give their imput, but they are not living in this health dilema.  People think there's a simple solution to the problem... like take some vitamins (it's a neurological illness not a lack of vitamins), or have faith, hope, be positive ( after trying all the above you begin to wonder about those options when you see no results... it's never ending and hopeless really), or exercise (deadly to the system, it causes you to relapse), or just go out and do something that will make you happy (that costs MONEY, for gas, etc, which I don't have).  I could go on. 

The reality is, this illness wipes out your life.  For some they are financially o.k. and for others they have their spouses.  After a couple of years of being at home you lose your social life and your resources of friends dwindle out.  People don't want to be around sick people or hear anything about it.  People want to be charmed, entertained and know that there's something in it for them.  I have nothing to give.  I feel useless.

When you feel useless and like you have no purpose anymore... what's the point to life.  I am struggling with holding onto what I have with the threat and reality of it all being taken away.  I have no strength to fight for what's left.  I am sick and tired.  That's a fact.  I have been battling with the insurance company since day one and I know it will be never ending.  When am I able to rest?  How can I relax?  Knowing my finances are always being threatened.  I have had my power and phone cut off and close to losing my home.  I have had some help that came just in the nick of time.  Wow.  Is this how I'm suppose to live now?  Always on the edge... this stresses me out.  Stress has been added to me since I've been ill.  Stress did not cause this.  Why in the hell would anybody want to continue on in this kind of existance.

Today I wonder what my life is for.  How can I not have feelings of uselessness? What do I have to hope for or look forward to.  My next meal, my next paid bill, some extra money for some small luxury.  Isn't that exciting. 

I have never desired to play the lottery, but it's interesting how a persons mind changes when they're financially in ruin.  If my finances were secure, then I could at least relax and rest properly.  It wouldn't take the illness away, but it would be a bit more bareable and I could at least look forward to doing somethings that I couldn't do otherwise.  People don't realize how very fortunate they are that they can work or walk a distance or plan their days knowing they can commit to it.

I had someone say to me, a pastors wife, who had finished complaining about how they don't have enough money to meet their bills... (they have a very nice home, with very nice furniture and two newer vehicles with payments and their children are all in activities and they drive them out of town to play their games and they have cable, etc...)  and complaining that she needs to find work,  "I know a man who has losts of money, but he's ill and can't enjoy any of it. How difficult for him and his wife."  Then she continued, "If I had a choice I would chose to be poor rather than sick.  At least I could still work."  I said to her,  "The rich man can afford to be sick and the poor person can at least still have the ability to work."   As for me... I am neither rich nor have the ability to work.

I confess I was annoyed at our visit because when she came into my living room she asked me about my lights that were turned on. ??  She knew I had my power previously cut off because I couldn't meet the bill.  With the power cut off the furnace wouldn't work either and this caused me to collapse because my system can't take the cold.  I asked her what she ment when she pointed to my lights.  She stumbled about with her answer, so I came out with it.  I said, "You mean am I paying the bill?"  She was wondering why I had my lights on if I was having difficulty paying my bill?  I was irked by her ignorant question about my power.  I should have turned off the lights and had a visit in the dark with her.  I wonder what she would have thought then?  How stupid! It's night... the lights need to be turned on.  Maybe I should have lit some candles.  The pathetic thing is that people don't want to see you have any pleasure of any kind and THEY watch how you're spending your money.  I'm not taking luxuries over necessities!

That kind of  Christian attitude is truly alarming.  When people see you down and out, they expect to keep seeing you there.  The fact is I can't change what's happened to my life physically or finacially.  I am barely coping.  And to top it off, you get people, who are well and not financially stressed, giving you narrow minded advice for your situation that does no good and with knowing very little about your condition.  Can you tell I'm venting...  Yes, it's been a bad day.  And I'm allowed to have these once in a while.  No, people don't always turn positive in a dim situation.  When you're down, you are down and that's just how you cope sometimes.

On the upside of things I must say, and I reflect on this, I had a brother and sister in Christ give me a helping hand a couple of times that just blew me away.  They didn't just speak the word... they did the word.  The bible says, "Don't just be hearers of the word, but be doers."  Many times Christians say, "I'll pray for you."  I find that almost condesending.  That's their easy way out of saying... I don't want to commit to helping you in any real or material way, so I'll just pray... it doesn't cost me anything.  I have seen Christians who have very little give more than those Christians who have more than enough for themselves.  To each his own, but that is not true Christianity.  I could write a book on the subject.

Well, that's all I have to say for now.  I needed to vent.  It's been a bad day and I need to lay down again. Who really wants to hear it.  This blog is not being read, so ... oh, well, just as well.

Ya... clearly I'm down and out today.  Tomorrow is another day.  Maybe I'll have some good news.  Maybe I'll hear something that will lift my spirit.  Maybe I'll get some relief.  Maybe tomorrow I won't feel so useless.

Thursday, May 6, 2010

It's All About M.E.

I'm putting up videos It's All About M.E. explaining Myalgic Encephalomyelitis, with a little fun added to it.  Check out my links to view.  Keep checking back to see if I've added some more.

Monday, May 3, 2010

Myalgic Encephalomyelitis and Symptoms

What is M.E.?

  • Myalgic Encephalomyelitis is a multi-system neurological disease, recognized by the World Health Organization (WHO).  It effects multi-systems in the body.  Neurological System; Immune System; Endocrine System.
  • M.E. has similarities to multiple sclerosis, Lupus and Polio (poliomyelitis)
  • M.E. is the result which occurs to the CNS by way of a virus.
  • Researchers around the world are working on a diagnostic test and a cure.  Researchers lack funding and need more support.  This is imperative since millions are effected around the world with M.E.
  • Many doctors do not even know what M.E. is.  And those that have some knowledge do not have accurate knowledge.  They liken it to Chronic Fatigue Syndrom (CFS), but the two are not synonymous.  Extreme fatigue is only one symptom of M.E. 
  • More than 60 symptoms have been documented for M.E.
  • M.E. can also effect cognitive functions, cardiac, cardiovascular, metabolic, respiratory, hormonal, gastrointestinal and musculo-skeletal functions.  The body functions cannot maintain balance.
  • It can cause death
Dangers, Misconceptions, Triggers and Symptoms:
  • Misdiagnosis causes more harm when brushed off as psychological.  Anti-depressants do not aide in healing and is a misguided treatment.  See Sophia's story in my links. 
  • Advice by Physicians to exercise is dangerous, as over exertion can cause heart failure to an already compromised system.  Once you have a qualified doctor diagnose you check with your doctor about moderate exercise.
  • M.E. patients are not lazy or depressed people.  Although depression can set in, as is normal, for long term illness, added with a lack of understanding, lack of support and loss of hope for healing.
  • Walking or standing triggers the system to collapse.
  • Being in loud social settings, socializing by talking, laughing or listening can cause a relapse.
  • food sensitivities
  • cold sensitivity
  • headaches
  • dizziness/vertigo
  • paralysis (temporary)
  • neck, spine, lower back pain,
  • muscle pain, muscle spasms
  • temporal lobe and other types of seizures
  • light, sunlight, brightness, noise sensitivity
  • nausea
  • shortness of breathing
  • irregular blood pressure
  • heart muscle strain
  • respiratory difficulties
  • sore joints
  • extreme fatigue
  • brain fog
  • short term memory loss
  • cognitive dysfunction

Still In Bed

For the past week or longer I've been battling dizzy headaches, pain in my neck, spine, lower back to my feet and I feel pain in my heart like cramping almost.  I feel sick to my stomach periodically, which is par for the course when my head and spine are lite up.  Medication is not touching it. 

I have now been in bed for two days solid and off and on for the last week and a half.  I was taken to emergency by some friends almost a couple of weeks ago.  It was devastating.  I was having seizure type episodes, not able to speak for myself or move other than my muscle spasms.  The doctors in emerg. have no clue as to what M.E. is and treat me poorly. When I'm in this state I can't speak for myself and they think I can.  I never want to go to emerg. since they don't do anything for me there, unfortunately someone else brings me and I don't have a choice in the matter.  People panic when they see me in this collapsed state.  I just need to be put into bed and made comfortable while my system settles back and stabilizes. 

One neurologist suggested, reverse paralysis locked in syndrome. (I'll explain that in another blog, not tonight)   Now, we are checking out that avenue.  There are still tests that need to be done.  Some of which I know I will fail, like the stress test and the table tilt test.  I can't stand too long or walk too much before my heart feels like it's swelling up, my blood pressure rises and I collapse.  Setting up these tests all take so much time.  I am now awaiting to hear about getting an MRA and the others I just mentioned. 

Some of the doctors I've seen are medically ignorant, uneducated jerks!  Doctors don't keep current on medical information and often couldn't care less.  They want the $$ and the easy cases.  How about a doctor who truly has a heart for the profession, willing to work with a patient and do the research.  Fortunately I do have a decent doctor, but not in this area.  I had to go to the big city of Calgary.

The last few days have been frustrating laying here helplessly... thinking, thinking, thinking.  How exciting is that?  I have no energy and if I do anything in the house it wipes me back down, putting me 10 feet back... usually into bed.  Summer is coming and I want to go out and enjoy it.  I could feel that beautiful breeze through my window today.

I am waiting to get my wheelchair.  It's now in.   I have one I'm borrowing from red cross, but it's so heavy I can't pull it out of the car.  The new one I'm getting is lighter, but I have to pay $500.00 to get it.  It's partly paid for by a program, but I have to pay the other amount, which I don't have.  Oh, this is so frustrating.

It was income tax time and I spent the last of my money on that.  My son had to pay income tax and all his money is gone as well.  My son has done so much to help me out in so many ways.  I always feel so bad for him because he's so young and trying to get his life started, but he has me in this pathetic position. 

The food situation is pathetic right now.  There are no veggies, fruit, meat or potatoes left.  All I have now is a bun, some crackers, pretzels and one box of macaroni.  Gee, when you're ill this doesn't help.  Battling with insurance companies for your money is demeaning and exhausting.  I use to have a good paying job at the hospital.  Now I've been reduced to this...

Last fall was very sad.  We made it through by people helping at the most difficult times imaginable.  My animals starved for a few days, as we did also, through the fall and December.  I was just numb about the whole thing.  What can you do?  Cry, but that doesn't help.  It is what it is.  I've never asked anybody for anything, but there was always something that came through in the most difficult times.

My son told me his faith has grown in God even more as a result, because he saw how we would get a break through just in time,... every time.  He's such a beautiful young man and I love him to bits for his loyalty. 

I find myself these days thinking that I don't want to go out into public or social incase I collapse or start to not feel well.  You know people don't want to hear or deal with your physical burden.  I dont' want to deal with it, but I'm have to.  I get tired of explaining it to new people I meet.  If I social with them they need to know incase I collapse one day.  I am really hating this.  I feel so trapped by this dam illness!  So I will blog about it and that way I can vent off what I'm feeling and dealing with.  Then no one has to read it if they don't want to.

Oh, it's so late.  I'm still in pain and the advil and bonamine is not working.  Sleeping during the day has messed up my night sleep.  I'll watch another movie and see if that'll put me to sleep.

Monday, April 26, 2010

The next day...

This morning I'm feeling the pain in my body (head, neck, spine, lower back, feet, joints) and extremely fatigued.  My heart is feeling like it's cramping.  That's the only was I can explain it.

Last night, I went out to some friends for dinner.  I was a little reluctant since I was still recovering from having a collapse a few days earlier.  Days afer I have a collapse I get a headache, slight dizziness, and what feels like inflamation throughout from my head, neck, spine to my lower back and feet.  After I lay down for a while, when I get up, every joint feels stiff and my feet hurt?  Why this is I don't know, but it happens everytime.

I had rested partly through the day yesterday and then did some laundry.  I still felt run down. My battery was only half charged.   When I was asked to come over for dinner I really wanted to go, so I did.  I thought it would be a low key visit.  So I went, even though I still had a headache that was at the base of my neck/head.

Shorty after arriving I got visiting with a gal there and I listened to her adventures and just kept my talking mininal.  Even the listening was straining because you also offer expressions like smiling, laughter and interjections.  I could feel as the night was progressing so was my condition.  After a while my left arm jerked a few times, this is the first warning, I knew I needed to get going.  I was starting to zone out and knew if I pushed myself I would collapse again.

It's hard to get together with people when they don't understand or fully know what's wrong with you or even what to do.  It makes it hard to get to know new people, because they have to be at least aware of my conditon incase I collapse, so it doesn't freak them out.  But really nobody wants to hear about it, they just want to have a good time.  So even though you don't feel great you don't want to bust up the fun, so you just leave.

When my system starts to take me out, it makes it very difficult to socialize.  So you either stay in bed to recoup or you simply don't go out.  This could be weeks or even months.  When you're on a down time people begin to think it's depression.  This frustrates me more than anything.  I am not a depressed person, however, it does become a downer when you're house bound for a while and your social dies out.  That's pretty normal to feel.

If I'm feeling well I usually load up my day with all the things I need and want to do.  This illness has nothing to do with laziness or stress issues.  When the battery has no charge or very little there's not much you can do.  You have to wait for it to recharge.  My battery doesn't hold a charge very well.

If you go to The Humming Bird's website on M.E. it gives a good description on this illness.  Check it out in my links.

I'll talked about reverse paralysis locked in syndrome a bit later.  Something a neurologist mentioned to me, which is currently being investigated.  Just watch for this title.