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"Fibromyalgia & Chronic Pain LIFE Nov/Dec 2012, Issue 7 - Joomag" and recomendation of Phyllis Douglass

From Evernote:

Fibromyalgia & Chronic Pain LIFE Nov/Dec 2012, Issue 7 - Joomag Clipped from: http://www.joomag.com/magazine/fibromyalgia-chronic-pain-life-nov-dec-2012-i/0825237001352101160

I have not been very functional lately.  The pain has become too overwhelming. Today, at this moment, I am doing okay.  I have a combination of Lortab and something else in me that together I'm doing okay and was able to shower without too much pain.  First time in quite a while that a shower did not result in vomiting from pain.  The medications have me sort of high/stoned.  Whatever. It is allowing me to function at this time and whatever allows me to do that is what I need. I'm still in pain but it's much easier to deal with right now than usual because of the pain relieving qualities of a gift. This is giving me the ability to function well enough to look for more permanent and healthier ways to deal with the chronic pain that is so often overwhelming.

I have recently read this online magazine which I have linked. I learned a few things from these articles.  I am trying to research ways to help myself.  

On another note, I had a friend, who is a shaman, volunteer to come over to my messy apartment last week and help me out.  On Monday, December 17, 2012, Phyllis Douglass came over with her table and did some energy healing.  She then helped me even more by cleaning my kitchen.  I do not completely understand what it is she does but I do feel very different and better after she has done what she does.  I have a difficult time explaining the feelings and experiences but it is an almost completely positive thing with some confusion at times. I know her from the spiritual meditation group that she ran on a specific evening once or  twice a month at Village Book shop in Glendora. I highly recommend Phyllis and all that she does.  There are places to find her online. 

• ( http://www.phyllisdouglass.com , http://www.equilibriumfitness.com)

 I am not paid to endorse her, in fact she does not even know about this blog yet. I will be sending her the link and if she does not like this post I will be editing it. I am recommending her because she does good work and is an amazing person.  She is also a very talented musician and owner of a Pilates studio.  She plays the healing bowls and I have been to one of her concerts and can recommend that as well. Check out her websites to learn more and please consider using her services if you can. It is well worth it.

Note: This post is being sent from Evernote through email to post on to the blog.  This is my first experimentation with this method of posting so bear with any issues.  I am new to the Evernote program but am finding it useful. 

Too miserable

Feeling completely hopeless.  Hurts so bad to even use the computer.  Spend half the time freezing cuz hurt too bad to even pull the blanket up off the floor where it fell.
Got papers from housing authority i can't figure out and thats the sign that the inspectin is coming.  i cant clean my apartment.  i cant even make myself some crystal light cuz i cant lift pitcher pain so bad so now i fear i'm gonna lose my apartment.  i'm losing all pieces of independence.  i cant drive anymore.  i cant shower.  i havent been able to change clothes in afew days.  losing everything to the damn pain.  just want to die. cant ask for help because i've asked too much from everyone already. i'm alone and hurting so bad i cant deal

Requesting info from Fibromyalgia Network

On the Fibromyalgia Network website they have the following information.

A provider and group leader listing for your state can be obtained by sending us a self-addressed envelope with first-class postage (business size). Please include a note that you are requesting a doctor referral list and mail it to:

Fibromyalgia Network
PO Box 31750
Tucson, AZ 85751-1750

I have put my note and S.A.S.E. together asking for any information that they can send me. I will put it into the mail box hopefully today if I can get myself together enough to get outside and walk to the my mail box (which is some distance from my apartment).

Just today two more people have suggested that I try medical marijuana. One of these people was a woman who I would never have expected to make that suggestion. I think I do want to get a medical marijuana license but I do not have the funding to do so right now. I have lost count of how many people have made this suggestion to me. I have tried smoking it with a friend recently who has a license and tried a couple of “edibles”. It does help. The two forms produce different results but both are helpful in their own way.

This hurts like hell

Everything hurts.  Always. Some days some things hurt more than others. It is always hell.

 There are things I just cannot do, at least not on my own.  Does not mean I am not trying.  It means the pain is crippling me. I work really hard.  Everything is hard.  Simple tasks like showering can be so difficult that some days it just cannot happen at all. I am not just saying I hurt to get attention.  I do not want that kind of attention.  I want to feel better. I want to be able to do normal things. I want to be able to drive, to go places, to enjoy myself. I want to be able to do things that I should be able to do.  I want to be able to enjoy things.

 I have reached a point where the average pain level are on the upper portion of the pain scale. I never get to be in the smiley faces section anymore.  If I'm lucky I can reach the "Nagging pain uncomfortable troublesome" level with help from drugs or whatever but most of the time I'm in the "Miserable Distressing" or "Intense, Dreadful, Horrible" portions of the chart with moments reaching "Worst Pain Possible".  This is no way to live.

 Just because you can not see my pain does not mean I do not hurt. It's not just a bad day, it's a bad life.  I wish that I could get out more and I wish I could keep a more positive attitude.  This does not pass.  It is jut not that simple.  I am in so much pain that the world gets drowned out by the pain.  I get lost in the pain.  It is not all in my head.  It is not nice not going to work.  It isn't the same as having a day off or a vacation time.  This is  different.  This is misery.  I am not physically and mentally able to work. It is hell.  I need to be able to do things.  It is depressing and frustrating to be overwhelmed with the pain, with no way out.

I am trying.  I am not just sitting at home doing nothing because I do not want to do anything.  I want to do stuff.  I try to do things but the pain gets worse and worse no matter what I do.  It may seem like I give up easy but it's not easy.  When the simplest tasks are difficult the point of being fed up comes quickly.  Yes I quit sooner than you but that's because it took me ten times more energy to even stand up out of the chair than it did for you.  It made me feel like I am going to vomit from the pain of doing something as simple as washing my hair. You probably wash your hair without even giving it much thought. To me a shower means extreme pain and several hours of complete misery as a result.  To you a shower is just one of those tasks you do with little thought.  It is just a normal part of the day. You shower, you dress, and you get on with your day.  I have to prepare myself for showering then I have to endure the shower, then I have to recover from the shower and recover from getting dressed. I'm not crazy, I am in pain.  It's not all in my head.  It is in my body.  Yes, I am depressed but I do not hurt because I am depressed.  I am depressed because my functioning is extremely limited by the pain. Psych meds are not going to solve this.  I've been down that route.  What I need is pain management! If I could reduce the pain and improve my functioning I would not be so depressed and crazy!

I can not do this on my own.  I need help and I cannot seem to find any real help. I've been searching. Scouring the internet.  Begging.  Praying.  I do not know where to turn. 

Til I Reach The Light

So I've done lots of searching online for help and getting more and more frustrated and hopeless. All the sites are basically the same thing. They say make changes. They list the drugs that are used. They talk about diet and exercise and sleep being important. The problem is there is no HOW. I do not know HOW to change my diet and exercise. I do not know how to change my lifestyle. I need specifics. I need step by step. I need someone to help me. I've been told many times that only I can change my life. Well that is a problem. I can't do this alone. It is too overwhelming. I am not strong or smart enough for this challenge.

 
Here's one of the many, many articles that I have read. This one from Ability Magazine called “Ouch Relief for Fibromyalgia” had one sentence that actually stuck with me.

“Though some might discount the feelings of one with fibromyalgia and dismiss the pain as being “all in one’s head,” the truth is that all pain is in our heads because our brains are where we register the sensation of pain.”

 

I also found a song and then bought it from itunes. I had some funds still in my itunes account. The song is called “Till I Reach the Light” which is by Chris and Lolly Swicegood and on Chris's album “Evermore.” The website, www.fibromyalgia.com, I found it on says “His album "Evermore" is dedicated to those who suffer fibromyalgia as Chris and Lolly became more and more aware of how many people, young and old, suffer daily from this condition. Their song "Till I reach the light" reflects the suffering as only artists can express--the struggle of the fibromyalgia patient.”

The song can be heard on the page of the article about it as well as on his myspace.

I could not find the lyrics online anywhere. Part of it appears to be in French. I want to get my hands on the full lyrics/translation. I tried typing them up myself, a little at a time with several listens to the song.

Till I Reach The Sky

By Chris and Lolly Swicegood

[Chris]

1, 2, 3....

Hey sister I hear you're not feeling so well

My brother told me recently you fell ill

Now my mind it aches

And my heart it breaks

And all I can do is hold on

[Lolly]

Something got taken from me

Oh, can't you see?

Like a thief in the night

It just ain't right

You can't tell by first sight

But I'll win the fight

I'll find my way through this darkness

Til I reach the light

[Chris]

Mo.....

...[french?]....

Now all we can do is hold on

[Lolly]

Something got taken from me

Oh can't you see

Like a thief in the night

It just ain't right

You can't tell by first sight

But I'll win the fight

I'll find my way through this darkness

Til I reach the light

There's got to be a way to leave this pain behind

My God, it's taken so much,

Feel I'm losing my mind

Oh please help me doctor

Can you help heal my soul?

Can you help ease my pain

And again make me whole

'Cuz Something got taken from me

Oh now can't you see

Like a thief in the night

It just ain't right

And you can't tell by first sight

But I'll win the fight

I'll find my way through this darkness

Til I reach the light

I'll find my way through this darkness

Till I reach the light

Till I reach the light

Till I reach the light

Going to try to blog

I am going to try to start blogging again. Probably not daily. It hurts too much to type. At least once or twice a week though maybe I will post something. But I am questioning that. It might be better if I disappear from the internet. The internet is the only contact I have with anyone really now so if I can disappear from online then no one will have to deal with me anymore. No one should have to deal with me. I am harmful. The negative vibrations I put off into the universe are harmful to everyone. The best thing I could do for the world was to cease to exist. I wish I knew how. I cannot end my life. I cannot end my pain. I am trapped. I have lost hope. I am torn between the loneliness and the need to protect others.