Being defined by who you are rather than by your illness, pain, limitations and medications

[Guest guest]

Hi,

I started this email to share about meds I think are helping me with

cfs/me/lyme/pain/etc. Then all these words came pouring out of my soul.

I share them with you in peace, empathy and hopefulness.

So here is the email, the exact way it came out. Thank you for sharing and for

being kind.

Here goes:

I think the Valtrex is helping me with lessening fatigue, pain and brain fog.

I'm starting ivig infusion and have hope I will feel better. For the Lyme I'm

now on biaxin with vancocin (prevent c diff). Did iv therapy before.

I have oxy, vicodin, tylenol with cod, xanax, valium, klonopin, etc. but I found

the more I took, the more I needed for pain and the resulting increased anxiety

and depression.

My pain was getting worse and I rarely left my house. Plus I had horrible side

effects, both mental and physical.

In the hospital with diladid (sp?), I developed worsening restless legs. I

wanted to crawl out of my skin. The depression was harrowing.

Pain from Lyme, cfs, fibro, ddd, and an alphabet soup of autoimmune diseases

cause random, intense pain with disabling fatigue.

What helped me the most was/is: botox in my neck, shoulders and face; Physical

therapy; and floating on a pool noodle in a warm pool. Massotherapy (deep

tissue that hurt like heck) worked wonders, as did accupuncture and biofeedback.

In the thick of mind boggling pain I didn't see the mess the pain meds were

making out of me. Opiods, muscle relaxers, anxiety meds, other pain

meds..sheesh- every doctor I saw gasped when looking at my list of meds!

Yet I was desensitized to it.

My family was so sick of hearing me complain about being tired and in pain

(their actions screamed it, even though they rarely put words to their

frustration). Our whole life was about my illness, doctors, tests, meds and

everything I couldn't do.

I saw everyone else as ignorant and annoying for making me suffer and not

understanding.

In hindsight I see that my default, unintended focus was on me defining myself

by all my diseases and pain I had/have.

I was making myself sicker, but anyone telling me that got an earful of

not-so-nice scorn. I was inadvertently waiting and prompting being offended.

How dare anyone question, negate, or give a less than front row seat to my

illnesses and pain. Even though I didn't realize it then or sometimes even now!

I couldn't see that my focus on my pain was intensifying it tenfold and making

me and everyone else miserable, which increased stress and intensified my pain

even more. My pain was and is real. My intense, unknowing focus on it turned up

the volume.

Forgive the mispellings, please. Splitting migraines, rock hard muscles,

screaming bones, crushing chest pain, pleurisy, coscochondritis,

superventricular tachacardia, kidney stones, interstitial cystitis, ibs, POTS,,

pcos, adenymiosis (sp?), GERD,asthma, circulation problems that felt like pin

pricks and turned my feet and hands a deep red then purple, tear-your-skin off

itching, mood swings, loss of libido, twitching throughout my body, inflammation

in my hands that made writing/jar opening or any movement feel like I had

burning cement in my hands, inner ear fluid and infections, syncope, ongoing,

heavy menstruation lasting months, painful ovarian cysts, bowel blockage,

horrible thrush and my body over run with yeast (skins, nose, etc.) tmj, strep

throat feeling sore throats every day, painful and swollen lymph nodes

throughout my body, swelling that made moving painful and made my skin hot and

feel ready to bust open, skin rashes and boils, loss of chunks hair, bowel and

bladder control problems, muscle weakness, kidney stones and infections,

ongoing boughts of mrsa, pneumonia, hair, eyebrows and lashes falling out,

constant ringing in my ears, development of a goiter that made swallowing hard,

fibrocystic breasts, crippling back pain from my discs degenerating and. Being

out of place, gallstones that lead to

Removal of gallbladder and tonsils (as an adult), night sweats, fevers, fast

paced weight gain and loss, burning skin that felt like I was wrapped in a

full-body, over inflated blood pressure cuff, electrical like zaps of pain

shooting down my back, ice-pick migraines, nausea, chemical sensitivity that

caused intense reactions of body welts, etc, and other random stabbing and

burning pain and infection that all got way worse as pain meds increased and at

the onset of IV antibiotic treatment.

The 6 weeks of iv antibiotic really helped! Even though it is a slow recovery

with many days of pain.

I'm on oral antibiotics now with the valtres and a host of other meds and

supplements.

Cutting WAY back and then stopping daily opiod pain meds was a Godsend. I was

never on high does or multiple ones at the same time so I didn't need

hospitalized to detox. Anyone on high doses would need to talk to their doctor

first.

When I started reading about placebo research results and the law of

attraction, I realized that this " central sensitivity syndrome " of REAL and

intense pain was better managed and lessened without scheduled pain meds.

Anytime anyone else suggested this approach I got really angry at them for

assuming I was lazy, crazy or both. I knew my body and whoever said that junk

would cry like a newly birthed baby if they had to endure this every doggone

day!

I took nearly anything and everything anyone said or wrote as a personal insult

and I didn't even see it!

After getting Louise Hay and Wayne Dyer cds and dvds from the library (Along

with Zig Zigler on his struggle with a traumatic brain injury that took his life

gifts and talents).

I'm starting to try focusing on happiness and not allowing my pain and fatigue

to drive my emotions.

Joyce Meyer (sp?) Has some great cds and dvds on this!

I'm still working on this, as unlearning nearly 30 years of living and being the

debilitating fatigue, pain and illnesses I have is a long, ongoing process.

Whether the IV antibiotics cured enough of the pain to allow me to cut way back

on opiods, the prescription pain meds and otc pain meds, or if it was me just

making up my mind to try really hard not to let these illnesses rule who I am..

I don't know. .

I was tired of my illnesses robbing my kids of a mom,, my husband of a wife, and

me of a life by focusing on trying to take back my power and refusing to give my

pain and illnesses blanket coverage and snuffing of my life.

Baby steps I've started the last month or so seem to be helping.

So, I thought I would share what is helping with the hope that something might

help you.

I told my therapist about all the junk I deal with in having these illnesses and

said how it was a constant fight with everyone, but that I knew I needed to keep

at it.

He said, " how's your way of going about this working out? "

That stopped me cold because my way was creating short term fixes and long time

agony. Always a crisis. My inner self made up of whatever junk I was going

through at the time.

Clearly I needed a different approach.

Well here are some things working for me:

- cutting way back on any pain meds and using massotherapy, physical therapy,

botox in my neck, shoulders and face, water therapy, biofeedback, cognitive

therapy, meditating with deep breathing and listening to library cds and dvds on

healing my body, mind and spirit.

-- sitting in the sun a tiny bit daily or doing 7 minutes in a tanning bed (here

Fiesta offers 10 sessions for $25)just to ward off SAD and help clear my skin

sores. Great results!

-drinking tons of water (12+ glasses a day)

-cutting back on sugar and carbs

-eliminating soda (other than club soda with no flavor, sodium, etc)

-supplements of probiotics, vitamins, and other healthy herbs

-lots of sleep (18 plus hours of sleep/naps)-- without guilt-- that usually

allows me to get out of the house

-a heart to heart talk with my family about what I experience and asking them to

please support me as I boot my pain and illness from center stage of owning my

life.

-talking on the phone with a friend at least once daily about nothing related to

my pain or illness.

When friends ask about my illness, I just say I'm not talking about it anymore

because I want to hear about the good going on in their world.

-going to church weekly and attending a 12-week church group for people who are

overwhelmed-- that is like a 12 step program using the FREEDOM principle

-joining a weekly one-hour women's group studying Beth 's " It's Tough Being

a Woman " focus on Esther.

-repeating Louise Hay affirmations (Power Thought cards) twice daily

-mentally saying stop to every negative thought and replacing it with a thought

of something that relaxes me (for me it is thoughts of the ocean and sunshine).

-refusing to engage in discussing my maladies with friends, family or others

(except my doctors).

For me, talking about it gives it more power and breaks me down.

-finding a simple way I can help others that doesn't involve my illness (tons of

nonprofits have one time or ongoing volunteer opportunities suitable for people

with most any kind of disability).

-changing the subject--When people ask where I work, I say I'm recovering from a

chronic illness. Then I change the subject.

If they ask more, I say I would rather hear about their life joys and share mine

(we all have some joy)

-eliminating or reducing contact with negative people. It's poison that I think

makes me sicker. When people gossip or are negative, I work hard to say I'm

choosing to focus on the good and I don't engage in gossip or bitching or listen

to someone who does it constantly (like I've done complaining for 30+ years).

-realizing the world I experience as being full of assholes is a reflection of

how I feel and come across.

I finally realized my pain makes me demanding, disrespectful and self-centered.

My pain is real, but me being an asshole just gives the negative more power. I

stay aware of this and try to find good.

-joining a library book club, an organization (no money involved for many) and

surrounding myself with upbeat, positive people who I meet as a person, rather

than as an illness.

(Note: At this point in my email I switched over to using " you " instead of I)

Say nothing about your illness to new people you meet. This gives you a break to

be the wonderful person your pain has held hostage.

-vow to do everything in your power to limit talking about your illness or

writing about it or constantly reading about others illnesses. Try to go a whole

day without any mention at all.

-journal your blessings and your frustrations with focus on de-activating your

default of mentally being overwhelmed with pain and illness.

-if you believe in God, consider praying for guidance and peace. Ask to be an

instrument of His peace then spend quiet time open to His prompts.

-spend quality time with your kids. I help my youngest son from my bed. We play

Farkle on my bed, too. It is fun, simple and easy. We color in coloring books

and read, too. All while I'm laying in bed.

-try to shower and get dressed daily. I can't do this daily yet, but when I do I

feel so much better.

-get out of your room and house, even if just sitting in a chair outside your

front door. I've stayed in my room for weeks and it made me sicker and more

depressed.

Small, baby steps once a day make me feel worthwhile as a person, rather than

angry at my pain and diseases.

-brush and floss at least once daily, even if it means you get up to brush and

go right back to bed.

-try to get friends or family to help get your living space de-cluttered

(freecycle is a great way), organized, simplified and clean--some people qualify

for help with these tasks through area agencies.

-wear clean clothes after your shower. I find it crazy, amazing how a good scrub

and fresh clothes gives me peace.

-get a lip balm. I love Carmex. Such a relaxing feeling have my dry, chapped,

skin-flaked lips lathered with soothing Carmex.

-write letters to people you appreciate (past and present people in your life)

thanking them for specific things you admired and how knowing them helped you.

Or speak into a tape recorder and send the tape. Make no mention of your illness

or pain.

-fake it til you make it. Again, the Law of Attraction. Act like a healthy

person as often as possible and view your extended sleep or breaks as refreshing

naps and rejuvenation breaks, even if they aren't.

-rather than say you hope to be healthy speak a mantra many times daily looking

into a mirror if possible saying, " I love you (insert name). I am healthy and

happy and people love me. My income is every increasing. Everything in my world

is good " Feels and sounds corny, but do it consistently for a couple months and

you will be shocked at how positive your life becomes-even with the pain and

illness.

-consider borrowing relaxation cds with subliminal positive affirmations from

the library.

I find that exercising my mind (with examples mentioned and/or other)helps cut

down on my negative self badgering that bludgeons me with what a burden my

illness and pain makes me.

I now realize I " cannot afford the luxury of a negative thought.I have bad days,

but reading affirmations, reading positive journal entries, writing, and being

kin d to myself go a long way toward my spirit being uplifted, even with pain

and fatigue.

I limited my listservs for diseases and pain because all that discussing just

made me sad, overwhelmed and miserable.

I joined listservs with positive daily messages of hope, love and

encouragement.Eating healthy has done wonders, as has accepting my illness and

pain rather than cloaking myself with it. I try to give it no time in my mind.

I'm working on dousing the frustration and bitterness I fell about missing out

and I focus on finding small things I can do that bring joy.

I take one day at a time trusting in God, while still keeping the focus on me

working as if everything depends on me.

I'm learning planning makes my life so much easier. I carry a noyebook with me

to capture things I want to remember or do.

I pet my cats and my 120 hea slows to normal. Same with relaxation and deep

breathing.

I do all I can knowing that all is (not will be) well. Easy to say, tough to do.

On a scale 1 to 10 with 10 being peaceful and accepting like Jesus, I'm about a

2. Rather that beat myself up, I accept and try not to give my illness or pain

voice or position in my mind. I find I begin thinking more clearly when I look

around to find and appreciate positives (sunshine, soothing rain, flowers and

all of nature in its simple, renewing wonder.

I'm a work in progress. We all are. Please don't let negative or nasty people or

your illness and pain define you by refusing to let it rob you of the wonderful

soul you have.

Remember, in the Tortoise and the hare " The tortoise always wins.Positive, slow,

steady, accepting, kind to yourself and always knowing you can only control

yourself. You can't change anyone, so focus on the good you can bring to your

heart, irregardless of others.

We all know someone is going to dislike us for possibly stuff we didn't do or

say. Forget it. Ignore it. Be independent of the opinion of others while

striving to always be kind and respectful. Don't engage jackasses. If you're in

a relationship with a person who brings you down, seek a therapist to work

through your options.

Finding a good therapist, I think, is challenging. More so than finding a life

mate. It is ok to go a couple times, or even once, and realize it isn't a good

fit. Keep trying to find a good fit knowing that an effective therapist is going

to challenge you to look at, understand and adjust habits that cause you angst.

Forgive everything and let go. Horrible things have happened to most of us. Lots

of anger, hurt, resentment. That's like drinking poison and expecting whoever

wronged you to croak.

Forgive and be rid of those toxic emotions. The point of power is in this

moment. Refuse to allow the past (even yesterday) to steal today.

What happened in the past is atrocious, but we can do nothing g about it now.

Except vow to remove it once and for all and vanquish it so we can get to living

in the now with peace and love.

We will still have less than good days; but we give those days no power to

define us by our pain, illness, medication or limitation.

Peace and Love,

Lori

[Guest guest]

Hi Lori,

Sounds like you have really been through a lot. I am in a couple of groups that

are facing many of the same challenges. We have tried a lot of the things you

are doing, and found them helpful. As you mentioned thrush, the antibiotics

will cause more problems that way. You can feel better with antibiotics because

they stop your detoxing, and detoxing can be unpleasant, but necessary. So

many of our symptoms are just our body trying to get rid of a toxin. Cutting

down more on sugar and starches will help you though avoid the thrush, and help

in many other ways. I may have missed it, but if you are not increasing

saturated fats, you need to start. If you google " benefits of saturated fat "

You will see the intense need you have for them, as they are very healing. You

will see plenty of articles too, on how they are not to be feared. I am not

talking about vegetable fats, and trans fats, as they are harmful. Cholesterol

is very necessary if you suffer from depression. Did any of those persons you

mentioned use a ketogenic diet? It can be useful for brain injuries, and many

other conditions. A lot of my health problems went away when I went on the

diet,and it has helped many others. I have not faced all you have mentioned, but

there is hope for you to improve further by changing your diet more. I went on

the diet because I heard it can relieve chronic pain, and found that it helped

me in so many other ways, that I was amazed. You will need some help and

support, but there are many of us who will help and will not ask for anything in

return, only that you will also be willing to learn more, and make gradual

changes as you are able.

Best wishes,

C.

> Lori wrote:

> I started this email to share about meds I think are helping me with

cfs/me/lyme/pain/etc. Then all these words came pouring out of my soul.

[Guest guest]

> wrote:

> As you mentioned thrush, the antibiotics will cause more problems that way.

You can feel better with antibiotics because they stop your detoxing, and

detoxing can be unpleasant, but necessary. So many of our symptoms are just

our body trying to get rid of a toxin. Cutting down more on sugar and starches

will help you though avoid the thrush, and help in many other ways.

Lori,

I get thrush, which is a yeast and the cracks in the side of my mouth and the

blisters are always a sign of the thrush coming. Last year I had this two times

and have this in the past.

The best book for this is " The Yeast Connection " and I had a doctor ten years

ago do a blood test for yeast and it had traveled to my blood and bowel.

If you are not eating yogurt everyday and taking acidolophus which counteracts

yeast and go on a yeast diet which does not allow anything white if you can

remember that. This has been proven and is almost the same as an anti

inflammatory diet which causes pain and sure that is what address.

Research has shown that yeast causes depression so that is what may of your

problems come from. I would start with Yeast Diet. There is a mouth wash for

thrush and Walgreens has it, it about eight dollars and worth or ask your doctor

for prescription rinse that they give aids patient.

These are the best websites and support the book I read years ago. I would not

be overwhelmed with other things but start with this first and instructions from

the yeast connection as you know you have thrush. Thrush is a sign of immune

depression also and you have to keep you body acidic.

You can e mail me anytime as I have dealt with this for them I was put pn

voricoinazole last time but nystatin has been around for fifty years and has low

side effects and I took it for three months and it knocked the yeast out since I

had it in my bowel and had spread to blood.

I was told to stay away from anything that was white, pickled (to include

nitrates in lunch meat and other preserved items). There is a phrase " feed your

yeast " that helps determine when your are in flare. I crave chocolate and that

is my body wanting sugar to help the yeast grow and I stay away from it.

Good Luck. Bennie

Here are the websites:

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