A Major Announcement…

Ok, well maybe not a major announcement, but I’m back. Back, to letting my brain flow through these cold fingertips of mine. Back, at least for today. I have missed you and appreciate the messages of encouragement, wonder and care I got from some of my readers. Each letter strengthens my daily resolve.

 

I have no reason for stepping away from the blog…just as I have no reason for returning again. However, here I am. I wish I could relay tales of wonderment while I was away, but alas, it has been just like any other span of time encompassed in the last few years. Taking each day…each moment…for what it is. Dealing with the immediate and trying to look forward to the next.

 

The next hour…

The next day…

The next pain free moment…

The next quiet dinner with my wife…

The next…always waiting.

 

I have found that days have very little identification at the moment. One seems to bleed into another, into another. I am still working a few hours a week with my student, and have found it to be equally rewarding and exhausting. Equally challenging and educational. We are currently reading the book Ishmael by Daniel Quinn. I bought a copy myself so that I could read along and we could have deep discussions about the story, and meaning of the book. If you have not read this one, I might suggest it. I’m sure a trip to your local library may uncover and old copy. Very interesting perspective on life and where it may or may not be heading, all taught by the unlikeliest of characters.

 

Well, Friday is another big day for me. It’s new doctor day! (Typed in my most sarcastic thought) This will be Primary Doctor numero 5 in a three year period. That of course does not count all the other specialists and incompetents that I met along my journey. The last two moved from Oregon to Georgia. To Georgia!! Absolutely no disrespect to any Georgia Peaches that might be reading; but who moves from Oregon to Georgia? Better yet…who finds two doctors that decide to move from Oregon to Georgia….This guy!

 

So I have filled out my new patient paperwork, copied and delivered a small novel of medical records and reports (they can request the rest of the bookcase on their own) and delivered it all with sticky tabs and notes. Hopefully when I walk in the doctor will have an idea of why I am there, and won’t have to read the folder to know my name. In all fairness I did meet the new doctor very briefly when I went in for the paperwork, and felt a calm energy about her.

 

Now finding a doctor is rather interesting in my case. I don’t have, and haven’t had for awhile, ‘traditional insurance’. Therefore calling around and finding a good doctor is not all that easy. About a year ago my wife found a local Physician’s coop where we pay a monthly fee and then have a certain amount of visits a year, with my doctor it will be 9 a year after the initial visit. Then, when it comes to testing deals have been worked out with various labs for reduced costs…but still all costs to me. Each doctor has their own plan of visits, and varying prices for the initial cost. So finding the right doctor is like rolling the dice in Vegas. You go in with the knowledge you have and hope for the best.

 

So we will see where we go now on this journey of mine. Each season seems to bring a new road…or more correctly a new direction of the road. Seldom does it appear as a fork, allowing me to choose my way. It’s more like a spoon…dipping down and then climbing out the other side.

 

So for today I write, with no promises or expectations on tomorrow. The sun is shining; the weather is in the 70s and it’s my favorite month. I think my cane and I have a date for a path. A path I WILL choose.

 

May all of you have a pain free moment until we read again.

Advertisements

Me in 30

Yesterday, as I was catching up on some reading I came across this great blog 30 Things. It really came at a perfect time, as I was thinking about doing a piece regarding my illnesses beyond Fibro. I wanted to bring awareness that Fibromyalgia is just one illness, but as you see below, it is usually accompanied by other illnesses. It’s like a Fibro Posse. So I would like to give a shout out to Finding My Inner Courage for sharing this, and allowing me to grab it and run…jog…walk briskly walk slowly with it.

So now here is more info than you probably ever wanted to know about me.

1. The illnesses I live with are: Although I use Fibromyalgia as a, somewhat, generic term…here is a list of my illnesses.

And now in no particular order:

Pure hypercholesterolemia

Hypertriglyceridemia

Depression with anxiety

Irritable Bowl Syndrome

Fatty Liver

Osteoarthritis

Degenerative spondylosis

Degenerative Disc Disease

Low Back Pain

Thoracic/lumbosacral neuritis/radiculitis

Myalgia and myositis (fibromyalgia)

Nonallopathic lesion of cervical region

Nonallopathic lesion of thoracic region

Nonallopathic lesion of lumbar region

Nonallopathic lesion of sacral region

Nonallopathic lesion of lower extremities

Nonallopathic lesion of upper extremities

Nonallopathic lesion of rib cage

Herniated disk syndrome

Insomnia

Obstructive sleep apnea syndrome

Numbness

Shotty lymph nodes

So you might see now why I use Fibro as a generic term when talking to about my illness.

2. I was diagnosed with these in the year: official diagnosis for most came in March 2012.

3. But I have had symptoms since: IBS issues I can date back to the mid 90. Back issues have been spasming for about 10 years. Chronic fatigue has always been an issue. Fibro symptoms since 2010.

4. The biggest adjustment I’ve had to make is: learning to truly listen to the needs of my body, and make the necessary adjustments. Also, adjusting to mornings (my roughest part of day) and the pain that awakens me. Mornings are stoopid.

5. Most people assume: I am a healthy male in his 30s. Assumptions from strangers and acquaintances. Heck, my Starbucks peeps don’t know about my illness, and I see them everyday.

6. The hardest part about mornings are: My mornings! Being in one position for 10 minutes hurts…try 6-8 hours. I do not like mornings.

7. My favorite medical TV show is: Big Bang Theory. It may not be medical, but it makes me laugh out loud like no other show…and they say laughter is the best medicine. Your reality is all in the way you see things.

8. Gadget(s) I couldn’t live without is: my remote control, iPhone, computer, Xbox, coffee machine.

9. The hardest part about nights are: knowing that morning is next. Did I mention I hate mornings?

10. Each day I take __ pills & vitamins (No comments, pls): 5

11. Regarding alternative treatments: I have tried MANY. The best treatment, albeit short relief, is a hot soak. I found a wellness spa that has a fantastic outdoor jacuzzi. It’s perfect during the frigid cold to sit in a hot, steamy tub with the rain falling on your scalp.

12. If I had to choose between an invisible illness or visible I would choose: is there a difference? I would choose neither. That’s like be misunderstood or looked upon with pity.

13. Regarding working and career: I left full time work as a customer service rep in March 2011. I am working on a limited basis as a mentor/tutor for a young man with Aspergers.

14. People would be surprised to know: I have a chronic illness.

15. The hardest thing to accept about my new reality has been: Not being able to have the loving embrace of my wife when I need it the most. It just hurts too much some days.

16. Something I never thought I could do with my illness that I did was: Overcome the dispair and begin to have more hope.

17. The commercials about my illness: Suck! Let’s try more awareness for the actual illness, and not propoganda of side effects for profit.

18. Something I really miss doing since I was diagnosed is: Disc Golfing. Those that have followed me know the importance this has played, and continues to play, in my life and recovery.

19. It was really hard to have to give up: Disc golf, traveling, a pain-free life.

20. A new hobby I have taken up since my diagnosis is: Blogging. I have found that through writing I have been able to clear some of the darkness that has built up in my mind.

21. If I could have one day of feeling normal again I would: Just One Day

22. My illness has taught me: To listen to my body. It knows best what it needs to be strong.

23. Want to know a secret? I haven’t taken a prescribed medication, besides a very occasional vicodin, since about October. You know what? The pain is not much worse, but the side effects are not around. Just sayin’…

24. I love it when people: Show interest in learning more about Fibromyalgia, and my experiences with it.

25. My favorite quote that gets me through tough times is:

26. When someone is diagnosed with any type of medical condition I tell them: Document document document. You are your best advocate in this world. Don’t trust that what you are saying is being heard, be sure to have doctors document everything.

27. Something that has surprised me about living with chronic pain is: The lack of education there is about Fibromyalgia and other chronic illnesses.

28. The nicest thing someone did for me recently when I wasn’t feeling well was: I really appreciate the random message or text from friends sending me strength when I am having those days where I am struggling.

29. I want to get my journey out there because: I feel that I have a story to tell…and some of the writing prowess to tell it. People need to be more aware.

30. The fact that you read this list makes me feel: Appreciative. I had trouble reading through the whole thing myself. Truly though, if you are reading this…thank you. It’s because of you that I am writing. It’s because of you I am healing.

On a scale of 1 to 10…

20130405-180647.jpg

So on a scale of 1-10, how much do you hate the scale of 1-10?

 

**Reposting because WP decided to move it to a different date in my history…hopefully I fixed the problem.

I am sure that most of you are familiar with the above chart (or a variance of the chart). If you have not seen anything like this (maybe it’s just in the US), but this chart hangs in doctor’s offices and the question is typically asked “On a scale of 1 to 10, what’s your pain level?”

 

Really? On a scale of 1 to 10? I really can’t have a scale of 1-100? Maybe 1000? 10 just seems so small some days. And how do you truly answer the question? What exactly does an 8 feel like? I don’t always look at my own face when I am hurting, so I can’t compare it to the little face on the chart.

 

As someone with chronic pain, I find this chart to be ridiculous. I can understand it if you sprained an ankle and came in to have it examined, that might be a legitimate use of the chart. The pain at the very moment is probably the harshest, right after the accident. Someone who lives life at a 0, must certainly be able to judge their pain against their baseline pain level.

 

I don’t have a baseline pain level. Each minute, hour, day, month feels different. Hurts differently. Aches differently. Debilitates differently. So when I go to my doctor and they ask the question, I always have to pause, think, and come up with a number to identify my pain at that very moment. Some days I was a 2-3, other days an 8-9. There were times I was a 10, but a 4 by the afternoon appointment…then returning to a 7 in the evening. The only slice of information the doctors record, typically, is the 4.

 

The other issue I have with this technique is, I just don’t really know what it tells the medical staff besides how heavy of a pain killer one might need. If the patient is at a 10, then the doctor rushes to help take away the pain.

Vicodin, Percocet, Celebrex, Ultram, Demerol, Lorcet, Lortab, Percodanm, Morphine, Oxycodone.

 

You get the point, I hope. For someone in Chronic Pain, this chart is a joke. Doctor’s need to document the overall story of the pain and symptoms, not simply ask what our pain level is at that moment. I even has my disability lawyer ask me this question last week in preparing for my next step in the disability battle. I was not expecting to be asked that question by my lawyer, and still am not sure what that bit of information will do to help my case. Maybe the fact that I was at a 7 on 4/3 at noon will help me win my case. The judge will see that and it will all be cleared up. (last line dripping with sarcasm, in case the tone didn’t come through. Still waiting on the Sarcasm Font to be introduced.)

 

So until such time that the medical community comes of age and actually asks questions that are pertinent to what I am dealing with, I guess I will continue to take my numbers with me to doc appointments, ready to flash my pain when asked.

 

Here is my scale questionnaire for you:

On a scale of 1-10:

How badly do you want the pain to be a 0?

How cute of a couple are Mickey and Minnie Mouse?

How much wood could a woodchuck chuck if a woodchuck could chuck Fibro?

How many marathons have you run in the last 3 months?

How precious are kittens and puppies?

 

Most of us have numerous struggles, all wrapped up into one misunderstood body. Somehow we are expected to squish all of our experiences into one 30-60 minute conversation with our doctor. Think about this for a minute. There are 24 hours in a day…14440 minute in just one day. One day!! So a month works out to an average of 43,200 minutes. So for 43,200 minutes each month we have to deal with our pain and illness. Yet, we have 60 minutes, or 0.001% of our month, at the doctor to truly reflect what the other 99.999% of the month.

 

A piece of advice, take full advantage of the 0.001% of your time and tell the doctor as much as you can, AND make sure he/she is typing everything you say into the system. I personally submitted a letter from my Fibro Specialist which stated, clearly, that in my current state there is no possible way I would be able to work 40 hours a week, and be a contributing employee. Disability denied my claim stating that the 45 minute doctor visits did not back up the letter from my doctor. So please be sure that doctors are documenting thoroughly everything that is going on.

T Minus

5 days until my big disc golf adventure. Ack!!! Didn’t I just write the blog about how it was a few weeks away? What happened to the time? It’s sneaking up quickly on me. Still trying to figure out if I’m ready for this. If my body is ready for this. There is only one way to find out. Do it!! I know I will accomplish nothing by merely talking about it.

I thought I would give you a little sneak peek into the preparations for the event.

 

20130414-233027.jpg Here are the socks.

20130414-233039.jpg The shirt

20130414-233107.jpg A new crazy hat to keep my head cozy.

20130414-233124.jpg
And finally the pants that are about to be redesigned into knickers.

So this is getting real. And the nerves am apprehension are getting real. I have been practicing some here and there, putting between rain drops and throwing between storms. Here is the outlook for the weekend.

20130415-072502.jpg

Now I live in Oregon where our motto is: If you don’t like the weather then drive five miles or wait 5 minutes. So things can definitely change quickly and I’m not going to get my hopes up thr the weather will be that nice until I am standing out there on Saturday.

More practice, more putting and more preparations this week. I can do this! I got this!

Not Broken

Body is beaten
Mind twisting images
Fibro flares
Not the end
The beginning
Not defined
Defining
Not strong
Strengthening
Not sharp
Sharpening
Not honed
Honing
Beaten
Not broken

Social Support

In this day and age, we really are pretty lucky to have the social media that we do. Whether it be WordPress or Facebook, there are a lot of support options for those of us with chronic illnesses. I wanted to profile a few of the Facebook pages that I follow. These pages have helped to strengthen my will to be the best I can be…despite Fibro.

 

So please give these great pages a view. Also, if you have any pages you follow, please feel free to add them in the comments section and I will update my list for all to enjoy.

Facebook Pages:

From The Fog

Fibro Feist

Fibromyalgia This: Diary of A Pain Warrior

Surviving Chronic Pain

Fibro Fighterz

Positivity in Pain

Voices of Fibromyalgia

Fibro For Men

BEHIND FIBROMYALGIA

Closed (Private) Support Groups:

For Fibro Men

United in Understanding: Fibromyalgia, Lupus & RA

My Box

man-peeking-out-of-moving-box

My eyes see
The minds sight
Perspectives
Blurred
Blocked
Darkness
Fog mars
Will empowers
My box a coffin
My vision narrow
No longer
My mind creates
Again
My eyes
See anew
My box
No longer a coffin
Brighter
Comfortable
A nook
Perspectives
Don’t linger
Fight
My box
My home
Safer now
Build your strength
Expand your box