So I'm trying to win a Nook...

If you don't know what a Nook is, it's an electronic book reader much like Amazon's Kindle. It is much more versatile, however. And, the thing is, I've wanted one for quite a while.

My Fibromyalgia has advanced (or deteriorated) to the point that I'm unable to hold even a paperback. As I've been an avid reader since the 2nd grade, having my ability to read books taken away from me is more than I can bear. All I can do these days is read and peruse the Internet. Even typing a simple, short message such as this one takes a lot out of me. But reading has always been my first love and I don't want it taken away only because I can't hold a book long enough to read a single page.

The Nook is lightweight and weighs less than a paperback book, so I'm thinking it is exactly what I need. I was supposed to get one for Mother's Day, but with the looming foreclosure, rising medical costs and general cost of living, it was just not meant to be. So the only way I'm going to get one is if it's giving to me. And since they are giving this one away, I would like the chance to win it.

So I'm asking - nay, begging - for your help to win a Nook from a contest hosted by a website called backmybook.com. All you have to do is click on the link. There is no registration or purchase necessary. Just a simple click will gain me points to winning the competition.

fmslife recommends Ancestor on http://backmybook.com

Gentle hugs, gentle reader,

Jessica

A Better Way to Rate Your Pain!

From Hyperbole and a Half:

Print this out and take it to your next doctor's appointment. When asked to rate your pain on a scale of one to ten, use this visual representation and the accompanying descriptions. This "10-scale" is so much easier to explain.

1:  I am completely unsure whether I am experiencing pain or itching or maybe I just have a bad taste in my mouth.

2:  I probably just need a Band Aid.

3:  This is distressing.  I don’t want this to be happening to me at all.

4:  My pain is not fucking around.

5:  Why is this happening to me??

6:  Ow.  Okay, my pain is super legit now.

7:  I see Jesus coming for me and I’m scared.

8:  I am experiencing a disturbing amount of pain.  I might actually be dying. Please help.

9:  I am almost definitely dying.

10:  I am actively being mauled by a bear.

11: Blood is going to explode out of my face at any moment.

Too Serious For Numbers:  You probably have Fibromyalgia.  It appears that you may also be suffering from Stigmata and/or pinkeye.

Gentle hugs and wishes it was just itches,

Jessi

Not ready for the straight jacket yet, Doc.

I saw a new doctor yesterday. I'd been putting it off for so long and I don't know why. My primary care doctor of 12 years has been pushing me to go to Texas Tech because they have a new pain management facility in our area. He gave me the referral in August and I only just called on Tuesday.

I guess I'd just given up that anything could be done to help me. But, of late, the pain has been so unbearable that I could not put if off any longer. There was also the nervous breakdown I feel is imminent and my mother's gentle pushing (love you, Momma!) that made me realize something needed to get done -fast .

So, I went. Honestly, I don't even know if the doctor I saw today was a pain management specialist or a general practitioner. First I spoke with a 4th year medical student (totally cute! And me looking so frumpy! Shit!). He took my medical history and talked about my symptoms and that took about 45 minutes. I made sure to tell him every detail of my pain, what triggers it, how most times nothing triggers it, how it feels like my bones are being crushed, and I can't turn my head to the right without considerable pain, etc. Every sorry detail.

When my new doctor came in, he had already been filled in on everything by cute Dr. 4th Year. We talked about medication I've taken (I took in my empty Rx bottles to show what I've taken, the dosage, etc - I didn't want there to be any question); we talked about what worked and what didn't, how long some meds worked and the bad reactions I've had to others. Then he put his hand on my shoulder and said, "I'm going to help you."

"I'm going to help you."

I have never had a doctor tell me that. Usually it's me asking, "Will you help me?" or something to that effect. But he was sincere and seemed confident that he was, indeed, going to help me.

Then he started talking to me about my depression. I explained I've been depressed pretty much my entire life. He asked if it was worse now and I agreed it was, stating, "When you're in pain 24/7, it gets rather depressing." Hand on shoulder again, he says very softly, "I know."

Of course, this is when I start crying.

At that point he asked me if I was suicidal. I didn't say anything at first, as he was giving me a look that said, "You can trust me." I told him I frequently thought of death and dying (frequently being pretty much all day, every day), but I wasn't going to kill myself. Then I added, "I just wish a meteorite would come down and kill me instantly. I won't take my own life. I just wish something beyond my control would."

Dr: It's hard to live with the pain, but you won't kill yourself because you have people who love you.

Me: Exactly.

I guess he trusted me, because I'm not under 72-hour observation at our local state psychiatric hospital (where my uncle works, incidentally - I could have been hanging out with him for the next three days).

He tells me again that he's going to help me. He's going to request my records from my 12-year primary care doctor (I wonder if this means we've broken up), then I am going to return to see him in three weeks. But for now, take this extra-strength Vicodin for the pain, along with the usual Rx regiment, and relax. Relax because he is going to help me. We'll run tests and panels and take MRI's and CAT scans and everything will be ok. He just wants to see my records first.

Dare I hope that this doctor knows his shit? Dare I hope at all? How many times have I been let down by doctors in these years of constant pain? Only to find one about 5 miles away from my home who understands, cares, and promises to help? What are the odds?

Gentle hugs and shine on you crazy diamond,
Jessi

P.S. Totally unrelated: I spend a lot of time playing on Tumblr, which is kind of blog site in a totally different way. If you have a Tumblr account, I'm HERE. Feel free to follow! Send me a message and I'll follow you, too. I also spend a lot of time on Goodreads and you can see my profile HERE. If you're a member or reader who would like to join, please feel free to send me a friend request. Next month's group read will be The Plague by Albert Camus. Would you like to join me?

Small Successes and Epic Failures

It's been a while since I have written, but it's been a while since I have done anything. So it all evens out.

My pain levels have been an absolute rollercoaster. One minute I'm ok, the next I'm squirming and moaning in pain. It should be noted that I have stopped taking narcotic pain killers. I'll have a low-dose Vicodin when the pain gets to be too much, but that seems to only be happening once every two or three days and it's very rare that I would have to take more than one in a day.

I guess it's a good thing to reduce the narcotic intake from 4 times a day to a minute dose every two or three days. At least now I know which pain was actually opioid-induced hyperalgesia.

Another change in my medication in an increase in Zanaflex and Neurontin. I now take Zanaflex 4x a day like clockwork and my doctor has increased my Neurontin to 800mg 4x a day, for a total of 3200 mg a day, again, like clockwork. I still have to have alarms set on my phone to remind me when to take a dose.

This medication seems to be working well, as my good moments are getting longer. But, then, I try to do something stupid like the dishes or the laundry (or both) and I end up in bed squirming and moaning again - and not in a good way. I seem to have perfected the push-crash cycle. I push-push-push-push, then crash hard. Pacing is always something I have needed to work on.

Another update in my life is that I'm considering going back to school. I don't know that I'll be doing the online modality again, as I just don't have the discipline to keep up with the coursework when left to my own devices. But, will I have the discipline and the spoons to physically attend class a couple days out of the week? I'd like to try, honestly. Because no matter what else I have accomplished, no matter what else I went through in life and survived, not finishing my Master's degree makes me feel like a complete failure. And failure has always been my greatest fear.

Which brings me to another failure - everything else. It looks like I may lose my house that I've lived in for 9 years, and there is a good possibility that I may lose my car. I'm struggling to keep the utilities on and paying for my medication out of pocket because I don't have health insurance. I'm not sure what to do at this point except ask my BFF if she would consider rooming with me (and son, until he leaves for college). She wanted to start looking for a new place for herself to live this month. If we pool our resources, maybe we can get a moderately nice house together. Otherwise, I'm going to be forced to move in with my step-mother. After all, I own 1/6 of the house she's living in (and I'm sure my brothers won't mind me taking up their portions). But I really don't like my step-mother, so that's the last resort. I wonder if I can sell the house before it forecloses? That would be bonus. Anybody who knows anything about any of this kind of stuff, please give me some pointers.

So those are my small successes and epic failures that I've been dealing with since my last post. Maybe now that I've gotten it all off my chest, I can finally sleep again.

Gentle hugs and keep on rolling,

Jessica

H1N1 Prevention Suggestions

I received this from a friend. With our compromised immune systems it never hurts to try these simple things.

Jessica

H1N1:

The only portals of entry are the nostrils and mouth/throat. In a global epidemic of this nature, it’s almost impossible not coming into contact with H1N1 in spite of all precautions. Contact with H1N1 is not so much of a problem as proliferation is.

While you are still healthy and not showing any symptoms of H1N1 infection, in order to prevent proliferation, aggravation of symptoms and development of secondary infections, some very simple steps, not fully highlighted in most official communications, can be practiced (instead of focusing on how to stock N95 or Tamiflu):

1. *Frequent hand-washing (well highlighted in all official communications).

2. “Hands-off-the-face” approach. *Resist all temptations to touch any part of face (unless you want to eat, bathe.)

3. *Gargle twice a day with warm salt water (use Listerine if you don’t trust salt). *H1N1 takes 2-3 days after initial infection in the throat/nasal cavity to proliferate and show characteristic symptoms. Simple gargling prevents proliferation. In a way, gargling with salt water has the same effect on a healthy individual that Tamiflu has on an infected one. Don’t under estimate this simple, inexpensive and powerful preventative method.

Similar to 3 above, *clean your nostrils at least once every day with warm salt water. *Not everybody may be good at using a Neti pot, but *blowing the nose hard once a day and swabbing both nostrils with cotton swabs dipped in warm salt water is very effective in bringing down viral population.*

5. *Boost your natural immunity with foods that are rich in Vitamin C. *If you have to supplement with Vitamin C tablets, make sure that it also has Zinc to boost absorption. *Vitamin A and D3 can also help prevent flu due to their anti-viral properties. (email me back if you want me to give you the Vitamin A and D3 protocol)

6. *Drink as much of warm liquids (tea, coffee, etc) as you can. *Drinking warm liquids has the same effect as gargling, but in the reverse direction. They wash off proliferating viruses from the throat into the stomach where they cannot survive, proliferate or do any harm.

I suggest you pass this on to all your friends and family; you never know who might pay attention to it - and STAY ALIVE because of it.

Managing Emotions

When I was working, managing emotions was close to impossible. I spent almost every day at my desk, in a cubicle no less, crying from pain, from depression, from anxiety, and, sometimes, crying just for the sake of crying. I cried all the way to work, then I cried all the way home. I cried myself to sleep. I did not know HOW to manage all of the emotions that would hit me all at once. I would have anxiety attacks at work that were not only scary, but horribly painful. While once I thrived through a very stressful life, I could no longer handle the slightest provocation.

When I stopped working and spent more time at home resting, I still had a hard time managing my emotions. I would blow up at people in public if they did the slightest thing wrong to cause me discomfort, I blew up at my son without a good reason for such an outburst; I was, literally, a ticking time bomb just waiting to go off.

It goes without saying that my emotions affected my mental well-being, and over time I realized how my emotions were affecting my physical well-being. I have taught myself to calm down drastically through meditation, inner reflection, and spending time alone.

However, there was a very recent emotional outburst. I was in Wal-Mart with my son to get a few things. We learned they didn't have any electric carts available and I was in way too much pain to walk through the store, so I decided to wait in the car. We hadn't brought in my walker, to I used an empty cart for stability to get to my car. Somebody behind me started yelling, "Move it! Come on!" I turned and said, "Excuse me? I'm disabled." And he CONTINUED to yell at me for holding him up! Needless to say, I lost it. I started screaming obscenities at him, and followed him out the door, continuing to yell at him. He slunk down and started walking faster. I held my head up high until I got into my car, then I broke down into the ugly-faced, hyperventilating cry. I was angry and hurt by his insensitivity and ignorance. But I only allowed myself to cry for 10 minutes. Then I compartmentalized just like I do with everything else.

1. What do you do to help yourself feel better when you’re feeling blue?
   
   When I am depressed, I call my mom. Without fail. She always has a way of putting things into perspective for me, then we end up talking about other things that make me joke and laugh. It's almost impossible for me to be depressed around my mom!
   
   Another thing I do is turn to my Twitter support group. I have never found a group of women more supportive than theses ladies! Whenever anybody is having a bad day due to pain, depression, anxiety, whatever, these women "flock" around them like mother hens. Even though I only know these ladies from online, I consider them my dearest friends because they have helped me so much. The best part is that we all understand what each other is going through.
   
   
2. What strategies help you work through the losses brought by your illness?
   
   Loss is still something I try to cope with on a daily basis. I lost my job, lost my Master's degree, lost my social life, and my quality of life is questionable. Every day I run through things that, maybe, I would be able to do despite these afflictions. But I have yet to come up with anything. Lately I have rediscovered my creative side when I started playing with a scrapbooking program on my computer. I've started playing with graphics and making things for my blog and online support group. But it's helped me to know that I haven't lost every part of myself through illness. I am still loved, I can still love, I can still think (sometimes) and read and write, I can still be creative, I am still needed, and I can still help people. I'm still me, but in a different light and on a different path.

Love and hugs,

Jessica

P.S. The support group can be found at http://groups.google.com/group/FibroVoices

The Dave Ryans of Wal-Mart

I went to WalMart with my son today to pick up a couple of things and to get my hair cut. After getting my hair cut, I wanted to join my son in grocery shopping, but they didn't have any electric carts available, and I was in a LOT of pain, so I decided to go back to the car and just wait for my son to finish shopping.

I grabbed an empty cart to use for stability because I didn't have my walker with me, and started walking slowly through the store and out the door to get to my car. I tried to give people room to pass me because I had to walk really slow due to the back and leg pain.

When going out the first of the automatic doors, I heard someone behind me start yelling, "Move it! Come on!" Once through the first set of doors, I inched over to the side to let people pass and the guy who yelled started bitching at me again. I calmly said, "Excuse me? I'm disabled." Again, he was bitching at me and telling me I was holding up the line out of the store.

I lost it! I started screaming at him and continued to scream at him all the way out into the parking lot. I would tell you what I told him, but it's not the things to be said in polite company. I finally made it to my car, unlocked the doors, sat down, and started crying. One of those ugly-faced, hyperventalating cries, too.

It's very hurtful when people don't understand or even CARE to understand how hard it is for us. The entire incident reminded me of Dave Ryan and the statement he made about how he thinks people who claim to have Fibromyalgia should be shot (he apparently does not believe it is a true disease). There are TOO MANY people out there who would rather us be shot than to wait a few seconds for us to get out of their way.

For those who do not know, I have created a Facebook cause entitled, "Fibromyalgia Sufferers Against Dave Ryan." If you are on Facebook and have not already done so, please join our Cause. We have chosen the National Fibromyalgia Association as our beneficiary, so all donations will go directly to them.

Was my incident at Wal-Mart a mere coincidence in light of the incident with Dave Ryan? Maybe. However, it made me even more determined that Mr. Ryan be held accountable for his statement. It made me more determined to do whatever I had to do to make his statement known to the media. It made me more determined to ensure that every disabled person has a voice and that voice is HEARD! There is strength in numbers! And as we come together in unity with a single purpose, WE SHALL PREVAIL!

And all you normal, healthy people are just going to have to wait, regardless of how slow we are!

Fibromyalgia may be invisible, but we are not!

Love and hugs,

Jessica