Rare Disease Day, 2012

Off topic, but only a little

Dear Texas Senators,

I am a very disheartened and disgusted constituent after reading about the budget issue and the fact that Social Security Disability and Veterans benefits may not be paid in August (and who knows when after?).

Being a recipient of SSDI, this issue not only scares me but sends me into a near-blind rage. This government is supposed to be "for the people, by the people, and of the people", yet it seems to be an entity that lives solely on its own and acts for its own purposes. Our United States Government seems to exist just to HURT the people.

Speaking as a private citizen, this is not our debt. Not our deficit. Not our budget. We have our own debts, deficits and budgets to contend with. We were not given the choice to approve the billions (or trillions) of dollars in bail-out money given to multi-million dollar companies. We are not given a choice in deciding that the same multi-billion dollar companies skimp on their taxes. We do not get to weigh in on the decision to give Senators and Congressmen raises. 

No, instead we are threatened to lose our disability pay and our Medicare. Systems we paid into while working and paying our taxes.

Instead of trying to take away the meager disability pay we receive (and can barely live on as it is), why not make those companies pay taxes? Why not make them pay back that bail-out money? Why not force the Senators, Congressmen, and the damn President to take a pay cut or lose a month's pay?

I've already lost my house, my car, and my livelihood to my disability. This is something I cannot change. My Social Security is ALL I have to get by, and I still have to take handouts from friends and family just to be able to afford my medication. I had to go to a charity this month to get my electricity turned back on. If I don't receive my full SSDI check next month, I don't know what is to become of me. I was supposed to finally start receiving my Medicare next month, and now I'm afraid that will be affected as well. Without my check and Medicare, I'll have nothing. No home. No electricity. No medication.

So next month when you cash your substantial paycheck, buy food, pay bills, maybe even go out to eat (something I have not been able to do in years), I want you to think of the millions of American citizens who are going without because Capitol Hill refused to look at other ways to balance YOUR budget, decrease YOUR deficit, or increase YOUR revenue. 

We, as citizens, are not the ones who should be punished or fiscally raped. Please keep that in mind while trying to work through this debacle created by the United States Government.

Sincerely, a once self-proclaimed, card-carrying Republican (nevermore, nevermore) and now leaning towards Libertarian,

Jessica in Texas

Please feel free to copy, edit, and send this same letter to YOUR state senators! I've already sent it to the Texas senators. Haven't the disabled suffered enough?

Discouraged, Disheartened, and Discombobulated

If you read my previous post, you know about the spinal issues I was diagnosed with four years ago (and never told about), and that I was getting a new cervical spine MRI done. I made it through the MRI, and the two days recuperation period after, and was supposed to see my pain management specialist the following Monday to discuss the results. Unfortunately, his office called to reschedule that appointment until April 18th. So I did what anybody in my position (i.e., desperately wanting to know the results) would do: I went to see my primary doctor to have her get me the results.

And the results? Nothing.

The radiologist report states that the curve in my cervical spine is good and states nothing else but a hemangioma at my T3 vertebra. Again, if you read my last post, you'll know that four years ago there was loss of cervical curve, significant diffuse disc bulging, and a hemangioma at my T2 vertebra.

Obviously, there's something wrong with this picture. Literally.

I had taken my medical records with me and showed my primary doctor the radiologist reports from four years ago, showing the issues stated above. While she didn't outwardly agree that the radiologist read the latest MRI incorrectly, she did encourage me to obtain the actual MRI scans from four years ago (which, thankfully, I already have) and take them with me when I see the pain management specialist on April 18th.

I'm so upset! This has turned into quite a Sisyphean effort to find out what is wrong with me, what is wrong with my neck. I can feel that there's something wrong, and I have the headaches, facial pain, and trigeminal neuralgia to prove it!

On top of all that, I have to prove to the insurance company who pays my long-term disability that I am unable to work any job. The first 24 months of LTD was approved because I could no longer perform my last job of Academic Counselor at a university. I've started drafting the letter, trying to explain my limitations, my inability to do almost anything. But without a solid diagnosis of what is really, physically wrong with me, how am I supposed to support my claims?

Xanax powers activate!

Gentle hugs and keep pushing that rock uphill,
Jessi

Why you should obtain copies of your medical records and testing results; or, A Lesson Learned the Hard Way

When I lost my health insurance and could no longer continue seeing my primary doctor of 13 years, I had to start seeking treatment at a Texas Tech and our local county hospital. I requested and obtained copies of my medical records from my former doctor, going back 8 years or so, so that my new doctor would have my medical history and could have them inputted into my electronic records. On Saturday I received my hard copies back in the mail and started reading them.

It was then, and only then, that I learned the truth of what was going on with me.

After my car accident in April 2007, I had various CT and MRI scans of my spine. Though I knew something was wrong with me, particularly in my neck, my orthopedic surgeon and primary doctor assured me that the scans came back showing nothing. It seems they lied.

According to my MRI and CT results, I have the following conditions:

• Spondylosis (arthritis in the spine)
• Loss of cervical lordosis (loss of the forward curvature in the neck)
• Mid-thoracic dextroscoliosis (spine curvature to the right)
• Hemangioma at T2 (a build-up of blood in my T2 vertebrae)
• Significant diffuse disc bulging at C4-C5 and C5-C6 (according to what I've read, diffuse bulging is the worst because the discs bulge in a way that presses and impinges the spinal nerves)
• Spondylolisthesis at L4-L5, which I previously had corrected in 2003 with a double-level spinal fusion (though the scans show that the instrumentation is still in place and does not show signs of movement) 

Imagine my shock in finding out these diagnoses almost 4 years later. Of course, I had to google a lot of it to find what it all really meant. But my doctors should have discussed these results with me! I am at a loss as to why they didn't, even after I tearfully and emphatically claimed there has to be something wrong with my neck because I could feel it!

Could these significant diffuse bulging discs be the cause of all my unrelenting headaches? My Trigeminal Neuralgia? From what I've read about them, they are most definitely the cause of my neck, shoulder, arm, and hand pain. Had I known about them in 2007, when the scans were done, I would have discussed options with my doctors; and I almost certainly would have opted for corrective surgery, even if that meant a cervical spinal fusion. I knew there was something wrong. I just knew it.

Instead I was slapped with a Fibromyalgia diagnosis. I knew even then that there was an underlying cause of my Fibro, and now my intuition and pain have finally been validated. I just wish that I knew then what I know now.

I trusted my doctors emphatically, as I had a very long doctor-patient relationship with each of them. In fact, the orthopedic surgeon was the one who performed my back surgery in 2003. However, now I feel they betrayed me and my trust by keeping these results from me. My mind has been working overtime trying to give them the benefit of the doubt because there was no reason not to tell me. Maybe they didn't read them, and instead just filed them in my medical records. Maybe one doctor thought the other would discuss the results with me. Maybe, maybe, maybe. The fact remains that I had to obtain a copy of my records to find out the truth.

Now I'll take these results, these truths, to my new doctor and pain management specialist to ensure they have read them - that they know them - and start a true path towards recovery. I'll still opt for the cervical spinal fusion if that is an option, as I would even go so far as to cut off my own head to relieve this pain.

This changes everything.

So let my hard-learned lesson be an easy one for you: get copies of all your MRI, CT, x-ray, and blood test results for your own files. Read them. Learn to understand what they mean. And if an issue is not being properly addressed by your doctors, regardless of how long they have been your doctors, get a new doctor.

Gentle hugs,

Jessi

Book review: How to Be Sick

How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard

This is a truly inspiring book. Though I'm not a Buddhist, I found the coping practices discussed to be very helpful. This book was a true eye-opener in that it made me rethink my approach to being chronically ill and my way of thinking in regards to the drastic life changes that were the result of my illnesses.

The practices discussed are in no way easy, but neither is dealing with a chronic illness. But they really made me stop and think about the way I think about my new life dealing with a chronic illness. I would list some of them here, but I urge you to read this book and gain your own insight, without the bias of having read mine, and see how it can help you.

I would highly recommend this book to anybody who is, knows somebody who is, or is a caretaker of someone who is chronically ill.

If you click on the book, the link will take you to Amazon.com where you have the opportunity to "look inside" and read a little bit before you buy it.

If you've read the book, I would love to know what you thought of it!

The author also has a website at howtobesick.com.

You can also read my friend Sarah's review here: Sarah's Life - Living With (And Beyond) Fibro: "How To Be Sick" - Review and Quotes

Gentle hugs and happy reading!
Jessi

National Fibromyalgia Association: Building Your Own Support System

National Fibromyalgia Association: Building Your Own Support System

By: Renee Grindstaff

Reposted from FMOnline

“No one understands what I’m going through.” “I feel so alone.” “I wish I could meet someone who knows what life with FM is really like.” The path of chronic illness can be a lonely one, but you don’t have to be alone. There are many ways for you to involve yourself with other people who are going through the same thing. FM isn't easy to handle on the best of days, but having understanding friends on the journey with you will make your good days better and your bad days a little less bad. When I was first diagnosed with fibromyalgia, I thought I was the only person in the world with a chronic illness. My friends and family couldn’t understand what I was going through, and I felt so alone. The day I made my first friend at an online message board was one of the happiest days of my life. Someone knew what it was like to be me! Over time, I have created my own support system: a network of caring friends who give me the encouragement and support I need to help me get through the flare-ups, medication side effects, and emotional issues of living with chronic pain. My support system has changed my life. Knowing I have friends to turn to who understand really bad days, sleepless nights, and endless doctors’ appointments has made all the difference in how I cope with FM and arthritis. Trying to deal with FM on your own can be extremely isolating. “I felt like I was the only one who was going through this, and no one could understand what I was going through,” says Kellie Fite, who lives with fibromyalgia and chronic fatigue syndrome. Finding sympathy from healthy friends is also often a problem for people with chronic illnesses. Rachelle Skinner, another fibromyalgia patient, says that before she found a support group, “No one would believe that I was that sick." Seeking out others with comparable health problems can keep us from feeling so misunderstood and lonely. Nobody understands the frustration and anger caused by the betrayal of your body better than someone in the same situation. When you have a support system that really relates to your problems, you know who to turn to when you are so exhausted that just getting yourself out of bed feels like too much work. These people understand because they have been there and they will be there again. They are dealing with the physical and emotional hardships of life with chronic pain, just like you. You may even notice physical benefits associated with having friends who understand you. Feeling isolated and alone can increase stress and tighten up muscles, causing additional pain and anxiety. Once you’ve found a group of people to connect with, you may find your body relaxing as the tension of loneliness eases away. “Just knowing someone else out there feels like I do is such a help,” says fibromyalgia patient Marie Ritzel. A support group is a fantastic resource for FM patients. It connects you with others who are being treated for FM, and provides a place to exchange information on various medications and their side effects, alternative treatment methods, and natural supplements. The suggestions offered in a support group environment are methods that have been tried in the crucible of daily pain. A support group also makes the search for a new doctor or physical therapist much easier, because you have an easy source for recommendations. Support group participants may also exchange coping strategies for dealing with the emotional side effects of having a chronic illness. “We talk about what works and what doesn’t,” Ritzel says about the fibromyalgia support group she leads in Tillamook, Oregon. “We can ask questions and we can cry together…it is a safe place to cry about the pain.” Local support groups may also feature speakers addressing various topics of interest: physical therapists discussing exercise programs, physicians talking about improving doctor-patient communication, or nutritionists sharing information about healthier diets. There are numerous psychological and spiritual benefits to being part of a support group. “When I have a particularly hard day, I can write these people and they are there for me,” says Fite, a member of an online support group for women with fibromyalgia. “They are like family.” Rachelle Skinner, another support group member, notices a special bond that forms between people who live with chronic pain. “When you join a support group, you can meet people just like you and make lifelong friendships.” Ready to start building your own support system? A good place to begin is by finding out what kinds of support groups are available in your area. The National Fibromyalgia Association has a list of support groups on its website. You may want to contact the local Arthritis Foundation chapter, your doctor’s office, physical therapy center, or hospital. Check in the newspaper, ask around, or do an internet search. There are support groups for specific illnesses, and also those that welcome people with any sort of chronic pain. Explore all of the different environments available to you and see what fits best with your life and needs. Not into the support group environment? There are still plenty of ways to get involved with other people. Exercise classes are a great way to take care of your body and make some new friends. Most YMCAs offer classes geared toward people with health problems. Or try volunteering for an organization that raises public awareness on chronic illnesses. If you’re already spending hours in the waiting room of your doctor’s office before an appointment, why not try starting a conversation with another patient? You may have more in common than you realize. And since most people love to talk at length about their symptoms and treatments, you’ve already got an easy conversation starter. Are you living in a rural area, house-bound, or just don’t have the time and energy to spend on the social scene? You don’t have to go any farther than your computer for support. There are hundreds of online communities for FM patients—small groups and large ones, with members spanning the globe or located in the same area. Most online message boards are very easy to use, and usually provide a help section for those who are just getting started. When joining an online community, be prepared to make the first move. Post a message or send an email introducing yourself. Ask questions. Respond to other people’s messages. Make friends by being one. Online communities connect people in various parts of the world, so if you are looking for a face-to-face support system, you may want to start elsewhere. However, one of the benefits of online support is that it is always there. You can access it anywhere and anytime. When you’re having a bad day, you can let your online friends know and they may respond to your message right away, sending words of encouragement or tips on how to make yourself more comfortable. You may have to try several different things before finding a place that feels right to you. I started out posting messages at some larger forums for people with various types of illnesses. I made a number of friends through an electronic pen-pal service, and am now a member of a smaller online support group. The women in my support group are closer to me than many of my local friends. Even though we are miles apart, the empathy, understanding, and experiences we share bind us together in a unique and deeply meaningful way. Does the idea of building your own support system seem overwhelming or make you uncomfortable? Listen to the voices of those who have already traveled that road. “Don’t wait one more minute to join a group,” urges Skinner. “Since joining a support group I have found the love and support I need to get through the day.” “Take the time to do this. At first it can be awkward, but over time when you help others and they help you, you start bonding and feeling close to them,” says Fite. “It gets to a point where you feel like they are your complete support system.” The most important advice I can offer to you in building your own support system is this: reach out. It may not be easy to create a support system for yourself, but it will definitely be worth it. Take the time. Make the effort. Get to know some new people. Try different things until you find a place where you fit in. Once you’ve built your own support system, you’ll never look back.

More than just a headache

I've had migraines for about 24 years. I've had tension headaches. I've had "spinal" headaches from getting injections directly into my spine. I've had headaches caused by the whiplash, which was caused by the car accident.

But I've never had headaches like the ones I've been suffering from lately.

About a month ago, I started having pain on the right side of my face. It started out along the upper jaw, then wound its way down through my mandibular joint and across my lower jaw. It took over my ear and I could feel it like an ice pick deep inside my ear canal. The pain, which I can only describe as the most excruciating pain I've felt thus far, traveled up the side of my face, through my temple, and into my skull.

This all happened really fast and has been ongoing, never ceasing, for a whole month. Sometimes the pain isn't as intense and horrendous; and other times, like last Thursday, I end up with my head in my hands screaming about how it's killing me. Literally killing me. I thought the aneurysm was going to pop and that was going to be the end of me. I was just screaming, waiting, and praying for the end to come quickly.

Now, I don't know if I really have an aneurysm. The idea of one has always scared me. I don't know if it's a brain tumor. I don't know if there is any cause at all to the horrifying pain I've been experiencing. I've had a CT scan, but my doctor is currently "out" so I've requested a copy of the results so I can find out without having to wait for her.

Right now, it is just being referred to as Trigeminal Neuralgia. Trigeminal Neuralgia is pain in the Trigeminal nerve, which comes down from your skull, through your temple, and branches off into three areas of the face: the eye, the upper jaw, and the lower jaw. I have done some research (as I normally do) and found a picture of the face and where the Trigeminal nerve is located. It didn't surprise me that the nerve is located in the exact areas in which I am having pain. In fact, it seems that my entire right-side Trigiminal nerve is affected.

The Trigeminal nerve is represented as yellow in this picture.

I read somewhere (and I promise to post a link as soon as I find where I bookmarked it) that, while TN is rare, it is not so uncommon in people who suffer from Fibromyalgia. That's way too many algias, if you ask me. The Facial Pain Association states, "Trigeminal neuralgia (TN) is not fatal, but it is universally considered to be the most painful affliction known to medical practice.  By many, it's called the "suicide disease."

Having experienced this pain for the past month, I believe that statement wholeheartedly.

If you start experiencing this facial and head pain, please see your doctor immediately. While it is thought to be caused by an expanding blood vessel pressing against the nerve, the true cause remains unknown. It is best to have a CT scan or MRI to rule out aneurysms or tumors or something else entirely. There is a lot of information on the Internet regarding Trigeminal Neuralgia and myofacial pain. Read up, print out, and take that information to your doctor.

I will keep you all informed on my results and how this all plays out.

Gentle hugs,
Jessica

Empowering people with disabilities: Knowledge

Department of Labor's Office of Disability Employment Policy's 

Job Accommodation Network (JAN)

Accommodation and Compliance Series: Employees with Fibromyalgia

Accommodation and Compliance Series: Employees with CFS

JAN’s Accommodation and Compliance Series is designed to help employers determine effective accommodations and comply with Title I of the Americans with Disabilities Act (ADA). Each publication in the series addresses a specific medical condition and provides information about the condition, ADA information, accommodation ideas, and resources for additional information.

Is a FMS/CFS a disability under the ADA?

The ADA does not contain a list of medical conditions that constitute disabilities. Instead, the ADA has a general definition of disability that each person must meet (EEOC, 1992). Therefore, some people with FMS will have a disability under the ADA and some will not. 

A person has a disability if he/she has a physical or mental impairment that substantially limits one or more major life activities, a record of such an impairment, or is regarded as having such an impairment (EEOC, 1992). For more information about how to determine whether a person has a disability under the ADA, visit http://askjan.org/corner/vol02iss04.htm.

Fibromyalgia and accommodations under the Americans with Disabilities Act

This a quick overview of some of the job accommodations that might be useful for people with Fibromyalgia and CFS. For a more in depth discussion, access JAN's publications at http://askjan.org/media/atoz.htm. To discuss an accommodation situation with a consultant, contact JAN directly.

JAN's Searchable Online Accommodation Resource for Fibromyalgia

JAN's Searchable Online Accommodation Resource for CFS

A comprehensive list of all JAN publications.

Remeber: Knowledge is power.

Gentle hugs and always be learning,

Jessica

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

From FMS Self-Help Course: Managing Emotions

Feelings such as worry, frustration, sadness and loss are common and understandable responses to long-term illnesses such as Fibromyalgia and CFS. They are a result of the changes, limitations and uncertainty brought by illness. Managing feelings deserves a place in your self-management plan, just because they are so common.

There are two additional reasons as well. First, CFS and Fibromyalgia often make emotional reactions stronger than they were before and harder to control. People often say they cry more frequently, get upset more easily or have more angry outbursts than before they were ill. The intensification of feelings applies to positive emotions as well as negative, experiences like seeing a sunset or enjoying a family gathering. Any experience that triggers the production of adrenaline intensifies emotions and, often, makes symptoms worse as well.

Second, emotions can interact with symptoms in a vicious cycle. For example, being in constant pain can trigger worries about the future. Worry leads to muscle tension, which, in turn, increases pain. You can interrupt this cycle in several ways, for example by learning relaxation to reduce muscle tension or by changing your “self-talk” to reduce worry.

Depression

Depression is common in people with CFS and fibromyalgia. Some of the depression is situational, a reaction to the limits, disruption, losses and uncertainty brought by long-term illness. This type of depression is captured in the remark, “Who could have these conditions and not be depressed?” Self-management strategies are often helpful in response to this type of depression.

Depression may be biochemical, as well, created by changes in the chemistry of the brain. Self-management strategies may also be useful for this type of depression, but treatment normally includes medication, too.

Depression may be triggered by a sense of helplessness, by fear, frustration and anxiety, by loss, or by uncertainty about the future. Signs of depression include feelings of unhappiness or sadness, lack of interest in friends or activities, isolation, suicidal thoughts, and loss of self-esteem. Serious or long-term depression or thoughts of suicide call for immediate help from a doctor, therapist or suicide-prevention service.

Loss

CFS and fibromyalgia usually bring many serious losses. We often experience loss of control over our bodies, loss of friends and loss of valued activities. We may be forced to give up our job and thereby lose income, companionship and challenge. And often we have to abandon dreams, thus losing the future we had envisioned for ourselves. In sum, we experience the loss of the person we used to be and the person we hoped to become.

Loss can trigger a variety of reactions, including denial, worry, anger, guilt, and sadness. An individual may experience some, but not necessarily all, of these reactions, may experience some more than once or may feel more than one at the same time. Working through loss is often a several year process, normally ending in acceptance. Acceptance combines recognition that life has changed with a realization of the need to lead a different kind of life than before.

The assignment for this week is to answer and discuss the following questions:

• What do you do to help yourself feel better when you’re feeling blue?
  
  
• What strategies help you work through the losses brought by your illness?

I will be posting my answers soon. How would you answer these questions?

Love and hugs,

Jessica

Self-Help: Managing Stress

I have never been one to manage stress effectively. If anything, I would try to compartmentalize everything so I wouldn't have to deal with anything as it happens. It seemed so much easier at the time.

Week 4 of the online Fibromyalgia Self-Help course focuses on managing stress. "Stress is a double challenge to people with Chronic Fatigue Syndrome and Fibromyalgia. First, illness adds new sources of stress to those common in everyday life. Second, CFS and FM are very stress-sensitive illnesses. A given level of stress takes a greater toll than on healthy people. Thus, the double challenge: your stresses are multiplied at a time when you are more vulnerable to the effects of stress."

Stress can come from many different sources, including:

• Symptoms: Ongoing discomfort is tiring and worrisome
  
  
• Limits: Frustration from living within strict limits
  
  
• Loss: Loss of control, of income, of friends and of dreams for future
  
  
• Isolation: Stress from spending time alone or feeling different or alienated
  
  
• Money: Financial pressure
  
  
• Relationships: Often strained; may lose some relationships
  
  
• Thoughts: Unrealistic expectations or overly-pessimistic thoughts
  
  
• Uncertainty: Worry about the future
  
  
• Sound/Light: Sensitivity to sensory overload
  
  
• Allergies: Sensitivities to foods and other substances
  
  
• Fatigue: Sleep deprivation
  
  

My post for week 4 follows:

Overwhelming stress is one of the main reasons I had to leave my job and drop out of graduate school. The stress got so bad there wasn't a day that I didn't break down into an uncontrollable and hysterical fit of crying. I don't even have to explain how that affected my pain level.

Things I currently do to relieve stress:

1. Audiobooks. I download audiobooks onto my iPod, lay down with an eye mask to block the light, and be read to. Sometimes I'll do this for an hour or so, but on particularly bad days I've been known to do this the entire day. It keeps my mind focused on the story being told and off of other things.

2. Laughing. Whether it's something something funny I find on the Internet or having a funny conversation with a friend or family. Laughing always eases the stress.

3. Acceptance. This is the hardest part and something I am still working on. Accepting that this is my life right now and I have to learn to understand and cope with this new me. I grieve for my former life and cycle through the stages of grief. When I reach acceptance, I feel at peace. Of course, I still cycle through the other stages at times - just waiting to get back to acceptance.

Target:

1. Rest for at least an hour a day, 7 days a week. Confidence: 10

2. Return to pool exercises, at least 3 times a week. Confidence: 8

3. Hire somebody to do housework. Confidence: 8

Note: As I said before, I always had a hard time managing stress and there are too many times that I don't know what to do. What do YOU do?

Gentle hugs and wishes for a stress-free day,

Jessica

Self-Help: Pacing

Week 3 of the online Fibromyalgia self-help course was all about PACING. Again, the course is based on Dr. Bruce Campbell's book, "The Patient's Guide to Chronic Fatigue Syndrome and Fibromyalgia." The premise of the book and course is to develop personal strategies for managing fatigue and pain, pacing ourselves, managing stress, etc. Each week we are given an assignment and have to post our management techniques to the group. . This is my post on Pacing for week 3:

I've been going through a really tough time lately, which I'm sure all of you understand. I seem to be in a flare that is going into its 7th month and am struggling to find some relief. Despite the fact that I have suffered from chronic pain for 16 years, up until two years ago I was able to finish my Bachelor's degree, start my Master's degree, work full time, and have an active social life. Now I have trouble just getting up and walking to the kitchen. I had to drop out of school, three courses away from a Master of Arts in Education. I had to give up my job. And I've lost my social life, as well.

Pacing has always been an issue for me. I hate when things are undone or not completed, so I tend to get started on something and not stop until it's done - despite the pain it causes. My son constantly reminds me to pace myself, rest more, or simply let him do it. It's hard to give up that control. In my former life, I always had to be in control.

What makes symptoms worse?

• Lack of sleep
  
  
• Emotions
  
  
• Physical exertion
  
  
• Not enough movement/too much movement (trying to find that fine line, the happy medium)
  
  
• Stress

What gives me a sense of control?

• Being able to complete something I started
  
  
• Getting things done
  
  
• Being able to successfully reclaim some area of my former life

Target:
Last week my target was to clean my room, bathroom, and put away laundry. I was only able to put away the laundry. I learned that I should set small, attainable goals and targets each day. Some days my target may be to just wash my hair, others to just rest, and some days I may be able to clean half my room. Small and attainable goals are the key to pacing.

Note: This was a huge breakthrough for me, though it seems so simple. I used to be the person always doing something, despite my pain (up until 2-1/2 years ago). I worked all the time, went to school full time, kept my house clean, raised my son alone. It was exhausting, but I managed. Now I can no longer manage and that was the hardest part. I would try to do the things I used to be able to do and the result was being confined to bed, writhing in pain for days, sometimes weeks. I'm learning to accept my limitations and pace myself.

As I share my postings for this self-help group, I would love to read your responses to the questions I have had to answer in my assignments. What makes your symptoms worse? What are you doing to manage fatigue and pain? Etc, etc. I believe we can learn from each other's responses.

Gentle hugs and pace yourself,

Jessica

Managing Fatigue and Pain

If you've read my recent posts, you know that I'm enrolled in an online Fibromyalgia self-help course. The course is based on Dr. Bruce Campbell's book, "The Patient's Guide to Chronic Fatigue Syndrome and Fibromyalgia." The premise of the book and course is to develop personal strategies for managing fatigue and pain, pacing ourselves, managing stress, etc. Each week we are given an assignment and have to post our management techniques to the group. Week 2 was Managing Fatigue and Pain. This is my post for that week:

I’m still developing strategies to better my sleep and fight fatigue, despite the fact that I’ve suffered from insomnia and fatigue since I was 16. It seems that something will work one week and not work the next. But this is what I’m working on now:

• Putting myself on a sleep schedule. I try to go sleep at the same time each night and let my body decide when it’s time to get up. It’s when that schedule is interrupted that I feel the most fatigued.
  
  
• B-complex sublingual liquid, B12 methylcobalomin sublingual tablets, and D-Ribose for energy.
  
  
• Keeping my mind active, even if I can’t keep my body active. I blog and I play sodoku, Scrabble, and mahjongg on a hand-held game system. I also read a lot of books! Anything to keep my mind going.
  
  
• Laughing. I have animated discussion with my online support group, my son, my mom, my best friend. Laughing can release endorphins that relieve pain (so I won’t add it to the next section), and leaves you feeling good, strong, and awake!
  
  
• Limit any shopping to quick trips. I let my son do the major grocery shopping. When I have to do the shopping, I suffer the consequences in terms of pain and fatigue for days.

I am also still developing strategies to manage the pain of Fibromyalgia and my spinal conditions. My current pain management strategies are:

• Using a TENS unit for back, hip, and leg pain.
  
  
• Water aerobics at the YMCA at least 3 times a week, as well as sitting in their hot tub before and after exercises, to keep my muscles moving.
  
  
• Weekly massage therapy with a licensed Physical/Massage Therapist.
  
  
• Taking medication on a regular schedule and not waiting until I hurt to do so.
  
  
• Pacing myself and being mindful of my limits when it comes to doing any manual tasks.

Target:

I have a ton of things around the house that need to get done. I am trying not to focus too much on the little things, though. :)

What: Clean bedroom, bathroom, and do laundry

How much: at least 20-30 minutes a day with resting periods

When: Evenings

How often: 3 days a week

Confidence: 6

Note: That week I did not meet my target because even that was too much. Thus, the low confidence level. The key is pacing and not overdoing it. I'll go into pacing more in my next blog post.

Love and hugs,

Jessica

Fibromyalgia Wellness Project

The Fibromyalgia Wellness Project, a research study sponsored by the National Institute of Arthritis, Musculoskeletal and Skin Diseases (NIAMS), National Institutes of Health. This project is  conducted by Collinge and Associates, an independent research organization directed by William Collinge, PhD. The project is now inviting participation by people living with fibromyalgia.

What are the benefits?

• You may discover new ways to reduce your symptoms and improve the quality of your life.

• You will be contributing to knowledge that may help others living with fibromyalgia.

Who is eligible?

• Adults (over 18) with fibromyalgia.

• You must be able to read English and complete the assessment forms on this website.

• You must have daily access to the internet at home to use SMARTLog.

What is involved?

• Read the Consent Form and attest to your understanding and agreement.

• Complete the Application Form on this site.

• Fill out monthly surveys (10-20 minutes) on your well-being and quality of life, at the beginning of each month of use of the website, and at the end of the study period.

• Complete the SMARTLog several times each week (about 5-10 minutes each time). You can do this in the evening before bed, or in several visits through the day.

• Ask for and receive SMART Profiles telling you what inputs lead to reduced symptoms for you.

• Try out new strategies on your own or treatments to see if they help you to reduce your  symptoms.

How long is the study?

This study is being conducted in two stages:

-- The first stage (“Alpha”) is three months.

-- The second stage (“Beta”) will be nine months.

-- You can participate in either or both stages.

The longer you participate, the more likely you are to learn strategies that reduce your symptoms. We recommend at least three months.

Sign up here: http://www.fmwellness.org