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