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Friday, July 15, 2011

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?

Saturday, April 9, 2011

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

Monday, February 21, 2011

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

Friday, February 18, 2011

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

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