Spine in my Esophagus

I thought I'd heard it all. I didn't think there was anything left a doctor could tell me that could surprise me any more. Wrong. I have been seeing a spine surgeon because of my hands having difficulty gripping and picking up things again, especially the left one. My c-spine hasn't been checked in a little while so it was time for a look anyway as that's the area that controls the hands, though there was the possibility of it being scar tissue growth blocking up the arteries and nerves again for the Thoracic Outlet, so one step at a time to rule things out.

This group of doctors has their own MRI so I was able to get in pretty quickly, and get back in for results a few days after that, which puts us at last week. Let me explain just a little of what you are seeing: you will notice that the spine consists of vertebrae that basically look like little square boxes. Sure, the lines are a wee bit sloppy, but squares all the same. You with me? Now look underneath the hardware. There are two squares there that are WAY out of whack. Both of those squares have one side that is nothing like a straight line. Instead, there's a huge pointy object sticking out of each vertebra. That's not normal, nor is it good. Those points are shoving straight into my esophagus. Directly on the other side of the vertebrae, my spinal cord is being shoved into. That isn't news, but it has definitely gotten worse.

I now have an explanation why my hands have progressed. I hate it but having Ehlers-Danlos and so many surgeries means when part of me isn't working so well, whether due to EDS or because it's been worked on, I've learned to use others to get by. There is no use wasting time whining about it.

The progression in the spine doesn't surprise me. That my esophagus has pointy pieces of bone pushing it in, yeah that came out of nowhere. The surgeon and the PA explained this is why my voice cracks so much, why it's scratchy and has to be cleared a lot, etc. It makes sense, given I have a spine in my esophagus.

The spine surgeon is calling one of my other doctors to set up a spinal cord procedure. We'll see. I don't know what to think. It's really a temporary band-aid but I have to try because I can't keep like this. I don't know how long my esophagus can stay like this though and that's another big concern.

Tips for Married Couples Dealing w/Pain, hearing update

If you are in a long-term relationship and one of you is a chronic pain patient, this article might be of interest.

Thank you for those who have sent notes to see how the 2nd hearing went on Monday. I apologize for taking a couple days off. I have not only needed this time to deal with what happened, but all four of us are sick right now. Nothing major, but we all have head and upper chest congestion and a tremendous amount of body aches. Basically we're coughing hacking stooped over when we move and moaning while we do so, LOL. We can barely move. I'd love some good-ol' OJ right now for all of us but I don't think any of us are getting to a store any time soon.

So, the hearing. I don't even know where to start. In a nutshell, the person responsible for this mess was called to the stand and was caught in a multitude of very serious lies, which directly resulted in the job termination, and he admitted what he did.

CD's idiotic psych report was put to shame, her own issues discovered and the report basically tossed out.

Three and a half hours later, three committee of three voted to uphold the decision the person above made, yeah, the decision made by the guy who just was busted for a ton of lies, which were used to fire someone, take away his entire career, destroy our lives the last 22 months in ways described elsewhere at this blog.

No reason given. No logic. Simply, "uphold." No explanation. Personally I think they are chicken shit, afraid to be the ones to stand up straight, look DPS straight in the eye and tell them they are out of compliance with the ADA, which is a major federal violation. It is going to bite them in the ass.

Unfortunately the EEOC takes forever to perform investigations. We have an investigator, a case number, and can hardly wait for the day when DPS has their ass handed to them. I can't wait until we are able to get them for the civil rights suit (lack of ADA compliance, ADAAA compliance, defamation of character, pain and suffering, loss of wages, the list goes on...)

Our attorney will have the appeal done by the end of the week. Sheesh that's tomorrow already. When will this end? 22 months of a living, breathing nightmare, and no end in sight.

Community

What does a "community" consist of? Is it a group of people that meets in a building? Is it a subdivision filled with homes? What of those within those houses? How about those that are home-bound, so they make a community of their own by reaching out and creating an online "community," a web group of people with the same disease? It is hard to feel I am the only person who is trapped at home who exists every day just to have a couple dozen seizures, munch on something, pet my pups, and make sure my couch/blankets/heating pads don't move. If I can, I blog in this, my journal, which serves to distract myself from the pain of the day, so I can keep myself away from all the bottles of narcotics just a little bit longer until I'm due for my next dose. It's not like I have any other way to spend my time!

However, apparently by not being in physical attendance, I have chosen to "walk away" from the church community. I think it is incredibly unfair to say I was only a part of it when I was physically there, giving of myself. I guess every time I was in the hospital for the 20 surgeries and other random issues, I wasn't part of it either. I guess I have a lot of nerve getting sick! My husband went on Sundays alone for over a year, until his work schedule no longer allows; when he went and was asked about me and what could be done to help, he said just visit, call or email, please! Dozens agreed to do so, but guess how many did so? You got it. When he came home each time and told me who would be calling me or messaging me, I could hardly wait. Hours, days, weeks passed. Those who stare at the ceiling all day know how very long, how when we go to bed each night not having spoken to a soul, years have gone by, the heart broken a little more each sunset, but holding onto hope that when the sun comes up again someone will follow through on their word.

Is it any wonder that 1/3 of those stuck at home suffer from suicidal ideation, and those with chronic disease are 20 times more likely to commit suicide?

I care for the people in attendance, but there is a tremendous amount of hurt by the ones who have been in a leadership position over the years, rather like a clique of sorts. It was a leader who told me she knows she is wrong to not keep in contact with me but it's easier for her because she doesn't like to see what this disease does to me, so she chooses to ignore me, knowing it's wrong. It was a leader who after having us in their group for two months and meeting in our home weekly, said they were bending over backward for us--not sure having a rotation in our home is bending over backward, but that statement was horrendously painful. After joining an online community full of these leaders, at their urging so they could keep up with my situation--though they wouldn't discuss any of it when I tried to talk about it there--both of us would bring up situations and one of the main leaders chastised us for expecting us for him to keep up because he knows SO many people online and things to do at the online group. The first thing that came to mind was how when I said that to him a few years back, he told me I needed to shut off the computer b/c it's taking time away from God if there's that much on there I'm paying attention to. Maybe that goes both ways if if members of the online community can't be heard. (I did leave the online group after a couple months, because when I tried to discuss heavy stuff, it was ignored. What's the point of being there if the few people that asked me to come there don't even acknowledge I'm alive? No one there noticed I left anyway, and I am not surprised.)

So, are the home-bound no longer members of the community because they can't physically participate?

I think the hardest part of all this is the sudden realization that I was not actually part of the community in the first place. I was never part of the "in" crowd. The groups have been the same since I started 6 years ago. I am tired of always trying to keep everyone happy. No time for it. I am at peace with myself. I am not the one who initiated and sent out some really hateful stuff to people in February, which we left alone as long as we could but after growing increasingly confused and concerned about the odd conflicting information sent to two different people, had to check in and find out what the truth really was because it made a huge difference in our family. That is for that person to deal with and only she knows if she can live with what she responded with or not. That's between her and God, not me.

As for that topic, I'm done. It's not worth my health. There is a fantastic quote from the movie The Doctor:

June: My disease, I see it giving me certain freedoms I never allowed myself.
Jack: Yeah, like being incredibly hostile?
June: Like being honest and expecting people around me to do the same.

As for what impacts my daily life, how I live sleep and breathe, I still have these seizures every single day. NY should receive my imaging from CT scan #54 within a week, then a week or so for some answers as to what specifically I did. Those of us that have seen it have all the same areas of concern, bends in the rods, vertebrae that appear fractured, on top of already knowing they've all spit off a bunch of bone spurs and are all herniated. (I can't help but not understand how people can bother going to PT for one or two herniated discs. All of mine are. Every. Single. One. And I'm going about my life. But I've known so many people in the "normal" world who go running to the dr wanting help and therapy for one or two bulging discs. Good Lord I'd climb Mt. Everest if I that was me!) My scapula feels better than at first at least, and I'm grateful for that.

Pain prevents me from doing a lot of stuff so it's a constant battle to get things done, right down to taking a shower. How am I supposed to be a member of any community when I can't even take a shower more than once every week and a half? It's humiliating.

I have to go use up 1/2 of today's spoons putting wet clothes in the dryer, and the other 1/2 cleaning up what my Border Terrier is vomiting up right now.

Forget it

I'm not doing the testing. I'm calling first chance I had to let them know since I received the testing letter Friday night after hours, to please let me out of the $50 charge for lack of 48 hours' advance notice of cancellation.

It's not just about going without pain meds. It's not just about the pain. For those of you who have been reading for awhile, you remember after I fought my way back off the ventilator and spent all those weeks in the hospital relearning to walk and talk when I was 28. You remember the long nights alone in a room day after day filled with 6 1/2 hours of intensive remember the nurses hearing me cry as they walked by, coming in, pulling up chairs and sitting down; telling me while I call patients like myself who refuse meds "stubborn" they prefer to call them "dead" because of patients they have that try to refuse meds, playing the tough guy. Their pain levels spike, blood pressure goes through the roof, etc., and they end stroking out and/or dying.

I will not go the 48 hours without. I take my narcotics and other painkillers and anti-seizures etc every 4 hours. I'm not risking anything. I'll just have to not have the test.

Mortal sin?

Do you think suicide is a straight path to Hell?

Or could it be possible that God, in infinite wisdom seeing into our very being, understands the desperation in which a person may end things on their own timetable instead of that of God's? Would he take us into his arms, forgiving and accepting us to stay with him forever, knowing how impossible a task it was to just sit and breathe through non-stop pain, trying to get through the endless day?

Is it really suicide when someone living in a cloud of confusion caused by relentless pain takes too much medication, not being able to remember their last dose of meds? Does God understand taking one extra dose that can be the very end was simply an act filled with the one remaining sliver of hope of getting even a minuscule amount of pain relief?

Will God accept us with our mortal mistake and let us live and love him at his side forever? Or will we be banished to Hell?

Would that Hell be any worse than the pain we have here?

Saturday charity check-in

I belong to a wonderful Yahoo group. It's a small gathering of some very strong-willed, like-minded women using their crafting abilities to make items for charity. We have a database of charities we are in involved with, including contact information for other members in case they are looking for a new charity to help.

We have an annual goal of how many items we would like for charity a year as a group. Last weekend, the total for the 137 of us is 14,395. **This week's total is at 14,997.**

What will it be tonight? How much progress have we made in one week? I can hardly wait to find out! I'm having such a great time with this. With all of the wonderful yarn I was blessed with, I can pay it forward to these folks in need. I'll update the number again later when the (very patient) moderator is done with the counting.

My count as of last night was 16 caps for NICU/school programs, 4 dishcloths for shelter, 1 potholder, 1 small child's play clutch, 1 scarf, 3 squares.

It may slow down a bit this week. If I didn't know better I'd say every speck of collagen in my body is staging a revolt.

101 Ideas to Empower Persons in Pain to Survive & Thrive

This is long but full of GREAT info. It is from the American Pain Foundation .
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101 Ideas to Empower Persons In Pain to Survive & Thrive!

As you all know, just getting through any day with persistent pain is a challenge.

These are easy-to-do, empowering tools and resources to help you better manage your pain, improve your care and, ultimately, enhance your quality of life.

Remember to have fun—and seize the day!


Self-Care

Relaxation/Meditation

1. Seek out things that make you laugh—remember, laughter is the best medicine!

2. Slow down—and breath deeply…

3. Use aromatherapy—relax to your favorite scents.

4. Meditate, with a group or by yourself.

5. Listen or make music (i.e., play a CD, sing or play an instrument.)

6. Get a massage by a professional masseuse – or someone you love…

7. Take a long bubble bath and light some candles.

8. Buy a bouquet of flowers to cheer up your surroundings!

9. Grow something—commune with Mother Nature!

10. Stir your imagination—imagine a pleasant experience, moment, sensation…

11. Make or craft something (i.e., knit a scarf, do pottery, build something, do woodworking, etc.)

12. Go to an outdoor concert, and don’t forget to pack a picnic.

13. Treat yourself to a manicure and/or pedicure. Be a Queen for a day!

14. Explore an antique store—lose yourself among the treasures…

Cognitive/Mental Strategies

15. Practice mindfulness—be in the moment…

16. Try art therapy (i.e., paint or draw a picture that shows how you feel!)

17. Use narrative therapy (i.e., write your pain experience.)

18. Keep a gratitude/affirmation log (write down three things you’re grateful for each day.)

19. When depression and/or anxiety hits, don’t fight it. Know it’s a part of the natural pain experience. But don’t hold on for too long…

20. Accept that everything you’re feeling is real and normal.

21. Take a class, learn something new—and stimulate your mind!

22. Wear a bright color—they excite the senses!

23. Reflect upon affirming, positive memories…

24. Read a great book—or a breezy romance novel.

25. Express your true and authentic self. You’re the only you!

26. Think positive, affirming things about yourself.

27. Take a trip, even if it’s a virtual one.

28. Seek support through a professional pain counselor.

29. Make a change and surprise yourself (i.e., get a new haircut, try a new recipe, etc.)

30. Get dressed up and put your make-up on, just because it makes you feel good!

31. Keep a positive attitude, hang in there and keep the faith!

32. Practice appreciation for your healthcare providers—more often than not, they’re trying their best to help…

33. On a bad day, remember what Scarlet O’Hara said, “Tomorrow is another day!”

34. Notice and appreciate the splendor season changes…

35. Learn a foreign language…or two! Exercise that part of the brain that doesn’t read pain signals.

36. Choose something you love, and do it every week, same day and time. A joyful routine gives you something sweet to look forward to…

37. Don’t let your pain define you. Remember that while pain is now a part of your life experience, it’s not your identity.

Care of the Body

38. Exercise regularly and keep your body moving. Hydrotherapy in warm water is especially effective with pain conditions.

39. Eat a healthy diet (fruits, vegetables, lean meats, etc.)

40. Avoid or quit smoking!

41. Practice good sleep habits—enjoy waking up refreshed and renewed.

42. Be open to alternative and complimentary therapies (i.e., acupuncture, guided imagery, etc.)

43. Have realistic expectations about therapies (i.e., have you given your physical therapy regimen enough time to help?)

44. Educate yourself about your pain condition. But don’t obsess and let it consume you…

45. Listen to your body talk—you know it better than anyone else!

46. Learn to say “no”—avoid stress by not over-burdening/committing yourself.

47. Spend time in the sun—and don’t forget that all-important sun block!

48. Practice good posture. A well-aligned and supported spine is virtually guaranteed to help any pain condition.

Relationships

49. Do something nice for someone—it feels good, and that energy is sure to come back your way.

50. Learn to forgive those who have disappointed you throughout your pain experience; anger is further fuel for pain!

51. Adopt a pet. Unconditional love is good for the soul…

52. Give someone a hug—who knows, you might just get two back!

53. Volunteer for your favorite charity, school or organization. Doing good is chicken soup for the soul!

54. Throw yourself a party. Celebrate an accomplishment with family and friends!

55. Get involved in your community (i.e., attend neighborhood council meetings, help plan a block party, etc.)

56. Seek out fellow chronic pain sufferers through on-line discussion boards and support groups at medical centers. These bonds could last a lifetime.

57. Don’t forget about lovemaking with your partner. Intimacy is second to none to revive the soul and senses!

58. Spend quality time with a child or children (yours, nieces or nephews, etc.)—they’ll help you see the world with eyes of wonder!

59. Have an afternoon tea with some girlfriends.

60. Accept an invitation to a party or other social event, even if you’re in pain. It’s great misdirection—and you’ll probably find yourself having a dandy time!

61. Be open to talking to family and friends about your pain experience—and answering their naturally inquisitive questions. If they’re curious, they probably care. Try not to shut them out…

62. Remove toxic people from your life—as stress and strain that comes from bad relationships makes pain worse. It’s appropriate to walk away from inappropriate people!

Assertiveness

63. Remember it’s your body—and ultimately all possible treatment options are your choice.

64. Be prepared for your doctor visits (i.e., have questions ready, be educated about your pain condition(s), etc.)

65. Partner with your doctor. You’ll get better pain care results if you work as a team.
Find a good advocate at your health insurance company.

66. Bring a family member or friend with you when you go to a doctor’s appointment. They can advocate for you—and it’s good for your doctor to know someone cares and is watching out for you.

67. Examine and weigh your therapy options—the biggest “guns” may not be the answer for you.

68. Don’t let your doctor pressure you into a therapy that you don’t want to do!

69. Interview your pain management provider (i.e., What kind of therapies do you support for my condition?, Are you open to alternative/complimentary therapies?, etc.)

70. Remember, one size doesn’t fit all when it comes to pain treatments. We’re all unique—and what helps one person may not help another.

71. Seek out references with any doctor referral (i.e., talk to other patients, look up his/her standing with the state medical board, etc.)

72. Make sure your treating healthcare professional is assessing your pain level during each visit—remember, pain assessment is “the fifth vital sign.”

73. Find out if your hospital and/or clinic has a “Patient’s Bill of Rights”—and if so, make sure your treating healthcare professionals are following it.

74. Learn about the potential side effects of any and all medications you are considering or presently taking. Sometimes their adverse side effects can create more harm than the problem you’re taking the medication(s) for.

75. Run—don’t walk!—from any physician or other healthcare professional who doubts, dismisses and/or discounts your report of pain!

76. Encourage your family and friends to educate themselves about your pain condition(s) (i.e., provide them with website resources, articles, etc.)

77. Educate yourself about all of your therapy/treatment options (including complimentary and alternative choices)—this will enable you to make the best, most informed decisions about your pain management care.

Clinical Advice

78. Using a rating scale such as 0 to10 (0 = no pain, 10 = worst pain) is a useful way to communicate your pain to others and assess changes in your own pain.

79. Use the rating scale to rate how much relief you are receiving. For example, if your pain therapy relieves your pain from a “10” to a “7”, this is a good step. But knowing your pain is a “7” should suggest that you still require additional help.

80. Prevention of pain is key. Anticipate things that bring your pain on (exhaustion, dehydration, stress, etc.) and make every attempt to prevent pain versus responding only when it happens.

81. When taking pain medication, always consider what non-drug treatment you could use along with it. Using heat/cold/massage/relaxation can diminish anxiety and distract you from the pain until the medication can begin working.

82. Discover accurate and effective words to describe your pain (i.e., burning, stabbing, aching, pins and needles, electrical, throbbing, etc.) to help your healthcare provider with diagnosis and treatment.

83. For chronic pain problems, it is generally better to take medications on a regular, around-the-clock schedule rather than only on a “prn”/as needed basis only when pain is severe.

84. Fortunately, there are many choices of analgesics (be it traditional, complementary or alternative)—so if a particular pain therapy that has been prescribed doesn’t work or causes side-effects, ask to try another.

85. In general for chronic pain, long-lasting medications are preferred to offer several hours of undisturbed sleep or activity.

86. If your doctor prescribes physical therapy, be sure to find a therapist you have a repore with. Explain your symptoms carefully, and go over your doctor’s report together. Also be sure to immediately alert your therapist to any pain you’re experiencing as a result of a therapy exercise.

87. “Breakthrough pain” is pain that occurs in episodes between doses of medications. Discuss this with your physician to determine if breakthrough medications are needed.

88. Inactivity or decreased function is a major problem in chronic pain and results in muscle weakness, dependence, depression—and this cycle only worsens over time. Try to maintain activity if at all possible.

89. Depression and anxiety are generally an integral part of the pain experience—and can become severe. Don’t hesitate to tell your pain management provider about these feelings and indeed ask for a referral for a support group and/or psychologist. Your doctor should know psychologists who specialize in pain.

Web-based Resources

90. Check out The Intractable Pain Patient’s Handbook for Survival by Dr. Forrest Tennent. Download a copy here: http://pain-topics.org/pdf/IntractablePainSurvival.pdf

91. Here’s a wonderful resource to help the people who care about you. Surviving a Loved One’s Chronic Pain by David Kannerstein, PhD and Sarah M. Whitman, MD. Download a copy [http://www.ppmjournal.com/PDFs/PPM_J...annerstein.pdf

92. Here’s a great, up-to-date resource about pain medications! American Chronic Pain Association’s 2007 Medication & Chronic Pain Supplement. Download a copy http://www.theacpa.org/documents/ACPA%20Me...007%20Final.pdf

93. Get educated and informed about your pain condition(s)! Pain Information Library sponsored by the American Pain Foundation. http://www.painfoundation.org/page.asp?fil...brary/Index.htm

94. Go to the American Chronic Pain Association’s website and read their “Ten Steps from Patient to Person” http://www.theacpa.org/people/ten_steps.asp

95. Review For Grace’s “Women In Pain Bill of Rights” to get a better understanding of what you should expect in your patient/doctor relationship. http://www.petitiononline.com/winpain/petition.html

96. Go the National Pain Foundation’s “My Journey” section and find links to patient support groups throughout the US:
http://www.nationalpainfoundation.org/MySupport/LinkDirectory.asp

97. Go to PainTopics.org’s website and find an excellent section on pain patient resources, tools and information: http://pain-topics.org/patient_resources/index2.php#chronic1

98. Download a notebook from the American Pain Foundation to journal your pain experience: http://www.painfoundation.org/Publications/Notebook.pdf

99. Visit Pain.com and see their full array of consumer support tools and forms: http://www.pain.com/sections/consumers/pain_support/pain_tools/

100. Become a member of American Pain Foundation’s thriving on-line PainAid community. Take the first step http://painaid.painfoundation.org/

101. Power Over Pain is a grassroots movement that encourages those in pain to become advocates in their own communities.

Join the charge to put pain on the map as a major health issue:
American Pain Foundation