Saturday, April 30, 2011

May is EDS Awareness Month in Nevada Again!

All over the country, EDSers are trying to make their mark by getting their states to make May Ehlers-Danlos Syndrome Awareness Month. Last year, I was able to get Governor Gibbons to make Nevada May EDS Awareness Month, but as some people don't know, it doesn't stop there. In most states, Proclamations are only good for one year, so in March I went to work again. We have a new Governor in Nevada, Brian Sandoval, and with a little effort from myself and the folks at his office, we now have a new Proclamation! Officially, May is Ehlers-Danlos Syndrome Awareness Month in the state of Nevada for 2011! I am holding the copy signed by Governor Sandoval, and couldn't be more happy!



Getting a Proclamation passed is important for a number of reasons. It is the first step in creating statewide awareness of EDS. It creates more validity when doing advocacy work; for instance, it is easier to convince a hospital to put up EDS posters when the Governor of the state feels it is important enough to be recognized. It is also easier to get media coverage, and specifically getting a Proclamation passed can be enough cause for some local media outlets to run a story on Ehlers-Danlos Syndrome. Also, we EDSers have long been "recognizing" May as EDS Month, but until recently, it wasn't anything official. As of this month, we have a handful of states that have Proclamations. The more Proclamations, the easier it will be to get a National Ehlers-Danlos Awareness Month in May. And, as we know, the final result of more awareness is more funding, more research, better treatments, and easier diagnoses. 

Now that I have the Proclamation in hand for this year, I am on my way to getting some more stuff done locally. I have already contacted all of the media outlets in the state and given them press releases. Hopefully, at least one of them will find our month newsworthy. I am making copies of posters at the print shop (like Kinko's) this week and will be taking them around to all of our local hospitals, pediatricians, and anywhere else I can think of, and trying to get them placed. By bringing a copy of the Proclamation, it makes the whole concept seem more official.  

It doesn't take that much work to get a Proclamation passed in your state; and, just know, you can work on this any month of the year - don't think it is too late. If you are interested, go to EDS Network C.A.R.E.S. Proclamations Facebook page and send them a message. They will get you all of the info, and if you need, they can even provide sample templates.  And, if you get a Proclamation, don't forget to send a thank-you letter to the Governor. A template is provide below. If you are interested in making your own flyers or posters, you can just download them from the EDS Network C.A.R.E.S. Facebook link and pass them out. If you aren't up for working on a Proclamation, you can still pass out flyers and posters. I've found Kinko's to be the cheapest place for making them here in town. 

Here are the links again:
Proclamation Template (send this and a letter to your Governor asking them to pass a proclamation)
Thank-you letter template for Proclamation (if you get one passed)
Download flyers/poster ("like" the page first)

I will post more info on May EDS Awareness Month soon, but happy May! Gentle high-fives to my fellow zebras! :)

xoxo
dani

Spinal Cord Stimulator: Final Outcome

Hi, lovely friends! It's a tad late, but I have just been getting up to the "norm" and feeling able chronicle this entire experience.

Just to recap, for those of you who mentioned you just found me and this info, here are links to the other neurostimulator posts, in order, with this being the fifth and possibly last:

  1. I Need Your Opinion: Neurostimulator Implantation 
  2. Q and A: Neurostimulators 
  3. On with the Spinal Cord Stimulator and Off to the New POTS Doctor 
  4. Spinal Cord Stimulator: Psych Eval and Approval

About 12 days ago, I had the trial stimulator procedure done to see if it would help the ferocious flank pain I live with daily. For the actual procedure, I was taken into a room with a bunch of other patients who were getting similar surgeries. I went to the bathroom to change into my gown. There were no cameras allowed in this waiting area (first hospital I have had that rule at!), and no family allowed either. Sat in a chair, next to a bunch of other folks. I got my IV hooked up and waited; there was one stimulator surgery before mine.The drug rep and Dr. Pain Relief came in briefly to talk to me, and then I was walked into the surgery room.

While in the surgery room, I was laid stomach down, gown open to see my back, and there were quite a few people in the room. A very neat technique they used, there was an x-ray tech that had a cylindrical x-ray machine up a ways, but over my back then entire time the surgery was going on, and he was able to take live feed to see where the leads were in my spinal column, and he could also take still shots. I got to watch most of this too, which was really interesting. After scrubbing me all up, they finally pumped some sedation into my IV, and thank goodness! It was a mixture of Fentanyl and something else. A few minutes later, I felt a bit more calmed down, but I was still coherent.

The doc and rep worked together, the doc working and the rep talking, and both of them trying to place the leads where they would best work for my pain. The rest is shown in the video below (nothing graphic in video). After the procedure, I sat in recovery for a bit, the rep worked with me for an hour and a half to program the device and try to find the best way to stimulate me, the best area, intensity, etc. I have a feeling this is what started the extreme aggravation of the nerves. The rep told me he normally took about 5 minutes to program someone's device. With as much time as he spent turning mine ON, OFF, HIGHER, LOWER, etc., it felt like I had gone to the gym and strained all the muscles in my flank area. But, because we finally got the area correctly, meaning we got the electrodes to vibrate in the exact area of my pain, we were done and I was on my way home. From here, you may watch the video to find out about how it all went.


As you watched, the spinal cord stimulator did not work for me. I was in extreme pain for the first few days, and on the verge of extreme pain much of the 8-day trial; I couldn't even have the spinal cord stimulator turned on very high, or even turned on at all. I went back in to the doctor's office half-way through the trial to get extra pain killers and some Lyrica to just try to calm the nerves down. It basically felt like I had taken the flank pain area that causes me to cry at night sometimes, and someone had twisted it like they were wringing out a dishtowel. The stimulator just added extra pain on top of the already awful pain I have.

I don't know what other information to give you, other than to tell you that I am not against these stimulators. I can see how they would work in someone with another type of pain, or pain in a different location, and I was the only patient in the entire clinic that has had this sort of a reaction - they have been inserting these for 17 years. For Ehlers-Danlos patients, they won't help the entire problem, so they would only really be helpful for one specific location, if there was one problematic area that couldn't be treated by other means. The bad side of it, some patients never get used to the vibrations that the stimulator uses to "trick" your brain - to have your brain focus on those electric pulses instead of on the painful area. And, of course, some patients it doesn't work well enough to go through the actual implantation.

To describe the feeling of stimulation is rather difficult, but I will do my best. If you will, imagine one of those handheld massagers they sell at places like Bed, Bath and Beyond. The sensation you feel when you place it on your skin is that of a small vibration. Now, imagine that massager being placed under the skin, in your area of pain and it being turned on, in that same spot, pretty much all the time. If it did relieve the pain, it certainly would be something that would take some getting used to! For most people I have talked to, and the way I felt beforehand, I would much rather take a vibration feeling in my flank than a horrible feeling of pain. Unfortunately, for me, it was flank pain that was worse than normal, so terribly bad, and a vibration on top of it. Super painful and super annoying. Though, that was just me. Who knows how it would work for anyone else, especially because pain is so individualized. Either way, it feels like a massager turned on in the same location, under your skin, all the time...it was a very strange sensation.

The stim from behind, wires attached

Close-up of the bandage on the back.

The Generator/Battery Pack/Programmer

The removal of the leads, wasn't bad at all.

You can see the leads were stuck inside and went all the
way up the spinal column, but to keep them from slipping out, the were
stitched down, then taped.


The best part of the whole experience was the package that arrived from Girlfriend: It was my get-well box filled with all sort of vegan goodies from Pattycake Vegan Bakery in Columbus, Ohio. There were chocolate and vanilla cupcakes, a blueberry muffin, and an iced sugar cookie shaped like a bunny. For those of you who aren't vegan, you would have no clue these are vegan goodies - couldn't tell the difference! I ate one a day, and boy, did they bring a giant smile to my face! So did Girlfriend! :) Thanks!!!

It's been four days since the leads have been removed, and I am more than thankful. I really can't be happier that I had this trial. It was more pain than any of my surgeries caused, but it was well worth it. I got to test out a spinal cord stimulator before it actually was implanted in me, which would have been a major surgery. This was painful and pleasurable. Now I know it doesn't work for me...just have to keep hope that there is something out there that will help keep the flank pain under wraps, and then, of course, deal with all the other daily things that come along. I am pretty much back to normal now. Still taking the Lyrica and Valium for a few more days to calm down the nerves a bit, I can't bend over to the ground yet, or twist too far - my muscles/nerves hurt too bad. But, other than that, I am pretty much "me" again. And that is a good feeling. :)

Thanks for following all of this. I hope it was informative, and while it didn't work for me, if you are considering it, at least you have an insight of the process, an idea of what goes on, and my wishes that it works for you. 

xoxo
dani

Wednesday, April 27, 2011

House MD's Exec-Producer Gave Me a Jingle...

I watched an episode of House that fired me up a week ago, so I wrote a little blog post. Little did I know that post would make its way around the interwebs so quickly, nor did I know it would cause such a commotion in the world of forums, Twitter and Facebook. But, when I got word of the buzz, I decided I wouldn't stop there. For me, stopping short of something to help EDSers is just not something I am able to do. I give it my all when it comes to us, and so I continued to speak out...by writing letters to all of the executives at FOX, anyone and everyone in the writer's group for House, and everyone else I could think of, including Rupert Murdoch himself. As is with contacting media sources, though, which I know from my prior profession, I wasn't expecting anything back...or, at most a form letter response. I was quite surprised when the phone rang.

To give a little back story, the post I wrote was intended to get people to think; to think about how their actions affect others, how writing a TV drama episode can actually affect people in the real world, how we as EDSers deal with stigma in our daily lives and not only suffer from pain and trauma, but also from the sadness and frustration of people writing us off as psychological cases. I know that in writing my blog post, I wasn't going to change the world, I wasn't going to get the producers of House to create a different sort of a show, nor was I going to get any of my readers to miraculously find a way to make Ehlers-Danlos Syndrome stigma free. My intent was accomplished: I got people talking. All of my readers had wonderful things to say, whether they agreed or didn't. Some were just happy EDS was mentioned on a television show, others were furious and felt they would now be looked at as hoarders or mental cases. My goal was to get us all, the TV show folks, the readers, the random Google searchers, to just stop and think a moment. And, in the end, I wanted those with Ehlers-Danlos Syndrome, like me, to just get some recognition.

Onto the phone call...

I was feeling very ill...I had my spinal cord stimulator placed in my back a few days prior and I was in awful pain. I wasn't up for talking on the phone, but for some reason I answered it anyway. Boy, am I glad I did! David Foster was on the other end, and was very pleasant to speak with. He offered his condolences for the way the episode made me feel, and also said he was personally touched while learning about Ehlers-Danlos Syndrome. He made me feel very at-ease, and though I was in a lot of pain, I was so happy to hear from someone who seemed very genuine and down-to-earth. He used some medical terms, which caught me off guard, and I wondered right away if he had a background in medicine. He remained vague, since I am sure he had to given the position he was in, but at the same time made me feel very comforted in knowing that he researched EDS a lot for the show, and while they didn't showcase a lot of manifestations, he hoped people would use the show as a tool to research the illness themselves (which I know a lot of people have done). Not only did he leave me with a great vegan tidbit, he left me with his information to contact him if I ever felt the need. He also said a formal letter would be on the way shortly.

A day later, via FedEx, the letter arrived. I got what I wanted...a little bit of recognition. And, therefore, while I don't agree with the way the episode represented EDS, I am happy that the writers at House took the time and effort to respond to my concerns.


The letter reads as follows:

"Dear Ms. Davis:

I am writing in response to your letter of April 15, 2011. First, let me thank you for you thoughtful comments and your interest in our show. We appreciate the support.

As a long time viewer, I am sure you know that House is a show about the "one in a million case", the odd presentation of a rare disease that has eluded the detection of other smart doctors. These "diseases of the week" are inherently complex with many symptoms and a wide range of manifestations. As such, there are many, many individual, unique patient stories that could be told. However, we can only tell one person's story, and even that story is subject to the limitations of network television.

I understand that House will likely be the first time most of our viewers have ever heard of Ehlers-Danlos Syndrome. I can only hope that this exposure will motivate viewers to learn more about EDS through other excellent resources such as your blog. Our research into EDS for this episode has led all of us to have a deep appreciation for all who live with EDS. We can only hope that our viewers will gain similar awareness.

Sincerely,

David Foster, MD
Co-Executive Producer, House"

I feel content knowing that, at the very least, I got an extremely prompt response from one of the writers and producers of the show. I also had a chance to get a little background info on him, since I was curious why he sounded so well-versed in medical terminology, as we EDSers often become!

According to CNN, "[Dr.] Foster wangled a job as writer and medical consultant for the hit Fox network TV show "House" by impressing the show's producers with his Harvard Medical School education and his work in the trenches at Beth Israel Hospital and the Harvard School of Public Health."

So, there you have it - a writer who is an actual doctor, executive producer, and kind enough to promptly respond to my concerns. That is more than I expected, and I will certainly take it with a smile. There will still, I am sure, be those of you out there who think this is great, and those who think this isn't enough; that is fantastic, keep the conversations flowing and never give up, never let something stand in the way of what you believe in, especially when it comes to finding help for Ehlers-Danlos Syndrome. 

Lots of love to you all. 
xo
dani

Sunday, April 17, 2011

Spinal Cord Stimulator: Psych Eval and Approval

In order to get approved for the Spinal Cord Stimulator, as I mentioned before, I had to undergo a psychological evaluation. I went to the psychologist's office 2 weeks ago, went through the charade, and went home to wait. A week and a half later, I was notified that I passed the evaluation, and therefore would be allowed to continue on to the trial round. I am thrilled I get to do the trial stimulator, and am keeping my fingers crossed that it helps the flank pain. I will be at the surgery center tomorrow morning getting the leads inserted!

For those of you interested in the psychological evaluation, the rest of this post is dedicated to the appointment, and I am writing it so you have some sort of idea what you are in for. I certainly would have loved to have had some insight to this process beforehand. I jotted down the names of the tests while at the office so I could leave them in this post for you. Hopefully this helps anyone who may have to undergo this same scrutiny.


The psychologist's office was supposed to send paperwork for me to complete before my appointment, but they rushed me in due to a cancellation, so the papers hadn't even arrived in the mail. It wasn't a big deal, it just made the appointment even longer. I was in the office filling out questionnaires and completing multiple choice and true/false tests for roughly four hours, then I had an hour-long appointment with the doctor. By the end, not only was my back/flank on fire, my hands and wrists were hurting me so much I had to go sit in my car with ice packs on them for a half-hour before I was able to drive away. While I understand that psychological factors play a big part in patient care, and especially treatment for chronic pain patients, I was appalled at the length in which I had to prove my pain to a doctor who had never even met me. I was frustrated that I was being asked asinine questions like, "Do you enjoy science?," "Would you like to be an artist?," and "Was there ever a time when you were a child that you were considered a trouble-maker?"

I found myself over-thinking every question during the appointment. There were multiple questions asking if I enjoy crime shows. If I answered "yes" to these questions, would it make me seem like I was interested in crime, murder, violence? I love the show Law & Order: SVU, but, what would it mean for my horrific flank pain if I said I enjoy watching it? I also had to answer a question about being gay, like that has anything to do with my flank pain. Hours and hours of questions, mostly personality tests. I was hurting so badly, I was having a hard enough time focusing, let alone filling in the bubbles on the scantron sheets. I barely finished, really had to push myself to complete all of the tests. There must have been over 2,000 questions, and that isn't an exaggeration. Information regarding the two largest tests is below.


LAQ-2: The Life Assessment Questionnaire (click here to view entire test):

According to HealthNetSolutions, "The LAQ-2 is a well-validated instrument for determining the likelihood of deception and malingering in the chronic pain population. The majority of the LAQ-2 requires patients to indicate if they are experiencing various physical and psychological symptoms. They are queried about symptom complaints across all major bodily systems. Patients are also asked questions measuring a variety of beliefs such as perceived suffering, cynicism, and general health."

Deception and malingering? Basically, this test is to decipher whether or not you are lying about your pain.


The Minnesota Multiphasic Personality Inventory, Version 2 (MMPI-2):

According to Wikipedia, the "MMPI is one of the most frequently used personality tests in mental health. The test is used by trained professionals to assist in identifying personality structure and psychopathology." Topics: concern with bodily symptoms, depressive symptoms, awareness of problems and vulnerabilities, conflict, struggle, anger, respect for society's rules, stereotypical masculine or feminine interests/behaviors, level of trust, suspiciousness, sensitivity, worry, anxiety, tension, doubts, obsessiveness, odd thinking and social alienation, level of excitability, people orientation. A lot of the questions on here were meant to figure out textbook cases of depression, bipolar disorder, schizophrenia, etc. I was concerned if having bipolar disorder and PTSD would ruin my chances of trying the stimulator.

Since I wasn't able to find a copy of this test, thankfully a kind person on AntiPolygraph.org typed out the first 75 (567 total) questions from the MMPI-2. I don't attest to the accuracy of these questions, but I can tell you they all look very similar to what was on the test I took. They are as follows (and no, this isn't a joke, these are really the questions):

TRUE OR FALSE

  1. I like mechanics magazines
  2. I have a good appetite
  3. I wake up fresh & rested most mornings
  4. I think I would like the work of a librarian
  5. I am easily awakened by noise
  6. I like to read newspaper articles on crime
  7. My hands and feet are usually warm enough
  8. My daily life is full of things that keep me interested
  9. I am about as able to work as I ever was
  10. There seems to be a lump in my throat much of the time
  11. A person should try to understand his dreams and be guided by or take warning from them
  12. I enjoy detective or mystery stories
  13. I work under a great deal of tension
  14. I have diarrhea once a month or more
  15. Once in a while I think of things too bad to talk about
  16. I am sure I get a raw deal from life
  17. My father was a good man
  18. I am very seldom troubled by constipation
  19. When I take a new job, I like to be tipped off on whom should be gotten next to (this question isn't correct, but it was something about getting info on who to be buddy-buddy with at your new job)
  20. My sex life is satisfactory
  21. At times I have very much wanted to leave home
  22. At times I have fits of laughing & crying that I cannot control
  23. I am troubled by attacks of nausea and vomiting
  24. No one seems to understand me
  25. I would like to be a singer
  26. I feel that it is certainly best to keep my mouth shut when I’m in trouble
  27. Evil spirits possess me at times
  28. When someone does me a wrong I feel I should pay him back if I can, just for the principle of the thing
  29. I am bothered by acid stomach several times a week
  30. At times I feel like swearing
  31. I have nightmares every few nights
  32. I find it hard to keep my mind on a task or job
  33. I have had very peculiar and strange experiences
  34. I have a cough most of the time
  35. If people had not had it in for me I would have been much more successful
  36. I seldom worry about my health
  37. I have never been in trouble because of my sex behavior
  38. During one period when I was a youngster I engaged in petty thievery
  39. At times I feel like smashing things
  40. Most any time I would rather sit and daydream than to do anything else
  41. I have had periods of days, weeks, or months when I couldn’t take care of things because I couldn’t “get going”
  42. My family does not like the work I have chosen (or the work I intend to choose for my life work)
  43. My sleep is fitful and disturbed
  44. Much of the time my head seems to hurt all over
  45. I do not always tell the truth
  46. My judgment is better than it ever was
  47. Once a week or oftener I feel suddenly hot all over without apparent cause
  48. When I am with people I am bothered by hearing very queer things
  49. It would be better if almost all laws were thrown away
  50. My soul sometimes leaves my body
  51. I am in just as good physical health as most of my friends
  52. I prefer to pass by school friends, or people I know but have not seen for a long time, unless they speak to me first
  53. A minister can cure disease by praying and putting his hand on your head
  54. I am liked by most people who know me
  55. I am almost never bothered by pains over the heart or in my chest
  56. As a youngster I was suspended from school one or more times for cutting up
  57. I am a good mixer
  58. Everything is turning out just like the prophets of the Bible said it would
  59. I have often had to take orders from someone who did not know as much as I did
  60. I do not read every editorial in the newspaper everyday
  61. I have not lived the right kind of life
  62. Parts of my body often have feeling like burning, tingling, crawling, or like “going to sleep”
  63. I have had no difficulty in starting or holding my bowel movement
  64. I sometimes keep on at a thing until others lose their patience with me
  65. I loved my father
  66. I see things or animals or people around me that others do not see
  67. I wish I could be as happy as others seem to be
  68. I hardly ever feel pain in the back of the neck
  69. I am very strongly attracted to members of my own sex
  70. I used to like drop-the-handkerchief
  71. I think a great many people exaggerate their misfortunes in order to gain the sympathy and help of others
  72. I am troubled by discomfort in the pit of my stomach every few days or oftener
  73. I am an important person
  74. I have often wished I were a girl.  (Or if you are a girl) I have never been sorry that I am a girl
  75. I get angry sometimes

Hope that helps! I'm in awful pain tonight, but keeping my spirits up for the big day tomorrow. I am off to get some sleep. :) Love and strength to all of you!

xo
dani

Tuesday, April 12, 2011

House M.D. and Ehlers-Danlos Syndrome

If any of you caught last night's episode of House on Fox you are probably as irritated as I am. The episode ended with a diagnosis of Ehlers-Danlos Syndrome, which under most circumstances would be an amazing thing. I am usually thrilled to pieces at the thought of EDS being mentioned on a mainstream show; we EDSers benefit highly from the public being familiarized with our illness. Whether using it to raise money for research to help find treatment options or even a cure for EDS, helping physicians keep an open mind during patient diagnoses, helping to create an understanding and loving network of family and friends, or helping an EDSer understand their symptoms better, media is a very effective and highly influential tool. Unfortunately, bad media attention can be even more damaging than no media, and most of the mainstream documentation of Ehlers-Danlos Syndrome, in my opinion, seems to be unhelpful or even negative.


*Spoiler Alert*
In the episode, House's team was treating a patient, and as his team often does, they headed to the man's house to see if they'd come across anything to help diagnose his illness. While at the home, they ended up finding his wife hiding under some garbage; she was a hoarder who had turned their home into a disaster area. They took her to the hospital, too, as there was something obviously wrong with her. The wife had some serious mental issues, and they were trying to find out what triggered the hoarding. While in the hospital she had a heart attack. The doctors didn't mention any other symptoms during the entire episode. Simply: hoarder, mental issues, heart attack. At the very end of the show, the doctors came into the woman's room and told her the reason she had become a hoarder was linked to stress from several miscarriages. They said the miscarriages were caused from Ehlers-Danlos Syndrome and asked her if she thought she could have EDS. They told her they could treat her symptoms, but that she also needed psychiatric treatment. Mind you, not once did they tell her what EDS was or what the symptoms are. That concluded the episode.

In my opinion, the show seemed to make it sound like someone who has miscarriages can, in turn, suffer from mental illness and become a hoarder -- symptoms that result in a diagnosis of Ehlers-Danlos Syndrome.

I love House; I have seen every episode and watch it on my computer each week. I suppose, for House, it was normal and enjoyable. To me, though, EDS is wild enough to support an entire episode. If the writers would have focused on a "normal" EDS case with the mounds of symptoms we have I believe it would have made for a very House-style episode. At the very least, an explanation of EDS to the woman would have been sufficient. They mentioned nothing about severe pain, joint hypermobility, skin issues, GI problems, fatigue, heart problems or any of the other many symptoms we experience. They didn't talk about how EDS can be extremely debilitating, nor was there mention that some types of EDS are life-threatening. Instead, they focused the episode on mental illness. To top it off, they didn't tell her what her diagnosis was, as most doctors do, instead they asked her if she thought she could have EDS. How would someone know what EDS is in order to give an educated answer? Most doctors I see don't even really understand EDS, let alone a patient who is experiencing none of the typical symptoms of this genetic disorder. I feel the writers could have done a much better job, successively making a positive impact by helping to promote awareness. Instead, it was another show that made EDSers seem crazy. 

I was very upset by this, especially so, because a week ago I went to the doctor for my psychological evaluation - the first step in getting approval to have a Spinal Cord Stimulator implanted in my back to help the excruciating flank pain I live with every single day. I will give you the specifics about the appointment in a post soon, but to summarize, I spent 5 hours in an office trying to prove I have flank pain, that my Ehlers-Danlos Syndrome is real (apparently my stacks of medical records, info from all of my doctors and the geneticist's diagnosis don't prove enough), that I don't want to kill myself and that my pain is not just a product of my mental illnesses. The majority of the appointment was spent doing personality tests that were hundreds of questions long. It was emotionally and physically exhausting, and if I don't get a "passing grade," I won't be able to have the SCS trial. After all of this, watching an episode of House that portrayed EDSers' most prominent symptoms as psychiatric problems was extremely disappointing. 

While I have no control over what the writers of the show create, I do have a chance to take a stand. I am voicing my opinion, helping to spread awareness of Ehlers-Danlos Syndrome, and making a positive impact for the EDS community -- something House M.D. had a chance to do, but failed at.

I hope you are having a wonderful night. Continue to keep hope, be strong, and stand with me. In the face of negativity, we will be the positive light. 

xo
dani

Saturday, April 2, 2011

Is that a Bullet Proof Vest or a Heating Pad?

As you know, I am hoping to get the Spinal Cord Stimulator implanted soon, which will hopefully help the pain in my lower back and flank area. However; I have lots of pain in my upper back and neck area that won't be relieved by the SCS. Ehlers-Danlos Syndrome is to blame, of course. Lots of pain in the area is in the form of muscle spasms that occur from the scapula sliding around. My body tries to hold my shoulder blades in place by creating spasms all around the area, and while the body's logic might be on track, my shoulders still sublux or dislocate and the daily pain from the spasms alone can be very intense. I am sure you all know what I am talking about!

Laying on a heating pad tends to help this pain, along with the myriad of pain killers and muscle relaxers I take, and so that is typically what I resort to. No amount of natural stuff, stretching, massage (the little bit I can afford), etc., has been of any help. What do I do when I don't want to stay laying on my back, in bed, hooked to the heating pad for hours? I try the heat in the microwave heating pads, some I have even done posts on in the past since they help the neck or the lower back a bit, but they never can reach the exact areas I need around my scapula and in the mid-to-upper back area. And while the stick-on patches can help with some things, they never provide deep enough heat or can fit the entire area for this mid-to-upper back pain. Until now, I have been left out of ideas.

A fellow EDSer recently pointed me in the right direction, and I was so excited to try this new find. This new heating pad was rather expensive though (around $69 before shipping), so I added it to my list of items to purchase down the road when I could afford them. Low and behold, a UPS man knocked at my door a couple days ago and dropped off a surprise package from my amazing girlfriend...my new heating vest! (Thank you, Girlfriend!) It can be worn two ways, one to heat your neck and upper back area, and the other to heat your mid-back area. It provides moist heat, the best kind to penetrate deep into the muscles, and only requires being popped in the microwave for a few minutes, or it can be frozen and used as a cold compress. (I do realize microwaves aren't fantastic things to have around, but I do use them to heat up my heating pads, since all of the ones I like cannot be heated in the oven.) I find it stays hot for about twenty minutes, on average, and can be reheated again in just a couple of minutes. It can be worn while walking around or doing activities - it doesn't have to be plugged in. And, the best part, it seems to hit my "trouble spots" perfectly. Without further adieu, check it out!

The heat "cells" are on the mid-back here.


You can see the "cells" on the mid-back area.


Flipped over, the thicker area here shows the heat
"cells" in the upper-back and neck area.


The heat "cells" in the upper-back/neck area.


Upper-back and neck area.


I am wearing a size small, which is still a bit big on me. They only come in two sizes, this is the smallest one. It still reaches the areas I need it to, so it works for me! Spot clean only. It must be aired-out for 4 hours when done with it for the day, and it can be stored in the mesh bag that comes with it. It's available at Relax the Back stores or on their website. I am thrilled with my new heating vest, and I hope it helps some of you, too! 

much love and light!
xo
dani


*As always, I'm not getting paid to promote this, just sharing a great product to help those with EDS find some relief!