New information to be released on Relieving Pain in America
June 28, 2011 at 2:31pm
New information to be released on Relieving Pain in America. The Institute of Medicine (IOM) will release its report on Relieving Pain in America: A Blueprint for Transforming Prevention, Treatment, and Research Thursday June 29, 2011. The Power of Pain Foundation will release statement afterwards on the effectiveness of the report findings.
It is reported that the new numbers being presented in the report says that Pain affects more than 116 million Americans annually. It is a major cause of work disability and one of the most common reasons for taking medications. The IOM recently completed an investigation into the public health significance of pain in the US. Dr. S Mackey, a member of the IOM board reported at a conference last Wednesday that we would be surprised with the information in the report. We look forward to reviewing the findings.
Background
The IOM convened an ad hoc committee (called the Committee on Advancing Pain Research, Care, and Education). This committee tasked with addressing the current state of the science (pain research, care, pain education, and explored approaches to advance the field of pain medicine). The committee also offered the opportunity for public and pain related organizations representing the pain community the opportunity for input through several public meetings and online comments over the course of 2010 and 2011.
The report is scheduled for release publicly on June 29, at 11:00 a.m. EDT via an audio webcast. Register now to watch the live webcast or follow the IOM report information live on tweeter using the hash tag #relievingpain. After the presentation, the report will be available on www.iom.edu/relievingpain.
Register Here: http://action.painfoundation.org/site/R?i=Np51kQ9dqVBKMcQVGhoMxA
Power of Pain Foundation www.powerofpain.org
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Please do this experiment for me (POPF):
June 27, 2011 at 5:55pm
Please do this experiment for me (POPF): Take a wooden spoon handle or similar, stick it in your mouth, like a dog carries a bone. Bite down on it with your back teeth for 5 seconds. What do you feel? Describe any changes to your pain or reflex processes.
Then, take your thumbs and put them on your back molars (what ever ones you have furthermost back). Push up with your thumbs and tilt your head, to balance the pressure of the push. Again, What do you feel? Did anything change from the spoon portion. Describe any changes to your pain or reflex processes.
Thanks for helping… I am doing this for Doc who asked me to ask… so I am and will report any responses back to him. Please also tell me if you are a “chronic care person” or “healthy person”
What Does Safety First Training Offer?
June 20, 2011 at 11:55am
From CPR, first aid and automated external defibrillator (AED) training to injury prevention courses, blood borne pathogens training and community disaster preparedness education, Safety First offers complete, flexible programs that help your company stay prepared for virtually any life-threatening situation. First Aid/CPR/AED training courses combine lecture, demonstrations and video with hands-on training in a ‘practice-while-you-watch’ format. And because of this you can be sure you are receiving the highest quality information and training available to help prevent injuries, illnesses and fatalities in the home & workplace. Find the course that works for you or your business.
COYOTES CHARITIES ANNOUNCES 2010-11 TICKET FUNDRAISING GRANT WINNERS
by BarbyIngle
written by BarbyIngle
COYOTES CHARITIES ANNOUNCES 2010-11 TICKET FUNDRAISING GRANT WINNERS
May 18, 2011 at 1:06pm
COYOTES CHARITIES ANNOUNCES
2010-11 TICKET FUNDRAISING GRANT WINNERS
FOR IMMEDIATE RELEASE:
Wednesday, May 18, 2010
GLENDALE, ARIZONA — Phoenix Coyotes Chief Operating Officer Mike Nealy announced today the winners of the Coyotes Charities’ Ticket Fundraising Grants. Throughout the 2010-11 season, non-profit organizations were presented with an opportunity to sell tickets at a group rate to their volunteers and supporters. Arizona Hockey Clubs and the Power of Pain Foundation were the top sellers in the non-profit and hockey categories and both will receive a grant in the amount of $10,000.
“On behalf of Coyotes Charities, I would like to congratulate Arizona Hockey Clubs and the Power of Pain Foundation on receiving the Coyotes Charities’ Ticket Fundraising Grants for the 2010-11 season,” said Nealy. “The support we received from our non-profit partners was incredible and we would like to thank everyone who participated.”
New Hampshire Step Therapy (Fail First) has been amended, we need your help!
by BarbyIngle
written by BarbyIngle
New Hampshire Step Therapy (Fail First) has been amended, we need your help!
April 26, 2011 at 12:11pm
New Hampshire Step Therapy (Fail First) has been amended, we need your help!.
by Dee Delezene Browers on Tuesday, April 26, 2011 at 11:58am
The NH step therapy bill, which has been amended, is still a step in the right direction for those suffering with pain and dealing with frustrations from access to prescribed medications. The bill, SB171, will now require health benefit plans providing prescription drug benefits to provide an exception process which shall not take more that 24 hours for coverage for a medically necessary drug prescribed for the treatment of pain.
There is a public hearing scheduled for this Thursday, April 28 at 10:30am in the LOB Rm#302. The bill is being heard by the House Commerce and Consumers Affairs Committee. Here is the contact information for the Chairs – any personal phone calls that can be made before Thursday will surely make a difference.
IF YOU CAN HELP US, NO MATTER WHERE YOU ARE FROM, CALL THE NUMBER BELOW, ASK CAROL the Committee Secretary to ask all members of CCAC to SUPPORT SB171!!!
****We need all of you to call (603) – 271-3369 and speak with the committee secretary and ask that a message be passed on to Representative John Hunt – Chairman and Representative Jennifer Coffey – Vice Chair. Pain survivors should leave their name and hometown, reiterate how important it is to support SB171, and ask that they vote in favor ****
THANK YOU!!!
Anti-autonomic nervous system antibodies in CRPS
April 15, 2011 at 9:43am
Article in Press
Pain® printed by IASP
Commentary / PAIN xxx (2011) xxx–xxx
Anti-autonomic nervous system antibodies in CRPS
There is a long history of discovery of autoantibodies in the peripheral nervous system, in disorders such as myasthenia gravis and in certain types of peripheral neuropathies. Autoantibodies are also recognized as pathogenic in disorders of the central nervous system, including encephalitis, neuromyelitis optica, seizures and psychiatric disorders. The mechanisms by which autoantibodies induce disease are especially intriguing, often elucidating the Pathophysiology of a disease, as in the so-called channelopathies, in which autoantibodies are directed against neuronal ion channels [9]. Even antibodies to intracellular antibodies can induce disease, via very specific pathophysiological mechanisms [2]. In many chronic pain disorders, however, the pathophysiology is still incompletely understood. Identifying an autoantibody as the culprit would be not only intellectually satisfying but would also open up entirely new treatment options. This objective has, of course, long been an aim in enigmatic disorders, as for example, fibromyalgia syndrome [3], where anti-muscle protein antibodies were found in about half of the fibromyalgia patients, but in none of the controls. The latter finding is intriguing, but needs to be replicated.
Complex regional pain syndrome (CRPS) is another chronic pain condition the pathophysiology of which is not entirely understood. Insufficient resolution of inflammation and other immunemediated processes have been implicated in the early stages of CRPS [6]. B-lymphocytes have not yet been studied in CRPS but changes in mast cells and monocytes have been reported. Interestingly, Blaes and colleagues detected surface-binding autoantibodies in a subgroup of CRPS patients. These antibodies were directed against antigens of the autonomic nervous system, as shown by reactivity of patient sera with sympathetic and myenteric plexus neurons as well as cholinergic neuroblastoma cells. [5] The origin of the antibodies was unknown, and their specificity was not established. It was also not known whether the antibodies were already present before the trauma.
In the present issue of PAIN, Kohr and colleagues [4] present follow-up data on this project. Here their objective was to identify the autoantigens to the antibodies and to assess the functional activity of the antibodies. They found that some CRPS patients had functionally active autoantibodies against the muscarinic 2 receptor(M2R) and the beta2 adrenergic receptor (b2AR). Intriguingly, their initial investigations did not target the nervous system, but eventually they returned to it. The authors first used neonatal rat cardiomyocytes as well as Chinese hamster ovary (CHO) cells that overexpressed human autonomic nervous receptors, including the human muscarinic 2 receptor (hM2R), and the b1-, or b2-adrenergic receptors (hb1- or hb2AR). The spontaneously beating cardiomyocytes provided the functional assay, namely an effect of the patients’ IgG on beat frequency. Having found a change in beat frequency, the authors next used different receptor antagonists to profile pharmacologically the mechanism of IgG action. The CHO cells provided morphological evidence of receptor binding by the patients’ IgG and using calcium imaging, CHO cells provided additional functional data. With this combination of elegant methods, the authors showed that CRPS IgG had agonistic effects on the b2AR and the M2R. In fact, IgG from most CRPS patients had both specificities.
With all respect to these intriguing findings, before speaking of ‘‘clear evidence of an autoimmune etiology of CRPS‘‘, Witebsky’s criteria for an autoimmune disease [7] should be considered. These criteria include (1) demonstration of a specific antigen, (2) circumstantial evidence of an autoimmune or inflammatory disorder from clinical clues, and (3) reproduction of clinical features in recipient animals by passive transfer of putatively pathogenetic antibodies. Point 3 is still outstanding and should be addressed in future studies.
The authors discuss the somewhat paradoxical presence of localized CRPS symptoms when there is systemic autoantibodies and speculate about altered receptor expression in neurons that innervate damaged tissue. This hypothesis is an interesting one, although it is one that would be difficult to prove in humans. Indeed, Vargas et al. [8] recently demonstrated that degenerating nerve tissue is targeted by preexisting endogenous antibodies [8]. That finding might be another clue as to the selectivity of antibody effects after trauma.
What could be the clinical implication of the finding that a subset of CRPS patients has functionally active agonistic antibodies that recognize the b2AR and the M2R? The b2 adrenergic receptor can mediate relaxation of arteries in certain conditions. The fact that vasodilatation is increased in acute CRPS, may provide a direct link between the in vitro findings and the clinical picture. M2 muscarinic receptor agonists, in contrast, have been shown to desensitize nociceptors and to reduce neurogenic inflammation [1].
Theoretically, the agonistic M2R antibodies found in the CRPS patients should thus be protective and should counteract the pathological process in CRPS. Of course, the effect of M2R antibodies may be different in in vitro and in vivo settings. For this reason, any conclusions drawn must be considered tentative. In particular, before treatment is directed at the autoantibodies, more information as to their function, i.e. whether they are pathogenic or potentially protective,, should be collected.
0304-3959/$36.00 [1] 2011 Published by Elsevier B.V. on behalf of International Association for the Study of Pain. doi:10.1016/j.pain.2011.07.008
Conflict of interest statement – The author has no conflict of interest regarding this commentary.
References
[1] Bernardini N, Roza C, Sauer SK, Gomeza J, Wess J, Reeh PW. Muscarinic M2 receptors on peripheral nerve endings: a molecular target of antinociception. J Neurosci 2002;22:RC229.
[2] Geis C, Weishaupt A, Hallermann S, Grunewald B, Wessig C, Wultsch T, Reif A, Byts N, Beck M, Jablonka S, Boettger MK, Uceyler N, Fouquet W, Gerlach M, Meinck HM, Siren AL, Sigrist SJ, Toyka KV, Heckmann M, Sommer C. Stiff person syndrome-associated autoantibodies to amphiphysin mediate reduced GABAergic inhibition. Brain 2010;133:3166–80.
[3] Jacobsen S, Hoyer-Madsen M, Danneskiold-Samsoe B, Wiik A. Screening for autoantibodies in patients with primary fibromyalgia syndrome and a matched control group. APMIS 1990;98:655–8.
[4] Kohr D, Singh P, Tschernatsch M, Kaps M, Pouokam E, Diener M, Kummer W, Birklein F, Vincent A, Geobel A, Wallukat G, Blaes F. Autoimmunity against the b 2 adrenergic receptor and muscarinic-2 receptor in complex regional pain syndrome. Pain 2011, doi:10.1016/j.pain.2011.06.012.
[5] Kohr D, Tschernatsch M, Schmitz K, Singh P, Kaps M, Schafer KH, Diener M, Mathies J, Matz O, Kummer W, Maihofner C, Fritz T, Birklein F, Blaes F. Autoantibodies in complex regional pain syndrome bind to a differentiationdependent neuronal surface autoantigen. Pain 2009;143:246–51.
[6] Marinus J, Moseley GL, Birklein F, Baron R, Maihofner C, Kingery WS, van Hilten JJ. Clinical features and pathophysiology of complex regional pain syndrome. Lancet Neurol 2011;10:637–48.
[7] Rose NR, Bona C. Defining criteria for autoimmune diseases (Witebsky’s postulates revisited). Immunol Today 1993;14:426–30.
[8] Vargas ME, Watanabe J, Singh SJ, Robinson WH, Barres BA. Endogenous antibodies promote rapid myelin clearance and effective axon regeneration after nerve injury. Proc Natl Acad Sci USA 2010;107:11993–8.
[9] Vincent A. Autoimmune channelopathies: well-established and emerging immunotherapy-responsive diseases of the peripheral and central nervous systems. J Clin Immunol 2010;30:S97–S102. Claudia Sommer Neurologische Klinik der Universität, Josef-Schneider-Str 11, D-97080 Würzburg, Germany E-mail address: sommer@uni-wuerzburg.de
One of my former cheerleaders is a hero in my eyes. God Bless Kazu Yamaguchi!
by BarbyIngle
written by BarbyIngle
One of my former cheerleaders is a hero in my eyes. God Bless Kazu Yamaguchi!
February 22, 2011 at 10:56am
One of my former cheerleaders is a hero in my eyes. I read this story and it brought tears to my eyes. After I was in my accident and lost everything (job, marriage, health, company, house…) Kazu was one of the ony friends who steped up to help and support me. I was his coach, but he taught me a lot about human connection!
This is a stroy that was in the news after his heroic donation of a Kidney to a friend…
“View the World with an Open Heart”
On March 25th at 6AM Kazu Yamiguchi sat across from his friend in the waiting room of the UW Surgery Center. A journey that had lasted a year was coming to an end. Little did either of them realize is that while one man waited for his life to begin the other would be on the brink of losing his. It’s an amazing story about compassion, empathy and the incredible ability each of us has to change a life, to save a life-to open our hearts.
Kazu is a member here at The Valley. If you haven’t met him, you need to. I was introduced to him by John Robertson. John called me at home and said “Anne, you need to talk to this guy, you need to hear his story.” I was given a brief introduction to his story-he donated a kidney to a friend, stood by his friend while everyone else had abandoned him, and almost died giving his friend the gift of life. I wish I could give Kazu’s story the time, attention to detail and poetic justice it deserves but here’s an abridged version. If we can all read this and walk away with a basic understanding of Kazu’s motivation, I feel we’ll all be better off.
This story really began long before March 25th. Kazu and his friend met over at WSU working at the Rec Center. Their friendship evolved from co-workers, to workout partners, and after college weddings and BBQ’s. When his friend’s Lupus attacked his kidney, putting him in kidney failure, Kazu began to visit him at the Dialysis Center. For three and a half years, the two friends meet at the dialysis center. Childhood friends came to visit, family was around, but Kazu was the only one that offered to get tested for organ donation. Luckily for his friend, both men are B+ blood. When I asked Kazu why he donated, when family, friends and spouses chose not to he explained it like this: We all have excuses most people looked at the individual consequence to themselves, but, if you really open up your heart you will realize that no excuse can trump saving a person’s life.
The process to become an organ donor is not an easy one, and just getting the paperwork started took more than a month, and finally a face-to-face visit at the UW campus. While getting the paperwork is a slow process, the testing is a physically exhausting one. The testing to become a donor includes a physical, notification from doctors, and medical tests. Kazu jumped through numerous hoops, really pushing the paper and the timetable as his friend became weaker and weaker on dialysis. The longer a recipient is on dialysis the weaker their body becomes, making them less of an ideal candidate for donation. As dialysis patients around him passed away his friend’s hope faded with each passing day.
But for as much as Kazu wanted to donate, he knew he had three medical reasons not too: high blood pressure, his family background and medical history, and vascular purpura (he was hospitalized for a month when he was four). His high blood pressure came back to haunt him. Knowing that he was an incredibly fit person and wanting to help his friend out, he met with the transplant doctor and begged for a retest. He had to have his blood pressure taken four more times. At every blood pressure retest he withheld food, sleep and water for 24 hours and donated blood the morning of the appointment in order to get his BP down. At the final BP restest the nurse took 15 vials of blood (normally they took 4) and Kazu fainted. Finally, Kazu being a man of faith prayed and prayed that he would be a match for his friend. He passed the final antigen test and was approved to be a donor.
On March 21st he had his final chance to back out of the process. His final tests were taken, he was on his way to giving his friend the gift of health, the gift of life.
As Kazu waited in the cold, sterile prep room the reality of his endeavor finally became clear. He was going to have an organ removed. Only then did he ever become scared. Before the operation remembers the nurse telling him “don’t worry, everything will be ok” Both men went under but when Kazu woke up he knew that something had gone terribly wrong.
It was a worst case scenario. As it was Kazu went into renal failure and had to go back into surgery. Before the second surgery the doctors did a CAT scan and found a 5 inch blood clot. During surgery Kazu lost 2/3rds of his blood and his organs began to shut down. After the second surgery he was in constant pain due to internal bruising, two large incisions and a cracked ribcage. He would wake up in the middle of the night with extreme pain, but could not communicate verbally. Kazu spend the next few days in a heavy hydro morphine daze. He had no energy to eat, or to walk, and spent his days in bed. But by the third day he had a dream a dream that spiritually lifted and pushed him out of the hospital bed to try walking. Everyone was amazed. His friend, the recipient is meanwhile making a fabulous recovery. His Lupus symptoms are in remission, he has a new lease on life. Six days later Kazu was finally discharged from the hospital.
I asked Kazu, after all of it – the testing, the inconveniences, the waiting, the surgery and recovery- if he would do it again. His answer, yes. “It was very nice to see him smile for the first time in 3.5 years. Everyone has a heart of compassion, but whether to open your heart or close your heart is one’s choice. I am not special by donating my kidney to my friend. There are so many people in need all around us. In many cases, we close our heart, and it is easier to choose not to see them. I was very fortunate to be in very lucky situation with wonderful opportunity to save my friends life. Everyone has opportunities to do very nice things to others. That could be another gift of life, or maybe gift of financial blessing, or maybe time to listen and care.
I just want everyone who reads this story to be encouraged to do nice things to others.”
Updates from Dec. 21 to March 3rd
March 19, 2010 at 10:51am
I did not update everyone so well the last few months on my FB so here is some of my blog entries to fill you in in how great I am doing. So far I have completed my 7 day infusion and 3 boosters. My next one is in May!
Dec. 21, 09 update
I’m doing well still. On Thursday, last week, Ken and I went with my little brother and his wife and my new nephew to a holiday party thrown by his P.T. A lot of the staff there had read my book and really wanted to meet me in person. And with the Ketamine working so well, I was excited to show off. I was shaking hands and proud as can be at my progress. The doctors there were very interested to hear about the process and most had never heard of Ketamine procedures, so I hope I excited them enough to go and research how easy it is to administer and how much it can help their patients. We need more doc’s doing this Ketamine procedure. Whilst out, we started noticing that with little to no pain my vision was not doubled, I was walking more up right as well as the no sweating, blanching, or vomiting. I started to get tired/worn out and so did my nephew so we headed back to my sisters. It was so exciting for me to get out and actually enjoy the experience and meeting people and it was exciting for my family to see me doing so. They say I have a new glow and look of happiness that they have not seen for years. I am feeling very well, just tire easily.
I traveled for 8 hours to my dad’s house (which is normally 2 hour drive) last Friday night. The ride was so long, and because of the snowstorm that hit the east coast, by the time we got to my dad’s house the pain was an 8-10 level. The burning pain was back. The roads were slow going and there were accidents all over. The stress level was high and on top of that, the car I was in was very bouncy and every “ice rock” we hit reverberated through me. My seatbelt was going over my port (in the left chest) and as the car bounced around the seatbelt would lock up causing me more pain. I tried to sleep during the ride but only was able to stay down for about an hour, the pain was so intense. I was nauseous from the pain and ready to cry as I thought the pain would never subside again. But Saturday afternoon it began to get better. I got to see my older bro and his family (wife and my 2 nephews) as we had Christmas dinner Sat evening. I did not try hugging them until the end. But it went great and we did soft hugs at the end. I have only done air hugs up to now since the RSD went full body, so it was one of my goals to hug my family members if the Ketamine worked. I rested Sunday and we watched a couple of movies and the finally of survivor and my pain levels continued to go down. It is now Monday morning and I am feeling pretty good. Pain level is about a 2 in some areas, but most of me is a 0. We are going to head back to my sisters in a couple of hours. I pray that it is only a 2-hour drive and that the interstate is clear the whole way.
My first Ketamine Booster is Dec. 28-29th. Yes, two days, I found that out last week. The boosters are 4 hours for two days. I will do this set in Pa, at Dr. Schwartzman’s office and then hope to have my AZ pain doctor (Dr. Siwek) take over administration of them. I will have one two weeks after (so, mid January) and then one month after that (mid march) and then after three months (June). At which point I will be reassessed. As long as I stay in remission, I will not need to do it again. However any trauma can take me backwards and after the car ride to my dad’s I see how little the trauma has to be. Dr. S explained to me that my nerves are still “bad nerves” that he got to behave but they still want to be bad so I have to be careful not to give them a reason. If at any point after the June procedure, I can start the process over, if I come out of remission and if I have the funding to do so. ~ Barby
Jan 5, 2010
New Years Update
OK, I am back in AZ and doing well. I got my boosters Dec. 28th and 29th, 09 and I can’t remember much about it. So, I arrive at Dr. S’s infusion suite and sign in. That morning I could not remember if they said to take 1 or 2 Ativan, so I took 2. I remember the nurse called us all back and told us our assigned chairs and then led us each into a room where our access lines (ports or IV) were inserted. That is the last thing I remember until Dec. 31, 2009. Ken says I told him I was out of my body and that I felt like a bunch of blocks. He adds when trying to walk, I looked like I thought I was a bunch of blocks, that had to look funny. He said I was doing well until he got me to the hotel room and as he opened the door, I said I am going to throw up and went toward the trashcan. Well, I missed and he had to clean up. 🙁 The next day he told the nurse what had happened and they gave me extra nausea medication so it did not happen again. After the infusion on the second day, Ken drove me back to VA.
We spent the next two days at my sisters and then New Year’s Eve w/ my brother, his wife and their new son. We headed back to sisters at 2am and took a short nap, leaving for the airport at 4am. The flight home was a little bumpy in some places, but it was straight through (5 hours) to AZ. We had no radio or movie on board, but we both took the opportunity to sleep. Over the weekend, we went through our mail and were happy to see that we received more donations while in PA/VA. We also got a bill from Drexel Hospital for 104,599. Are you kidding me? I spoke w/ them today and we are working on getting some of it taken care of, which will be nice seeing that I had to take out a medical loan for most of the $18k I prepaid. It can take up to 45 days to get it all sorted out.
I am sure that we will be ok! My pain levels have stayed at 85-100% pain free. The burning pain is practically gone. It has tried to sneak in there a bit, but then I go rest and wake up doing better. I guess that is what the boosters do. They remind, my nervous system to be “good”. As well as Dr. S’s instructions to do, no physical therapy and the papers sent home w/ me to avoid injuries!
We met other patients and their caregivers in PA at the booster treatments. It was great to exchange info and make some new friends who are going through the same thing. We have already heard from a few of them since arriving back home.
I am waiting to hear from my AZ pain doctor about doing my next set of boosters here in AZ instead of flying back to PA. But I do have dates set in PA if needed that I will use in Mid-Jan. So, I may be making another trip out there real soon. One good thing/bad thing is on my trip out to PA the airline messed up my scooter battery and it will cost $250+ to fix it. In place of the battery repair costs, they gave me a free roundtrip ticket, so I can fly free on this next trip if needed. And, I am not using my scooter anymore so I have time to get it fixed, when we have the money.
Last night, I decided to walk to the mailbox. It is quite far from our house. By the time I got there and put the key in the box, I was already tired, then I realized that… I had the wrong key. So had to walk all the way back! Then Ken and I drove to the box w/ the correct key as I was hurting too bad to try again so soon. Oh Well, I am learning my new limits. ’till next time- My Mission is continued Remission! ~ Barby
Jan. 16, 10
I got word earlier that Dr. Siwek’s office (The Pain Center of Arizona), in Phx, was able to get the Ketamine. He will be doing my next set of K-boosters in Phx as a trial & if everything goes right… maybe somewhere down the line, he will take other patients needing boosters. I am very excited. Thank you to Dr. Siwek and his staff (especially Michael)
I also got a special message from a FB friend: Shirley Stratton who said, “Received your book yesterday(rather all 3 of them ~~1 to my pain doc !)…half done…impressed. Very well done, especially for those that are newly diagnosed or even the very young. You relate to others very well Barby. I sense you have more than one calling/mission yearning for you. Saying prayers for you always, especially this coming week!”
This made me so happy that I am able to touch others who are going through the same things I am. I am glad to be in inspirational and a glimmer of hope for them. ~ Barby
January 30, 2010
Hey All, I am doing good. Thank God. I got word this past week that my 3rd set (of 4) boosters will be on Feb. 18 & 19th. I also went to see my pcp doctor (Hummel) last Tuesday He was so shocked at how I was doing. I don’t think he thought it was going to work. But he was very happy for me! I did have major blanching that day. Don’t know why and I had a slight fever… but the highest pain I have had since coming back to AZ is a level 4. Nothing to complain about. I have not thrown up from pain since before the inpatient procedure in Dec.
I also got a call last week from a special projects producer who is going to be doing a segment on me and my pain doctor and how it worked for me and he being the first to do this in AZ.
I have slowed down a bit on trying new activities. I have to pace myself and don’t want to get injured and come out of remission any time soon (how about never). I am getting used to my port, although it does hurt. And the weather changes still really affect me and its set to rain two days this coming week. 🙁 On Feb. 4th, I will be speaking to a Fibro group on dealing with pain, staying positive and how to be your best advocate.
Thank you once again to Dr. Schwartzman and his staff and Dr. Siwek and his staff… ~ Barby
03/01/2010
3rd Booster
I got my 3rd set of boosters on Feb. 18 & 19th at The Pain Center of Arizona. I got my access line put in on Feb. 17th and the staff at the Scottsdale HC infusion (cancer center) was very helpful. They actually remembered me from the access line removal the month before. But I did not remember a thing from then as I had just finished the infusion w/ Dr. Siwek. Everything went great with the entire process this time! The producer from AZTV Ch3 in Phoenix was there interviewing me and the doctor (Dr. Siwek) at the start of the first day.
Ken told me I did some funny things, I don’t remember any of it, but wanted to share as the stories are funny to me. First, I was petting a horse (in the car on the way home). Ken hit a bump in the road and I said he killed the horse. I also asked him if he saw the little people. Where, here in the grass… (Again, pointing to a “spot of grass” in the car. When we got home. He pulled into the garage… before he turned off the car, he says, “OK, are you ready to go home”, I said yes. He turned off the car… my response, “boy was that fast”.
Friday night he took me to a neighbor’s house to watch a movie. Well I slept through the whole thing. But at one point, the dogs started fighting. I sat up and yelled at them, and then fell right back to sleep. Now my neighbors have a funny story about me too.
Once I find out when the TV interview will air, I will be sure to post it. Also, I am recording an interview this Tuesday (March 2nd) to air on 3 CBS radio stations in Phoenix. I am excited to be getting so much exposure. ~ Barby
Hey everyone, it works!!!
December 15, 2009 at 7:55am
Hey everyone, it works!!
I am finally home. Actually, I got home on Sunday night. My burning pain is gone, I am having some other pain feels like the deep bone pain, but it is not constant and occurs more when I am overworking. I slept most of the time I was there; they wake you up to eat and try to have you conscious when the doctors come to visit throughout the day so they can do Neuro evaluations to see your progress. Each patient no matter your size, weight, or whatever is triturated up to the maximum dose and then held there for 5 days, so the process takes longer than 5 days. The first day they take you up to max dose over many hours, once there your 5 days starts. After the five solid days, you come back down over many hours and then have to be observed for many hours, before being released. But my results were great from the start (at least that is what I remember), Dr. Schwartzman was very excited to see the blanching gone, yes, gone, my skin is white… I need a tan. No sweating, No swelling and best of all, no burning. I did have a catheter in all week, except the first and last day. And now having some trouble with urinating and taking some meds for that. I got a call to set up my first set of boosters on Dec. 28th and 29th. It is a 2-day process, which I found out today. So, typically, my boosters will be 2 weeks after, then again in 2 and then again 4 weeks and finally 3 months and then depending on how I am doing we will do them as needed. Dr. S said NO PT, still. He put it like this, they are bad nerves still, he has gotten them to be good, but they are looking for any reason to be bad again. So, I have still be very careful still. That is one of the reasons why it is remission instead of a Cure. I am still very weak, and my legs are like Jell-O, but I am so glad to go through this then burning pain 24/7. I still need to raise some $$$. I got a medical loan since I was quite insufficient on raising funding and most of what I thought I secured, did not come through. I will have keep doing fundraisers for a while, but again, totally worth it. I will write more later! But, it is worth it and I suggest it be tried by all RSD’ers.
Update: Nov. 30
November 30, 2009 at 8:19am
I am thankful for everyone’s support and continued prayers, and ask that you please continue!
I am still in need of some funding to make this Ketamine Procedure happen. I was able to borrow $10k through a Medical Loan and I still have some promises I am waiting on and have raised almost 4k on my own. So, I still need almost $5k as I don’t know if the promises will come through. There are so many things I want to do after this Ketamine Procedure. I cant wait to start weight bearing physical therapy. My first goal is to walk to the mailbox and back, without help or needing to take a break. My hope is after the Ketamine procedure, I will be able to continue my fundraising and cover this life changing procedure and the follow up booster treatments.
As far as a date to start the Ketamine Procedure, I am told it will probably be Jan 4th, allowing me to work on getting the rest of the funding together, as it is a prepay procedure. I am almost there, please help me out any way you can. ($5, $10, $25, $100, it all adds up and it all becomes significant) I will be heading out East this Friday for the chance to start on Dec. 7th, in the chance I raise or borrow the funds needed in time and another patient cancels. Ken has taken on a second job and will be working weekends and some evenings to help with the financial aspects of this procedure.
My port scars are healing and it is becoming less sensitive. My neck scar is almost undetectable, the one on my chest is healing slower, but getting better. It is quite a weird feeling to have this under my skin and ontop of my rib. The port sticks up off of me so it is not too discrete, but the benefits are going to be great and I look forward to the ease of it as I go through this process.
Make a tax deductible donation by check to Drexel Neurological and send it to 38556 N. Dave Street, San Tan Valley, AZ 85140, in note section put “Barby Ingle’s Medical Fund”
Or donations may also be made at any Wells Fargo Bank across the country. Just tell them you want to make a donation to the “Barby Ingle’s Medical Fund”, The account number is: 227-327-6200.
Be sure to check back for update and a full account of the Ketamine Procedure.