Fun

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.

Barby Update: Oct. 13, 09
October 13, 2009 at 1:00pm
Our last event “Bowling for Barby” went very well. Thank you to everyone who participated. There will be an article on the event in the Mesa Independent and Queen Creek Independent, This week… Arizona.

Also, the radio show aired this past Sunday on KMLE, KOOL and FREE FM- Sunday Sunrise with Vicky.

I will be on 3 on Your Side w/ Carey Pena’ coming up. Will get more details soon.

We are working hard to raise the funding for the Ketamine Procedure coming up and raise awareness of chronic pain issues. This past week I attended the American Academy of Pain Management conference. I learned a lot and enjoyed speaking with the doctors in attendance. I learned the most from Mark Cooper, PhD.

Julia Beall from the Beall Foundation has been working hard to set up my next event. The details are below and the 3rd Rock Band from Scottsdale, AZ will be performing at the Luncheon!!! I am looking forward to it.

Our event is a spaghetti lunch w/entertainment. At Red Mountain Christian Center, 740 N Power Rd, Mesa on Sat, Dec 5, Starts at noon. The Band The 3rd Rock Band from Phoenix, AZ. Check them out at http://www.myspace/3rdrockband

Cost is $10 adults, $5 for kids under 12. We will be having raffle drawings, silent auction items, 50/50 drawing, and a few sponsors will be attending.

I’m tired of not having good news! so I haven’t done an update in a while, but here is some good and bad
August 21, 2009 at 3:40pm
August 18, 2009 – I finally got my heart test results and it turns out I have Cardiac Ischemia. This is when the flow of oxygen-rich blood to the heart muscle is impeded, resulting in inadequate oxygenation of the heart. At the end of this month I am undergoing a nuclear scan stress test. After that I will find out what the cardiologist wants to do.

I also got a call from Dr. Schwartzman’s nurse letting me know I could be called anytime between now and February 2010. I am excited because I am having a lot of rough days. I hope that you will say some prayers for me.

Upcoming Fundraising Event (AZ)
The next fundraising event hosted by the Beall Foundation to help with my medical expenses is a benefit bowling tournament
Date: Saturday, October 3 from noon – 4PM.
Location: Mesa East Bowl, 9260 E Broadway Road, Mesa, AZ (Broadway/ Ellsworth). 480-984-1158
Cost: Adults $20 + shoe rental, Kids (under 12) $15 + shoe rental, for 3 games.
We will be having raffle drawings, silent auction items, 50/50, and a few sponsors will be attending. As always, the raffle tickets will be $1 each and you don’t have to be present to win.
So, if you know someone in Arizona that is a good bowler, is terrible at it, or just wants to support a great cause while having fun- bring them!

I am thankful for everyone’s support and hope that those in the VA & AZ area(s) will be able to make it to one of the upcoming events being planned.

NEW NEWS!!!!
I will be on three radio stations for a 30 min interview. KMLE 108 FM, 94.5 KOOL FM, 101.5 JAMZ FM. It will air on October 11th here in Phoenix, AZ area. Will find out time on Sept. 30…. but I am very excited

Also, I will be doing interview w/ George Mason Univ. paper (Broadside) and Radio show on WGMU, I will let everyone know when they are coming out.

Still waiting to hear from a few other TV stations, radio and newspapers… I am excited, say prayers more press comes through… Awareness is so important!!!!!!

Other upcoming events (VA):
Saturday, September 12, 2009, 7pm
Join the Power of Pain Foundation at the 3rd Annual Comic Pain Relief for a night of laughs.
Featuring: The Hippest Hypnosis Show w/ Tom DeLuca
George Mason University- Center for the Arts- Harris Theater, Fairfax, VA
Price: $20 per Ticket, $10 per Student Ticket
Purchase tickets at tickets.com, (listed under Comic Pain Relief) @ the George Mason Center for Arts box office or by phone- (703) 993-2787, more info at: www.powerofpain.org

July 28, 2009 at 12:55pm
Boy is time flying by. I wanted to give an update on the health issues and fundraising. I have had a rough few weeks but I did get my Table Tilt Exam and a new EKG. The table tilt exam came back in the normal range, however the results of this EKG were the same as the original – abnormal. In spite of that, the Cardiac doctor approved me for the Ketamine Procedure. Now it is a waiting game.

The table tilt exam was different than I expected. The strap you to a table with 3 straps and then tilt the table up to a 70 degree angle. I was in that position for 40 minutes and it was sheer pain the whole time. I got a little dizzy and nauseous, but stuck it out so that I could get cleared. My left arm had a blood pressure cuff, iv line and an oxygen monitor. My blood pressure was so low that the machine only picked it up every 2-3 times it tried. Every time the BP was taken, the iv would get cut off and blood would come back out the iv tube. By the time the blood was put back in and saline was flowing again, it was time for another BP, so I don’t think I got any iv fluid. Once it was over, they bring the bed back down to parallel with the floor. But for me it felt like I was upside down. The feeling lasted about 20 minutes. They then did the EKG which came back abnormal as I said above. I will see the cardiac doctor in the next Thursday to discuss the exact problem with my heart and what we can do about it, if anything. RSD does affect your autonomic system, so to me it would seem that there would be an effect on the heart since it is an automatic organ. I will let you know.

In the meantime, still on no pain meds, trying to keep mind on positive thoughts and look to the future. I can’t wait to drive and do simple things like open a jar or go for a run. I still need lots of prayers! It is monsoon season here in AZ and although I love the hot weather (105 degrees is perfect for me), the storms bring in extra pain for me.

For all of you in the DC/NOVA area the Power of Pain Foundation( I am apart of) is doing the 3rd annual Comic Pain Relief benefit show. It will be at George Mason University Center for Arts on September 12, 09 (Sat.). The comedian is hypnotist- Tom Deluca. He will be choosing 20 willing audience members to hypnotize on stage. The show benefits chronic pain patients with durable medical equipment and other needs as well as awareness events. I hope some of you can make it. More info at www.powerofpain.org and tickets can be purchased at www.tickets.com or 703-993-2787. It will be a great night of laughs and help patients like me. The foundation also needs about 10 more volunteers, if your around to help out. Email info@powerofpain.com for more info if you’re interested in volunteering.

My parents are still working on getting a T.G.I. Friday’s – Benefit Dinner’s set up (Woodbridge & Richmond), for me. I have raised $2,800 and have about $12-15k in promises. If all of them come in then I need about $25k more. I got a call from the doctor’s office they said anywhere between now and March 2010 is when I will be going in for the Ketamine Procedure. They are only taking one at a time right now, and the nurse said they will soon be taking 2 at a time, which will speed things up!!! YEAH!!! We’re still taking donations at Wells Fargo it is under the “Barby Ingle’s Medical Fund” account number 227-327-6200, if any of you are able to make a donation. For anyone in the Phx area. The Beall Foundation is hosting a fund raiser for me wed, July 29 at Streets of NY at 6638 E Superstition Blvd, just off of Superstition Springs Blvd/Power Roads in Mesa. It’s a LIVE auction and dinner starting at 6:00PM. Some of the items that we have received to auction off are: an autographed picture from the Phoenix Coyotes, 2 massages, carpet cleaning, vacation trip, bottles of wine, Hooter’s gift cards, pizzas, & several others items!

Update: Late May 09
May 22, 2009 at 10:10am
May 21, 2009

I flew to PA for my Monday testing appointments this past Saturday. I was also notified that I was chosen for American Idol finale tickets. Last year I was unable to attend due to a visit w/ my lawyers and I really wanted to find a way to attend.

Sunday, I rested in PA at the hotel w/ my husband, to recover from the flight. Monday morning I reported to Dr. S’s office and met with two Neuro-psychology doctors. The first 1.5 hours I was run through my medical history, how I feel about my situation and then some cognitive testing. It all went great. Then I spent time discussing w/ the Doctor the results and the upcoming Ketamine procedure and Ken got to come in for this part. I then went in the waiting room for about 1.5 hours. I completed a personality type test. By this time, I my pain levels were through the roof and I was on the verge of vomiting, so Ken did all the writing for me (he is the greatest). The Neuro-psych doc said that I was cleared and that I was in normal range for what I was going through. Ken ran and got us lunch from the Quizno’s across the street from the hospital/doc’s office, as soon as we were done with the testing (there were like 300 questions we had to get through). As I was finishing my lunch, the next doctor came to get me for Autonomic Sensory Testing (QST-AST).

The room was like a closet, very small. There was so much equipment in there the doctor had trouble moving it in place at times. I was nervous about how much pain these test would be, but it went fine. First test was hot/cold test. It was done on both of my hands and feet. This devise was about 2x1x1 black box, I think made out of metal. It is put on two places on each extremity. The test was cool. The doc heated and cooled the box and it could instantly turn back to room temperature. On my right hand, one of the cold times, I could not hold back from yelling from the pain. I started to tear up. He said, I was very sensitive to touch and cold, which I already knew. This test was used instead of a nerve biopsy, the doc said it was actually more accurate and told them more information that the biopsy would have. Then we did a laser picture, it is like a thermogram, but it is more accurate from what I understood. I asked for copies of the picture and it will be a few weeks ’til I can get it. After that we did a temp test. He used this handheld thermometer and touched each finger and other parts of my palms and feet to take measurements. They were pretty close in measurements, but with Bodywide RSD that is probably to be expected. I remember when it was just in my arm and the arm was 2-5 degrees colder then the other arm. Next was a vibration test. I thought it was going to hurt. All it initialed was a small black box with a sensor the size of a dime sticking up. I put my index finger and then my pinky on the sensor and he would turn it up. As soon as I felt it, I told him and he cut it off. The final test was a coordination test. You can try it. Take a keyboard and put your thumb on the bottom and your index finger on the space bar. Have someone measure 30 secs while you hit the bar. On my left hand I got just over 70 and my right was around 30. He said that the average “norm” is 150-170. I thought I was doing well, ’til he said that. I asked him to show me what normal would look like and he did the test. I was amazed at how quick he was. Then the testing was over. The doctor said he was done early because I went through the test so fast, due to the sensitivity. I went through the test fast, because as soon as you feel it your measurement is done and you move on.

Ken and I then rested and got prepared to fly out at 4 am, east coast (1 am our time), to fly home to AZ on Tuesday. We landed in AZ around 11 am. From there we decided to fight through the pain and head to CA for American Idol. We had 4 tickets and decided to sell the other two. We found a guy who wanted them and he paid just under $900 for them. The finale was great and worth the extra pain. It was a once in a lifetime event and one of the best memories of life I have. We got great seats, you would not believe the “stars” that were right around us and who I met. To name a few: Janice Dickinson, a lot of the past idols, Heather Locklear (sp?), and Billy Bush. They were on the red carpet and then just went into the event w/ the rest of us. People hung out in the lobby until seating began. In the lobby, I was walking past Billy Bush and said, “hey, Billy Bush, nice to meet you”, he was very approachable and friendly. He shook my left hand, as no one shakes my right. I told him I follow him on tweeter and he said, they took his blackberry so he could not tweet from the show. They did not let phones or cameras in, so we left ours in the car. The guy behind us snuck one in and we noticed him on the phone. We asked him to take a picture of us and e-mail it. So, he did. The show began and it was one surprise after another. On the last commercial break, Ken said lets go meet Paula. We were sitting left center and by the time we got out of our row, Paula had gone backstage so there was no chance. I was very scared of the security also, I did not want to look like a stalker, but I wanted to give her an RSD awareness bracelet from our foundation. Since she was not there, I saw Billy Bush sitting about 8 rows down and got brave and approached him again. I asked if he was going to the after party and he said yes. I told him that I would like him to give Paula the bracelet and that we both have RSD, it did not register w/ him at first so I said “pain condition” and he remembered. I told him I sent a copy of my book to Paula a few weeks ago and that I wanted to give her the RSD awareness bracelet. He seemed impressed that I wrote a book. In the meantime, a security guard came up to me and started to grab me to tell me to go sit down. Ken jumped in and said don’t touch her and the guard turned around. Billy went to reach out and touch me too. Ken put his hand out to keep him from touching me and said, don’t touch her, she has a pain condition. I just kept talking, I knew this was my only chance. They announced 30 secs to air and I said, please tell her this is from Barby (like the doll), please tell her. I thanked him and started to turn back to walk to my seat. Then he said, “you’ve got your wish”! I was so excited, even if she does not contact me, I am happy to know that Billy would pass on my message.

I wish we could of stayed longer but Ken had to go to work at 6 am this morning and we had to get to the airport to head home. It was a good thing, because I was in so much pain that my body was having spasms, cramping and just pure pain. The loudness of the show did not help. I am glad we got to do this and will always remember it!

So all in all, the trip was successful. I do have to get one more cardiac test done here in AZ before I can get scheduled for the Ketamine. My test I had here in AZ before I left, came back with an abnormal finding and I have to now have more testing. I see my pain doc in two weeks and my first fundraiser is next Thursday. I am full of hope for the future and happy I got to have a good experience.