The following posts are Barby Ingle’s story with undergoing IV-Ketamine Infusions. from Feb 2009 – Jan 2011. She is still doing well and undergoing booster therapy every 3-4 months.
February 2009
The anticipation of this journey is coming to a head. One of the leading RSD specialists in the United States is Dr. Robert Schwartzman. I have heard others say that their wait was up to five years to get in to see him. I have been on Dr. Schwartzman’s waiting list for IV-Ketamine infusions since 2007. Here I am, two years later, leaving in a few days for my appointment in Pennsylvania. This procedure can be life changing. I have so many friends that the infusion therapy helped, so my hopes are high and my belief is soaring.
Since 2002, when my auto accident occurred, all I want is to get better and get my life back. All that has happened up to this point is that I have become weaker physically, and my entire body is now affected, including my heart, intestines, immune system and more. The neurological condition, Reflex Sympathetic Dystrophy, is a stress producer on your body as well as your mind. It affects all aspects of life just as all chronic illnesses do. The strain of financial stress, marital pressure, family expectations and loss of social life can be devastating if you do not keep your life challenges in perspective.
March 2009
I was suppose be in Pennsylvania in February to see Dr. Schwartzman, but my appointment was moved to March 30, 2009. I fly out later this month and will be out on the east coast for about a month. I am saddened by the delay but know that there is good reason. Others still have years to wait, so I cannot complain.
Coincidently, at the time my appointment was moved back a month, Dr. Schwartzman was on national news because of complications that occurred with one of his patients in Germany who was undergoing the IV-Ketamine coma treatment. From news reports, I found the problem was not with the IV-Ketamine, but rather the female patient had the MRSA infection, and she had it even before leaving the United States. The virus caused complications and additional bills that her family was not expecting to incur. I still feel fully confident in the process and am moving ahead. I understand that people are upset with the process and don’t understand why it costs so much, or why many doctors are not choosing to perform this treatment that the FDA approved and proven to be effective in many Neuropathy pain patients.
I know not all patients respond to Ketamine treatments, but this is a noninvasive procedure that has three levels of treatment depending on what state you are in with all of the neurological symptoms and burning pain.
May 2009
I flew to Pennsylvania for my Monday testing appointments this past Saturday. I was also notified that I was chosen for American Idol finale tickets on Friday afternoon, as I was getting ready to go fly out to Pennsylvania. The American Idol finale is this coming Wednesday. Last year I was unable to attend due to a visit with my lawyers and I really wanted to find a way to attend this year. It is looking like I will not be able to attend.
Sunday, I rested in Philadelphia at the hotel with my husband to recover from the traveling. Monday morning I reported to Dr. Schwartzman’s office and met with two neuropsychology doctors. During the first hour and a half, I was asked questions about my medical history, how I feel about my situation and then some cognitive testing. It all went great. Then, I spent time with the neuropsychiatrist discussing the results and the upcoming Ketamine procedure. Ken was able to come in for this part. I then went in the waiting room for another hour and a half. I completed a personality test that was multiple-choice. By this time, 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.
Ken ran and got us lunch from the Quizno’s across the street from the hospital and doctor’s office as soon as we were done with the testing. There were about 300 questions we had to get through. The neuropsychiatrist went over my answers while Ken was gone. He came out to the lobby and let me know that I was cleared for Ketamine on the psychological part and that I was in normal range for what I was going 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 painful these tests would be, but it went fine. First test was a hot/cold test. This test was performed on both of my hands and feet. The device was about 2x1x1 black box, probably made out of metal. It is put on two places on each extremity. The test was neat to complete. The doctor 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 doctor said it was actually more accurate and told them more information than the biopsy would have.
Then, we did a laser picture, it is like a thermogram, but it is more accurate from what I understood. This laser machine drew out line by line a picture of my thermal image. It was so apparent where the Reflex Sympathetic Dystrophy was from this image.
After that, we did a temperature test. He used this handheld thermometer and touched each finger and other parts of my palms and feet to take measurements. They were close in measurements, but with bodywide Reflex Sympathetic Dystrophy that is reasonably expected. I remember when it was just in my arm and it was two to five degrees colder than the other arm at all times.
Next was a vibration test. I thought it was going to hurt. All it enitialed 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 would tell him and he cut it off.
The final test was a coordination test. You can try it. Take a keyboard and put your thumb below the space bar and your index finger on the key. You might have to have someone hold the keyboard for you. Have someone time sixty seconds while you hit the bar as many times as you can. On my left hand, I got just over seventy and my right was around thirty. He said that the average for a healthly person is 150-170. I thought I was doing well until 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 sensory testing 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 for the remainder of the day and prepared to fly home at 4 A.M. EST (1 A.M. our time) to Arizona.
May 2009
This afternoon I will have my echogram done at the Arizona Heart Institute. Please say prayers that the results come back as normal. I am hoping to be squeezed in for an appointment to have my table tilt test on Tuesday afternoon at a hospital in Phoenix. I also get to see my primary care doctor on Tuesday morning for a checkup.
After this round of exams, I will be ready for the Ketamine procedure. I will let you all know how Monday and Tuesday go. Once again, thanks for the love, support and prayers. Everything you are doing helps!
June 4, 2009
Yesterday was a miserable day. I tried taking Toradol, a non-narcotic pain medication, but within an hour I was vomiting and that continued into the night. I had a spike in my fever, which got up to 102.6 and, of course, had major pain. I did not get in for the table tilt test yet. I am trying again for next Tuesday. Apparently, there are not many places to go for this test. I will let you all know what it was like, hopefully soon.
As far as the echogram, the test went fine. The tech could not give me any results but she did not seem worried about anything she saw. I did not think that this test would hurt as bad as it did. She said the bone is so thick and to see the heart she had to press firm.
Well, when she was pressing between my ribs, it felt like she was trying to separate them! The exam lasted about 15 minutes and she did the pictures in color (showing blood flow), as well in black and white. I could see all four chambers of my heart on the screen. There were also three electrodes attached to me so they could monitor my heart rate, so I could hear my heart beating and it sounded normal to me. I am so ready for all of this to be done.
June 15, 2009
I received my results from my echogram today and they came back normal. I am still waiting for an opening at the hospital for the table tilt exam and hope to hear something by Wednesday. Then, I will be ready for the procedure and all I have to do is raise the remaining funds needed and wait. Yesterday, Ken and I met with a woman from the community who runs a foundation. Their mission is to support people from Arizona in times of need with their medical expenses. Wherever there is need or injustice, they can offer resources regardless of economic status or affiliation. They have offered to assist me in raising the rest of the personal medical funds I need for my Ketamine procedure.
June 25, 2009
I finally got my time and date scheduled for my table tilt exam (cardiac test). It is next Wednesday. I am very excited because this is my last test before Ketamine. *\o/*
July 18, 2009
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 low – 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. They strap you to a table with three straps and then tilt the table up to a 70-degree angle. I was in that position for 40 minutes and I was in sheer pain the whole time. I got a little dizzy and nauseous, but stuck it out so that I could be cleared. My left arm had a blood pressure cuff, IV line and oxygen monitor. My blood pressure was so low that the machine only picked it up every two or three times it tried. Every time the blood pressure check was taken, the IV line would be cut off and blood would come back out the IV tube. By the time that the blood was back in and saline was flowing it was time for another blood pressure check. I do not think I got any IV fluid. Once the test is over, they bring the bed back down so it is parallel with the floor. For me, though, it felt like I was upside down. The feeling lasted about twenty minutes. The cardiac doctor did the repeat EKG, which came back abnormal as I said above. I will see the cardiac doctor in the next few weeks to discuss the exact problem with my heart and what we can do about it, if anything.
Reflex Sympathetic Dystrophy 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.
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. A nuclear stress test measures blood flow to your heart muscle at rest and during stress. During the test, a radioactive substance is injected into your bloodstream. This substance mixes with your blood and travels to your heart. A special scanner, which detects the radioactive material in your heart, creates images of your heart muscle. 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 some very rough days. Some days I only get through by prayers and hope. Just knowing that there can be an end to this is keeping me going.
October 21, 2009
Big news! I got the call today from Dr. Schwartzman’s office. It is my turn to go for the Ketamine procedure. This will be the five to ten day inpatient version in Philadelphia, Pennsylvania performed at Drexel University Hospital. I will be in the intensive care unit for that entire time and will be secluded from visitors and outside influences such as my cell phone, internet, and texting. I think it will be harder on my family and friends than it will be on me. The bad news: I still need a significant amount of money to accomplish this. I am working hard to get this done, but I have a feeling of calmness and believe in my heart that it will all come together for me. I surprisingly do not have any anxiety about it at all, the procedure or the money.
I will get a call from Dr. Schwartzman’s nurse in a few days to go over last minute procedures.
November 10, 2009
Tomorrow I am having a Portacatheter put in. This way during the infusion and the following boosters, I will not have to have an IV line or PICC line replaced every few days or months. The Portacatheter can stay in for a long period and is often used by cancer patients who are undergoing chemotherapy treatment. Getting an infusion therapy is the same process whether it is a chemo drug, IVIG, Lidocaine, Metamine or, Ketamine. It will take about seven days to heal from this procedure and then the plan is to send me off to Dr. Schwartzman to begin the Ketamine procedure. I will try to get some video of the procedure or at least some photos of the process.
November 11, 2009
Before they could take me into surgery, they had to draw blood. I thought that was funny, since I was there to get a Portacatheter because they could not get a regular blood draw. The nurse wanted to try, so I let her. After one try, she called over the head nurse. She looked and looked. She just knew she was going to be able to do it. Then they called over a doctor. He looked and looked. Finally, he told them to use an ultra sound machine to locate a vein that would work. They found one: deep inside of my elbow. I am glad I got it right before going into surgery, so when I woke up I would be out of it and would not care about the pain.
The surgeon came into my curtained off area and asked me if I had any questions. I said no. I had had a PICC line in the past a few times and this was similar just on the inside. I did have anxiety about the procedure and was afraid to hear anymore. Now I wish I had asked questions. I should have asked questions. I was not prepared for the major surgery that it is. I did not know that the scars were going to be so big. Not that I am worried about how scars look; I have so many others, but I was not mentally prepared for the recovery. It was a scary, painful and uncomfortable time. In my speeches, I teach other patients to be fully informed for any medical issues they are going through, especially a surgery. I am sorry I did not follow my own advice going into this procedure.
November 20, 2009
I got my Portacatheter placed on November 11. It was much more invasive than I thought it would be. I have a scar on my neck and one on my chest. They still are not healed fully. On November 12, I began running a fever and headed back to hospital to make sure everything was okay. After that visit, it shows no infections were indicated on the test they performed.
Nov. 18th was my birthday! I had to go to the hospital and have the port used to take blood. It was a great experience and it did not hurt. Shocking!
As they tried to get blood on the 12th, the nurse did not do it very well and it was very painful. The access line seemed to be stuck! It took my breath away when she finally yanked it out. The nurse on my birthday was great and I did not feel a thing. I am still having trouble sleeping and getting comfortable and used to having this port in me. I can feel it move especially as the swelling goes down! The nurse said the wound will be tightened back up and I will get used to it. I hope that happens soon.
November 27, 2009
There are so many things I want to do after this Ketamine procedure. I cannot 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 that after the Ketamine procedure, I will be able to continue my fundraising to cover this life-changing procedure and the follow up booster treatments.
Where’s Barby?
12/7/2009- It’s GO time!
I say “our day” meaning Barby mostly, but also all the family and friends that have been here for support and I (Ken). We are all excited to hear and witness the progress. I will do my best to keep the updates posted.
After registration, there is no more contact with the patient. A phone number is given to the family to contact the nurses for updates each day. I spoke to a nurse around 10P.M. Barby had not yet reached her goal for medication and we were told that it takes about six hours to do so. Thus, a follow-up will take place in the morning.
12/8/09- Tuesday morning 10 A.M.
I reached Barby’s nurse and was pleasantly informed that everything is going as planned. Barby’s nurse, Colleen, told me that Barby is reporting her pain right now to be a zero out of ten, that she is doing very well, and that she is right where she needs to be at this time.
I had to ask again. Colleen repeated, “Barby’s pain level is a zero. She is not in pain.” I do not know how out of it she is and if she really knows what she is saying at this point. Thank you all for your prayers. Please keep them coming.
12/9/2009- No pain is all gain
Barby had a pain level of zero last night, but this morning it went up while trying to eat a little food. Eating brought on nausea, which brought on the pain, so the nurse gave her some medicine to help both, and she is sleeping just fine now.
She is aware that we have been calling to find out how she is doing. She is aware of who she is and where she is at, just groggy and a little off, kind of like “she is drunk or drugged up” …so the good news is that when she is asked about her pain levels, she is aware of how to respond if she is in pain. So, if she says she is in 0-pain level, we should think that she is telling us how she is really feeling. – Barby’s Sister
12/10/2009- Mobility!!!
Nurse Chris said, “She is reporting her pain to be at a level three but it will ebb and flow throughout the treatment. As she gains mobility there will come new limits that she will need to learn. The real test comes on day seven when she comes off the Ketamine to see if the pain will stay or go.”
On a side note, he told me that Barby was watching So You Think You Can Dance and was educating him on different dance moves. GO BARBY 😉 – Ken
2/11/2009 – Jumping for joy
The nurse said Barby is doing very well and is very comfortable where she is. She still has two days left to receive the Ketamine. The treatment protocol is for five full days with an additional day to titrate up, and another day to titrate down. She should be ready to go home on the 14th. I can’t wait to see her. – Ken
12/12/2009- Great progress
Nurse Colleen said that she is very happy to see Barby’s progress and that Barby is on cloud nine. She also said tomorrow is going to be the big test. Then, they will know how much the treatment helped her. So far, all signs are good and they do not see any complications.
12/13/2009- Get ready to go
Colleen said, “Barby remains pain free and ready to go home.” She will titrate down tomorrow and be released tomorrow evening sometime. Barby has no pain when stretching her right arm anymore. Her skin color is back to normal. Sweating is gone and she is asking us to bring clothes and shoes that were normally uncomfortable and painful to wear for any length of time. Colleen said, “Barby is ready to go home, experience life on a new level and start living.” I will see for myself tomorrow. I can’t wait to pick her up. – Ken
12/14/2009- Picking up Barby
Barby’s sister, her husband and I are driving to Philadelphia to get Barby out of the hospital. When we called the nurse to find out what time we would be there to get her, the nurse asked if we would like to speak with Barby. Oh, how excited we got.
Then Barby got on the phone. She said she did not know what the nurses had been telling us but her pain was not a zero, it was a three. She was very sad and we all got very worried. The rest of the drive we were very confused. Then her sister realized it was the bad weather actually. It was snowing. That could be the cause of the spike in pain, so we focused on that.
When we got there, Barby looked so good. She was so happy and looked great. Well, she looked good for someone who had been lying in a hospital bed for a week. We noticed her window shades were closed. She did not know what the weather was like all week. When we opened the windows, she was also thinking that the weather was the culprit of her rise in pain.
Barby was still out of it. But we didn’t realize how much until later. She had her sister come over so she could tell her a secret. She had saved her Lorna Doone cookies. They are the best in the world she tells us. Her sister said those are not the best. They are only Girl Scout Trefoil cookies and they are crappy. Barby said “Oh” and looked sad for a moment. We brought up another subject and Barby sprung back to life. She forgot the cookies were even spoken about. We videotaped the whole pick up experience to put on YouTube. It was a very great day, happy time and full of joy! As Barby would say, “It is a Shake the Poms moment!” *\o/*
On the way home, we stopped at Outback Steak House to have a celebration dinner. – Ken
12/16/2009- Hey everyone, it works!!!
I am finally home. Actually, I got home on Sunday night but just coming out of my fog or “k-hole” as many people call it. My burning pain is gone, but I am having another ache. It 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 neurological evaluations to see your progress. Each patient, no matter your size, weight, or whatever, is titrated up to the maximum dose and then held there for five days, so the process takes longer than the five days. I did not know that going in to the hospital.
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
I am doing a blogtalk.com radio interview with Trudy Thomas from “Living with Hope” tonight. I am really looking forward to being on the air, sharing my knowledge, and advocating for patients. I cannot wait to share my story, tips and tell everyone about my book, RSD in Me!
Last week we had a few storms come through here in Arizona. In addition, a little over a week ago, I stepped on a bed rail and it punctured the bottom of my foot. All week I was feeling bad and need to do the IV-Ketamine booster soon. I was also having terrible headaches.
I decided to go to the doctor and get a tetanus shot. The doctor got me in on Saturday morning. I heard that this shot really hurts and was preparing. Well, the nurse used a pediatric needle and it felt smaller than a bug bite. I really did not feel it at all. Then they said that it would hurt worse the next day. So, I prepared for the worst. Well, I think that these people telling me to prepare do not know about pain. Yes, it was achy, but that is it. There was no pain compared to Reflex Sympathetic Dystrophy.
Well, I also found out that tetanus has the same neurological symptoms as Reflex Sympathetic Dystrophy; who would have known? It makes me think back and maybe last week I was not doing badly because of the storm, it may have been tetanus. I am feeling like I need to do a Ketamine booster soon; I am going to let my doctor know, so that I can possibly move it up from 20/21 to the 13/14 of May. I hope that will work with Dr. Siwek’s schedule.
May 2, 2010
I have decided to get my next booster set early because of the injury when I stepped on a bedrail a few weeks ago. The puncture in the bottom of my foot hurts, as well as burning, swelling, discoloring, etc. It has been bothering me quite a bit. I did end up getting a tetanus shot last weekend and did start to feel better overall after that, but still think it is a good idea to get it early. It will be two weeks early. I will be doing it here in Arizona with Dr. Siwek again. I will get my access line put into my port on Wednesday and then do the IV-Ketamine boosters Thursday and Friday and get the access line taken out Friday afternoon. I am expecting I won’t remember anything once again until about Sunday. I am hoping all the pain (yes, I have had a little burning, since hurting my foot), neurological symptoms, and headaches will be gone again.
May 20, 2010
I actually got my K-booster May 6-7th, which was sooner than I thought they were going to be able to do. Everything went great. I am now 85-90% pain free. I have to say 85% because storms still get me. Luckily, we have been having great weather, so I am doing very well. I have been focusing on the Power of Pain Foundation’s events coming up. We just had two events in Virginia this past Monday and Tuesday, with over 138 in attendance raising awareness and advocacy for pain patients. I did not attend those, but am excited to hear that they were a success.
At the end of June, we are hosting an opening night showing of Twilight: Eclipse here in Chandler, Arizona as a fundraiser and awareness event for Reflex Sympathetic Dystrophy, chronic pain rights and advocacy in general.
Oct. 21, 2010
I have been very busy lately. I have pushed myself to my limits. It is not good for me and I know it, yet I keep pushing. I am almost ready for another IV-Ketamine booster. So much has happened in September and October. I still have so much more to go between now and the end of the year. Two weeks ago, we participated in the VCU pain conference with Dr. Hamza in Richmond for healthcare professionals. It went very well and there were a lot more doctors there than I thought would be interested in attending. I am happy to say that these attending participants actually came to the classes and asked good questions. They wanted to learn. I have been to other conferences where doctors skip out after they sign in and I have learned that it is difficult to get them to engage sometimes.
Today I am flying out to Virginia to speak at three events. Tomorrow I will be speaking at a conference for Virginia state workers, and then on Saturday, I am speaking at a Tame The Pain event.
The one that I am most excited about is on Monday. I am testifying with Col. Doug Strand, a retired air force veteran who has Reflex Sympathetic Dystrophy and has brought the issue of no disability rating for RSD military soldiers into the spotlight. He is getting some major press and I am so proud of him for leading this charge. I know how hard it is to do this work, especially when you are battling the daily challenges of Reflex Sympathetic Dystrophy. Luckily, for him, he has a very strong supportive wife who is right there by his side who cares just as passionately. We will be speaking to the Department Of Defense- Veterans Affairs Division. Can you believe the military does not have a rating for Reflex Sympathetic Dystrophy? A military doctor was the first to give a medical term to Reflex Sympathetic Dystrophy over one hundred and fifty years ago. Yet, they do not have a corresponding rating. They even have a rating for migraines at 50%. That is only one symptom we deal with as patients. If they were to give a rating for each symptom we endure, it would equal higher than 100%. I know the military doctors diagnose RSD, and even have some good treatment approaches for it. However, it only helps if the military member knows how to navigate the system for healthcare after they are diagnosed. I just think that is awful to do to our men and woman who put their lives on the line for us.
So, imagine this. I have been running myself ragged but this tops the cake. Here I am, it is Saturday morning and I am doing well. Just last night I said I feel like I will need a booster soon, so I am not feeling my best, but I am okay. I will be speaking at the Tame the Pain event in about an hour and a half. People are arriving to the event and I see a person who I met a few years ago at a Power of Pain Foundation event. This is the first time he has seen me since remission and I was excited to say, “hi” and shake his hand and show off at how well I am doing. I stuck my hand out and he crushed my hand. Mind you, I have a tiny hand and he is a big tall man with big hands, but what kind of person does a hand shake like that! It was the worst handshake I have ever experienced. The pain was intense. I grabbed his arm with my other hand and squeezed it, telling him to let me go, that he was hurting me. He laughed about it. I was in severe pain. It was obvious, and he did not even care. The woman standing next to me has Multiple Sclerosis. He did the same thing to her and she said her hand hurt as well. Nobody should shake anyone’s hand like this. No matter whom they are dealing with: a pain patient or a healthy business associate. It is just uncalled for in any situation.
Now I am hurting bad: burning-hurting, Reflex Sympathetic Dystrophy burning. I go sit down in the back of the room. Within 15 minutes my entire arm was freezing cold. Dystonia, blanching, sweating was in overdrive. I was dizzy, nauseous and stressed. I still had to speak soon. One of the guy’s colleagues came over to ask me something, I showed him what the ‘hand shaker’ did to me and he was just shocked. For the symptoms to come back so hardcore and so fast, it was a shock even to me. By the time I was to go up and speak, I was getting the dystonia symptoms back in my hand, arm, foot, and blanching up my right leg. I had trouble remembering my presentation and words. I had to hold on to the podium for fear of falling over in pain or from vertigo. As soon as I was done, I headed off to go rest. It was awful. I rested all day Sunday, but things did not get better.
Oct. 28, 2010
For those of you wondering, I am in need of an IV-Ketamine booster after injuring my hand last Saturday. I am not on top of my game, but I am not dealing with a level ten pain level either, so I am doing better than a lot of other friends I know. I did get the discoloration, sweating, and dystonia and the burning pain is back. I will let you know how I am doing after my next IV-Ketamine booster.
June 14, 2010
This is just a quick update to let everyone know that things are going well for me. Storms still get me, but I am good. This past Saturday we had a storm and I started to vomit from pain. It was a bad night. The storm left and I am doing better.
I found out today that one of my friends is in remission. It is a great day when I get a call that another person is in remission from the burning hell of Reflex Sympathetic Dystrophy. I am glad to be doing well and glad when I hear others are, too. It provides hope to those who are not yet where we are in the healthcare treatment process. I did get my port flushed last week. It was a new nurse, but she did a great job and I did not have any pain from it.
July 15, 2010
We are having many storms roll through the last few days. I am really feeling them and it sucks. I did burn my hand a few weeks ago. Instantly, I had burning in my hand, obviously. Then, it quickly spread to my arm and both legs. I have an IV-Ketamine booster scheduled for July 26th and 27th and, hopefully, it will not be too much time in-between the injury and getting the booster.
Monsoon season is approaching and I am glad to be getting the booster just before. Although, with these storms it feels like it is monsoon season already. This morning I could not get out of bed. Actually, just lying there was painful, too. I was cold, so I wanted to cover up, but then the sheets would hurt so much I tried to stick my legs out. In addition, the part of my back that was very sensitive to touch is back. No giving hugs for a while. I have vomited two times and remain nauseous. My double vision is back, too. It is supposed to be bad weather until Sunday… Yuck! I am looking forward to the booster.
Oct 3, 2010
I am doing well, still. I have been busy lately. I took on a bit too much, thinking I was going to be superwoman. It does not quite work that way. Unless I get hurt, the burning pain is gone 80-90% of the time. Other pains still creep in on me. If I get hurt, it all comes back: the burn, the sympathetic system dysfunctions, everything. I get very fatigued still, but overall, I am doing well. Ketamine has given me a good life and I do enjoy not having the constant burning pain. I wish this success for all RSD’ers!
Nov. 10, 2010
Today I am going to get my access line put in so I can get my IV-K boosters tomorrow and Friday. I am ready and excited. I have needed a booster since October 23, 2010. I am happy to be getting it. I am also just getting over strep, so that was no fun. I am sure that had to do with my immune system being poor due to the pain and poor sleeping habits lately. My husband got it after me and was over it before me, so I do not think it would have been as bad if I was feeling better and experiencing less Reflex Sympathetic Dystrophy symptoms.
I did an interview at www.thepainchannel.tv last week that you might want to check out. They cover a large variety of topics related to pain issues each week. My episode was a great interview on Reflex Sympathetic Dystrophy, about being an advocate for yourself, the importance of keeping hope, communication with your healthcare providers, and using resources in your community to help you through your times of need.
Dec 11, 2010 – All I want for Christmas is a cure!
I have been in remission for a year and a few days now. How exciting. I cannot forget that I had three relapses. Just the smallest insult to the body can make all the difference in the world. I am so thankful for my doctors, friends, family, Ken and God. Without them, I would not be doing so well.
On Monday, I will be getting my last port flush of the year! Only four more years until I get this one replaced. I am not looking forward to that. They will put the next one in my right chest and alternate every five years until I do not need one anymore. Maybe in the next four years they will have a cure and we will not be doing IV-Ketamine.
January 6, 2011
It is a new year. I am still doing well. I have some good days, great days and bad days. Overall, 2010 was a good year with little mishaps. I did a lot of great advocacy work and in-person events. I enjoyed doing it all, but it was a bit much. I filmed two TV interviews on Monday and one aired live. I did not think that one went as well as the one that was pre-taped, but I only have great reviews for the live episode. I feel good about that. The second one airs in late January. Both of these interviews were on ABC’s show Smart Family. I feel like it is a big accomplishment to get on an Alphabet Network channel. I just heard a few minutes ago that my friend who is doing IV-Ketamine for Reflex Sympathetic Dystrophy is responding well and good things are happening so I am excited to hear the great news. I have been saying lots of prayers for him.
