The Psyche of a Chronic Pain Sufferer

Part I of Hibernation Period

2011-09-02T15:10:00.000-04:00

Hello everyone!

I know it has been forever since I have written and I feel terrible about that. We all know that there are times in our life where we need a break just to figure out where we are, what we are doing and where we are headed. I have done an enormous amount of thinking and made some important changes in my care that almost killed me and my inner spirit to keep fighting. Some of you are aware of all that has happened and many have not so please keep that in mind as you read my summarized account of the last several months.

Many of you followed this blog in hopes that I would find "a miracle" with ozone therapy, we know that failed terribly and has actually speeded up the progression of my symptoms, in my opinion only! So, I was left feeling responsible for the failure of yet another treatment for RSD and ripping away the hope so many of us counted on; for that I am deeply sorry. It was never my intention to hurt, or give false expectations to anyone and I pray that did not result in anyone giving up this fight!

As you can assume correctly this failure was an impressive blow to my hopes and dreams. I did end up battling a severe depression period. With pain comes depression as we all know, but this took something more, it took away my trust in the medical professional field. I was treated horribly by Dr Robbins, he was verbally abusive, violated my privacy, and was ignorant of all my pain conditions. It was a very difficult time for me because all my efforts to make sure he did not do this to anyone else failed! I filed state and federal complaints only to be misled and told because he did not accept insurance as payment he could not be held in contempt of HIPPA. I learned a lot during this process but it almost destroyed my marriage, my support systems, and my will to live. I can safely say now that all is back on track and I have restarted my climb up this treacherous mountain of surviving (not beating, curing, resolving or eliminating just learning to survive) this pain and suffering.

I decided to break down this summary into several parts because I can no longer sit with a laptop on my legs for any length of time, I know you will all understand and will come back to read part II of this long hibernation period! Thanks again for reading and supporting one of my distraction techniques of blogging. I am making a short term goal of writing at least 2-3x a week in small increments, I pray you will continue with me on this journey. Until then, remember this quote I wrote for a dear friend recently: "God has a plan, and although it may come packaged in a brown paper bag it still may have incredible value within!"

Does anyone get it?

2010-11-02T00:56:00.000-04:00

Will we ever truly admit to ourselves and others we had enough? That under no circumstance can I continue pretending that all is okay. I hurt, not just an ache or a small irritation but unbearable, burning, stabbing, shooting, penetrating pain that never ceases! I want to scream it outloud so often, in church, in a store, on line, at home on the phone, at the drs everywhere! I want the world to know I lie each day that I live. I think the stigma attached that we are either drug seekers, weak, looking for attention, psychologically unbalanced, or maybe faking the intensity actually pushes us further into this disturbed thought process that I can't be honest, society can't handle it and so I would be judged. I am tired of trying to explain so I just don't anymore. I feel like an outcast and most days I just want to be "normal"! We are individuals and our norm is very different from another's norm in life but does it make it wrong? My family pretends to get it, because if they did they would not expect so much from me, they would applaud my small accomplishments each day (wearing sneakers for instance), they would call more, they might take me out to cheer me or send a flower over or a card because afterall if it was Cancer people would be stopping by with casseroles right? So, the question remains does anyone who does not suffer get it, get me, get what I can and can't do, get what would or could assist me or cheer me, do they see the real me??? My theory is that they just can't handle the truth. Yup, a line from a movie "can you handle the truth?". I honestly believe the masses can't and so to make it easier they pretend the suffering doesn't exist. It is too difficult to bear someone they love and care about hurting so much. If they can't fix it they ignore it exists!! I have often been told "I don't know how to help you, I wish I could fix you or make it better but I can't so what am I suppose to do?". Yup ignoring it sure helps.....NOT! Acknowledge that Denise is not the same and she lives in pain and suffers from depression because of it!!!! There it is out there, so does it make you see me different? No, you knew it all along but didn't know what to say right? Please talk to me, ask me questions, aknowledge that yes I am disabled and can't do what I use to, period. Now, how can we make the best of it? We have one life and should not be wasted, no day is a guaranty. Help me live, remind me what I can do, cherish the good days, support my efforts, be there on my bad days, motivate me, give me the opportunity to choose what is best for me on any given day and don't judge me! Please don't laugh when I fail but put out a hand and help me succeed!!!

God Always has a Plan

2010-10-03T20:04:00.000-04:00

October 3, 2010

Where do I begin now? The meaning of this blog has to take on a new path since the last treatment did not work out as planned. I needed time to think and accept all that has happened and I am finally at peace. You see God had a plan, He always does and I lost sight of this. His reminder is a tough one to take!

My fur baby Pepper of 12 years got sick. We honestly believed she had a UTI and not the horrible news we got. Pepper had cancer and was bleeding internally; she had 1-2 days left at most. The decision to euthanize was so difficult for us but also easy, we didn't want her to suffer and we could not handle losing another dog at home. Katie our German shepherd of 8 years died less then a year ago at home from a stroke after spending 1200.00 plus to find out nothing just weeks earlier to her passing. The decision was made for Pepper and we sat on the cold floor at the vets holding our baby as she took her last breath. As I type this I am crying, Pepper my first baby is gone. She knew me, loved me unconditionally, cared for me and just understood me better then any human. I realize if I had not left treatment I would have been 360 miles away and Bill would have had to do this alone. I had a beautiful day with Pepper the day before, we took a 3 mile walk and she was so happy. I thank God for giving me that time with her, I would have been devastated if I couldn't have said goodbye to the best friend I ever had. So God's plan worked out and I listened to my gut that I needed to go home!! I am still grieving my baby girl but a beautiful rescue pup named Mya has helped me to remember the great memories with Pepper and still give my love to another dog that needed me. Sophie, our Sheltie, was also displaying signs of depression. Mya has brought us laughter, love and hope that we can survive this heartache. Sophie has adapted and accepted Mya as her own and Sophie’s happy, playful and loving spirit returned. God is good. He not only gave me time with Pepper He gave us another fur baby that needed a home (a boxer mix). She is a rescue puppy. Mya, her mom and 3 litter mates were found in NC on the side of the road completely abandoned. Mya was 5 weeks old at the time. Mya is now almost 14 weeks and growing so fast. She is full of life, energy and love. I realized life must go on, no matter how much it still hurts I know I have enough love in my heart to give to another dog.

So, now again, I am faced with what is my purpose in this life? What am I meant to accomplish when most days I can't even dress myself without tears? What can this blog evolve into that readers will want to come back to read and comment on? I feel overwhelmed again thinking about all that has happened and how it almost ruined the essence of who I am. I need to rediscover "me" and take a microscope to what I think, feel and do and then maybe the answers to my questions will be easier to answer. I hope you come along for this continuation of discovering the psyche of a chronic pain sufferer!

Please come back soon and leave comments. Any ideas that are different from mine will only add to depth of the blog and allow me to ponder another way to look at things. Thank You!

The Ugly Truth

2010-09-08T16:53:00.000-04:00

September 8th, 2010

So many of you out there were supportive, caring and loving as I started going through this journey to health. I received notes, phone calls and e-mails motivating me each and every day. I knew in my heart I was doing the right thing and I wanted us all to have answers to our pain. Without all of you I could never have packed my stuff and left my hubby, my bunny and my dog Pepper to embark on the unknown. I cried a lot but I always made it through and felt renewed each day because I had so much faith and hope inside to carry me.

It all came to a screaming halt one early evening while chatting with a friend online. She asked if she could call me and I said sure, a bit reserved now because the vibe of the conversation changed. I honestly thought it would be no big deal, boy were my instincts way off kilter. She begins to share with me how difficult this decision was and had to consult with her hubby first. Now, I am terrified…….just tell me! I hear the words but they make no sense because how could someone I trusted withhold information so sensitive and personal that was supposed to be between a doctor and patient only?!?

I became defensive, hurt and very angry. I don’t understand how someone who suffers in pain themselves could be so cruel to another. I am now so distraught I call Bill, he can usually decipher my words through all the sobbing……he has had many years experience fine tuning this ability. He calms me down and asks for Dr. Robins’ number. He explains to me that he will call him and call me right back. Well, my second flash of complete horror takes place because he admits to sending e-mails to Trudy, the host of “Living with RSD” blog talk radio show, about my treatment. I assumed at this point it was general terms. Now, I am fuming but decide to go to the source. I contact Trudy online and she calls me immediately, but her show is starting in a few minutes and can not talk long.

Trudy denies everything. She denies receiving e-mails about my personal information, she denies passing it on to a friend and proceeds to explain that the mutual friend is a liar and angry at her and trying to sabotage her show. I am crying, so very upset and Trudy continues to berate the other person, she does not console me, she is removed, cold and as collected as she is on radio. I am a human being, with emotions, hurting and she is just carrying on about the friend that told me. Sorry, got to go Denise, the show starts in 5 minutes…..ok sorry Trudy. She says, I will call you tomorrow.

Now, I am torn. What the hell is going on and why am I in the middle of it? Trudy almost had me convinced that the other person, whom I knew better then I knew Trudy, was just angry and trying to hurt Trudy in some way. I agreed to go to my treatment the next morning and confront Dr. Robins alone, my husband told me I am stronger then I believe I am and that I can do this.

The next morning approaches too quickly and I head out at 6am for treatment number 9 and some serious questioning of the Dr. I walk in and he is acting different. He is calmer then normal, not rushing to get my needle in and proceeds to ask me what was going on. I said I am not sure but it appears someone wanted to hurt Trudy. Then he hands me e-mails he sent to Trudy and proceeds to apologize for revealing certain information about me and his observations about me during his initial consultation with me. Dr. R tells me Trudy said “you two were best friends and I figured she could offer you support” if I told her what I thought. Since when???? I met Trudy for my interview on her show, we had never even chatted before that. Best friends? What? He apologizes again and says “I didn’t know, she led me to believe you talked each day” etc….When I ask for the initial transmissions he sent to her he claims to have lost them (I bet he did, they were too incriminating) but follows it up with Trudy should have them……..Trudy lied to me about all of it. She claimed just the opposite of what Dr Robins has said and what was stated in the e-mails. I am dumbfounded but don’t lead on and just go home after my treatment.

Did I enter the Twilight Zone or something? I had to; after all why in the world would someone who suffers in pain want to hurt another in pain? My only answer is to get accolades for this treatment, notoriety for her show, and look like a hero to all RSD/chronic pain sufferers. Without an audience her show means nothing. She protected her show over having the back of a friend!!! Now, I have breach of confidentiality by the dr, I have hurt feelings from betrayal, and I have to give up treatment that could have potentially helped me and others because I can not trust the dr or Trudy any longer. What other things did he or she lie to me about? Is ozone really that safe? Dr. R always made it clear that he didn’t want attention brought his way, why???? If this is so great, and non-harming in any way, why not do articles and interviews to spread the word in this nation? Just does not add up does it?

I called Bill later that evening in tears and asked him to come get me as soon as possible. My stress was high, pain was up and I just wanted my life with my husband and my own bed back! After a long, emotional call he decided to take the next night off and drive down (360 miles one way) to get me.

I get a note back from Trudy. I told her I was going home and she wrote and said “I have not caused this drama. All I did was give you a chance at getting well. You said the treatments were working. That should be all that matters; You are going to give up a hope of getting better because of something that had nothing to do with your therapy?"

My Reply: “It does have to do with my therapy my personal info was given out and I can no longer trust the dr plus I only see sleep as an improvement not pain.......dr R admitted what he did but if I don't have trust I shouldn't do it nothing is stopping him from disclosing more in the future I see now you don't deny that you lied to me how sad it is that you can't even admit when you were wrong too. This has nothing to do with *&^%$ leaving your show I asked you personally on the phone in tears and you still lied. Have a great life but lying is unacceptable."

She never responded back ever again. When my husband wrote to ask for the e-mail transmissions she very coldly responded “I don’t have any e-mails from Dr Robins anymore”.

The guilt starts immediately. I am letting down friends, family, and RSDers all over! I feel like a complete failure. I was told by some loving friends that “you have to take care of you first and foremost, if they are friends they will understand.” I sure hope and pray they do because if I lose them I lose everything. I need those that get my pain and suffering, I need the support and encouragement from people who truly understand a day in the life of a chronic pain sufferer and know what my psyche is thinking before I speak the words. I can say “pass me the chainsaw” and they get how much pain I am in, or “shoot me now it is more humane” and they know death is welcome over the pain and I see no relief in sight, it doesn’t really mean I will cut my leg off or kill myself……they are merely expressions of how badly we hurt and need distraction and motivation to get through that moment. If they don’t support me I know I will lose all purpose in life. I love helping others, praying for them, offering an ear, a shoulder, a laugh a cry…..anything to make them see they can get through another day.

I am home, have been for almost a week now and battling intense emotions each and every day. I will admit to questioning my faith, doubting our Lord, and not trusting my own instincts because they have failed me. I was not protected in any of this. I set myself up for hurt, blame, failure, deceit and judgment by others. I stand by my original intention to do it for all my fellow RSD sufferers. That is why I finally decided to disclose what really happened. I don’t want someone else to feel this kind of pain and go through the emotional roller coaster that I am still riding. We all have the ability to make choices and decide for ourselves what is best for us, so I am putting that decision in your hands. I am not shutting down Trudy’s show, I never until now even disclosed the details of what happened. I refuse to be like her. It is your choice, you can continue to support her, listen to her show and forget any of this happened and I will not say another word about it or you can stand up and choose to abort her show knowing she is willfully lying to fellow sufferers to promote herself. Honestly, I am “letting go and letting God”, I have to move forward now. I am not cured, in fact my pain is higher then ever and the stress of it all does not help. I need to take care of me now.

Here is to new beginnings!!! As my pastor reminded me today, “when one door closes a window will open”! Stay tuned for future blogs, believe me when I say this psyche never stops working!

Treatment #3 Aug. 20th, 2010

2010-08-25T17:15:00.000-04:00

Today we have to stop at my brother’s house to pick up his SUV. I will be driving it back and forth to my treatments and wanted a test run while I have Bill with me. I had a horrible accident December 24th, 2009 where we were saved by the grace of God and our guardian angels. Unfortunately, the experience left me with serious PTSD! Every time I even consider driving I have anxiety attacks and believe I am not capable of driving any longer. Now, I am forced to confront my fear in a very populated area with someone else’s car and insurance.

I survived! I confronted my fear, took my time and did just fine. Dr. Robins is pleased with my sleep and explains that he believes that the added nerve pain and headaches are temporary. O3 is a very strong and powerful, it removes metals and toxins from the body and my body is just reacting to that process. We all know (those that have RSD) that RSD does not like change and revolts whenever something new is introduced. I expect this is no different and I will just have to wait and see.

Wow, almost a full vile of ozone today. Dr. Robins also informs me that I get a shot in my arm today and will continue to every 5 days. What? Wait? What is it? He replies, “goat urine”! Huh? Goat urine, what the heck does that do? I rant on and ask a million questions in one long sentence and I look and everyone else is laughing……. Dr. Robins looks at me smirking and says “Denise, I am kidding, it is just a B12 shot”. I immediately commented (so as to not feel stupid) that if they use lizard spit for diabetes and leeches for infections, is it so far fetched that goat urine serves some purpose?

The good things today are that I don’t smell or taste the ozone like I was and the chest pressure, burning and cough have diminished. I do notice I am extremely thirsty, all the time, even though I am drinking a lot of water. Dr. Robins urges anyone doing this to drink at least 1 gallon of purified water/fluids a day……no caffeine, no alcohol, and no soda. I am about ½ way there and the dry mouth is awful, odd considering I am taking less pain medication! I get nauseous from plain water in the AM normally so it has been an adjustment and I am doing much better.

Home now and I feel so tired but not sleepy. Bill and I decide to eat something and take the dogs for a quiet, peaceful walk around the duck pond. It is our last day to spend some time together since he goes home tomorrow morning.

The walk was just what we needed. I can report that the nerve pain that was shooting down my legs from my spine stayed concentrated in the low back and feet. Last week I was in tears during any walk, sleep, sitting and standing. Getting comfortable was almost impossible and I was considering a double lumbar epidural just for some relief.

My pain levels were down 2 whole points (yup, those darn pain scales I hate so much because they are relative to your pain experiences) for a few hours and went right back up to normal levels for me, but we are expecting rain Sunday and for the next 3 days following so the barometric pressure change is probably not helping the situation.

August 19th, 2010 The Miracle of Sleep

2010-08-25T16:20:00.000-04:00

August 19th, 2010

I awaken at 9am, I think that was the time because I drift off again and when I wake again I realize that I slept all night!!! No watching the clock, no counting down the minutes to the next pain pill, no nerve pain hits that jerk my whole body, no waking up from screaming in pain and agony with tears, no ipod games, music or chatting to distract…….nothing, just solid, sound sleep! It is the first time in 4 years that I have slept for 8 hours. I notice I am not stiff from fibro either, Bill says to me “I can’t believe I don’t have to uncurl your fingers!” My body aches and muscles hurt but by 10:30 I am begging Bill to go with me to walk the dogs down Port. Normally at 10:30 I am finally asleep from a restless night and so groggy from pain medications I can’t even answer Bill when he gets in from work. Today, I am up, dressed, refreshed, and not thinking about pain medications at all.

All I can smell and taste today is OZONE! I have a terrible headache and my tummy is off kilter from the added vitamin C I have to take but otherwise alright. Heck, I use to have migraines so bad I couldn’t lift my head for fear of vomiting, and you might as well call me a vampire then too because the light hurt so bad it felt like it was burning a hole in my skull. So, a headache to me is doing better.

Had to give in and take a pain pill for the headache at suppertime…….I hate to but the alternative could send me under the covers and very still. I am sleepy early and head to bed in preparation of Treatment #3 early the next morning.

EEEEEEEEK!!!!!!! I am hit with horrible nerve pain in my foot again and yup, the culprit is a nail……darn that ozone really grows nails fast! I clip it, roll over and don’t wake up until the alarm goes off at 5:00am. 4 ½ hours of sleep, really????? I can not believe that I got another solid nights sleep…….IT IS A MIRACLE!!!

Treatment #2 Aug. 18, 2010

2010-08-23T14:12:00.000-04:00

Okay, I just realized something……4:45am is sooooooo early! It is the only time on Long Island you don’t have to worry about gridlock traffic. Directions are in hand and off we (Bill and I) go on another adventure to find Dr. Robin’s house. We leave plenty early just in case we get lost or hit traffic along the way; we end up getting there 30 minutes early because it was so easy to find! We decided to stop at 7-11 so Bill can get his coffee and I can have purified water, yum! Yup, sarcasm inserted there because I am suppose to drink 1 gallon of purified water a day including other healthy liquids, no caffeine (no issue there it added to my nerve pain anyways and never drank it), no soda and no alcohol! We sit and talk in the car about the past 24 hours.
We are at the house and we follow the brick path (sidebar, my brain went to following the yellow brick road to see The Wizard and make all my dreams come true) past all the veggies in the garden (which smell so good) to the backyard and wait until the door is unlocked. The Dr. claims he is rarely late but expresses to me that I shouldn’t run away if it is 7:01 unless a note is on the door. A gentleman arrives now and we chat for a few. He expresses his concern that it is 7:04, he has to get to work and Dr. Robins is rarely this late unlocking the door. I told him not to worry that he can go first because I have no place to be at 8:00am!!!! I hear the click of the lock and walk in to find Dr. Robins in sweat shorts and a T-shirt and bed hair……yup he rolled out of bed and came downstairs to treat us. The Dr. puts a beautiful old husky in a kennel and turns on this huge flat screen TV to 30s-40s classics and explains that he doesn’t want stress or controversial debates among his patients so these old movies are perfect. Woohoo, I look around and see Yankee memorabilia all over and giggle a bit because a close RSD friend is a Boston Redsox fan and I always pick on her that the Yankees are better!!! :-p

He treats the other guy right there in the den while I watch and wait for my turn. It is my turn and I rotate to the “chair” and get prepped for the needle. He misses the vein but gets it with a small adjustment. I am amazed that he fills the vile 2/3 full on day 2. Dr. Robins looks down and starts berating me for the sandals on my feet. He asks where the great New Balance sneakers were from yesterday. I shyly answer, “Home at Mom’s, it is early, I wasn’t walking far, and Bill drove.” He replies sternly that I should be wearing them 24/7 365, that they are the best thing for my feet. Okay, the Podiatrist is now showing and I choose my words carefully when I decide to educate him on RSD!!! As most of us are well aware, RSD is not a forgiving disease, it does not like change. RSD dictates what I can do, wear and when I can rest or sleep or even walk and sit. It took me 6 months to get a sock on so wearing a sneaker for even 20 minutes is a big deal. I explained the sensitivity to touch and that any shoe is miserable for me so I pick what is most tolerable and least restrictive based on my current pain levels. I have yet to show up again without the sneakers because I can’t let the stress of the uneducated get in the way of me healing.

The ozone is in and I move over to the next seat and rest. The chest pressure/burn is bad and all I can smell and taste is the ozone. Another guy walks in all pumped up and comments “nothing like the smell of ozone first thing in the morning”! First off, “shut-up”, it is too early to be this awake let alone this happy and alert……..I think to myself, will this be me soon? Anyways, Dr. Robins and Bill comment that they can’t smell the ozone, but it honestly has a very distinct smell and now I know I am not the only one who can smell it (I am a super taster/sniffer and I am always being told “I don’t taste/smell that at all”).

We say goodbye and out the door we go, I am so thirsty I feel as if I could drink that gallon of water in one sitting! When we get home I catch Mom up on the visit and off to bed I go and sleep 2 hours, uninterrupted sleep, amazing!!! But, all I can still smell and taste is ozone and it is nauseating me a tad. I also notice a headache brewing and decide I will ask about it on Friday.

I am exhausted by the time I start taking night meds and before I know it I am drifting off, only to be suddenly awakened by nerve pain in my foot. My nails hurt bad and so I clip them (holding in a terrifying scream as I do). I get comfy again, head on Bill’s chest (my favorite place in the world to be) and I am back to sleep without taking additional meds. for the pain!

Treatment #1 Aug. 17th, 2010

2010-08-23T11:22:00.000-04:00

Today is the big day! Mom is dropping us (Bill and I) off at the train station and we are heading to Manhattan to meet Dr. Robins for my first appointment. I am nauseous, anxious and excited to be starting the big journey! Catch ya when I return.

Later that day: (a recap)

1- Took an earlier train then expected and was able to take time to eat lunch with Bill and walk slower (which really in NYC does not happen, you keep up or get pushed!) and enjoy the sites some. We sat in Central Park and watched people and talked about the appointment approaching faster then the speed of sound, or so it seemed.

2- The city, as mentioned briefly above, is a scary place for someone in pain, sensitive to touch, off balance, and full of anxiety. People push you, bump you, step on you and go entirely too fast or even at times too slow. Cars are blaring, everyone’s yapping to a friend or a cell, music on every other corner, and vendors trying desperately to get your attention to stop at their table or buy their tickets to a show.

3- We saw Spongebob, Elmo, Cookie Monster, a young good looking Elvis all decked out and an 80 year old Madonna who thought she looked hip with pink hair!!!

4- Found Dr. Robin’s building quite easily and he is only 2 blocks from central park. Initial impression is good, it is a clean entry with I think a security guard at a desk and a computer where you can look up the party you need to get to in the 16 floor building with businesses as well as private residences.

5- Okay, so in a very slooooow elevator to the 8th floor! We walk in and oh, wow, I am claustrophobic already and I didn’t even visit his made for a doll bathroom. You bump into yourself just trying to walk in.

6- The mean, snappy receptionist I spoke to in order to set up the appointment was just that way in person to EVERYONE! She has a very dry, uncaring attitude that does not make me feel comfortable to even ask a question. She snaps, “You must be Denise, here fill this out now and give back to me”, I replied as witty and charming as I always try to be (hehehehehe) “Wow, ½ a page, that’s it, no novel for me to write before I see the Doc?” She said nope, this is all and you are way too early! I explained how we came by train from Long Island and I didn’t know how much paperwork would be involved so got there 25 minutes early. She just smirked at me and was like well you’ll have to wait. Duh……..I am use to how appointments work but ok lady……lol

7- Dr. Robins comes out to the waiting area (again such a small area with 3 seats on one wall and 2 on another in an L shape) and points to me and says, “You must be Denise, I just e-mailed Trudy to tell her you were here sitting in my office now”. At least he appeared excited and kind and I start to relax some after hearing a familiar name come out of his mouth.

8- I got called in early (ha ha to the bitchy secretary) because someone did not show up on time and he had two others already waiting besides myself. I follow him to this tiny room with a dentist type chair for me to and one wall all windows looking down on 57th st. (I think) and another wall full of all kinds of natural spices and minerals!! I have to sign two forms for acknowledging that I am being treated as a research subject for neuropathy of the foot (there is no choice in NYS for RSD yet in the paperwork), I am assigned as subject number 13, woohoo, that unlucky number has to be lucky for me.

9- He goes over his “theory” about RSD again and hands Bill literature on ozone and his practice. Dr. Robins asks if I have any questions, which I did but only a few and he comments that I didn’t ask too much at all, I explained that I did my research and when I talked to him before setting up the appointment I had most of them answered then. He takes out his old script pad, that he uses as stationary now because it does not have watermarks and they were not numbered (yup I go to too many office visits), and writes down his home address and discusses with Bill and I as he writes it down the directions to his home for tomorrow morning (between 7-8am and he lives 45 minutes one way from Mom’s place and it is first come first served unless someone has a job to get to)….yup I met him Tuesday and he wants me at his home the next day for treatment number 2, and on Friday for number 3. He is extremely thorough and gives us landmarks etc… which for someone like me who has anxiety over being lost this eases my nervousness tremendously.

10- Dr. Robins now preps my arm and grabs a small butterfly needle. He questions me because I am watching him and wants to be sure I am okay to watch the needle like that, I assure him that this is nothing, I have been through so much already in life that this tiny thing does not phase me. He says alright, closes his eyes and comments that since I am watching he won’t have to and acts like he can’t find my arm at all……..I said just give me the needle in that case and I will stab myself…!!!! We all laugh and boom, it is in, first try! Yay, a doctor with a sense of humor. It did not hurt at all and he turns to this laptop size machine and fills a syringe ½ way with a gas called O3 or ozone.

11- He infuses the tube slowly as it enters my arm, I think, I mean, it is a gas, I can’t see it so how do I know????? It only takes 6-8 minutes and all is done. He makes sure I have his personal cell number and tells me to call it for anything I think is a bad reaction or to ask questions. The number is available 24/7 365 days a year. He expresses his hatred for patients that don’t use it and say the next visit that they didn’t want to bother him, he says bother me, I am the only one who can tell you if it’s the ozone and who better to ask questions on it then him. I am liking this, we (chronic pain sufferers) wait hours, days, weeks for a dr to call back and they are always rushed and say in the end “make an appt. and come in” which annoys us because we could have done that a week ago!!!! He says I want you to come to my house Mondays, Tuesdays, Wednesdays and Fridays to start off and maybe double up somehow later on……(which I probably won’t do, I can’t travel too much right now and especially to the city alone, but will cross that bridge (or not, hehehe) when I get to it.

12- He expresses to me that he is being very aggressive with the ozone in hopes of it helping quicker and getting me back home in 2 months versus the original 3-4 months he estimated earlier, best news I heard all day!

13- I got up slow and Bill and I sat in the waiting area again until I felt like I could walk okay and didn’t show any immediate adverse effects. I am told to wait approx. 10 minutes as the ozone moves through body and bi-product gets exhaled with whatever toxic substances I may have. “Uh Oh! Ummmm, Bill? I feel a lot of pressure in my chest, burning and feels like I have to cough and use my asthma inhaler, I need to…….” Bill: “Denise, don’t panic it says right here, may experience chest or neck pressure, and the sensation to cough is normal, just breathe slow shallow breaths and don’t cough!!! Do you know how hard it is to not cough when you have to????? Okay so it’s normal but it is uncomfortable.

14- I start to feel better and it is time for us to run and catch our train back to Long Island. OMG, we had to literally run down 2 flights of stairs to jump on the train that took off within 15 seconds of us boarding. Way too close for my comfort, and the chest pressure is back!

15- I am truly exhausted but high on adrenaline (euphoric as Mom puts it). Bill plays a game on the ipod with me to kill time on the ride home (which I won, sorry hon) because we are delayed, the train ahead of us is experiencing technical difficulties and our train can’t switch tracks yet, thank God it is not our train!!!!

Finally, back at Moms and overwhelmed with all the questions from family. Plus I had posts to make, calls to return and messages to follow up with…….Don’t get me wrong, the support is amazing but I am over tired, hurting and anxious now about tomorrow’s appointment. I promised so many I would follow up with them. I realize quickly I can’t keep up and do this on an individual basis, I need to start a blog and soon!!!

I am headed for bed earlier then normal because I am so tired from all the traveling the last two days (360 miles to Mom’s on Monday and the train ride to Manhattan today with all the walking) and the early appointment tomorrow. Having to get up at 4:45am I pray I sleep. No such luck, I have severe nerve pain, restless body syndrome and experiencing an anxiety attack that is so bad I need an extra ½ of clonazapam. Slept just under 2 hours and in the car again on my next adventure to Dr. Robin’s house for treatment number 2!

Will I Still Be Me?

2010-08-20T17:00:00.000-04:00

Will I be losing part of my self identity?

In order to answer this question we must first know if pain is actually part of who we are......Pain changes us forever but does the statement "it becomes part of our identity" actually true? I seriously had an anxiety attack over the idea that by some miracle I get complete pain relief will I not know "me" anymore?

I wrote a poem a long time ago titled "I Am Still Me", for those who have not read it here it is:

I Am Still Me

My disease after all these years

Has brought to light many fears

Though I hurt every day that I live

There inside of me, is still so much to give

Some of you don’t recognize me as still the same

And it often causes misunderstanding, hurt, neglect and blame

My dreams in life have remained intact through it all

So please stop laughing and judging as I stumble and fall

The hope of a better tomorrow is always what gets me through

My faith in God and miracles gives me a life anew

My message today very simply put for all of you

Is “I AM STILL ME” in all that I do!

I had a life before pain too and I lost so much once pain was introduced as a permanent fixture in my daily life. I lost my job, which in turn left me without my 'working family' because I no longer worked they could not identify with me and they chose to walk away. My new 'pain family', identifies with my pain and so when that subsides I can presume they will walk too, or not? It took me years to learn how to adapt to being disabled and living a life with pain, I finally feel I have found my niche in this world again. I volunteer for groups about and for pain patients, I write about my feelings and experiences with pain, I have wonderful friends I love and admire who I only met because we shared pain, I spend my days living moment to moment trying all my distraction techniques to not constantly think about my pain, I am constantly going to doctor appointments and specialists seeking pain relief, I have a schedule I have to follow for taking my pain medications and when I go anywhere I always have to keep my needs in mind and pack accordingly.......seat cushion (when I actually remember it), my cane (thanks to Trudy and Laura..lol), medications, soft socks, warm sweatshirt, blanket (in case of AC or drafty areas) and a pair of comfy sandals (that yup I break all fashion rules and wear with socks when feet are too sensitive for air)!

So with all that in mind will I go through yet another metamorphosis? I feel as if I just bloomed where I am in this life, I certainly do not want to be a seedling again!!! I understand life evolves, people change, things happen and nothing is static but my question still has not been answered, will I still be me? Please share your thoughts and experiences on this topic, there is no right answer here, just opinions! Thank you again for helping me explore my psyche along this journey!

One week before treatment starts

2010-08-19T17:19:00.000-04:00

In one week from today I meet Dr. Robins, the very person who could put my RSD and other pain conditions into remission. As I lie in bed at 6:45 am, alone, no sleep, I ponder how really amazing this opportunity for a better life came to fruition. My mind reaches for the stars in hopes of the "miracle" I have prayed for and been praying for during the last fours years since my RSD began. My heart feels different, hearts get hurt, disappointed, saddened, broken, and emotionally connected, so it remains reserved to protect itself!

There is no way to begin but from the very start of the chain of events that lead me to this incredible journey. I decided early this year (2010) that I wanted to attend the Achilles walk/Run/Roll for Hope and Possibility and complete the five miler for the second time in my RSD journey. Some say I had a death wish but so many others were inspired that I would attempt such a feat with all the pain conditions I have. In the back of my mind, and the forefront of my decision making, was the thought that this very well could possibly be my last year to walk the 5 miles. I finished the 5 mile Achilles back in 2008 but just two years later my pain is more intense, much more widespread, and not being managed well at all with current treatments. I knew with the treacherous terrain of Central Park NY (major hills that feel like they will never end) that this would test my stamina, my motivation to succeed and push my body past normal limits of exercise and duration.

The decision is made, we (myself, hubby, sister Donna and her friend Kimberly) are attending this event, walking for RSDSA on June 27th, 2010. Now comes the daunting task of fundraising. My goal was to match or exceed 2008's goal of 1000.00! The brainstorming begins......more like brain drizzle.....fellow RSDers and Fibromites will get this joke! Bill graciously and surprisingly wrote this beautiful letter to the editor of our local Camden paper. Although this did not ultimately result in the donations we hoped to receive it did however raise awareness to my community and sparked 4 women in the area that also suffer with RSD to contact me. This alone was worth the effort on Bill's part. One woman actually lived around the corner from our home, we walked past her house a million times and could see her backyard from our porch!!! Two women had never talked to anyone with RSD before and they were full of hope and inspiration that we were educating people of our community on this horrible disease. I immediately wanted to start a small support group or tea/lunch group once a month just so we all could meet and keep updated and share information but it had to be put on the back burner......but still simmering!!!

Bill offered to go talk to and share information with our local assemblyman who later had a small donation sent to us. So Bill figured what the hey, I might as well go around the village and hang posters and talk to local businesses in hopes of more donations. It may not have ended up in huge amounts of monetary donations but every penny counts and the awareness and education was happening!

Since so many causes had awareness bands and other merchandise items we decided to search online and just see what our options were. Bill found a company that allowed you to create your own band and when bought in bulk was cost effective enough that part of the sales could go to RSDSA for my fundraising efforts. We took a leap of faith and figured how hard could this be????? Oh my, did the orders flood my inbox and we panicked, we are not prepared for this at all. But we managed very well and took each order and logged it in a database and when the funds were received we would work together to ship out. These awareness bands went to Canada, Australia, England, Porto Rico and almost every state in between. In the end, just before the walk, we raised over 1500.00 for RSDSA. Because of my efforts and my story I was contacted by RSDSA to be interviewed the morning of the big day (please see the link below for YOUTUBE to view). I was pumped, now I had to finish the full five, after all I said I would for all those who couldn't, I can Not let my friends in pain down.

It was a hot, humid day in NY but nothing was going to get in my way from crossing that 5 miler finish line.....except maybe my body! With a supportive team (which includes spiritual support as well) and my hubby cheering me on to keep going the whole way I DID IT!!! I crossed that finish line for the second time in 3 years with an average daily pain level of a 7 or higher.

I don't know the why's and how's but Trudy asked me to do her blog talk radio show, Living with RSD, to discuss and hopefully inspire others to educate, raise awareness and do fundraising. I was literally terrified and had all kinds of thoughts floating around like how and why I was so interesting, and could I possibly fill an hour spot. It was a breeze......Trudy and Laura (cohost) are amazing, wonderful women who CAN talk like no one I have met......wait that is a lie, my sister would be good competition for them!!! (love you sis) But, they made me comfortable and so relaxed the time flew by so fast I don't think I covered all I had planned on! USARSD.ORG the wonderful site I volunteer for got plugged and Jason (president, co-founder) was asked to do the show on August 9th 2010. I felt on top of the world, never before did I accept or want to be in any spotlight. I liked the shadows, behind the scenes editing, creating, designing.....definitely not the type to be out there in the open in front of everyone but obviously that was changing and God was leading me somewhere, at the time I had no idea where but He was holding my hand re-assuring me all the way.

Exactly one week after my interview with Trudy and Laura Dr. Robins from The Healing Center in NYC was on her show to discuss intravenous ozone therapy (again I have links below for you to read more about what it is etc...). No one in the US, that he knew of, was ever treated with ozone who had RSD but he firmly believed he could possibly help. To validate his statements he offered Trudy to treat one RSDer as research at no cost, and in return if it works that person would do his radio show and follow up with Trudy's. So, the burden fell upon Trudy and Laura to choose amongst all those interested and pick one person to represent all RSDers, they had to fit certain criteria (I don't know what it entailed) and a means to get to him (in Manhattan) and stay for as long as it takes.

I mentioned that I was interested and had a means to live close to the Dr. at my Mom's on Long Island for as long as I had to. Mind you, I am only thinking with the "I want relief now, I am at a last resort with pain management and treatments" brain! Not in my wildest dreams did I think I would be picked with so many RSDers suffering and needing help. I was wrong! I was asked to do it, to represent RSDers all over and possibly if it worked, make available a new treatment to relieve the excruciating pain we experience 24/7! The excitement of it all was overwhelming and too good to be true! Free treatment, possible remission, no medications added and no negative side effects....really???? Could it really be this easy after 4 years of trying every medication I could, every therapy available to me and being tortured with injections in my spine??

I immediately picked up the phone to arrange my plans with my Mom (who would give me the world if she knew I would feel better, thank you Mom!) and secure a car (my brother's, thank you Dan!), arrange how to see Bill (hubby, whom I planned on leaving behind for months love you honey for all your sacrifices), finish classes I started with Bill which are so important to both of us (will discuss in later blogs) and plan the when I was going, what I needed to bring and what I had to accomplish before I walked away from my current life, home, church, friends and pets!!!