ASL is a Cultural Identity


I love American Sign Language 🤟🏼 ! I am a part of the culture and I’ve been since I was 11 years old! I was mildly hard of hearing due to many ruptured eardrums, untreated. (long story-see private posts and just email me for the password. Email me at: ASLSuzyQ@gmail.com)

Hearing or loss of it, is not a handicap and neither is it a weakness or a disability. Deafness is a cultural identity. I became moderate Deaf in my right ear and Severe in my left; after a Traumatic brain injury due to a motor vehicle accident in 2002! I am proud to be in a culture of warriors and Deaf historians! I’m not totally Deaf, I can hear music but not the words exactly with the music. It’s all a bit mushed together. I miss a lot in verbal conversations. I nod my head and wish for the best. But once in awhile that may happen to me in a room of native ASL users as well. I feel a bit lost sometimes in such instances. I’m so very lucky to know what I do know about the naturally formed language of ASL. I’m fortunate for my experience as an Interpreter at a hospital and at Universities and school settings in the past. Ironic isn’t it, how life can take a turn?

But what does bother me is when people pretend to know ASL, because they know “signs”. The first lesson in ASL is that a sign does not equal a word! A sign equals a concept! I go on YouTube all of the time and I see people acting as though they know the language. They post a song and then post a “tutorial ” and then proceed to teach others incorrect signs and fake ASL; which is PSE at best. But do you know that PSE is not a language? It’s just a mush mash of signs in English word order. So then, you’ve taken a beautiful Language like ASL, and desecrated it! Anyone can do anything they want because it’s the internet. If you want to post songs and such in “Sign Language “, then by all means, feel free. Just write up a bio and explain that you’re just trying or you’re practicing your use of ASL. Say that you’re doing your best or that you are learning the language. But don’t call it ASL, unless it is. Then please do not post a tutorial unless you’re truly sure it’s correct and grammatical ASL. It is just the respectful thing to do. We don’t like our language polluted & then taught incorrectly to others who are vulnerable and learning.

I have a few videos up from at the beginning, right after my car accident and TBI. Those aren’t my very best ASL. But I always post about the reason why it’s not my best, in the comments. But I don’t make tutorials because each person may sign the same song a bit differently. It’s a choice in lots of instances; a choice of which signs for the concepts you want to convey.

Yes, please learn the beautiful language of American Sign Language, ASL! But don’t be arrogant and don’t be a student teaching other students! Let the teachers, native ASL language users, Deaf community & CODA’s teach those who wish to learn! I honestly do not mean to dissuade anyone from making videos and having fun. I only mean to please not make tutorials if you truly don’t know for sure that it’s ASL. Don’t be the “blind leading the blind”! That’s what I’m getting at most of all, I suppose.

Feel free to join my ASLExpress group on Facebook. We are a group of people who love the language of ASL. We enjoy Deaf culture and we share communications and stories in ASL. We are a group of Deaf, HH and Hearing persons who love, use and respect the language. We are a combination of all levels of ASL users; from beginners through native Deaf. We like to teach, learn and make friends.

I also have a page called “ASLSUZYQ”; on Facebook, Instagram, Musically & Tumblr! I don’t claim to know it all. I learn new signs everyday! I’m always willing to help and take advice from the Deaf”elders” in ASL! I’m actually taking an online course in ASL gloss for songs. It’s called “Beyond Words” with Rosa Lee Timm! It’s a blast, though due to chronic pain and illnesses, I’m a bit behind. Thanks to the Internet, I can go at my own pace.

One Call Away in ASL is my new ASL Cover on my YouTube Channel. This link will take you to my YouTube Channel @ASLSuzyQ, My ASLSUZYQ Youtube Channel !<br<br<br
nddaughter and I have 3! I'm teaching them ASL while they're small because young minds are like sponges. The littlest ones learn the language so fast!

Days #3 And #4 *(And beginning of Day #5) -Withdrawals from Fentanyl Lollipop


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Hi Luvs,

Ten years I’ve been on those Fentanyl lollipops for Breakthrough pain. My GP, Dr. Peter Bullach, kept on telling me “TRUST ME’….”NO WORRIES, you’re out of that hospital bed and out doing a few things now”…..he’d say “Let me be the eye in the middle of your storm”….well that all went to HELL when he decided to get into some kind of trouble for writing too many prescriptions while the DEA decided they’d better check into him and they clearly did because now he’s working at an urgent care in Jackson, MI “Med Express” on NW ave. Except don’t go there if you want prescriptions because he’s unable to write them…yep..”THOSE” kind….not anymore…I’m so angry I could just spit. I’ve never hurt anyone, never will and never wanted to…I always just end up hurting myself….I just wish he hadn’t done this to me and now I’m just whining..

So it’s gone through now Day #4 and starting Day #5 and today I went to the Univ. of Toledo Medical Ctr. and saw the famous Dr. Blair Grubb and his Posse actually! I had my pacemaker checked and saw Dr Beverly but she felt badly but couldn’t do anything for me really?? She pretty much gave me a soft hug and sent me on my way and told me that I’d see the Dr next time in just a few months. Im upset because once again they have those new “patient online portals” and they have half of my information incorrect. UGGH What is wrong why cannot they get things straight?? I wonder how much was wrong when I didn’t even know about it?  It made me angry and I want it fixed because I don’t like my information, my medical info wrong. I wrote a note and told them to please fix it!!

Today has been the worst day ever so far. I cried probably 90% OF THE day. I writhed on the couch and couldn’t concentrate on even my Iphone or computer or anything. I finally slept some when I convinced Craig to call my new GP and ask for Clonadine after I  had read on a forum for people going through withdrawals from something online. It says if you can get it , it may help calm you down and help with pain. So I tried that also now and it did finally help me calm down to sleep on the couch awhile tonight. Also I did not take the Dilaudid because it just keeps making me sick to my stomach as if it’s going to explode along with my body which feels as though it is soooo much on fire that I’m surprised I haven’t spontaneously combusted yet!! UGhh…this isn’t going to be a long one because I can barely eek out this one at all. But I wanted people to know how I’m doing and it seems as though they want to know and are interested.

So today we went to Univ. of Toledo Med ctr. to see my Dysautonomia/POTS /Neuro-Cardiologist and they just saw me in my wheelchair with my blankets over me for pain and heat as I go between freezing cold and wanting to blow up from heat and feeling of being on fire!! So they couldnt do much….I had hoped that they would do more but they just didnt.

Therefore I spent the better part of the day there, in the car and at home on my couch crying and writhing in pain and feeling so out of touch as far as feeling like I want to stretch and yawn and sneeze all of the time and feeling jittery and then I have ativan for that but who’s going to help me get off of all of this crap later?  The Pain Dr. said the Fentanyl suckers were “DANGEROUS” but how much more dangerous can they be? I’m on the patch all of these years and so are many many people. Its Fentanyl and its all the same. I’m not a drug addict and my body may be dependent but I’m still not an addict. That’s not fair when I never asked for any of this and never even took an aspirin for a headache prior to all of this !!

I wonder if my Dr’s received their letters in the mail yet? Maybe tomorrow huh? I hope that it at least makes them think and not hurt anyone else…Although they are so arrogant it probably won’t matter at all to them. Especially Dr Dobritt, he probably won’t even read it himself. His little teeny bopper clerk will probably read it for him and protect him from “mean and bad me”!!! Well starting day #5 now and it’s not gotten better but only worse and I will be calling the pain Dr today.and I want to ask him if there’s any kind of shorter or quicker acting pain relief that I can have because the Dilauded is chewing up my stomach and I am having a terrible time of it. I thought by now I’d be writing to you how great I’m doing and so happy to be done and feeling so strong! But NOOOO…intsead I’m feeling whiny and miserable, crying and in writhing and in pain. Im so tired of diarrhea and stomach cramps and not being able to sleep and when I awaken in the morning and now not being able to take that sucker, I have to lay there for about an hour to 45 mins. before I can even get up or try to get up!! Itfe feels like I’m getting up on broken feet that have glass in  them and they’re broken in a hundred places…then it feels like my hands just hurt and want to explodell Getting up in the morning is the hardest of all and I dont like doing it without help and my husband wants to get up early to go get me a Dilauded so after 45 mins it can maybe work?? But they are not working for some reason for me…I took them for emergency pain help for severe pain afer a fall or a surgery and they seemed to help…they just are not made for me to take every 3 hours…I cannot….IM not…what am I going to do??? We called and got the Catapress or (Clonandine) to help calm me and help with the withdrawals and the pain…so remember that one folks…try to have Ativan or Xanax or something like that along with Imodium or whatever you can use for diarrhea and also get something to help with nausea like I did. Now I had to get TIGAN because it was the only one that didnt’ interact with either the pain patch nor the other stuff i’m on…but the Tigan has not worked for me at all. It did not help my diarrhea instead it made it worse. It also did nothing for my nausea….just saying…trying to help..

Gotta go try and get some sleep feeling really bad and gonna start to cry again…love,suzanne xo

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Day #2 Withdrawals from Fentanyl Lollipops


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Well my friends, today is the end of the 2nd full day of my withdrawals from the major doses of Fentanyl Lollipops that my old GP had me on for the past 10, 11 years now. Yes….I do have many high pain issues but he should not have done this to me. Nothing I can do now, I cannot whine or complain because I must get to the business of getting off of these totally and never going back. But I cannot say that I’m not afraid. The suckers are so far the only thing that have worked for my horrible pain! Everything else either makes me really sick with awful side effects and nausea or it doesn’t seem to work well for me.  Today I’ve felt a little bit less of the “wanting” for the suckers. I have felt chills and I have also felt as though I am going to burn on fire until I am just ashes on the floor. I feel so hot …..no..you just don’t understand….I feel so hot and I sweat and I’ve had this feeling all through my RSD/CRPS too, but this is even more powerful. It wakes me up at night and I’m soaking wet and I just wanna “die”. No …,not really. …I don’t want to leave this world or die…it’s more of a “feeling” when that happens that I just need for it to end right then and I cannot take it for another moment.

Today, I had to go to my GP…it’s only my 2nd time seeing him. I am unsure about him. The other one, my old one..he did take over when his partner left after 12 years. He did get me the meds that I needed to keep me from being so deathly ill or dying. I think that he thinks the only reason I went to him was for the suckers. Well, he used to be my full time GP and I started seeing his “new” partner 12 years ago  because he was so “nice” to me and kind when I was hospitalized for pain control. I had been a  patient at first of the Dr. who has taken over since my GP of 12 yrs left abruptly after over medicating many of his patients including me . **My former Dr/GP went to an urgent care in Jackson Michigan called Med express. He cannot write controlled substances anymore because the FEDS came into their office and he was found to be over medicating people. Unfortunately, I am one of them. I have been a trooper, motivated and trying with all of my might to get lower and lower doses of the pain suckers since January 2015. I got down 80% and now since Sunday night going to bed with one in my mouth, I’ve had ZERO….NADA….NONE!!! I’m now in my 2nd full day and at the end of it actually.

I was a patient there actually since 1986 and the Dr. who has taken over my care, WAS and had been my GP since that time and until I asked the “new Dr” to be my GP when I was hospitalized in 2002 following a MVA. I only stopped seeing the first Dr. because of my parents, who had been horribly abusive on many levels while growing up and even as I was an adult and I confided in him. He helped me to get my SSDI and he believed in me. Until one day 10 years later, my parents walked into his office and started becoming his patients. Instead of him telling them that it was a breech of some kind or unethical or something, he came to my patient room and told me “wow your parents are now my patients too! They seem like nice people and they say that they’ve done none of the things you alleged that they’ve done!! You seem like a nice person too and now I don’t know who to believe”??? Well, that was enough then and there I got up and left that practice. I tried a few other Dr’s but didn’t really like any of them. Then after the car accident I got scared because I knew so much was wrong and I had so much pain issues. I needed to go back where my records were and where someone knew me and my history. I told him what I thought about what he said and did and then the new dr arrived on the scene and to make matters easier for everyone, I started seeing him, Dr. Pete Bullach Jr MD.

Well, he helped me and told me that he would “be the eye in the middle of my storm”. I wouldn’t allow anyone else to prescribe meds for me. We tried many different pain meds and they all made me ill, sick, and left with my pain. They didn’t work for me and 99% gave me very bad stomach issues including pain and cramps. I finally found the suckers and they worked for me. They worked for 10 years for me. I did suffer from a heart attack shortly after starting them and then one year later I suffered a CVA. Who knows if the suckers were the culprit or if it was the TBI or any other number of reasons? But I’ve since read that the Fentanyl lollipops long term, can cause such problems with health. The pain Dr. I have now and who I’ve only seen one time so far and will see again at the beginning of August, he says that they are for “end of life” and they are “very dangerous”. I don’t understand the dangerousness of them though? Why am I able to stay on the Fentanyl patch and take Dilauded but these are not dangerous?? I guess I just don’t understand. I am just blindly doing what I have to do because either way I need to get off of some of these things because I absolutely HATE feeling “married” to these pain meds and the men with the power to write them for me.  The Government thinks they know what pain patients need and they think they know which kinds of pain are worse than other kinds of pain. Who are they or anyone to say that One pain illness is more painful that my very painful pain diseases called “COMPLEX REGIONAL PAIN SYNDROME” or “CRPS aka RSD”…??? I will never understand but I don’t care. I am strong and have always been strong. I don’t like the feelings of withdrawals and as of day #2, today, I don’t crave the “sucker” part so much. But in waves I feel terrible and in pain and tired, exhausted and sick. I don’t know what will happen but I pray that this new pain Dr will be good to me and keep on believing in me …

I dont know if I have shown you the letter that I have written to the : Dr who took over for my old doc who got into trouble, to my old GP who is at the Urgent care now and the same letter was sent out to the pain Dr who took good care of me and I was a good patient of his from 2002-2005, but when I went back for help at the beginning of this ordeal on January 2nd, 2015, he refused to help me or see me unless he could pass me off to a “friend of his” to be “screened” first by him  because he must not trust his own judgement? I’ve sent them all a letter and I would love to share that letter with you. Below please see a copy of it. I do praise the one doc for helping to take over me and help me through this even though I’ve heard that there are and have been very very many that he just totally “threw overboard” and “let go” and gave them a script and sent them on their way and told them “not to come back”. These were legitimate pain patients because I knew or know a couple of them. I feel or felt the need to get out what I needed to say. I truly am thankful for the one Dr/GP for helping me to go down 80% off of the suckers. But I had no choice in the matter. I was and am at the mercy of all of these people and I absolutely hate it. With my background of abuse and PTSD, it pains me to have someone else in charge of me and my care. I can only hope that the new Dr will continue to believe in me and care for me in a kind and caring way and never give up on me.

So here I sit at the end of day #2 and I’m feeling very very ill, hot and burning up as if to be on fire!  I feel cramps and runny nose and eyes and cannot eat much or hold in anything much. I’ve been trying to to drink but when I have hot drink, I burn up and when I have cold drink, I feel freezing cold. Everything is screwed up and I feel like I am unable to concentrate on anything. I am vlogging this experience on YOU TUBE also. So far they are “private” and if you want to watch them, please email me : suzannebstewart@aol.com and I will put you allowed to watch the videos. There are 2 so far and they are dark and made at night, very late when I’ve been feeling my very worst.  Thank you for your interest and I hope one day that this account of my days going through this ordeal, will help someone.  Also, things that help with the fire or “on fire” feeling are : cold paks that are in the fridge, around my neck and cold drinks. When I’m hot I try wearing light clothing and drink more cold drinks as I’ve said and I’ve been sitting stilll, quite still. I’m having a hard time with concentration too. Please check out the letter that I’ve sent out to all 3 Dr’s, below…..thank you again, Suzanne

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The Letter:

July 13,2015
Dear Dr’s Brateman, Bullach and Dobritt;
I am writing one letter in the same, to all three of you. First of all, to save myself the work of trying to say many of the same things to all 3 of you. Also, this way you’ll be able to better understand how I felt about the breakdown of our patient/Dr. relationships.
First of all, I want to say “thank you ” to Dr. Brateman, for allowing me to stay on as a patient and help me reduce my pain medications. Between Jan 1st and July 13, 2015, I brought myself down to Zero, from the huge amount of Fentanyl prescribed for me (by Dr. Bullach). Dr. Brateman was the only physician who had the guts to stick by me. I’m a chronic pain patient with quite a list of real and horrible pain issues, including Systemic “CRPS!
I have been through a lot in my life, but this has got to be right up on top with the worst treatment of a human being that I’ve personally felt. I’m astounded and ashamed at the treatment I’ve received from Dr Bullach , who told me for 12 years to “trust him” only to be betrayed and left to suffer on my own, if not for Dr. Brateman.
Next, I went to my scheduled appointment on Jan 2, 2015 with Dr. Dobritt. He informed me that he “never received a letter, records or a phone call from Dr. Bullach regarding my case”. Another deception by Dr Bullach. During that same appointment, Dr Dobritt initially indicated that he supported the treatment regimen that Dr. Bullach had me on. But then he “back peddled” and referred me to another pain Dr. I told him that I didn’t wish to see another Dr. I’ve already seen multiple specialists as a result of a MVA in 2002. He’d been my pain Dr. for 3 years following that MVA and I had trusted him.
I went back to Dr. Dobritt in April 2015, after I had gotten myself down 80% from the Fentanyl prescribed originally by Dr. Bullach. I thought he would be proud of me. Imagine my shock & dismay when I arrived and Dr Dobritt refused to see me. He sent a clerk to tell me that he would not see me because I had not gone to be screened by the other pain Dr. prior to this appointment. I cried and begged for him to help me. I was afraid and felt alone in my physical pain and feelings of betrayal and mistrust with the medical professionals who are bound to “first do no harm” according to their own creed. I felt betrayed by his obvious attempt to pass me off to another Dr. instead of helping me.
Because of my own tenacity, I have since found a caring pain Dr. who has helped me get completely off of my former regimen of pain meds. He was equally appalled at the way I had been treated by physicians that I had trusted. Dr. Bullach, your actions; and Dr. Dobritt, your inaction, put my health and possibly my life at risk. You should both be ashamed at the way you treated me and you left Dr. Brateman to clean up your mess. I hope that the two of you do some soul searching and NEVER treat another human being the same way that you have treated me.
With deep sadness, Suzanne Stewart

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The Beginning of the End…..And A New Beginning


Hello Luvs,

So here I sit, as I used to write about heartache, heartbreak and of things in the past, now I am writing to you in writhing pain as my Physician of 12 years just up and left many people in pain and left us out to allow fate to have it’s will with us. I know that I’ve written to you of late, how my Dr left and how angry and upset I’ve been. I wrote about how the pain Dr. that knew me in the past, right after my car accident in 2002, wouldn’t even see me or help me because of a “situation” and for no other reason. He didn’t want to be “involved” in a mess of being inundated with pain patients from this physician. I’m pretty sure some of them may have been unreal and faking their pain but many, like myself, have real pain issues. I think I told you also about the other Dr. who owns the practice and how he is very very angry at being “left with a mess” of pain patients on all kinds of pain medications and way too much!  This would mean, including me! My old Physician left, but in the past 12 years he was like a big “teddy bear” and kind and he had kind eyes. I never thought for even a moment that he would leave me “out to dry ” like this…..or even “to die”.  I don’t want to repeat myself, but I have much to say about this subject and I think maybe people can learn something from this experience. You have to stop being afraid, like I have been or had been in the past. Sometimes I am still afraid but I do my best to keep on going and not be afraid.

Back in 2002, I was in a horrible car accident. I was poo poo’d by the hospital called “St. Joe’s” here in Ann Arbor ,Michigan.  I had been on disability since 1998, for PTSD and CKDII.  When my disability was approved, they called my husband and told him that I “didn’t even have to go to their own Dr’s because after reading my several Dr  reports, they didn’t want to put me through having to tell my story even one more time. I was approved!”  I tried to get the nightmares and the fear to stop. I was trying so hard and the possibility of trying to return to my job at the U of Mich. hospitals as an Interpreter for the Deaf and as an Outpatient clerk III, felt like it just might happen one day. But then in August of 2002, a man ran a red light while fighting with his wife and I was hurt bad as his car T-boned my car and I lay unconscious on the cement afterwards.  I was out for about 20-30 minutes I was told. Then taken by ambulance to the hospital where they did some Xrays and put me in the ER for many hours and left me there. One Dr. was wanting his shift to be over and he was going to send me home. I had just been screaming so loudly during Xrays, that my husband said people were leaving the waiting area so as not to hear my screams of pain. The nurse that was assigned to me that night, I wish I could thank him someday in person. He saved me. When that one Doc was going to try to just “send me home” when I couldn’t even stand or walk or move without being in horrible screaming pain, he called a trauma Dr. She got the bal rolling and they admitted me.  But sadly, I still did not get the care that I should have gotten and they just let me sit in shoulder  braces for 5 days until my husband finally brought me home to take  me to some good Dr’s that might help me. At the hospital I was looked at differently because I only weighed 99 lbs. I was tiny and 5 feet 5 inches tall. I had been going through Anorexia off and on since I was about 17 years old. That is another whole story in and of itself. But I was still very sane and smart and not crazy in any way, shape or form. I was not on any medications, but I had been seeing a wonderful Psychologist who was helping me makes sense of some things that had happened to me while growing up and while as an adult member of my family as well.

So after 5 days of being NOT treated kindly and NOT being diagnosed properly, my husband was so appalled at the way things were happening or NOT happening, that he took me out of there. I ended up finding out that I had suffered an MTBI and several other horribly painful injuries. After 3 years at the Ann Arbor Rehab center for TBI’s, and after 10 surgeries or so, I finally know all that went wrong and I’ve had to go through many horrible Dr’s appointment experiences but I’d finally found some help. I met a great Brain Injury Dr. at St Joe’s and he helped me every step of the way. He was not on “My” side but on the side of truth and right and goodness, which was the same side that I always try to be on! I got help dealing with the short term memory loss and the difference in my personality a bit and I learned that I was now unable to read large books such as the “Harry Potter” series, but I could read Magazine articles. I am unable to still remember things that I’ve read. But when I’ve heard the same things several times, then I surely can remember them. I ended up having 2 screws put in my left shoulder because after a year of seeing several shoulder Dr’s, they all told me that I just had some “torn rotator cuffs and then frozen shoulders”. They kept on sending me to painful PT.  Later, I finally did not give up and found a Dr. to listen to me and he sent me to the Cleveland clinic. Dr. John Brems, orthopedic specialist, told me that he could do a “nerve and muscle transfer from a cadaver” but he then thought it might me just alot more pain for me and it would only have fixed one thing out of many issues for me at that time. My new shoulder Dr. though, told me that I in fact “was NOT crazy” and he had to go into my shoulder in an open surgery and unattach my biceps tendon (which had grown attached to the bone wrongly for over a year because nobody would listen to me) and reattach it to the bone with two titanium screws. It helped the nerve “zings” immediately and I was so greatful to him.

I was in the hospital for pain control when I met Dr. Bullach. He was a kind man and he had a kind manner about him. I had been seeing the other Dr. in the practice since 1986, and we got along great.  But my parents decided to go to him 10 years after I’d been a patient there and they started telling hem that all that I’d told him “was a lie”. He got confused and he came to me telling me that “they seemed like nice people and I seemed like a nice person and now he did not know who to believe?” I saved him the trouble and I left the practice. Only to return when I got afraid after the car accident. I came back because they knew me and had years of my records and I was in pain and afraid. Lucky for me, there was a new Dr there and I got along great with him so I switched over to Dr. Bullach for the next 12 years. He had no problem believing in me and he talked to my other Dr’s and Psychologist and I had a great team.  He always told me that he was “the eye in the middle of my storm”. I believed in him and trusted him. In 2005, after trying so many medications that all made me either very ill or I was allergic to them, he started me on the Fentanyl suckers and the patches together. It was only the 2nd time that anything had worked for my pain. With the pain Dr. I had been on a medication called “Kadian” and it was extended release Morphine. It worked for 2 years and then just stopped working. The pain dr. wanted me to get an Intrathecal pain pump. I didn’t want something else put into my body, let alone stuck into my spine dripping medication into it and being “dependant forever” on another human being to fill it. I decided to just stick to meds and therefore the pain dr stopped seeing me. He turned me over to dr. Bullach to just give me pain meds and said that he “could consult with him at any time and he would help”. That never happened because Dr. Bullach put me on the above 2 meds and I stayed on them until he left the practice in December 2014.

I had gotten a letter from the insurance company stating that they “would not be paying for my pain meds after March 2015 unless a pain dr. agreed with Dr. Bullach’s treatment plan.”  Well in December, Dr Bullach got into “trouble” and left the practice to go and work at an urgent care in Jackson, MI. He wrote too many prescriptions for pain meds for too many people. He over medicated too many people and I was one of them. I had no idea because before that MVA in 2002, I never even took an Aspirin for headaches. I never had pain issues before! I had no idea what was happening or what was about to happen to me.   Dr. Bullach just kept on telling me to “trust him” and “not to worry”. For the past 3 years I had asked him to help me go down from the meds i was on. I was afraid of being on too much and I was worried but he just kept on telling me that he got “me off of the hospital bed in my living room” and if and when the time came, he would help me get off of the meds.  Well, the time came and I had no control over it and he was nowhere to be found to help me. I was on my own and very afraid.

I went back to the pain Dr. that helped me for the 3 years following the car accident. He was good with me and believed in me and I in him. I was compliant and did what he asked and it all was good. But when I went back to ask for help after dr. Bullach left, he didn’t want anything to do with me!!! He wanted to sell me out and he saw me one time only to tell me that I had to go to be screened by another pain Dr. friend of his!  Have you ever heard of a pain Dr. not feeling confident in himself and having to send someone to a “friend of his” for a consultation? It made no sense until I heard him say that He really was “inundated with many of Dr. Bullach’s pain patients and many of them were just drug seekers and he didn’t want to be any part of that”.   But he knew me? I didn’t do anything wrong? I had only always done whatever was asked of me? What did I do wrong? I needed help and nobody would help me. I was very afraid and didn’t know where to go or what to do. I knew that I did NOT want to go and see his “FRIEND” …..after looking him up online, his friend was a “Dr. Malinoff” in AnnArbor who is in “detroit hourly” magazine and who gets “awards” for being such a great doc….in print!! But from what the hundreds of people wrote about him in many many reviews, I was not about to go and see him EVER! I read up on him at his website. He even states there that he broke his own foot and didn’t even go to a Dr. for 3 months. His wife finally forced him to go and he had a broken foot. He prides himself that he walked on it all of that time without even a pain pill! He had surgery and he again prided himself on “not taking anything for pain”. He even said that If you wake up in the morning and put your feet on the floor and you don’t have pain, then you should be looking for your name in the obituaries!!! I won’t quote that because he said that his father said it and he also believed in this view. But I don’t like to quote things unless I have the exact words and I’m not 100% sure of the exact wording, but this is truly what he said on his website and you can find it for yourself just by looking him up in Ann Arbor,MI.

Now, I have always been a person who never drank or took any drugs of any kind. I was NOT going to see this Dr. who I had read about and heard about from other pain patients that I admire and trust; when what I’d heard was very bad practice. He takes peoples medications away from them and puts them on Suboxone or Methadone right away. You are not even looked at as an individual and to see what might or might not work for you. This is what I’ve heard and what I read at his website as well. I am a good person who never drank or did drugs or anything bad and there was no way I was going to be sent to this place and then to possibly be put on who knows what list and never ever be helped again in my life for the real pain issues that I have. Even the first pain Dr. agreed that “I had many big pain issues” and he was very sorry but he just couldn’t take any of Dr. Bullach’s patients on.

I persevered and I finally found a pain Dr right here in my own town. He is awesome so far and I liked him very much during my first visit to him. I will see him again in August. But he did take me off of the Fentanyl Suckers. He says they are “very dangerous and I should never have been given them”. He said they are for “end of life” and for those who do not have stomachs to swallow meds. etc.  He is keeping me on the patch and he gave me a different medication for my pain and I will be starting it “cold turkey” on Monday July 13th. I’m scared as I’ve gone down from my suckers from the 20 or so that Dr. Bullach had me on and now to only 3 per day. But it’s still a scary thing when I’ve been on them for almost 12 years and they are what has worked for me. So far the new meds that I’ve been trying to start taking a little bit here and there, are not working very well. I’m feeling very sweaty and sick and nauseated and my pain is not going away at all. No break from the pain like I’m used to getting with the suckers. I’m doing it but I’m scared and in only two more days, I will wake up and only have the pills and the patches. ….no more Actiq suckers and  I know I can do this but it’s so hard and it’s hard already and I’ve just gone down to a couple per day, how will I do with zero?? I guess we will all see very soon. But as soon as I do this all by myself, but still  with a new pain Dr. by my side and my wonderful husband, I will be sending out a letter to the one Dr. who did take over and help me until I could find a different pain Dr. to help.  Also to the other 2 Dr’s who refused to help me, they will be receiving a letter as well. One will go to  Dr Bullach, because he truly hurt me by leaving and not caring about me at all…and then the pain Dr. who was going to “throw me to the wolves” and didn’t care one bit either!

Here is a copy of the letter that they will be receiving: (I will post the copy of the letter next week at the end of the week after I know the letter has been received by the appropriate Physicians).  So watch for that letter, I will post it probably next weekend sometime….I look forward to you reading it…thank you so much…Please pray for me and wish me luck because I’m afraid and feeling awful sweaty and sick already as I write this blog today…sending Love, Suz

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Trials of a Chronic Pain Patient…..


imagescanandwill  Hello Luvs,

Have you been betrayed by your Dr? Do you feel like a “common criminal” because you are a legitimate chronic pain patient? Then please read on:

So if you follow my blog at all, you know that my GP, or my General Dr. of the past 13 years just quickly left the practice he’d been working at for many many years. I had an appointment in October 2014. I showed him a letter that I’d rec’d from my insurance company stating that I must go to a pain specialist and that he/she must agree with my GP’s treatment plan; in order for them to continue paying for my pain medications. The letter also stated that If the pain specialist did not agree, they would stop paying for my pain medications on March 1st, 2015. My October 2014 appointment was only for the purpose of making sure my Dr. would help me arrange the pain specialist appointment, send him a letter & call him to explain my extensive and unusual situation. My GP, had been the one person I trusted other than my husband of 18 years and my Psychologist of 15 or more years. I don’t trust many people due to my longstanding history of being abused and being a survivor of domestic violence. That is a story for another day, but you need to know why I feel so betrayed!

Since my car accident in 2002, (*a man ran a red light and I was injured terribly), I have endured so many injuries, surgeries; including 2 pacemakers, along with suffering a Mild Traumatic Brain Injury (3 yrs of TBI rehab), a stroke and a heart attack! Then to end up in 2007,after a foot surgery with CRPS type II. The CRPS II then spread and has been systemic since after my 2nd pacemaker surgery, when they found that my 1st pacemaker had worn a hole right through my pectoral muscle; which then had to be rebuilt.  My excellent Neuro Cardiologist researched RSD/CRPS and found that sometimes an inner surgical wash of “Bipvucaine” (*which he did do) may help stop the spread of the disease. At or about my 6 week post op checkup, I found out that my CRPSII did spread and it is systemic. My pain is very high and I have several other pain illnesses and auto-immune/Neuro autoimmune disease.

I had been to an excellent, well respected and kind pain Dr. He has a good bedside manner and is very intelligent. He tested me in every way possible. I followed through with whatever tests he wanted and I did all that he asked of me. I had several Epidural blocks, trigger point injections, Cortisone shots, Biofeedback and more. I was tested by the pain Dr’s own Psychologist and Psychiatrist. They concluded that I did NOT have an addictive personality. After trying many pain medications which either made me ill or that I was allergic to, we found one that actually worked well for about 2 years. When all else failed, I was offered an intrathecal pain pump; but refused it.  I am a smaller stature person and could not imagine something the size of a “hockey puck” inside of my gut & under my left rib cage forever!.  Finally, I was put on a pain patch for 24/7 relief and pain lozenges for breakthrough episodes. Because I was only receiving pain medicine and needed it in order to try to have any kind of quality of life whatsoever; the pain Dr. referred me back to my GP, who was Dr. Bullach. He  told me that he would be  “the eye in the middle of my storm”. He would prescribe all or most of my medications. I lived with those meds for the first 3 to 7 years. Finally, the pain stabilized and I stayed on the same dosage for the next 5 years.

I started out after the car accident, being in a hospital bed in my home or on my couch as well. I could not even move without excruciating pain. When I got to the point where I was put on the pain meds that Dr Bullach gave me for those 10 years, I was able to do a few things. I was able to get out of the house. Every time I would ask Dr B. to reduce my level of pain meds, he would tell me “No …you let me worry about it. You don’t want to end up back on that couch or hospital bed again.” He told me that “I should not worry and if/when the time came & I was able to reduce my pain medications, he would “put me into the ICU so that I wouldn’t have to go through anymore pain”. He told me that I would “wake up and it would be over without my having to go through feeling any of the withdrawals.” But every time I would ask him to let me reduce the amount, he just told me the same things. I trusted him and He told me that he was “the eye in the middle of my storm”. He told me not to worry about anything! I did trust him, but still I worried.Though I’m very naive, when it comes to medicine because I never drank alcohol, smoked cigarettes,pot, nor had I ever taken any prescription pain or street drugs in the past; prior to that car accident. I am a lay person and had no idea what a good amount or a right amount of pain medication is. I trusted my Doctor for that!  I wish to reiterate that I asked him over and over again, to let me reduce the pain meds.  I acquired RSD/CRPS in 2007, after surgery on my foot. I have it as well as the other car accident injuries and surgeries. Later, the RSD/CRPS II spread to my full body.

So….in going back to that letter that I received from the insurance company, I took it to my ex GP, Dr. Bullach in October 2014. I felt it inside of my heart and soul that very day, that something was not right! He looked me deep into my eyes and said “you need to just see a pain Dr and he will agree with my treatment and its just a formality.” I told him that I was afraid….scared and could I go back to the same pain Dr. that I had known, liked and been to for several years prior. He said I could go to that pain Dr and because I was crying and afraid, he absolutely promised me that he would  call and personally speak to the pain Dr. and send him everything and /or anything that he may need in order to help me get my medications continued and paid for; in order to keep my pain at least at the level it’s been at,so that I could continue to have some sort of a life outside of laying on the couch in pain all of the time.

When we left that appointment in October, I told my husband “something was not right today”….I said that it felt weird and different. I told him that Dr. B. looked at me so oddly as if he wanted to say something but instead he was robotic and went about his business. I took him at his word when he said he “PROMISED to call that pain Dr. and send him a letter with all of the info he might need, in order to help me.

I made my pain Dr. appointment for Jan. 2,2015. But prior to that appointment, I had one more appointment with Dr. B. and had no idea what was in store for me. Two days before the appointment, with no prior knowledge; I received a letter from the other Dr. in the practice, the one who actually owns it.  It was very short and just said something like “Dr Bullach will no longer be seeing patients in our office as he accepted another position at an Urgent Care in another community, Jackson, MI; about an hour away”!!! I was not only shocked and devastated, but afraid and just couldn’t stop crying. I trusted another human being and yet another human being broke that trust! All I could think of was “what is going to happen to me now?”

I went to my appointment, the last appointment with my Dr. Bullach. I spent the whole entire visit for about 40 minutes, just crying. They never examined me, nor even touched me. I didn’t get my blood pressure checked, my heart wasn’t listened to and I have Atrial fib, Long Q.T. and a pacemaker.  The Dr. did nothing that day (he did nothing the prior appointment as well, which I also thought was odd). It was as if he’d just given up on me and didn’t care anymore. He would not give me my prescriptions that he’d been giving me for the past 10 years (although no increase the past 5 yrs). He told me again, “not to worry because the other Dr. in the practice would take care of me just the same and he would prescribe the same meds and everything was going to be O.K”. The medical assistant, “C.” even told me those exact words. She even told me that “if the new Dr. didn’t write the scripts the same way Dr Bullach did, that she would take him into the hallway and explain to him what to do and how to do it”.  They all told me “not to worry” and “my treatment plan would stay the same”.

I went to my pain Dr. appointment on Jan 2nd, and he was surprised to see me. He had no idea why I was there. He had received ZERO information from Dr. Bullach !  There was no letter sent, no phone call absolutely NOTHING came from that office. Finally the pain Dr. decided to call that office and he spoke with the other Dr. there. He came back to tell me that the Dr. I’d trusted all of these years, had “over medicated me up to many many times the normal amount”!! I was in shock as was my husband.  I was angry and afraid!  I suffer from PTSD which is one of the health issues that has rendered me “disabled” since 1998! The pain Dr. and the other Doc at  my GP’s office spoke and  “THEY” decided that I should go to a brusk,  physician who doesn’t believe in pain medication except to detox people! He detoxes everyone and puts them on something else like Suboxone or Methadone as if all  legitimate pain patients with HUGE list of pain diagnosis’ like mine, are just equal to a common criminal. I researched that Dr. and we spoke to the Dr. who owns the practice where my GP had treated me for all of those years.  My research proved that the “detox” pain Dr. does NOT believe in Opiods, Narcotics even for legitimate pain issues, diseases etc. He has 16 horrible reviews on several “rate your Dr.” websites.

When my husband was on the phone with the Dr. who owns the practice where I’d been going all of these years, I could hear him yelling over the telephone while my husband was talking to him. He was angry and yelling loudly. He said that “Federal Marshals came into their practice, and that my Dr. B. over medicated many other patients, not only me! I’m furious to say the least. But I also heard him say that he could no longer see Dr Bullach’s regular patients or prescribe meds for them any longer.

I am feeling so betrayed and hurt and afraid. He left me on a high dose of medicine and gave me no choices except to go to a scary place and have all control taken from me. Let alone, all control taken from me by a brusk, angry type of Dr. (according to many many of the rate your Dr websites!).  My psychologist and everyone who truly knows me, says that is the very worst thing anyone could do to me. I suffer from PTSD and I’m very afraid of many people. I’ve been abused and assaulted and even sexually molested and I was absolutely NOT going into some unfamiliar place and lose all control!

Well, that was then, on January 2, 2015. Even though the pain Dr. wont see me yet, or have anything to do with me until or unless I’m down to a very low amount of medications for pain. I have done it myself and have tapered off of the meds all by myself. In the past I have had a stroke and a heart attack. I have a pacemaker and I have Long QT and A-fib. I have several, awful,terribly painful illnesses but I still am doing it myself!  My “stand in” GP, who sort of “took over” when the other guy got in trouble and left; and who is not happy that he got “stuck” with me as his patient, said that he “got stuck with a mess when Dr Bullach left him with all of these pain patients that the Dr. just kept giving meds to. How could a doctor do this without caring about “US” as real people? Why would he do this to me? I want to live a good life! I’m a mother, wife & grandma and I have a lot to live for. I have a loving and wonderful husband. I’ve not ever done anything illegal or immoral. I’ve never hurt anyone on purpose and I was always so afraid of dishonoring both God and my own father /parents; therefore I just was always a “good girl”. I stayed and grew into a “good woman/person”. I never even took an Aspirin for pain before that car accident, when I would get headaches in the past!  Would he have done this to his wife or his sister? I just will never understand and I truly feel so sad and betrayed by him.

I have been to the Neuro Cardiologist who said that while I was there for my appointment in January, I was diapheretic *(sweaty from tapering the medications), and my heart was in Atrial fibrillation.  Luckily I have a pacemaker. The Atrial fib is just annoying. I’m being paced with a dual chamber pacemaker. I have a cardiac monitor next to my bed which is watching my HR and BP  24/7/365. It’s connected to my pacemaker via some kind of air waves, making the A-fib a bit more safe.  I’m also on Coumadin, which  helps with the blood clots that Atrial fibrillation can cause. I am keeping track of my tapering and I’m doing this all by myself. My husband is awesome and he’s there for me. He’s helping me by reminding & writing it down with me. I will show everyone that I am strong and that I can do this.  If you are not an addict…if you are only taking what is prescribed by a legitimate Dr. and you are a good, person…then why not be able to take what helps you the most and gives you some semblance of a life? Why treat someone like that as though they are a “common criminal”??.  I only went to one Dr. for all of my medication. I’ve only gone to one pharmacy for the past 26 years! and I asked for the past 3 years, for help in reducing the amount I was taking. I am now down to 1/3 of what I had been taking and I will find someone to help me from now on. I will need something for pain for the rest of my life. I have REAL pain illnesses and real diagnosis’.

The above is just about me and my own story. Maybe some of you have been through it? Maybe you know of someone who has a real chronic pain illness? I’ve done some research online, if I refer directly to something specific that I’ve read, I will tell you where I found it….otherwise it is just general research and my opinion mixed together with my own experiences. If I can help just one person who is suffering, then I won’t be suffering in vain. It appears that Opioids can be a safe and good treatment for some people with non malignant chronic pain. From reading about research I’ve found that there are risks and benefits to the use of Opioids for chronic non malignant pain. The potential risks could be abuse and awful side effects. These can be tolerated and/or managed at least. I think if you have tried all of the things like I have tried, including trigger point injections, epidurals and nerve blocks, TENS, biofeedback, and you just get minimal improvement and only for a little while; then maybe it’s worth a try to be considered for long acting Opioids. I also have heard that if you have nerve pain and you are unable to take antidepressants or anticonvulsants, then Opioids are worth thinking about for these patients. They usually recommend that when someone is given these meds, they should be willing to start out with low doses and start out very slowly.  Hopefully their pain will be relieved if they can tolerate the side effects. People like me, who suffer from multiple chronic pain issues and horribly nerve pain illnesses, should be able to have access to any kind of treatment that has any possibility of improving their symptoms.

About 3 years ago, I started telling my GP that I wanted to reduce the dosage of the pain medications I’ve been taking since 2005. It seemed to me that no medication should be continually taken without having full benefits. I asked many times and each time he would tell me that I didn’t want to “end up on the couch in my living room again in horrible pain; or be in the hospital bed again, like I’d been the first 3 years following the MVA. He was the Dr. and I was the patient so I relented and just listened to him and trusted him. A person who is “addicted” psychologically does not ask to have their pain meds reduced because they are afraid of feeling “married” to it. I didn’t ever like that feeling of having to take something or else I would get sick or sicker! That frightens me and tapering the meds, is the best and safest way for ME to do it. I don’t suggest it for anyone else. You need to check with your own Dr’s and do what they tell you to do. But since the Dr. who knew me very well, turned out to be a bad man who betrayed me and lied to me….well…now I’m back to not trusting anyone again! I know that I do not “crave” the medication in my mind. Psychological dependance is confused quite often  with serious substance abuse and the literature is quite confusing. The Diagnostic and statistical manual, edition IV, (DSM-IV) defines substance dependance as a more serious form of substance abuse. This more serious kind of substance use is characterized by tolerance, withdrawal, overuse, craving, inability to cut down, and excessive preoccupation with respect to obtaining the substance. But substance abuse is characterized in the DSM-IV by use leading to failure to fulfill roles/responsibilities, use in hazardous situations, legal problems resulting from use and use despite negative consequences.  Other studies of chronic long term opioid therapy found that all patients who developed problems with opioid use had a “PRIOR HISTORY OF SUBSTANCE ABUSE”! (hence…NOT ME!)..

There is a lack of any true quantity of research regarding the data for long term opioid use. Many Dr’s prescribe opiates for their chronic non malignant pain patients. Mostly because the alternative treatments for long term management of pain most often fail!! From my readings and research lately, I have found that the opiates usually work for awhile but not always so great for long term use. Sometimes they seem to work in long term situations but I guess there needs to be more evidence and research on that idea. As for me, I feel like it worked for my pain, since I have so many places with nerve pain and so many issues with long term pain. I think it should’ve been reduced a long time ago, because I feel a difference already. I’ve tapered down to 1/3 already in 3 weeks and now when I take the meds, I can actually feel it working after just a few moments; the break through meds. Before I started tapering, it seemed as though I had a constant ongoing “everywhere” pain that felt firey. I just continued my prescribed regimen because that is what I was told to do and each time I asked to stop and /or reduce the amount or try something else, I was pretty much told to “shut up”. I wish Michigan, the state in which I live, could adapt the state of Washington’s patient assessment and care guidelines for the use of opioids for chronic non-malignant pain. You can find this at: http://www.agencymeddirectorswa.gov/Files/OpioidGdline.pdf.  In short, it explains how It includes limiting the dose and amount prescribed, using urine testing for illicit drug use and treatment compliance and asking about alchohol, tobacco and drug use history prior to starting any opioid treatments.

Everything I’ve learned and from my own experience tells me that there is a low risk of addiction in naive chronic pain patients. Someone like me who has never smoked anything nor been a drinker of alcohol, has a very low risk of addiction. I think it is downright hurtful and abusive in certain ways, to keep medication that can help someone’s pain, away from them. What about Dr’s who withhold opiate anelgesics? The problem again is that we just don’t know how long they are effective? In (Kalso et al, 2004)  it was proven that opiate analgesics  effectiveness can be sustained for up to 8 weeks. The problem is that I don’t find any studies that prove their effectiveness after the 8 weeks time period is finished. Also it was shown with lab animals that dependance and pain can possibly get worse with long term use of opioid analgesics. Another issue is tolerance, though this hasn’t been shown in a clinical setting. Increasing dosage to maintain pain control is very common. Many animals in studies do show tolerance (e.g. see Chan et al, 2007).

Sometimes something called “hyperalgesia”  can develop when long term use of opioids happens. This really can mess up and complicate things for the patient and the Dr as well. This was proven  and there is evidence suggesting that this may happen in pain patients on daily opiate therapy (Cohen et al, 2008).  Opiate drug addicts and true pain patients are very separate sets of people. I never touched drugs or alcohol and I’ve always striven to be a person “on the straight and narrow”. I’ve never had any trouble with addiction and I was tested during my time as a patient at the pain management clinic. I was tested by their Psychologist and Psychiatrist.  Their tests proved exactly the same as what I had always known to be true; that I do not have an addictive personality.  In the clinical studies referred to above proved also that opiate addiction due to appropriate medical management of pain is rare! Doctors have a hard time because they feel that it’s difficult to know who is faking pain just to get a prescription. However, the person who is lying to get the meds is already an addict, therefore the Dr is not creating one!

As I mentioned towards the beginning of my post today, more research is needed to decide which pain patients would benefit from treatment with Opiods.  I feel that anyone who is tested and proven to not have an “addictive personality” and who also has proven to be a true chronic, non malignant pain patient; with real HIGH pain health issues/conditions/diseases should be given a chance. I believe also if a patient is asking their Dr. to reduce their opioids because they are willing to try less, then the Dr. should listen to them. Maybe they will go through some tapering withdrawals, but nothing intolerable hopefully. In my case its not been fun but now I’m at the last third of the tapering process. I CAN do this and when I’m finished then I hope to find some respectable, reputable pain management specialist who will welcome me to their practice and help me stay on a maintenance dose. I’ve already notice and noted that I can now feel my “real” pain in the places where there are real problems. When I take a breakthrough medication, I can now truly feel the pain lessen; where before when I was over medicated, I felt a constant burning, nagging 6-7 out of 10 on the pain scale pretty much constantly. I was afraid to NOT take what my Dr. prescribed, thinking that maybe it would worsen to a 9 out of 10, which I didn’t want to tolerate. I can now feel as I’m tapering down on my own pain medications, that when I “over do” my activities a bit, then my pain goes up. When I’m laying “low”, the pain seems to be held at bay a bit.  This has always been true but when I was on higher dosage and over medicated by my Dr., I felt a constant, more steady nagging “all over” pain. I can feel a distinct difference in my pain now.  I know that I didn’t and don’t have hyperalgesia, because my dosage stopped going up 5 years ago but my pain did not increase until my RSD/CRPS II, spread to “systemic” in 2013, and I acquired Lymph edema in my left arm and pain/swelling in my left chest area as well.  My pain was semi controlled and I could do a little bit more on a good day just as I could do a little bit less or nothing much, on a bad day. But I still kept wanting to lower my dosage.

This has turned into a mess for me and for my life. I’m afraid that I’m going to be in horrible pain for the rest of my life? Please…anyone with any ideas (**other than “detox” for a me, a person with no history of abuse of any kind) on where I can go? What I can do? Please leave kind comments or email me if you like…thank you for reading my long post today. I hope I’ve helped someone today!

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Individuality In Pain….


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Hello Luvs,

  We each feel like our own pain is the worst and that what we are going thru is the hardest and most devastating. In a way, this is partially true. That is because when it is” YOUR pain” then it ISYOUR” WORST, do you know what I’m trying to say?  What I mean is that everything can be challenging when you feel like your own story is the only one that’s difficult like this.  A friend of mine who is in my international  buddies/bloggers group *( ladies trying to reach out via blogging, to help those of us  in pain), she said this and I asked her if I could quote her here in my blog; she approved :
“Consider this idea from Brian Greene who writes on string theory in clear English : He points out that, in an infinite universe, each of us is at the center”. Exactly, my point and what I’m trying to convey here, today.   For example, one person may feel that whatever they are going through with chronic pain is the worst pain they’ve experienced in life…ever!, The patient may feel this way due to the possible negative outcome of certain treatments or the lack of treatment and/or empathy/ understanding. One person could feel that their situation is the very bottom of the “pit”. The very “fires of Hell” very well may be his/her situation. The outcome could be a “loss” of  the use of his legs;  to him this is the worst thing that he could imagine.  For another pain patient, or RSD/CRPS sufferer, she may be afraid and feel that her suffering is the hardest that anyone can imagine. She may scared because she is so young with her whole life ahead.  For her this disease is taking so much;it is a thief of sorts!  She could lose so many possibilities in life. Maybe she has indeed lost so much already? What about the younger ones who’ve never been able to experience the love or the dream of being a mother and holding that baby for the first time? Maybe their dream is something different and they’ll not ever get to do the things that I got to do prior to my pain? There is much to lose at each and every stage, when your life gets harder  and then even harder to find things that make you smile again 

   As for me, I’ve lost so much… and 2002-thru now has been a bit more than very difficult. I mean how many people have : lost their mother, their whole family and even their 18 yr old daughter; after raising her almost solely as a single mother? Then later, missed her wedding, and never even knew about having a  granddaughter for a very long time; without ever meeting her? How many people have at the same time, suffered from:  a CVA(stroke), PTSD from a history of abuse, POTS/Dysautonomia/NCS, a heart attack, TBI w/ 3 yrs of PT,OT & TBI rehab; all while enduring 12 surgeries following a terrible car accident?? Also at the same time, still suffering an added degenerative disc disease,A trial fib, 2 pacemakers, pectoral muscles totally needing to be rebuilt and R.A?  All of that,along with “full body RSD/CRPSII”??  What if their RSD/CRPS is in their mouth, eyes, feet, legs, back, neck, knees and even into the chest wall and heart muscle?? Suppose this person also has nerve damage to ears, eyes, legs, feet, back, shoulders & hands? What if they have lost vision and obtained 2 hearing aids as well?   Have you guessed yet, that this person is me? I went from leg braces to wheelchair for anything more than 10 minutes walking now.  I have a motorized scooter  that I cannot use anymore because my shoulders hurt horribly and I suffer from Long Thoracic nerve damage and have other Neurological damage/pain too. I  have RA now and cannot take the immuno suppressant meds due to my immune deficiency disease called “Hypogammaglobulinemia”.  Oh yes, and I have something called  “Long QT syndrome”, an elongated QT line in my EKG, that gives no symptoms but is silent in that it only causes “sudden cardiac death”!  My heart also suffers from  MVP, Pulmonary valve hypertension, and tricuspid valve prolapse as well. I suffer every day from the TBI and the horrible forgetfulness and memory issues.  Not soley “CRPS memory fog”, but deeper memory issues which people don’t understand unless they have true Cerebullar damage to their brain because a man ran through a red light one day while fighting with his wife. Then there is the CKDII and Asthma….. just so many health issues that are  too many to mention here.

   After my heart surgery this past February, 2013; I found out that my RSD/CRPS  has traveled to my heart as well as my whole left chest area. I have so much pain in my neck, my knees, lower back, hands, feet, arms, legs etc, from several of these issues. At times, I’m afraid, I’m sad and I’m lonely. But I know that this is only “MY” worst, not any of yours; not anyone elses.  We all have our own certain issues that are specific to each of us.  We are all going thru each of our own private” HELL”.

  I’m so sorry for each of you in your own separate situations…I cannot take the pain “journey” for you or go thru it with you in a personal way. But I can be your good friend, walk with you, next to you; next to your heart. I can love you and when you’re afraid;  I can talk to you and virtually hug you and love you.  We all separately need to know that we EACH feel like we are at our “worst” at different times. It depends, but every person has real fears and real pain.. Our own worst is still something we own as our personal “worst” experience, just as we experience our own personal best situations.  I hope you all understand what i mean. I have recently read a story of poor woman in terrible pain with great fear.  I do understood her fear (to a point) and her pain (only from as far as I can draw from my own experiences). Then I saw read about another, younger woman in the same kind of horrible pain.  Both of their personal deep fears and pain came through. The younger one feels that she has so much to lose as she hasn’t even started her life yet.  Some of us already have had our children and we’ve had real jobs for a while and may have even been through some good &/ or exciting adventures prior to becoming a Chronic Pain patient. Maybe we’ve done some fun things in our lives or accomplished a goal?  Some of the younger ones in pain, have not gotten to do any of those things, not yet, anyway.  What I see through my advocacy with pain, Invisible Illnesses and RSD/CRPS;  is so much love and compassion. Sometimes it is dampened and even overidden by our real fears and the feeling that we are “the worse off”. We each may feel that our pain is  “the worst”…our own personal worst. When I think about it this way, I realize what we are all feeling and I can empathize better with others in pain. I know that they also share these same ideas and solitude in pain. I just so badly wish i could just fix everyone. I love you all so much.. We will not give up, we will not give in and we will not stop trying to fight for a life that everyone deserves.

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From The Mouth of A Fur Baby


Hello all,
Hey to all of my furriends here on Catster…sorry I’ve not been around so much lately. Mommy is still not doing so well since February when she had the heart surgery…she’s just tired alot and not feeling so great. She’s a good mommy and she tries hard to be everything I need and want …but I just want to be me with my own personality and my own quirks. When mommy and daddy got me they actually got me because their daughter who is 25 has her own apartment and another kitty named “Sutton”. They all love Sutton, she is “fixed” and she is a good kitty and mommy’s daughter thought that she’d get another kitty (me) to keep Sutton company . But when I went there after the foster home, I didnt’ like it so much. I was stuck in the bathroom for a few days and I felt lonely and worried about what was going on for me in life. I was let out of the bathroom for times and then Sutton would be put in the laundry room for awhile while I sniffed out the place and played awhile…then we went back to our own spaces again…just until we could get used to each other. But Sut-Sut never got used to me and started worrying , not grooming, not eating and whenever we got put together to try and be introduced; we both got upset and started clawing at eachother and hissing…
We did not like each other and it just was not gonna work and mommy’s daughter was going to have to take me back to my foster mom’s home. But my mommy intervened and she told her daughter to bring me to her house and they would take me as they fur baby and be my family. I was really cute and I didnt want to be alone in a room downstairs that first night and I jumped up the basement stairs and over the 1/2 door and into the living room! I made a big sound and they wondered what happened!! I made them so surprised and they were laughing so hard and I was instantly allowed upstairs with them and trusted.
OK…so you all know my trials and stories and eveything we’ve been through together, right? You know how my mommy used to say that she had hoped that I would be “cuddly” and everyone said to give me time? Mommy had hoped for company and love and companionship. She is in pain all of the time with a nerve disease and doesn’t feel too good and she just wanted something to love and be loved. (*On a side note mommy has an abusive family and she has to stay away from them to be safe…she also lost her oldest daughter 9 yrs ago )…. She feels like she could use some unconditional love like the love only fur babies can give…but not me…so far I’m not capable of this. Mommy knows that kitties are sometimes loners or we want things our own way….You know my mommy loves me and you can see by all the pictures she takes of me that I’m so important in their lives. I’m so smart and cute and funny…but mommy is sad because I never want anything except to sleep and play (playing is harder for her but she’s a good sport and still plays with me a lot). I’m funny to watch but I’m not any company really. You see….Mommy & Daddy.. they both are allergic and think that having 2 cats would be “pushing it. Mommy and daddy’s allergies are in check just by taking a pill daily so thats good and with me, they are doing OK with it and that is wonderful. But two kitty’s might be pushing it a bit much and mommy’s has asthma as well (which is also doing good at the moment).
Mommy keeps saying that in time things will be better, that I’ll get used to everything, that I’ll be better, less skittish etc. Daddys starting to get upset because mommy is sad quite often about the whole thing. Daddy keeps saying that they should let the foster mommy come back and bring me to her house because she said I could come back to her house any time forever. Mommy loves me so much and daddy does as well, but the only thing that they do is clean out my litter box and feed me and play with me. I won’t let mommy (or anyone) hold me, I won’t sit with her, I won’t sit next to her, I won’t sleep with her, she cannot hold me! I stay in one room of the house most of the time and they are always in the TV room. I used to sleep with mommy but haven’t in about a month and now I sleep up on the mantle over the fireplace or I also sleep in the rocking chair in the room upstairs, the spare room. You see, right now its Sat. night…daddy and mommy are watching TV and playing on their Ipads…I’m upstairs by myself in the computer room in a chair. I used to greet them in the morning if there was a night that went by and I didnt want to sleep next to mommy. I would at least be head butting and meowing and happy to see them and get them up. Now I just keep going backwards 5 steps and forward one step!!
I won’t drink water from my bowl…not any bowl…only from the faucet….I want mommy to pet me while i eat or sometimes i wont eat…the only thing that I do that shows any kind of affection whatsoever, is sometimes I’ ll fall down onto my side like “plop” and want to be petted…but only for a few moments or then I start swiping my claws at them. I don’t get excited to see them or even get up off of my perch when either of them come home….Mommy’s friends who are in a support group for pain patients, they have kitties and their kitties lay down in the bed with them for the most part when they don’t feel good throughout the day. I don’t care if mommy doesn’t feel good and I stay in another room ….
Mommy and daddy are so sad …especially mommy. She /they know that animals are not “disposable” creatures that can be “traded” as the cat behaviorist has suggested when mommy talked to one at the humane society where I used to live. She said that if mommy isn’t happy and it’s been so long, about 8 /9 months now and I’m just not that “into them”..that they should take me back to my foster mommy who doesn’t mind taking me back at all! She told them that they could for sure find mommy a loveable lap cat that would possibly fit in at this house and with this family since I don’t really seem to do anything here except keep to myself and I like it that way. Mommy is afraid to hurt my feelings or afraid to do anything except just keep me here with them, with her. She said they should try a dog or another cat and just let me be who I am and leave it at that…but daddy says that thats not an option…..because of his allergies being worse, he only wants one animal and he has to do the laundry, housework, and lawn work and everything pretty much …already…Because mommy has several health issues its alot on his shoulders. He is a full time teacher and has been for 36 years as well….it’s just hard and they know they could do it and welcome it and not mind at all…but they just want me to give some kind of sign of love and affection. I mean, I hate seeing mommy unhappy because of me….she is sad quite often and she has enough to be sad about daddy says, without me being a part of it. I was supposed to be part of the family and their lives and love and be loved…it’s hard because I’m not like that and I’ve been here 9 mos almost.
Lastly, you know…mommy and daddy had they picked out their own family fur baby, they’d have chosen one with a history of being loving and a lap cat and such…but their daughter brought me home and that didnt’ work out with her kitty and me. We didnt like each other at all. Remember, she was going to take me right back after a week, to the foster mommy…but my mommy now didnt want that to happen and she said they would try to take me and see how it goes….it’s been all this time and I’m getting more and more apart from them/her and instead of closer…..any suggestions will be so hoped for… but mommy cannot handle anymore hurtfulness because there are so many abusers in her life that she’s trying hard to keep at bay…thank you all for being warm, caring and understanding…..love, Luna …purrrssss20130922-002207.jpg20130922-002224.jpg