Narcissism, The New Medical Specialty?


Hello Luvs,

Usually I want to write about something that will be helpful for you all. Something to help inform or teach or tell you about. This time at first, I was thinking that this story was just a “whine” session. But I truly believe that I am discussing something with you that hopefully will “teach” you to “RUN” from Dr’s like this, just like I am doing! Of course it’s always up to you and your choice, but this time it is up to me and it is my choice to get the hell away from this GI Dr. and never go back again. Do not “Pass GO”….”do not look back”.

Since this past Summer when I stopped taking the Fentanyl Lollipops for my CRPS and several Chronic Pain Illnesses, I’ve had lower abdominal issues. It’s gotten progressively worse over time and now in the past month or so, I’ve lost about 8 -10 pounds. It is because when I do eat a regular”normal” sized meal; I get really sick. I start to sweat and have burning in my lower abdominal area. Then I feel very nauseous and get diarrhea and every once in awhile I also vomit (only about 10 % of the time). Since I have systemic CRPS, (which means that it is “full body” and inside of my body, they believe) I thought it might be that and the fact that I have Autonomic Neuropathy. I let it go for awhile and finally I made an appointment with my GI Dr.

I’ve only known this GI Dr. since my mother went to him. She died of colon cancer in 2002. Her case went on much too long before she went to get help.  But he seemed like a “funny” kind of guy and nice enough. I need to get colonoscopies every 5 years, so why not just go to someone that a family member knew and got along good enough with?  I have had either 2 or 3 colonoscopies now.  Either way I have only seen him a couple of times and in the GI procedure setting. This time I needed a Dr. to listen to my complaints and give me an idea on what to do. It’s to a point now that I am unable to eat a full meal without getting sick. I’ve lost about 10 lbs and I avoid eating as much as possible unless it’s tiny increments because I hate feeling that way. It’s even worse if you are not at home and at a restaurant.

I went to visit Dr. “M. D.”this past Monday and he was one of the most rude and “God Syndrome” type Dr’s that I’ve met on my long pain voyage.  Now I say “one of” because there have been quite a few  nasty, mean, flippant and/or “God Syndrome”people in the medical profession along my “post car accident injuries, surgeries and pain” journey. This was one of the top 3, I’m guessing. Just for a little “sidebar”: #1 was while I was going through Traumatic Brain Injury Rehabilitation for 3 years. I’d been to several shoulder physicians asking for help with a “nerve zing” that went down my left arm for the year following the accident. This one Dr.from Beaumont Hospital, a Dr. Roland Brandt, said to me “What part of “I can’t fix it for you, don’t you understand? Is it the brain injury?”. I ran out of there as fast as I could with my walker and my transportation driver, while the ladies working in the office seemed flabbergasted that he could’ve said something so horrible to someone in such pain and bad shape as I was in!  As for #2: I was at an Immunologist appt. and had been sent there because I have “Combined Immune Deficiency Disease”. He never took me into an exam room but we went straight to his office. My husband and I sat in these huge chairs that swallowed us up. While Dr. Tulin-Silver looked at me and said “So what is RDS”? My husband and I looked at each other and my husband knew exactly what I needed. We got up and left immediately. Ummm….Dr. Tulin-Silver, it’s called “RSD” and now it’s called “CRPS”. It is a #43 on the McGill pain scale and a very very painful nerve disease. The most painful one right up there with cancer and the pain is equal to childbirth and amputation of a digit, according that same pain scale. By the way, I went to another shoulder Dr. and I didn’t give up. The last one I went to, Dr. J. Michaelson, touched my shoulder or arm in a certain way so that I jumped! He knew exactly what it was. He told me that for that past year I’d had a ruptured biceps tendon, aside from the torn rotator cuffs. It had grown wrong for a year because no one would listen to me. He had to do Open shoulder surgery and drill into my bone. He had to unattach the biceps tendon and reattach it with two screws! That was a painful surgery! He also sent me to Cleveland Clinic for help with my other shoulder. Now that’s a good Dr.!

Let’s get back to my appointment with Dr. “M.D.”,t he GI specialist, this past Monday, February 15, 2016. I told him what was wrong and he first said “Boy you are on a BOATLOAD of MEDS”! He had blinders on and was totally convinced that I was just “stopped up with stool”. He said “constipation causes diarrhea”. Ok, I get that, but the other symptoms with the nausea, sweating and being unable to eat a full meal? Plus the fact that I’m losing weight now because I’m becoming afraid to eat a full meal. It’s gotten worse since I went OFF the Fentanyl Lollipops, this past July 2016.  I’d been on those  for 12 years! I’m on much less medicine now than I was, but he would not listen to me! He made some horrible comments to my husband and to me and I left that office in tears. I had asked for a phone call from him. This is Saturday of the same week and he’s never called me back!

As we were sitting in his office he said to my husband, as he was skimming over the records and notes that I’d brought with me; “Man, OH Man….You got more than you bargained for huh?….I don’t know if  I’d have gone through with marrying her? If I had known ahead of time, I don’t think I would have gone through with it!”  First of all, how does anyone “know ahead of time” anything that is going to happen? Secondly, what about “for better or for worse, in sickness and in health….til death do us part”?   Lastly, I was an innocent passenger of a car that was being driven by my husband and through NO FAULT of his, a man ran through a red light while fighting with his wife. This caused a “T-bone” car accident and I was hurt badly.  Too many injuries and surgeries to list them all here today; and progressively making life more hard while things keep getting worse!   That Dr. then looked at me and said “He still with you ?!” (Now these are not exact word for word accounts, but between my husband and myself, this is the exact idea and very close to what he said to us)….He also looked me in the eye and laughingly, but sickly and seriously said ” …and with all that is wrong and all of those/these medications for all of this time, your Liver is just an innocent bystander in all of this”!

I know can you even believe this guy? I know the pain meds that I need to live with now, because of the multiple injuries from a car accident, 8 surgeries and then getting several pain illnesses including the systemic/full body CRPS and so much more can cause a big strain on the liver. This is why I ask my GP to get the AST and ALT  labs done every 3 months. Hopefully, we would catch anything wrong, coming up very early on and would be able to switch to a different medication or something? It was just an unkind and flippant way to say that to a person sitting there asking for help with a different issue. He was trying to tell me/us that I’m going to die sooner than later, I’m guessing?

The other few times that I’ve had the colonoscopies done by him, he hadn’t seen me in the office and I’m guessing he didn’t really look at my chart or know anything about me? But he did see that I was a pretty thin lady back then and so he gave me a different prep for the procedcure. I told him back then and I told him this time, that I had been abused as a child and my parents had given me “syrup of Ipecac” when I was given any food at someone else’s house. I had to be chased around the kitchen, while I was screaming and crying because I was forced to take a couple of Tablespoons of this nasty “medicine” and then forced to drink several glasses of water. I was put on a shower curtain, on the living room floor with a bucket and sitting on a little wooden rocker, to wait for the explosive vomiting that was to come and get rid of any food that might “make me fat”. He told me that I just had to: stop eating solid food and have clear liquids for 2 days instead of the usual 1 day. I was to take 2 Ducolax pills at 5 pm and 4 more at 9:00 pm the night prior to the procedure! That was all I had to do! He never complained or could not do the test! He never said a word to me about anything except that it was “all good, fine, OK” and then “see you in 5 years!”

I probably weigh 25 more pounds than I did 5 years ago, but I’m more “normal” weight now and I’ve even lost 8-10 lbs in these past few months.  So I tried to remind him  that I could not do the “normal” prep. I would not do well with the “explosive diarrhea” and my atrial fibrillation, pacemaker, history of heart attack and a Stroke/CVA. He said “stroke???”….”You LOOK FINE! I don’t see any deficits?!!” (**There was a cane sitting next to me in my chair. He had not seen me walk and because I wear make up and choose to dress nice, does not make me “FINE”).  I tried to tell him that I had eyes that don’t close when I sleep because of the nerve damage from the injury to the Cerebellum with the TBI and then the stroke caused right side weakness and my right foot has worse “foot drop” than left. The right side of my mouth goes downward especially when I am tired. Also, if you look at some photographs of me, you’ll see that one eye does something different than the other eye as well as my mouth not being the same on both sides of my smile most of the times.  He did not listen, and he told me to “HOP UP onto his table”.  The table for an exam was pretty high and he wanted me to “hop up onto it”. I looked at my husband and of course, being the woman that I’ve always been, I tried to do it. I was unable to get up there and asked for my husbands help and then the Dr. proceeded to lower the table so I could get up on it. Was that some sort of test? Was he trying to see if I could or couldn’t get up on it? Why was he treating me this way? This was not an IME by the insurance company! I was paying him to treat me this way!

So he told me again that he totally thinks that the only thing wrong with me is that I’m totally “plugged up with stool” and I needed an Abdominal X-ray and the colonoscopy. I told him again that I usually don’t have to do the big prep like other people have to do because I’m unable to drink that liquid. I vomit and gag while trying to drink it. So he instead, gave me a “OMNI-PREP” of 32 pills to take “4 every 15 minutes” from 5 -9pm the night prior to the test. But ALSO, to “not eat anything but clear liquids for 2 days and then the first night to drink a bottle of citrus magnesium  in the evening with 7 up”. This prep is more than my 180 lb husband has to do??? I started crying and he left. I asked the ladies at the front office to please have him call me about the prep. Why was this time different from the others? They said he would call. This is Saturday and that was last Monday, he never called.

I had the X-ray done and I never heard from him so I went to pick up the report results myself. We took them to my GP appointment. So it says that I have “moderate stool” in my colon, which is perfectly normal. I’m not “plugged up” and I have diarrhea, so I’m surprised there was even a “moderate” amount. It also says that I have some Osseous calcifications in my pelvis called “Phleboliths”. They are supposedly not clinically significant but can cause or come from chronic constipation. I’ve had that problem for a long time since being on those older meds for pain. But now that I’m on 1/2 the amount I was on before this past July, it’s turned around  and turned into diarrhea and nausea after eating, plus a burining feeling. My G.P. sent me to a different GI Dr. and I have an appointment on March 30th. I will never go back to Dr. “M. D.” again. My husband says not to write or call anyone because it won’t make a difference. I’d like to call and tell someone, but if it won’t matter, I guess it won’t change anything. I just need to go elsewhere.

So he was 100% wrong and I’m not “plugged up” to the eyeballs with stool and I definitely don’t need a 2 day prep taking a whole bottle of citrus magnesium the first night and then 32 pills the next night? That’s totally ridiculous and my G.P. even said that was “over kill”. I called my Neuro-Cardiologist and the Coumadin Clinic….because the nurses told me to “stop taking my Coumadin also”! NO….NO…No…Never stop taking your Coumadin (blood thinner for history of stroke and for atrial fibrillation, an arrythmia in my heart) unless or until your heart Dr. tells you to do so! The nurses at the Coumadin Clinic said they were going to talk to my Neuro-cardiologist and tell him about this and they were appalled by this “overkill prep” on someone in the pain that I am in and with the illnesses that I have! I honestly believe that this prep could have hurt me or killed me. I also have a pacemaker and I’m just still honestly in shock to be treated this way because once again “I LOOK FINE”!

Many of the illnesses that I have are called “Invisible Diseases” or “Invisible Disablilities”. I have even done a commercial for the Invisible Disablilites Association’s, You Tube Channel. It is called “Invisible No More”. I am going to post my Video, the one that I did for them a couple of years ago in 2013. But I wanted to blog about this experience because if this should happen to you…..RUN….DO NOT PASS GO…..DO NOT COLLECT $200.00! Find another Dr. and do not go back to someone who treats a person this way.  I did not post his name because I did not want to do that to anyone except the Dr’s that I’d seen several years ago and so I decided to post their names. This guy, is in my hospital system and I don’t want to run into him someday while inpatient and feeling “helpless”; so I chose not to print his name. Thank you so much for coming here to read my blog and I hope that I can help someone with some of the things that I write about.



This is My Fight …….


This post stems from some horrible comments that were made on one of my videos on YOU TUBE. MY one YOU TUBE channel is mostly dedicated to information and helping others struggling with chronic pain and /or Invisible Diseases or disabilities. I am not writing this post to “brag” about what I do, because it’s not all for unselfish reasons. It also helps me continue to live on and to want to continue to try and move on beyond the illnesses and the pain that I live with every single day. I was thinking about just deleting the mean comments that someone who says their name is “Jose'”, wrote to me. I thought about not responding and never even saying anything back to this person or these people posing as someone named “Jose'”. I am going to copy and paste the comments here; that were put after my very short video.  The video is one that I made after only day #1 going through withdrawals from being on the Fentanyl lollipops for 12 years and 20 + per day. It was prescribed by my Dr’ of 14 yrs or so. It was Ok’d by the insurance companies and the pharmacy never said a word. I was and am a “lay” person and I did what I was told. I had been on 2 x 100’s strength Fentanyl patches at a time and changed them every 48 hours. At the same time I was on those lollipops. I was put on them at first because every pain medication “ate up my stomach”. Nothing I took by mouth worked because it made me sick to my stomach or burned badly.  So I was put on the lollipops and the patch. One day when I fell and my pain was made so much worse, my GP; the M.D. that had me on those dosages, told me to “go ahead and start wearing 2 of the 100 strength patches”. I did what I was told just as I’ve done my whole life. That is why I’ve gone through so much abuse and trauma because of trying to be the “good girl” and do whatever someone who I thought was a person in “power” or who had “power over me “(so I thought) told me to do.

The reason that I posted this Artistic Sign Language cover song by Rachel Platten, called “Fight Song”; is to show how I am feeling much better now than I was during that “withdrawals day #1 video”. I only did that withdrawal video to show others what it might be like for them to go through withdrawals and what it might feel like. I then posted my new YOU TUBE page called ASLSuzyQ because that is where I put my ASL cover songs. I lost my career due to PTSD, pain, nerve hearing loss and more pain, 8 surgeries, a TBI (Traumatic Brain Injury), disabling pain and illnesses. But now I do little tiny bits of ASL to songs because it cheers me up and I hope it cheers up others as well.  I can only do it for a little while and the pain afterwards is debilitating. I cannot even hear the song with the music like I could in the past as I acquired 2 hearing aids due to nerve hearing loss.

I am now going to show you and copy and paste exactly what this/these person(s) wrote to me . Then following those comments, I will post my response to the comments. I’m not sure if this person is really someone named “Jose'” because their “account” in You Tube is not a real account. This person or person may even be some  “bullies” that had popped into my life recently. I’d been abused and in fact I’m used to spotting Narcissist’s and Malignant Narcissistic abusers. Therefore I “popped” them right out of my life as fast as they tried to hurt me and attempted to ruin my long time friendships and my reputation. But my reputation speaks for itself and I don’t have to defend my honor to anyone. I know who I am and what I’ve done. I know what I am doing and hopefully what I will continue to try and do.  I’m a good and kind person. I’m not perfect, but the only one who can judge me is God.  Here is what this person or these persons wrote to me and then afterwards is my response:

SPEAK UP! STOP FEELING SORRY FOR YOURSELF. I’M ON 4-100 PATCHES. You slowly come off them by matching the withdrawl symptoms. Stop and think about it. Some of us have it worse than you. get a grip

-Hello Jose, Im sorry you are such an angry man. It’s too bad that you judge before you know anything at all about me or my life or my background . You know nothing of me or what I’ve been through. Actually I was told by SSDI that I “am the worst case of child abuse/trauma that they’d seen in the past 36 yrs”, that was when i first got on disability in 1998. I also at that time had and still have CKDII now III. I don’t feel sorry for myself, in fact I’m a health advocate /activist. I’m an ambassador for the U.S. Pain association and a Mentor for I run 2 support groups with over 750 people in chronic pain. I’ve done commercial for Invisible diseases association and I’ve been a “chemo-angel” since 2005. I help others and I don’t hurt people, especially other’s in pain, like me. My new pain Dr. who helped me through the withdrawals in July 2015, this Summer, when I made this video, couldn’t believe how many “real” pain illnesses I have and deal with. He and all of my Dr’s that I’ve had for many years, tell me “how proud they are of me” for all I’ve been through and then to be left like that on 2 x 100 fentanyl patches (weighing 120 lbs at 5’5″ tall and 53 yrs old!!) and 20 + fentanyl lollipops daily. I had to go down slowly on my own, which I did. I then got to 2 per day or 3 and then I took zero after the 12th of July this past year. I’ve never had one again in all of 7 months. I’m proud of myself. I didnt ‘have to go anyplace to be “treated” and a kind pain Dr. took me and is proud of me for all that I have and all that I try to do for others. I only made the video to help others to see what it may be like at first and then I did the other video’s such as “stand by you” in ASL by Rachel Platten and many others, since then to show them and everyone that I did it and can do it and am doing it. I don’t feel sorry for myself very often, but sometimes I allow it for a few moments. I have been a survivor of childhood trauma/abuse since I can remember, then 2 marriages- abusive and one to an ex cop who’s not one any longer but not because of me, because he hurt someone after me. I finally found my soul-mate and actually today, Valentines day we are celebrating our 19th anniversary. Only some of my chronic pain illnesses include: full body/systemic CRPS, Polyneuropathy in Collagen Vascular Disease, Autonomic Neuropathy, Prinzmetal angina/coronary spasms, CKDIII, Rheumatoid arthritis, Osteoarthritis, Coronary artery disease, right long thoracic nerve neuropathy, I have Long QT syndrome in my heart, atrial fibrillation and have a pacemaker. I had heart surgery in 2013 and my CRPS went inside of my body at that time. Im on my 2nd pacemaker. I had a heart attack in May 2005 and a CVA or stroke in 2006, along with 2 “mini” strokes since then. I’m on Coumadin/blood thinners for that. I have Arnold Chiari Malformation I and Multiple herniated/bulging discs in my Lower back and neck at C 4/5 and C5/6 and L4/5, S-1….I have SCID or “severe combined immune deficiency disease”, along with Eczema secondary to CRPS, Asthma, nerve hearing loss with 2 hearing aids and I lost the career that I went to College for …I was an INterpreter for the Deaf and now I sign songs and do artistic signing of covers of songs when I’m able. I’ve had 8 surgeries and all of this happened after a car accident in 2002 ,when a man ran a red light while fighting with his wife. I was knocked unconscious and for 30 minutes or so I’m told. I was also in brain injury rehabilitation for 3 yrs outpatient, because I suffered a Traumatic brain injury. Luckily I found the best Dr’s and got leg braces, a wheelchair, walker and motorized scooter and loftstrand crutches to help me along. I use a cane sometimes when that’s all I need; other times I need the wheelchair depending on my pain that day. I didn’t need to explain all of this,but I felt that if someone who actually has “feelings” and “compassion” ever reads this..they will see how mean and uncaring others can be when they are ignorant to the situation and know nothing of the person they call “feeling sorry for herself”. There will always be people worse off than me and than you. There will always be people better off than we two….I already know that my spirit and my heart are much much better off than you. You can be “sicker” than me if that’s what you wish sir. You can “win”….you can have that place if you want it. I don’t want to be the “sicker” one. I want to be the one who survived to help others and work with others to help them to keep on wanting to survive and never give up… Good day.

So that is what they/he/she said to me and this was my response. My husband asked me “why did you bother to write back”? He told me that I should have just denied the comments and not approved them.  But I wanted others to see how people can be so mean, even when you are trying to be helpful and no matter who you are or how “good” you try to be, there will always be someone who will judge you and try to hurt you. The only way they succeed is if you allow that hurt and meanness to get into your heart. It will not penetrate my heart because I want to be a good, kind and thoughtful person. I want to help others and I will continue to do so as long as I possibly can. People like this are one or more of many things:  Mentally ill, abusive, Narcissistic and /or Malignant Narcissistic abusers; or all of the above!! I had to show people that no matter what meanness or hurtfulness comes my way or may come your way; don’t ever give in or give up. I won’t either!
I do have some “protected” posts or “private” posts. For my own safety and due to the abusers in my life still today; I have had to do this. If you wish to read those posts, please email me and I will send you the password. Thank you so much…Im sorry this post was not uplifting but I just wanted to show that no matter how hard someone tries to be good and kind and even try to help others, there are always bullies and Malignant Narcissist’s out there ready to “Pounce” and they’ll try to hurt you.  Just don’t let them hurt you or your spirit. Know yourself and what is in your heart and soul.
Well, I was going to copy and Paste the “apology” that I got from this person. I went back to go and do that so you could see that by responding in an assertive way and making the person responsible for what they did, said….sometimes people will rethink what they’ve said or done. In this case, Jose’ decided to delete his message, which in turn deleted my response. Therefore, it is all as it never happened now on YOU TUBE! But it is here, in my blog and I hope that I’ve learned something and I pray that others have also learned from this post. Thank you and I pray that you have a low pain day and a good day today and every day…


Living Beyond Your Illness


Hello Luvs,

IF you haven’t read any of my blog before, you won’t know that I always start out my blog with “Hello Luvs”.  I had meant to write this long ago, but time gets away from all of us, so today the phone was on mute and the kitty was lying in her spot with me in the same room and it seemed a good time to write about this.  We can all get down and sad sometimes, even depressed.  I mean, having a chronic illness, or a list of chronic pain illnesses can get pretty monotonous to say the least! If you let yourself get in a “rut”, then you will panic and be sad and “down” and things only get worse from there. You can try to join a support group or make friends that share some of your illnesses. But you really must be careful in that as well. All things are good in moderation, is what someone used to say, right? I cannot for the life of me, remember who said that originally, but I know my mother said it to me many times.  She said “we need water to survive, but even too much water can kill you”. She was right.  Sometimes when we join groups and make friends who have the same or similar issues or illnesses as we have, things can get a bit “strange” at times. It may be a good thing but you just need to be careful as some people try to compare themselves to each other, see who is the sicker one, who is worse or better? Things like that! It is sad but true. The more and more that I work with groups for the past 7 years and with awareness events, projects and people in pain, like myself, I have seem it all.  Sometimes the people do the things they do to make themselves feel better, and that’s not all bad either! It’s great to make yourself feel better by doing something to help others. But when you do it for accolades, applause, gifts, patting yourself on the back or for someone patting you on the back, then it becomes a bad “game” of people hurting people instead of people helping people.

In my life, I first got approved for SSDI in 1998, due to CKDII and PTSD. They had called us the day before my scheduled Dr’s appointment with the SSDI office Dr’s, I’m guessing? They told my husband that they received all of the information from my team of Dr’s. They told him that “she doesn’t need to come tomorrow to see our physicians. She’s been through enough. After reading her history and stories from several of her physicians and Psychologist; we’ve decided that we don’t want to put her through having to tell her story even one more time! She is approved”! I was crying, I was so happy. The reason being, that when I have to go to a new Dr or a “scary” situation (due to the PTSD), I do get stomach aches and diarrhea and even vomiting!  I didn’t want to feel “judged” or ridiculed or afraid again. So that one thing, I did not have to do and I was so greatful for the “gift” of not having to be “sick” through all of the poking, prodding and questions.

As time went on, I ended up getting into a motor vehicle accident, just before I was thinking of trying to return to work maybe even part time? But the MVA just took that notion and threw it out the window!  I will make a very long story, very short. Because this writing is about getting “BEYOND” the illness and pain. I will just say that I suffered and still do suffer from many issues and injuries following that MVA, when a man ran through a red light and not only totaled our car but my body and my brain as well. You might say that my brain “seems great”. I am writing to you and all seems just fine! Not so much! I have suffered since that time from the aftermath of 8 surgeries, screws in my shoulders, both knees damaged, 2 pacemakers, a stroke or CVA and  a heart attack in ’05. I acquired an auto immune disease called “Combined Immune Deficiency Disease”, along with a Neuro-autoimmune disease called “CRPS” (sometimes called “RSD) and also known as “Complex Regional Pain Syndrome”. Mine went systemic or “full body” following my 2nd pacemaker surgery in 2013. The wonderful Neuro-Cardiologist at Univ. of Toledo Med Ctr. tried with all of his might to head off a full body attack of the CRPS inside of me. He did a “internal Bipvucaine surgical wash” and it was because as he went into my body, to replace my pacemaker, he saw that the old one had been wearing a hole right through my pectoral muscle for those past 10 years that it was inside of my chest! So he had to call other Dr’s to come and help him rebuild my Pec muscle first and then he wanted for that not to ever happen again. He tried so hard to stop a full body attack inside of me, from the CRPS. We were hopeful that he could do that as it has worked a few times in the past. But sadly for me, it did not work and I am now with CRPS “systemic and full body”.

After that surgery, which was not my last, I still had to have some jaw surgery, but that did go well. But I could have gotten depressed and given up on life. I don’t have an extended family as far as parents or siblings or Aunts, Uncles, cousins (just a few). It’s pretty much my husband, myself and our cat, Luna! We have 2 grown daughters with their husbands and 2 granddaughters with another on the way in June of 2016.  They are busy and have their own lives to live, but I’m very close to my daughters and so glad of that. Still, because I try so hard to downplay my feelings of being in pain, nobody really “gets it” except those who truly live or haved lived in the same house with me for an extended period of time. It’s hard to explain to friends and family that you are on medication for pain, but that mornings are still bad for me and the pain gets worse with each outing and the more I do. Nobody except someone with daily chronic nerve pain and more, can truly understand. It is OK though because I needed to find a way to help myself and not complain to everyone around me every minute of every day. It makes people tired to be around me if or when I do that. I learned that lesson very early on.

So I became involved in something other than thinking about myself. I became a “chemo angel”, a card angel, special assignment angel and I became a prayer angel. These are all for the same non profit org. I actually volunteer and I get daily emails of who to pray for and then I get a list of who might need a cheer up letter or card, with a small mail-able uplifting item. I get assigned a “buddy” who is going through chemo-therapy. I accept or decline the assignment and then I go from there. If it is a good “fit”, and usually it is; I accept and then I start to send a weekly letter and cheer up mail to them. I send small mail-able items, such as: magnets, book marks, tea bags and such. It is good for me and I enjoy doing it. I have a cat, as I mentioned above, her name is “Luna” but online and for chemo angel kids, she is “Angel Kitty Luna”. The stories for my assignments, which are children, they get stuff from “Angel Kitty Luna”. She writes stories about chasing bugs and jumping up at flies and swiping them with her paws. She tells of how she drinks water from the faucet and sleeps on me, her “momma”. She has exciting adventures and it makes the children smile for a few moments. That makes me happy and it takes my mind off of my own illnesses. I am not allowed to be sad or grumpy or talk about my own problems. I do not ask for nor expect, “thank you’s”. I hear back from some of my “buddy’s” and/or their families, and sometimes I never hear anything…that’s OK too.

I started to dabble in making jewelry one time when we were on an overnight trip with our daughter, who was about 18 at the time. We got some beads and elastic and just made a bracelet. Then I started to look for “awareness” beads online. I started making Awareness jewelry in earrings and bracelets. I would put them up online after I made a website and started to sell them. Then I started some fun other jewelry items as well, such as: Pet jewlery, Swarovski crystal necklace, earrings sets and just a lot of different things. People asked me to make jewelry for their wedding and wedding party. I was so excited to be doing something that I could do sometimes, at my own pace and I took no money except to replenish supplies. The money went to whichever charity the items were for, including the Humane Society.  If it was for a wedding party, then I made it their gift when at all possible.

I got involved in Bible studies when I could, but then I missed so much because they were all in the mornings or later in evenings and I couldn’t do well at either. I started making “groups” for support online and inviting everyone with any pain, or Invisible Illnesses to join. I made the groups “closed” and one is “secret” and one is just “private” and people can choose both or either one to join. I am the only administrator for the groups and it works well for me in that, this way not “too many hands in the pot”.  I don’t tolerate any drama and if I come across a post that is in any way demeaning or hurtful to anyone in any way, I remove it. I have  a couple of “pages” too. Some are ….or actually only one is for people in pain with Invisible Diseases, chronic pain and issues such as these.  The other pages that I have are for ” Angel Kitty Luna”, for helping those who’ve lost hope or who’ve been abused, also for my second love and my old career; that of ASL and Artistic Interpreting. That page is called “I Luv ASL”. I post information sometimes about different things that has to do with Deaf Culture.  Other times I post a song that I might do in ASL. I try to do an Artistic version of a top 40 song or a song to motivate people or make them feel happy.

I have a few very wonderful friends in “real life”, who truly understand or try to, when I’m unable to go someplace that we’d planned on going, for example. I try to go out to dinner once in awhile with my husband and these good friends. We have a really nice time, but then afterwards I’m pretty much exhausted and in pain. Same with putting some quality time into being with my lovely oldest daughter who lives only blocks away. We do something several times per week, but only for an hour to two at most.  Then the rest of the day I’m exhausted and in pain. But it is worth it because  I get to spend time with our granddaughters and daughter. On weekends we try whenever possible to visit our other daughter and son in law, who are due to have a baby girl, Kiera, in June of 2016 maybe once a month or so?

I have been a mentor for since about 2008, after having a mentor from them for a year after my diagnosis. It helped me so much to have someone who understood and could answer my questions and knew what I was going through. Now I try to do it back whenever they need my help. I feel like the Orsini family is my family too. I’ve become an Advocate for those in Pain, chronic pain and with Invisible disabilities. I’ve helped the I.D.A. by doing a feature commercial for them a couple of years ago. I write to try and give people idea and information. I love blogging and helping others. I do try to help other pain org. also at times when they might need me to write something. I have tried to be a health activist by writing for Pain News Network as a guest columnist and I am an avid “tweeter” about CRPS and chronic pain as well.

We can live beyond our pain even though we must live with it. I don’t mean that we should “make light” of it.  We can share experiences with others and have our friends that have pain. I feel we should also get “out of that” at times and have friends and activities not involving Dr.’s and only our “sick friends”. If you don’t feel well you might try music or writing, like I do? There’s always knitting, crocheting and things with your hands if they don’t hurt too much. Some can do Yoga, that’s not a thing I can do. But you see there are Bible studies and mom’s groups and libraries, coffee shops and a whole world of things to try and keep your mind off of your pain. I honestly have full body, systemic CRPS and I have several bad pain diseases such as : Rheumatoid and Osteoarthritis, Arnold Chiari malformation I, Degenerative Disc Disease with multiple herniated and bulging discs in my neck and lumbar spine with L-4/5 radiculopathy. I have Poloyneuropathy in Collagen Vascular Disease and Autonomic Neurapathy along with several heart problems and a pacemaker.  I have right long thoracic nerve injury where an 8″ span of nerve is broken and I have numbness in my hands/feet due to a CVA in 2006. I have Prinzmetal Angina which are Coronary Spasms. It’s alot and I have much pain. But the pain Dr. even told me “I cannot ever take your pain away, but I can try to make you more comfortable”. So that’s what we do. I take medications to help and I get about 2 good hours per day before I start to slide. I am unable to drive more than to just go to the corner store and get milk or eggs or something like that. So I truly know it’s not an easy thing to do.

Just try your very best to get involved in something, anything aside and outside of your pain. Try not to do something where you need a “pat on the back” or you need to “pat yourself on the back”. You don’t need to have a “title” or be a “important” or “special” person in the pain community because you ARE an IMPORTANT and SPECIAL person no matter what! Do something that makes you feel good just for you and believe me, if you can relax even for 10 minutes, it can be TV or music, a book or quiet time with your fur baby or babies. But those 10 minutes when your body and mind are relaxing will do you a world of good in your physical and mental world. Get someone to drive you if you are unable to drive and do something like a small outing even once per month. ..get out of the house if at all possible. These things will cheer you up, I promise! Lastly, find some organization, or a family that could use some kind of help that you are able to do or give?  Like I do the writing letters or even just join a prayer group at a church? Be someone who prays for others, that cannot hurt you? If you don’t have that belief, find something that you believe strongly in and participate in some way?

If we just concentrate on the pain, that is all we will have. If we just concentrate on Facebook, Twitter and/or online groups 100%, we must remember that all of these people that we associate with in the “illness themed groups” are also all fighting their own battles with pain. They can feel vulnerable, in pain and intolerable at times; when they may not mean to be that way at all! Make sure you are getting real and up to date information and double check it for yourself if you know how to use the internet. Help a group or a person in need ….you don’t need money to do that. You can do many things that you probably don’t give yourself enough credit for doing.

Know that I always have all of our lives best interest in my heart an soul and mind. I want only what is good for you and for me. I want to help and the other way to help is to “KEEP HOPE ALIVE” (my favorite slogan that I started using as a Meme and in other ways during CRPS Awareness month in 2013!!). Don’t lose hope and do not lose your temper. If you cannot sleep, that doesn’t help with pain either. Try as best you can to sleep or take a nap during the day if at all possible. Try to Live beyond the pain and use it to work for you and your life instead of against you and your life! Try to find something to make you happy and remember the best way to make yourself happy is by doing something kind for others without asking anything in return. Random acts of kindness are also free and do a lot of good for you and others. Peace to you and know that someone cares!