All For One, None For All


Gosh, to think of all the positive blog stories that I’ve posted. That’s how I met most of you. Through my perseverance and positivity. But lately, I’ve had lots of “downers” & I apologize. I do apologize …but not before another “not so upbeat” post. So remember how I was trying to be there for my dad? He recently was inpatient at hospital & he had to have the “Rapid response” revive him twice at age 88. I went even though I was told by him & my brothers, not to come. Well then, I was given times that I was supposed to go because that would help everyone else. Because I’m a high impact pain patient, I’m up at night. That doesn’t mean I’m out at night doing stuff. That means, I’m at home in my PJ’s unable to sleep due to pain issues. But the entire 12 days before my major surgery, I spent with my dad and going when I was told to go and even when I wasn’t.

When he got put on dialysis, Craig & I showed up. I was told by my brother that it would be “all day or at minimum 4 hours so we couldn’t see him” (& supposedly they couldn’t see him either). So I called their bluff & said “well we will just wait. We can wait 4 hours here with you!” Ahhh but then he says 5 minutes later “we can go in after the dialysis nurse gets things started actually in about 1/2 hour”. Hmmmmmm??? A far cry from 4 hours or more. We stayed & said nothing. I even went to see my dad the night prior to the day before my surgery.

I was texted the day before my major surgery, by my brother who asked if I was coming up in the evening (to relieve him, I’m sure bcz he was leaving)… or “when was I coming?” That day I said I couldn’t come because I had to do some stuff for myself before the surgery. I’ve not heard from anyone since then.

I’ve texted my dad daily. But not once has it been about me. Never has been…never will be. But my brother called Craig once & said he was on his way to see my dad… told Craig about my dad & asked about my surgery for a moment in the end.

(Side story:**My dad told me that my middle brother (who I don’t see, for many good reasons & haven’t for almost 17 years)told him that he “doesn’t & hasn’t prayed for me for all of these years but he will pray for my surgery “for my dads sake”… WTH?? He pretends to be a priest! He buys all of the stuff online & even bought a certificate that says he’s a “bishop”… he has a fake chapel that when you go to Google Earth, it sends you to his house!! If you go to his website you see that people send him money as “donating to his church”! There aren’t even any real services held. One lady online wrote on his website, “me thinks he’s a fake”! Well me thinks so too! I stay far away from him and I have always and since I took several PPO’s out against him. (The Domestic Violence Shelter helped me!)

My dad is at cardiac rehab now & he’s actually getting better. But it really hurts that my family has not cared about me & they continue to say “we’re always here for you!” My dad continues this fairy tale “that if ever I needed any of them, they’d be there for me “even with our differences”!

Well, I’ll tell you…. they’ve not been there & haven’t been since I was a child. Once when I called my big brother, after I was in a catastrophic car accident. I suffered a TBI & his phone number was the only one in my head. I even hit myself in the face by accident with the telephone, in trying to call him because I felt in pain & afraid. He answered the phone with “Oh…you need someone ?…”. CLICK & the phone went dead! He hung up on me! I suffered 3 years of brain injury rehab. I’ve gone through 10 surgeries now! They tried to turn my daughters against me when they were teenagers also! They were not ever, nor have they been there for me at all! They’ve only tried to hurt me more & “kick me when I was down”. Luckily, the love, protection and bond that my daughters, my husband and I had/have, pulled us through! We are as close or closer than ever! They are older now, with families of their own. They look back & now understand & see what truly happened. Having children of their own, they can’t fathom what happened to me! They don’t really see or talk to any of my biological family. But when my dad was dying, I got them to come & to make a FaceTime call.

Now that my Dads in cardiac rehab, he /they are back to their same horrible treatment of me. They’d still throw me face down in a mud puddle, in the middle of a busy street during rush hour; if it would give them my daughters and grandchildren.

Another thing that I can’t fathom is the way my dad & brothers have treated my dads girlfriend/live in partner of 12 years. She treated me absolutely abhorrently when I introduced myself to her the first time, years ago. Again, another “victim” who only knew one side of their story.

But guess who was nice to her? Guess who was concerned about her feelings when my dad & brothers refused her entrance to see my dad while he was inpatient & dying. She texted me until the wee hours of the mornings. I was kind to her & told her she should go visit him anyways. She is my dads “creature” too, unfortunately. She stayed away & barely got any information from my brother. She asked me to help her to get a pill reminder because my dad did all of that for her. He infantilized her as he’s tried to do to me. I cared about her & promised her that no matter what happened; Craig & I would visit her & try to be there for her as much as possible. Guess who I never heard from before or after my recent major surgery?? I’ve not heard from any of them! I’ve sent texts for 3 days in a row & never have received a response from my dad. Yet my daughter texted him while she was visiting us with our granddaughters yesterday. He texted her back right away & asked if he could call her? She said she was at my house & he could call anytime.

I had to fight in order to be included as one of my fathers 3 adult children. They said I was “too frail & too weak to come visit because I might cry & hence, make my dad cry”! Oh My Gosh! I’m stronger than any of them put together! I’ve been through a hundred times more pain and abuse than any of them! I told them they were not going to shut me out again, like they did when my mom died. I am strong! I told my dad that he has 3 children, not 2! My oldest brother pretty much gave up a life of his own in order to be “the honored one”. He does everything for my dad and we’ve been shut out for years.

Only when my dad thought he was dying did he say nice things to me. He told me (after I put my foot down & insisted that I was visiting him in the hospital) that “it was a treasure to have me there every day”! He said I was a “dear, dear, sweet person & he loved me”! I cried & couldn’t believe those words were said to me.

I’m 10 days post-op and I’ve barely been out of our home. I cannot visit him right now. But as I’ve said, I texted 3 days in a row with zero response. The 1st day I did get a quick response when I tried to tell my dad (who was discharged & on his way to cardiac rehab) that my surgery was over & it hurts quite a lot. I sent a couple of pictures. But the response I got was unfathomable. He told me “it looked like a nice, neat job” (*pictures above & below)! Even though I actually looked like I’d gotten beat up or walked through a war zone! He then told me about his bathroom issue of the day.

None of them called or have cared about me at all! My older brother called Craig once after surgery & that was because my dad wanted to know if I made it or not, I guess? Then he told Craig about my dad (as I was being put into the recovery room).

I’ve had 2 pacemakers placed and 8 other surgeries in the past 17 years. I live with systemic RSD/CRPS. They don’t even know what that is & never have cared to ask or see any of my special needs. But my dad got a pacemaker 6-7 months ago at age 88. They made such a huge deal about it! I tried to explain that I’m on my 2nd one and got my 1st at age 40! I told them that “it’s not so bad”! They were indignant & furious that I didn’t see that him getting a pacemaker was the end of the world as we know it!! I never got one ounce of empathy, love or even a phone call after any of my surgeries nor either of my pacemaker surgery’s.

It’s a horrible rollercoaster. I stop seeing & talking to them for months at a time. Then I get phone calls asking me why I’m not calling my father? I’m so tired of being treated like the scum under the sink! My dads managed to turn all but 1 or 2 of my cousins against me & all of my aunts & Uncles. The one Aunt who never judged me and somehow saw through the charade, died a year or so ago. I have a couple of cousins who know, saw & understand the truth. One of the 3, passed away last week.

I had a favorite aunt once, she used to put food into my pockets when I’d leave after visiting her house as a kid. She has stuck by my dad & his stories. I asked my dad earlier this year if he’d told that particular Aunt, that we we’d been meeting for dinner the past few years and had been chatting etc? He told me “she doesn’t care about you she has no use for you!

I dared to speak the “family secrets”. I dared to get help and be a real & separate person. To make a healthier & better life for my husband, my daughters & myself. It’s been hell and I’ve tried to keep kindness, hope & empathy in my heart; & God in my soul.

So all in all, I almost lost my dad this month. Regardless of how I’ve been treated, he’s still my dad & we only have one dad. I also underwent a major & very painful surgery 10 days ago. A tumor was removed from my middle ear. The surgeon drilled into my skull and mastoid bone. Ten days later, I’m still suffering with a lot of pain & fatigue. Once again, I feel totally ostracized & uncared about by my biological family. There’s only one person whose been by my side for the past 23 years & that person is my husband & soul-mate, Craig. We’ve been by each other’s side through so much and I thank God for him every day.

Doctors Are Only Human….


I have been to too many Dr’s since my auto accident of 2002. I have had my share of good and kind, helpful men of medicine. But then I also have had more than my fair share of mean and inhumane and insensitive medical and osteopathic physicians. I suffered a brain injury in that car accident and had to go into brain injury rehab for 3 years following. I have a terrible short term memory, when I once had memorized my full address book! I had a photographic memory in which I could look at something and study it as if studying for a test. Later I could recall that image in my mind. Now I can’t do either! My cerebellum is injured and will not get better. I love to write and as for reading, I have to read, re-read and re-read. I then get frustrated and go back to re-read again and then maybe even another time. Finally, I may retain the “idea” of something in a book or an article, but that’s as much as I can retain now for later recall. I am only telling you that because I do remember how awful I felt after leaving a shoulder orthopedic Dr’s office in 2003, after that MVA. I had been to visit several shoulder Doc’s by then…and knee Dr’s and heart Dr’s and so on. I had yet to visit the Cleveland clinic but that was to come later on. This shoulder Dr. said to me “What part of “I CAN’T HELP YOU, DONT YOU UNDERSTAND? Is it the brain injury or what?” Oh My Gosh! I was mortified as was his office staff. I left in tears with the man from the driving company, who transported me that day, also flabbergasted by this Dr’s words. That man was definitely NOT a Healer. I’ve had many more of those awful things happen to me in many different Dr’s offices. But I didn’t give up or lose hope. I kept going until I finally found someone to listen to me. Someone who didn’t want to blame everything on the abuse issues I suffer. I found a shoulder Dr. who sent me to the Cleveland clinic and they agreed with his diagnosis. They had thought they might do a “cadaver muscle / nerve transfer” surgery. But then they felt that I had too many other pain areas and that would be a huge, major surgery along with only fixing one small pain issue. I was sent back to the kind shoulder Dr. in Michigan, Dr. Jeff and he listened to me and touched my shoulder in a certain way. He knew right away that I had besides 2 torn rotator cuffs, a ruptured biceps tendon. It had ruptured a year earlier in that car accident but nobody would listen to me. I had so much pain and so many issues that I was “poo poo’ed” by many health professionals; until I finally found a great team that has been helping me. Dr Jeff did a surgery to detach the ruptured biceps tendon from the bone and reattach it with 2 screws. It fixed the nerve “zings” and though it was a painful surgery after 2 frozen shoulders/adhesive capsulitis for a year and 2 torn rotator cuffs. Soooooooo…….
I just happened to be on “LinkedIn” very very early today. I could not sleep. Something was drawing me to this place I hardly ever visit. I mean…I’m in pain…I am unable to work. I do what I can to try and help others and selfishly that makes me feel just a little bit better. I am in pain 24/7 and to others, I “look good”. People tell me that I “look fine” and that I “look young” and that does feel good. Though at times it makes me feel less cared about and less listened to. I feel judged sometimes and if I complain too much, people don’t want to be around me. Even if I don’t really complain at all, God forbid that I answer that question that just about everyone asks when they run into us someplace “How are you?” Well, my friends….you are damned if you answer that and damned if you don’t answer it. You may talk too long, too deep, or not enough. You just cannot please everyone so please …please yourself. Say what you need to say and to only those that you trust. No sense going into a long history of your issues with people who don’t care or who may try to hurt you with it later on, right? I mean, even those that we love or those that we hope love us back, they get tired too. I can’t say that I blame them as I grew up with an ill mother. She was in and out of the hospitals all of my life. The ambulances came into our house since I was a tot in the ‘onsie’ pJ’s, rubbing my eyes in the middle of the night when strangers with gurneys were taking my mommy away and telling me to “get out of the way”.
So this morning I was reading and I found this blog here on WordPress . It is called “Musings of The Distractible Mind” by Dr Rob Lamberts, LLC. It was an awesome article or post. I subscribed to his blog and now I want to share it with you. I give him all credits for this post as I have copied and pasted what he wrote for you to read because it’s awesome and I think it will help my readers. Mostly because many of my readers are chronic pain patients. Some with RSD/CRPS, like me; and others with various other pain issues and a wide range of medical problems. I admire this Dr’s writings and I am not copying his work as my own, only posting it here to share it with you because it’s awesome. I give you his name and the name of his blog and the name of this blog post. I pray that he is flattered, but if he does get upset, I will do whatever he wishes. I only hope that it will reach and help many people. Here is HIS blog post from July 2014:

Dr’s Are Not Healers

It’s a seductive idea. We doctors possess knowledge and experience which can not only help people, but can save their lives. We get opportunities to be the right person at the right time to offer the right help that makes all of the difference. It’s one of the greatest things about our profession. It’s also one of its greatest traps.

I’ve heard many doctors refer to themselves as “healers,” as if we have some special power to bring about healing in our patients. This idea confers some sort of a higher status and originates, to some, from a “higher calling” to a more noble life. Again, this is a logical step, in that we have opportunities on a regular basis to help and even save the lives of people. It’s natural to believe that somehow the healing power comes from our touch, or even from our knowledge.

It doesn’t. I am not a healer.

Healing is what the patient does, not the doctor. As a physician, I am certainly one who can help the patient find a faster road to healing, but I don’t heal. I help.

Why am I taking the time to talk about this? Why get stressed out over whether I am a helper or a healer? I think that the belief in doctors as healers causes significant harm to both doctors and patients, and that getting a better perspective about the roles of each will greatly improve the care given. Here’s why I believe this is a topic that needs addressing:

1. DOCTORS OFTEN FAIL AT HEALING (AND WILL ALWAYS ULTIMATELY FAIL)

There are many patient problems that do not get better, despite my best efforts. There are countless pains I can’t remove, and many problems I do not solve. Even when I succeed, the success is always temporary, as a new problem will eventually come back. And if healing is our ultimate goal as physicians, we all are total failures, as all of our patients eventually die. If healing is held as our goal, we fight a losing battle. We are the soldiers in the Alamo, offering impotent resistance to an overwhelming force.

If I believe in myself as a healer, I will face constant disappointment and defeat.

2. WHEN HEALING OCCURS, IT IS OFTEN INDEPENDENT OF DOCTORS

My patient may follow my advice and not get better, or may disregard what I say and recover from their problem. My direction is imprecise and imperfect, based on my knowledge and experience along with what I believe to be happening with the patient. But my experience and knowledge may not be right, and my interpretation of what is happening with the patient may be inaccurate. Healing is something that happens in the patient’s body. It’s when they get better, whether or not I am involved in the process.

Belief in myself as a healer is based on a falsely high opinion of my knowledge and abilities.

3. PATIENTS WHO SEE DOCTORS AS HEALERS WILL EXPECT TOO MUCH

I’ve seen it. I’ve heard people’s frustration when I’ve told them I can’t fix their problem or remove their pain. They feel like they shouldn’t have to hurt, or that if there is something wrong it’s because I’ve missed something. These are the folks who buy the “miracle” cures pandered by Dr. Oz and other profiteers. They hear the promises of health and wellness from the media and are disappointed when we can’t offer the same.

By believing I am a healer, my patients will eventually be frustrated and disappointed.

4. DOCTORS WHO TRY TO BE HEALERS DO HARM TO THEIR PATIENTS

The pressure to find the “magic bullet,” or the unifying diagnosis leads many doctors to practice bad medicine. This is a pressure we all feel when faced with the powerless feeling some patients bring. This leads to the ordering of unnecessary tests, performing of unnecessary procedures, and prescription of medications that should not be given. I believe this is what drives many doctors to overly-prescribe narcotic pain medications and other addictive drugs. We don’t want to stand helpless; we want to do something.

To protect my role as a healer, I am drawn away from my training and toward the task of finding a miracle. In doing this I can cause significant harm.

5. TO PROTECT THEIR STATUS AS HEALERS, DOCTORS WILL OPPOSE ANY OTHER PERCEIVED COMPETITION

Doctors in the past have been held with reverence by the general public. We possessed that “secret knowledge” that others didn’t have access to, knowledge that fueled our healing power. Now everyone has access not only to all of the knowledge we have, but also to others who offer alternatives. This causes many doctors to aggressively discourage patients to research their own problems and to attack alternative providers. In defending their turf, however, they are giving patients an ultimatum: us or them. More and more patients are choosing “them” because of this and are rejecting what we offer.

By clinging to our power as healers, doctors have greatly harmed people’s trust in our profession.

So what’s the alternative? Does it really make a difference what we call ourselves as long as we practice medicine? I think it does. Now that I’ve got time to choose the best way to practice, I’ve seen that there is a much better alternative to being a healer: being a helper.

Yeah, that sounds all dull and boring, I know, but it is not only more realistic, it is a much better way to practice medicine. Here’s why:

1. BY BEING A HELPER, I ALWAYS CAN SUCCEED

I may not be able to fix someone’s pain, but I can reduce it or can help them get through it. Every visit is an opportunity to help someone, and once I have helped them I’ve done something that can’t be taken away. I don’t have to see disease as a foe to be defeated, but as an opportunity to give to my patient from my experience and knowledge. Even when patients ultimately succumb to death, I have many opportunities to help them do so with peace.

2. BEING A HELPER KEEPS MY PRIORITIES STRAIGHT

I don’t have some crazy idea that I have special powers. I don’t believe that I’ve been “called” or “chosen” to do magic. I just help people. My focus isn’t on me (as if my care was not a performance), but on the person I am helping.

3. BEING A HELPER KEEPS EXPECTATIONS REALISTIC

If my patients see me as a helper, not a healer, they will listen to my advice with different ears. I am standing beside them, not above them. They are far more likely to listen to me when I am offering help, not pronouncing my wisdom.

4. HELPING MEANS DOING NO HARM

The temptation to offer more tests, more procedures, or dangerous drugs becomes much smaller when I take the role of helper over that of healer. I don’t see a need to prove myself, and will consider the harm of actions much more closely. I won’t over-prescribe pain medications because I will see how it harms my patients in the end.

5. BEING A HELPER LETS ME EXIST IN THE INFORMATION AGE

Like it or not, I am compared to the homeopaths, the herbalists, the chiropractors, and the doctors on TV. When people embrace alternatives to the care I give, they are not necessarily rejecting me; they are seeking what they are when they come to me: to feel better and to lessen their fears about the future. If the help I offer is held next to the miracles promised by others, I think I will win. If patients are helped by others, though, then I should be glad for my patients, not upset about the success of my “rivals.”

We call what we do “health care,” which implies a relationship built for the sake of a person’s health. I believe the best way to accomplish this is to have a realistic view of who we are and what we do. I am not a healer. When I try to be one, I always fail and am always disappointed. I am a helper, and in taking that role I can always have opportunities to succeed.

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Protected: A Story of Unconditional Love…..


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The Castle outside My Window….


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Here’s a story;
There’s a castle out there!….I can see it from the window of my small home that is bare and has what I need but not a lot a lot of other “stuff”. My home is full of love & trust…now….! That castle I see…the one U can see from my window….has people in it….people from my past! They are all having fun, laughing, dancing & thinking that they “have” each other….It looks great from the outside….and the unknowing ones want to travel to the castle to see the inside and have “fun” with all the people in there that seem to be vest friends and getting along….. But I KNOW…I KNOW….what is inside that castle, and I know what goes on in there! Once you are caught in their web, you want more for awhile ..until you are so low, so hurt, so abused and put down; that you either figure it out …or…you don’t!…..That depends on your true heart and soul….It’s not what you say to Jesus on or in the places where people can see it…. It is what you say when you are alone with him…. In your soul and in your heart… Where no one else knows or see’s… That is the truth of the love I have for him. It is inside…. Not posted or boasted all over for me to be judgmental and/or self righteous….to make others who believe something else feel small or “less than”….

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Heartbroken


.** I’ve only ever tried to do the best of my ability to be the best mother I possibly could be. I don’t know how one person can go through so much loss, hurt, physical and emotional pain?  My Dr’s cannot believe that I’m NOT crazy or dead….it’s because I am strong….I pray for “HOPE” to come back…..soon…I’ve lost so much and in this life I continue to lose more and more each day, it seems.  I  suffer from “C- PTSD” & “Battered Women’s Syndrome”, which can only evolve because of what I’ve endured!  Next in 2002, I was in a  MVA in which I suffered many injuries including :  an MTBI and had 3 yrs of TBI rehab, 12 surgeries, much chronic pain, a pacemaker, A-fib, heart attack (after a tremendous loss in 2005 *(that continues to this day), the Dr’s say it was a true heart attack, but from “broken heart syndrome”), then a CVA in 2006 and then I acquired RSD/CRPS in 2007, after a foot surgery. Later in 2010, it became “full body/systemic RSD/CRPSII” and I have degenerative disc disease, Polyneuropathy, Radiculopathy, Long thoracic nerve damage…just too much to describe….the pain is still nothing compared to the pain in my heart …still. .I pray for the pain to stop and love, light, health and goodness to take over…