What do you do when the caretaker needs a caretaker?! Let me preface the following by stating that I love my Mother! She is my best friend, mentor, hero, inspiration, and my entire world. I am strong, tenacious, brave, empathetic, compassionate, caring, opinionated, passionate, giving, smart, sincere, loyal, protective, and too many years other traits to list, because of my Mom. As we’ve both faced adversity throughout our lives, we’ve been there for each other unconditionally. We may not always agree; but we find ourselves on the right path, regardless. We are always there for each other, good times and bad. She is my support system and I hope I am hers. She has been my rock all of my life and has never given up on me or turned her back on me. Even when it was deserved. In the past four or so years, as my chronic illnesses have rendered me unable to work, I have come to depend on my Mom for financial support as well as emotional. I have tremendous guilt over being a burden, but that is for me to deal with, not her. I feel that she did her part in raising me, and now it’s my turn to help her any way I can. The sicker I get, the harder it is for me to get to my numerous appointments for therapy, treatment, and testing. Besides the food store, pharmacy, and occasional lunch out, I don’t get out much. Which means Mom doesn’t get out much. More guilt! We haven’t made many friends here for various reasons and we are both extremely social people, who don’t do well without the social interaction. Lately, I’m much more comfortable at home, where I can hide and not worry about presenting a brave face to the rest of the world. I do occasionally feel too ill to make it to these scheduled appointments, and there goes more guilt. I push myself hard, but some days my body wins out over my mind, and I just can’t get out of bed. Mom does what she can, more emotional support, since she is unable to drive, due to vision loss from Macular Degeneration. She feels guilty for not being able to do more and that upsets me. It’s a vicious cycle of guilt, depression, anxiety, and panic. We are handling the situation as best as we can, tackling each new challenge one day at a time. Who would have ever thought that getting to a doctor appointment would be a challenge?! Our lives have changed dramatically as I’ve had my medical and emotional issues to fight through. And Mom is learning to cope without driving, a huge blow to her sense of self, freedom, and independence. I have the extra “burden” of getting Mom to her own appointments, sometimes weekly, monthly, or on demand. The “burden” is something I put on myself. Healthy or sick, there’s nothing I wouldn’t do for her without batting an eye. Especially after all she’s done for me my entire life. It’s more pressure on myself to not let her down. Ever! I can’t say no to her, as she asks for so little. All I want is to be able to give her everything! Not too much pressure, huh?! We are feeling our way through this crazy, scary, unknown future one hour at a time. But we’re doing it together! I worry endlessly and obsessively about losing her and wonder how on earth will I cope on my own? My consolation is to remember everything she’s ever taught me and keep using these skills in my day to day life. I’m also in therapy to help me with coping techniques as this entire experience with chronic daily migraine and pain is uncharted territory for us both. But, in the meantime, we are going to enjoy our lives and be thankful for every sunrise and each beautiful new day. And together we will #AlwaysKeepFighting! and #StayStrong!
Ugh. There’s something so totally demoralizing about waking up with a migraine, especially when I took steps the day and night before to lessen the risk of another day of this.
The Road So Far - My Journey 
Dr. Goodwin, you are so right. Many of us are in journalistic positions and we are also pain patients or medical professionals. The maddening part of all this has us reeling with emotions and anger. Thank you for reminding us of our duty to professionalism. And thank you for writing your reply. We need so many of you to do that, but understand the current ramifications.
I am a neurologist, adult and pediatric pain and headache specialist, and past chief of the division of pain medicine at a major west coast university medical center, trained at Stanford and Harvard, with degrees in psychology and comparative (neuro) pathology at the undergraduate and graduate level from the University of California at Davis. I am a strong advocate of patients and feel that the current government stance is not supported by the evidence and is totally misguided in its approach,often harming patient care where chronic non cancer pain is concerned even if it does address some legitimate concerns about poor prescription practice, addiction, accidental and deliberate overdose, abuse and misuse of controlled substances. Many of my colleagues who feel similarly are too afraid to speak up because of the perceived threat to their state licenses by the 50 medical boards of the USA. That threat is real snd clinicians have paid the price. The state board attitudes and actions are often not in line with their sanctioned publications that are required reading for all clinicians. California is an excellent example of this.
The topic of this article is excellent but it’s execution is as poor as that of the 60 minutes ‘exposé aired recently. That was certainly not a documentary. It had s one sided agenda. This article I s one sided too and loses its ‘punch’ because of that.
This ought to be expanded into a more neutral position showing both sides and without the sarcasm. It would then be more useful in countering misguided governmental agency attacks on how pain is treated.
There is much judgment and hipocrisy involved on both sides and this needs to be resolved and removed in order for the as yet improperly acquired evidence to be subdivided to analyze very different circumstances, practices and behaviours of disparate groups currently lumped together as one. There is overlap and misinformation as well as disinformation involved by patients, clinicians and scientists alike where the fields of pain and addiction medicine is concerned. This must stop in order for a rational and carefully administered change to take place.
Kristy: I think mono vision only affects depth perception.
He is clearly blind.
Just blind.
Diane:
“A person convinced against his will
Is of the same opinion still”
It is a shame we don’t get the same kind of support from our families as those with cancer.
That just means we have work to do in sharing our stories.
Our predicaments.
Our authentic anguish at being betrayed and abandoned
That pendulum is already swinging.
God bless us every one.
It is so sad to think in this’enlightened’ time we live in that pain is still a bad word. Tell anyone you have something hurting and their minds automatically go to addiction. And to think someone can’t get pain meds after something as painful as hip or any surgery is asinine. It is abusive. Even our beloved pets get pain meds because the vets don’t want to see them suffer anymore than we do.
Thats it!! Yes I will go to my vet !! Bet I would be treated better than by my doctor. Anyway I could go on for days, ha! but who has the energy to write let alone read a long post.
Thanks for listening,,Brenda in Bama….
I would like to point out that the CDC is equating long-term opioid use to “abuse”, even if you are taking them as prescribed.
“According to the CDC, about 12 million Americans abused or were dependent on opioids in 2013. “
This Article shows the misinformation that is spreading, with no real common sense to counter it. Whether the subject is Opiates, The “War” on whatever is popular this week, it seems to be getting worse. It is truly frightening and disappointing. People watch the “News” go Online, or read Newspapers and think that they are informed. There does not seem to be any real analysis of what is “True” anymore. The DEA has been spreading misinformation for years, leading to a bigger Drug Problem. Apparently they can say whatever they want to justify their funding. They never get called out on the Lies, or have any sort of accountability.
The Media appears to be giving us the “News” but it is Slanted in the favor of sensationalism, and has an agenda. The Coverage of our current National issues is frightening. It is very one sided, I watched the coverage of the protests against Racism, clearly showing how awful the Protesters were while downplaying the reason for the Protests. People who I though were at least Open Minded, were parroting the theme. We have a System that is functioning by instilling fear, hate and misdirection.
Our Country seems to be breaking down. The Media Targets a new group every couple of days.
Chronic Pain patients are just another scapegoat for the problems this country is facing. There is no empathy or common sense because of the labels. In watching some of the Political discourse lately some really ugly themes are emerging. I try to look at the big picture, and ask “who does this benefit?”. Big Insurance, Big Pharma, even Workman’s Comp.
There is a theme, that it is OK to ignore people in pain, because Mainstream Media, and the Insurance companies have made the subject about “Addiction” . Even when people have direct personal knowledge they ignore it, and it is OK. It is like an alternate universe. It is not just pain patients it is anyone painted as a scapegoat to avoid the real problems. It is deeply disturbing to me the misdirected hatred and rage turned to whatever group. It rings of the Nazi’s. The misinformation campaign is not being questioned. People I though were descent human beings now have an ugly opinion about so many fellow human beings. These ugly opinions are being repeated by the Media, as if they are true. They give credence to the justification for some horrible acts. A certain percentage are actually worked up to violence against the latest target for rage. Immigrants, refugees, the disabled, certain races, it is getting out of control. The ones benefiting form this are the ones profiting off of it, The War Machine, the Pharmaceutical Industry, Insurance are all making Billions while the real issues are ignored, The DEA and other Agencies get more funding if they can scare us. It is getting ugly out there. I am afraid to even mention Chronic Pain, I would be patronized and judged. I am afraid to speak up anymore, it has come back to bite me. I am shocked at the people who believe this nonsense, and there are some that don’t but have to repeat it no matter how ridiculous. There is no accountability in Health Care anymore, I can’t imagine the mindset it takes to ignore the suffering of even Cancer Patients, and people with clearly visible injuries. There is no though to their quality of life, only the fear that they might get addicted! This has led to the justification for not treating people and not having the least shred of empathy. My Mother passed in a Nursing Home and was not even given Acetaminophen after hip surgery. She could not articulate that she was in pain. I know people with serious pain that drank themselves to death, and were afraid they would get addicted to pain meds. That is what their Doctors told them. Death by Alcohol does not seem to register, but it is a horrible drawn out death. They eventually bleed out. This does not get mentioned in their Articles.
Opiates have been around for thousands of Years, they don’t get Patented, unless they are formulated slightly different. The “new” pain medications have more side effects, minimal effect on pain, but they are Marketed as if they work. The effect of the ignorance and the pursuit of profit has undermined Scientific research. Very few new drugs on the market are significantly better than the old ones, but they are marketed like they are. Some are more dangerous, yet they make Billions for the drug companies. Medicine is so profit driven that there are not many real “Breakthroughs”. There is no real Science behind being applied.
I used to wonder how do these people sleep at night? I suppose they can, because they believe they are “helping”. Many have contempt for patients, they blame the patients for the lack of re-reimbursement and paperwork generated by the Insurance Companies. The misinformation helps to justify treating people this way. It is not just pain patients either, it is whatever group they blame this week.
@Krissy,
My kids are the same way. My youngest just tells me I’m a junkie. At 1st it hurt but then angered me because of the BS he looks at on Google, etc…. I have up trying to explain anything to him.
All one has to do is look at this websitehttp://www.dea.gov/pr/news.shtml it lists all the press releases by the DEA’s HQ and 21 district offices… which is then regurgitated by much of the news media. To understand the Google results.
What you don’t hear about is that every time that you see a BIG DEA drug bust.. that normally represents only 1% of what is actually getting past the DEA and on to our streets for abusers/addicts to us.
“If you tell a big enough lie and tell it frequently enough, it will be believed.”
― Adolf Hitler
I find it interesting that they are lumping addiction and dependency into the same group.. but.. this follows the recent CDC guidelines that basically states that there is no longer a distinction between addiction and dependency.. everyone who consumes opiates on a long term basis has a OPIATE USE DISORDER..
Good thought to do this, NPR, but I’m not surprised. I recently wrote a small article for you and I sent a link to my brother so he could see it. He sent me back a link on drug addiction. I have to give up trying to convince him what is wrong with me. He doesn’t read about my illness, he only sees the “frightening” thing he calls addiction. I don’t even think he looks at “medically dependent,” because I tried to explain that to him too. He is a highly-intelligent, successful business man who knows a lot about a lot. But he seems to be somewhat blind in one eye.