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This is not the life I signed up for

AngryBird

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FML. I could leave it at that, but I'm feeling the need to say a few things, so here it goes.

In a perfect world, my life could be good, great even, but it isn't.  Growing up, I was taught all the right things, and tried my best to do most of them.  Busted my tail to get an education (first in my family to go to college), stayed out of trouble, helped others, served my country and believed in what I was doing.  What I didn't know was the wake-up call was coming, and when it did, none of those things mattered.

In the early 90's I experienced an injury that resulted in my first spinal surgery. We can fix you up good as new, they told me. Liars! That doctor wasn't even honest about what surgery he performed.  I found out later that the laminectomy he claimed to do was actually a fusion, which, wait for it...failed, resulting in the need for another surgery when I lost the use of my arm due to nerve impingement and damage.

Taking the advice of a trusted friend, I got referred to a different doctor, highly recommended and paid for out of pocket to avoid another mistake by the military medical system, but he failed me, too. Broken and unable to do my job anymore, I retired from my military life and moved on to civilian life and the search for a competent doctor to clean up the mess.

Enter surgeon number three!  Ten years and at least that many doctors later, this one is willing to try to make things right.  All the same tests and procedures I had been through so many times before, we repeat.  Just for clarity, I had a full time civilian career going since my retirement, but I was struggling to keep going. 

During the pre-op workups, it was discovered that one of the previous docs had severed one of the two nerves needed to swallow. There's some good news!  Doc three and the ENT explained that the other one could be damaged during this surgery and I could lose the ability to swallow. He was willing and I was desperate, so on with the show. 

My body eats up anything it doesn't like, such as donor bone, so bone from my hips were used for the last two surgeries.  They do that at the same time as the spinal surgery.  I wake up itching all over and covered in hives because this doc uses morfeen (I know how to spell, just didn't want to do it right), even though I was very specific about not wanting it and why. I can truly say I have my a$$, or at least a good bit of my pelvis, on my shoulders.

After forcing myself to do the prerequisites to be released in two days, climb four stairs and poop, I'm on my way home with a very inadequate small amount of hydr0, 30 and no refills, and referral to physical therapy. I won't list all my issues, but DDD and crohns are part of the problem.

Did it fix the problem? Of course not. I completed 60 sessions of PT, as well as working on my own with the help of my occupational therapist neighbor. I've tried alternative therapies, meditation, acupuncture, Tai chi, you name it. 

Just over two years ago, I finally had to admit I couldn't work anymore after laying in my vehicle for two hours in the parking lot in tears unable to make it into the office.

My condition is now worse. (Never challenge worse)  I didn't think that was possible. Compassionate care doesn't exist. Pain management has become a joke. I've tried to find help, and failed, but no more. I'm on the war path against crap doctors and crap medical care. I don't get disability, because that would require a doctor and I don't even bother seeing one for anything anymore. What's the point? 

I used to be one of those people who has talked people who wanted to take their life out of it. You know...that whole "permanent solution to a temporary problem" thing.  I don't do that now. When my wake-up call came, I realized not every problem is temporary. After suffering for over 20 years I now understand exactly how they feel. This sh!t is forever and this is definitely not what I signed up for. Where is the exit?

Sincerely,

broke, broken and angry as hell.

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AngryBird

Posted

Thank you for that @2earls. This is the only place I've found where I feel like others understand. I have both Tricare and private insurance (BCBS), which I call Big Company Bullish!t. No joy in either system. My hubby and I also pay cash for a concierge doc who doesn't take insurance. He doesn't write pks, except the occasional tr@m script, yet, but he does listen and is the most cost effective way for my spouse to get what he needs for his CVID and he does house calls. Just a GP, but he takes student docs into his practice regularly, which gives me a chance to bend their ear as well and he lets me see the letters and stuff he gets. It's a start. 

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Same here - you are not alone and it will get worse and worse.  #notalone

Ooops, need to clarify, I mean big pharma and the system will get worse, as Doctors play a cat and mouse game and Government rises every stronger in our lives. Quote me if I am wrong but I believe 40% of the jobs are now Government related. I love the red , white and blue. Always will but this police state is growing by the day. 

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Angry Bird

I feel your pain maybe not in the same places but every day that I watch my husband who is retired now on ssi but we both still work clutching his knee or his back as he has vertibrae fusing in the upper and lower or he watches me have to grab my knee or another arthritis headache I get furious with a health care system that denies those of us that are in pain ( and older ) any relief but they're quick to try to prescribe physical therapy ( seriously for a cyst in the knee or a dislocated hip disintegrating from age ) or steroids ( let's all get type 2 diabetes and tacchardyia ) we both are tired and so are a lot of people all ages of being treated like crap because we are in pain.  Are there any compassionate  doctors left? The dea new drug schedule for pain medications have all of us under the microscope  and I'm frustrated as hell and so is my husband. I'm sure you are too.  This website is the only hope so far we've found. Best of luck to you.

I can only imagine if we go through this how anyone younger can even get an aspirin these days. 

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AngryBird

Posted

Thanks for speaking up @KB64. I agree with what you said. It's only going to get worse. I'm taking my health into my own hands. 

Have you or your husband tried kr@tom? I don't know what state you're in, but it can be ordered from many states legally, for now. I'm one of those cynical people who doubts most things I hear, until I can prove it to myself, but that plant is a winner for me. Cheaper than other things and useful.

Also, you may find mm to be helpful. The edibles are awesome deliciousness, especially some cookies I got recently. 

We have good vendors here for both. 

 

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@KB64 I am one of those people who developed diabetes from being on steroids. Since I have stopped taking them, I'm almost back to normal. I could rant on endlessly about how pain patients are treated these days.

When I was searching for a doctor, I was either ignored or insulted and most docs try to stear you into the costly injections which make more money for them than writing a prescription. After years of trying every treatment, therapy, surgery, that they could throw at me, I had to say enough is enough. 

Being in extreme pain is debilitating and makes it very difficult to get from doctor to doctor and fight for some relief.  That's why I am passionate about working here and helping members find some relief. I know it's hard to afford, but at least it gives us choices and for some of us, gives us our life back.

I have found kratom to be helpful as well and can help keep the amount of meds you need at a lower amount. Certainly worth a try and the good vendors will help direct you to the right strains for your needs.

Of course they are trying to take that away from us too. I'm a proud American too, but the suffering caused by the current climate against prescribing needed medication is a disgrace.

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I am so right there with you. I totally understand why people with terminal illnesses want to end their lives sometimes. Sometimes my pain is so great that the suffering overwhelms EVERTYTHING. But I try to notice the simple things-colors-children-the sun. Things that make me feel alive and happy. I know that does not help at all, but you are not alone at least. xoxo

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AngryBird

Posted

You are so right @2earls. Sometimes people are afraid to tell someone when they're down. Just knowing we are not alone can help. 

ThIs has become a place where I can be active while stuck at home. I'm glad you shared what helps you @spring.

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AngryBird

Posted

OK, my DBG friends. Time for a new year update. I just got home from a 3 hour drive to chase down a package that was mislabeled, wrong zip code. After four phone calls to the carrier, I got the driver on the phone and drove to meet him. I got my box and am back home. Of course, I'm out of everything and trying to resupply.

Happy New Year!

(This seems like the story of my life...And, no I wasn't afraid to go after it.  It's a package I paid for and I felt entitled to have it. And I got it. Just seeds, but will be helpful until I can get the rest of my items.)

So, my one and only attempt at a resolution this year is, don't run out, don't increase doses, and start moving. I even got some Chantix. Guess what else I'm trying to do?  I need the money for useful things, so cigs have to go.

Last year I lost over 60 pounds, and my goal was 50. Crohns helped me, though. I can't eat without medication, and I can't afford to medicate daily. I set out my calendar and decide when to dose depending on what I have to do. I'm down another 10 lbs since Christmas, so I've got to get a handle on the eating thing. Nobody loses weight over the holidays and I'm running out of extra weight fast now.

When I started this blog, things were pretty bad. I had no help, no hope, just a bunch of strangers across the web who were willing to share ideas and resources. People like @2earls and @Heavenlee...Thank you and all the others who spoke up and helped me get going. This was almost a goodbye note, but not now. 

Now that I can even think walking might be possible, I want to try to help others who are where I was.

@KB64 and @Spring, I hope you both are well and making progress, too. Homebound folks live a solitary life. People like you folks give me someone to talk to. Reading this site is one of my pastimes and getting to know new folks makes my day.

Good luck and health and happiness to all of you in 2017.

 

 

 

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Sunrise81

Posted

I LOVE this forum! All of y'all have been my saving grace! I've even become good friends with a member on here in real life (we live very close). Unless you've been through our chronic pain life, you won't understand. Never fully. But having others to talk to who live in our situations, makes it much more bearable. We have each other to lean on! 

I have my good days and mainly bad days. But always hold on no matter what! The thing I hold onto is my son. I honestly wouldn't be here now if it wasn't for him. This life is harder than anything! Cause this shit only gets worse (both pain and the fucking medical field). Thank you to each of y'all and esp to @2earls and @PTFC for keeping this place going! Y'all are the true heroes!! ? 

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Lovely blog @AngryBird, (you know what I mean) it's nice to log your thoughts and feelings, I wish I had the bottle to do so. This seems a very underused part of the forum. 2earls is on the money though, there is support here, and it brings me joy to see it lift someone's spirits, if only a little never mind a lot. Stay safe everyone. ☺ 

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oldfart

Posted (edited)

 

 

@AngryBird I have heard many horror stories about military doctors, and it makes me shudder to think how our service people are trapped in a horribly flawed medical system. I'm sure that they are not all bad doctors, but if they are like the rest of the medical community then at least 99% of them are absolutely frightening. In addition, active duty military members can't sue the military, making the Hippocratic oath the only thing which holds military doctors to any standard of excellence or competence, and that is all just WRONG imho. Except for those in the military, anyone can violate an oath.

I remember a time when one could choose a doctor in much the same way as one would select a car. Not every model was the right fit for every individual. In those days, the right doctor could and would prescribe the necessary products to alleviate pain. 

But since our ever-so-helpful nanny-state government took it upon itself to dictate what our health care professionals can, and more importantly, cannot write on their prescription pads, the past is gone. Doctors in every state can now run afoul of the D3@ and face criminal charges for doing what they may feel is right for their patients. Going to school forever, meeting internship and residency requirements, not being able to earn a salary until approaching thirty years of age, and then facing the probability of being sued for malpractice apparently are not enough to earn a doctor the right to practice medicine as he or she sees fit. Don't get me wrong, the education, training, and medical malpractice are all necessary to ensure the right doctors are the ones who practice in their profession. I am just saying that as a whole, the most rigorously trained group of people in our society have been stripped of their right to practice medicine in the manner they choose. (Isn't "practice" an interesting word to describe the function of doctors and lawyers?)

Looking at the way things are today, I stand agog at how we as a people blindly squandered our rights and how we heedlessly elected imperious despots into office. We are the hapless, enfeebled peasants, caught, not by the vagaries of indifferent tyranny, but by the smothering, crushing overreach of our government wetnurse. If we submit strictly to legal methods available to us, it is virtually impossible to have the best quality of life.

We who are cursed to writhe in pain live an impossible existence of diminished capacity. In addition, the ravages of age await us all. I grow more withered from both circumstances as time inexorably proceeds. Chronic pain has become an impossible existence. I thank this entire community at DBG and every OP for your assistance and concern.

God bless you all. God bless us all.

Edited by oldfart
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leelawadee

Posted (edited)

Hello. Is there a way to single out particular members so I can offer some pain management at my cost? Or perhaps there could be an account where small, or larger, donations can be offered up by those with a sense of empathy? Those donations would cover 'at cost' vendor purchases. I've been working vendor for 6 years, and only here on the forum for a couple weeks or so, and I live a comfortable life. I would be interested in helping well-deserved members with pain management at my baseline cost. This would leave me in an exposed position, but if there are truly well-deserving members here whom are well respected and trusted, I'd like to help out. I've put myself in a position riding the coattail of society and live quite comfortably as a result. I'd feel grateful to be of some service. 

Edited by leelawadee

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