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Old 02-09-2011, 08:37 PM   #1 (permalink)
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Location: Mansfield, Ohio USA
My PERSONAL Healthcare Experience.

Let me start by saying I capitalized PERSONAL for a reason. Having had 4 brain surgeries since Aug 28th last year and still have an infection in my brain they aren't sure if they will operate on basically because they hope the IV antibiotics I am on will shrink it. I believe with 100's of 1000's in debt to doctors, hospitals, pharmacies, my parents, I have first hand knowledge of how our system works presently and I would like to share it since Healthcare is such a political hot topic.

I was fired at the beginning of June. And because there was no way I could afford COBRA, I lost all healthcare benefits. So when this sinus infection hit at the end of June, I didn't do anything thinking it was just that a run of the mill sinus infection that would run it's course and go away. Well, middle of August, it got far worse. I went to a stat care not wanting to wait in an emergency room that was overcrowded and was asked for my insurance card. I admitted I didn't have any and was told to sit in the waiting room.

It wasn't long before I was called in to see the doctor. They took my weight and vitals and soon a doctor came in. He listened to my symptoms a constant green discharge from my nose, fever, chest congestion and difficulty breathing. The doctor wrote a RX for Z pack before I even finished the symptoms.

I stopped by a drug store on my way home, dropped off the RX to be filled, asked how much and was told $65. $65 I didn't have, as it had been over 2 months since I worked. As my mom and step dad were away, I would have to get the money from my grandmother. To which I called my mom and let her know what I had to do.

I made the trek 60 miles from Massilon to Mansfield in roughly 45 minutes down US 30, calling my grandmother as I drove to let her know what was going on, so I didn't just show up and say, "HI, I need $65." Plus, this also allowed me to make sure it wouldn't be a wasted trip with much needed gas wasted.

She said she had it and that yes, I could borrow it. So it was ok.

Now this is my first and basically only negative toward our healthcare system, I had SO far. IF I didn't have family to help and some don't, how could I have afforded the necessary medication? I wasn't told of any program by the pharmacy, that could help me financially pay for the meds.

After taking the 5 days of Zpack and waiting the 10 for it to supposedly work better I was feeling worse, I called my mom and asked if they could take me to the ER. Granted that was quite a trip from Mansfield to pick me up in Massilon and take me into a Canton hospital ER and back, I was asking them for. She told me to call 9-1-1 and have an ambulance do it, but I refused, knowing that was an expense I would never be able to pay and after years of bad credit, which thanks to my ex-wife was getting better, I didn't want to see plummet again. This was August 26th.

We got to the ER and again I was asked for insurance and so on. I filled out the paperwork to the best of my ability and submitted it. Again I saw a doctor and again my symptoms were pretty much ignored. I was given a RX of Bactrim and Ultram and sent on my way.

Those were filled that night and taken as directed. The next day, August 27th, will live with me until I die. I woke up totally unable to move or feel my left side. I couldn't walk to the bathroom so I pissed and shat myself. I couldn't talk so when I tried to call people all I could do was mumble. I however, was lucky in one aspect, I had internet and found my mom on facebook and typed to her what was going on. Again, I was told to call 9-1-1 but again fear of expenses kept me from doing so. My mom and stepdad again made another trip to take me to the hospital, they called 9-1-1 upon their arrival. Everything even now is such a blur, I remember bits and pieces. I remember the EMT's basically thinking and treating me like a drug addict, asking me what I took and when I shook my head and handed them my RX'd meds, having them thrown back at me and being told to stop lying to them and tell them what I was on. When it became apparent to them that they were not going to get the answer they wanted they ransacked my room looking for drugs. Then told me to put my shoes on and walk down the flight of stairs. They berated me when I couldn't stand to do what they asked me to. When it became apparent I physically was unable to, they went and got a chair with straps and carried me down, all the while still talking to me like I was on drugs and acting.

When they asked me what hospital I wanted and I was able to say, "Mercy". They gave me a rant about that was not where they "were allowed to take me". They were only "authorized" by the township to take my to Aultman (which to me, I'd rather die than go to.) They then called someone and got approval.

I don't remember much about the ride or getting to the ER at Mercy. I only have the info my mom told me after. The ER doctor and nurse at first were convinced it was drugs. They couldn't get a temp orally or under my pit that showed any fever, but after an anal temp it was 104. I was dying. My mom says that the ER doc wanted to admit me but he said "they" don't want your son admitted. My mom said that ER doctor fought all night to have me admitted. His fortitude and goodwill got me admitted. I had had a stroke, I was later to find out.

After that, I was admitted and the next day (August 28th) I underwent what was to be my first craniotomy for a subdural empyema. All I remember is waking up in the hospital, not aware of where I was. I tried to talk but as the day before, the sound wasn't there. My head was hurting and I felt the top to feel my hair shaved and stitches there. I tried to scream but nothing. I slammed something onto the floor and a nurse ran in. She asked if I was ok. I pointed to my head and shook it. I was medicated shortly there after with doctors who knew me (but I had no idea of who they were at that time) asking me questions looking me over and telling me what was going on. NOTHING made sense. It was just a big blurry mess to me.

I was in the hospital during that period for 7 1/2 weeks. Occassionally someone would come in asking about how I planned to pay. Thankfully, my mother was there to take care of everything. I did however, sign a living will. For me QUALITY of life supercedes QUANTITY. Other than that I don't feel I was treated in anyway, shape or form differently than someone with insurance, other than the hospital's social worker worked to get me home healthcare to provide me daily IVs of ceftriaxone (Rocephin) an antibiotic that I am still on 2 times daily, a "free" walker, rehabilition in Mansfield (as I was to live with my mother in Mansfield after release).

To me I felt slightly degraded, here I was 43 years old learning how to walk again. having to use a urinal where the nurses wouldn't empty it when filled so I would piss all over myself and the floor. Having someone in the AM throw clothes at me and tell me to wear these. No choice in what I wanted to wear (as my mom who visited me every day had gone out and bought me some clothing). In the process they did another crainy for the subdural empyema. I was amazed at how little pain there was. here my head and brain were being ripped open, each time a matter of life or death and there was little pain afterward. I was told my pain tolrence was up there from the infection and because I had been having it so long that the operations were actually a relief.

My sister came from Az and visited on her way to a wedding in New Jersey. I was ironically given steroids (having sarcoidosis and psoriasis for years I fought off steroids to treat either....) yet here I was on the very drugs I fought so hard against Prednisone and Methatrexone. I was getting calls from friends in Australia and all around the country yet my son never called or bothered to come see me. My dad did call after one of my operations and talked to the nurse and not me and when my sister told him he should visit me, he denied I was his son. Then why did he call?

By week 4, I was begging to get out of the hospital. I was doing well in my rehabs and garnered a day pass. I was shuffling pretty well without a walker or wheelchair and went through various practices to go up and down stairs, and told smoking could hinder my recovery. I was to go see the movie The Devil and eat at my favorite Chinese Buffet. I had a very good day, with my mom and stepdad, and had ONE puff of a cigarette. When I got back to the hospital, everything was fine. That night, however, I was to experience a pain I have never had before. Every joint below my waist felt like it was having a nail driven into it. It was so harsh that even at maximum Morphine I was in excruciating pain. The hospital and doctors ordered an ultrasound and found I had 2 bloodclots in my left leg, possibly one in my right leg. My left leg swelled to double its normal size in no time. I could not be put on blood thinners of any type because it could lead to bleeding in the brain. That was the most pain I can remember through any of this up to that point and that is through 2 craniotomies. They decided to put what I call an umbrella, they call it some technical term. Basically, it's a filter, in my chest to filter the clot so it wouldn't hit my heart, lungs or brain. They went into my right thigh up the vein and popped it open in my chest. Technically, that was operation #3.

Again, a date was set for me to get out, unfortunately, a day or 2 before that date, I was having severe head pain. That led to more MRI's and CT Scans, which showed more infection in the brain. Craniotomy #3. Again relatively painless but it pushed back my release date a week or two. I had become so pessimistic that I would ever get out alive, that I couldn't look forward to the set dates because something always happened that had me stay longer.

Finally, after 7 1/2 weeks I walked out. I got to Mansfield and had to start physical and speech rehabilitation within a week. The social worker at Mercy in Canton had set it up. I did well there and was released almost immediately from both rehabs.

On a Saturday night, I had 2 seizures after being taken off Keppra, earlier in the week. One while IMing a friend in Yahoo and one when I went to bed. Neither one made me pee my pants or dirty myself but besides scaring the bejeebies outta me I was ok after. I promptly told my mom and that morning went to the ER in Mansfield's Med Central. There I had a CTScan done and the ER doctor suggested when I talk to my neurosurgeon and tell him about this that the doctor there suggested he look at OsteoMyelitis. Which explained the big knot on my forehead the past few weeks.

That Tuesday I met with Dr. Khayyat my neurosurgeon and one of the best in the state, by reputation and in my eyes I've never met a nicer doctor or a more caring one. He scoffed at the idea of Osteomyelitis but ordered an MRI.

Days later and days before Christmas, I was in Mercy Hospital again to have my picc line that was my home IV for the antibiotics taken out and a new one put in. One week later I was to have a craniectomy. When I asked Doc Khayyat about cost, he said "don't worry about it. I am not, somehow I'll get the money. My main concern is your health and getting you through this." This day and age for a doctor to say that, especially to me who was feeling like a schleprock, floored me. Never in this day and age of lawsuits and heavy malpractice insurance premiums did I ever expect a doctor to say that to me.


The OsteoMyelitis was verified and Doc Khayyat told me it was a simple procedure cut along the top of the head from ear to ear pull the skin down cut out the infected bone and a plastic surgeon would put titanium mesh there and I'd be ok. Except there was still an infection actually inside the back right part of my brain he hoped would shrink with the rocephin.

So, on December 30th, 2010, I had my craniectomy (craniotomy is where they open the skull and brain, craniectomy is where they remove a piece of skull or brain). This was by far the most painful surgery. I was supposed to be released that night but ended up staying over New Year's weekend. The pain was excruciating. But I was kept dosed with percocets and morphine.

As of today, Feb. 9th, 2011, I have been approved for medicaid, which means the 100's of 1000's of dollars I owe will be taken care of. The hospitals pre qualified me under H CAP (I have no idea what that means other than the bills at the hospital are taken care of, not the docs, the radiology, the rehabs, etc JUST the hospitals.)

The infection inside the brain on my right side still is there and I may need another operation. The rest of the infection is totally cleared up.

My only complaints are, at the beginning I should have had better treatment from the EMT's, some of the nurses didn't have to be so degrading and could have emptied my bed urinal in a timely fashion. The trips to the Stat care and the first trip to the ER where my symptoms were not heard and may have prevented all this. But as for needing a nanny state to dictate healthcare, I am extremely pleased with what we have now. I somehow got very lucky and have the best doctors in their fields in the area working on my case. If any changes are needed the funding for meds should be better available and programs made more public through hospitals educating us, the patients.

The only problems with this system the way it is, is, in order to get Medicaid you have to recieve Disability or have an active application/appeal in. The second you don't you lose the Medicaid. So for those capable of working, you have no choice but to get disability or pay the bills until you are bankrupt. Which, disability, is not something at age 43, I want to truly face. But then again my short term memory is pretty much fried, (which like the steroids, is ironic, because I stayed away from drink and drugs to protect my mind..... now I have this fucking infection eating it away.) AND, I think IF we are to have COBRA, then it should be better funded (maybe through nanny care programs that will recieve far more than they can honestly spend). I don't need government telling me my diet soda may cause a fucking stroke or heart attack. I FUCKING HAD THE STROKE BECAUSE I COULDN'T AFFORD THE FUCKING COBRA. It's that plain and simple. I'm sure there are many cases like mine that because the person couldn't afford COBRA, they will go onto medicaid because of the progression of a disease that if it had been caught earlier, turned into something far worse and far more expensive to taxpayers.

So, in the end..... Am I angry? I am angry I have this disease and the crap I have been through because of it. Not to mention, people who would have never talked to me before asking me if I am ok and telling me I look good. And the sadness I see in my mom's and grandmother's eyes at times and the pain I see and hear in friends' voices and e mails.

Am I depressed? YES, I'll admit to thoughts of o'ding on my sleeping pills, but refuse to do so because the God of my understanding, has allowed me another chance of life. IF my mind gets worse or I feel it has.... I WILL WITHOUT DOUBT TAKE THE PILLS. Again, for me it is about QUALITY of life and not Quantity. I have always valued my mind because it is who I have allowed myself to be. Granted it maybe slightly off center and sometimes appear abnormal to others. BUT IT IS WHO I CHOOSE TO BE, IT IS WHAT MAKES ME UNIQUE. And I'll be damned if I lose it, I'd rather be dead in all honesty.

I pray no one EVER has to experience what I have. But we have a great healthcare system that works IF you ask and do what is asked.
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I just love people who use the excuse "I use/do this because I LOVE the feeling/joy/happiness it brings me" and expect you to be ok with that as you watch them destroy their life blindly following. My response is, "I like to put forks in an eletrical socket, just LOVE that feeling, can't ever get enough of it, so will you let me put this copper fork in that electric socket?"

Last edited by pan6467; 02-09-2011 at 09:14 PM.. Reason: there was a very poorly worded sentence that I changed and assorted typos
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Old 02-09-2011, 08:49 PM   #2 (permalink)
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I don't have anything to offer other than I'm glad you're now able to post this. You're still kicking around. That's a good thing.
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Old 02-09-2011, 09:47 PM   #3 (permalink)
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Quote:
Originally Posted by Craven Morehead View Post
I don't have anything to offer other than I'm glad you're now able to post this. You're still kicking around. That's a good thing.
Thank you, I appreciate it, glad to have written it. Now, if just the politicians and beareuacrats hear what I said about no nanny care and more to cover COBRA benefits.... we may be able to truly save lives, and in the end isn't that what healthcare is SUPPOSED to be about. Like I said, Had I been able to afford COBRA, I may not have gone through all this especially as far as I have. Plus, why should an otherwise healthy person, be FORCED to file disability in order to get Medicaid? It makes no sense to me. Let me put back into the tax system and feel like a proud man able to work again. The only True benefit of disability for me is it covers back child support that accrued with interest during this health problem and student loans will not be a problem for a while. And for possible legal reasons (should I be denied and have to file an appeal, to keep my Medicaid) I won't say, I feel I can work.
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I just love people who use the excuse "I use/do this because I LOVE the feeling/joy/happiness it brings me" and expect you to be ok with that as you watch them destroy their life blindly following. My response is, "I like to put forks in an eletrical socket, just LOVE that feeling, can't ever get enough of it, so will you let me put this copper fork in that electric socket?"
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Old 02-10-2011, 05:20 AM   #4 (permalink)
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Geesh, and I thought that my experiences the past few months were bad.

Always ask about the cost of a medication. If the doctor doesn't know, ask if there's a generic alternative. If he tells you to ask the pharmacist, tell him that you'll be calling his office for a different prescription if this one isn't in your price range. If the doctor still plays dumb, at least they'll know you're serious about being broke.

I know it might not make an impact, but you really should consider sending a letter to the ambulance company that picked you up. Just copy-paste the portion related to them from the above thing... let them know that you were treated inhumanely after suffering a stroke...

I have also experienced the "rush-rush get them out the door" of doctors who do not seem interested in treating my problems. They just look me over, maybe listen a little, hand me a piece of paper, then shove me out the door. I have called back the next day and spoken to a nurse at the office afterward, asking for clarification about the treatment and mentioning how distressing it was to have that rushed experience with the doctor. The nurse must have made a note of it this last time, because she knew me the next time I showed up at the office and the doctor took a few extra minutes to explain everything and to make sure I was going to be ok before I left that next visit.
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Last edited by genuinegirly; 02-10-2011 at 05:26 AM..
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Old 02-10-2011, 05:59 AM   #5 (permalink)
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Gosh, don't know what to say. But make sure they clear up the remaining infection stat, okay?

There are many who have been or are in circumstances similar where they don't seek medical assistance for the same reasons as yours. That's the failure of our system and the saddest part is that in the end, the actual cost ends up being so much more than payment for the treatment would have been at the onset.

I'm glad you're going to be okay.
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Old 02-10-2011, 06:06 AM   #6 (permalink)
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damn. that's just horrible. I'm sorry to hear that you had a stroke. I hope you have a speedy recovery both in health and circumstance.
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Old 02-10-2011, 11:54 AM   #7 (permalink)
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I'm with you on health care. Thank you for posting.
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Old 02-10-2011, 06:08 PM   #8 (permalink)
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Something like this could happen to anyone, but there should be a 'free' COBRA that covers the basic, preventative treatments for every American.
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Old 02-10-2011, 07:06 PM   #9 (permalink)
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Interestingly, in Canada, you wouldn't be having this particular discussion. It would have been about struggling with a condition but not about the paperwork nightmare or having to pay for it.

Glad to hear you are still hanging in there.
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Old 02-10-2011, 09:59 PM   #10 (permalink)
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I'm very sorry, you had to go through all this.

Also, here in Finland, in case of emergency the only reason they would consider admitting you to another hospital, would be that they could give you better care. Anything would be done to get a patient the best care they need as soon as possible.
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Old 02-10-2011, 10:40 PM   #11 (permalink)
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Missed you PAN and your avatar. I just thought you had moved on as some people do. Sorry about the hell you've been through. Your EMT experience was inexcusable, and your early rushed diagnosis by the first two doctors was inexcusable as well. I think nurses are overworked and underpaid, so I kind of expect lousy treatment from them.
I'm with you on the COBRA. I've paid it and was greatful to be able to continue my coverage, but didn't like it because it was so expensive. But I had no choice. The people that need COBRA normally can't afford to continue coverage because of a situation similar to yours so it really doesn't make sense and doesn't work for everyone.
Good thoughts your way on your health crisis. Take care and sorry about your son and dad. that sucks
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Old 02-11-2011, 07:09 AM   #12 (permalink)
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Originally Posted by Charlatan View Post
Interestingly, in Canada, you wouldn't be having this particular discussion. It would have been about struggling with a condition but not about the paperwork nightmare or having to pay for it.

Glad to hear you are still hanging in there.
Similarly in England.


My view of U.S. Healthcare is particularly intense on account of my American girlfriend's situation. I may enter in to discussions on healthcare elsewhere.

Here, I want to say thank you for telling what you've told. I've read every word and am rooting for you to make the improvements that Can be made, and to make the adjustments for stuff you're learning to live with better.

I also appreciate you've got a workload of what-can-make-life-worth-living as you refine and maintain continuity of YOU along the lifelong stream of who you have been in your distant past, and how you chose to become in the less distant past, who you've chosen to be in in the more recent past, who you are now, and who you now are, choosing, to become in the future. The God of your Understanding encompasses greater than your moment-to-moments, your day-to-days and your year-to-years ... and greater ...

... than than any further words I can type.

I place a candle for you on the altar of that God, in whom I know you already have faith.
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Old 02-11-2011, 09:54 AM   #13 (permalink)
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IIRC I shared my story a few years ago. But I mine well do a quick recap on my experience with healthcare. I was in college, (broke of course) and my family is fairly poor. So I didn't go to the doctor when I started having terrible seizures (didn't know then). It wasn't till years later that I learned I was getting an odd type of seizure, but I suffered for years where I wanted to kill myself because I didn't get any treatment. I had no idea what was happening to me and they'd come out of the blue. Its a rather horrifying experience not knowing when you'll lose control of your body. I was constantly nauseous, constantly in fear of when the next one would hit (was as often as once a week, and lasted for close to 24 hours...)

I should say I went to the docs a couple times out of pocket initially. But they had no luck figuring it out for several years. And I just didn't have enough money to go to a specialist at the time (especially because I needed to see an ENT and a neurologist many many times before they figured it out).

Last edited by Zeraph; 02-11-2011 at 09:56 AM..
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Old 02-12-2011, 04:09 AM   #14 (permalink)
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Quote:
Originally Posted by ASU2003 View Post
Something like this could happen to anyone, but there should be a 'free' COBRA that covers the basic, preventative treatments for every American.
Quote:
Originally Posted by Charlatan View Post
Interestingly, in Canada, you wouldn't be having this particular discussion. It would have been about struggling with a condition but not about the paperwork nightmare or having to pay for it.

Glad to hear you are still hanging in there.
Quote:
Originally Posted by zenda View Post
Similarly in England.
Hmmmm. I wonder why the US health care system is clogged with patients while other countries don't have that problem. Wherever do all of those patients come from?

Best wishes on your recovery.
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Old 02-12-2011, 05:58 PM   #15 (permalink)
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population of the USA = 300 million
population of Canada = 30 million

I hardly think the limited number of folks crossing the border for medical purposes are "clogging" your system.

Besides the fact that the OP isn't about clogging, it's about bureaucracy in the US system and how inefficient the existing system is.
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Old 02-14-2011, 04:49 AM   #16 (permalink)
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The issue now is becoming, how does one make enough to live on and feel like they are accomplishing something?

I can see why the bureaucracy is set up like it is. If you work, you don't get disability. No disability, no medicaid. If you try and "work under the table" the threat of getting caught and possible criminal fraud charges being held against you, to me isn't worth the risk.

It's like they are trying to see who blinks first. Thankfully, I have family support, but that can and will only last so long. How do others who don't have that support maintain enough to live and eat. Hell, I can't even get food stamps because I live with my mom and step dad. I could feasibly move out, but with no money and the need to have someone put my IV in 2 times a day, makes that more of a pipe dream.

This is a very depressing time indeed, but I still have my mind.
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I just love people who use the excuse "I use/do this because I LOVE the feeling/joy/happiness it brings me" and expect you to be ok with that as you watch them destroy their life blindly following. My response is, "I like to put forks in an eletrical socket, just LOVE that feeling, can't ever get enough of it, so will you let me put this copper fork in that electric socket?"
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Old 02-14-2011, 08:04 AM   #17 (permalink)
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Quote:
Originally Posted by pan6467 View Post
The issue now is becoming, how does one make enough to live on and feel like they are accomplishing something? .....

..... This is a very depressing time indeed, but I still have my mind.
Hi.

I appreciate your point about bureaucracy, that you are not making enough to live on and that at least part of your entitlement to aid is ... dis-entitled on account of your having to live with your family.

Thinking of your posts in this and that other thread, the following occurred to me: You are a longtime and experienced member on this forum. I reckon that you are likely to be well versed in examining life's issues and providing valuable insights and perspectives, thus developing your own strength and supporting that of others, and that all this goes at least some extent toward addressing:
Quote:
and feel like they are accomplishing something
.... that you most definitely have been are accomplishing something Even When you don't feel like you have been; that one may, at certain times of life be doing it less, or even progressively increasingly less, takes away not one jot from the heart and the direction. How you are choosing to steer is eternal, and that is valid and priceless whether moving a mountain or twitching an eyelash.

There are times when we do not feel what we know, yet it is true nonetheless.

In this depressing time, if you gather your knowings and understandings of when you have been clear your mind and understanding are greater than you ... 'knew' at any one time, and that they are necessarily greater than you can know. Our judgements are subject to conjecture and we owe to ourselves the next day so that we may exercise our right to reply.

There are times when our mind might not be working in ways which we feel comfortable and there are times when its output might not be understandable or in alignment with standards we have set yourself. Some of those times are more fun than others, others have been 'lost mind' until understood in the light of tomorrow. 'Searching mind' can sometimes feel like lost mind, think of past puzzles you have tackled. Times you have ground through them, times you have had to go off to do something else for a while then return to find them solving themselves more easily, or at least less difficultly than before.

When, however, the 'puzzle' is a war-zone of enormous physical setbacks, impacted by the emotional intensity of the survival-whilst-disabled and gut-punched with a traumatic and abusive inception of care which would have destroyed someone with less strength of mind - for whilst the event was horrifying enough, it's meaning is a slap in the face to what, even as children, we'd have likely grown up wanting to believe; talkabout being kicked when you're down - you got to have a Health Crisis AND to be the 'bad guy' in the eyes of 'the authorities;' when you are accomplishing the skills of ... becoming one who is, even as you read this, riding adversity bare-back as it bucks and kicks, you are accomplishing great things. You are accomplishing things less obvious to popular benchmarks, but great all the same - I bet you know this - greater, actually, because you've been doing them without the support of external recognition or bail-out packages and it's unlikely there'll be any visible medals pinned to your chest for what you're doing.

"I still have my mind" ... in the face of some of the worse things life can throw at someone. It's a tribute to you, unbeknownst to yourself or when it might be most needed, to have developed this strength. Can you have a sense of accomplishment in this battle, Pan? I can, without hesitation, say you're becoming a role model. I can say your sharing this is helping to turn my spine into BackBone for things I go through and will be going through. Your story is on my lips as I let others know what battles are possible and what warriors there are to fight them. You are carrying much. Can you, knowing all this, bear an additional burden of salute and respect? There is nothing complimentary or lickass about this. Anything less would be an insult, for you are carrying a world on your shoulders, and the respect is yours whether or not others, or you feel it now, or at those most needed times, or simply generally.

Best wishes
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Old 02-15-2011, 06:39 PM   #18 (permalink)
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Well, saw the infectious disease doctor today and there is the lesion in the back right part of my brain that seems to be not getting hit by antibiotics. He says chances are they will have to go in and get a culture. I'm scared. I keep begging the God of my understanding when is enough enough? I am scared I can't take anymore. I just needed to get that off my chest..... thanks.

---------- Post added at 09:39 PM ---------- Previous post was at 07:58 PM ----------

going on to yet another brain surgery.... it'll be #5 since August 28th......... I am losing it. This has become like an addiction in and of itself for me, when I think I am better I am under the knife again. I can't take much more. There's no "it's my choice" there's no "turning it over"..... there is ONLY FEAR.
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Old 02-15-2011, 07:14 PM   #19 (permalink)
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Quote:
Originally Posted by pan6467 View Post
Well, saw the infectious disease doctor today and there is the lesion in the back right part of my brain that seems to be not getting hit by antibiotics. He says chances are they will have to go in and get a culture. I'm scared. I keep begging the God of my understanding when is enough enough? I am scared I can't take anymore. I just needed to get that off my chest..... thanks.
Hi Pan.

I happen to be by my computer at the moment ...



nb ... I'd like a variant of this emoticon, where the reciever does NOT smile. It's not smiling time. You getting it off your chest, and me being here and able to get back to you right now.

Hmmm ... Check this out.

http://en.wikipedia.org/wiki/Footprints_(poem)

In my last post, I indicated that the God of your Understanding is necessarily 'bigger' or 'greater' than you are any one moment of your being. I'm not trying to pump into any specific theology, just drawing attention of the conscious mind's being a tiny, though always feels like everything, part of the whole of our being.

That footsteps poem, IMO, describes one element of that relationship.

Buggered if it'll make you feel any better for reading it, or me any better for recommending it. Think of it as a cross between a marching song to carry you, the warrior, through the darkest night, and Cum Bay Ah by the camp fire.

On second thoughts, forget Cum Bay Ah.

Darkest night. Yeh. "Can I take any more of what I already couldn't take any more of before THIS latest event?" darkest nights. Soddem.

I'm off to bed now ... England = 2:30 in the morning. I'll check in with you when I wake up. Others'll be around before then anyway, I'm sure.

Take care.

---------- Post added at 03:14 AM ---------- Previous post was at 02:40 AM ----------

---------- Post added at 09:39 PM ---------- Previous post was at 07:58 PM ----------

[/COLOR]going on to yet another brain surgery.... it'll be #5 since August 28th......... I am losing it. This has become like an addiction in and of itself for me, when I think I am better I am under the knife again. I can't take much more. There's no "it's my choice" there's no "turning it over"..... there is ONLY FEAR.[/quote]


This IS outside everything you'd grown up to expect. I'm agreeing that you are losing it ... even going so far as to say you have LOST it BY WHICH I MEAN: you're previous ways of being YOU have become out of date suddenly and terribly .... for a while. No choice, no turning over. YOU, passive and stuff happening in you and to you. I am at best only understanding a fraction ... just got your words to go on. I am, though, wanting to push the message to you that where you're at, "Losing it" is the proper response. If you were mumbling niceties and platitudes, I'd think you'd gone a bit psycho.

I, a n00b, only know you from your last few days posts ... so it's not worth much that I tell you I reckon you are dealing with this Solidly and Realistically ... it is the words of those who know you better which must move you most ... but I happen to be the one who's around at the moment, to actively witness, as best I can, as you're getting it off your chest.

You're shit scared and helpless, and have got the sense and true grit and guts to pull that card from the bloody awful hand you've been dealt recently, and to slap that face up on the table and call it the way it is. And I look at you accross the table and know that you are playing it TRUE.

There's the warrior, Pan. Here's where you're excersizing your choice.

I'm too tired to to be sure whether I'm making useful sense ... focus on your own strength ... realise you are probably the strongest one in the house at the moment. don't try to get sympathy and understanding from those whom you KNOW are not able to give it.

This IS your time of darkness. This is where your fire is not blazing. You cannot see it, but the embers are warm ... as if some part of you has covered it with a few ashes to keep the heat in .. and blows occasionally to keep them glowing. "Hey Mom" is not the way to go here - so maintain your energy in and for yourself ... preserve yourself through your evening and then sleep as well as you can.

I wish I were clearer just now.
Take care and see you tomorrow, Pan.
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Old 02-15-2011, 10:41 PM   #20 (permalink)
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thinking about you. take care
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Old 02-16-2011, 06:49 AM   #21 (permalink)
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Good morning, Pan
Take care
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Old 02-16-2011, 10:59 AM   #22 (permalink)
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Quote:
Originally Posted by pan6467 View Post
Well, saw the infectious disease doctor today and there is the lesion in the back right part of my brain that seems to be not getting hit by antibiotics. He says chances are they will have to go in and get a culture. I'm scared. I keep begging the God of my understanding when is enough enough? I am scared I can't take anymore. I just needed to get that off my chest..... thanks.

---------- Post added at 09:39 PM ---------- Previous post was at 07:58 PM ----------

going on to yet another brain surgery.... it'll be #5 since August 28th......... I am losing it. This has become like an addiction in and of itself for me, when I think I am better I am under the knife again. I can't take much more. There's no "it's my choice" there's no "turning it over"..... there is ONLY FEAR.
I'd switch with you if I could. I wouldn't mind dieing a legit death.
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Old 02-16-2011, 11:17 PM   #23 (permalink)
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Hi Pan

All the best to you
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Old 02-18-2011, 10:22 PM   #24 (permalink)
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Hi Pan

Just checking in.
Read and ponder this thread again.
And here is a lit candle at the altar of the God of your Understanding.

Take care
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Old 02-22-2011, 05:48 PM   #25 (permalink)
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Hey Pan.

You're still being thought of

Take care.
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