Hello all. I am glad to finally have found this site and pray that I may find some help and compassion here. You will see on my second post part of my history in an answer to someones question about Fentanyl. I apologize if I ramble or am redundant and for my lengthy post, I can't type well or sit for long periods so I have to start and stop and everything I write so upsets me that I doubt it will flow smoothly--but I am sure you can relate, plus I get dyslexic from the fatigue at times. If you can stand to read thru it, I welcome any replies or opinions.
I do not believe in Suicide but I am, 10 years later, at my wits end and can't go through this lack of life and state of minimal, meaningless "existence" much longer.In spite of my deep spiritual heart and my trying to always think positive and believe that positive change will come, but as I get sicker and weaker and see no light at the end of the tunnel and the clouds coming in and getting darker and darker...I am now starting to wonder when things will get better-if ever- and feel extremely sad and hopeless. While anti-depressants have their place and helped me a long time ago when not in vogue to use them, and while I was only on them for less then a year , at that time they were a blessing. At this time, I feel they will push me further into the darkness as they didn't help before when I was more positive, having tried several, and they will not get me back to work, or bring me my friends back or give me family support and frankly I can't stand one more pill chemically altering my personality. As well, it would be another financial stress as the drug companies are now not sampling and instead giving discount coupons and I am on so many meds that I often have to decide between food and doctors visits co-pays plus the meds cost, since many aren't covered by the insurance company and with Medicare part D , it's hard to get help from the drug companies anymore. Because I make just above poverty, I do not qualify for any help with medicaid, food, utilites, etc--because I make anywhere from $50 to $500 a month too much, depending on the program.As prices soared since 2007 and the disabilty has sayd the same or SSD went up 5% but the insurance went up over 100%, I fall further and further behind and live frugally and do with out so much as refuse to use my credit cards, unlesss I have to, and in spite of having good credit, if I do use them I allow only a total of $200 at any time - unless it's something I can pay for in full within 3 payments if I MUST have it -like a home repair. I don't spend it on fashion,going out, taking a vacation because again it adds to the financial stress that I already have from the never ending doctor/specialist appointments. I know folks in their 90's that don't go to as many docs as I do. Now, with increasing medical issues, I get paralyzed when I have to make an appointment for a new doc because I am absolutely burned out with all of it and frankly can't handle one more *#%$@ diagnosis.
My medical experience was pure hell and had I not lived it-- and would here my story, I would think it's a very embellished drama because no doctor would be so horrible and get away with it & no patent would have suffered what I did. But it was hell and the doc that damaged me at 38 and stole my life, is a butcher and for all I went through, all the lies, abuse, wrong surgery, screw ups in the ER (doing the wrong surgery, leaving the OR and letting a resident finish the wrong procedure and closing while I I bled into my back causing spinal cord compression, etc- it would take a book to write all that occurred) and then the post operative abuse, the need for emergency surgery, again done wrong and not completed, etc, etc, etc,fraud, libel, slander by the doctor to cover his butt while he changed the medical records, and on & 0n...
(He still practices and is very well known, very well connected and very powerful, etc--Legally speaking, I should be a multi-gajillionaire--but not only did I not understand law, I had no advocate and meanwhile I was desperately fighting to learn to walk and to do anything NOT to land on disability and to get my life back on track. Sadly, that was not the case. Suffice to say, I had an unsuccessful attempt to return to work and at 38 my life was stolen from me--and no was accountable--but ten years later,at 48, I still have to answer for the judgment of those who do not have a clue of all I have been through and judge me because of my extensive pain meds--even though I went through my 1st back surgery (done properly in 1985) drug free-but now I am on serious narcotics which I hate but need to have minimal ability.)We tried to go off the narcotics but the pain is so severe, I have no choice and so much damage has happened to my spine I am ineligable for many options available to others...so I hope that eventually technology will have an answer for me but so far there is nothing I qualify for at this time but the narcotics. And while I don't like them, they give me some function and I appreciate that the doctor is willing to prescribe them.He makes all his patients sign an opiate agreement which is fine , not an issue for me because I think it could save someones life if they abuse drugs whether innocently or intentionally.
The doctor didn't have to answer to me, my doc, the state, the hospital--no one but I am still having to defend "my drug use" while I have never abused any meds, have never run out of them early and have never "drug-seeked" and frankly narcotics and I don't like each other! In fact I have been given pain meds when I had to go to the ER and explained I didn't need them since I had that drug for break through pain, or told them ALL my meds and feel I didn't need more pain killers when I have a combined total of 420 a month of Rx pills for pain (not including samples) - but I find either the docs don't listen or they judge you as an addict- not much in between.
On a positive note,I did learn to walk- though I can only go one speed, and every step hurts, every movement hurts,I can't run -not even to save my life - so of the "man with the ax " were after me...well--he'd win!!( I still try to have some humor as I still think it's the best medicine, but reality is neither funny nor happy- and the future looks dim no matter how positive I try to be)
I am sleep deprived from pain in spite of the meds, and the side effects are horrific for me. While I tried to resist the drugs, because of the 14 days of spinal cord compression (since the doctor ignored me as I lay in bed unable to move, my body on fire,no way to get to an ER unless they kicked the door down and I feared for my house and my pets so I layed in bed, calling the surgeon to explain the post-op pain was 1000 times worse than the pre-op pain, only to be told " I don't know what you did, but I don't make mistakes" and then noting in my records that I was exhibiting not only drug seeking behavior but withdrawl symptoms, which was interesting since I was given Benadryl, post op, for pain, and zero narcotics!
When he finally saw me to remove the staples, which he did brutally, as I cried from pain (I have an incredibly high pain tolerance btw). I broke into a sweat, was shaking and crying and finally they called for an MRI which showed a large pool of blood at the base of my spine causing the spinal cord to be compressed. He said I needed emergency surgery but "Didn't feel up to it right now, so I was sent home in excruciating pain, unable to walk, unable to sit on a toilet, etc...and had to wait 3 more days for his holiness to grace me with another botched surgery. He lied to my primary and never mentioned the hematoma and spinal cord compression and said I "Was unhappy with my scar so he did a scar revision). When I saw my primary and told her all of the above, she said she never heard of the hematoma or the emergency surgery, flipped thru the chart and showed me the "scar revision" letter --t though he billed the insurance company for "emergency surgery and a second unfinished Laminectomy in 2 weeks-NOT the surgery I was to have either times). I had the MRI's so my primary had a private read and saw that he lied and was livid, but powerless against the surgery.
DSo here I am 10 years later in great pain, with 9 years on MSCotin 60 mg 3x's a day, Vicoprofen 4x's a day(was with tylenol but I didn't want to end up on the liver transplant list after taking it for 6 years at 2600 mg a day), Valium 10mg 3x's a day, Ibuprofen 800mg-4x's a day, Rozerum/Lunesta/Ambien for sleep(what ever & when ever I can get sampled because I am on too many meds and can't afford to buy any of them regurlarly) and Miralax or, or Amitiza if sampled, for the severe constipation --which against the narcotics is more poison than help. I have been thru the Fentanyl,Nuerotin, Lyrica, Paxil,etc.,etc., etc...and the above is where I am now and while at times I wonder why I take so many drugs to still be in such pain that I am sleep deprived and have so between the pain and fatigue I have very little stamina and can barely cope with basic life things and have very, very limited energy. When I worked 80 hours a week , my life was always in order, as was my house , etc-- now the littlest thing is like trying to move a mountain. I am also on several other medications for non pain health issues.
I feel that what the pain and fatigue doesn't steal from my life, the drugs do. I don't feel I live - I feel I exist and barely at that. I'm not one for self pity but I can't fake the rah-rah anymore and feel overwhelming physical, mental and emotional exhaustion. We all know one feeds into the other, but I feel this site may be a ray of hope for me since at least folks on this site can relate and I hoping there will someone who can offer some words of hope or share their experience and help me via what they have been through.
I have no family support. I had some help from my Mom but she's 84 now and losing her memory and is almost non ambulatory so I try to help her--which is a joke really as I can't even help myself. But I love her and worry about her and while my house is tiny and not conducive to sharing, she will end up here as I will never allow her to be in a nursing home and as I mentioned there is no "family", but she was always there for us so I feel I should be there for her, and while it will be difficult on many levels, it's no sacrifice when you love someone, like I love her.
Friends all fade away because not only am I limited but they don't want to feel obligated. So they can call to discuss their problems ( which are "problems" I'd LOVE to have, but can't come by to visit, or help me by taking me with them when they go to the market, or invite me to join them for a movie....the one or 2 I have from childhood live on the opposite coast and don't keep in touch much-I know they care, but they don't "get it" on any level because they are healthy and they don't see me now so they don't know all I go through and our 4-6 calls a year are limited and no one wants to "hear it" because it "makes them feel limited or helpless"...when they don't realize how much even listening and compassion could mean to me and don't get that I can't "chat" for hours on the computer. This doesn't upset me like the local friends all over 25-30 year friendships that have all faded away since I am not the fun person I use to be and again, they don't want to feel obligated to help me, so unless it's about them, they are absent. I finally stopped last year these "phone friendships" because I had so little energy or my hands/legs would go numb & my back would flare up spending hours on the phone wasting the little energy I had when it wasn't even a 2 way street...just them venting about trivial "problems"-like having a car and insurance from their parents and now having to pay $30 a month towards the car insurance...is that a problem to have a 2 year old car for $30 a month??? I wish I had such problems!!
So I feel, on top of all of this abandoned, isolated and dismissed. To validate my "existence" I try to do a good deed every day. But my family is my old sick dog and my old sick Mom and if/when I lose either of them, I fear it will further push me into the darkness.
I have always been a very strong believer in the power of positive thinking. I sought private counseling when I could afford it early in this trauma, and I tried to put on a brave and encouraging front to others I knew who were sick or disabled, whatever the reason. I was always available to anyone that needed help and no matter how little I had to give, I always had enough to share --whatever that meant.
With time, I got other illnesses that I strongly believe came from the drugs, not all, but most of them of them. I am exasperated by drug seekers who see me in pain, like when trying to carry a small bag of groceries, or being unable to stand, or limping when my legs get to weak to walk more, and they don't offer help or ask my name, just why I am limping, in pain, etc and then the ever classic: "so what are you on?" (These are healthy folks looking for a drug connection-something I don't do and "friends" I don't need). I am tired of trying to do things right and doctors not having time to listen, while I watch the drug abusers get away with non -compliance, selling of the RX drugs, and being masters of manipulation.
I am tired of having to defend my situation to docs that don't know the story and judge me for what I take but never bother to ask me how I feel about the drugs, how I use them, etc...but treat me like a junky--and I am not even asking for narcotics or any meds (this just happened with a GI doc that I went to for help with the constipation since the narcotics work against the anti-constipation meds). I can't keep explaining or apologizing for what the buthcher surgeon did to me and got away with and continues to abuse others. Maybe he earned his good reputation from former days, but now he should not be allowed to even practice for what he has done to me and others as I have learned over the years. But it's not about right/wrong-it's who you know and the $ and power you have. Had this been a new doc just starting his career -it would have been over for all that was done- not just the malpractice but the fraud, etc.
One doc who was part of my story saw me once and cried because he knew all that happened but couldn't help me by going against the doc because he "would be blacklisted from practicing on the East Coast and had 500K in student loans"-he was sincerely sorry and I knew he was both compassionate and remorseful even though none of it was his fault.Even the anesthesiologist yelled at the surgeon because my spinal anesthesia was "taking too long" for the surgeon so he told the Anesthesiologist to "just put her under general, I need to get going" and the Anesthesiologist yelled at him because he told the surgeon that "he practices medicine legally, so just be patient, it takes time for the body to go totally numb and she didn't consent for General"...it's just too amazing a story. I had put it aside emotionally even though the pain is a daily reminder-but I thought he retired 5 years ago and learned a few months ago he was still practicing and I think that caused like a PTSD reaction in me.
I have put up a really good fight and in praise of myself have done a lot when physical rehab gave up on me, I forced myself to continue what I had learned and to walk -even if I had to take baby steps, and fought hard and get a good positive attitude--though in retrospect I think fear was also a great motivator as I lay paralyzed for a night in the hospital the second time around and never wanted to end up paralyzed permanently. Plus I didn't want to be where I am today as I always thrived on working.
I am feeling very hopeless of late and very depressed. I could always figure a way out of problems in my life but for the first time I am feeling hopeless. I will not bring harm to myself as I do not believe in Suicide but everyday I feel sadder and my coping skills are almost nil anymore and I don't know how to go on this way and I feel no one hears me or understands, or even cares for that matter. Folks who I would think would never hurt me or let me down have and even while I am in a bad place, I still have compassion for others but see no empathy or compassion for me or my situation.
I can't expect others who have not walked in my shoes to understand--but healthy or ill, I have always had compassion for others less fortunate then myself--even now, in this dark time.
As I said to my Mom, even the best swimmer gets tired of treading water.....
If you actually read this rant, I thank you for taking the time, for caring and for any thing you can suggest that you may feel could help me.
Fellow suffers-take care and thanks again. I hope what ever you suffer from that you have someone by your side and wish for better days ahead for all of you/us.
God Bless and thanks for listening...