I have been dealing with a really bad bout of depression lately. Unfortunately I still see ignorant and thoughtless reactions to it.
Just throwing my opinion out there but why can you no longer express emotions that are not sunshine and rainbows? I find most are extremely uncomfortable with pain. Emotional and physical. Why? Pain and hurt are normal emotions we all experience. It is quite absurd to me that human beings are so fearful of it. I don’t understand the fear of reaching out to someone who is hurting at all.
I know of many who experience depression and many of them keep silent. I understand why. People will go out of their way to avoid you and your ‘misery’. Also you’re stigmatized to high hell. Because that’s what people do to others with illness. I’ve been asked what I consider ridiculous questions. Talk to someone? Get help? Blah blah blah. I have had medication resistant depression for 35 years now. In that time frame I’ve talked to psychiatrists, psychologists, therapists and Doctors. Tried every medication that is safe for me. Crisis lines, friends and family. Nothing has ever gotten rid of it permanently.
If you have depression you have my sympathy and understanding. It’s like having a rabid angry monkey on your back all the time. And sometimes modern medicine and therapy does not help.
I have wanted to write about or more fittingly ‘purge’ some feelings I dealt with last year waiting for enbrel to work. I’ll start off with some history first. I started the biologic medication enbrel January of 2013, as we’ve all been told and I expected, it can take 3 months to start to work. March came and left and I still felt no different, my rheumy and I gave it more time. Because lets face it, there’s not an endless bunch of biologics to try and each one should be given the chance to work. June came and went and still nothing. By the time summer came around I was in excruciating pain. I had a hell of a hard time dealing with it, my rheumy would only prescribe naproxen and that pain-killer did a whole lot of sweet tweet all and in my opinion was useless for my pain. Most times I felt like I was being ripped apart from the inside. It was HELL. Laying in bed twisting around in pain nearly losing my mind. Pain on that level I swear turns a human being into a primal monster who only wants it to stop. My fear and anxiety skyrocketed and my instinct to protect myself overwhelmed me. A wounded bear backed into a corner describes in a nutshell how I felt. At that time all I felt was pain, I was not myself at all and I was desperate for relief. Marijuana didn’t help as much as it usually did and I may as well have taken tic tacs instead of ibuprofen, naproxen or Tylenol. I at that moment considered something horrific and at that time it seemed completely rational. I was going to ask my man to see if he could find Heroin, anywhere. I was desperate, screaming and crying in my bed, just wanting the pain to stop. I had no other option in my mind, Dr’s ignored my pleas for pain relief. I was treated like a drug seeker in the ER. My RA was brushed off and I was left to deal with it on my own. You know you’ve hit a low point in your life when you even consider that poison as ‘relief’. I did not want to get high, I needed the pain to stop, now. It never went beyond that request thankfully, afterwards I was alarmed that my mind even went there, but the effects of pain cause irrational thoughts. This I learned only by experiencing it. I got through that moment by smoking a lot of marijuana that particular night, to the point where I passed out. Thankfully.
My enbrel finally started to work in September of last year. My other Dr started me on cymbalta to help with the pain in September also. I was taking tramadol for pain before cymbalta but it was not working as well by then. I still feel pain even with these meds ‘working’. RA really frustrates me because it is not predictable and you cannot plan around it. I never know what each day will bring.
Recently I viewed a story on CNN, where they reported that many heroin users started using that drug for pain relief. My heart sank because I knew why those poor folks had seeked it out. I do not judge them, I feel for them. That is no place a human ever wants to be. Your instincts for self-preservation take over, the pain is your master not you.
It is my deepest hope and wish that some pharmaceutical company creates a pain-killer that works without the addictive side effects of opiates. We all deserve pain relief without the cost to our souls.
Today I heard great news from my Rheumatologist, he said I’m doing great and will be even better as times goes by. I really couldn’t ask for better news. Today was the first time I left his office with a big ole smile on my face, I am genuinely happy. My next appt is in Sept 2014, 9 months from now. I got my scripts renewed for a year and no longer depend on tramadol or naproxen to make it through the week. I weaned myself off of tramadol in October of this year, it was one med that wasn’t covered and if I didn’t need it no sense in paying money I don’t have for it. A great deal of credit goes to my psych Dr who in a moment of brillance prescribed me cymbalta, it has been a lifesaver. My pain was reduced greatly from cymbalta, so much so my need for painkillers was reduced greatly and no patient with rheum disease could say no to one or two less medications to have to choke down everyday. I still take naproxen sometimes, but only as needed and not automatically added to my pillbox for the week.
I have been incredibly lucky, I am well aware of it. Between symptoms, diagnosis and the first treatments I took, the road looked long and grey. Through it all I had presciption coverage and disability benefits to ease the burden of disease, I know not all are that fortunate. I am most grateful for the coverage of very expensive biologics. It would be impossible for me to dream of having a mobile life without them. I’m not back to the life before RA point yet and I am not sure if I will ever get back to how I felt before disease, better than I was is my big goal now. Going from 1-2 good days a week in January to 5-6 good days now is substansial. The feeling I have along with it is monumental. My spirit is not nearly so crushed, my fear of passing away soon has eased. I can think of the future again.
I wish you hope this holiday season. Hold onto hope with every bit of your being.
Yesterday was a voyage into hell, it felt like my legs had taken a shot-gun blast to them. I relented and took tramadol because the pain was difficult to hide, you know it’s bad when you cannot conceal it. The pain was relieved to a bearable level and managed to go out for a drive to a local park for some people watching. A little boy had his cat on a leash, have to say it was amusing because, well, it was a cat on a leash. 😀 Kitty did not cooperate and wanted to do his own thing (of course) its tail was flicking all over the place and the area is au naturel parkland with trees, birds, grass and plenty of room and that 6 ft leash did not cut it. The little boy was patient and tried to lead kitty back to their vehicle, it took awhile to get in that general direction. We were giggling and a couple of women walking up the path were too, what can I say, cat on a leash. 😀
It’s very important to get out and laugh, it felt damn good.
I’ve come up with a new term for Rheumatoid Arthritis, masochistic disease. It isin’t alone in that group either, feel free to throw in your own nightmare disease too. There’s no mistaking it, you KNOW it’s there. I know some other God awful diseases are silent killers too, insidious, lurking and unknown. I am not sure which group is worse? Both are vile.
I have to admit, my mental health has suffered greatly since my diagnosis of Rheumatoid Arthritis. I had battled depression & anxiety before I was diagnosed and now, well, it’s a lot worse. I have terrible bouts of hopelessness and feeling useless to the world which is now my reality. My son moved out May of ’12, I still sometimes feel that loss, I know kids can’t live at home forever but I was hoping for a little longer. My kids are/were my world and them growing up is another challenge I face in this life. It’s not easy to be a parent, kids change your life the moment you have them and it’s a constant evolution as they grow. That being said I don’t handle change well and I consider that a huge flaw in myself, it needs constant work. It honestly feels like I need to become someone completely different, am now a chronically ill mum bordering on empty nester. My daughter still lives with me and I enjoy all the time I can have with her, I know it will be hard when she decides to leave the nest. I hope between now and then I have better coping skills. As you could see by my last couple posts I’m not faring well on the mental health front, I do try my damnedest to not sink so low, it’s my mid-life crisis I guess, enhanced by RA & me feeling pretty useless compared to what I use to do. I took great pride in fixing and doing things on my own, I was self sufficient and tenacious, I got shit done. I feel like a shadow of my former self, I still get stuff done but not as much as I use to. And that irritates the hell out of me. Between being sick, fatigued and brain fogged to the point I forget as quick as the thought entered my head. I end up getting up from my chair and as soon as I stand up I forget why I stood up to begin with. I have to think hard on what I was going to do, it usually comes, eventually.
Mental illness still has plenty of stigma, when I was a teenager terms like anxiety/panic and depression did not exist. There was just something wrong with you and parents, medical professionals, teachers made sure you knew that. It was brutal going to school with these problems haunting me and no one cared, just got labelled as ‘off’ or ‘screwed up’ or my personal favourite, weird. When I got older and had kids it really spiralled out of control, hormones only exasperate mental illness. I finally at 21 yo got to see a mental health professional who helped me understand it was a disease and not a personality flaw. Most people don’t share their mental health issues and I know why, your ‘friends’ will make comments behind your back about how you’re fucked up in the head, if you havent experienced it you just don’t understand. I pray to God to relieve me of this burden that makes me break down so often, it is a disease and so far the meds available have not helped me much or turned me completely psycho, aggressive and just someone who is dangerous to others. antidepressants are powerful medications that work differently on everyone who uses them, I’m just curious as to why none of them are my knight in shining armour.
I’ll keep trying new medications as they become available because I’m too stubborn to give up hope that one day my mind will be eased and I can enjoy life. And stop focusing too much on what I can no longer do.
I’m in a big ole hole thinking too much, thing is what I think about is important, just very distressing. I try very hard not to think about ‘family’ too much, but it’s kinda hard when it’s always being thrown in your face, by tv, social media and the like. Thing is the only family I have are my Mom & my kids, the other people who like to pop in every few years just for something to do I guess, are not my family. They know nothing about me and don’t care to, hell if ‘family’ was so damn important why did no one mention to me or my mother that her brother, my uncle, DIED last year??? I don’t get it, I never hear boo from anyone, my sister was invited to a family reunion this spring. Guess who got invited recently because they FORGOT I existed, if I am an oversight 99% of the time, why the hell antagonize me with oh we just want family to know family, bullshit. Apparently it was not that important that I or my mother to know my uncle had died because no one bothered to let us know. This is not the first time this sort of thing has happened, with my family and my extended family. My ex in-laws are nowhere to be seen for my kids sake, it’s like their Dads & his side of the family just fell off the face of the earth. I’m assuming much here but considering my ex’s skank’s spawn is on his list of FB friends, but his own daughter isn’t. I’m quite sure they’re doing their best as well to forget my kids are even on the earth. Anything ‘family’ turns me off and leaves a nasty taste behind, the last family reunion I went to in 1997 was only because my favourite uncle phoned me personally and asked me to come, he passed away in 2006 I miss him terribly. That one uncle and one other uncle were the only ones who knew who I was and cared to ask about me. No one else wanted me there, go figure. My one sister has made damn sure we were never a part of her or her kids life, they are strangers to me now. She left town when I was 13/14 and I haven’t spoken to her in the last 12 yrs or so. Her choice and that’s fine by me. Why have people in your life that constantly hurt you? no point.
Family is one of those things either you have or you don’t. There is no in between, there’s no repairing of 30+ years of indifference.
All I want is for the emotional pain to stop, the exclusionary feeling to go away and for me to find a place that makes me happy.
Not easy to do when you have no back-up. Everything hurts anymore.