This post is in response to a post Shaun Gibson did on Suicide and Chronic Illnesses. There was some discussion on his FaceBook page, Fibromyalgia and any chronic issue, with regard to this article. I felt I wanted, needed, to say more, but not in a comment box.
I am not asking for, nor expecting, any sympathy as result of my words. I have just read so many other’s journeys in dealing with chronic pain illnesses; I felt it was time for me to add my own to the soup. What I have done, or not, it my burden to bear. The actions may have been wrong, and even stupid, but alas, they are my own. If by reading this you have an overwhelming desire to spread hate, just stop right here. I will simply delete any hateful comment, it will not penetrate who I am, and that will be that. Don’t waste your time or mine with hate. I will also not be converted to any religion, or even any spiritual belief, I have my own and I am happy with where I am spiritually.
I finally visited the orthopedic doctor I have waited three months to see, but really about 7+ years. I filled out all the paperwork, did all they requested online, and brought in my x-ray disc so he could see my knees. I was rather anxious prior to this appointment, since most of my life I have been told my knee pain is in my head. I even had a ‘well respected’ orthopedic surgeon tell me it was all in my head. I have only had one real orthopedic surgeon who saw the problem immediately, fixed it for one knee, and then was able to show me the follow up problems in my other knee. He was magical and quite near a perfect doctor as far as I can tell.
The ortho doc came in, pushed in the disc, and then glanced ever so quickly at my knees. He then proceeded to tell me he really didn’t see a lot wrong. He wants to do an MRI to get a better look. I am cool with this as long as we do an open-sided or ‘donut’ MRI. I just want the pain to go away so I can rejoin life. To say I was a bit disappointed would be an understatement. I was sad, felt like crying on the bus ride home. I will do the MRI, and follow this through, just to see if I can get some sort of relief. I really wish I could go back to my good ortho doc, but he is in Wyoming, and Medicaid will not even consider paying for me to see him.
The rest of the night was hard, very hard, for me. If there was ever a time I felt lost and without hope, this was it. In truth, I have felt rather lost and hopeless for about the last 7 years. I cuddled with my pup, Wizard, and just thought about the silly bus driver who asked me out. Yeah, another story, another time.
I stopped working in 2007 due to my Fibromyalgia and knee pain. My fibro was so bad, I felt like I was going to internal combust at any moment, I never got any sleep, I was in pain all day, and I was making mistakes in my work due to the fibro fog. The last job I had could not afford to insure me since I had a pre-existing condition of Factor V Leiden, a blood clotting disorder. I was without insurance from 2006 till 2014.
At the end of 2007 I was forced to move in with my mother in her two-bedroom apartment. I had desperately tried to find work, anything, so I could stay in my apartment. I was collecting Unemployment, but ever damn penny went for rent, with nothing left over for utilities, and car expenses. I just didn’t have any more money to ride on anymore. Moving in with her was really a blow for me: I have been independent for most of my adult life, and living with someone only upon my choice. I was very happy in my apartment, and had three creatures (see Me & My Crew of Three). I packed up all my life, a very individual and special life, and put it in storage. It is still all there to this day. Mum has been great in paying for the stupid storage ($100 a month) since about 2010, when I officially ran out of Unemployment funds. If not for her, I would have lost lots of very special, impossible to replace, items.
Me and my crew of three live in one bedroom of a two-bedroom apartment, in a senior citizen complex. We can roam around, even sit in the living room, eat in the kitchen (if I want to stand), and I have some furniture in the living room even. Most of our living, especially mine, takes place in this one 9 x 10 room.
The walls are covered with art I have done, and pictures of my past and my (hopefully) future. Scotland pictures cover one entire closet door, a world map and some of my mandelas cover the other door. I have a wonderful frame which houses some very old (as old as me to be very exact) pictures of me and my Poppa, I am a wee babe in them. I say ‘good morning’ to my Poppa each morning, and sometimes look at the pictures longingly, wishing he were here for me to talk to.
When I realized I wasn’t going to be able to go back to work due to my fibro and knee pain, I filed for Social Security Disability (disability). I knew from the beginning I would not be able to handle all the paperwork and hassle which comes from working with the Government, as I had watched a friend who was a better paralegal than I fight her way through this same process. I hired a firm to handle it from the beginning. Four years later, I have two cases working against disability: one is a Federal case, in which my attorney determined I was denied a fair Appeal. He told me they seldom take cases to this Federal level since they are quite time consuming and expensive. I have worked with the Federal Courts before in a non-related case, and I know what a pain in the ass it is. The fee is still the same as it was in the beginning of the journey, so they are not getting any more out of it financially. I checked this part out thoroughly. I even talked to their billing administrator to make sure I was looking at the right Federal Law with regard to contingency fee cases and disability. I am good there.
The second case is a new case listing the same knee stuff, Factor V, and we have added fibro. It was hoped by my attorney this new case would get a new judge, new eyes, and it would be awarded so I could have some income while we waited for the Federal case to be heard. So far, no such luck. It was denied on the first appraisal, which is not astonishing, and so we are in the Appeal stage for this case as well.
This all could probably have been decided a long time ago if I would have been receiving health care. I would have had the documentation disability so strictly goes by to prove my case. Then again, if I would have had the proper health care I might not be in the position I am in today. It wasn’t until The Affordable Health Care Plan (O’Bama Care) went into effect in 2014 that I finally received some sort of health care coverage. What is really stupid is the coverage I received is the same coverage I applied for in 2010 when I realized I would have to file for disability and I couldn’t work: Medicaid. Medicaid is paid for by the State, and my State, good ole’ Nevada, determined I should just suck it up while Mr. Reid partied on Capitol Hill. In the end, I have coverage now, today, although the Department of Social Services has sent me an application (twice the same application in the space of a week!) to re-apply. They tell me in the cover letter if I do not respond, fill out the form to their satisfaction, provide all documents necessary, I can be cancelled by the end of January. Good to know! Obviously I have done all which is required as far as I can determine, so now I wait and see if there will be more asked, or some crazy mess up, which happens more often than not, with any Government office.
Meanwhile, I live off $189 of Food Stamps (aka SNAP benefits). That is it! My mum pays for animal food and supplies, what few toiletries I need, and all other non-grocery items. I cannot even help her in her grocery costs to offset what she buys for me and the crew with Food Stamps, as there is far too little money and groceries only get more expensive. Trust me, I try each month to figure a way, and I seriously do not eat grand by a long shot.
As I mentioned before, I live in a Senior complex. I have tried to make friends a few times, but it is just not going to happen. There was the issue of my age when I first moved in; then there is the gossip; and now I just shy away from most to not get caught in anybody’s web. The gossip is seriously bad here. It is not something I can just not partake in, but still socialize with the residents; I have tried, but talking to the ‘wrong’ person can cause all kinds of problems, including having management on my case. Rumors get started about if I am picking up after Wizard, and then the ball goes from there. The first time this happened, I ended up getting in a manager’s face, being tactfully pissed, and told her never to call me in her office (like a feckin’ child) again! She never did, but since her, we have had at least 5 other managers, they leave almost as soon as they unpack. I have heard now this same thing has happened to others who have dogs and who have talked about or to the ‘wrong’ people. Sometimes I feel like there should be a swing set and sand box out side since I am living around all these stupid children!
I stay in this room, which houses my queen size bed, large dresser, and mostly nothing more. I don’t have the money to downsize the bed, and when I purchased it I had no clue I wasn’t going to be able to live in my bedroom which worked perfectly with the size with room to spare. I have no room for a chair or desk. I have a bed table which holds my laptop, and I move it each day over the bed so I can connect with the World. I am basically relegated to the bed for my time for many reasons. It is too warm in the rest of the apartment since my mum is always cold, even in the Summer. I also cannot sit in my Lazy Boy chair like I used to since it hurts my knee, legs, and back the longer I sit in it. There is my couch, but it is too low for me now, with my knee problem, thus it sits as a very large cat couch. I do get the honor of cleaning off the cat hair though, so I should feel lucky!
I keep so much in, I don’t tell mum hardly any of what I worry and stress about, she would just start nagging (and yes, she seriously nags!). The few times I have told her I feel despondent, depressed, or without hope, she immediately wanted me to seek counseling, go to church with her, and most definitely not to drink my whiskey. I think she has finally discovered no matter how strong I may look or act, I am still just like everyone else and get sad. I also had to make it perfectly clear I am 51 feckin’ years old (that is exactly how it is said) so I can drink my whiskey without any comment needed from her.
I keep in my daily depression and frustration at waiting for disability. I keep in the anger and frustration at only having $189 a month for food; for not having my own transportation, much less my wonderful truck; I keep in my frustration at not having any money to buy even dog shampoo; I keep in my shame and embarrassment when I have to re-apply for aid, use my SNAP card at the grocery store, or ask mum for $1 to ride the stupid Senior bus to the only store I can shop at, Wal-Mart. I keep inside my daily pain, and attempt to even hide the back breaking pops my back does at not specific time. Mum has 20 years on me and I feel I shouldn’t be burdening her with my health and my life. I stifle tears often when I play with Wizard: I promised him when he was little we would walk a lot and go to the park to play. We used to, till about the middle of 2006, then it just got too painful to go up and down the stairs any more than necessary. He is so bored, he loves to be outdoors, and he loves to walk. My heart aches when I think of how limited his life has become, and he is by no means an old dog, but has been put in the lifestyle of one. I keep inside my shame when my mum has to do my laundry, I can’t since we have a central laundry room, and it is physically too painful to do. The only thing I feel I can do is not to push her to do the laundry, if I am running out of clothes, I will opt to hand wash some before I say anything to her. I keep inside my fear of no disability coming through; of something happening to mum in the night, which would immediately put me and my crew on the streets; and…I keep inside all my pain (physical and emotional) and my sad state of affairs.
I try not to worry…about Wizard, my mum, my little bit of financial help, my food stamps, having more animals than allowed in the apartment (immediate eviction if they decided after 7 years to do something about it), and I stay far away from the fears and stress I could incur if I thought about the political issues in our Country. I can get so worked up so fast, and I feel so out of control. At least when I worked I felt I had some control over my life, my animals, and was able to realistically help others. I don’t think people realize when they discuss people who are on Welfare programs as being ‘burdens on society’ how that is really hitting those of us who have no other option, and we are the majority of people on aid. Most of us feel bad enough about ourselves, our circumstances, who we are letting down, that the ignorant and mean words used to tell us we are burdens just adds to our whole bag of shit we are already carrying. Obviously those folks who shout and post mean comments have never HAD to be on Welfare. We HAVE to, or we are in the street, and we all see what is happening to street people…
So…there it is…I do feel depressed, frustrated, angry, and without hope. My dog, Wizard, is my light. I know some may think this is stupid, and generally lacking in my life, but he has brought me more joy and love than any human or organization on the entire planet…no religion, boyfriend, girlfriend, husband, and especially not the government.
This said I have found a place for me, a place where my spirit finds peace, where I can actually talk to my Poppa (deceased), my sister (deceased), and my guide. I can stay in my little cave of a room and center my brain to not focus on all which could go wrong, all which quite possibly may really be hopeless, and only let in those images, ideas, pictures, which I choose. I have insulated myself, this is true, for a good reason I argue. The stress of my health, my knee, my back, is exacerbated 10 fold when I start to let in all the Country’s, World’s, and my own person life problems.
I have to pick my battles very carefully, as I have only very limited ammunition on hand, and no stores in a bunker. I find I very often feel I am fighting this war alone as well. I have a good neurologist who works with me on my fibro, but my primary doctor could care less about me. She does what she has to, but doesn’t even know my current medications she has not prescribed or my most recent condition. When asking my mum for the $6 for fare to ride the ParaTransit bus (a public small bus specifically for disabled and elderly who cannot ride the regular transit bus) just to see a doctor, I don’t feel it is really a necessity unless the doc says so. I guess my ortho doc isn’t too impressed with me either. I will do what he asks as far as the tests, but I need relief soon.
I would seek out the services of a psychotherapist, but I have some problems in this regard. I went through about 4 before I finally found another magical doctor who was able to work with me on some really big issues I was dealing with at the time. She has since retired and moved far away, so I cannot even contact, it just wouldn’t be right, and she might well not even be alive. After not being believed and shuffled all over the place as a child, teen, and as an adult with regard to every damn thing I said, whether it be about knee pain, burning inside, sexual abuse, physical abuse, bullying, and some other really scary shit, I have learned to basically suck it up. My one therapist was able to build a really good relationship of trust with me, and I seriously can’t see opening up to anybody like that again. On the more logistical side of the coin, I would have to come up with multiply $6 fares for the repeated visits, even though the visits would be paid for by Medicaid. Mum is really on a very tight shoe string, so if I can deal, and I have been, I need not burden her with more financial demands.
There it is…long I know, but I have put this off for a very long time. I don’t know what this really accomplished, but I will publish it nonetheless. Again…don’t feel sorry for me, I am a survivor, but even warriors get sad, depressed, frustrated, angry, and loose hope in the battle and sometimes even the war. I am not scared to die, never have been. I have been through too much stuff as a young child to fear death. I actually don’t fear what most people do, and I see no reason to fear what we don’t even know about. I am not going to be taking any pills, hanging myself (this apartment is so badly built, it would fall in on me), or anything else to end my life. I know I need to stay, been told the basics about it so I wouldn’t be troubled any more. I am cool. If something happened to Wizard and my mum though, all bets are off. They are the two reasons I am still here.
Peace & Love