Friday, January 6, 2012

Laughter is the best medicine cause it is free.

I'd like to talk about a major issue in my life right now. It's a downer, so prepare yourself.
So, I'm poor. I know I have said that before but when I say I am poor, I mean we survived last year on less than $6,000 income. Like super poor.
And one would think, "Oh, you're taken care of by the state," but nope.  If you don't have kids and you are poor, you can pretty much go fuck yourself... which apparently I have done by becoming ill while poor.
I have been chronically ill for about 8 years now. Longer really, but it has been steady for 8 years. I used to have a job, and I worked, and I loved working. I would even work for free, if they didn't have money to pay me because working was awesome and fun. But then I got sick and I had to go home from work all the time and had to ask people to cover for me, and my job was such that I couldn't just leave when I needed to... I had to wait for someone else to be there before I could go, so it sucked, and it made many people mad at me, and at the end of the year, I got let go. And the next year, my contract wasn't renewed. And then my day to day jobs stopped because I was making errors of judgment from being on pain pills that I was required to take... and then 4 years ago, I stopped working. I was making it through my days by refusing to eat or drink, because those things made me sick and made me have to go home, and working is hard when you have no food in you.  I know models do it, but they just have to stand there and look pretty... they don't have to keep other people safe and alive and stuff.
And the point of telling you that I am poor is to tell you I have no insurance. I have no medicaid, I ain't got shit... except a bunch of chronic illnesses that like to make me miserable and a moral code that tells me it is wrong to run up bills and not pay them.
Beyond that, I have several diseases, all autoimmune, that don't have cures.  My experiences with doctors has been this:

I am certain there is something actually wrong with me that hasn't been diagnosed, as far as my chronic pain and lessening muscle control, but I think I come off to doctors as a hypochondriac.  I say this because I complain and I complain and they just look at me cross-armed and say "Mmhm." and nothing gets done.
I had one doctor lady stand across from me, when I was pleading that she do some test, test for MS maybe because it runs in my family and I have almost all the symptoms of it, and I was being told "we don't know what is wrong so we aren't going to do any more tests on you," please test me, for the love of God, test me,  and she crossed her arms and her legs and said in a nasty accusatory tone, "Do you WANT to have MS?"
And you know, yeah, I would rather be diagnosed with MS when I have most of the symptoms of it anyway, and actually fucking be treated, than to sit in a room with shitty doctors who treat you like crap because you have problems that they don't have a name for. You get screwed because your symptoms are too hard to figure out and testing costs money and you don't have money, and people subsequently think you are making it all up, but you are in pain all the time and you know this is real.
So, I have tried to get help but all of the agencies say that there isn't enough documentation to prove that I am sick enough. Because when I am feeling my worst, I don't want to go sit in a doctor's office, or ER, for hours to tell them "I feel like shit, I am going to take some narcotics and lie in bed for the rest of the day. " Or "I feel like shit, I am puking and crapping and I can't stop." yelled through the bathroom door of the doctor's office because I don't relish the idea of wearing a diaper out in public. Or "Hi, my intestines are bleeding again. I have ulcers on every mucus membrane of my body. I can't sit up because it hurts so bad. You can't do anything about it because taking steroids all the time is going to kill me... so hi, bye, thanks for writing it down after I sat here miserable for 5 hours. That will be $500 I don't have. Please, make sure you call me every day to stress me about it which will make all of this flare worse."
And because it has been suggested that they can't do anything for me, it seems an exercise in futility to mention it. I don't WANT to spend every second thinking about being sick. I want to ignore it and do whatever I can to bring myself joy (like writing this blarg here, that I love, and interacting with all of you), but in order to get any help from any agency that is in place (disability, voc. rehab, etc), it seems that you can't have a moment of joy in your life, which is about how I feel right now. So, please, I can have help nao?


  1. Awww, I'm really sorry to read this. I can't even imagine how incredibly frustrating it is for you. :(

  2. J. Rose,

    I am so sorry about your chronic illness. If I were a doctor, I would totally run a gazillion tests on you for free. Well, no, not free. Actually, for payment you might have to draw a picture of a themed llama (perhaps flying would be a cute theme for that, or boating as long as llama is wearing a striped shirt) and that would cover your medical testing bills.

    As soon as I am accepted into med school I will let you know (in the meantime, my mail is delivered to me addressed as "Dr. MOV" so if it's good enough for the post office, is it good enough for J. Rose???)

    Dr. MOV

  3. You totally should send those doctors a bag of crap. Literally.

  4. We don't go to the doctor much. Expensive and they usually don't know anything. I hope things improve for you.

  5. Oh J :(

    The only suggestion I have, is that you save all your pennies for as long as you can, then pack yo shit up and get on a plane.

    Convince the Australian immigration officers that we could not survive as a country without you, and get your ass over here asap!

    I don't want to make you feel worse, but when I go to the doctor, it costs me $20, the rest is bulk billed to Medicare which covers every single Australian for free. I have never paid for a test of any kind, nor xrays or hospital stays. The only out of pocket medical expense in Australia is for plastic surgery that is deemed unnecessary.

    In short, your country sucks, move to a better one.

    Australia would be lucky to have you and your spunky husband :)

  6. Send them the bag of crap, but label it, so you can use it as proof or maybe for testing when the time comes around.

  7. Some time in the future...

    JR: Well doc, what do the test results say?
    Doc: It's quite unusual, and potentially devastating in your case...
    JR: I'm allergic to llamas, aren't I?
    Doc: No, I'm afraid it's worse than that. You're severely allergic to *drawings* of llamas. We can't quite understand it...
    JR: But I haven't drawn a llama for months...
    Doc: (interrupting) Drawings of narwhales too. Any single-horned animals really.
    JR: Crap.

    Hope you feel better very soon. You've *got* to find the right doctor!

  8. If anyone wanted to organize a Kickstarter campaign titled "Smuggle JRose into Canada for medical attention so that she can keep drawing the Cheeseblarg and be happy" I would totally be on board.

    I hate that you're having to go through this. I have asthma and no insurance and also don't want the steroids they all seem so fond of in the medical community, which sucks. But yours is like... sucks times forever. For what it's worth, your blarg brings joy to lots of people!

  9. *supermegahuggles* I don't know what to say except our healthcare system sucks some big ol' rocks and it needs to be revamped big time.

  10. Sorry JRose. This post made me sad. I'm sending you lots of good thoughts. If I were a doctor, I'd run every test I could think of on you!

  11. I'm so, so sorry. Somebody with your talent should be rollin' in the Benjamins (I'm too white to say that), and maybe you will be one day. I'm in the poor boat, too, incidentally, and am struggling (and failing) to keep up with the visits and meds that keep me alive and sane. I don't have a solution yet for either of us, but laughter must do SOMETHING for us, right? RIGHT?!??!

  12. Can relate entirely with you on this post. One moment fit and healthy, the next feeling like the living dead...but less animated.

    So sorry you feel like crap at the moment and that doctors don't seem to know squat these days.

    Thinking of you whilst sending you a cyber hug.

  13. I can relate to the chronic illnesses. Sorry things are so crappy right now. I love reading your blarg. Laughter really is the best medicine. Sending you a smile and a hug.

  14. You don't live too far from Canada. Is a move there an option?

  15. Canada is da bomb....but Drs here are also educated idiots. It took 12 years of tests and pain for me to finally just diagnose myself and continue with a ND as a guide, who I pay out of pocket because my government can not tell them what to do so they aren't funded. Being poor sucks large too...but you are real and have real problems others can relate to so thanks for this post.

  16. I guess I'll start by saying hello, I'm a new visitor and I like it very much around here. :)

    I know where you're coming from when you talk about doctors thinking of you as a hypochondriac. I've had a plethora of various illnesses since I was very young and all doctors would do was give me mild pain medication and push me out the door. 10 years down the line and I'm finally starting to get taken seriously, no doubt because I am now living in a different city. Doctors can suck it. I hope things improve for you.

  17. Thank you. All of you. I was really afraid posting this that everyone would run away and never want to talk to me again. I really appreciate all of your kind words and loving support. =S

  18. Oh, sweet Zombie Jesus, lady... I totally can relate with the frustrations you speak of.

    I woke up with a sore neck and right arm about a year ago, which has now degraded into constant pain/pressure/numbness in the head, shoulders, arms and hands, coupled with random diziness, eye issues and overall weakness. I have two MRIs that confirm a Chiari Type 1 Malformation (the back part of my brain is a little over half a centimetre outside my head) and other tests confirm nerve damage in my right hand and arm, but so far no one is taking me very seriously. Sure, since I'm in Canada, I don't have to worry about paying every time I see a doctor, but that also means that the wait times are batshit insane for things like neurologists (4 - 5 months), tests (2 - 3 months), MRIs (up to 8 months) and neurosurgeons (2 years.) The doctor quality is also not much better here (out of the two neurologists I saw, one told me I was surely exagerating the pain since it didn't correspond to anything she knew well, and the other told me to do yoga and take pain killers after telling me twice to be quiet when I was telling him my symptoms.)

    Unlike a broken bone or a tumour, pain is not necessarily visible, so a lot of doctors seem to take the easy route : the old "Get the hell out and take pain killers" approach. I'm seeing a new neurologist at the end of January that comes highly recommended, so hopefully things will start changing for the better on my end.

    Oh! The Ottawa Citizen actually did a series on chronic pain, and it's a pretty interesting read:

    All I can say is that you're in my thoughts, and if you need anything please let me know. Thank you for sharing, and for being wonderful. Oh, and also for providing me with a venting space. ;)


  19. *HUUUUGS* i have nothing helpful to impart, except that i feel your pain, 98% of doctors suck in one way or another, and the 2% that DON'T suck apparently are only available for donald trump & his friends. :(

  20. Some doctors don't seem to want to believe anything their patients say, and the ones that do seem hard to find, especially if you're poor. I hope things improve, and don't forget to laugh!

  21. I can relate to your frustration.. my hubby has been off work for 6 years, milllllions of doctors, wrong diagnosis and finally a doctor who figured it out. Hugs to you, hang in there, hopefully one doctor will take the time to get to the root of your health issues.

  22. Hi! I got here via the bloggess dolls and I'm so glad I found you! Just starting to read everything.

    So very very sorry about your pain. I myself am in frequent pain and the *only* thing that helps me with it is that I know what it is and that if I take certain medicines it usually goes away in a few hours (or days, depending). I was diagnosed with MS almost a year ago and, relatively, it was pretty easy to diagnose. This is what I wanted to tell you (it's early, so I'm only minimally coherent): I only got diagnosed because I specifically went to an MS specialist. I saw other ENT doctors and other general neurologists and because a lot of my symptoms aren't physical (fatigue and dizziness and a kind of indescribable, general pain), they were basically doing anything they could to convince me I didn't have something as serious as MS. (Sounds familiar, right?)

    The first doctor I saw for my dizziness said, "Here, take these diuretics. They'll *most likely* help. And if not, well, I guess you can go the route of seeing neurologists, getting MRI's and lots of testing. I mean...I guess." My favorite was "You could have a very rare kind of migraine condition." "But...I don't really have headaches." "Oh, there are other kinds of migraines." "Really? That's...well...I didn't know that." I told that to my MS specialist (who fucking rocks) and he's all, " *you* think you have migraines?" It was fucking glorious.

    And then he said, "You have MS." And while that was a scary thing to hear, there are actually really good medicines now and I know it might be hard to get those covered, maybe the MS foundation can help you, right? If you do have MS? And while there's no cure, they can help you manage the symptoms (mostly) and they can really help it so that the symptoms don't get worse. Cause that's the scary part of MS.

    In summary, it seems diagnosing MS is an art (I tested negative for the MS spinal tap, but then so do a lot of people) and as FairyGirl says, it really does take only one doctor to figure things out. I have no idea why MS would be such a hot potato with regular neurologists, it just was, in my experience.

    Congrats on all your achievements and I really want this to be the year of JRose. I do. I shall peruse your Etsy page soon (gotta get the kids off to school first...lame). xoxo

  23. I just found your Blarg tonight from the link on The Bloggess (whom I just found last week- I must live under a rock). Anyway, I will be building a line for a personalized llama into my next paycheck budget. You are hysterical! I am a nurse now (long story), and reading your story made me so angry about what a mess our healthcare delivery system is these days! IAnd when you describe the doctors I can just picture them...and I want to slap them. And then make them experience your symptoms for just one day and be treated with contempt instead of professional medical care (by which I mean medical care performed by people that act with some professionalism instead of egotism. I would be your personal nurse, if I could. Keep your chin up, and your fingers on the keyboard. Thanks!

  24. I'm so sorry this is happening to you. I won't be run off! love you too much. being a nurse and NOT a doctor, I can't do tests for you, but can sympathize cuz Dr's can be VERY frustrating...and they don't know everything (even tho some think they do) and some of them throw drugs at people hoping one of them will trigger the right reaction so they can make a "diagnosis". But I agree w/ Penelope, go to an MS specialist asking to "rule out" (R/O) MS. a doctor is only a person after all, and people pretty much get interested and really learn in detail about a few things in life. Just b/c a dr is a neurologist, doesn't mean they really know a lot about MS, they may be eff'n geniuses about seizure disorders and/or parkinson's, but all they know about MS is that "it's bad, m'kay..." you know? *hugs* I hope you see a light at the end of the tunnel...we're all your little fan club. :)


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