Chronicles of Life with Multiple Sclerosis
Despite having submitted my disability paperwork (which THEY told me would take 90 days to process), having absolutely no income because of this shitty illness and because my old job didn’t pay into disability long enough and If I make a single dollar above the poverty level I lose everything… SSI, health care, everything… this is my typical day with Sallie Mae. Clearly they are SO sorry to hear about my disability.
If I mute the phone I miss calls from docs with openings, pharmacies calling to tell me I need 3 mo prescriptions, and potential studies that might help me make a few bucks… if I leave the ringer on? I have an anxiety attack because the phone rings every five seconds.
This is EVERY FUCKING DAY. Yesterday I accidentally opted for a panic attack while hoping my doc would call with an opening. oops.
I won’t even mention how that stress affects me. I will mention how I answer, tell them I’ve submitted the paperwork and am waiting, they say they’ll hold the calls, and an hour later I get another call.
How is this not harassment?!
Since Jan I’ve felt like I’ve had an ear infection in my left ear. Sometimes it’s crazy painful, other times is ringing. But it’s never fully gone away. I thought it was MS or Copaxone related. So I talked to my neuro about it. He said MS doesn’t effect your ear and no known cases of Copaxone causing ear issues. So I’d have to go to my primary to get a referral to an ear, noise & throat specialist. Why he couldn’t refer me… Make my life a little easier…make it take less time to find out what’s wrong with my ear… Your guess is a good as mine. So I finally go to see the ENT today. He says my ears are perfect. Then he asks a few questions that he said I’d probably laugh at. Do I chew gum? Yeah, I threw out my gum seconds before he walked in the door. Do I chew ice? Nope. Do I grind my teeth? No. that’s like nails on a chalk board to me.ewww!! And the one he said I’d laugh at: have you been stressed a lot since Jan? Haha! I’ve been diagnosed with MS, I have a 2 and 3 yo going through the “no”s and having a hard time sharing. I’m trying to refi my house and right when I’m about to finish, they up and sell my mortgage, so I start again. Yeah, I’d say there is a little bit of stress going on. He says I have something similar to TMJ and it is completely stress related. So, nothing and everything to do with MS. Stressed out about my MS, but it’s not something that is directly caused by MS. Now I have to take 3 Advil 3 times a day, no gum, no hard, crunchy foods for 2 Weeks. I’m also trying to quit smoking. No stress there! Lol! I have to figure out a way to not stress out so much/at all. We’ll see how that goes! I also feel as though I can’t hear as well out of my left ear, so I have to go back next week for a hearing test. Good times!
Dear God. I think you’re incredible. You’re quitting smoking on top of all that? :::fallsover::: that I bow down to your strength.
I’m feeling so weak right now… Too much stress, I hurt people I never wanted to hurt and I am so tired, I have the feeling my legs can’t support me anymore.
*hugs* wish I didn’t understand as well as I think i do.
You know that full body ache that makes you writhe around because just laying still makes it feel more concentrated? I’m laying here fidgeting. I can feel every muscle, bone, joint, tendon in my body right now and they ache intensely. Its spread to my whole body when earlier it was just my back. I don’t get this type of pain that often, more electrocution like feelings all over my body. I had a busy weekend, so I figured the fatigue would be pretty bad today, which it was, but Its strange because for once I had very little vision graying. Almost none. That is the almost daily indicator MS sends me to “shut it down” . Not today I guess.. today this body ache is everywhere and in the last few hours its gotten really bad (and I have been told by many that my pain tolerance is pretty darn high). Its half small contractions in the muscles and half just a solid ache everywhere. My fingers hurt. My legs hurt. My back is throbbing. Way worse than the last few times this has happened. All I have to take for it is Advil. heh. That is not really helpful though I did take it. Blah. I guess there isn’t any purpose to this post but to vent. I tried to spend the day resting so I could recover from the weekend (sounds like I was wild and crazy but really I was just cat sitting heh). Instead of preventing further craptasticness I’ve gotten worse. I can’t afford to have another day with absolutely no productivity at all. I have more SSI forms, insurance companies to call, etc etc.. but if this keeps getting worse I’m never going to sleep and I’ll just continue to fall behind, get stressed about it, push myself too hard, and end up right back where I am at the moment. Failboat. Thanks MS, for never letting me forget. hah.
After reading some other posts on tumblr that deal with this issue I started word vomiting a bit since this is an issue I’m extremely passionate about. Please bear with me through this rant. I really do feel its incredibly important.
Its a troubling norm that symptoms are assumed to be only psychological or physical. I don’t believe in the generally assumed mind body separation. Its all connected and physical symptoms lead to psychological issues and vice versa. I think its a disservice to so many of us dealing with new diagnoses (and old ones!) trying to understand how this does, did, and will effect us to place our experiences in boxes that you decide are valid or invalid to you as a doctor. We are often told its ‘just a mental health issue’, as though those issues are invalid, and non medical, and what we feel happening to our own bodies is thus only in our imagination. Then to hear from a mental health professional that it ‘sounds like a medical issue that your neurologist/gp etc should deal with’. The attitude that these things are too complex for communication between health professionals is insulting.
I still deal with this today, despite multiple bouts of optic neuritis, some scary looking MRIs, extreme fatigue on a daily basis, losing feeling in a leg here and there, and experiencing muscle twitches that, though lucky for me they are not the most obvious, leave me unbalanced and afraid to go out for fear that I will seem strange or get labeled some sort of drug addict. Excuse the run on sentences but my strong response has me ignoring grammatical correctness. As a patient, I would appreciate a less flippant reply from doctors than ‘well maybe your mood is making this happen’ said with a tone that implies old school ideas of crazy, insane, or women’s hysteria. Depression and Anxiety are medical issues themselves and should be treated as such. When you diagnosis me with a chronic illness, one that has likely been progressing for years, you cannot continue to ignore the impact of those progressing issues, and those past years, on my well-being both mentally AND physically. If my anxiety seems to be an issue, I ask you to deal with strange symptoms for years, followed by a serious diagnosis like MS (that helps you understand some past experiences and scares the crap out of you at the same time) and then watch your health continue to decline while learning to deal with treatment options that alter your life like daily injections. Add to that attempting to understand your symptoms by reading online since the doctor is less than receptive, implies you’re ‘just’ dealing with anxiety and depression, and resents any education you might have that has you asking questions about research or saying anything other than ‘oh yes doctor what do I do?’. If that’s not a reasonable anxiety inducer then why not add to that the financial burden that a diagnosis like MS or any other chronic illness has on you, add health care issues (especially in the US), those dreams and hopes that you are forced to alter due to the diagnosis… Is that sufficient for you? I think a steady dose of anxiety and depression is pretty much unavoidable. Moreover, the ‘preexisting’ mental health issues seem to continuously serve as an excuse for doctors to ignore health complaints in a way that leaves many of us diagnosed much later than we should be. Its wrong and its, in my opinion, a very serious problem that should be considered malpractice.
From a different perspective, as a social scientist rather than a patient, I consistently see the way that academic fields are used to divide us. Academics still thrive, especially in the hard sciences, on Descartes ‘Dualism’ in its most superficial extrapolation (I could go on here but I’ll save it for another entry someday heh). Those of us working in the social sciences tend to see this in action more often than not, though academia will claim to be trending away from this. The truth is, despite claims of trending towards holistic views, we most definitely haven’t gotten there. Neurologists, psychologists, psychiatrists, general practitioners, all have little communication with each other as fields, and in many cases as practitioners. I implore those in mental health fields, medical services (be it doctors nurses etc), social scientists, and biological science researchers, to stop and think about this separation they are making and how it impacts their patients. I’m compelled to call on several studies that have shown the correlation between adverse childhood experiences, amounts of stress during childhood, and diagnoses of autoimmune disorders later in life. The connection is strong. The direction of stress research in general these days has shown strong correlations between the social and emotional realities of life and rates of morbidity. Social epidemiology has provided us with a wealth of research that identifies the connection between the social/cultural/physical world and health outcomes. Its undeniable! When we we get our heads out of our collective bums and start looking around? Physical and mental health are connected. I’m unsure how much more research there needs to be for health fields to stop existing in an esoteric, egotistical vacuum and start working together and taking each other seriously. More importantly how much more research it will take for them to take seriously the people they have pledged to serve! (one example of research on childhood stress & autoimmune disorders http://www.psychosomaticmedicine.org/content/71/2/243.abstract)
As a patient AND a researcher, I beg of you practitioners out there: take your patients more seriously! Do not divide their complaints between the physical and mental and assume you only have to acknowledge one or the other. Do not discount a physical issue because someone has experienced a mental health issue in the past. Please stop and realize what we have all been living with to get to a point at which we seek medical help and what your diagnosis means for our future. Please acknowledge how that diagnosis alone will impact our well being physically and mentally. Review the emerging research on the connection between the physical environment, stress, life events, mental health, and physical health outcomes. I can only speak for myself, but I find it unimaginable that doctors can separate mental health when dealing with diagnoses of chronic illnesses of any sort. The psychological is intertwined with the physical in an inseparable way. Please lets start to acknowledge this and start listening to each other, patients and practitioners alike.
If you aren’t thinking about un-following or throwing eggs at me, thanks for reading. I’ll get off my soap box now. I welcome any comments, experiences, really anything you’d like to share in response.