Hi! My blog is about chronic illness.. but mostly about my trials and tribulations with Multiple sclerosis (all multiple of them… hah.. also its about me making bad jokes to get by) There are lots of us here.. all with really unique perspectives and symptoms (since thats how MS works). Anyway, Send me a note if you want to talk. I’m fatigue central these days so if I’m slow to respond don’t be offended.. I promise I’ll do my best to answer fast, as fast as I can get outta bed at the moment.
Some different kind of CRP specifically pertaining to Lyme’s Disease
Basically, here’s what they’re testing me for: Lupus, other autoimmune diseases, ankylosing spondylitis, and Lyme’s disease.
Cross your fingers, pray, or sacrifice a virgin under the full moon for me to finally get an answer.
Yep. I’m on my way to another (#4 for me) round of this post diagnosis. New MS drugs and their side effects. heh. if I count prior to diagnosis.. we won’t even go there.. thing is? it sucks EVERY TIME no matter what. Crossing my fingers for you. Would sacrafice a virgin but my tortoise laid an egg a while back and well.. I’m 32 years old with no friends (if I was a virgin at this point I’d be even more sad for myself heh).. so can’t help ya there ;)
I haven’t really felt the need to go on tumblr with all the shit happening right now but here we go - I promise I’ll be back eventually and thank you to my followers who haven’t unfollowed me over this stupid shit :)
I am almost 100% sure I have hyperthyrodisim thanks to rebif…I have all the symptoms and my blood work came back off the other day with my thyroid anyhow.
I got denied AGAIN for disability - I go back to work next friday but I work as a CNA who gets no breaks and never gets to sit down for 8 hrs a day and now 32 hrs a week - how is that going to work? I have heat sensitivity and my job is 90 at all times because of the elderly and air conditioning is broke.
My 2nd denial letter told me they used my age, education etc against me…thanks for blantly saying you have discriminated me AND my disease again. I went to college for a fucking year…that didn’t give me any advantage for a new job assholes. ECONOMY sucks and no one is hiring and it’s also going to be hard to find a new job when state denies you insurance - and god only knows what the new employer would say with my health issues and possible callouts.
I’m so fucking livid at everyone and everything - I just want a simple life. For the state to tell me my disease isn’t disabling even though I have trouble walking, numbness, tingling etc I can still find work pisses me off. I worked hard for my money and IF I feel like I need disability to get by in life than give me the shit I earned. I’m not fucking with the system - I’ve been out of work for a year and no income whatsoever. My mom has been paying for everything and it’s shitty because I NEVER have help with my bills - I’m the one that has to help my mom with a lot of the bills because I make more than she does.
This is me. Then doc wonders if its because the meds I’m on to fight fatigue are making it worse.. says to stop taking it.. and then I don’t move for days. Oh then they realize I’m allergic to my MS meds so that might be part of it.. and then I start over.. in the end? I can’t help but hate people that ignore/trivialize the fatigue. They are lucky or ignorant. the end.
No, though, you really can’t. There are some things you CAN’T have legitimate opinions, even if you TRY. If you know nothing about it, if it’s not something you can understand or learn, then you just really can’t have an opinion on it.
My dad mostly keeps quiet, so he’s not as bad as my mom can be, because mom always has something to say, but his “opinions” are stronger, and meaner, and they are about things he cannot understand and he doesn’t even try to.
He’s talking to me tonight because he’s in a bad mood (stressed I guess because now he has to take on all the lifting responsibilities with my sister because my mom broke her tailbone, because now no one else in the house can do any of that, which can be pretty stressful and inconveniencing) about things that have to do with my body, and my illness, and my disabilities, and how I deal with it all. And so I finally just say as calmly as I can because I’m hurt and annoyed and I’m angry and I don’t want to go off on him “You know, you can’t really have an opinion unless your in my body, in my position.”
Of course though, everyone, THINKS they’re entitled to their opinion on everything. And on most things, you’re entitled to your opinion. But not everything, not this, not me, because I didn’t ask you, and you’re not me. At my age, you were lucky enough to be well enough to be treating your body like shit being a wild, redneck party boy in college, and have it STILL function for you come the next day, Dad. You got away from that one horse town, and your family (and though I know my father had his own struggles, they weren’t with his family, and I don’t think his family knew, and I can’t imagine his family did any of the things that mine now does to make this place a living hell, but even if they DID… he got to get out…) and you got to live life. You have stories to tell, you had friends, you learned to drive, and you went to college, you met my mother, you had jobs, and moved all over the country, and had jobs, and traveled the world, you DID things, more than a lot of people will ever do, and especially more than people like me can ever hope for, because right now… I’m just hoping I can ever further my education, ever hold a job, ever support myself. I can’t have dreams that big anymore, so you can’t relate to me. At eighteen, my life has screeched to a sudden halt, nothing is happening at all, and I have nothing, because I’m that sick, and you still are able to hold a job, walk long distances without aid (or stand long periods without fainting), you’ve never had to use a cane, crutches maybe for a short period of time with a brace on a limb after surgery or something, but nothing so humiliating as a cane which people associate with only old people using and even YOU and MOM make fun of me and torture me for, and you can adjust your sleep schedule as needed without meds (no nodding off in random places because you didn’t get quite enough sleep, or sleeping for 18 hours straight because you went to bed early), and things like that, that I can’t do. And that doesn’t even begin to cover the long, long list of things you can’t begin to understand, the things you’ve never experienced, the differences between you and me. But you’re telling ME that you understand enough to tell ME how to handle things?
Even NOW you have a body that functions probably better than mine. You whine about aches and pains and say “you know what it’s like and sometimes you have to do things you don’t want to even when you don’t feel good”, but then that shows just the extent of how little you understand, because it’s more than not feeling good. You’re 50, and so you’re gonna feel a little rough, since you’ve never paid wonderful attention to maintaining your health anyway. But I’m 18 and I did work really hard to keep my body healthy, so there is something wrong when I’m feeling this way. I’m not supposed to. And it’s more wrong than you apparently realize, and it’s obviously NOTHING you can understand.
You cannot have an opinion on how I handle my situation, because you have never experienced anything CLOSE to what I am going through. You perhaps use your experience of having had painful injuries in the past to relate or something, but in the end, they did surgery, and you were fixed. From what I can tell, no one intends to do surgery on my back, and even if they did, it’s not that simple. It doesn’t mean it’s fixed. And we still don’t know what’s wrong with all my joints, or why I’m so sick, or what causes a lot of my pain. What pain we can identify, no one can do much for yet, or they won’t. With your surgeries you were given stronger painkillers, loads of them to deal, and I’m given nothing that is strong enough to touch anything, given the severity of my pain and injuries, because I’m young and people are afraid. (I read everyday at least one more blog about someone having been diagnosed with a disc issue or who has one, and getting or who has a narcotic script to deal with it… I’ve never abused drugs, there is no legitimate reason doctors have not to prescribe me these things, for the record, it’s not like I could have come back positive on a drug test or something, but I’m just so young, and doctors just don’t want to trust teenagers with a script for lortab or percocet, even if it’s just a few for the bad days… but the point is, my pain WARRANTS medication that strong, narcotic medication is seemingly the standard treatment for the injury, so it’s THAT LEVEL of pain and I wish I could explain that to my parents without them jumping to the conclusion before I could explain I’m not asking them to try and get me these things or anything like that, that I’m a druggie or some shit, because that’s always where they want to go… they always want to think the worst of me, it’s like they get high off make me feel worthless.) So you really don’t get to have an opinion. No one has fixed my injury or tried even, and doctors don’t sense the urgency they seem to with adults to help someone who is sick, or injured, so my treatment (and diagnosis still, in some cases) isn’t a priority like it has been with so many health issue that both my parents have experienced, so no… unless you are me, or you REALLY, REALLY put yourself in my shoes, you don’t have a say, you don’t get an opinion. Not even an opinion. It’s not just that I don’t have to believe it. It’s that you don’t even get to have one. It makes no fucking sense for you to get to have one unless you’ve been me.
And you haven’t, and you know it. Never has a doctor accused you of being a drug seeker when you go to them with a SINUS INFECTION. (It was confirmed today at sick call, due to my severe allergies, I have yet another SEVERE sinus infection, and I was given an antibiotic shot, put on another rigorous course of antibiotics, augmentin twice a day this time, instead of levaquin once, and then a probiotic in between, so I don’t completely kill all my digestive systems good bacteria. The lady at the urgent care, story here, never even did an exam though, and insisted that I wasn’t having sinus issues and it was “tension”, though she clearly only thought I was there for drugs by how she conducted herself.) You’ve never had doctors in general treat you the way they treat me, you’ve never had to FIGHT for a diagnosis like I have, you’ve never had to suffer while you wait for someone who will believe you or who will run the test or who will have the answer or who will give you the treatment that will provide the relief you need. You simply go to a doctor, and they do their job, they work for you like their supposed to, because you’re an adult, and you’re not chronically ill, and you’ve never had a disabling injury that wasn’t just straight forward and simple for them to deal with.
How is it so hard to accept that sometimes you just can’t understand and you don’t get to have an opinion when you can’t possibly understand or relate?
Just shut the fuck up PLEASE. I’m sick of you running your mouth about what I should or shouldn’t do to help myself, because maybe I don’t always know what to do, but then, no one else knows any better, because everyone else seems to think this is some kind of game to me, and it’s getting on my fucking nerves, because this is the FURTHEST thing from a GAME in the WORLD to me. This is my BODY. This is my LIFE. And it isn’t much of one, but it’s all I’ve got right now, so again, kindly shut the fuck up about how I’m handling it.
There are some part of my MS that are hard to talk about, even with my husband. Last night I had to brace myself and have one of those conversations. When you are close to someone it can be harder to speak than it would be with anyone else. You don’t want them to see you as anything other than the person they married, especially when you have already had to chip off small piece, by small piece of their image of you, it becomes harder to chip any more pieces away.
Adam and I have been married for nearly 13 years, we married on his 21st birthday and we were weeks past our second anniversary when our world crashed around us both. I do mean both, MS has changed both our lives. He has shared each and every step downwards and tried to support me. I have felt so guilty at times as it just didn’t seem fare that he should go through any of it. I had married him as I love him, not to condemn him to being my carer and no matter how many times he tells me that that isn’t how he see it, I feel guilty. So having to tell him that yet another part of me is now failing and I may need his help with it, isn’t easy.
For several years I have had problems with my bladder, it like the rest of me is erratic and uncontrollable. I was taught how to use catheters, to ensure that it is empty, which helps in two ways. First it dramatically reduced the number of times I had infections from a couple a month to a couple a year. Second along with going regularly, as I don’t get the normal messages, reduced the accidents. Despite this there have been times when I have been beyond embarrassed, as once it starts flowing there is no stopping it. To my total embarrassment Adam has had to clean up after me on occasions. So last night was difficult, I had to give him the news that the same is now happening to my bowels.
Over the past few weeks I had worked out what was happening and that was one of the reasons I had called the rehab team. With all the details the team have decided that me fears are right. The nurse came to see me again on Tuesday and we went over the initial diagnoses and options. When I eat the process just pushes it through at the other end, clearly the reason for my weight gain in the past couple of months, the reason that I look 6 months pregnant and the pain through out my torso. Yet again at the minute there is little they can do but try to control it with laxatives, sounds back to front but we will see.
Although I know my MS is progressive and there are no really remissions, sometimes it feels as though I everything is stable and I am in a period of calm, when in the fact it is nibbling away at something inside. I then become like everyone else, unable to see what is wrong and not understanding that anything is. I can and am, frequently as naive as anyone else, when I see my hands not working properly, I know what is happening, when I choke on my food or drink, I know what is happening, but when it’s inside, unseen, it sneaks up on me, tricking me into thinking I’m OK.
This is probably going to be a really long post and it’s probably going to be about Ehlers-Danlos and hypermobility and stuff so if that will bore you then stop reading…
I say probably because I haven’t written it yet so it could turn out to be about anything.
One thing I can say for sure is that it’s going to take a long time to write because I keep having to take naps between words.
See that, there. I wrote that at about 2 or 3 this afternoon and now it’s gone 6 and going dark outside.
I’ve written and rewritten the actual start of this blog post more times than I now care to count. There’s something importantish that I want to say but it’s stuck in my brain underneath layers of what spoonies call brain fog.
Ack, there are so many things in there and it is. Just. Not. Working. Today.
I went to work this morning. And then I came home at lunch time. In fact, my boss drove me all the way home because he’s nice and super awesome and the bus stop was too far away for me to walk to by that point. Also, we had a really good conversation about EDS and associated things. I think he gets it. Greatest boss in the world ever?
I felt the need to write this up after reading some recent posts from a few people I follow that have been made to feel like crap by their GP’s.
I can’t remember if I read this analogy somewhere or if it’s one of mine so I’m going to treat it as mine.
So yeah, doctors are like jeans. You gotta try before you buy. There’s nothing worse than buying a pair of jeans and then getting home to discover they don’t fit right and that they chafe in weird places.
Well, there probably is something worse than this in the world but just go with me on this.
If they don’t fit right then you abandon them in the changing room. Or you take them home and look at them for a bit thinking “I wish I could wear you” before returning them for a refund.
Eventually, even if it takes a lot of sale searching, you find your favourite pair. The pair that you’d happily wear anywhere, with anything. The pair that fits great and makes you feel good.
Now, I am in no way advocating the literal sale and purchase of actual doctors but the most important thing with regards to your health care is to find a doctor that understands you and that you feel comfortable with. Especially your GP as they should be your first port of call in a non-emergency medical situation.
Even if he/she doesn’t know what to do with you they should be able and willing to refer you to someone who does and not make you feel bad about it at the same time. If it’s not working out between the two of you then it’s time to bid them farewell and move on.
N.B. Jeans that fit your best friend or your mother to absolute perfection still may not fit you. And vice versa.
Tim Roth so kindly retweeted for me. Much respect to him, his family, and all of you! I meant month but we can make the week last longer!
Have close family with MS… Multiple sclerosis awareness week…spread the word.. RT @TortTime: @TRhooligan1 can ya send some love for Multiple sclerosis awareness week? Sucks our life away slowly & unpredictably but we do it w a smile!
So other than going back on Copaxone (which sorta failed for me) my only other option seems to be Gilenya. I’m sorta scared of it to be honest but then again I should have been more scared of tysabri hah. Anyone on it? have any thoughts?
I’ve had to watch a lot of friends with chronic illnesses go through really rough times recently. It’s not easy to watch my friends jump over hurdles as I sit here in remission chasing my dreams at college. I know how lucky I am, but counting my blessings isn’t enough. I’ve felt helpless. I want to do something for them, but what?
I’ve mulled this over the past few weeks, thinking of the things that have made me happiest or would make me happiest when I’m sick and curled up in bed during a flare. Things I’ve found on Etsy or elsewhere that would make incredible gifts for chronic(ahem)-ally cool friends in your life - or yourself! Sometimes we all need a pick-me-up. Here’s my list - what would you add?
Amy’s Organ Bank - For the times when our real colons, kidneys, livers, hearts, etc need some good role models.
The Fault In Our Stars - I read this book by author (and vlogger) John Green in the middle of my blood count crisis, scared and vulnerable. It’s not exactly about chronic illness, but it gets a lot of things right.
ugh. You know, I was getting back to not obsessing being in control and thinking as positive as a cynic like me can for my future. I’ve been throwing myself into this installation project I’m working on and was back to that today trying to let go of all the crazy thoughts thanks to all of your support.
WELL. my neurologist’s assistant just called to tell me my allergy test in regards to Tysabri is positive and they want me off the medication. AHHHHHARrrgh. I’m so not happy with this. First they told me they could pre medicate me and I could continue to take the meds (when they were taking my blood for the tests) now they say I need to stop taking it and try something else.
Damnit I’ve tried the interferons and the ones that didn’t make me completely incapacitated from side effects didn’t stop the disease from progressing with new symptoms. My only option at this point other than going back to copaxone (on which I was still getting new symptoms) is Gylenia. Im doing more research (and had done it before but decided against it for many reasons) and I just am not sure how I’ll react to this one.
I’m so so frustrated. I had a story to tell you all about tripping and falling and wetting myself like a little baby the other day when trying to stay off the adderall like my doc had said but now I don’t even care about that. This is the only med that has given me a few good weeks of cognition and no new symptoms (though still maintaining the old ones) which was huge for me. I thought I was on a path to stabilizing a bit.
Ugh. I know I’m just frustrated and things could be much much worse but I am having that moment where I sorta wanna cry and sit on the floor and ask the air why i can’t catch a break. thats silly I know, I’ve had lots of breaks along the way (ssi, friends that are awesome, all of you) but right now I feel like I was kicked in the stomach again. Blah.
I see many of you are dealing with shitty things too. I’m sorry I’m too self absorbed to send each of you my good thoughts directly but know that they are there and that I’m just gonna embrace my internal hater right now cause well.. that gets me by.