An old friend has been in town for the last 2 days...
and it was tons of fun. Love reminiscing about things that don’t involve MS, discussing our mutual woes with aging, and life and thinking about all the ridiculous things we did years ago and things we wish we’d done in retrospect.. but now, at midnight on friday, I’m really excited to take my baclofen and go to bed. That makes me both sad, and glad I have understanding but not overly inquisitive old friends.
One of the most frustrating things about MS for me has been the memory problems.
It is the strangest thing in the world to forget things you know, but only temporarily. For about three days (maybe longer?) I couldn’t remember the name of one of my former coworkers. We’d gone out to coffee together less than a week ago. I could picture every detail of his face, his voice, the things we talked about. I’ve known him for three years but I couldn’t remember his name. After days of struggling to recall on my own, I was about to go on Facebook to look his name up when suddenly I remembered it. Now I keep repeating it to myself over and over, paranoid I’ll forget again.
Sometimes I forget how to type. I am a computer professional so it’s kind of important. But once in a while I lose all the muscle memory associated with typing. I forget where all the letters are and just spew nonsense garbage if I’m at a keyboard.
Back Pain Info You Need to Know The pain of it all, what do you know about back pain until you feel it yourself. You cannot truly know anything, yet according to statistics, the majority of people in the world suffer some degree of back pain. Some people go through pain. Yet, these people have never survived injuries. Yet others go through pain from injuries, and feel the worst. Ironically, however, injuries are not the only cause of back pain, rather few medical conditions, including multiple sclerosis can cause back pain. Learn more about the diseases that ache, the back. When considering back pain one must ask what its cause is. How can one control the pain? What self-care prevention strategies can one use to ease back pain? What treatments are available to me? Have this one at once!e. You are Worth It!
yep, and I always end all attempts to feel better with a giant cloud of icy hot that generally leaves me coughing/sneezing and makes zoya mad even when I’m in the other room. heh.
I think the notion that I should hide my disease or keep it a secret is totally fucked. How can being open about my having MS be a disadvantage? Anyone who is not willing to date/employ/befriend me because of it is not worth my time/effort/energy/love. I understand that it’s totally up to people as individuals to disclose, what I guess is, quite private information about themselves but I read a lot about people spending (quite valuable) energy trying to pass as perfectly-abled.
The more people know, the more people are understanding. I make a point of being open about my MS, hopefully I come across happy and willing to answer peoples questions. Lots of people don’t know about MS, and admittedly I didn’t either. Which is a total embarrassment because my Aunt is nursing home-bound at under 60 with (I can only assume is) secondary progressive MS.
So many people think that it is a muscle disease, or a problem with bones. The more that I can fill people in, so they have a greater understanding on how it is for me living with MS the more they understand when I can’t do the things they want me to (and usually that I want to too). It makes it easier for me and also makes them feel less like I’m ditching them or being a “bad” friend because I can’t always see them/leave early etc.
Anyhow, my point is, I’d love to see people be less embarrassed of their ailments (be them physical or mental). Knowledge is power and rather than running with people who are ignorant or discriminatory, find people who love you for all of you (even the broken/weird/special/diffrent bits) because I swear they are out there.
Does getting you guys to go over there to read MS posts make me an asshole? Should I just post on both? What are your thoughts? I guess if you’re reading from your phone it’s easier just to read it here in your dashboard, eh? Okkkk fine, I’ll do both. But here’s the link still anyways.
Hardest lesson I still haven’t learned.. when everything changes the ability to accept and move forward in a whole different direction is what I admire most about so many people I know. Respect ya’ll. Hope to get there sooner rather than later.
I notice that when I get really stressed or sad, all I can think about is eating comfort foods. I don’t know why. I know exactly what’s happening while it’s happening but I still allow it to happen. I don’t know what to do to get over that hump. I’ve been sad…really really sad because of my MS problems over the last few months. It makes me feel really uncertain and uncomfortable with my future and like I can’t do any of the things I had planned for myself. I want things to be better…and I feel like they will be….I just don’t know how to make them better right now. I feel like I’m completely stuck and all I want is chips, soda, and ice cream. Having MS is the hardest thing in the world and I don’t get to “move forward” because it never goes away. I just wish my entire life didn’t revolve around it as well.
the steroids are leaving me with the same reaction. I think I ate everything in the state of massachusetts today. I’m still in pain and though I’m much more “human” than before its not as awesome as I wish it was and I hurt and just wanna lay here and eat chocolate. This was my stress/depressed response in the past and now too. its hard. the steroids just make it impossible not to happen even more than normal. its that out of control feeling that MS throws at you thats such a sick constant that even when things are looking up is still lurking in the background. Its scary and looming and I still don’t know how you come to terms with that and get beyond the constant roller coaster. Its useless and all but hang in there.. I’m with you and I hope our roller coasters will start heading up again soon. they have to right?
Today I am not having a “strong” day. Today I’m having a “cry in the rain” sort of day. A “try to smile and fake it” day. I’m getting a weird tightness in my back. It makes it hard to breath, and makes me panic. I just want it to stop. More than anything I just want to cry and cry and cry.
today I had so much trouble getting up it was scary. My meds barely helped. Didn’t want to miss the dermatology appointment (since every missed appointment pushes back my start of Gilenya and I’m getting pretty screwy on nothing and canceling so many appointments) so I went even though I was feeling worse than yesterday which was god awful. Well, the day ended after a (minor) car accident, parking in the wrong lot and having to walk a block to the right office, getting two moles removed for biopsy, driving home in rush hour traffic terrified I would kill myself on the way home because clearly I’m not ok, getting home after 6 and sitting and staring at the care sheet on how to take care of my wounds trying to actually process the info. yeah, so I don’t know if i’m supposed to do anything for that but I’m gonna roll on my side having been sitting up on the couch and go to sleep here hoping I can wake up in time to call and verify the time of my solu-medrol infusion since my phone says its at 12:00am… and I told a friend it was at 2pm during a phone conversation… so i’m guessing its not midnight and wondering if its noon not 2 and why I’m so incapable of keeping track of myself. woo. never been so excited to get a steroid infusion in my life.
Taking a massive round of steroids because of the numbness and general trouble I’m having with the right side of my body that impedes my ability to walk and function normally. I should totally be getting some super amazing muscles rather than catching a cold/the flu from them all. Yeah, I know, they’re corticosteroids not anabolic steroids… bah. I don’t want to get sick to notget sick dammit.
who has two thumbs, is in lots of pain, and gets a solu-medrol infusion this thursday?? THIS MOI.
Pain continues to get worse, fatigue, blah. not very coherent lately other than some babbling about Turtles and Tortoises and failed attempts at cleaning up my apartment. Hangover sunday didn’t help but well.. I had a lot of fun on saturday. Did manage to get a frame for this fantastic artwork @BigPictureThinking sent my way. Damn talented is what you are Mr.. Have so many emails to write but my energy was sucked away by the hour long conversation I had with SallieMae and verifying all the doc appointments I have this week. Echo tomorrow, Dermatologist wed… and since they moved my Vaccination for Chicken Pox to next tuesday I am getting me some Solu-medrol thursday! woohoo.
unrelated, can’t remember if I posted this yet but here i another sculpture I’ve been working on (was before my body decided it was done with doing things)
Spinal cord from MRI cast in a mold taken from a log slice i found.. not sure I like it much but we’ll see where it goes.
I almost never fill my rescue inhaler prescription because I don’t use it much and when I didn’t have insurance it cost over $40. It’s been bad for the past couple of weeks, though, so I’ve managed to go through all the ones I had lying around. Ugh. I’ll have to wait until Monday to get more. Fortunately I had to go to the pharmacy, anyway.
This has been the story of my life for a long time.. because of that I HOARD drugs like I’m a TLC tv show. I realize they expire.. but expired unused meds are better than no meds or meds that cost so much you can’t dream of paying for them (more importantly can’t pay for the doc appointment you have to have to get the prescription you can’t pay for.) ugh.
my ms pain is fucking unbearable right now. i’ve been experiencing a “hug” all day (which is when all the little muscles inbetween your ribs go into spasm and make it feel like a heart attack). it comes and goes in waves, but instead of relief when it’s gone i fear the next one. currently i am experiencing what i think is trigeminal neuralgia and i feel like my face was struck by lightening. or that my jaw is being ripped off. i can’t tell which. it’s subsided, but it still hurts and i’m afraid to look in the mirror because the pain feels that real that i’m not sure my entire face is going to be there. my hands and arms and legs all feel like i was beat with a bat. i am exhausted from being in pain all day. grocery shopping took TWO HOURS. two hours to shuffle through the store and get what i needed. i don’t know what to do for this pain, so i took two robaxacet and smoked a decent amount of weed. so far it is not helping. fuck fuck fuck fuck. it has to get better it has to get better it has to get better (my really lame mantra)
For all our sakes I’m repeating this mantra. Hope its eased up a bit
This article discusses the use of the components of abuse in the wheel below, with detailed examples of each one. For obvious reasons, it might be extremely triggering to disabled people who’ve survived abuse, but possibly also to non-disabled people who’ve survived abuse as well.
An incredibly informative article & graphic on caregiver abuse. We’ve placed the entire thing under a cut because of the triggering topic matter, but please be warned before clicking through that there is a graphic outlining different forms of abuse below, and descriptions of lived experience with caretaker abuse.
Specific trigger warnings: abuse, emotional abuse, medical abuse, physical abuse, sexual abuse, institutionalization, restraints, chemical restraints, caregiver abuse, dehumanization, abuse of power, infantilization.
Basically,be careful: this is a very important post, but it can easily be triggering and it’s very difficult to read.
I’d been fighting for the past 12-13 days, the escalating flare. ”Fighting” might not be the correct word … “ignoring” or “working through” may be more on point, but still not-completely incorrect.
People look at you like you’re crazy (or suffering from a conversion disorder) when you tell them that you are in pain 24/7. Or they just don’t know what to think at all. Disbelief, apathy, or the thought that it’s like a mild muscle cramp. How does one even begin to describe what a rare condition such as Complex Regional Pain Syndrome - the neurological syndrome with which I am afflicted - feels like?
As I venture out and meet new people with different life experiences, I am finding that I need to adapt the language that I tend to use - very pointed words, packed with meaning - to a more pedestrian style. Now, don’t get hung up on the word “pedestrian”, because it’s not meant as an insult, but accept the fact that there are different tiers of linguistic understanding and that’s fine, because if we all walked around speaking in TxtSpk or with the erudition of scholars, the world would be a pretty damned boring place in which to live.Anyhow, back to the point: how does one convey pain to those who are not in the medical establishment … or even to those who are in said occupation?
There are three basic types of pain - somatic (think: broken bone), visceral (think: cramps from menstruation), and neuropathic (think: carpal tunnel, or when you smash your elbow into a doorframe) … with a fourth, mixed pain, a combination of somatic-neuropathic - with many qualifiers (burning, tingling, stabbing, spasmodic, etc…). The interesting thing about all of this is that I often have conversations with individuals who deal with chronic pain on a regular basis who create their own descriptors, their own lingo.
For my sake, I knew I was in trouble last night when I was in the Blank Honors Center and couldn’t concentrate upon my math homework in the least. While calculus is enough to drive anyone over the edge, this was different. I could feel the mental pain blockade I have erected at all times crumbling; picture a seawall, endlessly buffeted by tidal surges and storms and small waves eroding slowly until one day, it collapses into itself. I took a walk, changed scenery, and attempted to dig into my Oratorio. To no avail.
I bussed it over to the Emergency Room.
They know me by sight now and my file has a “stickie” on it that flashes upon their records screens with language akin to, “Dr. V. is a patient under the care of the pain clinic. Tend to him immediately.) and I was ushered in to the triage area with all haste. Two hours later, the attending ER doctor came in to my room to discuss the risks and obtain consent for a ketamine-versed intravenous treatment (the versed has been prescribed to me for every ketamine treatment I’ve received ever since I had auditory hallucinations telling me I was going to die alone and no one would claim my body). Two courses of the treatment were run.
The funny thing is, it only takes the edge off to a point wherein I am able to repair the damaged mental seawall and - once again - render myself able to deal with the relentless waves of pain.
Highlights of the evening: BP 142/115 while on a beta-blocker; deep patellar tendon reflex in the right knee has decreased from +2 six weeks ago to +1 last night … which means that the flare is part of a larger issue, perhaps the lesion is more pronounced; in any event, last night marked the worst flare to date and I am more than thankful that the ketamine helped.
I really feel like I can’t do this forever. … … I just don’t know what to do.
when the pain makes you want to cry out of frustration but you're too tired
So much pain right now. all over. right side has been wonky for a few days but today its just moving up and down my body like electric current. The part that hurts is exrutiating and the part thats not at that time is warm or numb depending on the moment. I feel like my hands are going to pop open. They feel so swollen and hot its hard to type. I’m having crunching toes that I like to call my claw foot days and I’m so warm in general I’ve got fans on me, the heat off, and its 47 degrees outside. my brain keeps mixing up words and thoughts and when I got up (after 20 min of psyching myself up to get off the couch) I walked to the kitchen and got myself some water and layed back down remembering then I had actually gotten up to use the bathroom. I’ve got some eczema or something on my arm thats itching like crazy on top of all that. Its one of those moments where I’m posting because I just want to sleep but I can’t cause I’m in so much damn pain and all that makes me want to cry but I know that will make me feel worse. blah.
I know i’ve been over doing it lately, I’ve had so much going on I can’t not force myself to crawl out of bed and go to appointments (like the long ass physical I had today which generally involved tests I’ve already had in the last 2 months heh but I do love my GP.) i don’t see it letting up either. People wonder why we get behind on things, why our bills are late or our laundry is still not done. but when you’ve got lists of things that would make a healthy person tired, none of which you can say no to if you want to… you know.. not get put in jail by the IRS or have food in the house or start your new meds that you hope MIGHT make things better sooner than later.. we do it anyway…by taking extra meds, fighting through the tears the pain is inducing. It makes me wonder if the fact that I’m interacting in public is dangerous for all involved heh. But then the damn list doesn’t EVER shorten, it builds up anyway, the bills you can’t pay pile up anyway, and you push and you push and you eventually collapse and have to start all over again. some days I want to live in a sack in the woods (preferably one with internet and TV (just NBC, APL, BRAVO and USA would work) and lay there forever and just say screw all the tests, the bills, the everything.
sorry for the drama. just so so tired I kinda can’t believe I just typed all that. Hope its semi coherent.
Gylenia, Chicken pox, waiting, pain, and other bitchy updates from me
Ugh. So I’ve been without internet for a week now (thanks for sucking RCN). In general I feel like my health has been declining but my attempts to fight the pain and fatigue have been increasing so I guess Its a wash.
Today I got lots of results from the crap load of tests I’m required to complete before I can start Gylenia. All but the dermatologist has been done so I figured I’d be taking the new meds by the end of the month. Well.. that was wishful thinking. Turns out that I never did get exposed to the chicken pox. I knew that about myself but most docs looked at me and sorta laughed and said “I’m sure you were exposed but you don’t remember” or “I’m sure you had a really mild case and didn’t know what it was”. Well they were all wrong so now I need to get vaccinated. Woohoo.
So the nurse at the clinic very softly (and in her kindest social worker voice) told me that its not just a simple vaccine, I’ll get it this week if I’m lucky then wait a month then get another shot then wait another month then they will decide when to start me on the meds. hah!
Yep, that pushes back my start date about 3 months while curascript kindly made sure I received my first month of meds this week.. apparently so I could pay them the copay and stare at the box. The doc says I should probably get a solu-medrol infusion since I feel like I’m on the verge of a flare up (pain and fatigue and cog - fog wise). But since im getting vaccinated I’ll have to wait till they figure out when I can get it so that it doesn’t interfere with the vaccine. Also there is the fact that I’ll likely get sick from the damn shots and I the person I hang out with the most is both immobile and has never had the chicken pox so I can’t expose her. blerg.
Point of all this? I feel like shit and I’m starting to wonder if the medication is even worth all this crap. /negativity
oh and P.S. I may not have internet but I’ve been meticulously typing this post out on my old ipad for the last 6 hours so that I can post it using a data plan I can’t afford to pay for. YAY!!!
A fine example of the reality of what LGBT couples face throughout their lives and the realities of chronic illness for everyone, and the extra difficulties faced by LGBT couples. Zach Wahls talks about his two moms, one of whom was diagnosed with MS and the trials of dealing with her treatment etc while her “wife” was not legally her wife and how the hospitals treated her. Showing the true commitment that can exist between two people when something as serious as chronic illness enters their lives, regardless of sexuality, race, or any of the other things people judge us humans for.
Great interview and sounds like a book I want to read 4 times. Chronic illness, raising children, life, all hard enough… to have people tell you you have no rights in relation to your life partner? Damn. Doctors, Nurses, Health Care professionals have witnessed too many of us going it alone to deny love and support from any direction it is delivered. Judge yourself people. Anyway. “My Two Moms” by Zach Wahls. Check it out.