Lots of people talk about the right to be happy, but for me I need to tell myself that it’s ok to be unhappy. That my experiences and my pain are valid and if it hurts me then it’s because what I am dealing with is hard.
I spent so much time hating my body for the way it looks and fighting to “fix it”. Now that seems pretty damn trite. My body is only going to further revolt against me in new ways. I’ll never be able to say “i love my body”.
A recent study on patients with Multiple Sclerosis (MS) has found that one-third experience recurring negative emotions towards their treatment regimen. Many people dislike taking medications, but when treatment causes such anxiety, as in the case with MS, it can be assumed that adherence will be affected. It is important that health care professionals and adherence program providers be understanding of individuals’ unique hurdles. LINK
bigpicturethinking asked: I couldm’t find the ask on the chronically something page…. but just wanted to say the post you made today (or queued up) really touched me… as many of you posts do… but this one more than most. You’re awesome. thanks. X.
no, YOU are awesome :-D
Also, thank you! I can’t tell you how much reading other peoples experience helped me and inspired me to start writing myself. To know that others are reading what I write and that it might impact them positively too is just.. well… awesome. So thanks for this. Its made my day.
oh and I fixed the ask on Chronically-something so that no one has to follow the place where I post a million 30 rock pictures and or read excessively about how I like turtles.
I was planning on a lengthy post on all the things I’m eternally grateful for. It was going to be a long reflection on the wonderful people in my life, the lessons I’ve learned that have helped me through, and all the reasons I have to say I’m a really lucky person. Instead? I’ve decided to step away from the computer, leave these posts to the queue, and go live my life instead of thinking about it. But as I’m writing this to queue for the morning I want to take a moment to be grateful to all of you for reading and writing and creating a place where I can learn from others experiences and feel less alone.
Thanks #chronicillness and #multiplesclerosis tumblr people. Hope you have a great day.
I'd never do that, I'm here to help. Check out your joints!
Ummmm, they are all red and puffy and stiff, AND they hurt like hell!!!
I do my job, what are you trying to say? How'd I ruin your life? I want examples!
Well, I'm a raging bitch, I gained an amount of weight I can't say out loud without crying, but let's just say you can't tell the difference between me and a woman that is in the beginning of her second trimester of pregnancy, I can't stop eating, my blood sugar is all over the damn place, I have acne, my vision is all strange, AND my head hurts!!!
About one month ago I was diagnosed with multiple sclerosis. This is my blog about it.
Receiving such a diagnose is the most brutal experience of my life, and since the health system has proven quite incapable of helping me so far, I hope to achieve at least some therapeutic effect from these writings.
I wish to write about what led up to my diagnosis and how I will attempt to deal with knowing that I will never ever become totally well again. The anxiety of never knowing what will happen and the fear of paralysis and death.
It happened about three months ago when I noticed that the left side of my face had lost some of its feeling. It wasn’t exactly numb, it just felt a bit less sensitive. I shrugged it off and didn’t think too much of it, but after a while I decided to see a doctor nonetheless.
She ran some tests, mostly just basic motor skill exercises, which I passed with flying colors. Trumpet fanfares extravaganza. She did, however, call a neurologist, who advised that we should do more tests at the hospital.
And tests we did. At first I went through an MR scan of my brain. For those who don’t know what that is, you are strapped and sent into a tube for 45 minutes, while magnetic resonance is sent through your brain. After that they examine the charts and numbers (always with the numbers) and call you into an examination.
The first warning sign that something might be wrong was when they didn’t just totally acquit me of everything and send me home with a lollipop.
Instead they told me about the excessive amount of scar tissue they had found on my brain and that further examinations and tests were needed.
Actually four more tests, which I will describe in the next post.
Obviously I did not realize this at the time, but all this was leading up to that crucial point:
Doctor: Dear Sir. Unfortunately, you have sclerosis.
So I am on vacation! Yep, vacation. Though many people would laugh at that since I’m generally just doing a lot of the same activities like sitting on a couch, taking my medication, watching TV, and living on the computer, I consider being on a different coast and in a different time zone “vacation”. More importantly, I’m spending time doing nothing in the company of some of my very favorite people in the world. Pretty great I must say.
In light of my new location and travel experience, after a week of bad MRIs and Steroid infusions, I thought I’d share some random travel advice (aka things I will write in the hopes that I will take my own advice) with you all. I’m pretty jet lagged and it makes me even more incoherent than before (but not less rambling sorry!) so I will present these to you in annotated list form.
*Going through security will make you friends and enemies.
So I’m a bit of a technology whore. I go to many lengths to refurbish, resell, etc in order to have a laptop and an Ipad. There are lots of reasons for this that I’ll save for another post and believe me these items are worse for wear. Anyway, I also travel with injectables, a cpap machine, and the giant bag of meds I must have on me at all times. Fine right? Well since I’m carrying all this stuff and I lose m balance a lot, I brought a cane with me to assist in the standing process. With all these things on me, having to take off shoes and sweaters and all, going through security is a bitch. Sometimes you find others that, despite the complete difference of the situation, happily relate to you. In front of me in line was a very nice couple with a small child. They had laptops, bottles, strollers, diapers, and a million other carry ons. They stumbled their way up to the scanner belt balancing a baby while unloading all their crap. The kindly offered to let me go ahead of them because of “all their stuff” at which point I laughed and said ‘please, I completely understand. I’ll take as long if not longer so please don’t worry’. It’s always nice to feel like you’re in the same boat when the boat is something established by a normal incident like traveling with a child. So, great right? Well, the man behind me was a whole different story. The anger and huffing that flew from this mans face and mouth was pretty intimidating. Clearly he had better places to be than standing behind me (and the couple with the kid). He scoffed at their attempts to unload and when he looked at me behind them he just groaned and rolled his eyes. His unhappiness was growing and, being the closest too him, I was getting the worst of his anger. The man behind him was starting to get on the huffing man boat as well so I knew this was going to get uncomfortable. Long story short (or not so short since I continue to give you this inane amount of detail) the man behind me looked at the cane and me and said, ” isn’t there a line you can go through with that so that I don’t have to wait behind you?” I smiled and said no sorry but inside I was wondering if TSA would take me away for punching him in the face. I tried to ignore him while I took off my shoes all the looking at this mans scowl. In some ways I could understand his frustration. I’ve been in a hurry, I’ve been annoyed by not being able to push ahead, and really how could I expect him to understand? So the more he scowled and the longer I took the more I wanted to half apologize and half tell him to suck it. Hah. So instead of doing either I continued to put my stuff on the conveyer belt and looked at him and said “I know this is annoying but please keep in mind, you’ll go through security and move on but I have to live like this every day”. His face softened a bit, so maybe I made him think.
Oh and in case you were wondering, I had to go through the damn porn scanner for the first time. If I show up in a TSA based x-ray vision porn I’m going to be MAD.
*Spasticity + Long Flights = Ow.
Yeah, not surprising. While I used to spend days driving from city to city on no sleep, take long flights focusing only on my common fear of flying issues, the flight here really kicked my ass. Seats are smaller than they used to be and sitting in cramped quarters for 6 hours really makes that neck and back pain kick in. Though I didn’t take much, I fear even the highest dose of Baclofen written on *my* bottle didn’t help me much. I sort of figured it would be painful considering my latest serious symptoms but this was pretty intense. Thoughts for next time? Ask doc if I can take more baclofen, spray myself down with Icy hot even if it will annoy my seatmates, and bring some sort of back pillow. The steroids had helped so much but I kind of feel like I’m back a few weeks ago when my leg would give out and I felt like I was kicked repeatedly from the waist up.
*Turbulence + Frequent need to pee = oops
It was pointed out to me that I use the bathroom a lot. Guess I didn’t notice before then because when I’m home alone I don’t keep a log. heh. Maybe I should. In any case, walking up and down the isle and waiting in line with a small child jumping up and down and on you while you stand is no good. If you don’t fall over then just wait till you’re trying to pee in an airplane bathroom for the 8th time and it hits an air pocket. Even the healthiest person would have trouble not peeing on themselves heh.
*Post-steroid hunger on flights is expensive
Like the flight attendant told the man in the row in front of me, nothing is free on planes anymore. Seriously. Cheese plate? 10 dollars. Sandwich? 10 dollars. Cookies? 10 dollars. Flying after a 3 day steroid infusion is hard. Watching people in front of you eat cheese and cookies does nothing to quell the hunger that you’ve been fighting every minute of the day since it began. So remember to bring your own snacks. They’ll be healthier and you won’t end up spending 30 bucks you don’t have for something mostly stale and worth all of 5 dollars worth of food stamps. Oh, and they don’t take food stamps (since I know you were wondering)
Seriously. Don’t forget this. Its not like you can sleep hopped up on steroids and in those uncomfortable airplane seats. You’ll probably end up sitting next to some strange man that’ll fall asleep and start falling onto your shoulder within 30 minutes of the flight like me and then to be forced to watch Monte Carlo staring Selena Gomez? It’s enough to send a healthy person into a tailspin.
So that’s it for my basic advice for air travel after a steroid infusion. Obviously there are a few key things to include here that I haven’t mentioned. Request a bulkhead seat. Don’t be afraid to tell them you need more room (This part is mostly me yelling at myself heh). I have a problem with that, and didn’t do it this time. I got to tell you, nothing puts a damper on vacation fun like knees that are stiff and painful, an extra cramping back, and a neck that’s like a steal rod. You’ll lose at least a day (yeah, I slept all day yesterday… ).
1. Do less. This is my productivity mantra, and it’s counterintuitive. I actually don’t believe in productivity, but instead believe in doing the important things. Do less, and you’ll force yourself to choose between what’s just busywork, and what really matters. Life then becomes effortless, as you accomplish big things while being less busy.
2. Having less is lighter. Start asking yourself if you really need everything you have, or if you just have it out of fear. Start to let go of what you have, so it doesn’t own you. And then, as you have less, you feel lighter. It’s wonderful.
3. Let the little things go. People who struggle often fight over little things. We obsess over things that don’t really matter. We create resistance instead of letting things glide off us. Let the little things go,breathe, and move on to the important things.
4. Clean as you go. I haven’t written about this for a long time, but early in the life of Zen Habits I wrote about the habit of cleaning as you go. Instead of letting the cleaning pile up, put things away when you’re done. Wash your bowl. Wipe the counters clean as you pass them. Sweep up dirt when you notice it. By cleaning a little bit at a time, as you make messes, cleaning up becomes a breeze, and it’s never difficult. By the way, this applies to everything in life, not just cleaning.
5. Make small, gradual changes. Most people are too impatient to follow this advice — they want to do everything at once. We have so many changes to make, but we don’t want to wait a year for it all to happen. As a result, we often fail, and then feel crappy about it. Or we don’t start at all, because so many big changes is intimidating and overwhelming. I’ve learned the hard way that small changes are incredibly powerful, and they last longer. Gradual change leads to huge change, but slowly, and in a way that sticks. And it’s effortless.
6. Learn to focus on the things that matter. This is implied in the items above, but it’s so important I have to emphasize it. Swimming (or any physical activity for that matter) is best done when you do only the motions that matter, and eliminate the extraneous motions. Stop thrashing, start becoming more efficient and fluid. You do this by learning what matters, and cutting out the wasted activity.
7. Be compassionate. This makes dealing with others much more effortless. It also makes you feel better about yourself. People like you more, and you improve the lives of others. Make every dealing with another human being one where you practice compassion.
People I know but don’t know well enough (read: classmates, coworkers) saying this shit: “geez aren’t you always sick?” “you get sick a lot, there must be something wong with you?” “you’re sick again? *eyeroll*” or better yet when a teacher refuses to believe me I was sick AGAIN and gives me this nice condesending look and pats my shoulder “aren’t you always sick?”
Yes, I am always sick! EVERY. SINGLE. DAY. OF. MY. LIFE. Does it always show? Nope, I can be healthy for months at a time but see my blood likes to think of me as an enemy okay? I am sick a LOT but I don’t need to be reminded by your STUPID comments. I have enough to deal with without you questioning me or reminding me or, worse even, making me out to seem like I’m LYING. Oh and once I tell you I have a blood disorder and you mention how your mother/sister/uncle/best friend/aunt/whoever has some sort of disorder and they’re not sick half as much as I am? Well whoofuckinghoo for them because I’d LOVE to be in their place!! A MILLION TIMES OVER. But you know what? I’m not because sadly, for one reason or another, this thing affects me a CERTAIN WAY. Why do you even ask if it turns out you don’t believe me anyway? Why the need to doubt and mock me? Why not let me be? Do people think this is easy or fun for me? That if there was some pill I could take to make this go away and be able not to get sick monthly I would? That I LIKE spending my money on hospitals and medications… bitch please, I still want my playstation three but health comes first.
Just leave me alone and go be a judgemental asshole SOMEWHERE ELSE.
Also, I am sorry you find it amusing that on top of this I am also allergic to a LOT OF SHIT. I am sorry that I ask you nicely to please not smoke around me because it sets my allergies off which can make my already fucked up immune system go HAYWIRE. Yeah, it’s a lot to handle to be around me, thanks for reminding me… not like I live with myself TWENTYFOURFUCKINGSEVEN.
10 things NOT to do while having Solu-medrol infusions
in no particular order
1. try on old clothes you found when obsessively cleaning because you either recently discovered them or you can’t sleep from all the steroids.
i promise this will generally end in either tears, yelling, or throwing away things you’ll great throwing away in a few days.
2. visit a local bakery
i’m not sure this needs any commentary.. plus I’m busy shoving cake in my face so typing is hard. (yeah it tastes like metal, but mmm good chocolatey metal)
3. pick up the phone to call someone without looking at the clock.
they’ll either be asleep cause its 4am or they’ll answer and you’ll ramble at a high speed, possibly cry randomly or get offended by an off hand comment about last episode of your favorite TV show. Also, the likelihood neither of you will remember what happened during that call is pretty high
4. try to develop the ability to move things with your mind because you are wide awake but your body is so exhausted it can’t move (this one applies most after the second and third infusion)
Well the likelihood this will work is low (though if it does please share your methods .) And when it doesn’t work, it might end the the tears and yelling described in tip 1.
5. put on your extra warm sweat pants, a hood and hide in your snuggy after just noticing your beet red face.
if you’re anything like me you’ll be drenched in sweat with some hot flashes that put your mom’s menopause to shame. Then you’ll just have extra laundry you probably don’t have energy to do.
6 forget to put on deodorant
see above. the better you smell the nicer the nurses are.
7. Bring the favorite and most fattening food to your infusion in a strange attempt at aversion therapy.
you’ll either be too nauseous to even attempt to eat it or you’ll be in the eat everything in sight stage and no metallic taste will ruin that food for ya.
8.Forget to bring entertainment to your infusion
Lets face it. as nice as your neighbors may be, hours of small talk while hopped up on steroids is not ideal. Even if you knit theres only so much talking about knitting you can do when you’re not able to knit while talking about it.
9.Watch the home shopping network drink a bout of insomnia
You really don’t need that magic bullet or a new juicer (though that TV knife really will cut through anything).
10.forget that you’re on steroids
Its in ya for at least a week… so keep that in mind when you make big decisions and/or talk to your friends and family. Make sure to revisit those after you’ve returned to a less drugged state.
Breakthrough pain (BTP) is a fact of life for many cancer patients. But pain experts are now finding that these sudden, temporary flares of severe pain can affect people with noncancerous conditions as well.
“We are much better now at identifying breakthrough pain, partly because the government requires that we ask if a patient is in pain,” says Naum Shaparin, MD. Shaparin is a pain management specialist at New Jersey Medical School. “Before this ‘fifth vital sign’ became the norm, patients with pain were often missed because the question wasn’t asked.”
And new research confirms that breakthrough pain is common among noncancer patients. A recent study published in the Journal of Opioid Management found that breakthrough pain was more common in patients without cancer than among those with the disease. And the noncancer patients were more impaired than those with cancer.
Breakthrough pain — often called “flares” by doctors or “flare-ups” by patients — is serious enough to upset the lives of people who are already trying to control chronic pain with one or more drugs. BTP is not new pain. It is a more severe episode of the background pain that already exists.
By the Numbers
Findings taken from an American Pain Foundation (APF) survey of cancer-pain patients regarding breakthrough cancer pain confirm that numbers tell the story:
More than 80% say that BTP affects the quality of their lives, including their desire to participate in certain activities.
More than 70% say that BTP affects their relationships with family members and their ability to perform everyday chores.
More than 50% say that BTP has increased their daily medical expenses.
While there aren’t as many hard statistics on noncancer BTP, an increasing body of evidence links it with rheumatoid arthritis, osteoarthritis, migraine headaches, nerve pain, low back pain, shingles, fibromyalgia, and diabetic neuropathy. The list continues to grow.
Why, When, How Often, and How Long
Different things trigger BTP for different people. Sometimes, it just happens for no particular reason. At other times, individuals get flares during certain activities like exercising, coughing, moving after surgery, going to the bathroom, or even during a simple act like dressing.
“Another problem is called end-of-dose failure,” Shaparin tells WebMD. “This happens when a patient is started on a long-acting opioid. Although the medication is supposed to last 12 hours, in some people it lasts less; at times, only eight hours. The person experiences BTP when the long-acting drug is not effective for the intended length of time.”
Whatever the cause, breakthrough pain comes on suddenly, often without warning, and it can happen even if a person is taking medication for chronic pain. It reaches peak intensity within three minutes and normally lasts 30 to 60 minutes.
People with chronic pain who take opioid drugs experience breakthrough pain or severe flares an average of twice a day, or 14 times each week, according to an American Pain Foundation report.
Another study showed that the average noncancer patient had BTP over a period of three-and-a-half years. According to the National Pain Foundation, researchers estimate that more than 80% of people taking long-acting medications for chronic pain experience breakthrough pain.
decided to take a hot bath tonight. it was the first one in almost two years (since I was told I have MS).
I decided to do this because, well, they say heat is bad for you and lately I’m sick people telling me what I can’t do. And mostly because I wanted to see what happens whens..
Well, for the record, it’s definitely a horrible idea. (Especially on shot night!) It started with both hands being numb, which isn’t shocking, that happens when I wash my hands. Then numbness in feet, legs, arms.. muscle spasms in both legs. Oh, and my fingers are still twitching (this was over an hour and a half ago).
Needless to say, won’t be doing this again.. such a stupid idea.
PS: I’m procrastinating doing my shot tonight. :(
oh man. I did something just like this. I went to an indoor hot tub hahaha. What was I thinking :::headdesk::: it ended up being one of the worst ideas ever heh but damnit i wanted to go. sucks so very much. I hope you get some relief soon.
I mean, I am not happy that they are sick too, but we all kind of relate to each other. Even when our diagnosis is not the same we still understand what the other is going through to a certain degree. I mean I have met people with Crohn’s, lupus, arthritis, diabetes, etc. and all of their symptoms are similar to some of mine since my illness effects just about everything that my body should do on its own. It is just a good feeling to have people to relate to. That is all. I hope everyone is having a lovely day and is feeling somewhat well. :) And if you need to talk then feel free to come to me.
Emotional Bag Check is a site where you can offload your emotional baggage in exchange for a song. You write a short explanation of what’s bothering you, and then a stranger will offer you advice or consolation in the form of a hand-picked song. You can also help others lighten the load by offering them appropriate songs in exchange for their experiences. The service is anonymous.