Chronicles of Life with Multiple Sclerosis
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 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 not get sick dammit.
sending well wishes.. in the same place.
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.
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… ).
So my veins really suck. During my MRI this morning it took 3 attempts to find one (including one of those fantastic moments where the nurse sticks the needle in and just wiggles it around until she either finds something or gives up and moves to another place). So that wasn’t the most fun, especially combined with the MRI.
An hour or so after that I had my appointment with my neurologist. The good news is, I’m JC negative! wooo! So I started the paperwork to switch to tysabri. Being JC negative for now it seems like low enough risk that despite my special luck (hah) the benefits outweigh the risks.
The bad news, on the other hand, is my MRI showed new disease activity. boo. I figured that was the case since I’ve been having so much pain, numbness, and am falling down a lot. So? I’m on 3 days of IV solu medrol! FUN!!! They went ahead and gave me the first one since I was already there but I come back tomorrow and Wed for the rest. Hopefully this will help (and not make me as puffy, hungry, and moody as it normally does.. yeah. right). I’ve already reached that point where I’m reasonably sure I haven’t blinked in 10 minutes. Awesome!
The more important part of the bad news is that the nurse at the infusion center had just as much trouble (more really) as the MRI tech. 3 needles and 5 attempts to get it in. she got so frustrated after thinking she got the 4th try in that when she saw it bubble up with saline she just left it there. haha so for a good 45 minutes I considered if I could use that extra one for something fun like subcutaneous coffee or fast acting gin and tonic. haha. opted out of that thought eventually. Thankfully, as you can see, BP was there to make sure the rest of the process went right. Always helpful that stuffed sea turtle.
Sorry for the long breaks. I’m very sick all of a sudden and recovering from major surgery, so this will be the last and first weekly link roundup for a little bit. That said, a long-awaited Weekly Link Roundup!
- Pat’s Fund— “Working to solve the autoimmunity puzzle;” Pat’s Fund is an organization that advocates for autoimmune conditions by educating, increasing awareness in our society and funding research into autoimmunity— something we all know there needs to be more of. The fund was founded in 1999 after the passing of Pat Barnes from an autoimmune condition that affects blood platelets. Check out the site to learn more about where 100% of their proceeds go to and how you can get involved.
- Invisible Disabilities Association— IDA is a non-profit organization that encourages and educates others on invisible disabilities and works to bring them out of the dark by connecting people and organizations together internationally. Offering everything from awareness bracelets to books and pamphlets to educate family and loved ones on what it means to have an invisible illness, IDA is one of the leading foundations advocating for hundreds of these illnesses. They also have some great projects going on: Service Animal Awareness, My Invisible Disabilities Community, among seminars with foundations, hospitals, business and support groups. Check out their site for more information and a vast amount of resources and IDA events to help you and your loved ones adjust, cope, understand, and educate others on what it means to suffer invisibly.
- Empowering Caregivers— Founded in 1999, EC provides a safe-haven of sorts for caregivers of children, adults, and elderly by providing copious amounts of resources and articles, recommended reading lists, even writing exercises to help the caregiver understand and work through difficult emotions rather than letting it damage their emotional state or relationship with their loved one(s).
- Working With Chronic Illness— Struggling with finding the right job knowing you have a disease that could flare at any moment? I know it’s a terrifying prospect for myself anyway. Check out WWCI, perhaps you’ll find the advice and guidance you need to handle your career and chronic illness well.
Blog of the week: Prednisone Support— exactly what it sounds like; a blog made for others to commiserate and cope with a drug that works miracles on symptoms but causes its own awful chaos. Moon face, anyone? Check it out.