An Italian doctor has been getting dramatic results with a new type of treatment for Multiple Sclerosis, or MS, which affects up to 2.5 million people worldwide. In an initial study, Dr. Paolo Zamb…
I find this article interesting because it mentions that this actress has been managing her MS with Tecfidera for six years. However, Tecfidera has only been on the market for three years. Unless she was part of the Phase 1 and Phase 2 trials at NIH, I think this is either a mistake or a lie.
This is a tough one, because it can apply to so many aspects of what goes on in my head. I could tell you what my inner-voice says when I consider going back to school, or what I thought the very second one of my babies called me “mommy,” but I’m not going there. However, when it comes to me and about me in general, I can tell you this: I am female. And because it seems trendy to preach about sexual orientation, I was born a female, and I am straight. Perhaps, I am middle-aged, and I’m a military wife and mom of 2 kids. I love to quilt and have a huge stash (a/k/a fabric collection for you non-quilters). Within 2 1/2 years of turning 40, I became and adult orphan. If you have not lost your parents, you will not understand what this means. It means my parents are not here to sing Happy Birthday to me over the phone every year, and I really loved when they did that. I keep from the world that I have a disease that I cannot seem to find time for in my life. I think I’m mourning for the simple things I used to do without preplanning when and how I will take my medication or pre-napping before my next action. I sometimes feel like everyone knows about my secret disease when I walk into a room. For the few that do know, I feel like they are always sizing me up to see if I look different. It hurts my feelings–for some ridiculous reason–that after I finally feel comfortable and secure enough with a friend to take the plunge and them let them in, that they respond by telling me that I do not look like I have MS. It pains me as an insult would, because I do not ever want to look like I have any affliction and am terrified of the possibility or probability of actually looking the part. So, I wonder, if the response after revealing the secret to friend, will someday be something other than that friend telling me that I do not look like I have a disease; when that happens, will I then be ticked that I look the part? When I hear that I do not look like I have MS, it confirms to me that someday I will. I do not want to look the part of having any illness, and when I’m told I look fine and disease free, out loud I say to them that I will never be at that point, but inside it is a very vivid fear that I drag around, because there are plenty of times when I am a neurological mess and look awful, but I either stay home, or I don’t get out of the car unless I absolutely have to, and I try not to engage in conversation too much because I sound like a babbling moron who either forgets what she is saying mid-sentence or just forgets random words–without any warning to me, the speaker. And sometimes, when I can’t avoid showing up (this happens on a daily basis), I think people must surely assume I am a closet alcoholic or drug user because I seem to be somewhere out in left field unable to focus on normal chit-chat. Those are the times I want to be invisible. I’m on a see-saw with MS–sometimes I’m way above it, and other times it is way above me.
Do you have a patient with “radiologically isolated syndrome” — and, if so, what do you tell your patient?
I plan to write more of my opinion about this story later, but I could not resist getting it out there immediately. I can think of at lease five reasons of “why” it may not be such a great idea for this guy to be a street cop with the NYPD, however, I can also easily give at lease five reasons to hire him to maybe take a support position with the NYPD maybe as a detective at a job with minimal traveling and, of course, he’ll need a comfortable chair and, of course air conditioning–and lots of it. If he is looking to be out and about patrolling the subways and navigating the miles and miles of stairs during the hot summer or extreme cold everyday, then I have to say that this is not a job for him. More to follow later.
Good Bye, Fat February! You know who you are. You do this to me every year. You get me in a funk. You overserved too many gray days and snow and muckety-muck. Once again, I’m glad you are over. Welcome, March. I’m almost two weeks behind in gathering my 40 bags in 40 days. Can I blame that on February? So, since I’ve packed up and kicked out just ONE bag in that time, I have to fill 13 more before Wednesday. If I don’t do it all tomorrow, I will wake up on Wednesday owing 14 bags since Lent started. Like I said, good bye Fat February. Oh, and you made me eat way too much during your stay. So, There!
The fact that I open my browser and there is a link suggested regarding an MS article is nothing new. Trackers have a way of knowing way too much about a person. The irony of this article being the one of today’s click is that I just got back home from an appointment with a new, unsolicited, Internist. Yes, TriCare switched PCMs on me yet again.
Well, this new Internist–let’s just call her ‘Noeyecontactmade’–did not even look at me when I entered her examining room. In fact, her eyes stayed glued to her computer monitor even while she introduced herself me. I had made the appointment for prescription refills, so she knew to ask me which prescriptions I needed new scripts for. One was for thyroid medication and the other for 800mg Motrin (horse-sized pills). Probably the top two meds which help me put my feet on the floor every morning. She did some reading about me…..listened to my heart for no more than 2 seconds–so I am sure it was not possible to even pick up on whether or not I had a steady rhythm–then sat back down typed some more. She looked over her shoulder, told me it was nice to meet me (yeah, right) and that she put the Rx I asked for in the system to be picked up at the pharmacy.
While she was reading about me, she had to have seen that I have an incurable disease, and perhaps maybe that triggered a lightbulb in her head as to why I take so many other meds, and to perhaps ask me why I even need 1,600mg of Motrin a day? Nope. Nadda. Nothing. No questions asked. Take care; comb your hair. I was there for the Rx and the Rx only. She made that crystal clear. I don’t really give a flying fuck, because she is a Resident here at the Army hospital and I know she’ll rotate out of here soon only to be replaced by another doc without any prior experience of having a good bedside manner. I wish my neurologist would just prescribe the darn Synthroid like my former neuro did. I can’t be bothered with this crap of going to these kid doctors whose only goal is to see the most patients in one day so that they can win the contest amongst their Resident peers. TriCare: Quit wasting my time.
I walked out chuckling in disbelief. I hope I never have to see that asshole punk Resident again. Big fucking deal. I hope the Surgeon General of the Army sends me a survey to fill out about this office visit. And, I hope she does not include me in the tally of how many patients she saw today, because the bitch never looked me in the eye–making it impossible to include me as a patient she ’saw’ today. So, here’s this article preaching about the importance of being your own best advocate when it comes to medical treatment. No shit. I’d probably be in a wheelchair, bald and have that thyroid disease brain fog rolling with me wherever I went if I were not the best darn advocate for myself.
So, I just happened to glance up at my blog name and header. If you ask me (go ahead, ask), how long its been since I’ve sat at my sewing machine, I would tell you that I am there quite frequently. When I glance back at the past two years’ posts, I’ve written nothing about quilting. In fact, I don’t think I’ve even posted on the subject in at least four years! Yes, I am still the hobby quilter I’ve proclaimed myself to be, but I’ve turned into more of a sporadic quilter. Another thing I’ve noticed and may have written about eons ago, is that quite a ridiculous amount of unfinished quilts are lying about around here. I think I’m up to twelve or one or two more than that, which is definitely more than I’ve ever written or spoken about. I could use some help getting those to completion.
Sometimes, I think that I would benefit greatly from a life coach. But not just the type that I would visit once a week or so, but more like the type of coach who could be here to accompany me all day and she would carry a stopwatch and be forever steering me in the right direction. I need to be kept on a short leash (I have dogs so I can’t help but use that phrase). Seriously, my kids are disasters with their personal stuff, and at this moment, there are stacks of clean, folded clothes longing to be put away, but they can’t. The drawers in the kids’ rooms are hideously overstuffed with rumpled up mounds of everything. When I do organize their drawers (at least twice a year), the kids “ooh” and “ahh” for a few days and when the novelty of knowing exactly where everything is wears off, they are back to shoving and turning over and digging to ensure that all of my beautiful folding handiwork is destroyed. A life coach would help me manage my time and my kids’ time properly so we are all on a regular schedule of organizing our clothing and other essentials. I use the term ‘we’ loosely; my kids don’t do shit on their own unless I’m standing over them furiously pointing out what needs to be picked up, thrown out, put away or burned.
A life coach would be with me in my sewing room (which I really love being able to refer to it as such) steering and directing me to stay on track while aiming to finish everything before I start anything new. I try. I plan. I envision what it would be like, but still, I get sidetracked and my creativity conquers all sense of priority and I wind up spending time choosing and cutting up fabric for hours and then spend weeks turning it into something amazing and then, just before I am about to finish it, I get bored with it and set it to the side.
So, I wonder, is anyone reading this crap, and has it been blatantly obvious that I have not written about what I enjoy doing most? I was not even aware of it until this evening. Maybe a lower level of consciousness prevents me from mentioning my embarrassing habit (no, it’s more like a character flaw. Maybe it has become obvious that I should remove the header that reads “A hobby quilters journey with MS,” and replace it with “A persistent un-finisher’s journey with MS.” Maybe.
P.S.–I just proofread this, and I am so pleased that I did not once mention how that fuckin’ disease made me feel today.
I’m curious about my readers. There are very few readers, but I’m interested in where they are from, and for no particular reason. So, I checked out my stats, and I had three separate visitors. One is from the US, one from Canada and the third from Malta. Hmmm…could there actually be a human being in Malta that somehow linked to my blog. No way. However, if you are reading this, and happen to live in Malta, how did you find this?
I have two kids. I retrieved one from middle school at 3:15 and brought her home. After a two minute bathroom break, I was back in the car and sat in sloooow moving traffic for one hour down to the high school. My girl and three others in our carpool got in the car after Cheer and Field Hockey (my kid is in Cheer) and we began the ride back up. I dropped three carpool kids off at their homes (whew–one of them lives 6 miles north of our house–that was ridiculous because then it was 6 miles back down south) and then back on base to come home. It was 6:58pm when we pulled in. Holy road travels! Between the two schools and drop offs, I was behind the wheel for four hours. Four Hours! I’m flippin out of my mind exhausted. I have pain behind both eyeballs and my vision has been blurry all day. In fact, there was not one road sign I could see well enough to even read. I was on I-95, and could not read the giant green signs that indicated the name of the upcoming exits. I don’t have time for pain or any doctor visit, test, evaluation or treatment. I’m praying it away. That works for fundamentalist types all the time. In fact, when I was in high school, I met a girl who prayed her virginity be fully-restored. Really. She said it worked. The fact that she had already had a baby at 17 meant nothing, because her prayer was heard and she had been SAYYVVEDD! Pain pain go away, you’ve fucked up enough of my day…
This is a quick little chart to remind me of what ails me–I could have written this thing myself. Actually, there are a few symptoms I can add to, but why bother? Multiple Sclerosis Triggers to Avoid – Multiple Sclerosis.
Wow, the writer of this article certainly found a disparaging way to report recent changes to the Minnesota Wild lineup (by the way, we are fans of hockey in this house–always rooting for the NY Islanders or whichever team is playing against the NJ Devils). I posted an earlier article which I found to be spirit-boosting for myself and perhaps other MSers would find it that way as well. The article gave a brief, uplifting synopsis about the goalie for the Minnesota Wild, Josh Harding–a recently diagnosed MSer–having an incredible season. Wait…(do you hear the arm of the record player loudly scratch across his gold album?)…today, the Washington Post shamelessly ‘prints’ this article– shamelessly written by Dave Campbell of the Associated Press–which is struggling to completely blow the role model image I see in Josh Harding. Shame, shame. Yes, the writer does in fact claim that the General Manager of the team, Chuck Fletcher said, “Backstrom (the backup goalie to Harding) nor Harding will be healthy enough to mind the net again this season…” (I just heard another loooong scratch across a record album). Could these be the manager’s true words, or are these words simply strung together by the writer? Shame again, if this were crafty writing tactic to completely shed a negative light on all those mentioned in the article. The other player, Backstrom, is rehabing from severe player-related injuries and of course, Harding, is in the midst of “his best season ever” proudly showing the world that MS can just fuck off and die. If the written words are true, did Fletcher really state that Harding will “probably finished in the fall, too,” ? How dare he speak on behalf of Harding? If there is anything a disease inflicted person would despise more, it would be hearing (or reading) someone else speaking on their behalf in a negative tone. His slanderous choice of words could be career ruining for this guy who is boldly and publicly working to defy the crushing force of MS. Again, if these words are true, I hope that Harding uses our justice system well to keep him from ever spewing such harsh words in the future. Just because a sports figure, or anyone else, went public with his or her diagnosis, it does not mean that it is okay for their employer (or the Wild’s General Manager, who represents this team/employer/NHL) should publicly announce how they project their employee’s personal business will affect business.