Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
Editor's Note: Oops, the carnival may be a week late, but some material is timeless. My apologies for the delay. By the way, if you have posts you'd like to share in next week's Carnival, please send me the links.
He was surfing the net after dinner. I sat on the couch with my pen and legal pad and said, “Are you up for being interviewed tonight?”
“Excuse me?" He looks up and sees that I'm serious. "No, not really.”
“Okay, but we’ll do it anyway, k? You’re never going to be up for it so we might as well just do it now.”
“So can I go ahead with my first question?”
Long pause, then he replies, “Hey, I think we should open up a new savings account.”
Me, not willing to change the subject,“So, first question: do I ever annoy you?”
“Sure. When you interview me about stuff.”
What’s the most difficult part about living with MS?
Not being able to walk. Kind of inconvenient.
There’s a lot about MS that people don’t know about. What are some of the things about your disease in particular, since every case of MS is different, that your friends and family may not know?
Heat is my kryptonite. Any relief from heat is like a power-up on Super Mario Brothers. Like getting in a cold pool in the summer, it’s a complete recharge.
I wear a toe separator daily because my toes clench up and it's hard to walk around on curled up toes.
I've been constipated for 4 years. Try that on for size. You can quote me on that. You can print that. [Laughing]. Which also has its benefits: you use less toilet paper.
I get fatigued very easily. I'm tired frequently throughout the day. I could take a nap at any second of the day. Except for at night when I want to sleep. I go months at a time without sleeping through the night.
I hurt myself every time I get into the shower. I can’t lift my leg up and over the bathtub, so I slam my shin into it every time.
It’s also difficult for me to climb in and out of bed because I can’t lift my legs up.
I use a cane on a daily basis, I use a walker sometimes—that’s very new—and I use a wheelchair for long-distance things that would be impossible for me to do otherwise—like exploring New York during our vacation.
I don’t have much balance. Even when just standing still. I could fall over with a strong gust of wind…which is where my walker comes in handy.
I take 7 pills a day.
And I just can’t go somewhere spontaneously. There’s a lot to think about beforehand—like where’s the nearest restroom? Will there be stairs? Is it worth expending all of that energy? You have to think ahead.
Why don't you sleep through the night?
Because I wake up to use the restroom. Four different times. An interrupted sleep is not a restful one.
Other than your trouble with walking, what are one or two other symptoms that are the most bothersome?
Having to go to the bathroom frequently. And twitching.
For those that don’t know, explain a little more about your bathroom and twitching problems.
My brain just doesn't communicate smoothly with my bladder, so it doesn't empty fully, or quickly, and the process just doesn't work like it's supposed to. And the twitching and muscle spasms are caused because the myelin (insulation) on my nerves is frayed. It’s like a sparking or frayed wire, which causes my legs to twitch and spasm. During inconvenient times. Like when I’m trying to sleep.
What’s the best part about having MS? If there is any?
It gives me perspective on life. It helps me to empathize with people and to learn to put myself in other people's shoes. And it has helped me to become more patient, since I am literally forced to go slower.
What are some daily tasks that you dread?
Walking to and from the car. Walking anywhere, actually. Handling sharp objects or hot items in the kitchen.
Do you dread tasks like getting dressed, or getting in the shower?
No, I've gotten over that.
So mostly the big things then?
Yeah. Also walking from the couch to the stereo to turn it off, that’s hard because there’s nothing to hold on to. In general I also dread doing anything out of my comfort zone...anything that would throw me off. I have a routine, for example, always using the bathroom right before I leave the house, and I feel more comfortable going through those routines. I like to know what I'm going to do and anything that would put me off my course is problematic. I need to know what's in front of me.
Do you think that people have a good idea about the daily struggles you go through?
No. It's an accomplishment every day that I get up and live my life. Everything I do—going to work, coming back, getting back up to the apartment is a huge accomplishment for me. Including small tasks that you'd otherwise take for granted. Like, I think about falling when I'm brushing my teeth or with a Q-tip in my ear.
A Q-tip? Seriously?
Yeah. Seriously. And preparing food for myself is a struggle. Walking back and forth from the stove to the fridge or counter, carrying ingredients, with the ever-present thought of falling with food, or with hot stuff and sharp objects.
For those of us without MS, is there a way you can describe what you feel like physically so that we can try to imagine how you feel?
As far as the walking, I think I've pinned it down to comparing it to trying to walk around with cement blocks on your feet that never come off. And you have to go the bathroom—fast—but you've got these cement blocks on your feet. Also, just in general, picture your body not responding to anything that you tell it to do.
If there is one thing you could do on a daily basis that you can’t do now because of your MS, and one thing in general you could do, what would it be?
A daily thing would be, I would run. Even though I hate running.
And even though we hate runners?
Yeah. [We don't actually hate runners, we're just jealous of them].
What about a one time thing?
Learn to surf.
Cause you love the ocean?
What can others do to make life easier for you?
I never mind when people open doors for me. Don't ask me what's the matter with my leg though.
Yeah, but isn't that just a human reaction of curiosity? Isn't that your opportunity to educate people and raise awareness about MS?
Yeah. But I don't always feel like doing that.
Okay, what else?
Don't feel sorry for me, don't treat me any different. Don't ask me if I want a piggy back ride. I know people are trying to help move me, but literally the logistics of the piggy back ride don't make sense for me. I can't jump to get on your back, my legs don't bend to wrap around you, my legs just hang there. It doesn't feel good. It's annoying.
We know you are affected physically by MS, but do you feel the effects of MS emotionally or mentally as well?
Well, not being able to walk kind of messes with your head. That’s a big thing to wrap your head around. Also, people stare at me, and not just because I’m really really really good looking.
How do you feel when people stare at you?
I can’t blame them. You see somebody walking around funny like Frankenstein, as I've been told, you think, “that sucks” or “that's weird.” It's just human nature.
Have you felt that MS has held you back from accomplishing anything these past 4 ½ years since you’ve been diagnosed?
I've wanted to swim in the ocean the couple of times we've been at the ocean, but haven’t been able to cause my legs won’t move. But with your help at least I've been able to get into the ocean. I don’t like not being able to go on walks with you or riding bikes with you.
So mostly physical things?
Yeah. Being a little restricted at events, concerts, baseball games. Even though we've turned that into a good thing with handicap seating.
Are you happy?
Probably happier than I’ve ever been. No, definitely happier than I've ever been.
How do you manage to be so happy despite all of the obstacles you face daily?
Mostly the weed. Joking. Obviously because of you. You not letting me be defeated or down. And just being able to appreciate all of the good things that I do have that make not being able to walk seem minor.
There is a real connection between MS and depression, like any other illness. Are you depressed or have you ever been?
No, I get frustrated. Looking back, early on, maybe I was. I don't necessarily know, but I know mentally and emotionally I'm in a much better place than I was early on in my diagnosis. I don't know how much going through chemo had to do with that. I think it did have to do with getting chemo and how poorly I felt from that. And how up and down I had been physically.
What was the hardest thing about chemo?
Feeling like shit all the time. You just felt terrible.
Any good things about chemo?
I felt fraudulent going into the hospital for my treatments because you're surrounded by people who are literally dying; and I'm just in there because, “oh, I can't walk that good.” It's humbling. Once again, it makes you see there are a lot of people in the world suffering and some of those people don't have any support. It makes you think that you have it pretty good.
Have you ever felt angry or resentful that you were dealt this hand in life?
I was pretty angry for a while. The first couple of years. I suppose I was angry at God and didn’t ever want to go to church.
What about now?
I think I've reached the point of acceptance. There's no point in being angry; it's a lot more fun to be happy.
Do you feel that you have a relationship with God now?
Yeah. I mean, I think I always had before, but I've rekindled that romance. [Laughing]. One time, two times, three times my Savior. [South Park reference].
How has MS affected our marriage, if you think it has at all?
I feel a lot of guilt. To be honest, it's as much your disease as it is mine. I feel like I hold you back in doing things. At the same time, I feel like we've been through a lot of difficult things together and I know I can count on you for anything. We have more of an intimacy. I feel like we've become closer because of it. I feel bad because you've sacrificed for me. You spent your days at chemo with me when you should have been studying.
Do you ever feel like you ever use MS as an excuse not to do something you just plain don't want to do?
My philosophy is that I don't ever want to say, "I can't," but I know I haven't necessarily followed through with that. But I always keep that in my mind. And that's something that I'm always working on. There is one thing—maybe with Saverio—sometimes I’ll tell him I can't go solve a mystery with him because I can’t walk, but maybe, maybe, if I dug down I could muster up some energy and make it. But you know I'm trying to live my life by my favorite quote, “A ship in harbor is safe, but that is not what ships are built for.” But it took a long time to get here. In the past I might not even try.
Is it easier or harder for you now to cope with your disease than it was when you were first diagnosed?
Even though you're worse off physically now than you were then?
Yeah. Maybe because you know now that you're gong to struggle and you lessen your expectations. You just learn how to cope. It's not as new; it's frustration but you just get used to it and adapt.
What are your biggest fears related to MS?
Falling down in front of a moving car and getting run over. Falling while holding a knife. Dropping boiling water on myself. Remember the hot gravy incident? And hitting my head on cement during a fall.
Do you fall frequently?
Lately I’ve had a couple more falls than usual.
Are you ever scared that one day you'll be wheelchair bound?
No. Because I had four years to think about that possibility and since I already have a wheelchair for stuff, it's something that you prepare yourself for. At this point I'm not going to think that I'm going to end up in a wheelchair. I'm going to hope that I don't. It's not a fact that it will happen. It's possible, probably probable, but not a fact.
What are your hopes and dreams?
I'd like to go on some fun adventurous vacations with you. Anywhere with a beach, more baseball road trips, Napa Valley. I'd like to just live a fun life.
Is there anything that you have accomplished in the 4+ years since your diagnosis that you may not have thought possible?
I got married. And went on an epic baseball stadium road trip. And swam in the ocean...kind of. Kind of.
Am I annoying you now?
No. I love you. Alessandro was diagnosed with Multiple Sclerosis in August 2007…two years after we met and 1 year, 364 days after I knew I would marry him. This is the first of what I hope will be several blog posts, which will touch upon his life with MS and the trials, tribulations and triumphs that come along with it. We’ve got lots of ideas and stories to tell…it’s just a matter of organizing our thoughts. Thanks for anyone who reads and who is interested in our story.
This concludes the 108th edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on March 1, 2012. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, February 28, 2012.
Now that Valentine’s Day has come and gone, it seems to be a good time to talk about REAL romance. As we are bombarded annually with images of red roses, pink hearts, boxes of chocolate and sparkling jewelry, it becomes too easy to believe that a person in a relationship should expect these overly commercial expressions of affection. They are absolutely not necessary and do nothing to strengthen bonds of intimacy (however it is nice to know that someone went out of their way to do something nice for you, any time of year).
"Romance is the glamour which turns the dust of everyday life into a golden haze." -- Elinor Glyn
Note: Please click through and read this post to the end. I REALLY was flabbergasted and befuddled. :)
There I was this morning at the pharmacy with my mouth gaping open. The pharmacist had said, “You just need to sign here. There is no copay.”
What?! I didn’t owe anything? That can’t be right.
I knew that I needed to fulfill my insurance’s $100 deductible for prescription medications for this calendar year. I even had my credit card in hand ready to swipe through the card reader. Ready to pay the big bucks to bring home my precious one-month supply of Nuvigil (which I take to combat MS-related fatigue on occasion).
“Why is that? I know that I owe something,” I said.
My pharmacist pulled out a brochure which included a plastic “Nuvigil Prescription Savings Card” from the pharmaceutical company. It clearly advertises “co-pay as low as $5 on your prescription refills.” A footnote at the bottom of the front page states that this “offer [is] limited to insured patients only.” Limitations apply.
In honor of Valentine's Day, please enjoy the following story about how Rob and I met.
When I met Rob over 6 years ago, I did not ‘have’ MS nor RA. I was just a regular, seemingly heathy, person who was ready to meet someone. Although my medical records did have hints of what was to come, I carried no significant diagnoses.
We were set up on a blind date through a local dating service. Rob’s life and interests were described to me as were mine to him. When we met and compared notes, we both laughed at how we were described to each other. In fact, from that description, I wasn’t quite sure that Rob and I would have had enough in common. But he saving grace was that he had played cello through college, even performing in a regional orchestra. Now THAT was something interesting to learn about. It’s funny….he was told that I was a teacher, omitting the part about my career pursuing music.
Note: The story told below begins in 2010. My mother is doing better and is about to undergo her 3rd procedure to combat chronic bleeding. Read more details at HealthCentral.
We didn’t realize just how ill my mother was. As my mother walked into the emergency department, her shockingly low hemoglobin (Hb) level was 3.5 g/dL. Normal hemoglobin levels for a woman range from 12.0 to 16.0 g/dL. The nurse confided that she had never seen such low hemoglobin in a person who was conscious much less alert and ambulatory (however weak). The doctor said that such a low Hb level could cause a heart attack.
Hemoglobin is the protein molecule in red blood cells which carries oxygen throughout the body. According to the Mayo Clinic, “a low hemoglobin count is a common blood test result. In many cases, a low hemoglobin count is only slightly lower than normal, isn't considered significant, and causes no symptoms. A low hemoglobin count can also be caused by an abnormality or disease. In these situations, a low hemoglobin count is referred to as anemia.”
A patient who tests negative for JC virus antibodies and who uses Tysabri may feel like jumping for joy at this negative test result. However, the the FDA stresses that “patients who test negative for anti-JCV antibodies are still at risk for the development of PML due to the potential for a new JCV infection or a false negative test result.” It seems obvious that doctors should consider testing patients prior to beginning treatment or during treatment if the antibody status is unknown. Patients should also consider periodic re-testing for those who previously tested negative for the anti-JCV antibody as a person might later become exposed to the virus.
For the past couple of years, discussions of Tysabri, PML, and the JC virus have been common in the MS community. Medical professionals have known that a reactivation of the JC virus is responsible for the development of PML in some patients. But until now there had not been a commercially-available laboratory test which would reliably test for the presence of anti-JC virus antibodies in a person’s blood. Now available through Quest Diagnostics, the Stratify JCV Antibody ELISA test is manufactured by Focus Diagnostics of Cypress, Calif. The test is for professional use and by prescription only and is to be performed only at Focus Diagnostics’ Reference Laboratory.
The dampness is frightening. But not yet. It will seep through and make a rain in my bones, i know. A deep murky mixture of water and rubble climbs slowly up the side of the bed. We are awash on our beds, screaming at swimming buses swinging round like boats. But I am asleep. Through closed eyes i watch. They are collecting at a building. At the base of a hundred steps. A building, once magnanimous, now crumbling. They kneel as water fills its cracks and fissures under a dying sun. A stranger comes to lie beside me. Tired perhaps. But i am irritated. I turn over. I am asleep. Let me go, my precarious dream. Of a damp, wet and dying world…. Let me stay. A drunken awareness tugs at my lids. The expected, pain, finds its way in. Shoots through, pinning down my shoulders, and finds its nest in my hip. I cannot scream anymore. I cannot cry. I am awake. My pupils dilate and contract searching for my will. I dont know how well i will be today. But it is a new day. And it has begun.
There's a general theory out there that everyone who suffers a loss goes through five stages of grief in order to come to terms with what or who has gone. In fact, many people believe these stages are more applicable to someone facing an illness or disease rather than someone who has actually lost someone. And I'm starting to understand why.
Because while I always state, very clearly, that I am still 'me' - of course having MS has changed me and coming to terms with 'Catherine who has MS' hasn't always been an easy ride. There's no doubt in my mind that I've grieved for the me 'before'.
So, in case you're wondering, the five stages are denial, anger, bargaining, depression, and acceptance.
The stages don't always work in this order and a few theories I've had a quick read at also say that they can pop in and out at different times. For me, unbelievably, the first stage I encountered was probably the one most people face last, and that's acceptance.
On diagnosis I was very stoic, determined and I suppose this is because I finally had a reason for the previous months (even years) of feeling unwell. Finally I had a name for everything that I thought I was imagining.
But acceptance doesn't mean that I haven't had days of the other four stages. In fact, I started writing this post some weeks ago when I was going through a 'low' period - I guess that would be the depression stage. And there wasn't anything that triggered it. I simply felt incredibly emotional and teary-eyed. And it was horrible.
Along the way I have also had moments when I've felt the anger bubbling under the surface until I can hold it in no longer, shouting out in pure frustration, 'Why me?' Because I am bloody angry. I'm angry that no matter how hard I've worked, how much love and care I've shown others, that this blasted illness still choose me.
It's often after an angry moment that the bargaining stage takes over. In my mind I can hear myself saying, 'Maybe they did make a mistake. Maybe if I can just be a better person the MS will disappear.'
But in my heart of hearts I know it's going nowhere. I mean, the NHS wouldn't have me injecting myself with very expensive medication if I didn't have MS now, would it?
Ah, and in creeps the denial - without me even realising it.
If only it were true.
I was a physical person. Not a rock climbing, landscaping, house renovating, kayaking kind of physical. Rather I was a cookie baking, soup from scratch making, closet organizing,decorating, wallpaper hanging, leaf raking, dog walking kind of physical. I loved the feeling of accomplishment, not so much from "creating", but from "organizing". That was before Ms.
I worked as an optician for over 12 years. It was a career change for me coming from the field of retail. I thought I wanted to "help people". What I discovered was that my favorite part of the job was decorating the frame boards and keeping our desks tidy. I preferred straightening out our work area. Not so much the fabrication of the glasses though. It is a precise skill that uses metal and hard objects to form functional devices. I would rather work with soft fabric and scrunch it to make it fit. While opticians work in millimeters, I would rather measure an ooch or a scowtch. If you sew, you know what I mean! And then, sadly and admittedly, I discovered I was not so much into the "helping people" part of opticianry. The reality is it was more of a my glasses are crooked kind of complaining and whining. Yeah, there were more than a few people who truly appreciated my skills to realign their progressive lenses or reshape their bent frames. I loved the people who gushed appreciation when I simply changed their nosepads. Such a small thing to create huge comfort. But, unfortunately, one "oh shit" would wipe the whole slate clean. The patient who complained her glasses were too big or too small, too blue or too red were the majority of the customers.
I worked in a large office where I could have contact with the MDs and ODs if I wanted to. In general, they tried to project an atmosphere of openness, but for the most part, I felt my questions were irritating them. Oh, not all the docs! Some sincerely appreciated my attempts to help their patients! But again, one oh shit wipes the whole slate clean, and I would become acutely aware that I was cutting into the doctors chair time. Redoes cost money, and it would be a finger pointing battle of who messed up: was the prescription wrong, or were the glasses made wrong? Oh well, such is the responsibilities of every job. No matter where you work or what you do, that is what it means to be accountable.
As MS waged its relentless progression on my body, my left side became weaker. I could no longer adjust or fix glasses. After I fell once, I knew it was time to rethink things. After I fell the second time, my husband became concerned. The true wake up call came one day when the fire alarm sounded. An electrical problem on the 3rd floor of the building caused the alarm to go off. As we all headed outside to a cold winter afternoon, my friend went to get my coat. Others waited while I slowly navigated the stairs. They were worried about me. In reality, this was not good. I knew if it had been a true fullout disaster, they were risking their own safety to assure mine. It was that event that forced me to acknowledge that it was not right for me to continue to work.
It's coming up on one year that I've been home and acquired the dubious distinction of the label disabled. I've spent the year acknowledging the limitations MS has caused. I realize the importance of having a "can do" attitude rather than focusing on what I can't do now. I know I should use this life changing experience to rediscover myself. But I'm not an artist or a writer. I'm not a stargazer or a theologian. I don't have the answer yet to who I am or what I'll do. But I do have plenty of time now to think about it.
if only the makeup could extend the length of the body
concealing the disabilities
there is no hiding that
This concludes the 107th edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on February 16, 2012. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, February 14, 2012.