Sunday, August 23, 2009
But people also ask because they love and care about me and are truly interested in how I am feeling that particular day. I often find myself responding with, "Hanging in there," or something with at least a slightly positive note to it.
I do this for two reasons: A) Hearing someone you love tell you that they are actually feeling quite horrible, physically and/or emotionally...well it really feels crappy to hear that, especially when that person has a chronic disease and feels crappy...well, a lot of the time. This actually ties in with B) I hate disappointing the people I love, even in the slightest bit, by acknowledging that I am not feeling well and that these various diseases are, at present, kicking my...well, you know.
And while I have no doubts that there are a great many people out there that care for me, the reality is also that people have their own crappy stuff to deal with. Life is full of horrible, messy, painful things and at any given moment people are surrounded by their own demons and their own trials to overcome.
With some diseases you hear people say, "I'm going to beat this thing!" or "I will get through this." I desperately want to be able to say, "I am going to beat this thing." I want to be strong. I want to be a fighter. But how do you "beat" something that is incurable and progressive (and that is not exactly responding as we had hoped to the treatments that we keep throwing at it)?? It is one of the frustrating things about chronic diseases. They are a marathon...a never-ending marathon with lots of really steep hills and no finish line.
Many days I feel as if I am just treading water. I try to keep my head up to avoid another relapse...and yet they still manage to find me. I swim as hard as I can to keep my corneas from drying out and inevitably end up with painful inflammation every 4-5 weeks. I balance the various physical pains alongside my sanity and I fight to hang onto hope while battling the MS-depression-demons that are often chemically altering my brain. I find myself grasping onto anything I can if I think it might help me float awhile longer.
Today I baked.
I baked cranberry scones. I baked peanut butter shortbread cookies. Then I put a pork chop with yummy sauce in the crockpot for dinner. Then I cooked some chicken so that I can chop it up and eat it in salads this week when I am too busy with schoolwork to come up with anything for lunch. If you know me (and if you are reading this, you most likely do), you know I do not consider myself a cook of any merit. I am no Martha Stewart. My friends Alice and Steve sent me an apron that has a big treble clef (a symbol used in music) and says "Treble in the kitchen." I love the musical reference, but I also love the fact that it is true! I am trouble in the kitchen! And yet today I was Martha Stewart and Paula Deen and Julia Child. I put on my "treble" apron and mixed dough and kneaded it with my hands and rolled it out and cut it into adorable shapes. And standing there with my apron on, my hands immersed in dough...well, it just felt good. It felt like playing with play-doh, getting my hands all messy, focusing on nothing except the wonderful feel of cookie dough.
Sure, I have a list of things I need to be doing, that I should be doing. But sometimes you gotta tell the list to take a rest and spend some time doing exactly what you want to do and nothing more. Maybe you need to drink tea and read a few chapters of a novel. Maybe what you need is to be a couch potato and catch up on all the things on your TiVo. Perhaps you need to hire a sitter for the kids and take yourself to see a movie. Maybe what you really need is to get out some coloring books and some crayons and spend the afternoon letting your inner child play (right, Jan?). Or maybe you need to bake lots of fattening, carb-filled goodness.
Sometimes you just gotta listen to your heart and ask it, "What would make you feel better? What do you really need today?" And then you ignore your brain telling you to do the laundry or finish that project at work or a million other things it is yelling at you to do.
In times of rough seas when your arms are tired of keeping you afloat...during those times, my motto is: Whatever gets you through the day.
Wednesday, August 19, 2009
It is usually on Day Two that I say, to myself or to no one in particular, "No! I cannot take another day. I am skipping Day Three. I don't care!" I don't know, but right about now I am tempted to start yelling No! already and I still have 2 days to go. And then I remember that Days Four, Five, Six and Seven are no walk in the park either, spent still reeling from the steroid effects and then coming off being pumped full of steroids, leaving me with serious weakness, muscle cramping and more.
In its defense, I am partially blaming Solu-Medrol for the craptacular relapse symptoms I am experiencing as well. It has been 10 days and unfortunately they have grown exponentially and while the numbness and such is annoying, it is the nerve pain, arriving like an army to trample all over my body, that has me unable to sleep. Well, that and the heart pounding, elephant-sitting-on-my-chest-feeling and steroid induced restlessness. But I think its mostly the pain right now. Much akin to a blowtorch firing at various body parts for undetermined amounts of time.
So the idea is that the Solu-Medrol will make the Bad Relapse Man go away more quickly and permanently. But while I am still able to make jokes and find the humor in things today...but very soon my body will be inhabited by a series of...well, dwarves.
First the pharmaceutical info:
Oral steroids ake oral corticosteroids (ex:Prednisone or the Medrol Dose Pack) are very powerful anti-inflammatories. What's really cool is unlike certain asthma inhalers, which are steroids that go directly to decrease respiratory inflammation, the oral corticosteroids affect the whole body. They are used in all types of autoimmune and rheumatic diseases, Crohn's disease, they can help treat penumonia and skin diseases as well as some allergic reactions. When you think about it they are pretty incredible drugs. They have a price to pay, including a Very long list of short-term and long-term side effects if used on a frequent basis.
Still, they can treat diseases that nothing else out there can treat, and they can drastically improve quality of life for the patients of such diseases.
I digress from the dwarves...
(To paraphrase one of my favorite authors, Stephen White):
When someone has bad bronchitis or bad allergies or a rash they are often given oral steroids as a method of treatment. Common dosage for these oral drugs ranges from 5mg to 50mg. When an MS patient is being treated for an acute relapse, they are given 1 gram of Solu-Medrol, infused directly into their veins...for 3 days in a row. So grand total: 3 grams. Since I just passed my math class in college, I can tell you that is 20 to 200 times the normal daily amount prescribed. In fact, when I tried the high-dose oral steroids back in Nov, my doc actually had to write out "six hundred milligrams" because too many times a pharmacist has assumed the doctor didn't have his coffee that day and miswrote "600" instead of "60". The point of all this being, even 50mg of steroids makes you irritable and jumpy and nervous. 1000mg into your veins, well, you can use your imagination, because I sincerely hope you never have to experience it firsthand.
This is where the dwarves come into the picture. As all these drugs are being pumped into the MS patient's body, it quickly becomes apparent they he/she has been possessed by all 7 dwarves. Unfortunately, they are not the same 7 dwarves that you might remember from that lovely fairy tale with Snow White. Oh, no. There are some familiar faces such as Grumpy and Dopey. But there is also Angry, Bitchy and Cranky. Sad to say, Happy and Sleepy will make very few and very brief appearances over the 7 days.
If you live with a person undergoing such treatment you quickly learn that in these 7 days the patient will lose most of his/her sense of humor, ability to take anything in stride and everything you do will be wrong, irritating or downright infuriating (Sorry, Chris. You know I really REALLY love you, right??) But it's not the patient's fault! It's those damn dwarves, I tell you!!!
I would sign off saying I am heading to bed, as most normal people would do at such an hour. But I would be lying, knowing that the next few days I will be catching sleep whenever the dwarves and the steroids allow, in snippets here and there. I will make a conscious effort to channel Happy whenever possible. And I will remind myself as often as I can that This Too, Shall Pass. (Thanks always for that one, BBT). And by next week maybe I will feel normal again. Well, not Too normal. I mean, who wants to be "normal", right? ;-)
Monday, August 17, 2009
Thank you to all who were able to attend our event last Saturday and help us raise some $$ for a wonderful nonprofit organization in a tough economy. We had a great turnout and hopefully everyone had a great time. All the band members played and sang like true rock stars, my neurologist made a special guest appearance and my voice held up long enough to sing backup on five or six songs and sing lead on one.
Most importantly, we raised around $4,500. Not bad at all.
My voice is still unreliable. Still scratchy and hoarse, still having problems with volume, but I expected as much. I asked more of it than I should have right now. By the way, my neuro has referred me to the Emory Voice Clinic to be evaluated and start voice therapy with their specialists. Not only are they knowledgeable in all kinds of voice disorders, they also work with singers, which I think will be helpful since singers use their voices in different ways than non-singers. As upsetting as the voice issues are (and they are very upsetting), I have also been visited by two new symptoms that are quite puzzling.
Numbness (the "technical term" is paresthesia) is a very, very common MS symptom. Something like 90% of MSer's experience numbness at some point in their journey. When nerves are damaged, as they are in MS, it can result in numbness in your arms, legs, midsection, face or wherever it wants. And the really puzzling thing is that the numbness can occur in varying degrees. It can just be a decreased sensation where your foot feels funny, and you can't exactly feel the ground. Sort of feels like there are a bunch of pillows attached to your feet. Or numbness can mean total numbness, very similar to how it feels when your arm or leg or foot falls asleep. That numb, tingly, pins-and-needles feeling.
By last Sunday morning, I was numb from my hips all the way down through my toes. By that evening, my entire abdomen and most of my back had joined the party, so I was basically numb from the chest down. In addition, I am experiencing something called Lhermitte's Sign. Something akin to sticking your finger in an electrical outlet, I would imagine. It isn't painful, per se, just extremely uncomfortable when it happens. And it is happening every time I bend my neck forward even the slightest bit.
To say that all this feels bizarre is quite the understatement. I talked to my nurses twice last week and we are "watching-and-waiting" to see if this is a pseudo-exacerbation (i.e. brought on by an infection, stress, fatigue) rather than a true relapse. To be on the safe side, I booked an appointment with the nurse practitioner.
The whole thing terrifies me. I don't know that I can emotionally handle another relapse right now. I really, really need to make it longer than four months without going into Relapse-Land. I am exhausted with the physical and emotional turmoil of being an "unstable" MSer. It is frustrating to feel that you have so little control, except for the option of cutting out all fun activities and avoiding all stress (good or bad) in hopes of staying "stable."
So in theory, I could stop participating in anything that might be stressful to my body, including singing with my band, helping my stepdad/stepsister with their shows, volunteering for and raising $$ for the NMSS, going out to dinner with friends, going to school, doing anything that involves being outside in the summer...the list could go on. Unfortunately, that's just not my style and I have been fighting it tooth and nail for two-plus years. For a former social butterfly whose social/work/volunteer/event calendar was always maxed out, it is devastating to feel I have to say no to so many things I love in order to "maintain" my health. Which is comical, because what is it I am trying to maintain? Maintain this instability? Regardless of what I do/don't do I seem to be facing relapses every three to four months.
If I hadn't sung a few songs with my band on Saturday, would I be able to feel my body right now? Or would it have happened anyway? I am sorry if I sound angry, but it's mostly because I AM angry! I just had a clean MRI. Shouldn't that buy me at least six months of no relapses and no crazy things like my entire body going numb?? I am really trying not to let it all get me down, but it's difficult sometimes. Like many things in life, there is no black and white with MS. It's a lot of gray and you just gotta make the best decisions you can and hope for the best.
To look on the bright side:
1) I can't feel my injection needles pierce my skin right now, which is very nice.
2) The anti-acid reflux diet has gotten me down to the same size I was my senior year in high school. So even though I hate this stupid GERD diet, it got me back into my skinny jeans...and then back out of my skinny jeans because they got too big.
3) Hmm. I don't have a 3 yet. I will keep working on one...
Until I can get more info, I am trying to lay low, gearing up for classes to start back on the 24th. I am trying to avoid the heat and I am being super careful when I walk because you never realize how much you rely on feeling the ground until you can't feel it at all.
And since I can't feel much of anything below my chest, several times a day I have to look down to make sure I am actually wearing pants. I mean, I haven't yet forgotten to put on pants, but when you can't actually feel the pants on your body, it's always best to double-check these things. :-) C'mon. That was funny, right?
Even on really bad days, ya gotta still find the humor in things, ya know?
PS- As this article went to print, the common relapse-partner-in-crime Nerve Pain has arrived on the scene and the author has just returned from her appt at Shepherd where all parties have agreed that 3 days of IV Solu-Medrol would be the wisest choice at this time. Infusion should begin in the next 2 days, followed by 3 days of sleeplessness, irritability and serious carb craving. This will then be followed by 3-4 days of weakness, more irritability, continued carb cravings and a small pity party. Happy thoughts, smiles, sympathy and carb-related foods are all welcome at any time. :-)
Monday, August 3, 2009
Whether or not my voice will hold up through a whole show remains to be seen, but no matter. I will be there rockin for a good cause...so you should come rock with us, too! Talk about an economy-friendly show - only $10 buys you a whole night of entertainment AND its tax-deductible! :-) Hope to see you there. XOXO