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Tag Archives: cynicism

Seems I blew by injection 500, 86 nights ago! Should be 587 but, I’m trying to stretch the last few injections of Copaxone seeing as how they are the last for a while. I’ve got my application out to AssistRX and hopefully I qualify. I don’t know what options i have other than that. I don’t make enough on my disability check to cover my rent, phone, electric, food for myself and a three year-old, a monthly “High-Risk” insurance policy, and the inevitable co-pay. Our esteemed governor has decided that if you make more than $900 monthly on disability, you no longer require medicaid. Does he not know that the median rent in New Jersey is around $1000 a month, unless you live in a subsidized project, which has a 2 year plus waiting list.

I guess he’s too busy embarrassing our state with his Tony Soprano antics, campaigning for Mitt Romney. Funny, Gov.Christie comes out against “The Jersey Shore”, and then acts like a member of the cast every chance he gets. Enough…

Day 597-Back of right arm
Had to ask mom for help tonight with my injection, as I tried my best to keep the shots 2 inches from the previous weeks. I’ve been having issues with body temperature lately. Last night and tonight where 37* outdoors, my thermostat set to 65* with drafty windows and a huge draft from the A/C still in my bedroom window, and I had to place a cold towel on my head and my T-shirt collar was/is moist from sweating. I don’t know wat else to do…open a window? Oh the joys of MS.

Be well!

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Yeah…I’m a Star Wars geek.

Day 294: Right hip.
Injections to the hip always suck for me, even after 82 injections to the hips.
There was no site reaction, no itchiness, just the the “OH WOW THAT SUCKS!” sting of the injection.

Went to see my pain management doctor today; got scheduled for a few injections to my spine. Yipee *can you feel the sarcasm?* But, a little pain to get rid of the knife wedged between my vertebrae is well worth it.

Visited my new neurologist today too. Was very surprised that he spent 45 minutes discussing my disease, the diagnosis, the events surrounding the diagnosis. The doc was like an MS detective. I was really happy to see he was very knowledgeable about MS, research, new drugs etc…even though I’m his only MS patient.

After completing my physical examination; reflex, sensation, etc. He came to the conclusion that my back and leg problems were not caused by MS but, rather my obesity. I explained to him that I had gotten my weight under control on several occasions, once losing almost 100lbs. through a vegetarian diet and exercise but, my inability to exercise now was hampering any serious weight loss. He advised me to give it an honest try at losing some weight on my own again.If my mobility issues became a problem he would recommended Lap Band surgery and said he would aggressively seek it through my primary care Dr.

The thinking being the weird nerve sensations I feel, aren’t caused by my MS but, rather by my extremely high blood sugar. My leg weakness and knee problems, fatigue, etc. all problems reduced by losing weight.

Well, I’m not totally for it but, at least it’s not vanity causing me to do it. And the band can always be adjusted once my weight is under control. 😦

The Neurologist also ordered some blood work, wanting to be sure of various things before putting me on Gelinya, the oral MS disease modifying therapy. So no more needles after the blood work, no more self injections. This, the doctor said, was the one thing he could do on my initial visit. Since, I had been reffered to him following an MS event, he had no fear of disrupting a treatment that was working well for me.

He asked about my progression, commenting “Yeah, that’s what it does, picks you apart.” When I bumped into him trying to climb the examination table and said “I’m sorry”, he grabbed me by the shoulders, helped me position myself on the table, and replied “You, have NOTHING to be sorry about.You’re sick.” Echoing what my big brother says every time he hears me apologizing for everything.

On a side note: When I switch from disease modifying therapies….what will I call my blog???

Dr. Lamazov also said he’d brush up on Ampyra, the MS walking drug, for me because he didn’t know enough about it to comfortably write dosing amounts, etc. Wow, a doctor who, not only obviously had been paying attention at the beginning of the visit but, was also open to learn a little more about what I wanted. What an AWESOME neurologists’ visit.

TODAY WAS A GOOD DAY!

BE WELL, LIVE WELL, NO REGRETS

While all my friends and couples around the world marvel at the beauty of their lover’s every kiss. I wonder how many others were kissed the same way. As they revel in the ecstasy of every touch, I’m reminded of how simple it is to replace someone else’s name with mine. It’s not that I don’t believe in love, it’s just that I’ve been on the wrong side of much too many times to think that my imagined version of “love” is the only, truest, and best version.

Love is a word that can mean many things to many people. I was once told by a childhood love affair of mine that, “I just don’t know, it’s like the magic is gone.” I answered that there was no such thing as magic and we didn’t live in a fucking fairy tale. How could I have known that I’d gotten the gist of it at the ripe old age of 16.

Don’t get me wrong. I was once a huge romantic. I listened, in the dark, to prophets of doom on the radio but, I always imagined someone who would see through to everything in my soul. A John Hughes happy ending. The movies we grew up with that made us think everything was good and fair in the world. And like Jay and Silent Bob after being led down the road to Shermer, Illinois. We found out, THERE WAS NO FUCKING SHERMER, ILLINOIS. It was all part of someone’s wishful thinking. John Hughes obviously spent his high school Years fantasizing about those same scenarios he wrote about.

But, the world is not Somekind Of Wonderful, with a happy ending for the kid from the wrong side of town, the punk, tomboy romantic, the poor lost rich girl, and a fitting end for the bad guys. It’s far from as perfect as we think that would be.

I learned this when I was 18 taking my best-friend’s girl to an abortion clinic. It didn’t happen, thank god, but after the baptism it felt like it for me, with as much as I saw that little boy. But, this is the way of the imperfect world we live in. 17-18 years later, we live on and hope things turned out right. I hope MY little boy understands why his parents split up, and he grows up loving both of us, and grows up well. But, that’s all we’re left with is hope.

And for a cynic…..that’s nothing at all.

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