This is such an amazing story that I just have to share it even tho it's not about MS, Fingolimod, or ME.
John, my boyfriend and father of my child, has always been one of those guys who took his health totally for granted. He smokes, he drinks, and he hasn't let a vegetable pass his lips in years unless you count lettuce and tomato on a Wendy's double cheeseburger as a salad.
A year or so ago he started noticing he had no energy. He also was out of work at the time due to this recession we're not having or the depression we're not in, one or the other. He's in the construction business and people just quit building houses all of a sudden.
Probably a lucky thing for him because he didn't have the energy to get out of the recliner, let alone climb scaffolding.
Then, in May of this year, his Dad passed away. He was in his 80's and had cancer, but had suffered several heart attacks before that. His brother who isn't that many years his senior has had his share of heart attacks as well.
I think facing his Dad's mortality is what caused him to decided to see a doctor for practically the first time since I've known him. What he found out was astounding.
He had super high blood pressure. I never did find out the exact number but it was 200something/100something. But that wasn't even the really disturbing part... he also has super high cholesterol. THAT number I will never forget: 1149. No, I didn't stutter on that "1", 1-1-4-9!!
Doc gave him some blood pressure medicine and a nutrition sheet about good and bad foods for cholesterol-lowering. He said he would put him on meds for the cholesterol but couldn't because John was a heavy drinker, downing a gallon of rum per week along with countless six packs. He said "if you can get your drinking down to just 2 beers per day, then I can put you on medication. Until then, my hands are tied and you are a walking time bomb for a heart attack."
When he told me all this, I was amazed myself that he hadn't yet keeled over.
So, FINALLY he's been scared straight, so to speak, and is taking the fact that "you are what you eat" is more than a saying spouted by vegetarians and other "whole food eating, Mother Earth News reading hippies". Gee, maybe they were onto something, ya think?
Over the next 3 months I witnessed a miracle. I have lived with this stubborn, set-in-his-ways man for 14 years, and never in my life would I have anticipated the change that came over him. God himself might as well have materialized on my couch and told me the end of this season's Survivor. I wouldn't have been more surprised.
He quit eating red meat, he stopped eating starches, salt, eggs...well, just about everything he ever liked.
He started scarfing down fruit and he gave up the rum. Completely. He went from 6 or 7 rum and cokes a night to zip, zilch, nada, nyete (now I'm just showing off).
His fruit habit was darn near as costly as his booze habit used to be. The man could slay an entire watermelon and ingest it's offerings in a single (or two) sitting(s).
Green grapes were also no match for the likes of him.
He started eating tilapia with a vengence. I will conceded that the fish is fried, but it's fried in canola oil. He eats grits with them and uses "No Salt" salt substitute which, it turns out, is potassium, which can aid in lowering cholesterol.
He uses Promise butter substitute, he drinks Juicy Juice fruit juice and he doesn't eat any processed foods.
He's gone from eating only take out, (because he didn't want to eat the foreign stuff our son and I were ingesting, like broccoli -- blech!) to eating only his diet on that sheet he got from the doctor.
Also, he got into my Centrum vitamins and started taking them, along with my Fish Oil pills.
He was watching TV one night and paid attention to some ad for Fish Oil/Omega3/Plant Sterol pills that combined every good thing known to man into one mighty cholesterol vanquishing sword of a capsule.
He whipped out his credit card and ordered them.
A week later he got his 3 jars of pills, plus his one free one, plus his tiny sample of CoQ10 skin rejuvenating cream.
I didn't interfere with his new regime. I just followed his wishes and fixed his meals according to his instructions.
And then the miracle happened.
He went back to the doctor at his 3 month checkup. Mainly he did this because he ran out of blood pressure meds. When he asked me, "Can't I just call them up and he can call in another Rx for me?" I told him, "No. The doctor needs to see you to evaluate if this medicine is the right one for you, so you have to go see him again."
John's reply was classic and true to his form I've come to expect:
"That's a crock of crap! They just want to get ya in there to drain you of your last buck and try to find something else wrong with you so they can keep bleeding you dry."
I roll my eyes, knowing that he probably won't ever go back and all this has been for naught.
He calls and makes an appointment. The day comes, he heads out the door and I pick myself off the floor from where I have fainted and wait for him to return from his visit.
"You're not going to believe this!" he says, "My blood pressure was 130/80! That medicine he's got me on is working."
I see a band aid on his inner arm and know they drew blood. "When will you find out about your lab work?"
"The doc said he'd call when it comes back."
Two days later we get the phone call. I listen to John's end of the conversation.
"You're kidding, right?...."
"That's incredible! Can what I was doing really have had that much of an effect?..."
"So, I don't need the meds even tho I quit drinking so I could take them?..."
I couldn't WAIT for him to get off the phone. I darn near took it away from him so I could ask a bunch of questions like the professional patient that I am. John hasn't been sick a day in his life and knows not how to wheedle information out of a doctor.
When he hangs up, he looks at me in utter amazement and says "Guess what my cholesterol is now. Just guess!"
I say "I dunno...800?"
He says "Lower".
I say "500?"
He says "Nope. Try 106."
I'm flabbergasted. (It felt weird, too. I don't get flabbergasted often.)
"So, the doc said I don't need the cholesterol meds and to just keep doing what I'm doing because it's working, whatever it is. He said it IS possible to make a change that drastic, but most people don't have the will power or self control to maintain the changes that consistently."
He may have spared himself from his family's legacy of repeated heart attacks and bypasses.
He still smokes, and he drinks his 2 beers a day, but between his son and I we're working on him about that.
Oh, and his energy has returned! No longer does he kick back in the recliner straining to lift the remote. He's up and at 'em every day, if not working at construction jobs for pay, then working on the big construction job that is our home (in various stages of remodeling).
It's good to have him back.
Saturday, October 18, 2008
Sunday, October 12, 2008
I went on Thursday to my one month checkup of the extension phase and everything went great! I got an 8:30am eye appointment which meant she hadn't had time to get all backed up and leave me soaking in the dilating drops for a few hours. Instead, I was in and out fairly rapidly.
At one point she had me look through the thing which covers up one eye while you look through a hole with the other eye. She held a white card with a black thin-lined grid on it that had a dot in the center. Staring at the dot, I was to tell her if the lines looked wavy or anything.
"They are all double" I said.
"Blink a few times and tell me again." she said.
"Yep, they're still all double."
She whips out a bottle of drops and squirts some yellow fluid in my eyes. After I wipe the overflow off my cheeks with a tissue, she has me put my head in the vice thing (not really, but it sort of *holds* your head) while she shined a bright blue light in them.
"You have dry eyes that look like it's due to allergies. Do your eyes itch a lot?" she asks.
"Well, not until right now that you mention it. I want to rub them pretty badly." I squirmed in my chair. It was like how my nose itches whenever I fully submerse my hands in dish water.
"It's nothing. Just get yourself some eye drops and use them 3-4 times a day. That ought to help."
So I leave there and go to see my trial coordinator. I get blood drawn, get weighed, and have temp and blood pressure and pulse taken. Then they send me off to have my Pulmonary Function Test.
I check in early and sit to wait. They guy who always does my PFT stuck his head in the waiting room and said "We'll be right with you, Jeri." I say okay and thumb through a copy of AARP's magazine but I have no clue what it's about since my eyes are still dilated so I just look at the fuzzy pictures.
Some younger guy comes to get me and I swear his voice cracked as if he were entering puberty. "Come with me," he croaked. "Did you just come from the eye doctor?" he says as he checks out my paper sunglasses.
"Oh, no," I tell him, "I got these last time I was here and I just love the look."
He gave me a weird look and a wider birth.
"Yes, I just came from the eye doctor, so you can screw up all you want because I can't see what you look like or read your name tag so it's cool."
He said he was new at this and I asked where the other guy went. He said he was training him and he's "around if I need him."
NOTE:Image may not be representative of actual testing device OR actual patient. This is only a reenactment.
We went through most of the tests fairly rapidly. Then we got to the one where they use the extension contraption that I have to breath through that consists of a hookah like pipe with a hose connected to the end of it and a hole that I have to periodically cover/uncover with my finger on cue.
Turns out the important phrase in the last sentence is "on cue". The guy didn't know how to give me the instructions and *cue* me just right so between the two of us we kept screwing up. I ended up wearing out the cardboard disposable mouthpiece (for my safety) and was given a new one.
Midway through this test he is looking at some of the results and says that my lower lung volume is below the normal range and he's going to have to give me a shot of albuterol. Fortunately, a "shot" to him consisted of putting the inhaler in my mouth and depressing the canister to administer a does of stuff to inhale. No needles anywhere to be seen. Whew.
I was all panicky thinking of having to have the stuff because my son has asthma and uses a nebulizer which has a face mask and a mini air compressor that vaporizes the Albuterol so he can inhale it. It "makes his legs noodly" according to him. I've seen him get the shakes so I know just what he's talking about.
Of course I braced myself.
I did the test again and scored a 90 where I had scored a 70 previously, so apparently it worked.
I asked if I should see a doctor about the need for the Albuterol. He said the trial people will see the results and advise me but he thought it was so slight that it might even have been due to getting warn out from having to redo so many of the tests. (thanks buddy!)
So I go back over to the research department and find out that another guinea pig, um, I mean patient, from my trial is there getting poked and prodded. I never did get to see him but I did hear his voice. Sounded like a nice guy and had the CUTEST baby girl with him ever. She was probably about a year or so old and just a dumpling. I got to meet her because since Daddy was getting blood drawn, the doc took the baby on visiting rounds up and down the hallway so she wouldn't witness the trauma.
All in all it was a quick visit and I stopped to get eye drops on the way home. Turns out I'm more of a sissy about eye drops than I ever was about doing shots. I can cram a 2" needle buried up to the hilt in my thigh, but quivered with sheer terror holding that eye drop bottle above my face. Guess that's a dead give away that I don't wear contacts, huh?
The drops made them quit itching all right...they burned too bad to itch. Nice idea, doc. Thanks for that.
Anyhoo, I'm feeling great. So great that I went on the Zoofari Cub Scout trip to the Jacksonville Zoo with my son yesterday. Something I would never in a billion gazillion years do in the previous 10 years. I had a great time and kept up with everyone, didn't need a cane or chair and only rested when everyone else did.
Of course today I spent mostly in the recliner lifting nothing heavier than my remote, but I'm sensing that it's from old age and not MS that I'm sore today. I'd like to blame every ache and pain on MS, but the truth is I'm not 16 any more. Honest! I know you can't believe that looking at my picture, but I'm not.
I'm 29 and holding.
Posted by Jeri Burtchell (TickledPink) at Sunday, October 12, 2008