Tag Archives: Multiple Sclerosis

Day 4 June 4, 2009

Four o’clock in the morning and I’m awake. Starting to believe that it’s not because of the sleep schedule I was on, and starting to wonder if the steroids gave me insomnia. No real clue. Will be talking to the nurses and doctor about it later.

On to more pleasant endeavors. Last night’s dinner. Jason and Mary arrived at around 7:30 pm. Driving here, Jason saw a Greek restaurant and was tempted to go there. I had no particular cravings and the small amount of Greek like food I’ve had, (Uncle Nick’s and Basil Café) were good. Mary just wanted food. Jason went online found a bunch of other restaurants and reviews on nearby restaurants, but was sold on Demetri’s Restaurant when he read a review that talked about the flaming cheese appetizer. For those of you who don’t know, Saganaki is one of Jason’s most favorite appetizers.

It was a nice place, good décor, looked like a Greek Restaurant, with fake ivy climbing the booths, low music, loud talk, everyone was really friendly. I was worried about walking into the place in jeans, but no one batted an eyelash. We sat down and started looking at the menu. It was a little higher in price then Rockford, but I was expecting that, so no big deal.

After much thinking, on Jason’s part, (I was sold on something right away and so was Mary. We may not be very good at deciding where to eat, but once we’re in a restaurant, we know what we want.) we finally ordered. Appetizers: Saganaki, and Greek sausage. Jason ordered the spinach and feta cheese stuffed filo dough with a lemon and herb chicken soup, Mary ordered the Greek Chicken with salad, and I ordered chicken and vegetable in cream sauce stuffed in filo dough with salad.

The saganaki was fun to watch. For those of you who have never had it, it’s a piece of Greek cheese; don’t remember what kind, that is flambéed with brandy. The real stuff is flambéed with Ouzo, which they don’t have in the US. Fun to watch. Good to eat. Jason ate half of it and Mary and I shared the other half. Jason’s favorite and both Mary and I wanted to leave room for the entrée. The sausage was interesting as it was flavored with orange peel. It had a milder flavor then most sausages and was pretty good, but once again, did not want to eat too much.

The salad was tasty: lettuce, onions, tomato, feta cheese and Greek dressing. Simple and yummy. I tasted Jason’s soup. It was very nice. Had a good flavor. I’m not big on cooked lemon, which is to bad as I love fresh lemons, but the soup did not have the metallic taste that cooked lemon usually has. It was really comfort food. Would be terrific for sick days.

We really didn’t have to wait too long between each course. Just long enough to digest a little to give more room for the next course.

The entrée was divine. The chicken was tender and juicy, the vegetables were perfectly tender and the sauce was so tasty, reminded me of some of the cream sauces my Maman used to make when I was a kid. All the flavors mixed so well with the filo dough, I just wanted to devour the whole thing. I didn’t, as there were also Greek fries: two thick cut potatoes that were cooked in herbs and lemon juice. I wanted to like it, I really did, but the metallic taste was too much for me. I gave the fries to Mary and Jason. There was also thin cut zucchini and yellow squash, which were tender and yummy, and had enough herbs to allow the vegetables own flavors to come through. The filo dough was the best though. I ate half of it and Jason took the rest home. He had too. I have too much food already here that I want to eat. Don’t want to waste it and do not want to try and take it back to Rockford on Saturday, as I do not have a cooler. Sigh.

The most fantastic part of the meal was desert. Left room for desert, just in case. They had Crème Caramel. I was torn between that and the rice pudding, asked the waiter (his name was Demetri as well; but it was not his place, we asked and joked about it) and he suggested the Crème Caramel. I was easily sold on it, as I have not had Crème Caramel in a long, long time. Maman used to make it. It was one of my favorite deserts.

It was so good. Creamy with just enough caramel to coat the custard without over powering it. Reminded me of home: comfort food all the way. Jason left the table before the deserts arrived to use the restroom. He ordered the Crème Caramel as well. I told him if he hadn’t come back before I was done with mine, I would have started in on his. I was done with mine by that time and he gave me a bite of his. Isn’t that sweet? J

Mary had a walnut cake, which was moist and tasty, but the Crème Caramel could not be topped. It was so good.

The best part of the meal, as if everything wasn’t fantastic, was that Mary brought me an awesome surprise: two pieces of Chocolat. A plain truffle (probably my favorite) and a lemon basil bonbon. I had the lemon basil, as it seemed to fit the dinner better, while Mary and Jason gave themselves cancer. Love them both; wish they’d stop smoking.

It was a wonderful evening and made me smile. I love good food.

 

Woke up bad this morning. Can’t shake it. Hopefully today goes well at the clinic. I’ll probably sleep all day; then probably won’t sleep tonight. Arg. Oh well. That’s the way things go sometimes. I’ll be all right though.

Breakfast was awesome. The motel has a large Indian clientele, as I may have mentioned yesterday, and therefore have a small amount of Indian food for breakfast. They had badly made nan, fried instead of baked, probably, but still good, and a large container of this yogurt vegetable stuff. Can’t remember the name, but I discovered it at India House in Rockford and LOVE it. Had a big bowl of that and some nan. Yum. Ate too much. Once again, oh well. Tasty food is worth it.

 

Here I am at the clinic. Didn’t have to do the steroids today, which will actually get me out of here by 2pm instead of 4pm. That is really nice and at the same time, kind of annoying, as I have nothing else to do. The nurses gave me a FREE prescription for a sleep aide; I will be using that tonight so I can actually sleep. Won’t that be nice?

Andy only had to stick me once, which was fantastic. Had a little bit of pain, but once again used the breathing technique and let my right arm relax and tensed the rest of my body. Thanks to Nicki for telling me that the breathing exercises work for her. Helped me to feel that I was doing right. So I’m hooked up to the IV, just waiting around for it to get done.

I’m in a new room today. It’s pretty, and bigger. The first room I had, the chair was against the window, so I could not look out of it. The window faced a little enclosed garden, and the office next door. Who wants to look at other people working?

This one is half again as big as the other, has two picture windows that face what I believe is a willow tree, (those trees that have the big long branches with all the leaves that hang down almost to the ground), and a slope that leads to a river. So basically, I’m looking at the four elements: earth, wind (blowing around the branches), water (river) and fire (in the form of the sunlight hitting the leaves and the grass and lighting up the far slope and the water). This is a good room. The windows have blinds on them and one is closed so I can sleep if I want, and the lights are out, so its all natural lighting and it is so quiet and peaceful. I’ll be in this room for the next two days. It makes me feel better to be in here. This room is calming me and helping my worries to drift…

Maybe it will inspire me to write…or sleep. We’ll find out…

 

That was awesome! I just talked to George and Francoise, my uncle and aunt from France. Well, one set of uncle and aunt anyway. I have a lot of family in France. I miss them all as I have not seen most of them in WAY TOO LONG. My own fault. I digress. So they called the clinic and I talked to them for about 10 minutes. It was really wonderful. I can apparently get calls while at the clinic. I have a prepaid cell, but well, it’s prepaid. Not a lot of minutes. Had I known I could get calls at the clinic, I would have told you all about it before.

For those of you who don’t know George and Francoise, that would be all my friends, they live in St Pierre/Quiberon, in a converted post office. They bought the place a long time ago and changed all the rooms to look like bedrooms, kitchen, living room, dining room and everything else. They have a very nice place. When I used to visit them, we would dress for the beach in their house, wrap towels around our waists and walk the 2-3 blocks to the beach. George taught us (me and my sis) to water ski one summer. That was awesome! I’ve also been on a catamaran in St. Pierre with my cousin Eric (not their kid) and did loads of other water activities with various other cousins. France is a cool place, even better when you get to spend time with family on the water.

Another good memory. George and Francoise have a boat, which they took us sailing on. One Bastille Day, July 14, (French Independence day) we went out onto the water to watch the fireworks from not one town, but many towns. Fireworks over the ocean are so beautiful: the darkness of the water did little to diminish the vibrant colors of the fire blossoms. The calm air on the Atlantic rocked the boat a little, as it will, and the sea added to the gentle rocking. There was probably wine and cheese and other food, but I can’t really remember. It’s been a long time. But oh, such lovely memories.

Merci beaucoup pour le coup de telephone, George et Francoise!

 

Well this has been a weird day. As I stated earlier, I woke up really early. I had a bad night’s sleep and I woke thinking about none too fun stuff. Doesn’t matter what it was, all that’s important is that I did not wake up with pleasant thoughts. Those thoughts stayed with me the whole day, due to my lack of sleep. Well, when Cathy unhooked me at 1:37 pm she stated she was not comfortable letting me leave the clinic yet, as I felt warm, but had no fever and I was having some issues with my breathing. The doctor listened to my lungs and it was not an asthma attack or anything like that, my lungs sounded good, I just didn’t drink enough water today.

So at 2pm, Cathy had me lay down on the bed that’s in here, and I tried to sleep. I tried breathing techniques to make sure that my mind did not wander to the unpleasant thoughts, but alas, it strayed. Well then something really weird happened. I could swear I was not sleeping, but I had a nightmare.

I was in the room I’m using today, talking with the lady I met yesterday, Pam, and she was hooked up to an IV. When I talked to her yesterday, she was still hooked up; I wasn’t. So dream was mirroring reality. Then someone came into the room to take Pam away, and I was suddenly hooked to the IV, but not through my arm. It was through my stomach: a wide piece of plastic that looked to be five or so hard plastic tubes were going into my gut. I looked down at myself and said, “Wait a minute. I’m not the one hooked up!” I then proceeded to rip the tubing out of my gut. There was no pain, as this was a dream, but then this man appeared who looked like Riff Raff from Rocky Horror Picture Show, but scarier and more zombie like. He opened his mouth while reaching for my gut wound and blood and gore and worms came out of his mouth.

That’s when I woke up with a clear mind. Nightmare broke my bad mood. Which was cool, but odd. Still don’t know how I feel about a nightmare making me feel better.

 

Bo came by today. It’s always nice spending time with Bo. If you don’t know him, you should. He came by after I left the clinic, we had dinner (stuff I’d made for the week) and ice cream! I had to stop at the pharmacy to pick up my sleep aide prescription (hope it works). When Bo called me to let me know he was on his way, he asked if I wanted anything and then stated he could bring me ice cream, to which I reminded him it was a 2 hour drive from Rockford to Northbrook. He decided not to bring ice cream, which is why I had to buy some. And he brought me truffles from Chocolat. Hee hee hee. Two days in a row my lovely friends come to visit and bring me wonderful treats from Chocolat by Daniel.

For those of you who don’t know about Daniel, he was trained in Paris, amongst other places in the world as a chocolatier (spelling is off, but I think you get my drift). The man knows what he is doing when it comes to chocolate. It is the most wonderful stuff I have tasted in quiet some time, and he is in Rockford. Jackpot.

So we sat and talked and it was a really nice way to spend the evening, as Bo is very adept at listening to people (he is a Pastor; it’s kind of his calling). Bo left just as Jason called and I got to talk to the hubby for about half an hour, always a nice thing. And now here I am, waiting for 9pm to roll around so that I can take my sleep aide and actually F***ing sleep. I hope.

My other hope is that tomorrow brings better spirits. It’s my last day hooked up to meds, for which I am very grateful. I keep seeing the bruises on my arms from the puncture holes that missed and worked and all I can think of is ugly. It looks terrible. Even the tape and bandages left red marks. I’m glad you can’t see me Maman, I think you would be very worried and very upset by the way my arms look. I don’t hurt; it just looks awful. But hey, after tomorrow, I don’t have to get any more medicine for a whole year, and really, that’s the best part of all this. I can concentrate on other things, like exercising, which I definitely need to do to help myself stay as healthy as possible, and hey who knows what else might happen if I don’t feel as sick anymore? I might actually socialize again.

Leave a comment

Filed under Non Fiction

Day 3 June 3, 2009

Kind of neat that the number of days I’ve been on this medicine coincides with the days of the month.

I was wrong on my shot count yesterday. I had a shot of insulin, two pricks from the diabetic tester and three pokes from the needle. Six shots yesterday. Let’s hope today proves better.

Woke up at four in the morning. 6 hours of sleep last night. Yay for me!

Started thinking about Neil Gaiman and the fact that the man will be in Chicago on Saturday for the free Lit Fest. I don’t have tickets, and could print them off my computer, if I had a printer. The Gaiman talks are “sold out”; weird thinking that a free talk is “sold out”, but whatever.  Thinking about going, as I am basically in Chicago, but would prefer to go with someone as I don’t really like going someplace new alone. So there’s the invite. The only rub is that if someone did come with me, I would ask you to print up tickets for us. Then we would go to where he is speaking and pretty much pray that we can get into the talks without pre-tickets. Any one want to hang out at a lit fest and try and see the coolest writer ever?

Decided to get up near 5 am because I turned my thoughts to writing. Instead of writing, I decided to go on the net and found more responses to my emails, both on my yahoo account and on myspace. I want to thank all of you for writing to me and for all your well wishes. It makes me feel loved.

I wanted to take the opportunity to let you guys know that despite all the needles I have had to endure, this has been a rather nice experience. The nurses are pampering me on a daily basis. Since I’m hooked up to an IV, they bring me my food, get me water, make sure I’m all settled and comfortable. After Cathy helps me to the bathroom, I’m in the room by myself, she just pushes the IV poll around, she takes me back to the room, lets me sit, positions the IV, gets my blanket, lays it on my legs, give me the pillow to rest my IV arm on, then puts the tray on the comfy recliner. Then she puts my laptop on the desk, along with my book, my water bottle and my (big surprise I’m sure) chocolate. Had to get some when I arrived, as I did not realize that I would need some. To all of you how are laughing at me because you know I should have known better, I was waiting to get here to get myself some sherbet. I can eat sherbet but not ice cream, due to the salt content in ice cream. I didn’t find any good sherbet. I went shopping at the Jewel/Osco, and they had a bunch of ice cream and some sherbet, but nothing really fantastic. When it comes to the sweet stuff, I prefer quality to quantity. Actually, when it comes to food, I prefer quality. Which is why Brio, Octane and Irish Rose are my favorite restaurants in Rockford.

So anyway, sherbet. Jewel/Osco did not HAVE good ice cream. No Haagen Das, no Ben and Jerry’s, no Dove. I was so disappointed. So I passed on the sherbet and went to the candy aisle and bought myself 2 tablets of Hershey’s 60% Dark Chocolate reserves. I like 70 or 80% better, but that was the strongest I could get.

I am now officially, a chocolate snob, or perhaps a chocolate connoisseur. Yeah, that sounds better. While eating this good tasting tablet, I kept thinking about what Daniel says and about what the author of the Chocolate book Stephanie gave me states. Both say the same thing. Chocolate is the only substance on planet earth that melts at human body temperature, when made correctly. If you place a piece of chocolate on your tongue and it does not immediately start to melt, allowing the flavors to spread to your tastebuds it has too many fillers. The Hershey’s Reserve did not melt, does not melt in my mouth until it is practically gone. Disappointment. I suppose its safe to say that I did expect that, but still. If it’s supposed to be better then the regular stuff, it should melt in your mouth.

Still good with the strawberries, though.

 

Watching The West Wing on TV after breakfast before leaving for the clinic. I love that show: really intelligent conversation, well-written and good actors and actresses. Also, Martin Sheen who plays President Jed Bartlet, has MS. The episode and season that is on is the season where the Pres goes to China and has major MS issues while traveling. On the airplane, he orders food, then doesn’t eat. His Chief of Staff sends people out of the room and asks if anything is wrong; he says there’s nothing wrong. He asks for the Surgeon General, and tells her that he can’t move his hands to eat. Can’t feel anything in his hands either. Later in the episode, he can’t move at all.

I can’t remember when I started watching The West Wing, I believe it was before I found out that I had MS, but I didn’t start really watching all the episodes until after I found out. (Thank you Bravo reruns.)

The show scared me a little with MS. Of course the character is male, older and has a high stress job, but still. The show gave me a glimpse of what might come. My hope and yes, prayer, it that the Campath treatments will help to keep me healthy and avoid what I witnessed on The West Wing. Only time will tell.

If any of you are curious about another person’s experience with Campath, I found a diary of an English man online. It was really interesting, inspiring and informative. Here is the link: http://www.davidscampathstory.org/

 

Yesterday, Andy stuck me three times before she found a good vein. The one she finally got was the one that hurt worse then anything else. Here’s the thing. Once the initial pain faded, the IV was comfortable and I didn’t have to worry about how I positioned my arm. Knowing how comfortable it was and knowing full well that it would probably hurt like crazy going in, I nevertheless asked Andy to stick the IV in the same place on the other arm today. I’ll take a little pain if I can be comfortable typing.

Guess what? Didn’t hurt that much. Knowing that it was going to hurt helped me to relax my arm, breathe deep yoga style: in through the nose, out through the mouth, and I stayed calm. It hurt a little, not that much. And so I’m sitting here, feeling relatively ok with my IV. Awesome.

An hour and a half later and I’m singing a different tune, various swear words running through my head. As I am trying to bring the amount of curse words in my vocabulary down, I won’t use them in this letter. I get an IV infusion of steroids in the first hour-ish, then the nurses flush the IV then as long as everything is going ok, Cathy hooks me up to the Campath. Until today, the transition has gone without a hitch.

Today, (perhaps because it went so smoothly? Who knows.) when Cathy flushed my IV, the fluid went in no problem, there was no swelling in the skin, but when she pulled the syringe tip out, no blood flowed out. Let me repeat that: Cathy used a syringe to try and pull blood out of my vein and nothing happened. She called Andy in, who proceeded to remove all the tape and twist the syringe (that felt WEIRD) to try and figure out what happened. As the vein did not look like it was going to cooperate, they had to take the syringe out. Which means they had to place a new one in. Andy tried the vein by my wrist near my thumb. Hurt like hell and swelled immediately. Which meant she had to take it out and tried again in my vein in the crook of my elbow.

Though the vein there is fantastic and cooperative, Andy was hesitating to use it as that vein had an IV in it for my MRI last Wednesday. Usually with an MRI, you get scanned, they pull you out and they inject you with a contrast chemical that makes everything in your brain light up. As the techs needed me to keep as still as possible, they needed to put the IV in to minimize movement, so they wouldn’t have to pull me out. So had an IV in there on Wednesday, then on Monday, for my first day of treatment. Andy wanted to give the vein one more day of rest. No such luck. She had to stick me in the crook of my elbow, as there were no other options.

At this point, it’s looking like Andy may have to use one of the veins in my hands either Thursday or Friday. I am not looking forward to that. Twice I’ve had to endure being stuck in the hand. Once in 2003 after my car accident: I was on a very powerful painkiller. My first day after the accident, I was on Demerol. Second day: Morphine. Third day and for the rest of the time: Vicodin. The painkillers were so effective; I hardly remember the first three days in the hospital. What I do remember is two nurses coming into my room and trying to stick me in my hand. I came out of my drugged induced stupor and cried out from the pain. I repeat (I feel like I’m mimicking Lewis Black): on heavy painkillers strong enough to remove the pain of my broken foot and broken pelvic bone, I could feel the sharpness of the needle going into my hand.

The second time was when I had sinus surgery to remove the cyst in my sinus cavity. I was on a mild sedative and the anesthesiologist was trying to distract me by talking to me as he stuck me in the hand. Didn’t work. I yelled and jerked away and he had to stick me again. Since then, I have never once failed to tell someone taking my blood or trying in anyway to stick me with a needle that I need to be told when they are about to stick the needle into my skin. If I know it’s coming, I can prepare myself. If I don’t know its coming, well, I pull away, forcing the person to have to stick me again.

I hate getting stuck in the hands. I have awesome showy veins there, though, which means (sigh) I’ll probably get stuck there in the next two days.

 

Mmmm…strawberries. Hee hee hee…strawberries with chocolate.

 

Today after Cathy unhooked me, I had the opportunity to talk to Pam, another test subject. This is actually her second treatment. She had her first a year ago. I wanted to say hi and talk to her a little bit about her MS and her experience with Campath. I asked one question and she gave me a lengthy statement that answered all the other questions I was going to ask. I liked that a lot. She was really nice and very talkative and not bothered that I wanted to know more about her. Once she was finished telling me about her experiences, all positive by the way, her MS is not bothering her as much any more, I turned the talk to books. She’s into vampires and Buffy. We were able to talk a lot about stuff that had nothing to do with our illness. I really appreciated that. I learn a lot more about people when they are being positive. The whole experience made me happy. She’s a very nice person.

I talked to her for a good hour, then left the clinic and am now waiting for Jason and friends to show up to go to dinner. So this is where I am leaving off, for today. Hope you guys aren’t bored with my story yet.

Leave a comment

Filed under Non Fiction

Day 2 June 2, 2009

I woke this morning at 11:30 or midnight, can’t remember. Here I thought I was going to get a solid night of sleep. NOPE! And the really annoying thing was, I was hungry. Really hungry. That hunger you just can’t ignore, because if you do, you’ll feel awful when you really wake up. Fantastic. So I got up and had a banana and some strawberries. When I was at the Grocery store, I saw them and thought strawberries would be so lovely to have. And they were. So had some fruit and needing to digest, I started writing the first letter. Couple hours later, I realized I was hungry again and, I was fully awake. I decided to have my leftover steak and veggies and finished my letter.

Breakfast again in the motel. I had fresh waffles with syrup, a small milk and hot chocolate. Lovely, wonderful, awful, bad idea. When Cathy checked my blood sugar, I was at 248, which is apparently not good. Yesterday, I was more around 120 or something like that. They had to give me a shot of insulin as the steroids can cause a blood sugar spike. That was shot number one.

Monday, I was poked with the diabetic meter twice and they stuck me for the IV twice, as I was thinking of having them leave the needle in overnight to avoid being stuck too many times this week. The IV needle is not metal; it is plastic and therefore flexible. The needle is a plastic tube that has an actual needle in its center that can be drawn out after making the initial hole. I compared this to getting a piercing and Andy agreed it was. So Andy stuck me in the lower arm, but the vein was too crooked, so they had to get me in the crook of the elbow where my veins are generally cooperative. So first day – four pokes. Second day. Two diabetic sticks. Andy wanted to place the IV in my right arm and went to a usually cooperative vein. It hurt a little, then it was rather uncomfortable as she tried to insert the plastic further into the vein. It wouldn’t go in.

There are valves in your veins to keep the blood from going the wrong way due to gravity. The veins can also prevent the needle from going in. Andy had to take the needle out to try again on a different vein. She tried the vein on my wrist that aligns with my thumb. Ouch. I felt it a little bit too much when it went in, then there was this weird shooting pain that made my thumb tingle. Apparently there’s a nerve near where she was trying to stick me. She hit it on accident. That was when the vein decided to collapse. Out came the needle. Andy then had to try the vein in my lower arm, halfway between my wrist and my elbow. I said ouch very loudly. Then continued to say ouch as she pushed the needle into place. Damn, that was not pleasant. It doesn’t hurt any more, but that was really not fun. Second day – five pokes all ouchy.

Side note: Before I came out here, Cathy and Dr. Wynn told me I could bring anything I wanted to since I was going to have a lot of times on my hands. I brought my laptop, three books, and because I didn’t want to be lonely, I brought Martin. Martin is my oldest stuffed animal, and my favorite. He is a brown bear that looks his age. My aunt Genevieve gave me the bear when I was six months old. His fur is worn, he’s lost his nose, one arm was torn off and sewn back on incorrectly, so he looks like he’s asking for a hug. A bear hug. (hee hee) Which is about the cutest thing I could possibly think of.

The day went pretty quick and except for the mishaps with getting the needle into my vein, nothing else noteworthy happened. So I guess that’s all for Tuesday. A few of you have asked me how long I’ll be here. I will be down her until Saturday morning, checking out by noon. Will be back in Rockford that night and have Sunday off to recoup and do laundry. So in case you want to see me, I will be at my favorite place on Saturday night.

Leave a comment

Filed under Non Fiction

Day One June 1, 2009

My first day actually started on may 31, 2009, as I work from 5pm to 1:30 am. Since I had to be in Northbrook by 8:30 and DID NOT want to deal with the hassles of big city traffic, I decided to go grocery shopping after work, (grocery store right next door to work. Convenient.) then go home and pack and rest then leave at 4:00 am. I was able to do everything but rest. Didn’t realize how long it would take to pack.

So I left home at 4 am and headed toward Northbrook, hoping to stop at the oasis and grab a cup of Starbucks Café Mocha. Mmmm, yummy. I figured since the oasis was open all night, they would be too. Low blow of low blows. They were not. I had to settle for McDonald’s Mocha, which although less expensive, tastes inferior. Once I had my coffee, I left, giving the Starbucks stand a forlorn look as I passed it.

It was raining the whole drive down to Northbrook, but I don’t mind driving in the rain. Keeps me alert. I arrive at the hotel at 6 am, and as they were not busy, I was able to check in. I unpacked, then made lunch for the rest of the week. Due to the steroids they give me, I have to have a low sodium diet. Really easy to do if I cook for myself. I usually forget to add salt when I cook from scratch. (not when I bake though.) I made myself a large pot of pasta, cooled it down then added red and yellow peppers and tomatoes, seasoned it all up with Mrs. Dash Italian herbs, oil and balsamic vinegar. Tasty. When that was done, I went to the free American Breakfast they serve at the motel. By the time I was done with breakfast, I had just enough time to get ready and leave for Dr. Wynn’s office.

By now, I had been up since 2 pm the day before. I was tired and all I wanted to do was sleep. The nurses nicely pushed me around: telling me where to go in the nicest of voices. I like the staff here; good people dedicated to their jobs, with kind voices and quick smiles.

Cathy is the head nurse; she’s in charge of the research patients. Every day when I arrive, she’s going to do the same things: take my blood pressure and pulse, make sure I’m not pregnant, give me pills, (for headache, possible fever, antihistamines), and check my blood sugar. Then she gets Andy, another nurse, who feels the veins in my arms and decides where to poke me. She’s really good; I hardly felt a thing. They hook me up to the steroid drip and leave me alone until it is done. Takes about 1 ½ hours.

Cathy made sure I was comfortable, and let me fall asleep. I was so tired by then, I needed a nap desperately. I’m writing this on Tuesday, and I know it has only been 24 hours, but I have no idea if I slept at that point.

When the steroids were done, Cathy checked all my vitals, including blood sugar. (steroids can raise sugar, so they have to keep on eye on it). Once I was all hooked up, Cathy turned down the lights and I fell asleep. I woke up halfway through the IV process needing very badly to pee. I have to drink a lot of water while taking the drugs. It is not fun having to first ask a nurse for help in getting to the bathroom and the trying to maneuver around a bathroom still hooked up to an IV. Suffice it to say, I wouldn’t recommend it.

The rest of the day went pretty much the same way. Just stayed hooked up all day and rested, played Bloody Fun Day on Kongragate.com to zone out. (neat game. You’re the Grim Reaper and you have to kill cute animals) I was done with the meds and out the door by 4 pm. All I wanted to do was sleep, but I didn’t have dinner food. I went to the nearby grocery store and bought steak and chicken for the week, then went to the motel and waited until I was hungry enough to eat. I marinated the steak when I arrived at the motel room in Olive oil and Mrs. Dash Italian herb. Threw the steak into a small pan, turned up the heat and let it fry. Turned it once, covered and then let it cook while I finished chopping up red and yellow peppers. When the steak was done, (all nice and pink on the inside, I’m so proud of myself. I can’t cook steak usually) I threw the peppers into the pan and let those cook. I had a really nice dinner.

I did the dishes after dinner, or rather, I put everything in the dishwasher and let it go while I was trying not to fall asleep. I ended up napping on the couch for half an hour. After the dishes were done, I gave up and went to bed. It was eight in the evening. I haven’t been to bed that early in a LONG time.

So that’s the end of day 1. Stay posted for more. Or not. Up to you.

Leave a comment

Filed under Non Fiction

I have willingly become a lab rat

This is part one of six letters I wrote to my family in 2009 when I decided to become a clinical participant for an MS drug that is now being considered by the FDA for sale in the USA and Europe.

I am in no way telling you to get on the drug. This is a conversation between you and your neurologist. This is just my account of the first set of treatments. Go in good health.

 

As most of you know, I was diagnosed on October 30, 2006 with Multiple Sclerosis. The first symptom I had was dizziness for three month straight, starting on August 4, 2006. I was in a wedding that day, and was afraid of falling over due to dizziness and wearing high heels. I did not fall, thank goodness, and thought the dizziness was due to either lack of sleep or water in the ear from having been swimming the day before.

I thought the dizziness would pass, instead it became worse, to the point that when I was walking around at work, I was placing my hand on the wall to make sure I did not fall over. I felt like a drunken sailor on a turbulent sea. I saw my doctor, on more then one occasion, and she said it was just mucus in my sinuses. After hearing this twice and being prescribed medicines that were clearly not taking care of the problem, I saw an ear, nose and throat doctor. He put me through so many tests. By this time, it was September, and I was so dizzy, Jason had to drive me to work.

I was dizzy from the moment I got up to the moment I went to sleep. Not that sleeping took away the dizziness. I could only sleep in certain positions. It was maddening and a little scary. I didn’t know what was going on.

After running me through a lot of tests to see if it was an inner ear infection, or anything having to do with an ear problem, the doctor ordered an MRI. When the results came back, he sent me to a neurologist. The problem had nothing to do with my ear and there was something on the MRI he couldn’t identify.

I saw that doctor once, as he was not on my insurance list, and therefore, too expensive for me. Jason came with me and remembers the doctor stating that is was most probably MS, but I don’t remember that, I think because I did not want to remember. The doctor said we needed to do further testing, which is when I found a neurologist my insurance did cover.

The second neurologist looked at my MRIs and stated it was inconclusive. The white spot on my brain could either be a tumor, an infection, or an MS legion. She left the room to talk to a neurosurgeon and they immediately ruled out tumor. A tumor that size would have affected me to a greater degree then just being off balance and dizzy.

I had to get a spinal tap to find out if it was MS or an infection. That was not a pleasant test. When I described the way I felt to my mother-in-law, she said it sounded like an epidural. Not all women have unpleasant experiences from epidurals, but if you’ve had an unpleasant experience, you know how I felt.

The epidural revealed I had MS. That day ranks high in top bad days. It was not a relief to find out what was going on. I like to say it was, as I prefer knowledge to ignorance concerning my body, but really, the diagnosis terrified me. There are worse brain maladies out there, but still. Finding out I had a degenerative disease ripped through me like a wrecker ball through an old brick building. I had no words, I could think of nothing to say or ask. Jason was with me and was able to ask the important questions, but I was silent with devastation.

The doctor gave me some information on medication and asked me to look over the information for three months before I decided on a treatment. She wanted to make sure I was aware of all the side affects and how well everything worked. She was pushing for Rebif, but I decided on Avonex, mostly because it was a once a week shot as opposed to a three times a week shot.

I started on Avonex in January of 2007. I hated it. The needle was an inch and a quarter long and I needed to stick it into my thigh. I had the option of sticking myself in the arms as well, but I kept looking at my arm, then at the needle and I had to wonder how in the world I was supposed to insert an inch and a quarter long needle into my tiny arm. I am not as small as my mother or my sister; I do have some fat on me, but not that much. If I grab my arm fat, and flatten it out a bit, there is still not enough room for an inch and a quarter needle. So I was stuck with only two spots to stick myself: my left or right thigh.

I found out about halfway through the year, that I could get an inch long needle and switched to that. The problem was, sometimes, the inch long needle seemed too large. Once again, I am not humongous; just a touch overweight, and the inch long needle into my thigh sometimes didn’t fit. Often times, a quarter inch of the needle would stick out as I injected the fluid into my thigh.

This went on for a year. Then in February or March of 2008, I realized that I was getting a new symptom. My left cheek, gums and tongue would tingle, as if falling asleep. It was really disconcerting. I had another MRI and found out the Avonex was not working: I had a new legion. I cried. Hard. I didn’t want to be getting worse, but what can you do, really when your body decides to attack itself? My doctor and I spoke and she prescribed me Rebif.

I started using Rebif in April of 2008. Though I loathed giving myself the shot, the needle was much easier to take. Half and inch long and MUCH thinner then the Avonex needle. Of course, it doesn’t matter how big a needle is; if you don’t like needles, you don’t like needles.

Rebif came with an auto injector, a device that the syringe hides in. You push a button, and it makes a loud sound as If swiftly injects the liquid medication into your leg. I used for a little bit, until I scared myself out of using it. There are 8 spots on the body I can give myself the Rebif shot. My triceps, my thighs, my stomach and my back. I was trying to shoot myself in the arm, but the noise of the auto injector scared me and I jerked my arm away. Fantastic. I tried right away with another needle to give myself my shot in the stomach, about a half an hour later. It was too soon. I jerked away. Much later, about three hours later, I tried again in my leg. Couldn’t do it. I gave up using the auto injector and though it took slightly more time, I injected the needle manually. As I could not reach my back, Jason used the auto injector for my back.

Despite the needle being smaller and easier and quicker to inject, and despite the fact that I had almost no side affects, I hated what I was doing. And I didn’t feel that it was helping me. While on Rebif, I was still developing new symptoms. Nothing debilitating, just odd complications that the MS Society website and a lot of other sources stated were to be expected.

During this time, my second neurologist left the practice due to Visa issues. I have since learned that she had to return to Canada. When I found that out, my first thought was, the United States has Visa issues with Canada? But whatever. She left and I had to change my neurologist to a man that was very nice, but was leaving the practice once his contract ran out, as he was from the Mediterranean and hated winters in Illinois. I don’t blame him. I hate winters in Illinois too.

I saw the new doctor a couple times. I told him about my new symptoms. My left leg was feeling rather odd. It was still winter, I believe November of 2008. While walking into my apartment from outside, I thought there was a hole in my shoe as the bottom of my foot felt cold and wet. As soon as I was able, I checked my shoe and no, there was no hole. I figured it was just my MS and didn’t worry about it too much. Then I noticed that the feeling was not going away. While sitting on my couch one day, I started to rub the spot that was cold on my foot. BIG mistake. My foot went from feeling cold to feeling as if it were on fire. You know that feeling you get when you accidentally touch something hot on the stove? Imagine that on your foot, but you can’t pull away from the heat, because there is not heat source: it’s just your nerve ending going haywire.

Over the next few days, the feeling jumped to my thigh. My calf was not affected, just my thigh and foot. Then to add to this dysfunction, my thigh became over sensitive. If anything pressed against me, including my lovely, tiny cat (Hazel is less then 7 lbs), with even the slightest pressure, it would feel as if something very heavy was being pressed against the whole side of my thigh. I was experiencing some other symptoms as well, but those are private, so I’ll leave those alone.

I told the new neurologist what was going on and about my leg he said he would prescribe me some nerve pain medication. The other issue he stated was not related to my MS and I needed to see my other doctor about it.

I started taking the pills to help my leg. It did help, so that was nice. It helped the other symptom as well, so I did not see my other doctor.

During this time, the MS Society sent me an email with a link to a survey, about being a potential candidate for a test drug. The test drug is call alemtuzumab. It is also called Campath, which is what I refer to it as, since Campath is an easier name to remember and spell. A few of you wonderful people sent me information about this drug when you heard about it. Thank you. All that info was quite informative and was a big factor in me doing the survey.

For those of you who do not know what Campath is and do not want to go online to find out about it, here’s a sum up and MS and how Campath can help:

In MS, the immune system t-cells attacks the myelin sheath, the covering around the brain cells that helps transmit messages to the rest of your body. Campath is a leukemia drug that attacks the t-cells and stops the immune system from attacking the myelin sheath. In previous tests, Campath has been shown to be as effective in slowing the progression, as Rebif, BUT Campath has been shown to STOP or even REVERSE the symptoms. A doctor that was part of the initial discovery of Campath wrote a book called Curing MS. Did he cure it? Sure, for SOME people.

The testing for the Campath is in its third phase. First phase: medicine tested on animals. Second phase: Campath is tested against a placebo. Third phase: medicine is tested against proven drug. In this study the drug manufacturer wanted to test Campath against Rebif, the drug I had been on for nearly a year. Test subjects are either placed on Rebif, or on Campath. There is no placebo. No placebo. That is a wonderful thing. I don’t like taking fake meds. I want to know that I am actually taking a medicine, as my mind is at ease when I’m on an actual medication.

There are side effects, of course, but all three are monitored with monthly blood tests. The three major side effects are a bleeding disorder that can be treated with medications; thyroid problems, also treatable with medications and infections (colds and the like) that can be treated with over the counter medication.

Rebif can destroy my liver.

After completing the survey, I was given information about a doctor in Northbrook, IL, 2 hours from Rockford (it’s a Chicago suburb) and told that his office would contact me in a couple days. This was in March. His nurse Cathy called me the next day to set up a meet and greet. The survey was a pre-approval, it did not mean I was all signed up. The doctor, Dr. Daniel Wynn, wanted to meet me and make sure I was a good candidate and knew what I was getting into. Which is a very good thing.

I drove down to his office on March 20, 2009. I liked him almost immediately. He and his staff are dedicated to their patients. They have over 3000 MS patients from all over the area. He put me at ease and answered all my questions. Out of curiosity, I asked him about the private problem I was having and he immediately stated that it was definitely an MS problem, and then explained that outside of the US, such problems are talked about and not pushed off to other doctors. It was a relief now I was right about this aspect of my illness, and aggravating that the other neurologist was so quick to dismiss it.

Another odd think about the doctor in Rockford is that when I asked if the nerve problems meant a possible new legion, he stated that it was not, that weakness in the body meant new symptoms. As I am still new to all this, I decided he knew what he was talking about and chalked my worries up to paranoia.

When I saw Dr. Wynn for the first time, I asked him what constitutes a new symptom. He stated that numbness can be seen as a new symptom: it was not the numbness or weakness, it was whether or not the problem was in a new area or in an old area. Symptoms occurring in old problem areas do not necessarily mean the MS is getting worse. New symptoms occurring in new areas can mean the MS is getting worse.

Though Dr. Wynn made me feel very comfortable with all the answers he gave me, I was not ready to say that I wanted to be a part of the study. He also did not want me jumping to any decisions, so we sent up a screening visit for April to see if I qualified and to give me time to think.

I took the time to think about it and realized that if I had been signed up with the initial online survey, I would have had no hesitation. When I realized this I was ready to sign the paperwork at the screening visit. I was officially part of the test on April 17th, 2009. I would not find out what drug I was on until a few days before I was administered the drug. This is protocol. The nurse, Cathy, would feed my number (because I did become a number when I was accepted) into the big computer as she puts it, and it would tell us what I was on. There was a one in three chance I would be placed on the rebif; two in three that I would be placed on the Campath.

Side note: another reason I feel very happy with my decision to be looked after by Dr. Wynn is that my neurologist in Rockford left, and I had to meet a new one. Nice guy, but when I asked him when I could stop taking the nerve pain medication (I had been taking gabapentin since November; I didn’t want to take it for the rest of my life) he told me to stop taking the medication then start again if I felt the pain. This was not a sufficient answer for me. It felt as if he was saying that I would be taking it the rest of my life. Not fun.

When I asked Dr. Wynn the same question, he stated: Nerve pain medication does not take away all the pain. If the pain went away, that means the symptom went away and I could probably stop the medication.

Which doctor would you prefer to have taking care of you?

 

Before Cathy told me what drug I would be placed on, I had to go through an MRI, and had to get blood drawn, and had to give a urine sample to ensure I was not pregnant. One of the stipulations of the study is that a woman cannot become pregnant during the study.

May 27th, I drove down to Northbrook to talk to Cathy, make sure I wasn’t pregnant and get my final MRI. She took me into a room and told me that she received the news on my drug. She asked me if I had a preference. I told her I did. I had been on Rebif for a year and did not feel it was working 100%. I hated taking shots 3 times a week. I wanted to be on the Campath, which is given in 2 infusions. The first infusion is a 5 day IV infusion. The second is a YEAR later and takes 3 days. Let’s see, five days of medicine though a needle, and then 3 a year later or a total of 3 shots times 52 weeks = 523 shots a year. And the study runs for 2 years, so that’s 8 days total hooked up to an IV as opposed to 1064 shots. Hmmm… That was a no brainer. I wanted to be on the Campath.

Cathy looked at me and said, “Well guess what? That’s what you got.”

She showed me the paperwork and it did in fact say alemtuzumab. I cried. Not for a long time, but I did tear up in thanks. I was so happy. It’s a relief, for many different reasons. The biggest is that the drug is showing a lot of promise, and even if it doesn’t work, I am still helping to research a new medicine. Also, no matter what medicine I was put on, all my doctor visits to Dr. Wynn, all blood tests, and all MRIs for the next 2 years are free.

So on June 1st, 2009, I drove down to Northbrook, IL, checked into a motel room (also being paid for by the study), settled in and went to Dr. Wynn’s office. I received an IV infusion of steroids for an hour, to help with the side affects of the Campath, then was hooked up to the Campath for 4 ½ hours. I slept, I read, I played games on the Internet, then came back to the hotel room. It is now Tuesday June 2nd, 6am and I am about to stop writing this letter to get ready for day 2.

Having MS is not the worst thing that could happen, but it seems to have happened at a good time. The drugs on the market have good ratings, and there are new meds coming out all the time. I am very hopeful of my Campath treatments and of the care I will receive with Dr. Wynn and his staff.

So I have willingly become a lab rat and since I have nothing better to do all day then read and write (how awesome is that!!!!!!) I’ll be sending out updates at the end of each day to let you all know how things went. Love and kisses to all you wonderful people!

Leave a comment

Filed under Non Fiction

I’m radioactive

Disclaimer: This is a rant. I’m venting. Take it as you will.

I’m radioactive.

Well, not really, but I feel as if I am. Why? I’m 38, a widow and I have MS.

I had a husband for 19 years that helped me in a lot of ways, and not just with the MS. I was diagnosed while we were together, and he was already sick, so that may be why he was able to take it all in stride. Or maybe he was just a great guy that would love me no matter what.

And he did.

So now, I’m a widow at 38. Why is that a problem? Well, like the song says, I’ve got too much life to live, too much love to give. I don’t doubt that I’ll end up in a relationship again, but tonight, I realized how difficult it would be for someone to love me. Or someone to decide I’m worth it.

I have a crush on this guy. It’s a guy that I met after my husband died, so it’s new and it’s hurting me a lot. I look at this guy and I think, “How the hell could he, or anyone else, decide I’m worth it?”

I know I have a lot to offer. I had one great man, I have a ton of friends. I’m not trying to be down on myself or be too conceited. I do like myself. I just recognize the fact that I have a lot of baggage.

Being 38 may not be an issue. It may be with the new crush, or any future crush, as he is younger. Much younger. We’ll leave that alone for the moment, as I don’t even know if that’s going anywhere other than a lesson for my heart.

I have MS. If you don’t know what that entails, look it up. On the MS Society page here: http://www.nationalmssociety.org/index.aspx Very informative.

So if/when I end up in a relationship, they’ll have that to deal with. If that wasn’t enough, there’s the fact that I’m a widow.

Any future relationship, friend or otherwise, will have to contend with the ghost of one of the most intriguing human beings I have ever met. I would never ask anyone to compete with a ghost, but it’s going to happen anyway. That’s just what happens. He was cool. I want people to know that. It would not be a comparison, not intentionally, but what if the future someone took it that way?

It’s just going to take a hell of a guy to decide I’m worth it. Someone like my late husband Jason. And I really don’t know if there is another one like him out there.

Leave a comment

Filed under Non Fiction