Tag Archives: MS research

Day 5 June 5, 2009

I’ve been so groggy; I didn’t even feel like writing until now. It’s 9:45am and I am hooked up to my last dose of Campath. Andy stuck me once and everything went fine.

I am exceedingly groggy due to the sleep meds from last night. Took it at 9pm. The nurses were adamant about making sure I did not take the meds until I was actually in bed, ready to sleep. So I got ready for bed, took the pill and got ready to sleep. Then my phone rings. Jason had a show last night, and was wondering if there was a speaker in the van, as he seemed to have lost one. Not sure if he found it, but I know it wasn’t in my van. Weird that a large speaker can disappear like that. Hopefully he found it.

After the phone call, I fell asleep, and didn’t wake until right before my alarm went off at 7am. Didn’t want to get up though. I felt like I could still sleep. Took a long time for me to get up. Went to breakfast, barely coherent, and noticed no yummy Indian food. L

I had scrambled eggs with Tabasco sauce (a little bit only) and potatoes. Nice and filling, but nothing spectacular. Still feeling half asleep, I wandered back to my room, slowly got ready and came here. I am still not sure I’m fully awake. Struggling a bit with mental facility. I will be napping.

I napped the whole time I was at the clinic. Andy stuck me once, they hooked me up to the IV, turned off the lights and I was out. The time went quick, due to sleeping, and before I knew it, I was done. Done, with my first year of meds.

It was anti-climactic.

Cathy came in around four and we talked about expectations and schedules. We will be talking every 2 weeks, and every four weeks I will be getting blood drawn. Luckily, there is a group that can come to Rockford and draw my blood from my home. Every three months, I’ll actually have to drive down to Northbrook for blood tests, but that’s not that bad.

Cathy gave me a list of my visits for the next five years. All listed out to the year 2013. When looking at the dates all written out, it makes me feel pretty good, because it shows that the drug company and the doctors and nurses in charge of this study want only to take care of the patients who have volunteered to test out this drug. I am very glad this is happening.

I’m in my motel room now, thinking on the past few days, wondering what the next few years are going to bring for me. I hope greatly that this treatment works for me as well as it has other MS patients.

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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.

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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.

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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.

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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.

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