Sunday, December 30, 2007
Geese, When I get home in the morning after working a 12 hour night shift, I cannot get my *ss out of the car. I seem to be good as long as I keep moving but the ride home takes about 45 minutes and I swear I need a crane to pull me out. I just don't have the strength. Some days are better than others, but I have to say this morning was a rough one. I can't pin it down, MS or 2 hours into my weekly Avonex dose. I must sleep through fever and chills because I wake up soaked. It's still worth it in my head as it really only seems to be one day of misery. I'm always at my worst on Sunday morning and that is shot day. One of our care partners is in nursing school and today she'll start her first day as a nurse intern, which gives them more responsibility and nursing duties. A nurse intern is in their last semester of nursing school, so I talked her through her first ever IM this morning. On me! It was cute. Every time I said, "Ok, go!" She'd try and squeal and not do it. Ended up being a 15 minute project by the time she finally hit me with it. I had to giggle. A bit torturous for me as I'd rather get it over with, but I love to teach, especially what I know, so I thought it was a good opportunity for her. She did a fine job. Better to give your first IM on my fat *ss arm than some really skin and bones elderly person that no longer has muscle and when you give it you hit the bone. Oh what an awful experience that is. That was my first IM. Our teacher hauled us off to a nursing home to give weekly vitamin shots and those poor old folks. Now giving an IM to someone who no longer has muscle so to speak is an art. This is why I'm in pediatric critical care.
Posted by Callie at 12:38 PM
Friday, December 28, 2007
Well we got rid of the blasted ugly tree today. It looks as though the house has been taken over by pine needles as we did it just before we had to leave in a snow storm to take the kids to OHare, Chicago (about a 90 mile drive). But Christmas is put away for another year. I still have a huge clean-up. That won't happen until next week as I must work tomorrow night and Monday night and then my normal Friday/Saturday. Also must take back less than year old Insignia digital TV to Best Buy for fixing as picture has gone to hell. I get stiffer towards the end of the week. Not sure if it's in my head, or I feel better after recovering from Avonex hangover and go crazy with chores, walking a damn mall for 5 hours with adult children the day after Christmas as they have money burning holes in their pockets or what. I really considered a try at downhill skiing on Christmas Eve, but instead took pictures of others and fetched coffee. Since we have new snow, I do want to go sledding this week. I was impressed with my husband as we haven't skied in 7 years and he did very well. I'm never good. Stay only on bunny hill and stop via "*ss". Down to one child in house now until the 16th when she returns to University. Kids made us a beautiful picture collage of the five of together on the 26th when we had a horse and carriage ride in downtown Milwaukee. They framed it beautifully. Now just to figure out where to hang it. Anyway, now I'm just rambling on. Hope all had a wonderful Holiday!
Posted by Callie at 6:36 PM
Tuesday, December 25, 2007
Now I know what you're all talkin' about. I shivered all day. Could , pardon what I'm about to share, "poop" though a screen and never hit a wire, and ache, spasm, ache. And yesterday, inspite of all my Ibuprofen and Alieve, the avonex hangover. Oh well, not enough torture to make me stop.
Posted by Callie at 5:16 AM
Wednesday, December 19, 2007
So here it is in all it's grand ugliness! Crooked! 13 miserable feet tall and bent as hell! I have no idea what Stephen and I were thinking. We wanted something smaller and manageable. I look at it and I do not know how we got it in the house. I sawed the thing down. No wonder the owner of the tree farm looked at us like we were crazy when he offered the 11 foot pre-cut tree and we declined saying, "No,no,no that's much too big and this thing barely fit in the baler! I've decided when it comes down, I shall saw it in pieces and pitch them out of the window!
Posted by Callie at 4:59 PM
Thursday, December 13, 2007
Good grief, I ache today and I still have much to do before Friday evening. Steve and I have to go cut down our Christmas tree, which means, I do the cutting with a hand saw and we load it up on a sled and drag it back to the barn and have shaken and tied and loaded in the truck and then we drive it home and drag up the stairs and piss and moan over whether it's straight and then I decorate. We also have major shopping to do and I don't mean Christmas shopping, just stuff we need before kids all arrive home. I have two of three bathrooms to clean yet and the 30 x 20 extension, which includes the litter pans and before I get started, medicate one of the horses. That means I have to wrestle a 1100 pound creature for eye drops and icky medicine she has squirted in her mouth and that's before they get fed, including feeding the goats that turns into a round up. Yesterday I cleaned the loft (my office and media room), stairwell and wall library, the formal sitting room with fireplace, spiral stairs down to first floor which is like the basement as this is a converted barn and in the "basement" is the apartment that needed a touch up, several loads of laundry and Steve and I put up 60 foot of Christmas lights, Oh and I topped up the the water troughs outside. I think I over did it a bit. My legs are so achy in spite of ibuprofen.
Posted by Callie at 5:04 AM
Wednesday, December 12, 2007
I don't know what insurance ya' all have out there, but I have United Health and for the most part it's pretty good, but I've noticed something. Whenever anyone in this house gets a CT scan or an MRI, I receive a little something in the mail from Ingenix. It's got a case number on it and a series of seven questions asking whether this was an accident and was a police report made and do I have an attorney. So I'm guessing it's their way of looking for some one else to pay. So today I take the option of calling them rather than fill out the form and mailing it. They automatically assume I've injured my back in which I respond, "No, this was part of diagnosing MS." She replies,"So how did you get this?" I said, "If you can figure out how anyone gets Multiple Sclerosis, then you would make a million, no one knows how you get MS." She says, "Oh, Uh, well we just say you hurt your back or neck. OK, Have a nice day and thank-you." WTF! Even if it's just investigation in the medical field, you should have some kind of knowledge of it before you are hired. But of course, the 800 number was referred to overseas workers for this company who barely speak English much less understand it! If I had balls they'd be frosted! Damn that pisses me off! Anyone else have the pleasure of this experience?
Posted by Callie at 6:32 AM
Tuesday, December 11, 2007
This weeks half dose was better. Completely premedicated with Ibuprofen and Alieve. No headache at all. Just that wave of nausea 2 hours after dose. Weird. We're in the middle of a Winter ice storm now. Yippee! And I have the same old outdoor chores to do. Satelite is in and out. Sucks! Sometimes I just want to watch TV.
Posted by Callie at 9:53 AM
Wednesday, December 5, 2007
Guess what I got to do this morning........Yes.....That's it! Shovel! We had a marvelous six inches of snow last night on top of the ice from Saturday on top of the three inches of snow on Sunday! Now I'm freezing after spending forty minutes outside, chasing horses, feeding them and feeding goats and screaming at Spot the Border Collie to back off as it's much fun to attack the snow and shovel as I attempt to shovel it. I don't like my husband to shovel besides of which he's sick from last night's crab cakes he ate at The Cheesecake Factory. Horses are pissy because I locked them out of the pasture this morning and managed to humiliate Misty with a red blanket. That's why they're running around. I say quit it and eat your breakfast! Now I'm frozen to my core. I've found a good combo for my Avonex hangover on Sunday to Monday. I take Alieve and Ibuprofen and I can keep the headache at bay. Still have it on Sunday after the shot, but It keeps it from showing up on Monday as well.
Posted by Callie at 7:15 AM
Thursday, November 29, 2007
I feel a cold coming on. I have sneezed non-stop for two days now and my nose is just running. My nose is so sore from constantly blowing. Don't know if it's allergies from the mega house clean I've just done or if it's a damn virus. There's absolutely nothing green about it, just clear water. Driving me nuts, though. I want to take my Airborne and my husband thinks that it will impede my Avonex. I don't think it will. Crap, I haven't had a cold in over a year! I guess this is my welcome to immune suppression! Yeah! Goody! I've just decided, I'm taking my Airborne.
Posted by Callie at 3:46 PM
Monday, November 26, 2007
Well, I upped my dose of Avonex on Sunday morning to a half dose of 15mcg. Only thing I noticed is as I did get out of work a little later than usual after my friend gave it to me is that I was a bit nauseated driving home. I did wake up early and did a few chores, fed the goats and horses in the afternoon, but I really struggled with weird random spasms most of the evening. Nothing jerky or horrible just deep upper leg and foot spasms. Just enough to make you notice and say, "ahh, yeah that hurt a bit" I'm lucky, I have a very high tolerance for pain. I pride myself in that I gave natural birth to Zoe without so much as a Tylenol. No drugs what so ever. The only time I really require pain meds is when I torque my lower back or get thrown off a horse. I never had a back issue until I was rear ended in Chicago at stop light by some *ss going 55 miles per hour on a city street. I was in the back seat. Since then, about 15 years, every now and then, if I lift just wrong, I'll torque it and hobble into the Doc twisted like a pretzel. Flexerol and Vicoden work very well! It's usually the spasms that get me. It was a year and half ago last time, when I got pitched off one of my horses, about 11 foot in the air before I landed, says my husband, That hurt, and required an ambulance ride, I just couldn't move. Six hours later and boats loads of Demerol, x-rays and a CT scan, I was able to hobble out of the ER in a doubled hospital gown and cowboy boots. Made for a rather humorous picture and story. That big giant horse got sold! I get along alot better with girl horses.
Posted by Callie at 7:07 AM
Wednesday, November 21, 2007
Being a nurse in a Pediatric Intensive Care Unit and being a nurse in the hospital setting for nearly 20 years hasn't allowed me many holidays off and this year I hit the jackpot. Not only to I have Thanksgiving off, but yesterday, my Supe called me at home and made a deal and I ended up with both X-mas eve and X-mas day off. Of course I'll have to work the three 12 hour nights before X-mas eve, but that's ok. I'll be shot on the eve's morning but I'll get up in the afternoon and become a human again. And this way I'll be fresh for X-mas day! Sometimes, it's the Holiday shuffle I hate most about being a nurse.
Posted by Callie at 3:59 AM
Tuesday, November 20, 2007
Nothin' like a new "do" (long awaited) , a little Christmas shopping, a very nice dinner at a very expensive fish market and I won't say what the topping of the night was, but you can guess. Just puts it all in perspective. Now it's back to the daily work grind and got my first paycheck with my decreased hours. Boy does that suck! Guess I'll have to try and pick up some overtime. That'll be hard on me. I love getting my X-mas shopping done and out of the way. I'm excited this year because we'll actually have some of our children with us and their significant others and we'll get back to buying toys for all. We are really big kids. And one of the funnest I discovered last night on our way to the mall, is that with the new road construction on our exit to the mall they've built a "round about". YES! Just like in England, with my British husband and all, the littlest things excite me. A real round about. Was tempted to go around a few times before getting off of it. They're fun, if you've never experienced it.
Posted by Callie at 5:29 AM
Monday, November 19, 2007
Oh wise and experienced MS sufferers. I'm coming to the realization that my short-term memory really sucks and I can't think of certain words I want to say. That's been going on for a couple of years. And this last shot, the third, I snuck up the dose ever so slightly and crap it knocked me out, but I felt better once I warmed up and started moving about the house. I think what I find most disturbing, is the memory and word fishing expeditions. The stiffness I can usually make it through. As I keep moving and ibuprofen does wonders.
Posted by Callie at 9:49 AM
Thursday, November 15, 2007
Not that I want to promote myself or anything, but this is not my only blog. My main blog is that of MidWestHorse, because horses are one of interests. And that was the first blog I started in January of 2007. If you need a chuckle, might I suggest an occasional read over there as I've mentioned, A British city boy husband, a small farm with 16 animals in the middle of Wisconsin, a state my husband had never heard of before, can make for some humorous moments including my latest post over there entitled "Playin' Possum". It might just make you smile.
Posted by Callie at 7:30 PM
Wednesday, November 14, 2007
I must have had a wild hare up my arse today. My husband and I are planning to get a pool table this year for Christmas as a family gift. The problem is where to put it as we have a finished apartment on the ground floor which equals a basement as we live in a converted barn, but the area down there that's is designated for a rec room is not finished. So instead, we've decided to put it in the extension which is our entry way. In order to do that I have to move some furniture. I decided to put the love seat on the third floor loft where my office area sits next to the media room, but I had a pile of crap in the corner for 13 years and I needed to finish painting the walls and beams in this room, so I did it. I am pooped, but boy what a difference. I am really stiff now. I'll probably really feel it tomorrow. Next week to finish clearing out the extension and making this pool table work. If I can still move.
Posted by Callie at 5:48 PM
Tuesday, November 13, 2007
Well, it wasn't so bad. Had a fellow nurse, Cindy give it to me just before I needed to give report and leave. Worked out fine. I can always count on Cindy, she has a bit of a mean streak. Was glad to do it for me, while others I had asked were too chicken to do it. I went home and slept , woke up with a bit of a headache, more sinus like in the evening, but all and all, not too bad. I'm hoping as I increase the dose, I'll still be able to tolerate it. I'm hoping so anyway. Had fun last night did a little pre-Christmas scouting for gifts and went out to dinner. Today, after my bath, since it's a nice day, think I'll go out and clean up my dusty horses. Maybe even do a little riding, while I have the weather on my side.
Posted by Callie at 5:59 AM
Tuesday, November 6, 2007
Yesterday, I was still wiped out from the shot and travel over the weekend and only managed to accomplish a load of laundry. Today was much better, I loaded and unloaded 10 bales of hay, two 50 pound bags of grain, some grocery shopping and I made dinner, although it was a weak dinner at that, none the less, dinner. This is the first day in a long time I felt good enough to get-er-done! Tomorrow, clean the goat and horse troughs and fill them and tidy up the house before work on Friday and Saturday nights(12 hour nights). I think this new schedule will work for me. Now to pop on my jammies and curl up in front of the telly.
Posted by Callie at 3:52 PM
Sunday, November 4, 2007
Well, It's done. I only did a quarter dose. I'm supposed to titrate it. I froze the hell out of the side of my thigh first. I hope I got it IM. Not sure, now that I've done it. I went straight in with a one inch needle. My legs are my least fatty. And I managed to make myself bleed. I'm terrible at IM's anyway. Always make my patient's bleed too. Payback, I guess. Freezing works. Didn't feel it at all. That makes me wonder if it hit the muscle. Oh well, nothing I can do about it now , anyway. Now I'll just wait for the side affects.
Posted by Callie at 4:54 PM
Thursday, November 1, 2007
Kind of sounds like the title of a horror movie, but I did receive a personal phone call from my neurologist. I really like him. Every time I've had a question and left the message with his secretary, he has called me back personally rather than his nurse or someone else in the office. I think that's very cool. And I wanted to ask him which type of MS he thought I was and damned if one of those brain holes took over and I lost my thought train. So anyway, I get to titrate the drug over some months. Although I'm not sure how I'll get a quarter dose out of a full dose that equals only one half milliliter. Well, I'll figure it out somehow. Anyway, won't start until Sunday.
Posted by Callie at 6:15 PM
Monday, October 29, 2007
I chased up the the Neurologist, the "specialized pharmacy" part of the insurance company, the Avonex case worker called this morning. I didn't realize that the treatment falls under the "specialized pharmacy". Was that weird! , "Oh, Miss, I'll have to transfer you to the specialized pharmacy" And I'm still not sure what's going on. I just want to get started so I can see how this will affect me before I get started on my 2 day weekend program. And so I know whether I can stab myself or find a neighbor to beg or whether I'll have time to make it home from work, if someone at work can do it for me. What a sissy I am, I keep thinking. I told my husband, that he knows that if I have to do this myself , I'll sitting in the john or laying in the bed balling whilst trying to give myself this injection. Geese! What a sissy. How do y'all do it?
Posted by Callie at 12:12 PM
Sunday, October 28, 2007
Have to go back to work tonight and then Tuesday and Wednesday nights as well. A weekend to Kentucky to Georgetown College with our daughter to check it out and then home. I will start my two weekend shifts the next week. Every Friday and Saturday night. Still haven't received the Avonex yet. Hoping I can get started soon , so I'll know how it will affect me before starting back to work. Looking forward to that , Not. Hope it doesn't make me too ill. Not sure I can inject myself. The very thought of it. Ick. And I'm a nurse. Everyone says well you're a nurse. you should be able to do that. Well, it's quite different on someone else rather than yourself. Like self mutilation. Anybody with any helpful hints out there, I'll gladly take into consideration.
Posted by Callie at 2:05 PM
Friday, October 26, 2007
Hey, I'm having a pretty great day. Feel well. Have been able to thoroughly house clean, including de-scumming my daughter's shower room and touching it up with some paint. Laundry done and put away. Just a quick tidy up of the kitchen and all is well and I believe that it has allot to do with the support I've received from all of you out there in just a 24 hour period!
Posted by Callie at 2:04 PM
Thursday, October 25, 2007
It's amazing how nonchalant everyone I've had to deal with this in the medical profession is. That is the Neurologist's office and the Avonex company who promises to send out a Nurse to teach with the drug. Oh we'll be contacting you in about 3 to 4 business days. Has anyone else experienced this during diagnosis? They have no follow up appointments set up and said that I don't need to unless I have problems with the Interferon beta 1a and no lab work until I've been on it for a month. Is this how it all begins? My regular Doc has been a saint. She has ordered me some Valium so that I can muscle relax at bed time and promised me that if I was a big enough baby about giving myself the IM injection, she would order me some emla cream. See I am an RN, but a critical care pediatric one. However, it does baffle me how flip they all are. I've gone ahead and changed my work schedule to accommodate this MS, which I think should stand for monkey shit. Now let's just get the damned ball rolling!
Posted by Callie at 2:45 PM
And oh by the way, Having an MRI is a noisy claustrophobic treat that for me was unpleasant even with Valium on board. Unfortunately for me and those who have to stick me, I have crappy veins, because I had to have dye injected in me for these MRI's. And they take over an hour of lying still in a tiny tube with noise and vibration and having your head and shoulders strapped down. Yeah, fun, too. Although, I can think of worse tortures.
Posted by Callie at 6:40 AM
Avonex. It's a once a week intramuscular shot of Interferon beta 1a which from what I hear makes you quite ill with chills and flu-like symptoms for months until your body gets used to it, if your body ever gets used to it. I'm still waiting for the drug. You just don't take the prescription to the pharmacy and pick it up. You first must sign your life away to the company that makes Avonex and your Neurologist has to fax the script to the company and they have to fax the script to your insurance company who then mails it to you with a bill, I assume. Of course I've had to be pro-active with this and call the Avonex company and the neurologist and my insurance company and I guess now I have to wait. You have MS, so deal, you're on your own. Kind of like being shoved off the plank of the pirate's ship in the middle of the ocean without the muscle strength to swim to shore. A whole lot of fun!
Posted by Callie at 6:28 AM
For me, It started with subtle changes. Things I attributed to just getting older. Muscle stiffness, walking slower than my family on outings Having to use a bucket or step to get on my horses to ride. Being off balance on occasion. Well allot and just blowing it off as me. Taking longer to peel myself out of the car whilst everyone else was waiting for me to get out. Slurring my words and having trouble getting my point across and expecting everyone else to read my mind ( I attributed that to working 12 hour night shifts three times a week ). And then this year after a lovely labor day weekend at our local county fair with my husband, I woke up with an acute vision change in only one of my eyes, in which I initially blew off again as a sinus issue, eventually I was forced to the opthomologist and a thorough eye exam and follow-up which then led to the first of my MRI's, which showed lesions that looked like MS with clinical correlation and a Neurology Consult and now a second MRI of my c-spine, first one was of my brain, which also showed lesions. And the talk with my Neurologist brought me back to at least a year of "flare-ups", at least two others, one in January of 2007, in which I woke up with extreme and annoying numbness in both arms and hands and the classic MS symptom in which one bends your head forward and you get an electric shock type feeling that runs down your arms and finally a weird month of horizontal vertigo in which I felt like I was walking around in a hamster ball in December of 2006. All those episodes and correlating MRI's , "Callie, you have MS, and I'd like to treat it with Avonex."
Posted by Callie at 6:06 AM