Thursday, July 31, 2003

End of Diagnosis Afterthoughts...

After all of this, my life is pretty much back to normal. How could it be completely normal with a new journey ahead of me? My vision is better than it was before my attack even started. I have 99% of the feeling back in my hands and really only have a few lagging symptoms here and there when I get exhausted. There are days when for no reason, I get completely exhausted. There are days when I overheat for no reason, sometimes in the shower. I just have to learn to slow down, get some rest, or take a few moments and relax. This is always easier said than done when you like me and always on the go. I learned, or should I say was reminded, to never, ever take things for granted. I cried the time I could feel my hair again in the shower washing it. I laughed when I could pick up paper and feel it between the pads of my fingers and laughed even harder when I realized that I had been braking way too soon following cars with double vision and most likely looked a bit of a moron. I was grateful I wasn’t cursing the wall for jumping out at me and my rear was happy I stopped falling down the stairs.

The valuable thing I learned through this was to keep faith and keep my mind open. I wonder where sometimes it is that fate and faith cross, but most importantly, I was reminded as to why I never stop laughing…

Monday, March 03, 2003

March 3rd, 2003

I want to stay home so badly today as the pain in my back is ungodly. I am SO sore from the doctor poking and prying in between my backbones yesterday. I stay in bed until noon and go to work. I try to take it easy, but I have so much to do before I leave on Wednesday morning for work. I feel fairly good towards evening and Melanie and I grab a bite at McCormick’s and call it an early night.

Sunday, March 02, 2003

March 2nd, 2003

I get out of bed and for 25 minutes, I feel good. It doesn’t last the pain is excruciating at this point and I can’t function vertically. I lie in bed and call Dr. Francis’ office for advice. She refers me to Mercy hospital for a blood patch, which includes an epidural and taking blood from my arm. My spine didn’t seal and the fluid is leaking into the area around the sac and causing extreme pain that will, on it’s own, take 3-5 days to heal. I am supposed to be headed to California on Wednesday for work and vacation. I decide to do the blood patch and suck it up. Anything is better than the pain I am in. I go to the appointment. The doctor greets me after I practically crawl to the room for the procedure. I came into the hospital bent over practically in the fetal position and waited, lying down, in the reception are for over an hour before someone came to greet me. He seems like a nice guy and I give him the benefit of the doubt immediately, mainly because I can’t see straight and am the most miserable I have ever been in my life. I lie down in the fetal position still dressed, shirt slid up and pants waist slid down on a gurney table. He cleans me wraps me in sterile papers, etc. and proceeds to start. He tries seven times to put in an epidural. He gives me about twelve shots of local anesthetic and stops and tells me that he is having some trouble with the epidural. He tells me that this is the 2nd hardest epidural he has done and that there is an unusually small space between my vertebrae to maneuver. I calmly think to myself that I need to stay calm. He is going to try again. He tries two more times and finally after an hour he succeeds. Nine tries and he finally put the line in. He then goes to draw blood. At this point the thought of a needle doesn’t bother me and I just plain don’t care. I just want to go home. He tries to draw blood. He stabs me six times in the arm and can’t get enough blood. It is hurting so bad because I am dehydrated and the needle is a larger one. He tells me he needs to go into my hand to try. I snap. I can’t physically and mentally take ANY more. I am mentally exhausted. I cover my head with a blanket and cry from exhaustion. Melanie knows that I have hit my limit and leaves the room to temporarily escape the tension in the room. Five stabs later in the hand and another three in the arm and I look like a pincushion with bruises from hell. Finally, he has enough blood and puts it through the epidural to seal my spinal sac. I wait in recovery for a half an hour. I say nothing to anyone. It’s finally time to go home and I get up. I can actually stand and the pain is mostly gone. I feel a little better and I thank him and drive home with Melanie. It feels good to not be in pain, but I know that I need to put myself in a healthier place. I am exhausted, tired, pissed, and mentally have checked out today. I am glad Melanie is around to ease the pain.

Saturday, March 01, 2003

March 1st, 2003

I spend the day pretty much in bed. I agree to go to a benefit dinner tonight the Minneapolis Convention center this evening for Children’s Crisis Nursery. I feel awful, but go anyway. Half way through dinner, I need to leave. I can’t sit anymore and the pain in my head is making me gag. I almost puke twice, two separate occasions, in the bathroom and decide it’s finally enough. I leave and find that once I stand, my head is not so bad. I wait for my ride home and finally when I am home and in bed, the pain subsides.

Friday, February 28, 2003

February 28th, 2003

I go to work. My back is SORE and when I move certain directions, it hurts worse. I also have a small headache and it doesn’t seem to be getting worse, so I stay at work. When I lay down, the headache seems to go away, so I am worried that the sac around my spine didn’t seal right away this time. I stay at home tonight. I was supposed to go out, but I can’t. My head hurts. Jennifer comes over and her, Melanie, and I watch Sex and the City episodes. I fall asleep on the couch and of course, they laugh at me after I laugh at myself. I head to bed around 11:00p.m.

Thursday, February 27, 2003

February 27th, 2003

Today is spinal tap #2. Again, I get to draw blood and have it mindset that I will slap and/or knock out the nurse drawing blood if she messes with me. Melanie drives me to my appointment and she tries so desperately to cheer me up. She succeeds some of the time, but I am still distant, pissed, and fairly quiet. She doesn’t push the issue, she can read me clearly and knows that I am at my limit. Again, I go through the spinal tap, only this time the doctor is an asshole. He doesn’t wait nearly as long for the Novocain to kick in and it hurts like hell at first. I try to tell him I’m in pain and he keeps going. If I didn’t have my naked ass – ass up I’d smack him a good one. The topical kicks in and finally it numbs. He finishes and this time, my back is sore like someone really kidney punched me this time. I lay again in recovery for an hour and Melanie and I drive home, well Melanie drives, and I settle in bed after grabbing something to eat.

Wednesday, February 26, 2003

February 26th, 2003

Dr. Francis calls today. I am now extremely pissed off as hell. It seems that when they did my original spinal tap, they didn’t test for lyme disease bacteria in my spinal fluid, which means another spinal tap is well, on tap. They schedule one tomorrow and I spend the whole day silently cursing everything in existence. At this point, I have had enough poking and prodding. I call my mother immediately after I schedule the appointment for tomorrow and I break down. I am at my ropes end. I can’t take anymore. I am mentally exhausted and this was the icing on the cake. I go to bed knowing what is ahead and I hate every minute up until then.

Wednesday, February 19, 2003

February 19th, 2003

Today I was supposed to call MS Pathways to start Betaseron. I didn’t. I can’t tell if I just put it off because I am not thrilled with the whole Idea or that I was busy at work. Probably both, and either way, I should have called. I am nervous about he insurance coverage and how much they will cover. A bill or two has started rolling in at 80% coverage and I know there will be many more. I have a few estimates at around 10,000-12,000 dollars a year for therapy and wonder how much the medication will actually set me back and is it worth it. I wonder if I will ever be able to switch jobs with no hassle in coverage, etc. I decide now is not the time for me to start. I wait.

Thursday, February 13, 2003

February 13th, 2003

I finally get another request finished for Dr. M/Dr. W’s practice (more childhood doctors). I don’t know what I expect to find or stumble upon on them, but I imagine it would be a good idea to have them within reach, just in case. I find out there is one more to request from Dr. H, which I put in immediately today after receiving it by fax.

Tuesday, February 11, 2003

February 11th, 2003

I thought I would start therapy today already and think I could have, but waited too late in the day. I spend the whole day pouring over information instead of working. I choose a drug called Betaseron due to no refrigeration and the frequency of the injection, every other day just under the skin. Ugh, once again, may I mention I hate needles. I haven’t used the Neurontin for a couple of days and my fingers feel pretty good, but my recall memory is awful. Maybe it’s just me, too much on my mind? I finally got a decent night’s sleep last night. I was tucked in at 9:20p.m. and slept solid. It felt good. It’s been almost a week since I slept through the night again.

Monday, February 10, 2003

February 10th, 2003

I go to my follow up appointment today. I talk with Dr. Francis about therapy options and she checks my reflexes and coordination again. She tells me to come back in three months and tells me to talk to Jennifer out front and set the appointment from now. I talk to Jennifer and pick up the last information on therapy options. I am to call her after I look over the information and choose one. I have taken tomorrow off.

Friday, February 07, 2003

February 7, 8 & 9th, 2003

Mom and my sister Holly drive down and stay so that mom can go to my follow up appointment. We go eat with my Aunt Joyce and hit some thrift shops along the way during the weekend. I make a haul as usual and spend too much money as usual on clothes, too. I didn’t get enough sleep this weekend, but I pull myself through it very slowly. I didn’t go out at all this weekend.

Tuesday, February 04, 2003

February 4th, 2003

Today I sleep in until 7:25a.m. It feels SO good. I am not sore from working out last night. I took about 10grams of ribose before to tease my working out back into my schedule. I slept so well last night. It seems like a long time since I had that kind of rest. Melanie stayed over and we talked about her moving in. Work is busy today, lots of odds and ends. I work out on the treadmill at lunch for 25 minutes. I feel dizzy twice so I slow down and lower my heart rate. I get changed after showering and I have electrical vibrations down my spine. It subsides shortly after. I go back to work and call my mom trying to find my old medical records from my childhood. I find the ones for Dr. S, one of my doctors. One doctor down, one more to go.

Monday, February 03, 2003

February 3rd, 2003

I find my right foot dragging today, but my vision is almost back to normal, in fact it is better now than before this attack happened. I had originally thought my prescription was getting worse, but it was the ms taking over that made my vision worse. I, from time to time read the therapy books I grabbed at Dr. Francis’ office after my vision test and I read as much as I can. The therapy is supposed to keep the attacks from happening again and they include, of all things, injections. I laugh to myself and shake my head on this one. What better way to conquer something you despise. I talk with Melanie and go and work out for the first time in months. I spend 20 minutes on the treadmill and do some yoga. I relax myself and hop into bed. It’s 11:35 and I feel fairly good this evening if I do say so myself. I finally start to get around to getting this into my computer with some sort of order. It was taken from my journal, which isn’t always easy to decipher or read for that matter.

Sunday, February 02, 2003

February 2nd, 2003

I sleep in until 10:30 a.m. and I sleep from 1:00p.m. -5:45p.m. Some friends stop over to look at my roommate's daughter's old stroller. I find some energy to cook and I quickly find myself completely exhausted at 9:30p.m. I call dad, chat a bit, and head to bed at 10:30p.m.

Saturday, February 01, 2003

February 1st, 2003

I catch up on rest during the day all day and go to Zelo with my best friend Melanie at around 10p.m.

Friday, January 31, 2003

January 31st, 2003

I am so happy that Friday is here, but even happier that I finally have slept though the night in over a week. I am still very tired. I look like I haven’t slept at all in days. How appropriate. I plan on going out tonight for girl’s night out. All of us go, but Jennifer, Melanie’s sister. We go to the Local and to Zelo for cocktails. We have a great time as usual.

Thursday, January 30, 2003

January 30th, 2003

I finally, after over a week, sleep through the night.

Wednesday, January 29, 2003

Janaury 29th, 2003

I finally, in a state of complete exhaustion, fall sleep at 4:30a.m. I am so, so tired. I’m starting to hallucinate. I decide to call Dr. Francis’ office for something to help me sleep. Dr. Francis is on vacation, but another doctor in the office prescribes me Ambien to sleep. I notice that I have a dime-sized portion of my right hand with feeling. My vision continues to improve.

Tuesday, January 28, 2003

January 28th, 2003

I finally, with frustration, fall asleep at 3:30a.m.

Monday, January 27, 2003

January 27th, 2003

I fall asleep at 1:30a.m. I am exhausted.

Sunday, January 26, 2003

Saturday, January 25, 2003

January 25th, 2003

I feel pretty good today and rest during the day and I go out with Melanie tonight. We have a great time together, we always do. I go to sleep at 1:30 a.m.

Friday, January 24, 2003

January 24th, 2003

I go to my vision test appointment. I sit down and they stick electrodes with glue to my head. I look like a Martian. I joke with the technician that I hear radio from London through my head. She makes me stare at a screen with a red dot in the middle one eye at a time. It has black and white boxes that change patterns and check my responses from my brain. I finish and she wipes the glue from my head. I go back to work and finish the day. I feel really good today and not so tired. Again it’s Friday, so I go out. I have a great time and once again after bar and stay out with Melanie. I don't know where I find the energy, but it seems to once again drown my worries and the obvious situation.

Tuesday, January 21, 2003

January 21, 22 & 23rd, 2003

I go through the next 3-4 days with the same symptoms and my vision (double) tends to get better. I have a vision test on Friday at 1:30p.m.

Monday, January 20, 2003

January 20th, 2003

Today is my spinal tap. I go to work today around 9:00a.m and am very, very nervous. I head to my procedure with mom. I find out I have to have more blood drawn before the tap. I am so pissed off. Nobody told me about the blood draw stuff. I am about ready to spit needles. I hate them and have been poked enough. The neo-nazi needle nurse stabs me abruptly. I take every last ounce of calm I have left to keep from punching her and my mom reads me like a book knowing I could have snapped at any moment at her. The nice stab she gave me later bruises quite nicely for the next 2 weeks along with the IV bruises from the IV line. I look fantastic. Almost like someone beat the hell out of me. I go to the tap procedure room. I lie there and try to get comfortable. My back spasms and I can’t get comfortable. My mom is there and she calms me. I cry silently. I don’t want to do this. The doctor starts with the cleaning and then the Novocain shot. It stings and it pinches and then it really burns. I hate needles. UGH! My butt and legs go suddenly cold. IT feels like someone is poured ice water down the crack of my rear. The doctor tells me I will feel some pressure. It feels like a dull backache. It’s uncomfortable, but not excruciating or anything. He lets the fluid drip while the table I am on is tipped at a 45-degree angle head up. He says the worst is over and we chat. He asks me of my employment and my family and my diagnosis and recent and past tests. He takes 8cc’s of spinal fluid and tells me about the spine, its fluid, its color and the purpose of the fluid and what you can tell from a spinal tap. He notes my curiosity and he shows me the vial of fluid. It’s clear and acts like water. He finishes about 20 minutes later and I roll over face up to a recovery table and wait an hour for good measure and drink some juice and eat some food. Mom brings me a turkey sandwich and I inhale it. She tells me I should have showed my butt to the cute doctor walking by to ease me up a bit. I finally start to find the situation funny. She makes me laugh again by telling me I am lucky that my father isn’t there to play with anything and everything. She notes specifically the up/down button on the recovery bed for my sake. I wait an hour, get dressed and go home. The drive home is a little uncomfortable, kind of like someone drop kicked me in the kidneys. Mom and I order pizza hut, start a fire and I lie down on the couch and rest in the living room. Melanie picks up my Neurontin prescription that Dr. Francis calls in for me. I eventually fall asleep and rest. I sleep fairly early tonight (10:00pm).

January 20th, 2003

Mom and I pick up my prescription and take it easy throughout the day. I start my oral steroids and have a spinal tap scheduled for tomorrow. I am dreadfully nervous. The Neurontin is out. The samples lasted through Saturday afternoon. I make a mental note to call Dr. Francis tomorrow while I am at it, as my hands are starting to hurt very badly again.

Sunday, January 19, 2003

January 19th, 2003

Mom and I go to Mankato, eat Chinese buffet with my sister Lacey and I feel pretty good, just tired. We drive back and I start my IV treatment. I fall asleep half way through. I am so exhausted. I finish the last IV treatment and go to sleep. I sleep until 1pm.

Friday, January 17, 2003

January 17th, 2003

I go to work at 1:30p.m. to set up Citrix, a remote email server, to work from home. Our work IT guy shows up at 3:50 p.m. He sets my computer up and I finally leave work at 5:30 p.m. I go driving and clear my head. I talk to my friend Michael and stare at the city skyline for an hour and a half blankly. It’s Friday, and the girls are coming over before we go out for girl’s night out. I start my IV drip at 7:00pm. After much procrastination and dread that the IV needs to be redone again, it finally all goes well for the first time. I start the drip and I start to get ready. Jen can’t look at me while she is over and I don’t blame her. I say nothing to them about the IV etc. and I tell them to just go ahead at 9pm for downtown and I will follow when I am done. I tell them to put their mind at ease so they don’t have to see me all goofy with wires and IV everywhere. I finish with no problems, flush my IV and finish getting ready. I am so wired. I go down town with the girls and have a great time. I’m not supposed to drink, but I do anyway. I can’t stand being so up. I fell like I am on drugs. I am shaking terribly and go for a drink to bring me down. I lay off the drinks after 3 and call it enough. Michael sends a limousine for us and picks us all up. We stay out all night, after bar, and Mel and I come home Saturday morning. I don't really have the energy for it, but I don't care.

Thursday, January 16, 2003

January 16th, 2003

It’s night two of therapy. Mel is with and very helpful. I start to flush my IV and my right arm bubbles up. I try again. Mom calls Accredo Therapy, the IV provider, and they have a nurse call me back. It’s 6pm; a nurse named Deborah calls back and alerts me that it will be 10pm before she is able to come over and fix the IV. Each IV treatment is 2 hours and I know it will be a mere 1:30 am before I get to go to sleep that is if I can sleep. Last night took me 2 ½ hours to wind down from the steroids. I go to the bathroom and break down into tears. I ask “Why me?” and keep telling myself out loud that this isn’t fair. I finally calm down after a few minutes and I go try to sleep. I can’t. I go in the tub for a hot bath until the nurse gets there. At this point, I am livid. I hate needles and really hate life at the moment. She comes over and throws in the IV like a pro and off she goes. I thank God. Everything runs smoothly and I try to sleep. It’s 2am and I finally sleep.

Wednesday, January 15, 2003

January 15th, 2003

A nurse named Jessica comes to my house. Courier delivered all the supplies earlier today. She shows me the ropes of how to clean and start my IV drips and she inserts an IV catheter. Did I mention I love needles? It doesn’t go in. Imagine that. I think God is trying to get back at me for something. She stabs my right arm and finally it goes. She finally does the two-hour drip and all goes well. No reactions, but after I am wired. Really wired! I talk to my dad on the phone after I am done. He later tells me two days later he couldn’t understand a word I said to him the entire time we talked. I sleep finally at 4am.

Tuesday, January 14, 2003

January 14th, 2003

My father and Nina leave this morning, still joking about the incident from the night before, and my mom is on her way to see me and to go to my appointment tomorrow. My mother is driving when Dr. Francis’s office calls and asks to reschedule for an appt. today at 12:45p.m.this afternoon instead. It is 10:00am now and I move the appt. to 12:45pm and call my mother to tell her. She asks if I want to wait for her. I tell her that I’ll be all right and will call her when I am done. I go to the appt. before she gets there only because I don’t know if I can keep from breaking down in front of her. Dr. Francis shows me the imaging films from the neck and spine MRI. There are lesions on both consistent with MS and she believes this to be the cause. She lets me digest this. Again my eyes fill with tears and flow down my face. I am so shocked I am not even crying, tearing rather. She explains that I am in the middle of an acute attack. She says she would like to start a steroid treatment of 4 days by IV at home and a 6-day oral steroid follow up. I schedule an appt. for tomorrow the 15th to come in with my mother again and talk. I leave to go and I set up the IV treatment with Jennifer the admin before I leave. I am in shock again. I schedule the therapy to start on Wednesday, the 15th.

Sunday, January 12, 2003

January 12th, 2003

I go out with my friend Michael to talk. In the meantime my dad and his girlfriend try to burn down my apartment. Well, maybe not so much, but when they tried to start a fire in the fireplace, the damper didn’t suck up the smoke and ended up filling the apartment and the hallway, setting off the alarm. The fire department was called, and so was I by two panicking people in the middle of dinner at Morton’s. It ended up being just a bit of smoke and the fire department left shortly after. It helped bring a little humor to the next few days and take my mind off things. I start to think that maybe God has a sense of humor through all of this after all.

January 12th, 2003

My father and his girlfriend Nina drive to be with me and stay a few days. It’s good to see them.

Saturday, January 11, 2003

January 11th, 2003

I consciously try not to think about my situation today and during this weekend. I have a follow up appt. set for Wednesday the 15th.

Friday, January 10, 2003

January 10th, 2003

The next day I go to my MRI. It’s a long one, so I brink my Nora Jones cd to relax me. I do fine, but I still can’t think straight. They stop the MRI and inject me (yea! another needle) with dye and we continue. All goes well.

Thursday, January 09, 2003

January 9th, 2003

I see Dr. Francis for the first time. She is a darker, foreign lady. I can’t quite pinpoint her accent, but I don’t ask where she is from. She is very calm and has a great presence about her. She talks with me briefly in her office and then tells me to come into the exam room and change into a really hot pair of medical shorts. She tests my walking, my senses, and scrapes my feet, hands, and arms with a broken swab end for feeling. She asks me to get dressed and come to her office for more discussion. She tells me it could be one of three possibilities. 1. A reaction to something I have eaten, etc., but she has ruled this out. 2. A viral inflammation or immuno inflammation such as lupus, lyme disease, or even possibly diabetes. 3. Multiple sclerosis. She talks briefly about the first two and lingers on the last for around 10 or so minutes. My eyes fill with tears. She is sending me to the lab for blood work to rule out the lupus, lyme or diabetes. She also schedules an MRI for my neck and spine with contrast imaging for tomorrow at 11:15 a.m. I go to the lobby and sit and wait for the admin Jennifer to call me. I stare into space already knowing my diagnosis before it has come. I call no one. My phone rings twice and I don’t answer. I wait and she gives me my paper work and sends me down a level to the lab. They draw 10 tubes of blood and I can’t think of anything, at the moment except how much I hate needles. Other than that my mind is blank. Dr. Francis had given me some samples of Neurontin, which I forget when I left her office, so I go back a level to retrieve them. She says they will stop the tingling and pain in my fingertips so it doesn’t hurt to touch things, most of all to wash my hair, but it won’t help the numbness or make it go away.

Wednesday, January 08, 2003

January 8th, 2003

It’s 1:30 in the afternoon. Dr. Francis’ office calls and sets an appt. for tomorrow the 9th. I realize that my depth perception is off and I can’t grab things on target anymore. I overshoot my line of sight and my vision is slow to focus. It’s getting annoying, especially when I am driving.

Tuesday, January 07, 2003

January 7th, 2003

I go to Suburban Imaging in Maple Grove to do my MRI. Akram, my ex-husband drives me; it’s way too early for me to function. Luckily you can most of the time rely on the ex-husband/ex-boyfriend to help you when no one else can (if you are still friends, that is). I bring my Best of Bread cd and the tech (a very nice lady in her 40’s) is thrilled. She asks me to keep it. To her disappointment, I say no. Akram and I grab breakfast at McDonald’s afterwards and I head back to work. My mind wanders aimlessly on my way back to work and I finish the day exhausted from thinking.

Monday, January 06, 2003

January 6th, 2003

It now hurts to put clothes on. It hurts to wash my hair. I cry when I do either and I dread having to do both in the morning. I have tripped up the stairs a number of times and fallen down the stairs twice and landed on my rear both times luckily. My hands are completely numb. I can’t feel anything. I call the neurologist and explain my situation. I ask if there is anything they can do. They call back 10 minutes later and have an MRI (brain scan without contrast) scheduled for 7am tomorrow. Again, my sense of something is wrong kicks into overdrive.

Saturday, January 04, 2003

January 4th, 2003

Dr. T tells me to go to a neurologist; my symptoms are out of his realm. I call for an appt. The earliest available appt. is January 28th, but they put me on a cancel list and will call if anything is open.

Friday, January 03, 2003

January 3rd, 2003

The girls (my friends Jen, Tam, Mel, and Meg) are all together and it’s the birth of Girl’s night out. It’s a long, long, long night as we bond and get to know each other a little better. Again, a much needed break for my worrying. I try not to, but we're just not built without worry in the womb.