Wednesday, November 29, 2006

IV Solumedrol: Day Two

Another good day. I feel very fortunate. I had another wonderful nurse and we were able to speed the drip up a bit today. I slept for three hours after the nurse left which is so not the effect I would have predicted that steroids would have on me. I thought for sure I would be crazy-bouncing off the walls like a howler monkey but instead, they are just knocking me on my butt. Go figure!

My body must have become somewhat accustomed to the steroids. I finished in a little under 2 1/2 hours with no terrible head weirdness today. I am unsure of what physical help it may have given me so far since I have come pretty far without the steroids. I was still a little off balance today. I was hoping for that to go away, and the Lhermitte's Sign (the weird feeling down my right side when I lean my head forward still seems to be there, although maybe not as severe. I can still see a little better, which is worth getting the steroids even if none of the other problems get any help from them. I still have the bad taste in my mouth and still have a headache , although neither is as severe as yesterday.

The IV from yesterday had blocked itself off so they had to start one in a new spot today, so rather than have that thing in my arm again tonight I just told her to take it out and start a new one again tomorrow. Needles don't really bother me, so I'd rather not have to deal with it and be able to sleep without feeling like my arm is bound tonight. That was my biggest challenge trying to sleep last night, having a tube sock on my arm. Welcome to claustrophobia land.

One more day to go.

So last night...

So last night I was lying in the bed watching Will & Grace. I love to end my day with that bit of humor, so several nights a week I watch Will & Grace repeats before I go to sleep. Who can have a bad nights sleep after watching their crazy antics? When the show was over and the credits were rolling I suddenly realized that I could read most of it. It wasn't entirely clear but I could certainly see them better than I have seen them in more than a year!!! Of course, then I had to channel surf and read the digital cable guide to see if it was just a fluke. I could actually see the names of the channels and the programs that were listed. Again, not perfectly clear, but I could read them without squinting and leaning forward. Did you know that the small word "the" is inside the C of the CW network's logo? I leaned over and poked my husband to wake him up to tell him that I could read the credits. LOL, the man sleeps like a dead person. He barely remembered it this morning.

I eventually had to get up to go to the bathroom and everything in the bathroom was more clear to me, the tile, the floor , the rugs. The hall oriental rug design was vivid. It was as if I had been looking at things through a dirty window and someone washed it! Woo hoo!!!

At midnight I came downstairs and called my nocturnal sister who I knew would likely still be awake to tell her that I could see better. I knew she would be happy for me. I just had to tell someone. Someone who was alive and would actually be able to respond.

This morning I still have a headache, but the bad taste has gone for now. The vision improvement isn't as good as it was at midnight last night but maybe after the next two treatments it will stick. All I can say is "bring on the steroids"!

Tuesday, November 28, 2006

IV Solumedrol: Day One

So far so good...It took about three hours for my IV drip instead of the one hour that it is supposed to take. Each time she would speed up the drip my head would start to feel really funny and sort of like the top wanted to blow off. I've had a tiny bit of racing heart and tightness in my chest but barely enough to mention. I do have a headache, but even it isn't unbearable. Ibuprofen didn't really seem to help it at all. The weird taste in my mouth was easily masked with Ice Breakers gum. I chewed it the entire time I was being given the drip and I only had to get a new piece once and that was because I thought I would switch it up and have a mint. The mint didn't work as well as the gum. That Ice Breakers has some long lasting flavor!!! Water is unbearable. The taste of it is so warped by the Solumedrol that it is nearly impossible to drink, but I am trying.

I tend to be "opposite girl" when it comes to medications and so instead of hyping me up, I was asleep within an hour of the time the nurse left. I guess I won't be refinishing my floors, painting my walls and decorating the house for Christmas during these three days.

The nurse from Option Care was wonderful. I am very pleased with them so far.

Time to go back to the couch. My head still feels a little "woo woo".
Wish for me that tomorrow's treatment goes as well as today.

Conflicting Emotions

Today I am both sad and mad, as well as scared. In 1 1/2 hours I begin my IV Solumedrol treatment for the first time. The fear of the unknown is just not very much fun. There will be side effects for sure, but once again it is like playing Russian Roulette. You don't know which ones you are going to get until they happen. I will likely swell up, just what I need. Already I have no idea who this woman is who looks back at me from my mirror and after the steroids, she sure will be unfamiliar.

I wish they were administering it somewhere besides my home. I wish I had told them I would just come to their facility. My home is my haven, my safe place and now there will be this memory in my house. It sucks!

Monday, November 27, 2006

The First Treatment

Well, we made it through Turkey-day without a hitch. I was a little tired the day after Thanksgiving, so I just sat and edited photos all day to catch up on my energy. It was great to have both kids home for the holiday, although I use the word "kids" loosely since they are actually both adults. Today I will take Britt back to school and try to mentally prepare for tomorrow.

Tomorrow begins my first treatment of IV Solumedrol (steroids). My new Neuro feels that I have enough residual effects going on in my body from the enhanced lesions to justify at least a good effort at putting them into remission. I totally agree. It may not help, but then again, I may feel almost brand new after the side effects of the actual treatment are gone.

An in-home healthcare nurse will come to my house for the next three days to administer the IV medicine. They will put in an IV port and leave it there for three days. I hope they are able to put it in a location which least affects my mobility. When I was in the hospital, they put it on top of my right hand. That wasn't a great spot for a right-handed person. Of course, as my husband would say "What makes you think it is about you?" LOL, he is so right. It is not their job to consider my inconvenience. It is their job to get it done!

There is a huge list of possible side effects from the IV Solumedrol, hopefully most of them are temporary. I'm a little freaked out by the unknown aspect of the treatment. The needle thing is no big deal at all. I have no fear of needles, of blood work etc. My fear is of the medicine itself and the effects it will have on me.

I had to take oral steroids in 2000 for a horrendous case of poison ivy and they were no fun at all. They totally altered my personality and led to tremors in my legs that warranted them being discontinued. The Neuro says that sometimes IV steroids have a very different effect from oral steroids. I can expect my heart to race, sleeplessness, weird taste in my mouth, a lot of trips to the bathroom, drippy eyes and the list goes on and on. Maybe I will be lucky and the side effects will be minimal. A girl can dream can't she?

I am a high energy person, thus far, even with MS. For those of you who know me...can you even imagine ME on steroids? It should be interesting to say the least! As if I don't talk fast enough already...

Keep me in your thoughts over the next few days as I take a new road on this journey that I was forced to travel.

Monday, November 20, 2006

The Miracle Cure

I only have a few minutes today. I have to buy Thanksgiving groceries and continue cooking for the holiday. Quite frankly, this year I am just thankful that I am able to cook at all.
I just had to tell you about the miracle drug that my new neuro gave me. In my previous post I told you that she had given me a shot of Depomedrol/B12. Well I'll be "dad-blasted" (that's southern for damn. ;) if it didn't relieve the right arm pain that I have had since July. I pulled a muscle or something in my right arm when my niece and her family were visiting in July and it has hurt every day since, some days worse than others and having to use a mouse so much to edit photos certainly wasn't conducive to it healing. Well, "bring on the hypodermics" is all I can say! My arm often hurt so bad that I couldn't stand to lift a coffee cup. Woo hoo! It doesn't even hurt when I have it all tangled up with my pillow at night.
Time to get busy. The grocery stores are waiting.
Just in case I don't get to blog again until after the holiday, Have a Happy Thanksgiving!


Friday, November 17, 2006

Turn out the lights, the party's over...


I have never had a female doctor until now. My children had female pediatricians. However, until now I have never had a female doctor. It is not that I don't think they are capable; the situation has just never presented itself before now. When I moved to Ohio in 1982, I used the family doctor that my husband's family used. He helped me get past an awful addiction to Afrin nose spray (Stay away from that crap! It shouldn't be sold over the counter!!!) and from that day forward he has been my hero. He is still our family doctor and I dread the day when he will begin to think about retirement. I trust him beyond question. When my male gynecologist retired, I stayed with his replacement. My dentist is male, my previous neuro was male, even the doctor who operated on my toe was male. So this having a female doctor, it is a little foreign to me. Again, so no one bashes me about the female doctor thing, it isn't that I have refused a female doctor, the situation has just never presented itself. I have had the same gyne (the replacement) for about 18 years. I have had the same family doctor for 24 years. I had the same dentist for about 22 years, until he retired a couple of years ago and then I just used his replacement. So this is not a case of discrimination.

Women are generally not my biggest fans. I realize that is a broad statement. Sometimes the truth hurts. OK, it doesn't really hurt. I just really don't care, which is probably why they don't like me in the first place. Women dress to please other women. Women think they are putting on makeup to show off for men, but they aren't. God forbid, you should run into a woman you know when you have no makeup on. You will be scarred for life.

As I was discussing the new, yet unseen female doctor with my sister yesterday, I was voicing my inner weirdness over her being female and me never having a female doctor before and the fact that women don't really like me. Of course, she is my sister, so she likes me and probably can't understand why other women don't like me. She didn't necessarily agree with my assessment of my likability factor when it comes to other women until I reminded her that the women in our family come with a built in "flirtability". (I don't think it is just the women. I have seen many a woman swoon over my four brothers as well.) [Spell-check keeps trying to tell me that flirtability is not a word. Get over it!] I am overweight, have some "big ol' teeth" and I have let my natural gray hair reign supreme, but I can still get my flirt on if I need to. It is a gift. A gift that isn't really going to work very well on a straight female doctor. I guess I will have to map a new route!

Just so we are clear...I don't intentionally flirt. It just is. It is absolutely harmless, I love my husband with all my heart. Maybe it isn't so much flirting as turning on the charm. Although I can't for the life of me figure out how those two things are different. Whichever, it has served me well over the years and I am not about to disown it now. I own it, and I hope that I live to be 86 and still own it.

Back to the female Neuro...after all, this was supposed to be about her. I guess not only am I a flirt, but self-absorbed as well.

It was a little weird at first. She was very nice and had a wonderfully calming presence about her, which is in direct contrast to my previous neuro who was in a constant state of confusion. I don't really want to bash him. On a personal level, he was a nice guy. However, as a neuro for such an important disease, he was just a little too scatterbrained for me.

The new Ms. Neuro spent a lot of time with me. I was impressed with that and the fact that she suggested some treatments etc. that I had openly wondered why the other neuro had not suggested the same things. (No matter how I try to fix that sentence, it just won't fix so take from it what you can. That is all I am saying.)

She gave me a shot of Depomedrol/B-12 and as soon as Thanksgiving is over, I will get a course of IV Solumedrol (steroids) in hopes of turning the light off on this lesion that is still hanging on and causing very aggravating, although not unbearable aftershocks. This thing in my right leg, I am finally able to describe what it feels like. When the heat washes down my leg, it actually feels like someone is pouring a bucket of warm water down my leg. Last night it had moved up as high as my ribcage, which is how high the numbness went when the onset of this devil started in September. If nothing else, this tells me that it is likely just the same old long-partying lesion that is causing this somewhat new sensation. Will somebody please turn off the lights and tell him it is time to go home.

Wednesday, November 15, 2006


Can I get a big WOOT WOOT? I have an appointment with my new neurologist tomorrow morning. I called today to make an appointment. They couldn't give me an actual appointment until January, but told me that the first available cancellation they had was mine. Luckily they called this afternoon to tell me they have a cancellation for tomorrow morning at 10:00. I don't usually get this excited over going to the doctor but getting in to a doctor right away is truly a blessing. I was unable to get into the Mellen Center at Cleveland Clinic until Jan 2. Even while seeing a specialist at the Mellen Center I will still need to have a doctor closer to home for emergencies. I know a few people who go to her and they speak very highly of her so hopefully she will be able to get me started on something to try and prevent this thing from getting worse.
As fate would have it, I have been feeling very well for several weeks. However, this afternoon I have been having these weird heat flushes through my right leg as well as other little twinges here and there so the timing is perfect!
I'll update tomorrow afternoon. Wish me luck!