Monday, August 31, 2009

Last day o the month

Have to post once more just to say I did. :) Feeling fine today. Yesterday I felt really yucky. I was tired most of the day and I just felt 'odd'. It is very hard to describe the feeling other than a sort of buzz or something. It happened on and off through the day, and was mainly in my arms if I had to narrow it down a bit. Certainly I didn't feel anything odd in my head or neck like that. At any rate, Julie and I agreed that I need to call Dr. W's office and see if I can see him sooner than originally set. We want to see when he can set up a round of steroids for me. I don't really know what that means or entails, but this was way too odd to overlook.

On another note, we are getting ready to have the floors redone in the house. I'm looking forward to wood everywhere.

Friday, August 28, 2009

Post Shot 3...

Not too bad this time around. The ibuprofen and earlier time did help quite a bit. I need to shorten the intervals ofr ibuprofen overnight though, I still had two fever / feverbreak spells which was not too fun and interrupted my sleep cycles in addition to the med wake-ups. The day was fine and I'm good now. Still tired from not enough real sleep, but ok.

Went out to Texas Roadhouse for a steak with mom and the family last night. The steak was nice as I haven't had one in about a year.

Wednesday, August 26, 2009

Shot #3

Well today is shot day. I took 800mg of Ibuprofen about 30 minutes ago and took my shot (3/4, next week is full). The boys watched tonight and had a bunch of 'did it hurt' questions. I'm planning on another 200mg at 7pm, 9pm, 11pm, 2am, and 6am. I am hoping that keeps my side effects in check better than last week.

I'll post again tonight if I notice the decline.

Tuesday, August 25, 2009

Normal for one more day...

Well things have been back to normal this week I'd say. We went to the lake with the kids and went swimming. As usual that wiped me but I expect that anymore. Julie and I have a plan for my shot tomorrow night. We'll see how it goes as far as side effects. Not much to say but I didn't want to be silent for too long.

Thursday, August 20, 2009


Well I'm told that I am back to normal. It was said this morning that I "could have given lessons to women on how to PMS". If that isn't a description... Anyway, glad to know that is over and I think I may plan to stay in bed longer as well as take the shot earlier. Will see next week.

Wednesday, August 19, 2009


I just have to say I still 'feel contagious'. I have that feeling that if anyone were to drink ofter me or touch anything I have they might get sick too. Just completely weird to feel this way and NOT be sick.

The morning after

Wow. Where to start. Took the shot (1/2 dose) at about 11-11:30. Had taken ibuprofen at about 8 and 10. Took 1 more as I got in bed, I'll say 12 for this purpose. At 5:30am I wake up to bad shivers, 0 energy, and achey all over. I took some more ibuprofen and made it to bed, bundled up as best I would and was awake with the shivers for another hour. I finally got a touch of sleep before the alarm woke me at 7. I woke up cold, still no energy, and still hurting. With the exception of the fever, my symptoms remain. All of the work I've done to get rid of fatigue are for nothing today. I'm as tired as I have ever been. It is hard to walk at all. It feels like I am constantly fighting gravity. Every joint hurts. Not 'pain' like needles but ache like a bruise. They aren't stiff, but if I touch them (rub etc.) it irritates them. Just an absolutely bizarre and terrible feeling. I hope to be better as the day progresses. As long as I sit still, it isn't too bad.

I also had a very bizarre dream in my fever pitch. I'll tell the tale here, but feel free to ignore it as it is REALLY wierd. Oh, and it will help if you play Warcraft because there are references to it. So the stage is set by me being me, Kelsey my dog being a shape-shifter into Gandalf the white (visual picture for you). There is another dog, the color of a golden retriever, but short-haired and slightly larger than Kelsey, perhaps 20 pounds. So 'we' (Kelsey and I) have a suspicion that the other dog is sneaking out at night so we pretend to be asleep to follow it. Of course, it leaves and Kelsey turns into Gandalf and runs after the dog with me in chase. We run wherever to find 3 Dark Iron dwarves fighting a huge Jarmungar (much like an Ulduar event) in the snow. There is a cave opening to the right, nearer to us, and as you go in the distance, you can see we are at the base of a snow cliff, on a ledge that falls away again to our left. Anyway, this yellow dog runs at them all and they all disappear when he gets there. No dog, no anything, just me and Gandalf and snow. We decide to go into the cave, where we are at the bottom of a very large shaft-like room. There is a ledge near the top on the far side. The middle is generally hollow (like a well) and who knows how far down it goes. Like a circular staircase on each wall, there is a path going to the top ledge. In the middle there is also a path, but it has a parabolic curve to it so you could never climb it, just slide down it. So there we stand. Behind us the 'bad guys' reappear and we take off around the side to the top. When we get to the top they decide they need to get us and start scrambling up the middle slope. No problem except for some reason Gandalf loses his footing pulling on my feet and I'm holding on to the ledge and they try to get us. My grip fails, we slide down, knocking the dwarves off the sides down the well shaft and we both splat the Jarmungar against the lower wall. I wake up. Bizarre Bizarre.

Tuesday, August 18, 2009

Shot #2 tonight

I'll post again after I do it. Certainly if I have side-effects. Just lettin' the world know. :)

Monday, August 17, 2009


Today is weird. Surreal in fact. I am wavering between throwing up and crying and being angry. I'm all over the place. One of Chandler's friends from school is having brain surgery today. They found a tumor the size of a pool ball in his head. We are praying as many others are, but again we feel so helpless. It is not in our control and I can only imagine, and that not very well, what it must be like to have your little boy being cut on to save his life. They don't know if it is benign or malignant yet, but just to have him in that situation... It makes me take stock in the relationships I have. I love my family and hope they know that. It also so shadows anything I may be dealing with. My issue seems petty to me considering the life-struggle he is going through. Anyway, just had to get that out.

Thursday, August 13, 2009

Mowed the lawn tonight

I do that from time to time :) My leg is filled with lead now. It is quite amazing how exercise just fatigues it so badly. Hrad to get it up and over the edge of the tub to take a shower, let alone not fall down while in it. I was thinking tonight after I got out about how I used to get dressed standing up. Sure, lean a little against the bed to get the socks on but all in all, standing. I miss that. I have a nice ottoman in the bedroom I sit on to put my pants, socks, shoes, etc. on. I can stand still and put my shirt on sure, but there are a number of things I now do sitting. Just an observation.

I still have not felt any ill effects form the Avonex injection. That is great. Next one is Tuesday night. My left ankle is hurting again in the smae place as a few months ago. I have no idea why. I would like to at least remember the injury. Go figure.

Wednesday, August 12, 2009

Granite is in

I spent the evening redoing all of the plumbing since our granite countertops were installed today. I'm tired but I'm glad it is done. They are beautiful. Not been too tired as of late (once I get going in the a.m.). My insurance will not cover the Avonex lie other meds so it will cost me about $3000/year. I have told the manufacturer I am interested in their assistance program so we'll see what happens there over the next few days.

Monday, August 10, 2009

Zero hour came and went

...With little pomp and circumstance. The nurse came at 7 this morning. We went over the instructions and such (just a formality really). The best part was having Julie right by my side the whole time. I couldn't ask for better support than that. The whole thing, while EXTREMELY nerve racking to poke myself with a needle, was really a non-event. It did not hurt hardly at all (much less than arm shots, taking blood, etc.) and certainly the actual medicine delivery did not feel like anything. I was expecting to feel some side-effects today, but with the ibuprofen I've taken, I have no real after-effects that I can tell. About an hour after I was feeling a little tired, but that could have been lack of coffee. My injection site is not sore or anything like that.

Biogen called today and had me call my insurance to verify they were 'moving me along' and they had faxed my Dr. about authorization for the prescription. I called Dr. W's office and they did get that fax so that should go back to the insurance carrier tomorrow. This may be less of a deal than I had expected (let's pray it is).

Anyway, so far so good. I'll inject again next Tuesday evening and then moving to Wednesday nights.

Sunday, August 9, 2009

Tomorrow morning...

Well it is 11 and I'm nervous about tomorrow morning and the whole nurse / shot thing. Reality is closing in on me. Anyway, headed to bed, going to take some advil... will let you know how it goes.

Thursday, August 6, 2009

The Avonex train is moving

I talked with Biogen (makers of Avonex) today and I will get my 1st shipment tomorrow. Monday the nurse will come to the house to show me how to do the injections. This first month will be a ramp-up to full doses (1/4, 1/2, 3/4, then full doses). I also got in my Vitamin D3 last night. I am starting that as well. So far, nothing noticeable.

Monday, August 3, 2009

New Week

Well my mind is reeling. There is so much I've been reading and talking to others about (as far as treatment). I talked with Kim (a PA friend of mine) yesterday about the solumedrol and he basically said there is little to worry about, certainly in the short run. Take the meds and see what it does for me. He certainly thinks the other can be done, but he explained the benefits of high dose steroids for inflammation and since we are not talking about a long term course, to do it. Anyway, I trust his opinion very much and I think his was the one that has really changed my thinking. His description of the side-effects and such were a great comfort (they aren't as terrible in all likelihood as I had imagined by others' descriptions). I'm going to call my neuro today and see if I can get in to talk to him about the specifics he had in mind.

Beyond that, I have been waking more often with the buzz / vibrations going on in my arms. This morning was no different if even a bit worse. I have no direct comparison to the feeling other than it is a very weak vibrating feel that you couldn't see I don't think if you were looking at the muscle, almost a tingle, but to me that implies a bit of prickly like the feeling when your foot or something is 'waking up' from 'being asleep' which we all have had. The best comparison is what is feels like if your cell phone is ringing (on vibrate) on the bed with you a few inches away. You can feel it, but it is very faint. This morning it was in both of my arms and hands. Very odd indeed.