Sunday, February 28, 2010

Three down...two to go....

Three days of steriods that is......only two more days of swallowing the 16 pills....so far I seem to be avoiding the increased appetite cause let's face it, I do NOT need to gain any more weight. I haven't really noticed any of the side effects but then, the last two times I've been on them I've had the opposite of most people. Where others have had endless energy I have been slammed with extra fatigue. As I recall it's usually a day or two after I finish that happens. Hoping maybe, just maybe I won't have that this time. I really can't afford to cause I can't take off any this week. The doc says about three days after I finish I should be feeling better. I have to admit I have noticed some improvement small as it may be.

I'm doing my best to dwell on the positive and not the negative. It's a matter of survival and that is what I intend to do--survive! Not sure when I'll have results from bloodwork or if the doc will have me in before May to go over that and possible changes in meds but I am ready whatever he should decide. This is a fight I continue to undertake! I will NOT give up!

...wonder if I can have tomorrow afternoon off??

Aeros Game Saturday night....too bad they lost.....





Saturday, February 27, 2010

Hockey tonight!



Havent't been to a hockey game in some time and looking forward to it! Go Aeros!!!

Friday, February 26, 2010

Here we go again....




16 pills a day for 5 days.......

Thursday, February 25, 2010

MS brain...



Okay so basically, this is what MS looks like in the brain. No this isn't my MRI....just one I found on the internet.

Obviously I survived my MRI. And now I'm just awaiting results from bloodwork--that was finally drawn and sent to the lab yesterday. The nurse tells me it could be a week or two before those results are available. Once those results are in I will possibly be seeing Dr. B to see what changes he may want to make.

Sunday, February 21, 2010

Small victories...

Maybe victory isn't the correct word but seeing my desk earlier today and the vision now yields two vastly different feelings. This morning the thought was I would never get all the crap off and now I can actually see the top! I have tons to shred and still a basket or two to sort through but I have made progress-even got some things filed. Granted I probably took a lot longer for the small amount of progress but I do feel that I have at least accomplished something. May try to do a few more things before focusing on other things. Hoping to slip in a little time playing with paper.

I honestly thought at one time that perhaps I should stay up as long as I possibly could tonight. My theory is that I would be soooo tired tomorrow afternoon I would drift off during the mri....because yes, I am feeling anxiety--probably doesn't help that in all the things I went through I found the report from my very first mri that suggests ms....

High Anxiety...



MRI scheduled for Monday afternoon....feeling the dread settling over me as I was told it would take 3 hours....hoping they'll not keep me in that thing for three hours straight....praying the valium is sufficient to calm me.......

Thursday, February 18, 2010

Number 33!!



What's so great about number 33? Number 33 is where I rank in regards to fundraising for the Houston area MS Walks! Thanks to my many friends I was able to collect $1379.53 toward the fight against MS. Eighty-three cents of every dollar raised goes directly to patient programs which means $1144.57 goes for research and helping ease the lives of those with MS with various programs and services.

When I began my fundraising I was hoping to collect $300...then I raised my goal to $500. Once $500 was attained I dared to dream and made the leap of setting my goal to $1000. Each time my many friends came to my aid and for that I am very appreciative. Thank you believing in this cause and supporting me.

The annual Walk will occur this November and once again I will be captaining the Merry Milers. I invite each of you to join me either by walking or donating or both. I will be starting this year with an individual goal of raising $1500.

Tuesday, February 16, 2010

Sunday, February 14, 2010

Photo-diary from Wednesday's neuro visit...







See post from 2/13/10 to see a pic of my neuro (from his website ).

Fun with inks...



Lately when I feel the need to make cards I have the urge to really play with the ink....and what a better way to start than by creating my own backgroud? I can get the color combinations I want and make my cards even more unique. Given the numbness in my hand it becomes more challenging at times but I don't let it slow me down. Last night I inked several backgrounds in various color combinations in preparation for cards. I really, really like this color combo--thinking I may need to incorporate this one into a scrap page!

Saturday, February 13, 2010

Wednesday's adventures....

As mentioned in a previous post, I saw my neuro Wednesday afternoon. I am fortunate to have been referred to someone I like. Dr. Brod in my opinion is not only thorough, he also genuinely cares about his patients. He doesn't rush...he answers questions...he explains...he considers the patient. He is concerned the betaseron might not be working effectively so now we investigate which means...more tests. Another MRI (it has been since May of 08) and some specialized bloodwork. Everyone knows how much I love MRIs-NOT.....so I have valium for that. Good thing because I've been told this one could take three hours. But it's MY MRI so it will probably be longer (my observation based on my previous experiences). I'm also waiting to be contacted by a home health agency to schedule the bloodwork--the test I need is specialized and only one lab in Texas does them--basically as I understand it, it checks for antibodies against the drug so Dr. Brod has something concrete to go on regarding effectiveness. At the end of it all I may end up with a new treatment protocol. Several options were mentioned, a few quickly dismissed. To summarize, Dr. Brod said whatever it may be will be customized just for me. Yep, I like him.



And Carol....I am now keeping a diary of my daily symptoms and such so I have the answers to the neuro's questions--I know, something I should have been doing all along.....

Wednesday, February 10, 2010

Long day....

Was out when I hit the pillow last night and managed to drag myself out of bed and was only a few minutes late for the office. Didn't accomplish as much as I would have liked to before heading off to neuro. Still 'digesting' appointment. Visited with friends at HCC then headed off to an MS meeting. Dragged in just before 10p. Not really up to a recap at the moment so I will call it a night and head to bed.

Tuesday, February 09, 2010

The latest....

Not really a whole lot of new to share....

The semester is in full swing and the craziness is at a managable level. Still lots to be done but at least it no longer requires 50/60+ hour workweeks. I can breathe, but just a bit. Still lots for me to do with different administrative duties.

Tomorrow is my six month visit with the neuro....Having mixed emotions about that one. This will be my first visit since my little steroid feast he ordered back in November--you 'member...the flare I was in and didn't realize I was in one. Amazing what an over $46,000 (yes, I said $46,000-$46,072.62 to be exact, but insurance negotiated it to $24,101.59) treatment was able to do.

So I'll see Dr. B tomorrow afternoon and share with him all my wonderful adventures...wobbling, stumbling, tingling, etc. Oh and the emotions....heaven help me the emotional rollercoaster can be trying. Thankfully this week things have been a bit more calm than in previous weeks. The downside is that he won't see the total basketcase I've been the past few weeks--I blame part of it on the stress. Most importantly I hope I remember to share with him all that I've been experiencing. I have a tendency to forget.

And on another note...MS Awareness Week is coming next month so you know I'm going to be harping on that! I'll share MS facts--maybe some personal experiences--but then if you know me you've probably already heard it or even lived it with me! And if you have a chance, check out the link to the MS 12x12 blog in my blog list. The blog belongs to Eric--whom I've not (yet) met--and he's vowed to donate his time each month to the MS cause through various volunteer opportunities...and whatever else he or the local MS offices can think up! I'm looking forward to following Eric's journey.

I had something else to add but darn, I've already forgotten what it was! So wish me luck with the neuro and I'll post an update after. Maybe I can find some pictures to go with it. Wonder if Dr. B would pose for me??

Tuesday, February 02, 2010

If only...

If only I had all the time and energy to do the numerous things that cross my mind during a day. For instance, tonight in additon to doing laundry and throwing something together for dinner I would be playing with paper and pictures. Instead, I am making a quick post before shoving towels in the dryer before heading to bed with some financial aid regs that need attention. I anticipate falling asleep before I manage to get everything read....

Monday, February 01, 2010

Sometimes...

...you just have to bite the bullet and give in. I m-a-d-e myself get out of bed this morning and in the shower. I m-a-d-e myself get dressed and go to the office. By about 8:30a or so I realized I could not make myself focus. Despite a relatively quiet weekend, my fatigue level was just too much. Everything was an effort. I do believe the last month has caught up with me.

After a brief discussion with bossman I gave in around 10:30a and came home. I was freezing...I felt awful and it was all I could do to make it up the stairs. I put on my jammies and crawled into bed. And I slept. I remember waking briefly and looking at the clock to find it was sometime after 2p and then I closed my eyes again. Sometime between 4 and 4:30p, the kitty crawled into bed and curled up beside me. I decided I might finally feel somewhat human and made my way to the recliner. Here just a little over an hour later I am still up--though starting to yawn.

There are a few things I need to accomplish--some laundry. I do believe it will be a rather early night so that I can try it all again tomorrow. Much to be done at the office and another busy week on the horizon--but there shouldn't be any 12 hour days.

Seems no matter how I try, I cannot learn to pace myself....