Saturday, May 31, 2008

Weekend of possibilities....

It's nearing noon on Saturday and despite sleeping eleven hours (yes, eleven hours) I have already managed to load the dishwasher, do two loads of laundry and clean the cats' bathroom (they have the lower half of the bathroom linen closet for privacy). Of course I am now a bit tired--even after 11 hours of sleep. And still the vast majority of the day stretches before me-yeah. Now I am trying to decide how I want to use that time.

I'm feeling the pull to Hobby Lobby and Lowes. Why Lowes? I still want to pick up a couple more shelves but I just can't decide on where exactly I want to hang them. I can envision one somewhere in my spare bed/computer/scrap room with rows of jars (from HL) filled with colorful embellishments. But again, where?

I am also envisioning myself actually sitting down and working on a few pages/projects. One thing I definitely need to work on is organizing a circle journal among my new MS friends--since I've found three others that scrap! I admit to knowing little about how to actually do a circle journal swap but I know I'll figure it out! I forsee it being a good thing an it excites me!

I also want to give a shout out to Kip. Thanks for the comment and thanks for reading my blog! I love reading yours and am excited that you'd read mine. If you want to check out her blog and amazing work you can do it here.

Friday, May 30, 2008

Excited....excited....

In case you haven't heard, Tim Holtz is going to be teaching classes next Sunday at By Design. I had put my name on the list for the grunge board class but missed the payment deadline due to my medical drama---it was about the same time I was pushing to be referred to a neuro and then had the initial MRI scheduled, etc. I emailed to apologize for missing the deadline, explain why I missed it and ask if it were too late. Unfortunately the answer came back it was too late (the class had actually been overbooked). I completely understood and wrote it off. Figured it was just a sign.

This week I got an email indicating I was signed up for the class but had never paid and asking if I was still interested! So nowwwwwww, I will get to take the class next Sunday. I'm sure it's cheesy to some but I'm excited to be taking a class (that will be out of the norm) from Tim Holtz!! Kinda makes up for not being able to do CKU or Great American Scrapbook in Arlington and even with gas prices, I know it will be cheaper!!

Progress??

I called the doctor's office about 8:30a and the nurse actually answered. She confirmed she had my message and apologized for not having returned my call yet. The doctor has been out and won't return until Monday. She wasn't sure if she could consult with another doc or would have to wait for mine and I told her that I've hung on this long so I think I could handle it through the weekend. Since I have nothing planned other than rest I think I can manage.

She said she would email him today in case he should happen to check over the weekend and possibly respond to her so that she could call something in first thing Monday. I do know the fatigue has a fairly good hold on me today. I didn't get in till just after 9p last night and didn't get to bed till after 10p and I am feeling it today. This has taught me that at least for now, I have got to get no less than eight hours sleep--and currently more is better. Maybe, just maybe I will get something for fatigue and that will help me return to somewhat normal function.

Additionally she said she had faxed over the paperwork for my injection drugs and would check on that and get back with me. Silly me didn't even think to ask where it had been faxed---the drug company or the insurance. I'm hoping I'll hear something today at least from her to know where things are in the process. From MS chat I've found it took several weeks for others to get started. In the grand scope of it all I don't really feel I can complain considering how quickly (compared to others) I did get in to a specialist who ran the tests and immediately started some sort of treatment.

So now I have the rest of the weekend to do as I please. I think my first mission is a nap...or maybe wait for crowds at local eateries to die down to grab a bite to eat, then a nap! Other than that, I really really hope to get some scrapping done this weekend!

Thursday, May 29, 2008

You too can add music to your blog

Just go down to the player posted on my blog and click on Create Your Free Playlist.

You should then be redirected to the Project Playlist site. Sign up and begin building your play list. Once you've built your play list then click on add your playlist to my space or facebook (even though it's going on your blog).

Choose option E to get the code for any other social network, blog or your own personal website

Choose your play list (2) then get code (3)

At this point you will need two browsers open--1 with the project playlist site and 2 with your blog layout

Copy all the info from step 4 on the project play list site

Open a add a page element on your blog and click on HTML/Java Script Add to Blog and paste the info copied from the project play list

Save Changes

Once changes are saved you should be able to view your blog with your new music player

thanks to my new friend Nancy for telling me how to add music...you can view her blog by clicking on the last link under frequently visited websites

No return call

....still no response....

But on a positive note it will be Friday in just a few short hours! A PILE of work on my desk awaits but at 12:30p I am outta there! Thinking about going to see the new Sex in the City movie....depends on show times and how I feel at quitting time. May just go home and take a nap!!

I called....again

I have called the doctor's office and left another message. For some reason I felt funny doing so. Why is it so different now that it's me? If this had been a few years ago and I'd been calling on behalf of my mother I'd have called every day. But now....am I maybe still waiting for it all to sink in??

Tuesday, May 27, 2008

Two and one half more days...

Thank goodness for a short week. And actually I'll have another short one next week with the afternoon off on Wednesday and Thursday and Friday. I had initially planned to go to CKU and then thought maybe Great American Scrapbook in Arlington. With gas prices, all my pending medical bills and my new friend, I'm not going anywhere. At one time there was an option on the table for going to Austin and if it's still there I may go. Part of me wants to, part of me looks forward to just being able to do nothing.

Amazing how now the thought of doing absolutely nothing is appealing. Mom would probably laugh. Of course now I can totally understand a lot of things mom would say and a lot of the things she went through. Honestly thinking of her having her lung drained on a routine basis is what got me through my lumbar puncture. I figured if she could handle the needle in her back, so could I. The needle they used on her was a whole lot bigger and I know the procedure was sometimes painful. Mine was a piece of cake compared to what she endured.

I know I promised less posting about all my adventures but sometimes I just gotta go there. Things just seem to be moving slow now and it's frustrating. I left a message for the nurse this morning at the doctor's office and haven't heard back. I'm hoping maybe it's because my doc will be in the office tomorrow and she's waiting till then to call me back. I can hope. The fatigue could be worse, but it could be better too. And I'm anxious to find out about the drugs and get started on them. Add to that the stiffness that is still hanging around in addition to a few other things and I'm wondering if anything is happening right with my body. I wonder when this flare will end...and if I'll have another one anytime soon. Of course, if that should occur the doc will be more than happy to get me into a clinical trial! Maybe in some ways having another flare wouldn't be such a bad thing afterall...at least then all the meds and scans and such would be covered! Just looking for the bright side.

Ready for the Weekend

Is it wrong to be ready for the weekend when it's only Tuesday? That's how I feel at the moment and not because I have any sort of big plans. I'm ready for the weekend because all I can think of is having the entire weekend to do nothing but sleep. I'll be glad when this fatigue goes. I did call the doctor's office this morning and leave a message for the nurse hoping to find out something about the meds and something for fatigue. Just waiting for a return call....

Monday, May 26, 2008

Feeling Lost...

or maybe it's more just feeling like I'm out of it. I feel as though I'm living in some sort of fog and I begin to wonder if it will ever lift. Perhaps I can attribute it to the past month or so of my life. Perhaps I am in denial and should just face that it is due to the past month of my life. Doctor appointments, test, the hospital stay, the steroids. Trying to find a new normal within the confines of life as it originally existed. Wondering if the stiffness will every totally go away. And if it does wondering if I'll worry about it returning.

I think the outlet trip Saturday was a bit too much. I believe I overdid it. I've been fairly close to useless since that time. I made a quick run to HEB Sunday morning then spent the rest of the day lounging and napping. Mostly napping. Today I did manage to run to Richmond but had little stamina and did not stay out long. I felt overwhelmed when I walked in Penneys so did not spend much time there. A quick trip to Kohls to return something and then a stop at Target for a few items.

About all I accomplished after getting home was to vacuum the living room and get most of the mail off the dining table. At least I can see my table again. I've had big aspirations all weekend of working on pages, cards, a journal......I managed to throw together a few cards. Maybe, maybe...I can get something done this week. If not I guess there is always next weekend. Between gas prices and my new friend, staying home doesn't sound so bad.

Tomorrow I will call the doctor's office to find out about the drug injections since I've not heard anything. I will also see about getting something for fatigue.

Sunday, May 25, 2008

Fun with fatigue...

I guess I now know why often on the weekends I'd want and need to take a nap just a few hours after rolling out of bed. Seriously there were times I got up around 8 or 9 and by 10 or so I was taking a nap for several hours which bites because it eats up the day.

I've been up since about 8a today and here at just before 11a I'm thinking of taking a nap. At least in that time I have made a run to the grocery store--before everyone else--and put up the groceries. I've also actually loaded the dishwasher and started it, have a load of laundry in the dryer and one in the washer and have put away towels I washed the other night. Ohhh and I've printed the pictures I've taken over the last two weeks with great ambition of actually scrapping them sometime later today.

And someone examine my head (as though that's not occurred enough already) because despite outrageous gas prices and no real need to do so I keep thinking of a run in to shop. Mind you there's nothing I need and I did just get some new things yesterday. I'm fighting the desire to go to Archivers cause it's always fun to look at the eye candy. And I can have a late lunch/early dinner at Cracker Barrel while over there.

The other place I'm drawn to is Barnes and Noble. I love Banes and Noble and detest their move to First Colony because it's so difficult to find parking. (And I'm not in need of anything to read at the moment but I find the books comforting.) However now I might actually have fortune in parking since I am now considered permanently disabled and have the placcard declaring it. (Getting the placcard at the tax office is the first time anyone has made the statement to me that: you are permanently disabled and it seemed so foreign to hear...)

And even though walking has been somewhat of a challenge this weekend I have not used the priviledge as of yet. I figure if I'm gonna schlep around the various places I have so far, a few extra feet wouldn't be that much of a difference (of course I've also been able to park within a space or two of a handicapped spot). If I should venture out to Barnes and Noble I doubt I'd be that fortunate so I might invoke my priviledge. So many changes...

Thursday, May 22, 2008

Summer Hours....

It's the first week of summer hours which means I now have to be in the office at 7:30am. It also means tomorrow I get off at 12:30p!! Surprisingly I've made in the office on time this week and even more surprising I've managed to make it to Thursday evening though the fatigue is starting to catch up with me. I swear I have a date with my pillow tomorrow for 12:45p.

I've also held off calling the doc for something for the fatigue thinking I just need to get back into the swing of things and into some sort of routine. And of course if I'll start eating half way right I think that will help as well. So on the cusp of a holiday weekend I'm going to hold out a few more days and hope the delay doesn't do me in. At least by then I think I'll have a better grip on what's going on and if I really need something.

And call my crazy but currently I'm contemplating a shopping trip to the new outlest northwest of Houston on Saturday. Nothing too big. Just brunch and check out a few stores.

OOOOHHHH, and a fun new symptom I've experienced....l'hermittes. Go ahead, look it up. Basically when I move my head (bend my neck forward), I get a nice electrical shock type feeling down my arm. Freaky!!

Monday, May 19, 2008

Educational Information

In my investigation of what may come as time progresses I found a wonderful online support group for MS. When I've had a bad day or just need to find out if what I'm feeling is normal I can go to these people and get answers. Tonight when talking about feeling stiff and other symptoms someone suggested googling MS Spoon Theory as a way of learning and imparting to others what it's like.

While I've experienced many of the symptoms and have had some bad days I can say I am not at this point. And with the drugs maybe I'll never progress to this. Even so, I want to share the link so anyone who wants a bit of an inside look can get one.

Special note to Carol, this may be something Sarah can use to explain how she feels to others as well.

Spoon Theory http://sunshineandmoonlight.wordpress.com/2007/12/29/the-spoon-theory/

Sunday, May 18, 2008

Massage Envy is my new friend

I decided this morning I could use a massage. I booked an appointment at Massage Envy in Greatwood for 2pm and I am so glad I did. It was nice to relax and not think about a thing. And for the first time in days my stomach stopped bothering me. Not sure if there really is a correlation but in my mind there is and that's fine by me.

Since it was my first time I got an intro hour massage for $39. Tip and all it was $49 but it was the best $49 I've spent in a long time. I decided afterward to join. What that means is now I will pay $50 a month for a year for a one hour session. If for some reason I miss a month the session rolls to the next month. I can add additional massages for $39. Without joining a massage would be $65 so I figure $50 is a deal. And now I know I can get at least one massage a month. And I figure I'm worth it!

Who knows what all new adventures I'm in for with drug therapy and such. And after the loop I've been thrown for this past month it's only right to do this for me. Now to find some sort of normal.

S-l-o-w

That pretty much describes anything I try to do at the moment. It took a bit but I did get out for a while on Saturday. Had what I think was the best burger when I ran to Machs in Boling and picked it up. Upset stomach back this morning and out of pepcid.

I dragged myself out for a pedicure so at least my toes are pretty now even if the rest of me feels like crap. I went to Joey's for the card workshop and managed to make 10 out of the 12 cards with assistance on four of them--so frustrating. I found out what fatigue really is! Took a sleeping pill last night but don't really see that it's done me any good. I'll give it a few more days before calling the doc about something for the fatigue. I'm really trying to not be whiney.

I've taken my time getting up and around this morning. Trying to put away a few things, pick up around here, pay a few bills. I've decided I am getting out this afternoon for a bit. I've scheduled a massage for 2p at Massage Envy in Greatwood. Figured a little pampering might be a good thing considering all I've been through. Still trying to get in the frame of mind to return to work and life tomorrow. And still wondering if it'll ever be normal again.

Saturday, May 17, 2008

Determined...

I am determined to actually do something today. With luck...I'll manage a shower, get out and get some lunch and hopefully make it over to Joey's for a card workshop--hope she'll understand if I'm late!

Oh and some point I've got to get the trash out. Maybe if I will myself to have energy I will!

Wish me luck.

Thursday, May 15, 2008

Gotta Vent...

Isn't insurance fun?? In the midst of trying to basically get well I am now being told I should have never been seen by the doctor in Houston because I didn't have the proper referrals. WTF??? I tried to do everything the way I was supposed to and now I'm told that the proper referrals weren't in place and I should have never been seen, treated, etc. It's going to take all my time and energy to get this all sorted out and make certain my bills are covered. For years I've not been a drain on the health care system and now when I need it, it's failing me. UGH!!!

One Day At A Time....

For the first time in a week I got a decent night's sleep--of course the fact the doc gave me sleeping pills probably accounts for that. It's okay, I'll take it. I'm feeling stiff this morning but that could be from being in bed or it could be this crap. Hopefully once I get up and going a bit I'll loosen up--I certainly hope so. My goal is to get moving towards a normal routine sooner rather than later. I return to work on Monday and know what I'm facing there. I am determined to not let this slow me down any more than possible.

Meeting with my doctor and reading various things I have come to the conclusion that I have been very fortunate in the fact the doctors last week acted quickly. Heck my doc yesterday didn't realized I had been given test results and had already received the steroid treatment. He thought I'd gone home from the hospital on Friday and had just been waiting for the follow up yesterday for the results and subsequent treatment. Granted he was pleased to know I had already received five days of steroids. I guess with time they will kick in and I will return to some state of normalcy--I hope. At least that's what I've been told by more than one doc.

I was presented with two options from here forward. Wait for the steroids to take full effect and just return to life as normal and do nothing else for three months. At that time he would repeat the scan and hope there were no more lesions or episodes--what to me amounts to doing nothing. The other option is be aggressive and begin an injection therapy several times a week in the hopes it will prevent other episodes from ever occurring. I felt I've been through the sit and do nothing approach for so long that I am opting for the aggressive approach. Now I am just waiting to be contacted about the injection training and getting my meds, etc. From what I understand so far this particular drug program offers support 24/7/365 in the event I need something and that to me is another positive.

I'm still trying to wrap my head around all of this. And maybe that's because it's all so new. I think my mission at this point is to figure out how to best manage this for me. One thing I do not want is others dragged into my drama. I love the fact that everyone has been here for me and I really appreciate that. I also know everyone has their own life and issues. At the moment my thoughts are that I want to return to as normal as possible so my goal now is to try to focus on something other than my all consuming-what-the-hell-is-happening type posts. Let's see if I can lighten this up instead of always whining!!

It's time to get back to posting things like silly stories and strange pictures. And hopefully do some scrapping too!

Wednesday, May 14, 2008

Hit by a bus....

Did anyone get the license? I think that's a fairly accurate description of how I feel this morning. Thankfully I did get in a littel nap and now I need to get up and moving when I'd really rather be in bed.

Lucky me. I noticed a great deal of daylight pouring through the window in my scrap/computer/spare room. I walked in to find the curtain hanging askew with Sissy laying asleep on the pooled curtain on the floor. Guess I know what I'll be doing this evening! Aren't they fun.

The kitties have been sticking fairly close to me since I got home. One time this morning I woke to find them both in bed sleeping. I think they missed me!

The fun stuff...

looks like the first thing I'm finding is that I'm not sleeping. I'm not sure if it's from trying to adjust from lack of rest in the hospital or the lingering effects from the steroids. If I had to guess based on my conversation over the weekend with the attending physician I would have to attribute it to the steroids. I guess I'll find out more later this afternoon. Despite being exhausted I was awake at 1am, 2am, 3am and 4am at which time I got up. I'm sure I'll crater before long and I have a long morning and day ahead. With luck I can catch a quick nap here shortly before I have to get started.

Tuesday, May 13, 2008

MUCH LOVE TO EVERYONE

I'm tired so this will be short (more later, I promise) but I just have to express my gratitude for all the prayers, love and support the past week. It's yet to all sink in and I know I have long road and a lot of learning ahead. I am also very comforted by the wonderful, extraordinary, outstanding friends I have on the journey with me. Thank you all for being beside me during this time in my life.

M

Wednesday, May 07, 2008

Now the REAL Fun Begins...

So far I like the doc well enough. He explained what he was seeing--or in some cases, not seeing and said he really needs a new MRI. He apologized for that (like he had any control over it--I liked that). He said he needed the lumbar puncture (I figured getting out of it was too good to be true). He suggested getting me admitted to the hospital to do it all--if I was agreeable--and he was ready to do it right then. I agreed and he was ready to write the order and send me over this morning. I told him I needed to go home to take care of a few things--like getting a few things together for one. So tomorrow is the day.

He didn't really let on one way or another that I could tell if he does suspect MS. I guess from experience he's found it better to be that way. And I can understand that. I feel okay with it. I had pretty much resolved myself before ever getting to the appointment to the fact I'd probably have to have another MRI. I'm not thrilled with having to be in the hospital but I know it's best. And I know it's best it's at Hermann. Though I do have some mixed emotions about Hermann (I haven't been in that hospital since daddy died there in 1977....so not so good memories). But as Carol would say, it is what it is. And I will deal with it.

I'd be lying if I said I wasn't scared. I'm terrified. But not of being told it's MS. Terrified of having to go through the lumbar puncture because I've heard nothing good about them. But I'm a bit more comfortable with having it done as an admitted patient as opposed to out-patient. I keep telling myself by the weekend it will all be over and it should be. And I hope by then I have answers and not more questions---that concerns me too. I'm ready to get this chapter behind me and on with my life.

So, tomorrow morning by 11a I check into Hermann (not exactly the kind of vacation I wanted and not my idea of where I'd like to be checking in). I don't know when the fun will actually begin but hopefully it will only be a two day stay as the nurse stated. And I can say the nurse at Dr. Brod's office was wonderful (pronounced with a long o). So far I like his let's hit this thing head on and find out what we're dealing with attitude and he does appear to have a personality and not be all clinical and stoic which I feel is important too. I don't know how much I'll see of him while I'm actually in the hospital but I'm confident he'll be the one delivering any sort of news.

For now I need to try to get some rest. I'm physically and mentally worn out from today.

Tuesday, May 06, 2008

A Sad Night...

Just saw on the evening news that the Old Main Building at Our Lady of the Lake University in San Antonio has been destroyed by fire. The significance? Lake is where I did my undergraduate work. Granted it was in Houston but I still visited the historic campus. It is a sad night for students and alum everywhere.

Wish I Were There...



At the moment...

Physically I'm getting around better but do still have issues. Mentally, I could be better. I see the MS specialist tomorrow morning.

Sunday, May 04, 2008

I Should Have...

I should have done so many different things today other than what I did. Other than a quick run for cat food this morning I haven't done much of anything else today. I didn't even get in a nap that I thought about.

I guess I was a little productive. I think I have all my media cards loaded on the new computer--so now I have access to more pictures even though I haven't been able to get them loaded on picassa. I love how this new computer allows me to print in a 2x2 size so I can get about 20 pics to a page--sweet. I even managed to sit down and actually make a scrapbook page (see below). My hand is working....yeah.

I finished reading the book Last Lecture by Randy Pausch. Quick read, good little book. I don't know that I really gained any new insight from it. It did reaffirm many things I've known (but may not have always followed).

Willy's Sunday afternoon




Play...


I actually managed to sit down and do a page today...pictures of my mom....

Just because...


Saturday, May 03, 2008

Relief...

I cannot believe how almost totally different I feel this morning! The pressure and tightness sensation is still with me but they are so much less intense. I can almost walk at a normal gait--I even made it up and down the stairs to run out to grab some breakfast-I was actually hungry! While not totally back to normal the sensation is returning to my hand so things don't feel quite so foreign as they did. I'm experiencing more of the carpal tunnel sensation than the overall sleep/numb sensation. My first reaction is excitement and yet I'm almost afraid to be too excited that it'll all start all over. Perhaps, hopefully this episode is coming to an end. Who knows, I may never experience this again and that too would be fine. I still have several medical appointments and tests to endure in hopes of finding the cause of all this and the prevention of it happening again.

And I feel guilt. Guilt over getting everyone dragged into my drama and guilt that I was so needy. So in my healing I know too part of my job is to find the lesson(s) in all of this.

And again, to everyone who has been here for me with the prayers, love and well wishes.... a great big THANK YOU.

Friday, May 02, 2008

Tired...

...but a good tired. After a long day I drove in to have dinner with Robin. We dropped in at A Scrap Affair but didn't find anything we just had to have. We wandered around a bit trying to decide on something to eat and a place that wasn't packed and settled on Johnny Carinos--just love their roasted garlic potato soup. After that we decided on a stop at the Village before heading home. What a warm welcome from everyone. And we just couldn't help ourselves and had to get some of the cute new Little Yellow Bicycle girly papers (which is really funny considering neither of us ever really go for the girly stuff--but it was just too cute!) So now it's nearing midnight and I'm sitting here sipping Starbucks peppermint hot chocolate, listening to the Grand Jubilee from Branson Missouri online and doing a bit of surfing. (If I can't be in Branson listening to the Branson quartet of the year online is the next best thing!) This is the latest I've been up in about three weeks. Despite being a little more tired I'm starting to feel a bit more like myself. I'm able to type with few problems, my walking is improving and my right side is starting to feel more and more normal. I joked a few days ago that it would be interesting if I had none of my symptoms by the time I see the specialist and who knows, it might come true! And even if that should be the case, I know I still need to find out just what's been going on. Maybe I'll never have another flare up like this again....

Thursday, May 01, 2008

Gratitude

I'm so thankful tomorrow is Friday. Just eight more hours to put in at the office this week and then I can veg for a couple of days. Outside of rest I'm not sure what I may tackle this weekend. One thing for certain on the agenda is to get some rest. As of this minute, I am exhausted. I'd consider going to bed now but it's Ugly Betty night!

And the most important gratitude...for all of you who have called and emailed with your support during my current drama. I can't express how thankful I am for all of you and your love, support, prayers and well wishes. As you can imagine this point in time is both frustrating and frightening.

Now the positive. My 'symptoms' seem to be bit lighter today. The pressure feeling isn't as great as it has been. I can walk a bit easier and my speech is clearing. And though still a bit rough at times, I am able to write a little easier and it's a little more legible. Now, let's hope this doesn't all revert back overnight.