Monday, November 15, 2010

Climbing out of the Bed

I can't believe how long it's been since I last posted. To be honest, I haven't even turned on the computer this entire time. To say I have crashed, would be an understatement, but I'm still keeping good spirits (most of the time), and still trying.

I have more bad days then good and good days do have an entire new meaning now, being bombarded with disability paperwork and mandated doc appts hasn't helped much either, but it's a fight that must be handled.

I don't read much any longer, books are impossible, but I have found some quite interesting shows on TV - LOL.

All of you are on my mind and I promise to post more as soon as possible.

I think it's important for anyone reading to see how far you can fall - especially when you don't listen to your body and STOP soon enough. You really have no idea, trust me, I never imagined that a bath would be a luxury, that getting dressed was a decision, and that the simple act of fixing a drink could take 30 minutes because you don't remember what you were doing or where anything is. This is not depression, this is a SERIOUS syndrome and eventually your body WILL demand what it needs - one way or the other.

Thursday, September 16, 2010

MRI Results, Rashes and Life

Wow that's a title right? Sorry, it's been awhile, but as you all know some days are just harder than others. I seem to be still progressively getting worse, and I haven't managed to take a break yet - between finishing up work and doctor appts. Each day it seems like less and less activity is too much.

My MRI results came in - abnormal of course? I have "at least 7 T2 hyperintense foci scattered and 1 juxtacorital lesion. Of course in English I have no idea that that means (insight is welcome - LOl) but I get that it's abnormal.

I have also developed a rash near the areas that I've been doing the B-12 injections. So until I hear back from my doctor I can't do anymore of those - while they weren't helping with fatigue much - they were helping with pain and I miss them.

I've been doing them for about 2 weeks - had no problem at all and then suddenly developed a quarter size rash on each leg in the area - in fact you could actually see several injection sites within the rash - odd. I wonder if it's because I'm doing them wrong or something (like too slow) - I have no idea - any ideas?

I hope everyone is doing as well as you can and hope to be online a bit more often soon.

Thursday, September 9, 2010

Change is in the Air

My last "official" day at work is 09/15, and then I'm officially on medical leave. A temp started today, in my chair, at my desk, doing my job and it's hard to accept.

I know this is the best thing for my health, I knew it was coming, but it's still stirring up alot of emotions. I wonder how many people think about how truly difficult it is for someone to just leave it behind and not know what the outcome will be?

In other news, no results back from my MRI, but I did horribly on the memory tests at the neuro/pysch testing. To be honest, I was surprised by how hard it was and how poorly I did, but hopefully it will help my disability claim. Again, another change or realization this week though, how much this has altered my brain is unbelievable.

I hope to be able to be back online a little more once work wraps up and I have time to recover from all of these appts. and stress.

((Hugs)) to everyone that took time to read my rambling post. LOL

Wednesday, September 1, 2010

So Tired..........

Sorry it's been awhile, daily life is taking too much energy right now. I'm still trying to work from home until the middle of September, at which point I will be going out on medical leave for a minimum of 3 months. It's been difficult. I'm making more and more mistakes (work related), my memory is shot, and by the time I deal with work emails, I can't even look at the computer any longer to update this blog or to read any of yours (sorry in advance). Hopefully, things will improve a bit once work is wrapped up.

I'm scheduled for an MRI (brain scan) the end of this week and going for the initial appt. with the neuro/pysch group next week, so at least those tests will be out of the way before I file for short term disability.

My emotions are all of the place, and I'm afraid it's going to take a bit for that to calm down as well. Exhaustion is almost a blessing sometimes, because if forces my brain to shut off. I've been having more headaches lately and I know that's due to my emotions and stress.

I bounce back and forth with my husband almost daily, I will think he is "on board", but then he will make statements if I say I'm worn out like "well, you were home all day", and it just sends all of those insecurities into overdrive. Yes, I've tried to explain to him, no he does not think he has said anything wrong, I am blowing it out of proportion and making it bigger than it is - apparently.

I actually do look sick at this point, but apparently not sick enough - I'm afraid. Maybe, I am too sensitive about being out of work, and people believing how truly sick I am, but then again maybe I have the right to feel that way right now. I don't know. I considered seeing my counselor but that requires asking for another ride from someone, so instead I just keep hoping for the best.

Sorry this is a bit of a downer of a post, but we all have those days, and I think it's important to not pretend you don't.

Wednesday, August 25, 2010

Waiting and Weight

Well I'm waiting this afternoon to hear from my "big" boss, concerning how long they will allow this work from home situation. The bosses were to discuss today. It's a bit unnerving to think that a meeting was held concerning you, but that's the way things go.

Honestly, I'm barely working a couple of hours a day and we all know it doesn't make financial sense to keep me on the payroll, I'm just waiting to hear the final word, and the later it gets the more my anxiety increases. I don't know why to be honest - it's a simple answer, I know what is best for the company and me, but to possibly hear it today.....well that's tough.

I mentioned my weight yesterday, well I'm officially down to 97 pounds. This is beyond not acceptable. My doctor said that my brain is misfiring signals to my stomach which is proof to him that there are central nerve system stuff involved. Great to know, but HOW do I at least maintain my weight? I had lost another 2 pounds in 2 weeks.

In other embarrassing stuff, once my husband read everything released yesterday, he asked if we needed to take "precautions".....not that particular area is of huge concern at the moment - if you know what I mean - but honestly, has anyone else thought of that or is the thought just that it may be transmittal by blood?

Geez....the stuff I'll put out there............

Tuesday, August 24, 2010


Just a quick note, to say that I was shocked and pleasantly surprised to see an article in our local paper today regarding the results released by the NIH. In my area this is nothing short of a miracle, so hopefully the word is getting out more than any of us think.

Change is in place............

I went to my specialist appt. yesterday and was informed:

1. I am NOT allowed to drive (agree but sad to have to lose that)

2. My work should being preparing for my departure onto long term disability (if available - which it is, if they approve the claim) or permanent disability.

3. For the time being I can only work from home, the hope is that this will allow my company time to redistribute my duties etc. (Not sure how this will work out, but I did pick up my laptop yesterday and am working from home the remainder of this week at least.)

4. If I think I can only go out on short term disability, I am in denial. (Anyone else waving from denial land???)

So yeah, things are changing. I told my work, for all the big bosses to get together and figure out what was best for them. I am happy to work from home as long as I can but with no additional salary decrease and with continued benefit eligibility, however, I don't realistically see how that is possible, because I am limited on what I can do from we will see what they decide.

I should have in my hands a letter from my doctor to the business owners by Wednesday or Thursday which will give me a better idea of how "stern" my doctor is being with them, and how quickly he feels this transition should take.

I am also being scheduled for a MRI and neuropysch evaluation in the very near future.

I did learn how to give myself the B-12 injections yesterday and did have a small boost in "feeling better" and thinking after about 6 hours for about 2 hours - so I will take that over nothing, maybe I can at least to pay my bills or something without messing that up. LOL.

So yes, change is in place. It's scary, it's uncertain, it is what it is.

My husband IS concerned now, and has gone from denial to overprotective. (I'm glad he's on board, just hoping he is still not in denial land and hoping I will get better soon.........)

We will discuss weight tomorrow ... eek!