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!

Friday, August 20, 2010

Stress and it's Effects..........

Is it normal with CFS to somewhat lose your ability to deal with stress? I have always had some "anxiety" issues, but lately I just seem uncapable of handling it. There has been alot of "drama" at work this week, and I literally can feel it mentally and physically.

It's too much, I come home feeling beat up physically and emotionally. In fact, my husband actually thought I was feeling better on Tuesday evening when I came home, but it was just the high stress that looked like energy from the outside.

While, I realize this is another sign that it is time to step away for a bit, I just want to make sure that I'm also not going a bit crazy.

Thursday, August 19, 2010

Thanks and More Signs

Thanks so much for your comments and sharing your experiences related to my last post.

I do think "giving up" is the wrong term, I think my frustration and having to deal with my own feelings surrounding this led me that term initially but now I do know that it's not giving up, it's simply accepting the reality of the situation.

I do hope to be able to return to work, but don't know how or when and for the moment just have to take it day by day.

Meanwhile, on Tuesday at work I completely screwed up the billing, transposed multiple numbers, missed pieces that needed to be billed, it's the worst job I've ever done at it. My main supervisor literally has a million post it notes all over. I was honest and showed him how I had picked up incorrect numbers and transposed others, no use in hiding it any longer. This is not acceptable and just another sign.

I'm nervous but also somewhat at peace, it's an odd feeling, like I don't have to pretend any longer and worry that I'm going to get caught. I am doing the best I can for the moment and I realize I'm doing my job a disservice now as well.

Wednesday, August 18, 2010

Another View?

Lee Lee made an interesting comment on my post yesterday about driving. That if I feel like it's time to step away from work, then that has to be my decision. I guess this whole time, I have thought that a doctor would always have to say "you have no business working" or something equally as dramatic. But he's right (as usual), I am the only way in this body and I do feel like I am DONE. It's so hard to have to realize that, accept it, and now I also realize I need to communicate that more effecticely - especially to my doctor and husband.

I was woken this morning (on my day off / mid-week "break") by my "big" boss on my cell phone chanting off a zillion things - and my brain was literally screaming you can't do this anymore.

I went to bed last night, feeling a bit better and thought I would clean out the small fish tank today.....ha-ha - woke up by this phone call and immediately CFS was there mocking me, asking how silly could I have been for thinking I was going to get that done today, because it's BACK and only went away long enough to let me think I was going to take on a little project today.

We don't give up right? We are the exact type of people who would be the first ones back in the office after the flu, that the sniffles would have never kept away, heck at one point I was working and running a side business - give up? You have to be kidding. Suddenly, I realize that sometimes you just do have to give up and accept.

I feel like I'm giving up, thowing in the towel so to speak. However, it's different than I would have ever imagined. It's not a dread (because of a bad job situation), it's not the same at all, it's your body literally screaming and knowing if you continue to push it you are going to pay even more dearly, and lose even more than you already have.

So yeah, I think I'm done.

My own Mother had to point out to me how ridiculous it was to even think that I could get up an hour earlier - 4 days a week - to ride in with my son. That I was definately going above and beyond to try and continue working and I just had to stop fighting it. (Now, my husband is still another story but that will just have to sort out somehow).

My next appt. is Monday, I just have to find the strength to be able to say that out loud. I need a break, and my body has to dictate for how long. It's a hard fact to swallow.

Tuesday, August 17, 2010

To Drive or Not To Drive.............

So without disclosing TOO much personal info, my adult son works VERY close to where I do and has offered to let me carpool with him. However, he begins work an hour earlier and I absolutely could not EVER make him late. I did clear with the "big" boss about modifying my work schedule to match his but have not so far discussed with my immediate supervisors (where the most resistance will come from).

Last night, I was sure I was going to talk to them today and put it into action, but by this morning I'm so frustrated I want to cry and honestly don't know what to do.....why? I overslept this morning, it was almost impossible to get up when I did and I honestly can't imagine having to get up 4 days per week an hour earlier. I just don't know that I can do it. Plus, again a piece of my independence is leaving me...........I just don't know what to do.

Maybe I should just wait until this next doctor's appt. I have had several rather eye opening moments where I KNOW I shouldn't be driving in the mornings, this is why I'm so frustrated!

I am at a loss at the moment to be honest...............

Monday, August 16, 2010

Crashing and Riding the Ride

Well, I did in fact crash on Friday - hard. As soon as I got home (after leaving work 4 hours early), I hit the bed, which is exactly where my husband found me still at 7:30 p.m. I did nothing all weekend, and yes, foolishly am back at work today.

I'm confused by a phone call from my doc on Sunday. He has now decided to hold off on the neuro consult to see if the leg reflexes/weakness resolve within 2 weeks of my last exam. He also wants me try one more alerting agent (Rytalin sp?) - even though I've already tried Adderall (caused alarming anxiety), and Nuvagil (caused me to break out in a mysterious rash). The only good news out of the call is that he is going to let me try B-12 injections. I am scheduled to see him again next Monday and we go from there. I thought I was going for the neuro consult not ONLY for the leg issues, but to also document the IQ drop, speech difficulities, uncoordination etc for disability. He wanted me to bring my husband to this appointment - but of course he is too "busy" at work, so I will be bring my adult daughter instead.

The funniest part of the conversation is when he asked me what time would be best for me to come in because he is seriously concerned about my in the heck does he think I'm getting to work?!?

I just hope that we aren't moving backwards, I'm trying to have some faith that he is covering all bases, but I really think it's justified that I go for a neuro consult.

Oh, my Lyme screening was negative - no surprise to me, but closed that door with my husband which was good.

So, how am I supposed to get to work, if I can't drive. How am I supposed to stop working if we continue to wait and see?

Friday, August 13, 2010


Thank God it's Friday............I am at work (unfortunately), headed for a big time crash I'm afraid. I had to be here this morning because of a very important meeting - otherwise, even with my direct supervisor and office mate out - I would have called in. I'm getting out of here asap.

I thought I was fine at first this morning and then WHAM it hit! I have a screaming headache, and am barely able to stand upright. I WILL be headed home as soon as possible.

I hope everyone has a restful weekend, I know I will.

Thursday, August 12, 2010

Crash and Burn

I slept until 1pm yesterday.........and was barely functional the remainder of the day. The mid-week crash hit. I was hoping for a quiet day at work today, but no such luck so far. I'm already exhausted and have only been here about 2 hours. I have so much to get done at work, did not plan on having bosses in today, and am having a minor freak-out. It's so hard to shut up that type A personality, it's a constant battle still I'm afraid.

This is another reason why I know it's better for me (healthwise) to exit before much longer, I can't handle my own expectations.

I have not heard about the neuro consult, but am trying to sneak out of here today, long enough to go have the Lyme screening done. Perhaps, I can squeeze it in with some work-related errands. (Which will certainly not help with my fatigue level today I'm sure).

Tomorrow, is going to be another VERY busy day at work, so I'm trying to just remember to breathe and realize I can only do as much as I can do, so many hard lessons to learn.

I'm working through reading a book: "50 Things You Should Know About The Chronic Fatigue Syndrome" by Neenyah Ostrom. This book was printed in 1992. The saddest's the same information we have now. I'm dismayed. Is it really possible that we are no further than we were 18 years ago???

Tuesday, August 10, 2010

Taking It Moment by Moment

I did speak to my husband last night. I did tell him that my doctor said I was ALREADY disabled but I'm just pushing my body by working right now. I also told him that my doctor is concerned about me driving (due to the fact I often close my eyes at stoplights, am not as careful as I should be and often have great difficulity keeping my eyes open while driving). I rode to the gas station last night with my daughter and he made her drive (LOL).

He said we will work it out, and let's just see what the neuro consult he has all of the information, and I can tell it is hitting him now. I hope he will try to do some research or talk to someone, meanwhile I have made an appt. with my counselor (haven't seen her in probably 2 months) just to unload some of my fears etc.

I'm not ready to say that my husband is completely supportive at this point, but I've done what I can and I needed to know that.

I really appreciate everyone's comments, as Lee Lee mentioned, I would TRULY be lost in all of this if it weren't for all of you. (I have quite a bit of empathy for those that were diagnosed pre-internet). This is such a "lonely" disease already, to be able to find some understanding is a relief.

Don't get me wrong, I'm still nervous, I'm still worried, and I'm still hopeful that at some point I will be able to return to work. While it may be too late for me to come back to this job, I do believe deep down that means there may be something else out there for me.

I'm taking it moment by moment and just doing the best I can in the meanwhile.

Monday, August 9, 2010

Follow Up to Doc Appt.

I crashed big time this weekend, so I knew already my follow-up was not going to go well (or rather he would see a true picture). I am going for Lyme screening and he is setting me up with a neuro exam/consult. He wants me out of work SOON, and currently feels that I shouldn't be working more than 3 hours per day and that I shouldn't be driving at all. I am now down below 100 pounds as well.

He strongly believes I do have some brain "damage" / "issues" going on, and is surprised that they are already noticable to others.

I am regressing as he put it.

He is now indicating that I am already disabled and that WHEN I go out of work, it won't be so I can get better, it will be because I can't work, if I happen to get better that will be a bonus.

Sometimes reality sucks.

So, I will probably be out - shortly after my neuro appt. I truly don't know how much of this to share with my husband, he is not going to take it well.

Friday, August 6, 2010

Testing Advice.........

My appt. with my CFS specialist is Monday at 10am. I'm trying to determine what tests I should ask for to help along my disability case (private carrier right now).

Any suggestions would be greatly appreciated. I just don't know what would be best (Epstein-Barr for example or neuropysch exam etc.)

Thanks in advance for your wonderful expertise.

The Second Day is Always Harder

I remember a time when I could fly through a full week of work (45 hours min), come home on Friday and be ready to go OUT.

Now, it's Friday morning and I'm already ready to simply crawl back into the bed. Monday's at work are somewhat bearable, by Tuesday I'm a walking zombie. If I'm lucky enough to get Wednesday off, then I get a break if not by Wednesday I truly shouldn't even be driving due to the fatigue. I definately have a day off by Thursday, but then regardless every Friday is beyond difficult.

This week I had Wednesday off, so I'm on day #2 and let me tell you it seems like day #4. Late to work this morning, (don't even care, it's a wonder I made it in). Not sure how much I will actually accomplish, but I'm a somewhat warm body in a chair I suppose.

By the time I get home, I will crawl back into bed and wonder how I ever had the energy to go out on a Friday.

Thursday, August 5, 2010

Day Off and Doctor Follow Up

I am so grateful I had planned to take yesterday off. I absolutely did not hear my alarm clock and it was going off for well over an hour when my daughter woke me up. I managed to do nothing yesterday but watch some TV and nap. I'm taking it as easy as possible at work today, so far my knees and legs are not messing with me again. I know for sure now that there is a direct link with how worn out my body gets and the leg situation, but I definately don't want to reach that line where it doesn't get better.

I am going to see my CFS specialist for a follow-up on Monday. I'm still fearful of being told AGAIN I should take a break from work. Why does it have to be this way? I wouldn't hesistate at all (at this point) if I didn't have the concern about being paid by my STD coverage. Granted 60% pay isn't great but it's certainly better than none. The none is my biggest fear right now. Meanwhile, all my husband ever says is someone needs to test you for Lyme (not that he's heard that from enough people). I tried to explain to him that it's not really that simple (espcially if it's hidden and chronic) but he doesn't want to hear it. So I'm sure he will not be supportive of whatever the doctor suggests.

Somedays I tell myself I can push it a little longer, and then days like yesterday I wonder how I've made it this long. I constantly worry about the damage I'm doing to my body, but I also worry about how I'm going to pay the bills and how my husband is going to react (even though I've warned him multiple times).

Sometimes, I think it would be easier if I was alone.

Tuesday, August 3, 2010

My Legs Again.........

I'm off work tomorrow (thank goodness) and have placed a call into my CFS specialist. The leg and knee weakness is back this afternoon and is quite bad to be honest. I now realize how people have mobility issues with CFS. The symptom coming back so quickly is what forced me to break down and go ahead and call my doctor.

Oh, well that and literally running into a door frame at work today.

Yeah, I think I'm sliding downhill..............

My Schedule

So I made one mistake with this new schedule. Somehow (brain fog maybe) I didn't realize this means I have to work almost 9 hours on the days I'm here. Not smart - but it's done for now. I figure I won't be asking for much more, until I go out for a break anyway.

Have not called my specialist yet, he just got back in the country on Monday, so I'm trying to give him a few days to catch up. I will try to call him either tomorrow or Thursday. I'm a bit afraid to be honest, that he's going to sign me out immediately. Why can I just not accept it? Why do I continue to fight what I know my body needs? Why do I continue to deny what I know is going to happen? Why do I have to be so frigging AFRAID that my std carrier will deny my claim?

I know I need the rest, there is no doubt about that. What if I don't get better though? I know these are all questions we all have to face, I'm sure most of you went through this, and now on the other side are just shaking your head at me, telling me it's for the BEST. Trust me - I am listening.

Monday, August 2, 2010

Monday Always Rolls Back Around

I had a high IC pain weekend (nothing available to me could keep the pain even at a bearable level on Saturday) and then on Sunday the crazy leg stuff started again. It was a "horomone" weekend and I do know that for some reason the leg thing is worse during the "onset". My doctor keeps saying I have RLS - but I just don't know. Part of the problem is it's so hard to EXPLAIN. I don't have the urge to move my legs around, but the do appear to cramp up and I find myself stretching them out to try and help. It hurts to be honest, and it was difficult to walk at times. My legs were very shaky and my knees kept hyper-extending when I was walking. It is strange to say the least.

I saw pictures of myself from over Christmas and then one my daughter took the other day and the weight loss is SHOCKING. Seriously, my arms are 1/2 the size they were, and my entire body has changed. I have currently lost at least 20 pounds and it still seems to be coming off somehow. I told my daughter I need a before and after picture - unfortunately in this case, it was not weight that needed to be lost. (I'm about 5'3" and am weighing around 101 - 103 pounds currently.)

I demanded that my pay be cut back effective today to 34 hours per week (realistically what I'm still working even with 4 day weeks) so that I can stop burning up my paid leave - so I'm feeling a bit better about that, I don't think my husband is real happy about my decision but it's a minimal difference.

I had someone else ask me about Lyme disease over the weekend. No, I have not been tested. I have no idea to be honest, but realize it could be possible. (Even if all these specialists don't.) All I know is I'm SICK - and need a break.