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!

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.

Friday, July 30, 2010

Another Day - Another Dollar..........

My "big" boss, wants me to go to ANOTHER doctor. One that for the life of me, I can not even figure out why because his speciality has nothing to do with anything I have going on. I'm putting it off for now, to be honest, I have to get out of this game. My plan is to wait until my CFS doc returns from vacation, follow-up with him, perhaps discuss a more complex neuro exam (due to the more recent issues I've been having) and let it go at that.

I'm burned out by doctor appts, I feel like I'm on a ride that I can't get off of, and I feel like I have crossed a line, in order to get my company to accomodate me, I'm done.

Back at work today, fortunately it's quiet because I'm truly only 1/2 here. I caught myself closing my eyes again this morning on the drive in, and my bladder has gone absolutely crazy so caffeine today is out of the question or I'll end up in some serious pain.

Moving along, I need some suggestions for things to keep me somewhat occupied when I'm down and out. I used to read, but can no longer concentrate and the words on the page give me a headache. I still do some fuzzy poster coloring but it's only every now and then because again it takes too much focus. I used to crochet a bit, but remember all of the steps is impossible. I am SICK of TV. So what do you do - when your resting, but not so out of it, that you would like to do something to entertain yourself?

Tuesday, July 27, 2010

CFS likes to Fool You

So my body said April Fool's again. You know those few minutes or even hours (last night in my case) where you think, wow, I actually feel a little well, not quite as tired, not quite as much pain, maybe just maybe and then...................HELLO it smacks you in the face to remind you it hasn't gone anywhere the next morning. You gotta love an illness with a sense of humor.

This is like a bad relationship, taking from you, pulling from you and then giving you "just enough" to hold on and have some hope - to yank it away again.

I should be used to it I suppose, IC acts in the same manner. However, it is different. The pain with IC is horrible, no doubt about it. But CFS (and maybe FM - I still can't truly tell what is what in my body yet) robs so much more. Your energy is so much more important to run your body then you ever could have known. You are reminded daily how hard it is to do something as easy as getting dressed. A shower? What a joke, that's reserved for days that you don't have much else to do at all. Waking up, who knew getting out of bed could require more energy then weeding a flower bed (not like I'm doing that anymore either - LOL).

I understand why it's so hard for our family and friends to understand, how could they? How can you possibly explain how much energy it takes to put on a bra (sorry guys), or to take a shower, or to fix a sandwich. There are no words. Even the "flu" speech doesn't accurately cover it.

In other news, I had a neighbor call yesterday and ask if I could have Lyme disease. I tried to explain that it had been mentioned quite often to me but never by a doctor and I honestly don't know why. Of course, I have mentioned and was told by the "infectious disease jerk" that I definately did not have Lyme. Basis for that definate opinion - no frigging clue.

Monday, July 26, 2010

Let's Discuss Relationships..........

As we all know, the divorce rate is quite high for couples facing chronic illness. I'm going to go out on a limb and guess that numbers probably even higher when faced with "hidden" chronic illnesses.

However, I also believe that some of those marriages (at least) had to have been a bit cracked previously, like mine.

I'm not sure if my relationship is changing or if I'm just noticing the cracks more. However, things are going downhill for me. I'm tired of being cut off and yelled at. I'm tired of being told I'm trying to start a fight, or he's ill because of x,y and z, and that I always have to take things so literally. I ask you, how else do you take something someone says to you? My husband is at least borderline emotionally abuse, this is not news to me, but is becoming more up front in my mind.

I had a bad weekend if you can't tell.

I am becoming resentful. Resentful, that I'm still carrying so much "weight" but everything I can't do is pointed out to me. Resentful, that other husbands find a way to take care of their spouse when they are sick (financially or otherwise). Resentful, by his actions and words.

So yeah, what's already cracked - is more easily to break. I think that's what happens.

Friday, July 23, 2010

IC - FM - CFS - Differences & Similarities

I know that many of us have other disorders and syndromes as well. I've had IC for at least 6 years (undiagnosed for the first 2), then came CFS, and now apparently FM.

With IC - it is very easy (in my case at least) for someone to tell when I am in "trouble". I can literally double over immediately if a flare hits (and they ALWAYS hit suddenly), sometimes I can barely walk, you can always read the pain in my face. Needless, to say when I have an IC attack, noone tries to tell me "you'll be ok, you can stay a little longer, if you would just drink a beer you would feel better, etc. etc. It is absolutely accepted that I must leave NOW.

My daughter has IC also (unfortunately) and her flares hit her the same way. Her boyfriend knows when she is curled up on the couch, with the heating pad pressed so hard against her stomach you would swear it was going to burn her - that they will not be going anywhere that evening (or day).

Now by no means am I saying that people that have IC - "have it better". Trust me, I would not wish the PAIN that comes with it (and trust me, there have been times I have seriously considered ripping my bladder out). Also, nothing beats having to run to the bathroom every 10 minutes either.

Now, BEFORE I was diagnosed, I met alot of stupid doctors that told me it was basically "in my head". However, my husband, family and friends all knew there was something REALLY wrong with me and my husband went to at least 20 appts. with me over those two years.

Then comes CFS........from the beginning, I have been met with skeptiscm (sp? LOL), from some family, all my friends, and my husband. Even after being diagnosed. You can not normally tell when I am suffering, unless I'm passed out cold - at which point it's just assumed I'm "tired" and need to rest. There is no empathy, no understanding, and constant comments like "of course, you can go to the cook-out - you have to eat anyway" or "leaving already? you've turned into such a party pooper" etc. Because they can't SEE it. It is rare that my husband even recognizes when I am about to literally fall out. He even laughed off my neuro symptoms yesterday when I was telling him what was going on and said I was blowing them out of proportion - after all, he says - he can't spell either. (OK, big difference between never being able to spell and suddenly being unable to spell - but regardless.)

Then comes FM...........this one may be even harder. Everyone's pain is more than yours, everyone has "neck" or "shoulder" or throw in whatever body area pain and they just "get through". The pain is annoying, can be bad, but because of my IC pain, I must be covering it up better at times (you all know the pretend I'm fine face.....) Regardless, absolutely no support at all. In fact, we (the friend group) used to hang around someone with FM and they would constantly make fun of her behind her back............needless to say I have not even told any "friends" about this diagnosis.

So yes, technically they are all "hidden" illnesses. They all cause pain (different kinds, but it's still PAIN), they all cause sleep deprivation, they all create difficulties in your life. But in my experience - CFS and FM have been my turning point of being put into a different place in people's minds.........and I wish there was a way to change that.

Thursday, July 22, 2010

What a Difference............

I can definately tell some difference between the days I work and don't. Sure the fatigue is the same, but what is interesting is most of pain in my back, neck, and shoulders is greatly diminished. Certainly shows that sitting in one position for too long and not taking breaks (and even naps) certainly makes a difference.

I am seriously wondering now if the Fibro is a secondary issue due to my continuing to push through at work and home and ignoring early warning signs.

I want to continue to work (for income and I have worked hard to gain the respect I have at work and the place I am in now), however, I can't short-change my health. I'm still trying to find a balance but I can't find it. If I reduce my hours much more, I will not be eligible for insurance and would make more on short term/long term and be eligible for insurance (paid) for 3 months. When does it begin to not make sense?

Tuesday, July 20, 2010

Work and Health - Where is the Boundary

My "big" boss, asked me how my appt. went with the doctor he referred me to (the wonderful infectious disease specialist LOL). I hesistated in telling him, but finally sent him an honest email last night stating my concerns - especially regarding the "mental type questions", and that I was unsure at this point regarding his recommendations. He replied that we would "talk" this week.

Where is the boundary here? I have always thought that open and honest was the best approach, and that you are more likely to obtain accomodations if you follow that guideline (it's the HR person in me), but now I'm unsure.

I feel as if somehow this is getting out of control and not sure how to handle it. So in your past experiences would you feel that I have already crossed the boundary?

In other news, I stated I am taking Wednesday off, period. I am close to another crash (all the signs for me are showing up - feeling like I'm getting a "cold", sore throat is bad, cough is bad, all the first signs for me that the Big one is about to hit).

Monday, July 19, 2010

Weather Changes

It's been stormy here all weekend, and it's KILLING my joints. (Is this normal?) Add to that this morning it must be especially bad because the ankle I had surgery on 8 years ago - I can barely walk on (I do have pins etc.). This does not make for a good Monday.

I have no idea how the rest of the week is going to go as far as work is concerned. We AGAIN have a busy week, but somehow I'm going to have to put my foot down and take my time off. My direct supervisor suggested I take 2 1/2 days instead (leave in the afternoon) - which I suppose is better than nothing, but it's the mornings that are the hardest and I have come to depend on that one morning during the week where I can sleep in and move as slow as my body demands.

I made it out of the house two times this weekend - both times for quick lunches with different family members, and attempted to do some light housework, by Saturday evening I was in unbelievable pain and it's the first time I've ever honestly thought - I really wish I had something stronger for pain and I if I did I would just suck up the nausea.

Friday, July 16, 2010

CFS Takes Our Brains As Well...........

I'm sure most of you will be nodding your heads in understanding, but as a newbie, I am SHOCKED by how much CFS/ME (and or the Fibro) have stolen from my brain.

I used to be the person everyone came to about spelling questions, now I constantly find myself searching for other words to use because I can't spell the word that first comes to my mind.

I am a bookkeeper by profession (along with alot of other job duties I got tagged with quite awhile ago in this job), now I have to be extra careful not to transpose numbers, and have difficulity reading reports.

I constantly find myself transposing words (that's fun - LOL), walking into rooms and having no clue why I am there (what a waste of energy), and losing my train of thought.

I am well known in my job for my memory. My bosses have always depended on it greatly. Yesterday I forgot mid-sentence in front of my big boss what I was going to ask him, and he noticed. (EEK, not good).

If anyone out there reading thinks that CFS (or any invisible illness) is all in our heads, you are partially correct. It's not ALL in our heads, but it certainly does affect our brains.

Thursday, July 15, 2010

Now I Know for Sure My Husband's Fears

Well, as wonderful as yesterday and this entire week has been, I guess it's the perfect time to get everything out in the open (I say with much sarcism - did I spell that right? LOL).

My husband is afraid I'm going to have to stop working - period. I spoke to a family member of his last night and the ONLY thing he has expressed to anyone in his family is that he's afraid I'm not going to be able to continue to work. Nothing about how sick I am, nothing about fears for my health, nothing about my inability to socialize anymore, all he continues to mention to them is that he's scared I'm not going to be able to work. So that's where we stand........

I'm still angry from yesterday also (which isn't helping my mood I'm sure) - but was told AGAIN last night that I NEVER look at the bright side. Quote "they make medical advances every day - you have to look at the good in everything". GIVE ME A BREAK........if he had 2 chronic pain disorders, and CFS - would HE see the bright side? Yeah, I'm not thinking so either. The funny part to me is that my CFS specialist says I have a good attitude about this (considering) - mainly because I'm so accepting, so sorry I can't see the "sunshine" right now for my husband's sake.

Sorry for the mood - but it's just been too much this week (including work) and I'm fed up across the board. Hopefully, I will feel (mentally at least) better soon. I don't feel well (understatement) and exhausted (again understatement) and it takes too much energy (physical and mental) to just "keep it moving".

Wednesday, July 14, 2010

The Infectious Disease Doctor Says............

I have Fibro. He does not "believe" in CFS and thinks it's actually Fibro and (wait for it) I should go into an exercise protocal immediately - including (your never gonna' believe it) obtaining a PERSONAL TRAINER.

He is sending notes to my primary care doctor and my CFS specialist stating this. I already have a call into my CFS specialist about this and am sure he will disagree (and note in his records) - but this is still going to be in my frigging medical records.

I am furious to be honest. I feel that I was manipulated into this appointment, and I fear at some point down the road it will be used against me.

I am so grateful for the internet and all of you - because otherwise, I would have listened to this idiot and probably be either bedridden or in the hospital. (Not to say that can't happen anyway - but I certainly don't need to push it.)

No Day Off This Week

So I am AGAIN being not accomodated at work. I was informed yesterday that due to deadlines and meetings scheduled this week that I will have to come in all five days. I was able to get them to agree to let me come in about 30 minutes later or leave a bit early (if possible).

My supervisor (not the "big" boss) - made the comment that I should be fine, since I was granted additional days off a couple of weeks ago!!! As we all know, this is just a sign - one that I don't want to see but I am being forced to.

I will be glad when my CFS doctor returns at the end of this month. Meanwhile, I'm waiting to hear the results from the infectious disease guy today.

Hope everyone is feeling as well as possible.

Tuesday, July 13, 2010

Late Start but at Least I'm Moving

This morning was ROUGH (you all know what I mean) - somehow I only ended up being 15 minutes late to work - so I consider that a victory.

My "big" boss still does not think it's possible I have CFS or Fibro - because I'm such a hard worker and so motivated. Anyone else laughing out there in blogsphere?

I believe we were all hard working, highly motivated, and probably juggled far too many balls before illness hit. That's why I get so frustrated when someone makes off-handed comments without knowledge. Don't judge me because I'm ill, how about you take some time to do some RESEARCH. Most of us have had to completely change our lives around, some have lost wonderful (high paying) careers, some have lost spouses or significant others, some have even lost all their possessions. We try everything we can to get better: medications, expensive supplements, alternative therapies, what more does the general population expect?

Speaking of research - I have tried to stay out of the whole XMVR virus talk because I truly don't know enough about it to form an opinion. But can someone tell me WHY the results are not being published? How can science move ahead when study results are being kept away? I don't know if it's XMVR or something else, but I believe that every single ounce of research available (since we all know there is so little) should be available. Maybe then, people (like my boss - who is a retired MD by the way) would recognize that this is real - and happens to people "like me" every day.

Monday, July 12, 2010

Moving Along

Thanks for all of your comments regarding my last "doc" appt. It helps to know that most people have run into this at one point or the other. I experienced alot of this type of treatment when I was trying to find the cause of my chronic pelvic pain years ago - until finally getting the diagnosis of IC. I'll never forget the FEMALE ob/gyn doc who patted me on my knee and said "honey, some women just hurt more than others"...........yeah I have stopped myself many times from showing back up in her office with pictures of my bleeding bladder.

I've been fortunate so far down this path, and haven't experienced that so I was a bit taken aback by an infectious disease specialist treating me that way, but lesson learned.

My regular doctor returns at the end of the month and we will be discussing the work situation further. I'm feeling a bit lead around at the moment. I am having accomodations denied (like officially reducing my hours so I can stop burning up my paid time off), like being sent to see this doctor and given 4 days off when I informed them either I had to work mostly from home or take some EXTENDED time off, and being given different answers all the time about if it's possible to do my job from home.

So I'm going to take the Fibro diagnosis also, (it is possible - since my pain levels and fatigue levels are close to each other - although the fatigue is always just a bit higher), what's one more diagnosis that half the world doesn't believe in right? So this gives me a grand total of 3.......goody goody.

My husband is hoping that something is going to come back with my thyroid (because that's fixable and all) - he is still telling me that I refuse to be optomistic. AGAIN I'm just being realistic - but he can keep hoping all he wants.

Friday, July 9, 2010

I Wasted My Day for THAT?

So, I went to see the infectious disease specialist. I want you to know that he is supposedly the "best" and is linked with a well known hospital and university system in the US. His name would be highly recognizable.

The appt. started out with questions like:
1. Are you happy in your job?
2. Are you having any marriage problems?
3. Do you feel better on the weekends than you do during the week?
4. Have you ever been treated for depression?

Yeah, I knew this was going NOWHERE at that point. He did examine me and says that I meet the CDC criteria for BOTH CFS and FMS (well that's great). He is running some more detailed thyroid tests, some regular bloodwork, and a Hep C panel (since I have tattoos). Guess what this wonderful infectious disease specialist did not ask about? ANY environmental questions etc., no exposure type questions, and the kicker of it all........guess what he did NOT test for...........Lyme or any tick-borne illnesses.

Oh and he also says I need exercise, because you know even the best athelete will be sick and unwell if he hasn't exercised in months.

Yeah, so that didn't go so well, and I'm frustrated and discouraged - AGAIN.

(I don't even want his notes in my medical record - Ugghhh!!!!)

Thursday, July 8, 2010

What a Week

I haven't been to work yet, and plan to return tomorrow. I did rest all weekend (thank goodness) because the week so far has hit me hard. Between the road trip to the doctor on Tuesday and some other family "stuff" that came up that required even more road trips and stress I haven't gotten much rest this week.

I go today to see the infectious disease specialist - and am not really sure how I feel about that..... a bit anxious I suppose. You know that fear that AGAIN nothing will be found and you will not be believed........hopefully it will go better than I think, Certainly a world renowned infectious disease specialist would be aware and supportive of CFS right? (yes, I can hear you all laughing).

I'm also stressed about work, remember I just took almost an entire week off 2 weeks ago also, I am truly going to run out of available paid time. My supervisor refused my request to reduce my hours officially - stating that I had "plenty" of time off - well, not the case after this week. This is exactly what I was worried about!

Thanks for all the comments, I hope everyone is doing as well as you can - and hopefully will be able to come back and tell you the appt. went better than my stupid brain thinks it will (smile).

Friday, July 2, 2010

The Best Thing About Friday

The best thing about Friday is I get to rest all weekend long. Ahh, the life of the chronically ill. It's funny how months ago, I would be planning on dinners out, cook-outs, possibly throwing back a few drinks, dancing with friends etc. with the weekend approaching. (Especially with this being a holiday weekend.) Now, I look forward to curling up on the couch, under my comfy blanket and seeing what the DVR has recently recorded.

I have a busy week next week, so I will definately be taking advantage of the long weekend with plenty of rest.

Good parts about next week - I only have to work 2 days.

Bad parts about next week - I will drive 2 hours one way on Tuesday to see my urologist. I will drive 1 hour one way on Thursday to see the infectious disease specialist.

Again, another sign of the life of the chronically ill. :-)

Honestly, my mood and outlook has improved and I'm thrilled by that. I think I'm in the acceptance mode currently. I'm adjusting my life, accepting my current limitations and acknowledging future limitations. I'm trying harder to not feel guilty over things that I feel I must do, and instead focusing on what I can do.

I have to thank everyone again for all of your comments throughout the beginning, I do believe they have helped me adjust and accept.

Life is going to change, but maybe it needed to anyway. It's funny how sometimes it takes something like this to make you realize that.

I hope everyone has a safe and restful weekend.

Wednesday, June 30, 2010

Sometimes Your Just to Tired to Care

I'm sure everyone has been there, the point where your brain just shuts down and stops caring as much. I find it almost peaceful to be honest. I am exhausted, at work and just truly care about 1/2 as much as before. I also suspect that there is some background conversations going on about me at work - but am choosing to ignore and just don't care (trust me this place is full of tongue waggers so it doesn't surprise me, previously I would have been really bothered by it being directed at me). I'm letting my husband deal with this now how he has too, letting him believe what he wants to, and don't have the energy to fight about anything anymore.

Don't mistake this for being a push-over, it's much different. I will stand up for myself if necessary, I'm just mentally in a better space where everything just doesn't bother me as much.

So the one advantage to CFS that I have, the nice exhausted buffer it puts around your brain :-)

Tuesday, June 29, 2010

Can't Keep My Eyes Open

Wow, today is rough, I caught myself barely able to keep my eyes open on the drive in (BAD - I know).

Thanks for all your comments, as always they mean so much to me.

I do think it's obvious I have CFS, but seeing this infectious disease control doc will accomplish several things (1) make my boss happy, (2) make sure nothing else is going on (3) make sure nothing else is complicating my CFS.

However, I have to admit that I feel a bit lead around at the moment. It seems that now I'm pushing myself because my boss is being so nice and getting me in to see another doctor and because he gave me last week off. I asked my immediate supervisor yesterday (not the same boss) - to reduce my pay to what I'm actually working so that I can stop burning up all my vacation and sick time to make up my hours and was told "that's not necessary at this point". I tried to explain that I am very afraid that I won't have any "time" left if I need an extended break or even if I just crash and need a week off again - apparently it's "still not necessary at this point".

My husband is flying high on the thought that this new doctor is going to find out what is going on with me and be able to "fix" me - this all feels like unfortunately a recipe for disaster.

All I know is that I can't do this much longer and we all know it (at least all of us here - LOL), I can't keep pushing, I need to stop.

I'm taking it one day at a time, hopefully with my eyes open at least some of the time.

Monday, June 28, 2010

Alot to Catch Up On

On Monday afternoon my "big" boss sent me home for the rest of the week. I literally spent the entire time (Tues - Sun) doing extremely minimal activity and mainly rotating between the couch and the bed. I do not feel better.

I am back at work today, but not sure how it's going to go. I agree that at this point I should probably just go out of work and forget about working from home but I am trying to work with my employer also. I worked from home 1/2 a day on Tuesday and it was horrible - not restful at all - and a mistake.

My "big" boss (not my immediate supervisor) is a retired physician from a major university hospital. He is arranging for me to see an infectious disease specialist to "make sure" there is nothing else going on.

I don't think he believes in CFS to be honest, but he can see that I am obviously sick. Either this will be a life learning experience for him, or they will find something else wrong.

Meanwhile, I feel like I should try to to work with them as much as possible - although, I realize that this was not what I asked for in my message to him, but I'm taking a wait and see approach - FOR THE MOMENT.

I'm discouraged that I feel no better after resting all last week, if I'm 100% honest, I'm still getting worse. I am actually quite sick at this point. The realization of this is really hard to ignore.

My current doc is now out of the country (in the UK) for an entire month, so I'm a bit "stuck" anyway I suppose.............

I just wish I would stabilize at least............

Monday, June 21, 2010

Then Things Got Worse

Well, the motorcycle has been put off for awhile I think - however, the conversation opened Pandora's Box and I am feeling beyond defeated, exasperated, and lost.

My husband wants to know what my "plan" is. He wants to know if I take this month off, and then go back to work after and the same thing happens and I just going to "give up" or am I going to try to "push through". He asked if I was "throwing in the towel". He says he has a right to know "what he is looking at", is it a month, 6 months a year - or what. He doesn't want to hear that I have no way of knowing, he doesn't want to hear assume for the worst and hope for the best, he doesn't want to see my tears. He also, doesn't see what the point is in going in to see my doctor with me, when he's only going to say that he can't say how long I will need either.

As you can imagine, I am hurt (and of course he says I take everything too "literal"). How would you take it if your "partner", the one that is supposed to "stand by you", asked if you were giving up, throwing in the towel, or were going to push through. I tried to explain that I don't have "choices" - he simply doesn't get it and I don't think he wants too.

I'm angry also, I supported us when he was in a car wreck way back when our children were small, he was out of work for 3 months, I figured it out, told him not to worry, and we never knew in advance how long he would be out. Or how about that time he lost his job (by his fault) two months before Christmas one year and couldn't find another job until January? Yep, same thing, we would figure it out, he was told not to worry, and not only did I figure out how to pay the bills, but also how to provide Christmas for our children. I apparently do not get the same.

This morning, he called me to tell me it was "time to get up and join the world again". You can imagine how that made me feel as well.

I'm tired, I'm stressed, I feel like total crap, I am alone, I feel that it would be "easier" if I was doing this on my own. I can't take it any longer.

So my "plan" (per him I guess or at my moment of defeat one) is to ask my big boss about working from home and if he doesn't say yes then we go from there.

I don't know if I should still try for the doc appt. - I feel that it's only wasting my doctor's time, my money, and that perhaps we could use that time instead to fill out forms (since I doubt highly I am going to be able to work from home - I've already been told no - once).

Correct me if you think I'm wrong.

Meanwhile, not a great way to recoup from one week and prepare for the rest. I wasn't depressed before, but I certainly am now.

Friday, June 18, 2010

Warning - Gripe Session

I seriously wonder what planet I live on somedays. Today is obviously one of them. My husband has just informed me he wants to buy a used motorcycle - at first I thought it was a joke. Once I realized it wasn't, I told him to do what he felt was best. Now, he wants to know why I have an attitude!!!!! I'm not his mother, and I'm not going to tell him no (nor should I have to). I am beyond fed up at the moment.

My CFS specialist is concerned about my swollen lymph nodes and has now offered to make an appt. over the weekend to accomodate my husband because he feels that I may be delaying taking time off due to lack of support. How ironic that all of this happened on the same day.

I am beyond fed up at this point. It's one thing to continue to work to pay the current bills - it's another to think it's ok to add more unneeded bills to the pile. Unthoughtful is an understatement - selfish is more appropriate.

Thursday, June 17, 2010

Support Means So Much

Thank you everyone for all of your comments and support. Truly it is a breathe of fresh air to communicate with people that get it and I can tell in your messages that you truly care and are trying to help me from falling far - it really means so much more than you know.

I also, got a pleasant surprise from my uncle who is apparently very knowledgeable about CFS/ME so it's been nice to have an additional family member "get it".

I went to bed at 8pm last night - and slept for 12 hours - it seems like I could sleep for weeks right now to be honest. I'm at work today - but came in late (had to get more bloodwork drawn) and am not staying all day. I'm going to tell them effective Monday to start paying me hourly and stop burning up all of my paid time off trying to make up my hours. Step #1 in my eyes. I am definately being more realistic now after this last "episode" that has now lasted several weeks and appears to still be getting worse (but I'm surviving at least).

For the most part my family has been understanding about no commitments - my daughter was a bit disappointed about something she wanted to do this weekend but quickly realized how it was out of my hands (have I mentioned lately how grateful I am for my adult children and their support and understanding), my mom has been wonderful about it and is totally supporting my decisions (she would also like to see me take time off work), but there are still some in my family that just don't get it and I'm accepting that they just may not get it. This is the first time, I can truly say I feel like I'm putting myself first.

It's still difficult with my husband - but I can't change him or the situation - so my newest goal is to stop apologizing and making excuses for what I can't do - it's ridiculous and I know it.

Wednesday, June 16, 2010

One day at a time

I only know for the moment I have to take this one day at a time. I left early on Monday and took yesterday off (called in sick). I literally stayed in bed all day yesterday and slept a TOTAL of 14 hours.

I am back at work today - but taking it VERY easy and am not making any promises regarding tomorrow.

I have put the word out to the company that helps us manage our employee benefits (it helps when you are the plan administrator and have a bit of an "in") to see if they can find out what U*N*U*M would be looking for to process a claim. (Again, any and all personal experiences are still welcome.)

My husband still wants me to find out for sure, if I can work from home instead of going out. I still have not been able to discuss this with my "big" boss and to be honest am not sure that this is the "break" my doctor has indicated that I need. I'm just not sure if I should pursue that avenue or not at this point. It would be ideal (I believe) to take a month off - and then if that has helped ANY to try to slide back into work by working from home but feel that may be asking for too much in my employment environment. With the exception of my "big" boss - the mentality around here is that once you go out on medical leave you already have one foot out the door. Also, in other cases - they would not accept employees returning back to work if they could not do the job as they had before.

One day at a time, it may not be the healthiest answer for the moment but it's better than continuing to simply push myself along I suppose.

I'm also not accepting or committing to ANY outside work activities - not for family and not for friends.

Monday, June 14, 2010

Going Over the Edge

I can feel it, I know it's there, I know it's just around the corner.

I'm going over the edge.

I feel almost desperate. Desperate to speak with the "big" boss so I can know if working from home is an option. Desperately thinking that may not be enough. Desperate to find out anything I can about my chances of getting short term disability. Desperately thinking it may turn into longer.

I am beyond exhausted, I am not well at all, sometimes I feel as if I'm dying (no I'm not suicidal - no worries there). Each moment is harder than the last.

I can't do this much longer, my bed is calling me, my body is yelling at me, my time is coming.

I am definately going over the edge.

Monday Again

This weekend was horrible. I have dragged back in to work today (I know.......I know.........). The heat index here is horrible right now and I passed out from it on Saturday. I had only gone outside very briefly and the last thing I remember was my daughter telling me I looked really white. Next thing I know I'm in the bed. My daughter wanted to call an ambulance but I refused (just more bills, for them to tell me to stay out of the heat was my theory).

I look horrid today, pale, my throat is hoarse, my cough is bad and I'm barely functional. This is a day where I am counted for being present but not sure how much productivity I will be able to accomplish.

I have decided to try to talk to my "big" boss about the possibility of working from home some (as in - working from home / more than in the office). My immediate supervisor had said it was not an option but I'm going over his head to see if I can change that. I'm going to have to be honest and tell him that this is the only way I can continue to work right now and hope for the best. Now, I just have to nail him down.

I would still appreciate any guidance for private disability insurance - I'm not sure that this option is going to work (for me or the company).

Also, thanks so much for all of the visitors and comments so far - I truly appreciate you sharing with me.

Friday, June 11, 2010

Update on Work & Health Situation

FOR NOW, I'm still at work - but the days are counting down. My doctor wants me to take at least one month off to rest and "treat by body as if I had mono". He has informed me that FOR NOW he is leaving the decision up to me, but if I decline much further he will have to insist.

When I went to the doctor on Wednesday, I was running a low grade fever, had VERY swollen and tender lymph nodes and am now down to 103 pounds. As a reminder I weighed about 122 in January but even more alarming is that I weighed 119 March 1.
I am wearing down - my body is not handling this well at all (which everyone I know is shaking their head in understanding).

I took yesterday off and can't even tell, I had to get a ride into work today because I was afraid to drive and doubt I will be here all day.

Still alot of family misunderstanding going on right now. My husband is slowly understanding but still believes if I put on weight I would be better. I am seeing a nutrionist soon but tried to tell him that is a concern but not a "cure". (My doctor also told me that if I get below 100 pounds I'm risking being hospitalized for my weight). There is concern all around about the financial impact of this and I am concerned about if I can't return to work after one month (which we all know is a possibility).

I know the right thing is to take off work and put my health first. I'm a planner (which I'm sure is known by now), and this is not settling well in my mind at all.

My "fabulous" insurance company is well known for delaying and refusing claims for CFS - since it's considered a "self-reporting syndrome" and I'm afraid. I will HAVE to have that income or things will be going badly fast at home. Which is why I am asking for advice because I truly don't know what will test etc could "help" my case.

My doctor told me to call him WHEN (not if) I am ready and he is happy to help me with all the paperwork.

I had a dream the other night that I couldn't get out of bed and my husband was trying to get me to go to the hospital - I'm afraid it's a sign.

Wednesday, June 9, 2010

Experience with Private Disability Coverage

For anyone reading in the US, do you have any experience or advice for proving a claim for CFS under private disability coverage for short term disability coverage (at least for the moment)? Specifically, unfortunately we are covered under the famous company u*n*u*m.

My doctor is very willing to assist with all paperwork and forms, I do have swollen lymph nodes (especially right now), but don't really have any other "markers" - at least that I'm aware of (which granted is limited knowledge).

I guess everyone can tell how my doc appointment went............I will follow up more tomorrow. Right now, I can't get past the anxiety that I might get denied.

Alot On My Mind

I have quite alot on my mind right now (as I'm sure you can imagine). I am seriously thinking about the job situation and still have some unresolved issues at home. Hopefully, one part of those worries will be resolved tomorrow when I take my daughter to see a specialist tomorrow regarding some health issues she's been having.

My cough is horrible today but fortunately I see my doc later this morning, I am going to inquire about Vitamin B injections again - and to see if I can go back on the anti-nausea med. I am now down to 103 pounds which makes my total weight loss at around 20 pounds at this point, the nausea is certainly not helping.

Thank you again to both Cusp and Lee Lee for your comments yesterday. I hope I can learn from your experiences and make the best decision possible. Thank you also, for helping me feel a bit less alone :-)

So yes, I have quite a bit on my mind right baby step at a time, I suppose.

Tuesday, June 8, 2010

Pushing Yourself

I know you aren't supposed to push yourself beyond your limits with CFS, I also know that in the "early" stages this is possibly even more important. However, so many of us do it (myself included) - so why?

I've done alot of reflecting regarding this - and for me personally it is a combination of reasons:
1. Non-support from family members (especially spouse)
2. The feeling that you might be on borrowed time (for lack of a better term), and therefore you need to do x,y and z if you can (in my case - pay down debts and save money).
3. Others opinions that if you drop out of work than you might actually get worse (yes, even my doc has mentioned this.........)
4. Here is the big one (and please don't slam me for saying it): The feeling that the only way you can STOP is when your body forces you into it.
(In other words, I don't have the "right" to stop working as long as I am functional - even if that functional level is greatly diminshed. That I don't feel my disability level is high enough to justify taking time off, etc.)

Now, I know these are issues (in ways of thinking, feelings of self-worth etc.) and aren't necessarily rational but I have a feeling that at some point more people than myself have felt this way (at least I hope so - LOL).

Here's the deal: If I were completely honest - I don't even WANT to work anymore (shudder I said it....), I feel that I am wasting valuable energy on a job that is exhausting, stressful, and that my mind no longer cares as much about. I used to be a highly motivated employee, who enjoyed coming into work, who thrived on the reality that I was doing the job of what should be multiple positions, and that people needed me and respected me. CFIDS took that from me, possibly when it took my energy.

So I stand on the ledge - trying to balance my life now - based on standards and ways of thinking from pre-illness and the reality of my health post-illness.

Even though I hear all of you out there (who I am SO grateful for) telling me all of these things I know are true - there is always that BUT in my mind...........

So honestly, if you feel comfortable sharing, what hurdles did you have to overcome (mentally, financially or otherwise) to make the decision to leave work? Or did it catch up with you in the end - just as I'm begining to see it will most likely do with me as well?

Monday, June 7, 2010

Took Some Time Off

I took a few days off last week and honestly it made coming into work today much harder. I've already been hit with stress and conflict this morning and it's VERY early in the day.

I overdid it a bit on Saturday and the cough and low grade fever has returned. My dad made the comment that I shouldn't be at work with a fever - this almost makes me laugh, if only I could take off every day I have a low grade fever life would be wonderful - but that would be the disability route I'm afraid.

I haven't written that option off, it still rides around in the back of my mind. I may have another alternative though, it might be possible for me to work from home more often but I need to wait it out a bit (if my body allows).

Honestly, some days I feel as if I'm waiting for my body to collapse, for my brain to give in, for the fall that I can feel coming. Then my body fools me and there is the rare day where I think I'm getting better, I feel a bit better, only to be reminded shortly it's not so. I suppose this is the wonder that is CFS.

Wednesday, June 2, 2010

False Hope

A comment from my previous post has me doing some self-reflecting. I think it's very possible that I've been hoping against everything else that something else is going on other than CFIDS. The Lupus thought process fed that sense of false hope and I really began to think that something else could be going on.

It makes me sad that I feel this way, I apologize to all those that are trying to get this more recognized and accepted for hoping something else was going on. Could it be the disbelief, the lack of support, the lack of good medical options that caused me to want something else? Probably a combination of all.

So now I must come back to acceptance. I have CFIDS (CFS/ME) and it's time to learn how to manage it - AGAIN. There is no time for false hope, there is only time to find away to make my life as full as possible and to help my body stay as healthy as possible.

When my husband says I can't see the positive - I disagree. I think it's just my form of acceptance. I do believe that every day doesn't have to feel as badly as today, I do believe that it's possible for me to improve. However, I don't believe I will ever have a drink again, I don't believe I will ever carelessly not listen to my body signals, I do believe I will always have to watch my energy levels. Is that really negative?

I see my doc again next week. We are going to look at supplements and alternative therapies - since I obviously am so med sensitive. This is a route I am more comfortable with, and I believe this route will teach me how to LISTEN to my body more.

Tuesday, June 1, 2010


My ANA test came back negative and the Sed Rate test came back low. I should be relieved and happy - at least that's what my doctor and husband think.

Instead I feel uneasy, and unsure of what's going on with my body AGAIN. Don't get me wrong, I don't want a diagnosis of Lupus, heck I don't want any new diagnosis. However, I also know I continue to decline, continue to have odd symptoms (that could or could not be from CFS), and I'm (in my heart) not sure that there isn't something else going on.

So now, I'm at a crossroad so to speak. Do I just "give up" somewhat and accept the diagnosis of CFS and stop these medical games or do I seek a second opinion to have more bloodwork drawn to rule out other things (I don't even know what at this point).

Part of me feels like maybe I'm grasping at straws. Meanwhile, my husband feels that I can't see the positive in anything - maybe I can't right now.

To recap - current symptoms include (does anyone else notice this list growing/changing):
Extreme Fatigue (unrelieved by rest)
Muscle Aches (daily - pain level has increased throughout the last month)
Joint Pain (especially knees and hips)
Burning Feet
Burning Face
Face, neck and chest rash of unknown cause (the face is classic of a butterfly shape - however the rash is very light - it is sun-sensitive)
Hot and Cold Spells
Dizziness and/or light-headness
Nausea (sometimes severe)
Weight Loss (Still losing - currently at 18 pounds total)
General feeling of being unwell (always as if I'm coming down with something)
Sore Throat
Hoarse Throat (gets worse the more I talk or the more fatigued I get)
Weak legs (especially when I have overdone it)
Concentration Issues
Word "lost" issues
Increased IC symptoms (mainly pain)

Friday, May 28, 2010

STILL Waiting

Well, I'm still waiting for my results and yes I'm officially anxious now.

Yesterday was a complete crash day - I did absolutely nothing, well I take that back I did find the energy to finally take a shower (we won't discuss how many days it has been -just be glad you couldn't smell me online).

At work today, but fortunately the office is dead thanks to the upcoming US holiday weekend - so the quiet and ability to SLOWLY get some work done is a true blessing today.

Wednesday, May 26, 2010

Waiting Sucks............

Not much to say today, I'm waiting on my test results, trying to keep my mind busy and not be too anxious. All easier said than done as you all know.

There is some stress going on at home (all out of my control), and I'm trying to block that out as well.

I feel rather badly today, it's Wednesday after all and my body is exhausted. The rash is also still sensitive and goes through burning periods - just a constant reminder that I don't know for sure (again) what is wrong with me.

Either way, I will be ok - I know this. Proper treatment for whatever is wrong with me is a must - however, waiting sucks!

Tuesday, May 25, 2010

Now we wait..............

I had some blood work drawn today (ANA Direct and Sep. Rate) and should have the results tomorrow or Thursday. My specialist feels strongly (based on mainly what was left of the rash at my appt. yesterday) that it could be a lupus he ran the above blood work first.

I am not liking this up and down, knowing not knowing, wondering again what the heck is wrong with me game. I don't blame my doctor at all, previously neither of us thought I had any lupus type rashes (butterfly across the face), guess I should have asked my family huh?

The onset is still strange and it doesn't explain my whole body aches (only the joint pain) - I'm afraid either there are multiple things going on (so what else is new) or I'm just literally falling apart.

My mood is definately not good today - I apologize in advance.

Monday, May 24, 2010

Another Appt Today - Not sure what is going on

Well, something strange is going on. The rash from Wednesday came back on Saturday. No new medication was taken and I was not itching at all. Although I still believe I had an allergic reaction to the Nuvagil, I'm not 100% convinced that the rash is tied in with the reaction (and neither is my specialist). To quote him: "I need to come in Monday afternoon so we can regroup, but he is very concerned about the nature of the rash".

According to my mom and husband they have seen the rash before (just not as bad) always after being in the sun (maybe 3 times max - all last year). I do remember once thinking it was my suncreen and not using that brand any longer. However, I know for sure in the past it never burned. Wednesday and Saturday it definately burned - BAD.

It is prominent across my cheek bones and nose - Saturday's went down my cheeks a bit further - and hydrocordine cream helps the burning. It seems to resolve within 24 hours except afterwards my face will feel tender.

So I'm wondering if........well, let's just wait and see I suppose.

Thursday, May 20, 2010

Allergic Reactions Only Make You Feel Worse

So it was officially an allergic reaction (the rash on my face came out in the evening), my doctor warned me last night that I was not going to feel well today............

That would be an understatement. So for all those that don't know, take a lesson from me: If you have an allergic reaction (severe, not hay fever type stuff), you WILL feel like you have been in a mangled car wreck the next day. Your CFS symptoms will be heightened to a great extent. If you also have IC - then the allergies will cause your pelvic pain to go so high that you will swear you should be giving birth at any moment. Lastly, you should LISTEN to your doctor and stay your butt at home.

I am handling a few things at work (since I'm already here) and then I am going home to the bed.

Good night all.

Wednesday, May 19, 2010

Today's Med .......... Is a Bust

Well, that didn't take long. I absolutely HATE how med sensitive I am. Again, I have ALWAYS been med sensitive, my entire life, now with CFS it is MUCH worse.

So how did that 25 mg of Nuvagil go? Five hours into it, my face is burning and I feel like I have bugs crawling all over me. I do not (thankfully) have a rash, however I am sure I will not be continuing this.

I have placed a call to my doctor. Do you have any idea how much I do NOT want to tell him AGAIN that I am experiencing atypical reactions on a low dose?

Oh well, I'll give my body a couple of days to recover and then we will move to the next round of med trial.

Today's Drug Is.......................

Nuvigil...................Today is the first day I am trying Nuvigil. I'm starting on 25 mg and then if I do ok today, I increase to 50 mg. So far, so good, however I have NO idea how I will afford this medicine if I can tolerate it.

My insurance company will not pay for it, they will cover Provigil at the highest tier but no coverage for Nuvigil. So we will see. Wonder, if I could just take as needed (like REALLY only AS NEEDED = in EMERGENCIES).

I'm hoping that maybe it can help me get through this week at least - until my "planned" crash on Saturday.

Tuesday, May 18, 2010

Let's talk about marriage and chronic illness

I promise that I won't continue on this rant. However, it can't be just my situation and I'm hoping that someone may read this one day and realize it's not just them, or if it's a spouse of someone suffering from a chronic illness that perhaps they can see the another side.

I realize and accept that chronic illness can be very difficult on a marriage. The statistics show that 75% of our marriages end in divorce. Think about that a minute, only 1/4 of marriages where one partner suffers from a chronic illness will make it through.

I'm not sure that I'm going to be in that category.

We are selfish beings by nature, and while we may not like to accept this it's true. In marriage, people get accustomed to their "roles" and the expectations they have on their spouses. Plus unfortunately chronic illness has a tendancy to normally hit on that turning point in our lives. Where our children have grown older, where we are more comfortable in our bodies, when our marriages grow back to being about the partners. Then all of a sudden, one of those partners is sick. ALOT. Unable to perform in the "role" they have always been in, unable to contribute to the running of the house, often unable (at some point) to contribute financially. The "well" partner, may feel neglected, angry, and confused. Perhaps even a bit guilty for being the one that is not sick.

Men especially want to fix things. If they are the well person in the relationship, their "suggestions" may seem like criticizing to the unwell partner.

Last night, was a bad night at my house. I received no sympathy regarding my work "crisis" this week, nor no compassion for how scared I was regarding this or the anxiety it was already causing me. Instead, I received a very matter-of-fact response that perhaps I should go to bed earlier. Heads rolled (so to speak), words were said, tears were cried (on my part). I finally said everything I have wanted to say, and it has been done. I am now completely withdrawn from the situation / relationship and the ball is in his court. I simply do not have the energy to fight or argue over the things I can and can not do, over how I spend time with my mother every week (even though it's only a couple of hours), over any of it.

So perhaps this is what really happens. The sick spouse withdraws and the well spouse moves on. Not sure, how this will turn out in my case, only time will tell.

Remember, we all have choices and sometimes we have to make "unpopular" choices in order to survive especially when faced with chronic illness. To withdraw may not be the "best" choice, but for now it's the choice I have made.

Monday, May 17, 2010

Is this a Sign?

I just found out that I am being required to attend an off-site work related meeting on Friday of this week. I will not be able to work only 4 days this week because my co-worker is off work so it will be "longer" week already.

The meeting is at least 30 minutes further away than my job - and I must be on time (meeting begins at 8am). They are then holding a "reception" from 5-6pm.

Let's all do the math, shall we? This means I must leave my house by 6:30 a.m. - and will return home if I'm lucky by 7:30 p.m.

This is not going to work at all.

If only....................

My weekends are becoming beyond predictible. On Saturday's I spent a couple of hours with my mom and then do whatever housework I can manage. This Saturday I went over the top a bit, and scrubbed my husband's shower (it was beyond gross), cleaned both bathrooms and straightend up the house. I (of course) took breaks between each task, but still managed to overdo it. Saturday evening I agreed to go with my husband to the neighbors for dinner - managed to stay until 9:30 in a feeble attempt to spend time with him, only to leave by myself and for him not to come home until 1am. This is becoming a constant, predictible outcome as well. Needless, to say I was down for the count all day yesterday. I'm asking myself what did I gain from any of that?

If only we could find things to do together now that accomodate my illness, If only he would be considerate enough to come home with me occassionally, If only I felt as if he was making an effort.

I know it seems like a lot of whining and I apologize in advance - but this is where my life is right now, this constant state of figuring out, and adjustment, and realizations.

In other news, I gave my doc note to my employer, as I expected they wanted to send me out on disability because they could not accomodate such a broad request, nor can they accomodate my working from home. I have agreed to finalize the agreement to work 4 days per week and continued flexibility on morning arrivals. I have been informed they absolutely can not accomodate me past this. I'm hopeful that I'll be ok with this, I'm also still planning for if I'm not.

Friday, May 14, 2010

More Meds and Ongoing Issues at Home

My specialist FINALLY received my latest lab reports from my primary care doctor. I almost put former primary care doctor because I am in fact in search for a new one.

My iron levels are good, I am moderately deficient in Vitamin D and will be taking 5,000 units per day for some time to come.

The specialist wants me to try Cymbalta and Provigil now. I am honestly sick of these med trials but will be a good patient and give them a try. It's just that I am so absolutely med sensitive that 90% of the time, I see such little benefit but have great side effects. I'm hopeful if these don't work we can go a more "natural" route (he has mentioned B-12 injections which I would happily try).

Meanwhile, I received his letter to go to my employer. It's quite frightening in my opinion. First, let me explain that in my position, they must be able to count on my dependability, I am not able to work from home, and while they are willing to be flexible with me the extent of that is reducing to 4 days per week and a small bit of flexibility on arrival time (within 15 minutes - IF nothing major is going on in the office that morning). It is essential that I am here as much as possible.

So my specialist writes:
"Dear "Employer":
I suggested I write this note to explain Ms. "Dawn's" difficulties with work due to her current illness.
"She will perform work tasks best if she has flexibility to work when she is at her best, and rest when she needs to. Only she can determine what her work hours can be. Experience has shown that patients with this condition do their best when THEY are given the responsibility of deciding when and for how long they work.
*Her performance is also likely to be best when as much as possible of her work can be done at home, so she can most easily take breaks, and if necessary naps throughout the day."

My employer will not know what to do with this and more than likely will indicate that if I truly require that level of flexibility that they will be unlikely to be able to acccomdate me (I also manage HR here - so I am truly speaking from experience). The only thing I know to do is to write a note myself (to include with his note) stating that I realize that my current position does not allow this level of flexibility and therefore, I am requesting to be accomodated by 4 day work weeks and continued flexibility with my work hours. Any other thoughts or suggestions?

Meanwhile, my husband came up yesterday in a horribly foul mood, first he was "ill" that I had not thought about dinner or prepared anything "since I was off work all day" yesterday (I never did cook - I ate a sandwich). After I thought he had calmed down I showed him the letter I had received. Now he believes that instead of reducing my hours to 32 hours per week that I can instead work from home one day a week, therefore no loss of income..........for the life of me I can't explain to him that working from home one day a week is not going to be sufficient.

Something has to change - somehow - at least in one of these areas.

Wednesday, May 12, 2010

CFS/ME Awareness Day

Until my diagnosis and obsessive research as a result, I had no idea that there was an awareness day for CFS/ME. This is quite a shame. How are we to be better understood, receive more research funds, and find common workable treatment options with so much silence?

Chronic Fatigue Syndrome is life altering. Period. In order to obtain a diagnosis you must have a reduction in activity/functioning by 50%. Does this not seem alarming to the general public? Imagine, if tomorrow you woke up and suddenly were only able to do 50% of what you had done the day before. Imagine, if even accomplishing this 50% was like trying to climb out of bed with a severe case of the flu. Imagine, that this is a good day and on a bad day you are barely functioning at all. This has been my experience with Chronic Fatigue Syndrome, and I'm one of the more fortunate patients. Some patients are bedridden, others are absolutely unable to work at all, some are housebound, others have to have family members assist with basic self care needs.

Now imagine while you are dealing with all of this, to be told there is no cure, there are no universal treatments, there is no known (scientific proven) cause, and there is no way to tell if you will improve, sustain, or get worse.

My request for today is quite simple. If you know someone with CFS/ME, please don't doubt them, please don't assume they are lazy, please don't suggest treatments that you know nothing about. Instead, please drop by and say hello, please ask if you can drop off dinner for them, please be willing to come into their house and visit for just a little while. Please try to imagine how difficult it would be to live like this every day and to pray every day that someone, somewhere will come up with some research to explain this better, to provide better access to disability benefits when needed, and for treatment options that work for a larger portion of the patient group.

Tuesday, May 11, 2010

Update on Meds & General

The anti-nausea medicine is a huge help. It is such a relief to be able to calm down that one side effect at least. Currently I'm taking Ultram (200 - 250mg per day), Zofran (4 mg PRN - up to 2 times per day), Valium (5 mg PRN - up to 2 times per day), blood pressure meds and daily bladder instillations. Yeah my pharmacy "loves" me. This is why I am currently hesistant to add any more meds right now, I feel like a walking pharmacy as it is, and don't even ask what my monthly out-of-pocket costs is..................

This is one of the parts that suck about having multiple chronic illnesses. By the time you are treating each part you are overloaded. The bladder instillations require time and concentration. I have to truly focus to make sure I'm measuring the meds correctly, this can be difficult on evenings that my brain is beyond foggy, but if I don't do it then my bladder will be screaming the next day.

My IC diet made food choices complicated to begin with, now I'm noticing other food issues related to the CFS/ME, at this point I am beginning to wonder what I can eat.

My question for the day is: Do you find that you are more sensitive to certain foods? Do you notice that carbohydrates or white foods add to the crash and burn effect?

Monday, May 10, 2010

Follow Up to Dr. Appt.

My hours are being reduced. My doctor is working on a "positive" note to send to my employer, regarding flexibility in my schedule and reducing my work days to 4 days per week. I should have the documentation this week.

I'm relieved to be honest. It's over and done with and now my husband is agreeable - since it's coming straight from the doctor.

I will be using some vacation time initially to make up for the reduction of hours, in order to continue with MY planning for a few months.

I'm hopeful this will help and allow me to continue to work, I'm a bit afraid of what happens if it doesn't, but am trying to take it one day at a time.

He also prescribed Zofran for the nausea and though it makes me a bit tired (LOL), it truly does help and I'm hopeful that I will be able to gain some weight back now. I'm down 15 pounds at this point - I'm officially underweight.

In other news, my husband and I are living somewhat seperate lives, and I'm finding that I care a bit less every day...............again one day at a time.

Friday, May 7, 2010

Follow-up with CFS Specialist Today

Today, I go to see my CFS specialist for a follow-up. I know we are going to do some testing involving exercise and how my blood pressure reacts to try and determine the cause of my blacking out, dizziness, and feeling faint.

It's a perfect day to use as a good example. These problems increase as my fatigue and push cycle does, being that I worked all week (without a day off), worked late yesterday and it will be Friday afternoon when I go.............this will be the truest picture he has seen so far.

Any bets on if my work hours get reduced?

Thursday, May 6, 2010

Time to start planning for Me

I saw my therapist again last night. She has met my husband one time (and fortunately saw right through him) and is aware of the issues we are having (across the board, some related to my illnesses, some related to previous issues in our marriage, and some issues with verbal abuse on his end). She feels that short of therapy for him (which he is absolutely not on board with), that I need to begin to plan for me. In other words, instead of just planning for my possible departure from the workplace, that I also need to start making plans in case he decides he can't handle this and leaves me, or if I decide this relationship is not healthy for me and I must leave.

So this is where I am.............I need to continue to plan financially for both possible outcomes and emotionally prepare for both as well.

How does this equate to low stress?

Wednesday, May 5, 2010


With chronic illness that is often misunderstood there comes a bit of isolation. Even though, I am surrounded by people all day (at work and home) - I often feel as if I am moving through it alone. You don't tell people how your feeling, the mask of "I'm OK" is on and takes most of your energy to keep it on and looking well, the pain and fatigue makes it difficult to carry on a conversation or to truly listen to someone else.

It's almost like if your in a crowded mall, and your trying to get through the crowd without bumping into anyone - only it's every day and everywhere.

If you break these barriers then you get unsolicited advice, disbelief, or questions regarding shouldn't you push through. Even for those, that do "believe" that something is wrong (because they can truly see the decline) to bring it up is taboo for some reason.

Wouldn't it be great, if we could all take down our fake faces and barriers and come out of isolation?

Monday, May 3, 2010

Pet Therapy

My CFS/ME specialist has a dog in his office (have I mentioned how absolutely cool he is?) - her job is to greet all his patients and hang out with them in the waiting area until appointment time. Studies show that pets lower blood pressure, reduce stress and can even help one deal with pain a bit better.

I am a strong believer in this. I've always been an animal lover and even before my CFS diagnosis - had a small zoo at home. We have 2 dogs, 4 cats, and 3 fish tanks.

The puppy is wonderful for snuggling when you don't feel well (although she's a bed hog - LOl). My oldest dog is great at reminding you that limitations and disabilities can be a way of life but the grass still smells the same (he's been handicapped since 18 months old - is now close to 8 yrs old). My cats remind me that it's ok to just lay around and watch nature from the inside out and are great snugglers as well. The fish are far more relaxing than I thought they would be. I have one tank that I can see perfectly from the couch I normally claim when out of the bed at home.

On bad days, when you don't want to speak to others, answer their questions regarding how you are doing, or just simply have that NEED to just be alone - my animals are never in that category. They love me the same as always, they love my sick days because it gives them someone to lay around with, they are grateful for whatever little attention you can muster to give them.

People often ask me if the animals are too much for me now. First, I'm lucky to have 3 other adults at home that can do walks, help feed etc. Second, I can't imagine not having them around - especially now.

Odd Leg Sensations

This weekend I started my "cycle" (sorry in advance for any guys reading), and had intense IC pain related to it. Strangely though I also had the oddest most frustrating leg sensations ever. I have no idea how to truly explain it, but the closest I can come too is an odd sensation of muscle aches, pin and needles and this need to move around, this was mainly in my legs and feet. Once the IC related pain had gone down this went down also.

Needless to say I was down all weekend.

Friday, April 30, 2010

Doctor's Appt - Primary Care

I must find a new primary care doctor. I had this silly idea that ones primary care doctor should coordinate your care between specialists etc. I apparently am far from correct.

I had an appt with my primary care doctor yesterday for a blood pressure med refill and to get my Vitamin D levels checked (per a request from my CFS/ME specialist).

I found out that they have not read or observed ANY of the notes that this specialist or my urologist (for the IC) have been sending over after each appt. - they simply scan and attach to my file. The first thing the doctor said to me - when I told him about my most recent diagnosis was "you certainly appear to have many ISSUES but it appears you are being well taken care of by all of these specialists". When I mentioned the cough I have had for 2 weeks now (which is getting worse daily) - he said "well that's probably related to one of your ISSUES" and never even checked my lungs. In reality he must have used the word "ISSUES" ten times - I literally wanted to scream. I DON'T HAVE ISSUES - I have illnesses/syndromes. Is it too much to ask for my PRIMARY CARE DOCTOR to treat a cough or a sore throat? Should I have to run to my specialist for such things? He even said - it's a good thing you are seeing specialists because you care would be too complex for us. When I told him about the CFS/ME diagnosis - I swear he almost rolled his eyes.

So, it's time to find a new primary care doctor - since I have so many "ISSUES" and all.

Wednesday, April 28, 2010

Medication "Choices"

As I mentioned before, my doctor wanted me to try a "trial" of Neurontin. He started me on 300 mg - once per day, 5 days, then increase. I took for 3 days (at 300mg) and was unable to function. Between sleeping and resting I was down for 18-22hours, I could not drive, and fell in the kitchen at one point.

My husband was gone most of this time (hanging out in the neighborhood etc. - and even when he's home, he's in our room, instead of the family room) - so he chose to "ignore" how difficult a time I was having. Or perhaps he thought I was just having a bad spell, I have no idea.

On Monday, I left my doc a message stating it wasn't going to work, explained my symptoms, and said that I would just wait for my next appt (in 1 1/2 weeks) to discuss any more meds.

My doc left a msg at our home last night stating that yes I should stop taking, that he was "surprised" that it had effected me so seriously, that I was apparently EXTREMELY med sensitive, that he had started me on a dose that was 1/3 the dose that most people begin on and 1/10 what most people take daily.

Wait for husband heard the message first and FLIPPED out on me. First, apparently I should have told him that I had decided to not take anymore before I called the doctor. Second, apparently he feels that perhaps I was overstating my side effects since it was such a low dose and that I didn't give it "long enough" to work. All he kept saying was "I'm just trying to understand" (rudely of course).

So NOW he shows interest?

So now, that little voice in my head (that I HATE anyway) is saying that my husband doesn't believe me, that my doctor thinks I'm crazy and that he doesn't believe me, and that I'm not trying hard enough!!!!!

I personally was not surprised that I couldn't tolerate it. I've always been med sensitive and tried a trial of Lyrica for my IC pain previously, got up to 75 mg and couldn't drive or stay awake. It seems that NOW, I'm even more med sensitive. I don't know if it's because physically I'm so weak that my body just can't handle anything else or if it's because of the CFS/ME but regardless I sure wish that little voice would shut the **** up!