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.