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.

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!

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 rash............so 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.

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

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.

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.

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.

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.

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.

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.

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?

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.

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?

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?

Isolation

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?

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.