Get Inspired!

So this weekend has been hectic so far and will be all the way until Monday morning when it's time to go back to work, but I wanted to get at least one post in because I found inspiration in an unsuspecting place on Friday and can't stop thinking about it.  One of my co-workers who also has an auto-immune disease is doing something about it!  She is involved in an organization call ed Take Steps.  While promoting this event we got to chatting and I'm so glad we did!  As another sufferer of an auto-immune I understand how it is when people don't understand that you are sick because you don't have something like cancer or heart disease and they don't necessarily understand it.  People generally only care or ask or seek knowledge about what directly effects them.  This was a perfect conversation starter as I am the "new girl" there and don't know many of my co-workers.  We didn't have any in depth, eye-opening, philosophical type of conversation that would move Heaven and Earth but just getting to know a little bit about people in your work, community and neighborhood deeper than just your name, age and race is nice sometimes.  It's inspiring in a world where we are so attached to our electronic devices and just rush past each other in the grocery store.  It inspired me and took me back to a time when I was younger and people knew each other better and where more empathetic to each other rather than being so automated all of the time.  It gave me hope!

If you are interested in her cause the link can be found below and donations of any kind are always welcome year round!:

http://online.ccfa.org/site/TR/2013TakeStepsWalk/Chapter-NorthFlorida?px=2337255&pg=personal&fr_id=3852

If you have problems with the link or if expires for any reason please message me and let me know so I can get an updated one.

Beware the balance

So yesterday I went for my follow up to see how the meds were helping and make adjustments as needed.  When I started out on the Provigil I was very nervous that I would get that jacked up, cracked out feeling and luckily I did not, in the beginning.  I say in the beginning because a week and a half into the treatment I came down with an awful stomach virus.  I had been reading Narcolepsy forums and other sites and had read that some other PWN(people with Narcolepsy) would take what is called a "drug holiday" in other words they would not take the stimulants on the weekends.  You see we need these in order to help function at work and make it through the week but on the weekend it is easier to stay at home and listen to your body and take naps.  I must admit I still don't know how exactly Provigil works, but from what I understand the medical profession really doesn't either.  So I have this stomach virus, I'm on a drug holiday, I wind up having to miss one day of work due to the illness but decide it is Monday and need to continue on with my normal routine and start taking the Provigil again.  This is the first time I take it and go back to sleep and sleep for a couple of hours, but I wake up and all is good, or so I think.  Later that night I start to develop mild anxiety.  Now I am no stranger to anxiety, it has visited me a bit in the past but being a fairly intelligent person I can usually distinguish that I am in fact having anxiety and not say a heart attack or some other emergency. (of course after the first few times of swearing you are dying and then coming out the other side and realizing you didn't, it's scary to think I might one day actually be and brush it off due to the amount of anxiety I have lived through, but again that is something that deserves another day and it's own whole topic) Well unfortunately the anxiety begins to become more frequent to the point it becomes a daily thing with the Provigil.  This mostly hitting me at the most inopportune time, like right as I am driving home from work.  Wednesday I am at a marketing meet and greet through the local Chamber of Commerce and I go to the ladies room to blow my nose and realize my nose is bleeding, which of course triggers a anxiety attack because here I am at a social event with 90 strangers that I am committed to staying at for the next hour and a half and my nose has just randomly started bleeding.  Luckily I make it through get back to my office and call the doc.  He then tells me the nose bleed is most likely caused by allergies and it is quite normal at this time of year and can be cured with a simple saline solution.  This has a huge calming effect and we agree that I will keep my Friday appointment.  So yesterday we decided, increase in the Provigil to keep me from falling asleep in the bathroom and car on the way home. Oh yeah, forgot to mention still doing that, possibly the reason for anxiety. He also gave me a mild anxiety pill to use in a pinch.  We don't want to use it if unnecessary since it will make me tired.  Luckily even after I got back to work and it was so hectic yesterday no anxiety so that was a good thing, but the downside, it drained all of my energy so as soon as I made it home, and let me tell you it was a struggle, I fell asleep 3 times at the same light due to the time it took to make it through the light and people were honking and cussing, but as soon as I made it home I laid on the couch and was right out for 3 hours.  Woke up to poke around on the computer for about and hour or so and then right back to bed.  This had me up and down all night in excruciating pain from the Fibromyalgia. You see the more sedentary you are the more stiff you will become and the pain increases, but the Narcolepsy makes you want to sleep. Here I am this morning stiff, sore, joints and muscles burning and still a   bit tired.  So for everyone there is a balance to be found, a balance in the meds for me and a balance between the syndrome and disorder that plague my life daily.

Some privacy please

Well not sure about the whole Provigil thing.  I just don't know if it's helping.  I mean it might for an hour or two but when it wears off it takes every bit of energy I have with it.  I mean it sucks the life right out of me!  I just don't know if it's worth it!  I think I might rather drink 5 Zipp Fizz and get too much potassium and take my chances with the heart repercussions.

Yesterday I fell asleep in the bathroom stall and was jolted awake to the bathroom door being ripped open.  I gave myself whip lash as I flew into an upright position.  I honestly do not remember how it happened but there I was head between my legs like a drunk girl at a Frat party, out for the count, dreaming.  Cant't remember what the dream was now, guess I was so shocked and full of adrenaline from the "whoosh"of the door and the fresh air circulation that lifted my hair off the nape of my neck, but it's early afternoon and I feel myself headed in that same direction this afternoon.

This morning was harder than usual, it was cold and I was hurting so always makes it hard to get up!  Finally dragged myself up and out and on my way. I waited to take my meds figuring the later I took them the longer they would last and I really need them to work while I am working.  Well upon reflection, this may not have been the best idea.  I used to joke to people that I slept in the car on the way to and from work, and it's half true. I mean of course I am not snoring but you do get into a rhythm, and by rhythm one might say auto-behavior.  Well you can follow all of the other cars for quite some time pretty well if you pay attention every once in a while.  You can't tell me PWN are the only people who do this!! I am positive that others do it as well! Either that or there has to be a lot more undiagnosed cases than we could ever imagine, but I digress. While following along I guess I wasn't paying attention in just the right places and wound up taking the wrong exit!  This wasn't the first time.  I have lived in this town 6 years and it is quite spread out and easy for me to get lost in.  Luckily this time I realized it quickly enough and made the adjustments to make a U-turn and get back to the high-way and back on track.  I promptly cracked open a water, prepared a zipp fizz and took my meds.

By 11 am took the 2nd half of my pill and now it's almost 2 and it's COMPLETELY warn off!  I am afraid I am gonna fall asleep again today!  I don't know how I am going to make it through this week!  I am going to have to stay on this dose for a full month and it's going to be so hard! I think I was better off before the Provigil/Modafinil!