Appreciating those special people

It occurred to me recently how very fortunate I am.  I have three beautiful children, just added a beautiful granddaughter and the most amazing man I think I could have possibly ever met.  I don't know what I must have done in a previous life to deserve such great fortune but perhaps I don't let them know quite as often as I should how absolutely amazing each one is and how truly blessed I am for them all.

My fiance is a true super hero but maybe one that is conflicted and doesn't know yet that he has these super powers.  The man works very hard, averaging 6 days a week, comes home and continues to work hard.  Unfortunately for him, not long after we met, I started to become not so well.  I always had little pangs here and there but the pangs turned into pain, and developed into chronic pain.  He complains sometimes that I am always sick, but other than all his complaining you would never know living with and being with someone like me who is chronically unwell was anything but exactly where he wanted to be.  I can't imagine Royalty could be lavished with more love, attention and affection from their subjects.  He daunts on me.  He is my morning alarm clock, my medicine dispensary, my personal chef, personal trainer, butler, chauffeur and of course amazing lover! All that and he's super sexy!  If I'm having a bad day just knowing that he's there to protect and love me is all I will ever need.  I believe I would never be able to face all that I have gone through and all these illnesses have done to me if it weren't for him.

Do you have someone who you truly love and depend on?  Someone who you may not feel you can express your appreciation for them enough?  Tell me your love story and how that person has affected your life.

Not so unbelievable

I would love to say it's hard to believe that I haven't posted in over a year but it's really not that surprising to me.  It's probably not too surprising to anyone who really knows me either.  What might be surprising is that even though I don't log in here to post I have notes, spirals, a memo app on my phone and countless other places that I keep notes and collect info for no purpose or end game other than chronicling those little things that remind me that something is not quote right or that my body is off at the moment.  The thing about it is, my symptoms sometimes subside, leave altogether or take a long sabbatical leaving me to forget what it was that was concerning me in the first place.  The problem for those around me is that they witness and hear about those times that I know and feel something is off since I have a tendency to not only write it down but also voice it whether to myself or whomever is sharing oxygen with me at the time.  What this interprets to for those people around me is constant whining, whimpering and complaining.  It seems as though the doctors have labeled me as depressed and having anxiety.  I may have to agree with anxiety but I will have to respectfully disagree with any reference to depression.  I know that many will say that chronic illness and depression go hand and hand and I suppose it makes sense but for me I just cannot accept it to be.  Yes I would absolutely love to stop being in pain, yes I would love to have answers and be "fixed" but to try to label me with some general anxiety or depression term in order to explain away any symptoms I have I will not accept that.  To say someone is depressed because they would like to get back their quality of life is no more accurate than the days of old of blaming everything on dehydration and hormones.  Our bodies are complex and just like any machine can have multiple systems that are affected by something quite simple.  Why does the health industry look for a long difficult explanation and when incapable of narrowing down to one item blaming general things like anxiety and depression?  Hopefully I can keep coming here to keep a diary of these feeling, my symptoms, test results, diagnosis and other silly things I find out along the way, and hopefully one day this will help someone else who might feel lost identify with another lost, but not depressed soul :)

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.

Please don't call me lazy

All of my life I have been told that I have so much potential but I am just lazy or I don't apply myself.  Well maybe that is true, maybe I am lazy.  Think for a moment if you were sleep deprived and if it were a chore for you to make it through the day, to struggle to stay awake through an eight hour work day not to mention the hour commute there and then hour commute home, collapse for a 30 minute nap and then wake for a few hours of you time just to go to bed with many different episodes of waking in the middle of the night, never getting that deep sleep that your body much needs to re-charge.  Now imagine going through this for 41 years, 3 children, 2 divorces and countless other life changing events.  I know, lot's of people go through all sorts of things every day and that is what I told myself for years, the difference is that I don't ever get to regenerate.  I am a Narcoleptic and my body doesn't allow me to.  So if I seem to be lazy it's not intentional, it's sheer and simple exhaustion.  Imagine your most exhausted state, do you want to get up and do those things that really need to be done? Can you always do them?  Sometimes your body just doesn't allow it.  So please the next time you feel the need to judge someone, take some time and ask them if maybe they need some help or if there is something else going on.  Maybe they're not lazy, maybe they just need a moment, maybe they need just a 25 minute nap to re-charge.  That might be the best they can ever hope for in this life, because that might be all that they can get!

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.

Something I can relate to

I was trying to explain to my fiance what it is like to be me and how I feel and I don't think he ever really got it.  One day I was trying to figure out if the pain from my fibro was really related to or should I say caused by the Narcolepsy and I came across this article that almost perfectly describes me and just like the writer states in the article every narcoleptic has their own experience and own set of symptoms.  Every narcoleptic experiences these symptoms at different levels.  Some of us have some of the same symptoms but experience more of some and less of others, but one thing is for sure it is really hard to explain to a non-narcoleptic what it's like and apparently it's hard for them to understand.  If you are a non-narcoleptic and you are interested in a great explanation check out this article.  If you are a narcoleptic and would like to direct a non-narcoleptic to a great explanation send them this link or if you would just like to read it so you can have something to relate to I would suggest taking the time to have a good read.  You'll be glad you did!  I was.

http://voices.yahoo.com/narcolepsy-narcoleptics-explanation-disorder-3708382.html?cat=70


Oh, and as far as the pain, who knows which came first, guess it's like the chicken and the egg.  Do I have pain because I don't get the proper restorative sleep my body needs or do I not get sleep because my body is in constant pain?  That is probably a question for a philosopher or a medical professional, neither of which my muddled brain will ever be able to train to be, but that is probably a subject for another day.

Do you see me?

Prose for the compassionate judgmental types:

When you look at me what do you see?  Do you see a bitch?  Do you see a faker?  A complainer?  A whiner?  An attention seeker?  Someone making something out of nothing?  Do you know what it is to be me?  How scared I am?  How alone?  What I feel?  How I hurt?  How exhausted I am EVERY FUCKING DAY with no explanation, no relief?  Do you think I WANT to feel this way?  I WANT TO BE NORMAL!  I want to be perfect!  I want to be like YOU!  You, who sits in your ivory tower watching, judging and whispering about how fucked up I am.  Can't I join you?  Won't you let me join YOUR club and quit this one?

dedicated to all the people who have "invisible" illnesses