Some people say now is the time where everyone is in a magical mood. I disagree, I'm not exactly pooping rainbows. I'm a hot mess and I don't mind being a crabapple about anything and everything. Especially right now, but that doesn't really have anything to do with the holidays, more or less it has everything to do with it being cold outside and because I'm sick. This title is called "time to be honest" for a reason. It's time to be honest with my friends and family and let you know what's really going on.
I'm sick, I have Fibromyalgia, a mirad of other "symptoms" and "problems" that are ignored and blanketly attributed to the fibro, arthritic condition, Inflamation markers in my blood and inflamation in general, weak muscles, Depression, I'm on a crap ton of medications which give me anything from weight gain to dry mouth to Menopause and Lactation, and no... I'm not joking I'm actually suffering from those things. Lactation was particularly disturbing considering I stopped breastfeeding 10 months ago and I'm most certainly not pregnant. I am a girl still tho, that's unchanged.
I'm 30 years old and I can tell you that my 12 month old son can get out of my bed in the morning without help whereas I need a hand. I have chronic pain, achy joints, frequent headaches, pain at light touch, stomach problems, fatigue, menses that lasts 3 weeks straight, memory loss, infections, blood from where it shouldnt be, sensitivity to cold and light, heightened hearing, depression, sleep disruption, restless legs, and most recently suicidal ideation.
I've been in a rough place BUT I'm now seeing a different doctor who took my blood and lots of it on Friday to test me for a few other autoimune disorders. I am, plainly put just "dysautonomic" but what exactly is wrong with me isn't really clear. I have all these diagnosis for the "symptoms", problems that pretty much ruin your life. But we think its a symptom of a bigger disease or disorder and so does my rhuematologist. She and I both are believers that this is neurological, but not "all in my head", and that since there is much that they don't know that we can't just give up and tell me take these pills and go away. She wants to keep testing, I'm fine with that, but she's kinda expensive, LOL.
I've just recently gone through an emotional rollercoaster with group health. Doctors are assholes, not all of them, but a good portion are not there for their patients and only in it to play the Insurance DX/PX code game and make the most money out the system. I was getting really tired of watching my symptoms get worse and hearing the same thing, take these anti depression pills and exersize. Well doc, it's kinda hard to work out when you cant walk, bend, lift, stand or want to live anymore because the pain is so bad, GEE THANKS DOC! YOU'RE A GEM! Also, the more weight I gain the worse I feel and the harder it is to work out.
As much as I WANT to get in shape, all I can do right now is eat right and hope that when I feel better I can try to walk off some calories or do Yoga. I am a firm believer in organic foods, it's helped me keep food down and feel so much better, I have been eating healthy and small portions but that doesnt help when your metabolism is down and your body is in hybernate mode. Right now, my work out is taking care of a 1 yr old, and that's not easy, he's not a lazy baby at all. So, add in the chronic pain, and the depression and I now have serious self esteem issues. I don't like myself and that weighs heavy ( pun intended) on a person who is already feeling sorry for themselves and constantly assessing their self worth, giving them medications which amplify this is a recipe for disaster.
So, I've been, for the past few weeks, rather suicidal, It's not that I really WANT to die, I just wanted the pain to stop and I could not help have those dark thoughts, I told my doctor about it and she ignored me. I don't mean I hinted about it, or anything passive, I straightup told a doctor I was suicidal and she did nothing helpful, unless ignoring me is helpful in some circles. I told my husband because I knew I needed help and he's helped me, it's obvious to us that the antidepressent I was on was causing this, because although I've been depressed mildly for awhile, I never thought about killing myself. So now that I laid all that out on the table and reached out for help I'm weaning off the drugs, but it's emotionally crazy up and down, and I'm looking forward to finding a normal level.
As for the other medications I am on, I'm currently going to have to continue on them till we find a differential diagnosis, my condition improves, or we find an alternative treatment, right now i'm discusing everything from hormone therapy to steroids. I've gotten many a helpful suggestion from people who have tried this or that and I really really really beg you, please don't try to help and don't try to comminsserate with me. Many a well meaning person has said oh I think i have that too, I'm always sore and tired, but it's not likely to help. It's likely that you don't wake up in the morning in pain and need someone to help you stand and get to the bathroom. You don't tell yourself to stop wishing you were dead, pop a vicodin, and pray that you have the energy to make it until naptime and you can lay down.
For me, crying because you're in pain, actually causes more pain than relief because the sobbing hurts the back and your head. Over the counter, might as well be called throw money down the drain. Medicine is trial and error and dream "treatments" are a nightmare, I actually had to convince my doctor that I truly could not get massages! Thank you doc for approving a free 1 hour massage a week, but I can't get them because no matter how light I ask to be touched, it hurts so bad I an barely drive home and can't move for a day and half after. I don't want to hear about accupuncture, about naturopathy, crystals, colonic cleansing, fasting, atkins, and please don't tell me to start smoking pot, because I'm terribly allergic to that too.
Smoking weed might as well be as effective as licking dog shit. I'm not saying it won't be a miricle for others but its not for me, Neil was telling me that they are learning it has antibacterial properties and doctors are trying to use it for new ways now, which makes sense because I am allergic to antibiotics. Please don't ask which ones. That's my favorite game at a new doctors or with a new nurse. My allergy list is longer than the list of unfaithful US Senators.
So I'm ranting now, which isn't good, you're likely bored by now. Are you bored? Maybe we should pop in some music...
I wanted to tell you all this because I'm effective at hiding it for the past few years and it's not getting better. I've probably not been to your house in awhile, I don't go to the bars on weekends, I don't go out for doubles dates or at all, I don't stay very long at family functions when I am invited, and It's likely that I've cancelled on plans at the last minute, or sent my husband to the party without me, it's very likely that you've stopped inviting me to things, or given up, It's likely you think it's because I don't care, and you are really wrong about that. It's that it's really hard for me to be comfortable outside my routine.
I need to be comfortable to maintain "as good as it's gonna get", I need to sit in a soft spot, to not chase my son around from breaking your stuff or killing himself, I need to be in comfortable clothing ( not fit for public wear ), I need to be able to take my medicine when i start to hurt and that impairs me from driving and acting normal, or at the very least hiding from you what I've hidden all these years so far. I am in pain, I am sick, and I can't tell you because It's embarrassing, because I don't have an answer why, or because I don't "look" sick. I don't tell you because I don't want to hear your opinion on how I need to take better care of myself, how if I tried talking to tiny sea people in paper cups every third red moon and prayed really hard that my problems will go away. I don't want to hear about modern day cures and ancient medicine, I don't want to hear how your cousin passed out at thrity one flavours that one time, because ALL I do is know what is wrong with my body and how I feel, I've been sick forever.
I don't want to talk about it either, I'd rather listen to you tell me about your shitty boss, and your sticky whiney children. I'd rather hear about your vacation than talk about why I can't take one. Make sense? I don't get out of the house, my husband does so much to help take care of us, I sometimes have my groceries delivered because I can't do the shopping alone with my son or I don't have the energy. So, I'm not intentionally being a bitch. I'm not meaning to not be a part of your life, I genuinely can't do it somedays and I NEVER ever EVER know in advance of when I will have a good day. I live moment to moment and it's not as fun as you think that might be. It's a struggle to keep my house clean, to make sure I earn my paycheck, to make sure my kid is clean, fed, intellectually stimulated, to keep my husband in clean underwear, and to barter with myself. I have to debit energy and activities. If I have to work tonight for x hours I know I can't be rough on myself during the day or I'll be in too much pain to sit at my desk or table and work. If I know I have to go pick up milk or do laundry, that means I have to subtract one or two other activities, because I won't be able to do it all. I only get so many mana potions a day and those bitches wear out quick.
So, what is easy on me? Well, if you come to my house, I am almost always home and available to hang out. If you want to hang out and have adult time, have dinner with us, watch a movie, play a game, drink a beer, etc then you are welcome over. I might ask you to BYOB, but give me a call and lets plan it. It's easier on me at home because if Connor is awake we have baby gates in the living room and a safe zone where he can't hurt himself and I can stay seated and not wrestle with him. If you live far away then my visit will be short because I have to factor in how long it takes me sitting in the car to and from and to route around traffic which makes it take longer and the longer it takes the more it kills me. This is not personal, I want to hang out but I want to not hurt too, and now that I have Connor, I can't barter with myself and say I will suffer and if I hurt tomorrow I will just sleep or take extra medicine, because I can't do that anymore I have to be awake and I can't just blow through it because then I can't work if I'm too tired from being a mommy, if I start out on a deficit or owing myself from doing something too hard it, becomes cyclical and unbeatable.
That's what happened Saturday. I had family over for Connors birthday, only 2 1/2 hours of party time, but set up, and being on my feet the whole time and the night before cooking food for 15 people. I was dying, but I had to hide it and I had to smile, having family and friends over made me so happy, but it hurt too. I would have still done it no matter what tho, I had a great time and it was worth it. But, I felt afterwards that it's time to tell the truth about what is wrong with me, why I might not be talkative as much as i used to be or why I don't make plans or why I'm not feeling well. It seemed only fair that those who were willing to be there for me, should deserve the truth, and I deserve the relif of being able to be honest about how I really feel too.
I shouldn't have to keep hiding this, it's not fair to anyone and it's damaging, so there you have it. I'm sick and It's chronic, right now there is no cure for Fibro, and they don't know everything that is wrong with me and so far, a good doctor and a good treatment hasn't been found, but I'm not giving up. I'm not looking to tell this because I want your pity, I want people to know the truth, I don't want people to think I don't care about them and I don't make plans because they are not important to me.
I'm just maintaining right now and as the years go by I don't see it getting better, three years since being sick hit me really hard and I need to stop trying to fake it to get by. No one but Neil and a few people really know what I've been going through lately. I've been to doctors, surgeons, specialists, head shrinks, and I'm tired of them all, but I'm going to keep at it. If you see me and I'm not myself or I seem a bit off, it's just me letting my guard down a little bit and being honest with myself and letting you see what's really going on. Thanks for reading and please understand, sharing this with the world was not easy for me, especially right now, so this is the one time I will ask, if you don't have anything nice to say regarding my deeply personal confessional, please out of respect for me and my family don't say it.
On a lighter note, I'll be posting some more photos soon. The little midget is really damn cute!
This was the last photo in the set, pure despair on his face. I told him that he would grow up in a world where Santa would be detained indefinitely, without trial, as a domestic terrorist. 
