"Where there is creativity, there is hope." ~ Donna Karan

Tuesday, July 9, 2013


 Even my blogging template and text formatting is saying "Whatever" today. Rad.
Things have been pretty darn crazy around here lately. And by crazy, I mean Alice in Wonderland crazy. Weird things have been happening, and so far doctors are baffled by my strange and unusual symptoms. Nobody knows what to do. My regular GP isn't quite sure what tests to do or even what specialist to refer me to. So I've been going around in circles getting opinion after opinion, and getting nowhere. I'm furiously frustrated, and over it.
For the last six months I've had problems with eye, sinus and teeth pain. It's the teeth pain that's the most troublesome. It's constant. It never, ever stops. I wake up with the pain and I go to sleep with it. Most of the time it's just an annoying dull, background ache in my top teeth, but sometimes an area on one side will start randomly throbbing every now and then. And just to make things more interesting, I occasionally get really, really bad intense, sharp shooting pain in a couple of my teeth for a few minutes. It's like I'm being zapped. I've also suddenly developed sensitivity to cold foods, to boot. It's so weird considering all of these problems have never been an issue before.
In addition to the facial pain (and to make things more confusing and difficult for doctors), I've been experiencing odd sensations in my body. I'm talking waves of tingling down my spine, arms and legs, along with pins and needles in my feet (sometimes hands), and numbness in my tongue. It's nice to know that my body likes to change things up a bit occasionally. I can't say that life with a chronic illness is ever boring!
At first it all started with tingling and numbness in my tongue which didn't alarm me at all. I just thought it was all part of the metallic taste side effect from my medications, but as soon as I started waking up in the night with tingling in my tongue and lips, I thought "No, something isn't right here."
Over the past few months, the same feeling in my tongue has progressed to the previously mentioned body parts. My gut tells me this could be more than just side effects. I know my body and I know that this isn't normal. Trying to convince doctors of this is becoming bloody tiring. Yes, these could just be extremely odd Fibromyalgia symptoms, but considering that my muscle pain has been mostly under control for the last year, I doubt it. It could be Rheumatoid Arthritis acting up, but there is also a possibility that it's something else entirely. Given the seriousness of the medications I'm on, these symptoms need investigating and shouldn't be ignored. Teeth pain that isn't from a dental cause combined with odd sensations in my tongue and feet doesn't bode very well!
It's really, really hard when you have so much going on medically that you don't know what is what. Is this health crisis just some new wacky symptoms emerging from my diagnosed illnesses? Are these symptoms serious side effects from my medications? Is the tingling and numbness connected to the teeth pain? Are the odd sensations just an unfortunate coincidence? Or do I have two different problems causing mayhem at the same time?
Every doctor I've seen tells me something different. I've had one doctor treating me for migraines. Another doctor is very certain that this pain isn't anything more than a tension headache and believes that I shouldn't even be on migraine medication. My dentist is convinced it's sinus problems (even despite me mentioning I've had sinus ruled out), or unlikely neurological. My regular rheumatologist didn't even want to hear about my headaches and was quite happy for me to be a neurologist's problem when this pain could very well be Arthritis complications. I've got one doctor who argues that my medications do not cause headaches, and another agreeing that they do. What's a girl to do?
I've become disillusioned with my medical team and it's a major road block in my recovery. I don't know who to believe anymore, and right now I've lost all trust and faith in my doctors. I take what they say with a grain of salt. I'm so tired of walking out of an appointment feeling more frustrated and more hopeless than what I did walking in. I'm so tired of hearing "I don't know, I haven't seen this before, you're not textbook." I'm angry that there are medical "professionals" who have just fobbed this pain off as anxiety or stress. This pain warrants so much more attention, and I deserve answers. I need doctors who are willing to help me get closer to a solution. There is a reason for this pain. There has to be. One does not simply wake up with a throbbing head one morning and still have no relief six months later without there being something wrong.
I feel like I'm going crazy. None of this makes sense. Where is this pain coming from? I'm ready to give up figuring it out. I'm ready to give up fighting doctors who don't understand just how bad this pain really is. Problem is, I need answers and I need better pain relief. I can't keep living like this. This is all just such a mess. One big, fat, freakin' confusing mess.
I keep going to bed hoping that I'll wake up the next day to find this nightmare over. I keep wishing that this weirdness will magically go away, because I don't want to deal with doctors anymore. I don't want to deal with this pain anymore. I don't want to keep being sent home with no answers and a bunch of pills thrown at me. I am so done with this. I am so damn OVER IT. Like, whatever.
It's gotten to the point where I'm not motivated to do anything now. What's the point of getting out of bed? It's really hard to do things when you have a throbbing head day in and day out. I've now reached a point where I'm so far over this "being sick" thing that I just don't want to deal with it anymore. I just want to stay in bed, pull the covers over my head, curl up in a ball and be like: "YEAH, WHATEVER!"
I just don't care anymore. I do, but I don't. I think if you've been sick as long as I have, you'll understand what I'm saying.
I don't care very much for seeing my specialists anymore. I avoid making appointments as much as possible. It has become a coping mechanism; I'd much rather deal with things on my own now, as I've experienced some pretty poor doctoring as of late. I don't want to see anymore doctors who tell me that this pain is just from anxiety and stress. I'm tired of being brushed off when I consult a new doctor- I can't deal with that right now. It's exhausting, frustrating and emotionally painful.
I've had enough of being told that if I just exercise and go back to work, I'll get better. I'm tired of coming home with another drug that causes more fatigue and not having doctors believe me when I say so. I'm tired of being given false hope. I'm over it. Whatever.
My social life is kaput. Whatever.
I rarely leave the house. Whatever.
I have constant teeth pain that doesn't look like it will ever go away. Whatever.
I'm not enjoying life right now. Whatever.
Instead of getting stronger, I'm getting weaker. Whatever.
I'm going backwards in my recovery. Whatever.
I still can't go back to work. Whatever.
I still can't study. Whatever.
I spend most of my days alone surfing the internet or watching tv. Whatever.
My life is down the toilet. Whatever.
I'm too tired to care SO WHATEVER BODY, YOU WIN.
I've been in this "whatever" mood for quite sometime now. I'm hoping it's just a phase that will eventually pass. Right now though, I don't even want to try and find a new team of doctors because I don't have the energy, and I'm over it. But I know I have to. I can clearly see that I need a new medical team. As much as I don't want to start from the beginning with new specialists, this pain forces me too. I have to keep trying. The pain isn't going away and it's only getting harder to deal with. Some days it gets so bad that I just want to die. This headache is ruining my life and I just want this pain to stop. I want it to stop.
I'm really hoping that a fresh perspective and new approach will help get me out of this "whatever" mood. If that fails me, I'm seriously considering giving up on mainstream medicine altogether and exploring alternative therapies more thoroughly. 
So, that's where I'm at right now. Whatever.
Want to place bets on a diagnosis? (Just kidding.)
On a side note: To match my "whatever" attitude (and to make blogging a little easier), from now on I'm no longer allocating days to set posts. Yep, that means I'm posting whatever, whenever. I know I liked posting craft posts on particular days because there are readers sticking around just for those posts, and there are also readers who just enjoy the written posts, but it's time for me to change things up and try to get my blogging mojo back.



Just me Leah said...

Hugs. I feel you. I have some new symptoms at the moment and they scare the sh*t out of me. I don't go to my doctor unless I'm half dead because here in the UK things tend to be very slow to move, so I just plod along on my own until I HAVE to see a GP. Progressing through the quagmire of slow or useless doctors is hard, and I think it actually takes more out of us than doing nothing, so I can totally understand your feeling 'whatever' about it all.

Aviva said...

I'm sorry -- that just sucks! It just isn't fair when you have extra stuff dumped on a body that was already dealing with plenty!

So please forgive me if you already mentioned in a previous post -- but did the dentist do x-rays to rule out any abscesses? I ask only because mine kept telling me that my tooth pain was from grinding my teeth or clenching my jaw or in my head because my teeth appeared fine on exam. But when she finally did my annual x-rays, it turned out I had an abscess that, now that I'm on the antibiotics to get rid of it, I'm pretty sure was the cause of my tooth/jaw pain. Mine was on the bottom jaw, but I know that if you had an abscess on your upper jaw, it could be mistaken for sinus headaches.

But your docs have probably already ruled that kind of thing out ...

Whatever is going on, I hope things start to get better for you soon.

Rusty Hoe said...

Oh hon I'm so sorry you're in this place. I know it only too well and I understand completely. I'm just over it all at the moment myself. If you ever need to vent I'm here. *hugs*

Miss Chronically Creative said...

Thanks so much for all the kind words. It's a comfort to know that I'm not alone, that there are people who really understand, and that there is hope.

I found a new rheumatologist who decided to do a jaw x-ray. Turns out my jaw is stuffed for some reason. X-ray only showed that my temporomandibular joint doesn't move when I open my mouth. My rheumatologist can't say why. So it's off to another specialist for more tests.

Miss Chronically Creative said...

@Just me Leah- Oh I feel for you so much, I totally understand that feeling. Yes, I so agree! Every doctor I've seen lately has made me feel more hopeless, and I end up walking away feeling more exhausted and frustrated- how is that good for my health! As you've said, I find that when I don't deal with doctors and I just plod along on my own, I'm MUCH happier.

I'm so sorry you have to deal with such a crap health care system- yours sounds a lot worse than mine- so I should be thankful. Hugs right back at ya!

Miss Chronically Creative said...

@Aviva- I thought it would be much easier to get a diagnosis, and I assumed that doctors would take me more seriously given my history of chronic pain. I'm discovering the very opposite. It's a real shame. It breaks my heart knowing that so many people have to deal with this crap. Yes, I've had a couple of OPG's done and my teeth are fine. It's most likely referred pain from my jaw. I've just had a specialised OPG done of my jaw and it was abnormal. I don't know why no one thought to x-ray my jaw when they checked my teeth, but at least I'm on the right path now to hopefully getting this mess sorted.

Miss Chronically Creative said...

@Rusty Hoe- Your comment has given me so much hope. Thanks for helping me feel less alone. It's so nice to know you.


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