Happy Memorial Day

Let's remember to thank our vets and soldiers for their duties they do, regardless of the hardship. Let's also remember that many of these soldiers are coming back with tinnitus. So many soldiers come home with that horrendous ringing, crackeling, buzzing, from shooting without adequate ear protection. So let's not only thank a soldier, let's push for not only ourselves but for these soldiers to get closer to a cure for tinnitus!

I should be doing ebay

I took pictures today, uploaded them, intending to put my listings on, but I have only put 1 listing on. My tinnitus is really bad today, so much so that I can't focus enough to sit and put my listings on. You would think the incentive of money would be enough, especially when we need it so bad. Tinnitus has won today, yet again. Sometimes I get so tired of this damn noise, I seriously want to stab something into my ear.
I will be one (I think) asking for medical marijuana. It may not fix the insomnia or tinnitus, actually it worsens the tinnitus, but it cetainly makes me not give a flip about it for a short time.
I might even try to see Sex And The City sometime this week with a little assistance ;)  I know there is no way I will do it without, because the volume of the theatre and the surround sound really irritates the ear, BUT if I don't "care" about the tinnitus for a short while I may actually enjoy it. I love SATC, I love the clothes, the shoes, the characters and yes even the eye candy of Mr. Big and Aiden.
I have a lot planned this weekend, and hope I feel like doing it all. Sometimes I cancel out because of headache, or just feeling like shit from the tinnitus keeping me up.
I hope everyone has a safe and fun weekend. Please say a prayer for my step son fighting over in Afghanistan.

*sigh*

Bad night last night with tinnitus and NO SLEEP! I also had a regular Dr appointment today to go over my lab work from last week, and apparently I am falling apart. I will now be on cholesterol meds (2) and thyroid meds for the rest of my life. My lab work was so crazy it was almost funny....ALMOST. I have to schedule a thyroid US, carotid US and 2D echo and I guess invest in a daily pill organizer ;)  My eye is really bad today, and Fran lovingly calls me his cockeyed bitch LOL. This is all said in humor, so don't comment about him being mean, he doesn't have a mean bone in his body. I often wonders how he can put up with me since the accident, because most of the time I'm so miserable I can't even stand to be around myself. So that is my day so far and it's only 11:30 AM. I am left to wonder, and probably should have asked the doc if my thyroid could have somehow been caused by the electrical shock I received since I haven't had issues before. I know the cholesterol and triglycerides aren't because they have been high as long as I can remember, they are just so high now that I can no longer ignore it and wish it away.

Do you swag?

I LOVE swagbucks, it's almost an obsession. So here is the deal for those that don't know. You use swagbucks to search random stuff and usually about 3 times a day you get rewarded with swag bucks. You also get them for daily polls, special offers, and referrals. The best part is it is FREE, yes FREE!! I have been doing it for probably 5 weeks or less and have already gotten $50 in amazon $5 gift cards, $5 cokkieskids GC, and $5 Redenvelope GC. I store my amazon GC in my amazon account and am saving them for when I see something I MUST have. Plus come Christmas time they run CRAZY deals (which I will post!). My little widget for swagging is to the right on my blog. Let me talk about referrals. When people sign up under you you get the same points your referral does until they hit 1,000 bucks and then you no longer get the points. I have 2 really awesome referrals who are about to max out, and more that are just getting into the searches. This is my link if anyone is interested. If you sign up, promote your referral on FB, Myspace, your own blog and get your friends swagging! You have nothing to lose and everything to gain, and did I mention IT IS FREE! Happy swagging! Plus it gives me something to do on my many sleepless nights!
http://www.swagbucks.com/refer/donna6167

Wow just Wow

Today I had my weekly psychiatrist visit, and while I was in his waiting room waiting to go in my phone rang, when I answered it it was my nurse case manager. She asked me when my next appointment with Dr. M was and I said it is right now, I'm  waiting to go in. She proceeded to tell me to let him know this would be my last appointment with him and that she has set up another appointment with a different Dr (this was supposed to be just an IME) that I will be seeing June 9, and also said that I will no longer be seeing my ENT since there is nothing he can do. Now I understand about the ENT, because I only see him every 6 weeks and really other then check my ears and be completely empathetic, and so wonderfully supportive and genuinely concerned there really is nothing more he can do. The psychiatrist is a completely different story.
I mean I understand about getting an IME, even though I am seeing the psychiatrist they picked for me, but to completely CHANGE doctors 6 months into treatment??? I have built a patient relationship with Dr M, and although I am struggling emotionally and mentally coming to terms with my tinnitus, I feel comfortable now to discuss things with Dr M. Now, I have to start the process with someone new?

The new and not so improved me

I miss me,and am trying to come to grips with the new me. I've come to rebel against myself. When I discovered I was pregnant 5 years ago I quit smoking cold turkey. Never had the desire to start again. I drank on RARE occasions, didn't do drugs, no piercings other then my ears, no tattoo's etc. I was your average 40 + YO working mom. Then this happens, and I find myself spinning out of control.
My mother always said I always bite off my nose to spite my face, and now I know why.
Within months, because I felt so out of control with my tinnitus, I started smoking. I know that doesn't make sense but it felt like the ONLY thing I had control over at that time. As the tinnitus continued with no relief and I would get comments on my eye, I went from smoking to smoking and drinking. Again, it was about having control of SOMETHING, if I didn't want a cigarette I didn't smoke, if I didn't want that glass of wine I didn't drink it. I was CONTROLLING what I did. Tattoo came next, and this was actually a good thing, because I have wanted one for years anyway.
Everyone had suggested I try marijuana, something I have tried once in my life when I was 17. It made me so sick I never had the desire to try it again, that is until 4/20/10. I was told it would help me sleep, and I was desperate. Well it did NOT help me sleep, not even a little but it DID do something. The tinnitus was still there, still loud BUT for a brief time I didn't care. I wasn't stressing over it, I wasn't focused on the annoyance, I DIDN'T CARE! I have smoked pot 2 times since then and both times I felt the same. If I wasn't so afraid of getting caught doing something illegal, I would do it more often.
So this is the new, not so improved me. At 42 soon to be 43, I have become a smoking, drinking, pot smoking tattooed momma who is not proud, but desperately trying to learn to live with tinnitus.

Any good books?

It's hard to concentrate to be able to read a book, however, I have been looking at these two books at Amazon. I have $25 in my Amazon account thanks to the GC's I won at swagbucks and am trying to decide which one to order. Has anyone read or heard of either? For the record I do get a percentage of orders through my blog BUT I am not asking anyone to purchase these through me I am simply trying to decide which one if any to order.
I have gone from reading 2 books a week, to being lucky if I can finish one in 2 weeks or longer. Because of the concentration issues I find myself going back and rereading what I have already read because I can't remember what I read.
Has anyone read any good books on tinnitus?

UGH I have a major headache

I noticed today that my tinnitus was really acting up today/tonight, which in turn makes me clench my jaw together really tight and of course, this causes a really bad headache that starts at my jaw and goes around my head. It's 1 AM and I have 12 hours until my weekly appointment with my psychiatrist. I feel a little guilty, because I think I have opened up and admitted more here about my feeling of failure, weakness and depression.

It's hard to know others are suffering, but nice to know you are not alone

I added a link to this post that someone was kind enough to leave in my responses. It's hard to hear others are suffering with tinnitus and yet there is a part of you that screams "YES, someone knows what I'm feeling"!
It's hard for people to understand that there is truly something wrong with you when you look "normal". How can you possibly be taken over by this invisible condition. I have heard many times to just get over it, learn to live with it, and suck it up, but the thing is I CAN'T! It has literally taken over my life, it controls my sleep, my moods, my insecurities, my concentration, everything.
Close your eyes and imagine a really awful noise, a loud buzzing, an awful hissing, an annoying crackeling, now imagine having that 24/7 with no let up. Never having a second of quiet. Now imagine yourself trying to live your life that way. I have TRIED to imagine myself getting to a point where I can live with it and get back to my normal life, really I have, I just can't imagine doing it. I WANT to, but this is overwhelming. In all honesty, if it wasn't for my kids Alfonso 21, and Josephine 4.5 I think I would have ended it months ago. I've invisioned putting myself out of my misery many times, but I would never put my kids and family through something like that. It actually puts me in a deeper depression sometimes, because I feel weak and like a failure even thinking about it. When I read the above link I cried, because I know exactly what the person was feeling holding that 9 MM, I know the hopelessness, the helplessness, and the devastation one feels when tinnitus enters your life.
I went to a support group a while back, but honestly listening to people who have been suffering with this for 5, 10, 30 years broke my spirit. I CAN NOT imagine suffering with this condition for the rest of my life. I know it's more then likely I will, but I hold on to that glimmer of hope that one day I will wake up and it will be gone as quickly as it came.
I don't talk much about how I feel, because honestly if you have never experienced this, there are no adequate words to explain it. I have to keep rereading what I type because my concentration is almost non existant.
Ok, I am off to read more of the link I provided and hopefully get some more insight from others who suffer from this. http://www.rnid.org.uk/community/forums/tinnitus/thalamocortical_dysrhythmia_tinnitus/

A shitty morning

Hopefully, what I just cleaned up isn't a sign of a what is in store for today. My dog whom I love dearly, decided that he didn't want to disturb me while I got my hour and a half sleep, and thought he'd be oh so kind and shit on my floor. Which wouldn't have been all that big of a deal; buuuut my daughter accidently stepped in it and proceeded to "wipe" her feet on the rug. *sigh* So my day started with cleaning the hardwood floor (an easy clean up), to scrubbing the carpet in multiple places (not so easy). My dog, Chaz, of course is now laying on my leg looking at me with that look of "man, I've had a rough morning". Josie, of course is off to school, looking as cute as a button in her ponytails.

Oh forgot to mention

The sleep or lack there of isn't the only thing keeping me from working. I can't concentrate, I will delve into this in another post. Maybe later today. or now I want to list the sleep meds that I have tried since this started. Ambien, Ambien CR, Lunesta, (leaves an awful taste in your mouth!) xanax, and now Serequel XR. As you can see by the time of my post, I haven't found anything that works.
My anti depressant is Lexapro 30 MG OD. Some days I think that dose is OK, other days not so much.

Let's talk workman's comp

Ok so I have been unable to work since this happened, and I do mean unable. Workman's comp has been pretty good, although I have to say that lately it is becoming an issue. Let me point out that I am getting 30% less then what I made while on workmen's comp, and I am the only income coming into my house so you can do the math. If I COULD work, I would, honestly I miss my job and my co workers, but I have not mastered the tools of living with tinnitus. I never know when my body will allow me to sleep, it usually happens when it just gives out on me and says enough is enough. For example, I took my newest sleeping pill Serequel XR at 8 PM, it is 3:22 AM and I am still waiting to fall asleep. It's hard to sleep when you have this unending noise keeping you awake.
So my nurse case manager called the other day and said she wants an IME with another Psychiatrist, and that they would be calling soon. That's fine, I have no problem with that, and actually look forward to hopefully having someone else suggesting something new to try that might help me. The problem is, I am sure this will be like my ENT IME, and Neuro IME and I will walk out with no new information or hope. So I wait for the call, and appointment.
Oh, I also got my termination letter from work. Mind you, everyone knew at work long before I found out. I was terminated 4/22/10. I understand that they can't hold my job forever, but a phone call would have been nice. Instead my coworkers knew long before I did. I was a good, no wait an excellent worker, I was emplyee of the month the first month I qualified. I was a super user on our new computer system, I had letters from patients that praised me, I really liked what I was doing. Now I am told that I may have to accept performing at 60, 70 or 80% of what I used to perform. To me that is unacceptable. I KNOW the worker I am and being and giving anything less then 110% is just not acceptable. The thought of it depresses me, literally!
So while most people are sleeping at 3:32 AM, I am here typing WISHING I could sleep. When I finally do fall asleep I am usually awakened within a few hours from the tinnitus.
BTW that thing over there>>>>>>>>> is for Amazon. Occasionally I will find something that I like, or a bargain I want to share and I will put a link to it. Nothing in the box now is anything I have read, used or recommend. I also make a % off the sales, so I wanted to be up front about that. I don't expect anyone to use it, but I figure it doesn't hurt to put it there in case there is something that I can share that someone may want.
Here is my funny or not so funny (for me) for tonight. My birthday is June 1, and I asked my daughter how old does she think I am going to be. Her answer? EIGHTY LMAO, out of the mouths of babes I guess. I will be buying hair dye this week to cover up the grays ;)

Trying something new

So I've decided to blog about my tinnitus (and other things), since I don't think the anti depressants or sleeping pills are making any changes to the situation that has taken over my life. So let me start at the beginning. It was July 16, 2009 and I was at work doing my usual routine of checking my phone messages, email etc. Apparently from what I have been told lightening struck the building, but honestly all I remember is this sharp pain and very loud pop from my headset into my left ear. I immediately threw the headset off, and my co-worker Connie who was sitting in the front of the row on the opposite side of me asked if I was OK. She too got shocked, but hers was through her computer keyboard. I was a bit in shock, I still wasn't sure what happened, I just knew I had this horrendous noise in my ear. Little did I know I was on a long road to trying to learn to live with tinnitus.
I will admit that this condition has left me feeling weak and defeated, and in the beginning dare I say suicidal. Let me first say that tinnitus affects people for different reasons, at different levels, and for different durations. Mine is a constant, very loud crackling in my ear. For the longest time I said it sounded like electrical wires hitting water, but after getting my first tattoo I kind of think it sounds like the instrument that does the tattooing. Imagine NEVER hearing quiet, never having peace, having a constant irritating noise in your "ear". I say "ear" because from what I have been told mine was caused from my brain sending out signals to protect my ear and that the noise is actually from my brain.
I have been to different doctors, have had numerous tests, and no one can give me any answer as to if I will ever be normal again. I have begged for deafness in that ear, only to be told that will not cure it. I was actually told that many ENT doctors believe VanGough was actually a sufferer of tinnitus and that is why he cut off his ear. Since I have had visions of doing that, I tend to think they may be right. So here I am, almost a year later and I am no closer to an answer or a relief then the day it happened.
On top of the tinnitus, I am left with an asymmetrical right eye, which makes me feel like a freak. It seems to be really bad when I am over exhausted, which funny enough is quite often, since I hardly sleep, let alone sleep soundly. Would you, with a constant noise in your ear? I have tried background sound, herbal meds, sleeping pills, I have even worn a masker for hours on end with no relief.
I am depressed, stressed, exhausted and feel like a failure most days. Many people who have no idea what this condition is or does think I should "suck it up", and believe me I wish I could, but at the moment I can't. I see a shrink, but sometimes I feel like I need more then that. I mean how can he know what and how I feel if he himself can't hear what I hear. I want to see a plastic surgeon for my eye, but am also afraid of making it worse. It may not be very noticeable to everyone else, but it certainly is to me. So please be patient, as this blog may sound like one big whine fest, and I promise I will try to infuse it with humor when I find it ;)