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Unruly Body Tuesday

Tuesday, 28 March 2017

Well if I am honest that’s more like an every day thing. Today was weird because I felt like I was on speed and going 1000mph. However my pulse was normal and I wouldn’t have said no to a nap. So the brain is going bonkers but the body can’t back it up….nothing new there!

Went to see my doctor for my quarterly check up for the OCD meds. She wants me to see the cardiologist as soon as I am back on insurance to check on the panic attacks. She isn’t saying that it is cardio related but since we can’t pin the panic attacks to any triggering events or other stimuli she wants me check out since symptoms can be similar. NONE of the usual things I do to decrease or stop the panic attacks work, up to and including my emergency, last ditch meds (though those do dull it a bit some of the time). Read more…

Failure, Falling & Flight

Wednesday, 22 March 2017

Over half of my life I lived in fear of failure; fear of failing others, at tasks, myself and at life in general. Some of this has to do with having OCD, which is an anxiety disorder. Then there is the portion of that which stems from the way that I grew up and I was conditioned by my family structure to not fail. Failure was met with derision, mockery and sometimes more physical means of correction.

I have spent years working on both the OCD management around fear of failure and overcoming the familial and social conditioning associated with it. The OCD isn’t going anywhere until they find a cure, probably not in my lifetime, so I work to manage it through, medication, therapy, structure and various other means. However, the familial and social conditioning I have a LOT more control over. I know that not everyone believes you can overcome those things and that’s ok. For myself I do believe I can overcome them and grow from them. I believe this because over the last 20 years I have proven that to be true in my life.

Still today when I feel I have let someone I care about down or have “failed” them I get a sick feeling in the pit of my stomach, the anxiety rockets and I feel like they are going to condemn or attack me. The difference today is that I usually recognize that pretty quickly  and then take steps to mitigate it. Some of those steps are: Read more…

Taking My Seat

Saturday, 18 June 2016

        There is something I have been pushing to the back of my consciousness for a while due to health and life stuff. The massacre in Orlando this past weekend forced me to look at it head on. Hearing the news Monday morning threw me completely off the rails and I shut down for several days. (We had been out of town and off all media so were unaware on Sunday.)

        I finally started to get back on the tracks and I just keep tearing up and trying to sort things out in my head/heart. I am crying now trying to write this and have to keep stopping.

        I know I don’t get out a lot to events in general and even fewer LGBT focused events, so people form perceptions. I also know that many see me as straight because I am with a male partner now. The truth is I am a member of the LGBT community and have been my whole life; even when it wasn’t always safe for me to say so. I don’t need to justify my place in the community but I realized of late I feel like I do. I know much of that is perception and not necessarily fact. This horrific event has made me face that I feel the lack of being a physical part of my LGBT family on a regular basis.

        My partner doesn’t keep me from going to events, if anything he encourages me. I often feel out of place at events held in bars because of being in recovery. I am not worried about drinking, it’s just not my favorite environment any more. No judgement at all and I support everyone’s right to party as they like! 😉 I haven’t been able to make it to Pride in so long I don’t even remember how long, due to health and life miasma.

        Even though I am often not there in person I am there in spirit every damned time any of us come together. My heart is in Orlando broken into a million pieces right now. I don’t want to talk about guns, religion or legislation. There will be time for all of that very soon. Right now I just want to cradle the souls of the departed loves, brothers, sisters, children, spouses, partners, friends, fathers and mothers to help ease their passing and give comfort to those left behind. I can only do that be sending my heart there in its shattered state so there are enough pieces for everyone I hope. One day I hope we will never have to share this kind of grief again. One day I hope we can be safe anywhere in this world no matter who we love, what we believe and who we are.

        So even though you don’t see me out at events, etc. very often I haven’t left. I am still here. I am still standing beside you, supporting you, loving you and grieving with you. Until we finally see the day where there is no more persecution and senseless murder because of who we are I am fighting with you to help make that day come sooner rather than later!

Pulse Ribbon

Testing…Can You Hear THIS?

Friday, 25 March 2016

I have been reclusive a lot this for what I thought was only this last year for a variety of reasons. I didn’t realize until I came here to post that it had been much longer. It started off as just life being busy, things going well. Then it became health stuff, work stress, juggling health stuff, followed by loss of a job then compounded by more health stuff and financial struggles because of lack of job. All of this was driving home the final nail in the coffin of my writing that had been on its death bed for quite some time.

I made a post recently on Facebook and it was noted by a few friends, who have known me many years, that they were quite surprised to see me share so openly about my Lupus diagnosis online. While it is true that I tend to be normally a very private person in the more “public” realm this is not necessarily true when one on one and I feel my sharing can help. I am working a different paradigm these days in regard to my invisible illness struggles.

While I may not share details of my relationships/daily heartaches etc. publicly or often, I think that talking about issues of this nature; my Lupus, hearing loss, OCD, PTSD, etc. is vital. It may be the only other time someone else who is struggling resonates. If I can help one other soul who is struggling to see the light or hear the music in this world I will keep sharing the hard and painful stuff.

Ok then, on with it…

Those close to me know that this past year has marked a great increase in my difficulty hearing and comprehending what is being said to me. I not only have hearing loss I also have severe tinnitus. I have tried to manage, accommodate and work around it but it has only helped a minuscule amount. It has gotten so bad that it has kept me often feeling very isolated even in a room bustling with people. I was at a much needed OA conference about a month ago that I was fighting breaking down into tears at because I couldn’t understand what the people right next to me were saying at a lunch. I felt completely isolated in a room of 70-80 people who I was there to connect with. This wasn’t the first time. It took everything in me to not lose it right there. I was stunned to be told that the person with me noted the look on my face and was heartbroken.

So, I went a week ago to see if there is anything they can do. I started crying in front of the new audiologist and my doctor trying to tell them why I was there and about the last straw at the conference. Hell, every time I have tried to talk about this to anyone I tear up! (Side note: I hate crying; I hate crying more in public in front of people who don’t really know me.) While my previous hearing aid was a vast improvement it was not enough especially without having the 2nd needed one. To be completely honest, I did not have great hopes when I made the appointment. My doctor reminded me that she said one was better than none when it came to my need for hearing aids at the time but she didn’t mean that was forever; I still needed two and now more than before.

I was very happy to be proven wrong; it turns out there is something. The tech has leaped forward in the last 3+ years and thankfully the price has come down about $1100. This makes the pair $5900 instead of $7k (Not great since insurance still won’t pay anything but any reduction is good in my book!) I currently have a loaner pair through next week and the difference is stunning! I am completely blown away by the difference in the advances in just 4 years. I still have to test them in noisy environments and sweat my butt off while wearing them (the old ones shorted out every time I would sweat even a little, which was a common problem for a lot of folks apparently). The Nano coating on the new ones should stop the shorting problem but if not there is now another fix for that; two now actually! I would probably want to do both for extra protection knowing me. 😉

I want to learn how to lobby for insurance company regulations to change so that they have to provide hearing assistance as necessary for all, not optional. We have dental and vision insurance now, while still elective in most cases you can at least get; which were both once considered optional as hearing aids are now.

I am starting my research once again and hoping that options for assistance have changed for the better in the last 3+ years as well. I know insurance hasn’t, already checked that. Sadly, over the counter amplifiers will not work for my type of hearing issues, though our poor budget sure wishes they did! lol Thanks to all who have suggested them though. 🙂

Below is a great video and article about how difficult it actually is to find the right hearing aid for each person and why it is important to go to an otologist (doctor who specializes in the ear and its diseases) and audiologist (healthcare provider who is trained in evaluation of hearing function and rehabilitation of patients with hearing impairments-including but certainly not limited to hearing aids) and be properly tested and fitted for them. There are many factors to consider when purchasing these outside of just the cost. Much as someone who needs a prosthesis for a limb would be accounting for many factors outside of cost.…

I am putting pics of what the little buggers look like by themselves and in action below. (I never thought about how hard it would be to take pics of my own ears. lol)

Hearing Aids
H.A. In Action                      See Me Now

Let me know if you have questions, experiences to share or whatever. Let’s get real and meaningful conversations going about the challenges we face and overcoming them! 🙂

Today I am hopeful and tearily grateful to know that things can get better and I don’t have to keep falling further into the chaotic babble of sound and confused isolation.


A New Chapter

Tuesday, 9 February 2016

8 February 2016

I have been putting off talking about this since September 2015. I have sat down to write this 3 different times. Dealing with my left knee replacement surgery and recovery was enough to juggle it felt like. So I shelved it really until I could realistically digest another thing. I’ve been rather reclusive the last several years this is one of the main reasons why, though I didn’t get the official diagnosis until last September. A very few closest to me knew already but I haven’t shared it publicly until recently. Mostly because I haven’t had time to really digest it myself. I guess it’s time; New Year, new book of life and all.

Just a few days before my surgery at the end of September 2015 I received the diagnosis of Lupus (Systemic lupus erythematosus or SLE). Part of me was relieved because they finally had an explanation for so much stuff. The other part of me was like “Crap! Seriously?” We had been chasing the rabbit for over a year and a half of trying to figure out what has been going on with my body for the last 3 years. They will re-test in June to confirm the diagnosis but that’s pretty much just a formality at this point. From what I know of Lupus through my own research and having known several people who have it this piece of the puzzle seems to fit with the symptoms I have been experiencing.

I do not want another chronic illness. But, it is what it is and I WILL persevere damn it! I will find a way to surmount this and live my life, be active and healthy as possible! I’ve had a few months in the dumps about it and now it’s time to move forward. Most people have heard me talk about the “Spoon Theory”. If you aren’t familiar with it, the concept is to help people who have chronic illness explain energy levels to those who may struggle to understand how those with chronic illness struggle to get through each day at times. Life is a lot about allotting spoons the best way possible these days. I can have a couple kick ass days and then spend the rest of the week wondering how to move around the house to get the basics done.

I have been fortunate to find a wonderful rheumatologist that is a straight shooter and on top of things 100%. She sent me for all manner of diagnostic testing and pre-medication testing so that there is a benchmark to refer to as we go forward. A week after my knee replacement surgery she started me on a medicine to help prevent organ deterioration: Plaquinil. There are other meds to manage flare ups etc. but apparently Plaquinil is the only game in town to try and slow Lupus down at this time. Thankfully I haven’t had any adverse reactions to the drug thus far. Which considering my track record for having awful side effects, is a much welcome miracle since there’s no other drug to replace it.

So, please be patient with me if I don’t reach out as much as previously, we make plans and I am struggling or have to cancel. It is NOT personal. It is just because I am working toward what normal is now and how to make that the best oddball normal that fits me. 😉 I try to be as cognizant as possible about my spoon allotment and management but there are days I just don’t get it right.

Love to you all.

Hears To A Better Tomorrow

Tuesday, 14 May 2013

You guys said we should do a fund raiser when I posted last week about my hearing aids in To Hear or Not To Hear.  

A new friend found a great website for it.

With some prodding & good talking to about why I should, I was convinced that I should do it.  (Asking for help is not a major strong suit of mine.)

I am, as always, in complete awe of the amazing people in my life.  You guys are wonderful and supportive to me in so many ways that have not a damned thing to do with money & I am ever so grateful every day for each & every one of you!

People have asked me if they can share my story to help raise the money needed for the hearing aids. Yes, you may share my story as I have shared it in the posts I have made here.  I also shared a little bit about it on the page listed below.

The site set up for the fund raiser is:

To Hear or Not To Hear

Tuesday, 14 May 2013

That is the question.

So, I should have my tired butt in the bed but that isn’t going to happen until I get some of this last week & today out of my head.  I meant to write a follow up post to my previous post I’m Sorry, Can You Repeat That? last week but life sped up to warp speed & that didn’t happen. So I am going to get around to that now. 🙂

So, I was supposed to go tomorrow to get fitted for my hearing aids. A nifty thing happened last week and they had a cancellation & were able to get me in late in the day on Tuesday April 30th.  I was excited because this meant that I would have them to go to a retreat and would hopefully be able to hear better while there!  

I went in & the doctor set me up with a pair of amazing hearing aids. Then she told me how much the set I was most likely going to need cost. I almost gave them back to her right then and said “Thank you but I cannot afford them & I don’t want to know what it’s like to hear if I can’t afford them.”  But the truth deep in my heart was that I *did* want to know.  So I let her set them up, turn them on & put them in my ears.  I about went through the roof when I reached over to pick up my glass of water with ice in it. It sounded like shattering glass!  While we talked, several sounds made me jump & we laughed about it. She said it was normal and that I was going to hear a lot of things that I hadn’t for a long time.  Boy was THAT an understatement!

Long story short, I had to go back the very next day to have them turn them down several decibels so I didn’t feel like I was getting spun around by every little noise.  That helped immensely!  

I struggled mightily with the hearing aids over the weekend of the retreat, ending up with a very severe migraine Friday night & was very ill from it. Everyone was so helpful, checking on me, helping where they could, taking over my team for me.  I was and am so grateful.  

Monday morning I called the audiologist to tell them what had happened & that I was only using one hearing aid because I was afraid to try both due to the migraines. She said I did the right thing & to stay with one until my follow up today.  The good new is that she made some  adjustments today that we hope will help and she has me back in both of them.  I need both and she really stressed that to me again today.  I went the rest of the day in both and so far so good.

Now the not so good part.  My insurance will not pay a single cent for the hearing aids. To top that off I was denied the $7,000 credit for them (yes, that is how much they actually cost…I was speechless when she told me initially). Honestly, even if I had gotten the credit I could not have afforded the monthly payments for it as they are ridiculously high….think car payment high ($600).  

Every time I think of having to give them back in two weeks I start to cry.  I didn’t know how much I couldn’t hear until I *could HEAR*.  I am startled by things that I know most people take for granted.  I didn’t realize how much I missed birds singing early in the morning, because the sounds of their songs had slowly slipped away from me.  I thought that there just weren’t as many birds around my house any more…  

I don’t know what Plan B is, but it’s time for it.  I am going to check out some of the suggestions given to me in my previous post.  Whiskey & Eric are doing some research as well.  I am trying to not think about having to give back the hearing aids but knowing it is a distinct possibility it is at the edge all the time and it makes me literally nauseous.  

I want to stay open, willing, accepting & grateful.