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A Wedding Prep Uplift!

Sunday, 2 April 2017

My wedding dress and shoes arrived Thursday before we left for the ER! (Hey, at least the day wasn’t a total wash.)

The shoes fit and are really comfortable! I haven’t tried on the dress yet as I just haven’t had the spoons. I am not a shoe junkie by any means. Seriously, I wear the same pair of shoes just about day in and day out until they have to be replaced and they are usually sneakers or Birkenstocks. Read more…

Nothing Like a Heart Attack Scare

Sunday, 2 April 2017

Warning, fair amount of cursing ahead…

I have been really out of the loop the last several days because Thursday night into the wee hours of Friday morning we were at the emergency room for me. Chest/arm/shoulder/neck pain, cold sweats, severe nausea, light headed & fatigue that started Wednesday night are what sent me there.

As always this was a time I had to be my best self patient advocate even though I felt like I had been run over by a train. Even though I know a lot of the stuff is in my medical file at the hospital I also know they skim over and miss stuff, important stuff. So as always I am trying to make sure they know the important things when all I really want someone to do it make the damn pain stop.

They did an EKG, drew blood & chest xray. Why do they always try to move the needle when the blood stops flowing into the tube when I told them NOT to before we started? It never works on me & I end up with a nasty bruise/swelling that doesn’t go down for days.

2017-04-02 20.27.08  Thanks for not listening to me phlebotomist…

Once I finally got back to see a doctor he let me know that the tests they had so far all came back ok but they were still waiting on one test. Though he also delivered the good news that he was going to give me something for the nausea & pain. Sweet hallelujah! He asked if I wanted a pill or a shot. Let’s see after hours & hours of pain, the shot DUH… Read more…

Most Days…..

Wednesday, 29 March 2017

Most days….

I am thrilled and grateful to have my program, my tools and a good paradigm to work from.

Then there are the days where I have to do really tough things that mark me as an adult who tries to lead a healthy life. These things can be really uncomfortable to downright painful. In those moments, some days, I wish I got to be like people who don’t have a program and just get to be pissed of at everyone else and blame other people, etc.

In truth, when the dust clears, I will still be glad to have my recovery, the tools, a good base that I work from and I will be thrilled for the opportunity at growth to being a better me.

However, right now, in this moment, in the middle of the sandstorm it hurts. I am tired of getting hit with rocks & crap and I am just tired. I know in the morning I am going to have to start looking at what it is in me that brings me back to this place & how I end up here again. But for tonight, I just have to feel the pain and make peace with it.

Amazingly this really only has to do with food in that all the feelings really made me want to act out…I have managed so far not to. I just mostly needed to share about the fact that some days being self actualized and on a path of growth can be painful as well.

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.