Failure, Falling & Flight
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…
Your Chronic Illness Education Moment
From ALL of us who have chronic illness to all of you who don’t. Allow me to pass along some helpful words to you that are important.
If you want to suggest a cure to me, please by all that’s holy, do not.
It’s not because we don’t appreciate the thought, and it’s not because we don’t want to get well. We absolutely do want to get well and most of us are working very hard each day to get well. Also, even with all that work, most of us do well to just function.
The truth is, that in all likelihood if you’ve heard of it or tried it, so have we. In some cases, we have been made more sick, not better. This can involve side effects or allergic reactions, to name a couple. It also includes failure, which in and of itself can make us feel even lower than we already do.
If there were something that cured, or even helped alleviate our form of chronic illness, then we’d KNOW. Trust us on this! There is worldwide networking between people with all different chronic illness. If something truly worked, we would KNOW. It’s definitely not for lack of trying.
If, after reading this, you still feel the need to suggest a cure, then so be it. We MAY take what you said and discuss it with our doctor. If you still feel you must, don’t get your feelings hurt if we don’t run out and try whatever you are suggesting.
Taking My Seat
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!
Testing…Can You Hear THIS?
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.
http://www.consumerreports.org/cro/hearing-aids/buy…
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)
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.
~Mags
A New Chapter
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
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 YouCaring.com page listed below.
The site set up for the fund raiser is:
https://www.youcaring.com/HelpMagsHear
To Hear or Not To Hear
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.
I’m Sorry, Can You Repeat That?
This and many other eloquent ways such as “Huh?” & “Wha?” have become very frequent in my lexicon over the last several years and especially the last year. The reason is because I have been having increasingly more difficulty hearing. Sometimes if I am caught unawares in a large group I may just nod & laugh with everyone else rather than be singled out as the one that missed the joke. Usually though, I turn to whoever I am with and say something along the lines of the eloquent phrases listed above.
I have had tinnitus since I was a small child. They would do hearing tests and ask me if I had ringing in my ears. The very literal me (who though of bells ringing or telephones) would say no. Now, had they said “Do you hear a high pitched electronic whine?” I would have said “Fuck yes & it is loud as hell do something about it!” I am a literalist if nothing else when it comes to words and I didn’t realize until I was in my 20s (yes, I can be that thick sometimes) that the noise I hear was what they meant all those times. Moving on…
I finally wrung a referral for a specialist out of my GP about a month ago. Who by the way, acted completely like we hadn’t talked about my failing hearing multiple times since last August and she repeatedly blew me off. Including one of those times being “You only missed 4 on the hearing test we gave you.” My reply: “Yes four out of *EIGHT*! The last time I checked, that was a failing grade!”
Fast forward to today for my appointment with the specialist. They did much more detailed hearing tests. I realized halfway through the tests that I was holding my breath so that my own breathing wouldn’t keep me from hearing the beeps & blips. That was a real slap in the face when I realized what I was doing. I had to consciously make myself breath through the rest of the test. They sent me back out to the waiting room and I was sitting there thinking over what had just happened with my unconsciously trying to compensate to hear. It got me to wondering about other things I do to compensate that I may not be as aware of. Bit of an eye opening pattern of thought I tell ya.
They call me back to see the doctor. She enters the exam room, shakes my hand & introduces herself. She sits down, looks at me and asks me if I was ever exposed to very loud music repeatedly or *explosions*. Yes, she said explosions. I was a little dumbfounded by the explosions part and said no. She proceeded to rattle off a few other things, such as gun fire, hunting and machinery work. I answered yes to the first two. (I started shooting when I was like 3/4. My dad’s an expert marksman and taught all his kids and most of the grand kids to shoot. Back then we didn’t use ear protection, it was the 70’s and most people didn’t; they didn’t know better, like we do now.)
The doctor turns her laptop around to show me the graph of my hearing. She says “Your hearing loss is indicative of exposure to explosions or the like & shooting repeatedly would explain it.” There’s several nifty colored levels to her graph, the top is “Normal Hearing” and the bottom is “Extreme Hearing Loss”. The level just above “Extreme” is “Severe Hearing Loss” & that is where she showed me mine was. She then told me that the only thing they can do is give me hearing aids.
Thanks to a post by a lovely friend several months back and a few subsequent conversations with her at munches & seeing her own hearing aids, I was already thinking about hearing aids. Even then, I discovered today that I had held out some faint hope that it would be not so bad or an easy fix. (Dreams are nice dang it! 🙂 ) On the one hand it was nice to have an explanation. On the other, looking at the realities of the answer was a bit of a tough pill to swallow. I found myself tearing up in the office and trying to remind myself of the positives of this.
The doctor then informed me that she would set me up with a fitting appointment and that they would send home a set with me for two weeks to try out. She also said she wanted me to try with only one hearing aid during that time on each ear and then with both ears. I need them for both ears but she explained that these things are very expensive (and I am not shitting about the *very* part, holy crap!) and that insurance companies didn’t like paying for one much less two of them. She said “I want to tell you now that one hearing aid is better than none if they won’t pay for the two.” (It’s a sad commentary when doctors know up front that you probably won’t get what you need even though you have insurance…just sayin’.)
They set me up for the fitting on May 9th. I left the office & sat in my car for a while much more emotional that I’d have thought I would be. (Eric will happily tell you how I think my emotions are superfluous & ridiculously unhelpful. I think *your* emotions are just fine, it’s mine that need to be excised. lol) I spent the rest of the afternoon trying to digest this and think of all the positive things. Like that I can turn off the closed captioning on Wolf’s beloved television and he won’t have to be subject to them when he doesn’t need them. 🙂 And that I will be able to go to movies again and not be frustrated that I will miss at least 25% of the dialogue. There are SO many positives.
I am a rip the band-aid off kinda person. Band-aid ripped; now can we get on with the application of topical analgesic or new skin? lol
I have discovered that many people aren’t aware of my hearing loss unless they have to interact with me in larger groups (munches, meetings, etc.) or noisy places like bars/restaurants. I of course thought it was more than obvious to everyone and it has been frustrating and very frustrating. Maybe a touch embarrassing but mostly just personally frustrating.
I did realize that my not wanting to talk on the phone much and preferring texting has been in a large part due to this. So if you have been overly annoyed by my lack of willingness to talk on the phone much and texting a lot more I do apologize. I really began to realize today how much of my life this really has affected and it was a lot more than I thought.
I am feeling overwhelmed with all the stuff with my mom lately and now this. Am I scared about this? That my hearing may continue to get worse & eventually hearing aids won’t help? That I will be the one in the room that only her partner can “talk” with because he knows sign language? I surely am! But, I know I will get through it because not going forward isn’t an option for me. I have an amazing family of choice, friends and partner. I know that they/you are all there for me, supportive, loving, caring and glad to send me good energy & strength if I just ask.
So, I am asking…
Compliments, Concerns and Conundrums
So I was talking to a very close friend tonight about why I hate to tell people when I am struggling with something or something is “wrong”. My reaction to their reactions is difficult for me. Many times people’s reactions are something along the lines of “Oh my gosh! I am so sorry!” or “Wow! I am sorry you are suffering so much!” etc.
I think I was really born in the Midwest and somehow switched at birth. I have this severe reticence when it comes to anyone expressing concern in my direction. I want to run and hide, I want to assure the person/people that it’s really ok, there is no reason for them to be distressed on my account. There are plenty of people out there who are really suffering, I am (at least currently) yes experiencing what I consider to be a decent amount of discomfort but I don’t think I am suffering. I was informed by my friend that this is not some zero sum thing that just because there are others suffering more than me doesn’t mean that people can’t care about me.
I guess a lot of it boils down to POV (point of view) for me and the fact that I am a severe literalist. When I think “suffering” I think damn near dying. However, I digress…shocking, I know…
The point of this is about my reaction to the reactions of others. I am distinctly uncomfortable when others are troubled by something that is going on with me. Therefore I tend to not tell people things that are bothersome to most. The people who are very close to me eventually get it out of me. To say I play things close to the vest would be a bit of an understatement. I never realized until last year how true that was actually. I tend to think of myself as kind of an open book honestly. Why? Well, because if you ask me a question about myself I generally will answer it. However, I don’t go around blowing my own horn all the time.
The idea of posting something on here that told intimate details of my life totally weirds me out. I am simultaneously a bit fascinated and weirded out when others can do it.
So, I have finally learned to take compliments with grace. Apparently now I have to learn to figure out how to not run & hide, whether physically, mentally or emotionally when people react to whatever they find out about what is going on with me. headdesk Well, at least life is never boring and there are always new lessons to learn! lol
Tomorrow’s a New Day
I am feeling really alone today.
I woke up alone.
I went into town alone.
I did stuff with a rather large group of people & then a smaller group.
I enjoyed both of those things and I love my friends.
I still feel alone today.
I am going to bed alone.
Some days being alone just sucks & no amount of stuff alleviates that.
The nice thing is that every day is new and I get a new shot tomorrow.
Free Range Brain 