My life

[Danya]

Thanks, Jackie!

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A close friend just asked me if I would have skipped GRS if I knew I might be dealing with difficult to treat, chronic pain for the rest of my life. There is a reasonable possibility that I will have to cope with this from here on. For example, I just joined a local support group. The leader has been living with the same pain I'm experiencing for over 20 years.

My friend's question did not bother me. I have spent just about zero time wondering about this, for a number of reasons:

I had no way of knowing that this would happen. All I knew what that it could happen and the risk was small.

Although my gynecologist agrees the nerve damage is surgery-related, it does not help me in any way to waste time pondering the outcomes of other paths that are in the past and, therefore, unchangeable.

Anyway, I am still glad I had gender reassignment surgery. Maybe that makes me even stranger than I suspected! (Please note: this does not mean I am at all happy about the pain. I can learn, and am already on this path, how to cope with it and still lead a happy life. Even if it is more difficult, and perhaps much more restricted, than I had imagned for myself.)

[Mac]

Thanks, Jackie!

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A close friend just asked me if I would have not undergone GRS if I knew I'd be dealing with what may be difficult to treat, chronic pain for the rest of my life. There is a reasonable possibility that I will have to cope with this from here on. For example, I just joined a local support group. The leader has been living with the same pain for over 20 years.

My friend's question did not bother me. I have spent just about zero time wondering about this, for a number of reasons:

I had no way of knowing what that this would happen. All I knew what that it could happen and the risk was small.

Although my gynecologist agrees the nerve damage is surgery-related, it does not help me in any way to waste time pondering the outcomes of other paths that are in the past and, therefore, unchangeable.

Anyway, I am still glad I had gender reassignment surgery. Maybe that makes me even stranger than I suspected! (Please note: this does not mean I am at all happy about the pain. I can learn, and am already on this path, how to cope with it and still lead a happy life. Even if it is one more difficult, and perhaps much more restricted, than I had imagned for myself.)

Good luck with the healing process.

[Danya]

Good luck with the healing process.

Thanks, Mac!

I am experiencing some very gradual reduction in my pain level. Although I'm not sure if this is because I have eliminated all sitting unless I have an appropriate cusshion, or if this is a result of the anti-seizure medicine, or even late-acting steroid injection or a combination of these - I am just happy to know I am improving. I stand all day as I work on the computer and found this is quite comfortable.

Now I stay away from most of the pudendal neuralgia support sites. Members with reasonably successful outcomes tend to leave these groups so you only hear the ongoing stories of pain. While I accept that my pain could last for years, I prefer to focus on a more positive outcome. One blogger wrote that reading the support sites one would conclude that pudendal neuralgia is practically a death sentence (i.e., to career and family life). She further writes that this is not the case.

I see my gynecologist again Monday. I will be certain I discuss pain management with her.

This morning, I had a phone interview with a hiring manager for a permanent position. I continue to actively pursue other permanent jobs.

[Danya]

This is the first day, since I moved back to the Twin Cities, that I have made it past 5 PM without an increase in pain. That increase is typical for pudendal neuralgia. And my pain has been barely noticeable all day. I am thrilled , although I realize I likely have a long way to go before I can sit again without the right cushion and for much time.

I spent 30 minutes driving today, while I sat on my pool noodle cushion. Then I took a leisurely walk at the Mall of Death, er...the Mall of America. There were camellias blooming in the amusment park area, which reminded me of living in the deep South. Walking is good for this type of neuralgia and today it helped.

[gareth19]

Good to hear things are going well for a change. I hope it continues.

[Danya]

Thanks, Gareth19!

Friday wasn't quite as good a day. I'm experimenting with different self-help approaches to see which work the best. Today (Saturday) seems to be developing into a very good day.

[woofpuppy]

I am sorry to hear about the medical complications, I hope you will find relief soon. I will pray for your recovery. Keep looking for the job you deserve. Hope all goes well.

[Danya]

I am sorry to hear about the medical complications, I hope you will find relief soon. I will pray for your recovery. Keep looking for the job you deserve. Hope all goes well.

Hi woofpuppy,

Thanks for your kind words and warm wishes.

When I saw my gynecologist Monday, she commented that 'things' looked much better than when she saw me a month ago. That was good news. She also commented that she expects that, within a few months, I will be able to sit normally again.

I am hopeful that will happen; I'm a little doubtful because she had expected the corticosteroid injection to work. It did not. Partly because of that result, she now thinks the nerve is merely 'irritated.' [It's definitely irritating me!] That is good news, too, although it doesn't change my pain level! The nerve could be entrapped, instead, which would more difficult to manage

She approved of all the self-care stuff I'm doing to help things heal. I'll see her again in a month. She also recommended a physical therapist whom I'll see in late February. Nerve pain can cause muscle spasms, which I've got. The spasms, in turn, can contribute to more nerve pain. We need to break that cycle.

[Danya]

Although I have been applying for many permanent jobs during the time I've been back in Minnesota, I have been relieved not to have been given an offer of employment. I would have taken it, although I really did need to rest. Now, I have the doctor's blessing to interview (which I'd already been doing) and work. I want to find a job ASAP, preferably 'permanent' but at this point I will take contract work. Nothing has changed since I moved to Chicagoland in early 2010. It typically takes longer to find certain types of jobs. And although the Twin Cities continues to have the lowest unemployment rate for major metro areas (now tied with Washington, DC), a recruiter confirmed something I suspected. We are now in a down part of the hiring cycle for business analysts and project managers.

I expect working through a day with pain 'in my ass' ('X' joked that I moved from Chicago to get away from one pain in the ass - him ) while standing nearly all the time will be an adjustment. I also expect that I will manage.

[Danya]

I continue to slowy improve from my pudendal neuralgia/vulvodynia/pelvic floor dysfunction. Over this week, I had three days in a row that were nearly pain free all day. This was a new record! I need to get out to the nearby MOA to walk late in the day, when much of the mob of shoppers has headed for home.

Only about 2 more weeks until my first physical therapy session. Although I've been through PT before, I am actually looking forward to this. It promises to significantly reduce my pain. Promises, promises! I want to get to the point where I can go out on a date without having to stand the whole time.
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I am merely making an observation here, because it impacts me. I have absolutely no wish to start a political discussion. It bothers me that politicians of both US parties seldom mention the plight of the millions of unemployed/underemployed folks when the unemployment rate stands at 8.3%. I have held three jobs, all temporary, since being laid off in mid-2009. By some definitions, this puts me in the ranks of the underemployed even though when I am working it is in my career of "choice." Some articles I read state that this apparent amensia about the ongoing, major unemployment problem is a recent phenomenon. I was thinking this back in 2009. I suspect part of this is an understandable desire of those who have held on to jobs to thank their lucky stars (what, exactly, is a lucky star?? ) that they are 'safe.' In their positions, I would likely feel the same way. The government, though, seems to be sweeping unemployment issues out of sight. Remember, I am just venting. This is NOT something to respond to on this thread.
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Late this morning, I struggled with the fear of never again finding a permanent job. I might have avoided this if I myself had skipped reading one of the few detailed articles on the plight of the long-term unemployed. For my own sanity, I typically skip reading this type of thing. After 2 1/2 years of temporary jobs, seveal moves for work, impossible demands at two of three contract job I've held, etc., etc. - I am intimately familiar with many of the issues. I need to keep my spirits up to find my next job, permanent or not.

Part of my fear was related to having reached the ripe old age of 60. [How did this happen? Family health history had left me wondering if I'd make it this far.] I keep in mind the Workforce Center seminar on "Age As an Advantage." I agree with this. The problem is many employers do not. Many do. I keep in mind that responsible hiring managers are most concerned about a potential employee's contribution to the success of the organization.

Tuesday, I have two interviews for permanent opportunities. One sounds like it is the final interview. The other is an initial phone screen. There are few interviews I have not enjoyed. I do advance preparation, which allows me to be relaxed. I also remember several other things to help convince younger hiring managers that I would be a valuable addition to their organization.

Writing about my fears released them and I feel calm again.
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Overall, my life is good. Over the last 2 1/2 years, I was fortunate to achieve a major life goal.

The 18 months I spent in the Chicago area were, despite some difficulties, a very good time for me. For awhile there with 'X', I was perhaps happier than I'd ever been. I'm glad we remain friends. I still miss the city and all it has to offer. I need to focus on today, though, and how I will make my future even better.

Who knows, I may even interview for that job in far outstate Minnesota. This is a permanent job. I'll talk with the recruiter about it, but for now, I'm probably not ready to abandon the Twin Cities. I have lived in or very close to major cities my entire life. I prefer to continue that.

[butterflyjack]

I'm so glad to hear you're well, Danya...These last few years have been exciting and life-changing for you, to say the least...You're one tough cookie(another idiot phrase)..
smooches m'luv Jackie

[Danya]

Thanks for your kind remarks, Jackie! I'm attempting to find a job arrangement that would eventually allow me to move back to Chicago or somewhere else in the USA. This may yet work. If not, I'm now finding more jobs in my field, and in MPLS/SP, than I can apply for and recruiters are aggressively courting me. In the next few days, I have interviews for three permanent jobs.
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Although I still have pain, cannot sit, and dilating is more difficult (and painful) than it should be, all of these things are improving. Walking is the one exercise I'm allowed to do, and I walk for at least an hour most days. This helps. With the help of a friend and one of my roommates, I constructed a better cushion out of kneeling pads, foam rubber, part of a pool noodle, plywood and duct tape. It is the best cushion I've used, although none will be totally comfortable.

With all these changes for the better, I'm starting to feel back to my 'normal', whatever that is , self. These last few months have been difficult.

I am happy that my hair now hangs slightly below my shoulders and, in front, I can brush it down to my mouth --> I'm still using a wig, but will probably go without it within a few months. Not having the advantages of a natal girl's childhood, I will need help with styling my hair. One roommate told me to just put some kind of thingamajig in my hair. I had no clue what she was talking about!

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As a T, straight member of LGBTAQI..... I am excited by recent gay marriage progress in California, Washington state and New Jersey. This is all gratifying because in days gone by, I was an advocate for these rights through work with the NGLTF and with a very effective church-related rights group. My role was not large, but these events and others make my realize how important individual participation really is.

[Mac]

Hope you are successful in being accepted for one which interests you.

[Danya]

Thanks, Mac.
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This is truly one of the most difficult times of my life. I wrote an email to a friend about feelings I have been wrestling with tonight. What I needed to write was too personal for this site. Writting out my feelings was all I needed to feel calm again. So there was no need to bother my friend; I did not send the email but saved the draft.

Most of the time, I am doing well and feel upbeat. Occasionally, though, I struggle as I continue to deal with pain, feelings of loss related to leaving Chicago and unemployment. The last is the most difficult, after 2 1/2 years of multiple jobs followed by stretches of down time. Missing Chicago is of lesser concern, but still bothersome. The pain I am working through

I have three jobs that I am under active consideration for and there are more on the horizon. I never give up, and know that something good will happen soon.

[Danya]

At the suggestion of my physical therapist, I joined a health club so that I can exercise in their pool. Before walking/swimming in the pool, I needed a swim suit. I shopped around looking for a bargain. This was the first time I had really looked at women's swim suits as something I would wear. I've never needed one before. Initially, I was surprised at how skimpy they are and thought 'you've got to be kidding'. I finally found one I liked at about the least expensive price around.

This morning, I made it to the pool and had a great time. With my pelvic floor dysfunction, I'm not allowed to do the breaststroke. It's the only way I can swim reasonably well. I managed to do a few laps using my arms alone. During the rest of my pool time, I walked in the water and did leg raises.

After my pool workout, I sat in the whirlpool. I left the club very relaxed but also very wet. I did not know I needed to bring my own towel! Fortunately, our unseasonably warm winter is continuing and the outside temperature is close to 60 F.

Getting out helped relieve some of my cabin fever. Not being able to sit keeps me at home most of the day. When I must drive, I use my custom made cusion but it is not comfortable. The important thing is it elevates my sensitive area so it does not touch the seat surface.

With a sunny, warm day ahead I will drive to the Minnesota Landscape Arboretum to walk. I may also find some early spring flowers to photograph.

I've been to two sessions with my physiscal therapist. I think her work and my exercises are starting to help. Like my gynecologist, she has worked with trans women before. Several had the same pain symptoms as me.