Taelor

Taelor had cancer and I had to have have him put to sleep on 10 Aug 2017, a day shy of 5 months after Tom died.

~Jendy

Caregiver? Originally published 6/6/2017

I got a phone call today about my needs. I'm hoping this means a step in the right direction towards getting a caregiver again. I qualify for 39 hours a month or 9 hours a week. It would be nice if I get one.

I'm still waiting to hear about a power scooter...

.....

Now its 6/27/2017 @00:04

I got a call yesterday from a potential caregiver, only to be told she got hired by someone else. Oh well, I'll be meeting a different caregiver on Thursday at about 13:00. She is only available from 9-11.

Also on Thursday, I will get a visual field test at 10:40, so before the meeting with the new potential caregiver.

I got my power scooter 2 weeks ago and I'm loving it.

I'm very tired now, so time for sleep...

~Jendy

Writing by EJ Douglas

‎EJ Douglas‎ to

May 23 at 8:16am · 

I wrote this for a friend who needed to know her worth and so did her potential suitor. Only after did I realize that it can apply to nearly every woman I know....

She is as strong as the winds of a hurricane.
Do not try to contain her, she will slip through your fingers.
She is as fragile as the wings of a spun glass fairy.
Do not try to hold her too tightly, she will break.
She is as fierce as a mother bear protecting her cubs.
Do not try to rule her. She will cut you to shreds.
She is as beautiful as the heavens.
Do not be jealous, she will turn her back on you.
She is as loving and passionate as Aphrodite herself
Do not mistake this for weakness, she can destroy you with a glance.
Her heart has known more pain and sorrow than you will understand in 10,000 lifetimes
And more joy and happiness than you will understand in 10,000 more.
She keeps it locked away, more secure than Davey Jones locker.
If you truly love her, patience will guide you there and trust is the only key.
-EJD

Thanks sister from another mister. I love this and see a some of myself in this even if I'm not the person you wrote it for. <3 font="">

Thinking about Tom and ...

A friend posted in his journal about suicide and the voice in his head telling him to do it. Tom told me that he had a voice in HIS head telling him to kill himself.

Cancer beat him to that, unless he overdosed on morphine when trying to reduce the pain from the cancer.

Either way, I found him dead in my bed on March 11, 2017. I had gotten up that morning to let the dog out and thought to let Tom rest as long as he needed to. But, I got a movie in the mail that Tom said he liked to watch and put it on the bed next to him

Tom's birthday

Last night, April 28 2017, Brandon and I went out for dinner to honor Tom's birthday. We both raised our drink glasses to him.

I'm still locked in the fog that makes it a bit more difficult to get things done. A common occurance that happens when someone's partner dies.

I'm going to the celebration of his life tonight. He has touched the hearts of many people.

A new assessment

I'm going to be assessed again on May 5th... *insert eye roll here*

There aren't any available in my area, but my case manager is going to assess me again. But hopefully I'll be getting my power scooter in the next month or so and that will help.

Tom's Battle...

Tom lost his battle against cancer on 11 March 2017. That was the day he was going to contact the doctor about  going forward with Death With Dignity, but it turned out he didn't need to.

I found a movie that made me think of Tom, it's called The Danish Girl.  It reminds me of Tom in the way that he told me that he felt like he was a woman in a male body. Kind of like I feel like I'm a man in a female body.

Here's a little something I found online...

The tragic true story behind The Danish Girl

Einar Wegener would kill himself in the spring. He had chosen a date – May 1, 1930 – after a year spent in torment. The cause of his suffering was quite simple: he was sure he was a woman, born into the wrong body. Or perhaps it was more complicated: sometimes Wegener, whose life is soon to be portrayed on film by the Oscar-winning British actor Eddie Redmayne in The Danish Girl, felt he was two people in the same body, each fighting for supremacy. 

One was a Danish landscape painter, a steadfast man who, in his own words, “could withstand storms”. He was married to a woman whose strength and talent matched, or perhaps even surpassed, his own: Gerda Wegener, a successful Art Deco illustrator who produced portraits of fashionable women for magazines such as Vogue and La Vie Parisienne.

The other shared none of these qualities. Lili Elbe was, as she set down in letters and notes for an autobiography, a “thoughtless, flighty, very superficially-minded woman”, prone to fits of weeping and barely able to speak in front of powerful men. But despite her womanly defects, by February 1930 she was becoming too powerful for Wegener to resist. “I am finished,” he wrote at the time. “Lili has known this for a long time. That’s how matters stand. And consequently she rebels more vigorously every day.”

I'm mad at myself for forgetting what female name he said he wanted if he got the surgery. I wish I had written it down.

Tom's decline

Tom has stopped chemo treatment after discussing it with his oncologist, the chemo was only extending his life with no chance for remission. He was experiencing neuropathy in his hands and feet because of the chemo treatment and it stopped when he stopped treatment.

He only has weeks left and has been making plans for what to do with his remains.

I love him so very much, but seeing him suffer is hard on me and I told him I didn't  want him to extend his life if it only made him miserable. He's ready to let go and I'm willing to let him die on his own terms.

I wonder if this is what I'd need to finally get a caregiver... that's too high a price to pay.

Power Scooter

I finally had an appointment with the wheelchair specialist at PT today. YAY!! I expressed my interest in a power scooter. They asked the all the pertinent questions, had me drive a power chair so he could see that I was capable of driving something with a joystick, though the scooter I want uses a tiller, which I'm familiar with.

Now to wait the approximate 2 months before I get it. My insurance needs to approve it, then order it. It should get to me shortly after my birthday at the end of March. lol  

Revised parenting plan

3 October 2016

I will need to get a hearing about the new parenting plan and primary custody of Nicolas and child support if Steven doesn't respond by 25 October 2016.

This was done and I was granted primary custody of Nicolas on 21 November 2016.

Assessment

I had my assessment for getting caregivers today, 14 Nov 2016. It looks like I will qualify. I'll be finding out more later today.

I'll text Justin and let him know what I know so far.

Court date

I have a court date for finalizing the new parenting plan. It's 21 November 2016, just 20 days from now.

I'll only be getting $50/mo for child support.

Cancer

Tom sees the oncologist today, hopefully he'll learn how they think he should treat the esophageal and liver cancers.

He's very fatigued and swallowing food is a challenge. He's already lost about 25-30 lbs.

I'm very concerned for him and don't feel that 5 years together is a long enough time. We'll be celebrating 5 years on November 13th 2016.

I'll be by him each step of the way.

Another Fall

I fell yesterday 26 July 2016 and skinned my left knee. I think  this makes 3 falls in the month of July. I'll have to check my book. Yes 3 falls this month, 1 inside, 2 outside.

I need to make a phone call about getting a caregiver.

Dangit, I fell 7/27/2016

I fell at about 1:30 this morning. I skidded across the floor, between the love seat and the dog crate. I got a rug burn on the palm of my right hand, plus I landed on my water cup. I may end up with a bruise on my abdomen, near one of my incision scars.

I need to get some sleep now.

Jendy

PrEP

Pre-Exposure Prophylaxis, PrEP

I started taking Truvada 11 July 2016 to make sure I don't contract HIV from my primary partner, Thomas.

He gets frequent blood tests and his viral load is undectable. Taking truvada is another step to make sure I don't get it, in addition to using condoms.

Writing it down...

I've thought I was a boy for a long time, I didn't like wearing skirts or dresses. I wore them when I thought it was expected of me, since I was assigned female at birth, or AFAB.

I started growing breasts and felt like my body was betraying me. Then I started my period at age 12, more body betrayal.

I tried to be like most girls, but I ended up feeling like I'm acting in a play. It just didn't feel like the real me.

I had 3 children, the first 2 were 2 years apart, the baby is 8 and 10 years younger than his half brothers.

A few years later, Chaz Bono came out as transgender and it clicked. I'm not a tomboy, I'm transgender. I didn't come out to my mom until Caitlyn Jenner publicly came out as transgender. I came out publicly on my Facebook page.

In the beginning one needed to see a therapist to get things done legally and now that isn't required and Medicaid will cover hormones and some other things.

I only want hormones and top surgery. I'll be calling Planned Parenthood tomorrow because they will help transgender people.

Nick's summer vacation 2016

Nicolas comes back to Washington on 12 June 2016. Flying in to Seattle from Denver, on Frontier flight 137, arriving at 11:09.

I have missed him so much.

Nicolas' grand adventure...

Nicolas decided to move to Nebraska and live with his father for 17 months. What drew him most was the thought of snow in the winter. There was still snow when he got there, but was all gone the next day.

The deal was that he would move there around 26 February 2016 and move back to Washington in 2017 if he didn't like it, with visits in between. He'll be back in WA from 20 June 2016 to 15 August 2015 for summer vacation, then a week of winter vacation.

I talked to him on 21 March 2016 and he isn't liking it.

... to be continued

In home caregivers

I had my assessment for getting an in-home caregiver on Wednesday March 9th, only to get a call letting me know that they thought I was too adaptable, or something like that, as if I didn't need help around my home. I might be somewhat adaptable, but that doesn't help me change the sheets on my bed after I had night sweats the previous night.

Sure I live in a one level apartment, but that doesn't mean I don't need help with housework. Vacuuming tires me out, even when I don't move the furniture to get the dog hair that is hiding under it, that tires me out even faster. That dog hair is still under the furniture, probably organising a takeover, after the carpet adopts a personality of its own.

Standing in one spot for 10 minutes or more can render my legs unusable, the muscles lock up and act like I don't remember how to walk anymore, they don't want to move properly. This makes it harder for me to actually cook meals. I'm too poor to order food delivered.

When I get over heated or stressed, I can end up with ataxia, my legs make it look like someone put the wrong sized legs on me, or like they were out on the wrong way. One time I had ataxia and my Mom said it looked like I was trying to walk with someone else's legs.

I see my significant other on the weekends, the days when he's not working at his job. The rest of the time, I'm home alone and have to rely on the bus if I needed to go anywhere. This is difficult for me in bad weather or when I need to go to one of the cities that are 15 miles away from where I live.

Coordinating the time I must leave my house so I can catch the buses for the connecting routes. What used to take me less than an hour back when I still drove could take me better than 3 hours either direction. It's exhausting.

I trip when walking in my apartment, especially when I'm tired. I lose coordination when I'm too warm, tired, or sitting for too long. My feet don't always go where I want them to, sometimes they want to sightsee as I walk down the hall. Not good when I pass the back wheel of my rollator and my foot gives it a kiss as I pass. Down I'd go.

Once, I was crossing the street on my way to the nearest bus stop and my foot or walker hit a rock and all forward motion stopped. I fell in the middle of the street, in front of oncoming traffic. I was mortified!

Does this, sound like someone who doesn't need any help?

I also need help with folding laundry. I'm a little shorter than 5' 1", I have a king size bed. Folding the sheets is a nightmare for me. The edges are longer than I am tall. Remember me mentioning night sweats?  My body doesn't care that Tom was here a day or two ago and won't be back for 4-5 more days. I'm not a Princess, but I'm not a fan of sleeping on stinky, crunchy sheets either.

I can take the dirty sheets off the bed, but putting clean ones on are more than I can do by myself. Sleeping on the naked mattress pad isn't my idea of a good time.

Did you forget that I'm living alone, with my dog 4 to 5 days a week? Taelor isn't much help in the houskeeping department, he just helps with getting things dirty/messy.

I have a load of laundry in the washing machine, I'd better get it started before it starts to stink (wet towels).

~ Jendie