Tag Archives: CKD Stage 3

BUCKET LIST (DIDN’T THINK I WOULD NEED ONE)

For someone who wanted to die for so many years to now feel like there isn’t enough time is strange. I haven’t done a lot of the things I’ve wanted to do. I don’t have insurance so there is no money to bury me. I don’t want my Dad to have to worry about it.

My kidney function has decreased and is one of the reasons I’m having so many problems with my medications. Scans of my brain from years ago were looked at by the team of Doctors I have now. They weren’t able to get them previously. The results were less than good. This was from 8 years ago so I have to have another scan as soon as possible. The previous one worries them because of the swelling in one area, the pressure behind my eyes, the lightning bolt in one area, the extreme loss of grey matter and some white matter. Plus the fact that I did have an infection in my brain at one time.

They were appalled that no one had done more scans. At least I felt better that I wasn’t the only one who thought it was odd.

The mental health part is worse than anything. I go from feeling okay to that 12 foot hole of darkness with a hollow ache in my chest. The feeling of complete hopelessness and that I am insignificant in this World is so overwhelming the only way to get through it is to get in the fetal position in the dark while screaming and sobbing into a towel.

BUCKET LIST

  • Work with Exotic Wildlife at a rescue or rehabilitation center.
  • Spend a day with Wolves.
  • Meet Dave Navarro so I can ask him questions about addiction, mental health, relationships, art, movies, TV, watches, eyebrows, etc.
  • Spend a full day with just my dad and my sister talking about our best memories.

That’s pretty much it. I have an estimated 8 to 10 years if I’m lucky. Somehow I don’t think any of my bucket list will happen. Right now I’m tired and my relationship with my Dad and sister isn’t great. I haven’t kept them informed about the Doctor’s insights. It wouldn’t do any good. I can try to achieve some small things when I can.

Today it’s dark and rainy so I’m not feeling great and just want to sleep. I will try not to because I don’t want to waste any time.


WHY I’M TOO HONEST

I wouldn’t want anyone to go through what I have in my 44 years on this Planet. I talk about my past and my diagnoses as honestly as I can remember in case someone reading recognizes some of these symptoms or behaviors in themselves. No one should have to wait over 20 years to receive a diagnosis. When you’ve had a mental illness that has gone undiagnosed for so long it’s almost impossible to treat.

The team of Doctors I have guess that I started showing signs as early as 10 years old. I wasn’t diagnosed as Bipolar until I was 35/36. They wonder about my earlier years because I started so early using soothing mechanisms. I would rock back and forth in my crib while standing, when I grew a little older I bounced my head on my pillow to fall asleep and bounced my head off of the car’s head rest whenever I was in the car.

I also couldn’t keep myself from bouncing one leg up and down while sitting. I always had to be doing some kind of repetitive motion to calm myself down.

The Doctors also found it odd that I had so many nosebleeds and had to have my nose cauterized 3 times. Finally they took out my adenoids and slowly the nosebleeds stopped. I started having them as a toddler and they didn’t stop until I was about 10 years old.

There are days where I want to donate myself to Science and tell them to scan my entire body and do every test available because I’m tired of living this way.

I have been leaving my sister alone. She eventually sent me a text saying she loved me. I sent her one saying I was frustrated because on good days when I don’t want to talk about mental or physical health but everyday stuff I have no one to talk to.

The response I received was that I should volunteer somewhere it would make me feel better.

Not “Why don’t we get together and talk?” or “I’ll call you and we’ll talk right now” nope I was told I should volunteer somewhere. I guess it’s better than before when she kept telling me to go to Group Therapy to make friends. It wasn’t until she actually attended a few Group meetings that she understood what I was talking about. They put everyone together in the Groups, low functioning, high functioning, Bipolar, Borderline Personality, Schizophrenic all together in the same groups. Some are not even coherent they are so medicated. It took almost 2 years to get my sister to stop with the Group thing.

I don’t know why I keep expecting a different outcome. My dad was sitting on the couch near me, I tried to talk to him and he either couldn’t hear me or was ignoring me. When I finally got his attention and started to talk he fell asleep. It’s hard not to take that personally. I start thinking everything must be true. I don’t belong here, I never did, I don’t belong anywhere. I asked my dad to tell me when he first felt butterflies in his stomach or anxiety or scared. He was having trouble answering. I said “How did you feel when you were told mom had twins?” He said ” I didn’t really care at that time it didn’t matter to me” I thought I would break. My mom didn’t know she was having twins until we came.

Then my dad said “Oh I know I felt butterflies when my Russian Tumblers were up against this other pair of Tumblers and I didn’t think they would win Best In Show”. I’m not sure why I was surprised that he would feel anxious about his birds they almost ruined his marriage, actually they pretty much did. They took his health, they’re the reason he’s on dialysis, and he spends more time with them than anyone or thing.

I really don’t think I can I spend another winter here with my dad and sister. The weather alone depresses me. I need to look for a place that’s affordable, sunny, and has museums or wildlife. I would love a pool too. But I’ll take what I can get. I just don’t think I can do it. I already feel the gloom and doom and it’s only September.


WHO ARE YOU SUPPOSED TO BE?

People say I’m the life of the party

Cause I tell a joke or two

Although I might be laughing loud and hearty

Deep inside I’m blue

So take a good look at my face

You’ll see my smile looks out of place

If you look closer it’s easy to trace

The tracks of my tears

Outside, I’m masquerading

Inside, my hope is fading

If you look closer it’s easy to trace

The tracks of my tears

Smokey Robinson

When you have a twin who does not have a mental illness you get to watch that person have a “normal” life. When your twin was also thin and popular it makes it worse. From the beginning I just wanted her to love me more than anyone else. I thought we were special because we were twins. I thought we were supposed to have a strong bond that would last forever. It turns out I was the only one who felt this way.

W became my sister and was there for me when no one else was. The times I had no choice and had to call my sister I was met with disgust and judgement. I hadn’t been diagnosed yet but I don’t think it was a secret to anyone that something was wrong. It wasn’t a secret to me, I just didn’t want to admit I was like some of my family members. I didn’t want to live in an assisted living community with other mentally ill people and a case manager who could come over any time they wanted to. I didn’t want someone else deciding what I did with my money, where I went, what I put in my body or didn’t put in my body. I had seen it all when I was younger and it was horrendous. My Aunt and Uncle had miserable lives when the State was in control. My Uncle chose to be homeless instead of dealing with them. I don’t blame him.

My twin sister refuses to understand how sick I am. She refuses to see how sick our Dad is. She refuses to see that I’m at a breaking point watching him waste away, being the one he takes his anger out on, and being alone. Yesterday he fell and hit his head. When he came inside it was bleeding a little but he was unsteady on his feet. I made him sit down. He then called the dog by the bird’s name four times even though I told him it was the dog not the bird. He looked at me like I wasn’t there.

I think he’s taking too much Klonopin because he doesn’t know he’s already taken it. I see him popping them like they’re Tic Tacs and it scares me. He’s on a low dose .50 mg but still he doesn’t have functioning kidneys. I tell my sister and she says “Hmm”. Pretty much her response to everything I say.

She only called today to tell me about her 6th vacation. They rented a house in Vermont and they took the kids to see Green Day so the oldest could see his Godfather and the youngest could meet the rest of the band.tear How fun for you and your family. Personally I don’t think it’s a great idea to bring the kids backstage but hey what do I know?

I look and I see a beautiful 44 year old woman with 2 of the most beautiful well behaved loving children I’ve ever been around. A woman with a nice house and a fenced in backyard. A woman with a plethora of friends to talk to or get coffee with. Who between her and her husband have so many contacts they can take 6 vacations in 3 months and not worry about anything else. A woman who graduated college but told me I got all the attention because I f*cked up all the time so no one noticed her achievements.

I remember my mother introducing us at a large family function. She said “This is my daughter D she’s in college and this is my other daughter.” No name and no description. At least she didn’t do what the rest of family the did D is the skinny one and Da is the fat one that’s how you tell them apart.” YOU F*CKING IDIOTS WE ARE FRATERNAL TWINS I HAD BLOND HAIR SHE HAD AUBURN HAIR WE LOOKED NOTHING ALIKE IN THE FACE MAYBE IF YOU WEREN’T SO INBRED YOU’D HAVE HALF A BRAIN TO TELL US APART.

My apologies again there was only that one incidence of inbreeding that I know of and she turned out to be a beautiful and smart woman. Again, that I know of because my Grandmother’s side of the family is difficult to trace and the woman herself was sketchy as hell.

I have so much baggage and family secrets/history it’s like Peaky Blinders/Justified/The Decline of Western Civilization all rolled into one.

I’m trying to say it’s heartbreaking and lonely to know the person who is supposed to be there for you and love you isn’t there. It hurts all the time to be so aware of how my twin feels about me. I miss the one person I could count on and talk to, I could cry for hours and she would just hold me and tell me it would be ok. No one does that anymore. I’m not allowed to cry or I get yelled at. No one just hugs me and says everything will be ok or says they love me no matter what I do or say. I need that now because I’m like Jekyll & Hyde lately and there is no warning. I don’t always remember what I’ve said or done or why you’re mad at me.

P.S.~CVS Changed the Generic Brand of Topamax I take and it’s been like starting over as far as side effects go. I feel pretty horrible.

 


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