Tag Archives: Confusion

HOW MUCH LONGER?

I grow more tired every single day. My Dad grows more difficult to deal with each day. The pain medication mixed with anti-anxiety medication has changed his personality even more.

I find myself jumping at his voice and trying to make myself invisible when he’s around. I cringe when he slams doors and growls at the smallest things. I know he’s in pain but none of this is helping me.

Where are my siblings? My brother is somewhere in the state but I haven’t heard from him in at least 8 months. He never called to wish my Dad a Happy 75th Birthday in June and he hasn’t been by to get his mail.

My twin sister didn’t call my Dad on his birthday either. She called after his birthday or said she would. We are having a tough time. I need help with my Dad and she refuses. She lives 10 minutes away and doesn’t work. She did say that her “Mono” became active again and she had to rest. I then find out that she’s at her mother-in-law’s beach house with the kids going to all these events. Not resting.

My Dad fell out of his truck after dialysis the other day and couldn’t get himself up from the hot pavement in our driveway. I couldn’t hear him yelling my name. He eventually crawled to the door. One arm was covered in blood and missing the skin on his entire bicep. I couldn’t stop crying while I cleaned him up and bandaged everything. Of course he yelled at me to “Quit your crying!”. He’s my Dad, I couldn’t help it.

I can’t watch another parent die. I’m not healthy enough. My last stent exchange didn’t go well. It was done May 20th and I’m still urinating mostly blood (sorry for the over sharing). I also have a lot of pain in my back and pelvis. I know something is wrong but I can’t take care of it right now. My Dad is going for Injection Therapy on his back on the 31st. I have to take him. I hate the hospital he’s having it done at, it’s where my Mom passed away, it’s where I died for a short time when I went into Kidney Failure, and it’s where nurses commented on my mental health in front of me.

I’m tired, lonely, angry, disappointed, and keep wondering why I’m fighting so hard.

People go out of their way not to talk to me. It isn’t because of anything I’ve said or done. It’s because of what I might say or do. And that’s the worst part of all.6fdde65c60ad6b93a59fc21b54fa7621

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FINDING MYSELF

I’m not a religious person. I believe in what I can see and feel. This makes it hard for me to find any real spirituality that fits in with what I believe.

I’ve researched Buddhism, which is okay but I would have to fake a lot of the positive thinking they have going on. I’m not sure my body can do Yoga right now either. Most of their concepts are hard for me to wrap my brain around.

I’ve researched Hinduism which is similar to Buddhism but not.

Paganism which can get a little dicey. My Celtic/Norse heritage which can also be a tough one. Shamanism sounded good so did Wicca but I have too many questions and I’ve never been someone who could “just believe” in anything.

I tend to lean toward the darker side of things. I know it’s unhealthy.

I do believe in animals and love to watch them and their behaviors. My favorite has always been the Wolf.

I also think there is something to the metaphysical properties in gemstones. I can’t dispute the research that’s been done the last 50 years or what’s been found that’s the same across many cultures and beliefs. Amber is has the same meaning and properties to Native Americans as it does to Buddhists. I enjoy working with real gemstones. I’m not talking diamonds. I’m talking amethyst, black onyx, agates, the less expensive ones.

I’m still lost and have no idea what I’m doing. I need purpose. I’m also tired of modern medicine telling me they can’t help me anymore.

My GFR is at 40 and my recent surgery didn’t go well when they changed they my ureteral stents. One became embedded which caused more scar tissue which I can’t afford to have. This means having my stents changed more frequently under anesthesia and having a breathing tube. Of course they couldn’t wake me for 2 hours after the surgery because my twin drove me to the hospital and decided to tell me exactly what she thought of me before I went under the anesthesia. When you have Conversion Disorder that can’t happen. The anesthesiologist was not happy with my sister. He had seen her talking to me before the surgery and he had seen me crying.

It’s been a difficult couple of months. I’m more tired than usual, my neck and hips are killing me and my social anxiety has been at an all time high. I’m used to physical pain so my neck and hips have to be bad for me to complain. I kept working while I had 2 herniated discs in my back with 2 bulging discs above and below each one. The only thing that finally stopped me was when I got stuck on the pavement getting out of my car. They thought I wasn’t showing up until I finally reached my cell phone and told them I was outside on the ground. lol

My Dad is having sciatic nerve pain right now and is the biggest baby I’ve ever seen. He won’t listen to a thing I say even though I’ve been through it all. I had 3 Epidurals, water therapy, a 2 hour IV drip of some cocktail to release the muscle spasms because I was shaped like the letter L and they refused to do surgery because it would cause a domino effect. But he listens to one of his friends who says he was kidnapped by aliens! It’s frustrating.

Other than all of this everything is okay.group-wolves-called_9ee7f18bde1c5374


I AM LOST

A Urologist is a doctor who specializes in the diagnosis and treatment of diseases of the kidneys and urinary system in men and women. They also perform surgery and treat tumors, cysts, and stones.

A Nephrologist is a doctor who specializes in the diagnosis and treatment of diseases of the kidney such as inflammation of the kidney, Chronic Kidney Disease, high blood pressure, and Diabetes. They prepare patients for the reality of dialysis and kidney transplant. They do not do surgery.

Patients with early Chronic Kidney Disease need to be evaluated on a regular basis to prevent complications from nephro toxic drugs, dehydration and low Vitamin D. Many prescription medications need to be adjusted with CKD because they build up in the body’s system.

Common eye problems for people with kidney disease include dry, red, sore eyes that feel gritty. This happens because of impaired blinking and tear formation causing dry eyes. Extra calcium and phosphate can also settle in the eyes causing irritation. Kidney disease can also cause pressure behind the eye making vision blurry. Low blood glucose also causes blurred vision and confusion.

My Glucose levels have been consistently low. My last 3 results from 3/16 to 3/17 were 64, 68, and 67. These were done without fasting so I had breakfast which included sugar, cinnamon, and chocolate and coffee with sugar and Mocha Almond Fudge creamer.

When I’ve gone to Nephrologists they tell me I need a Urologist. Urologists can’t answer my questions and tell me I need a Nephrologist or another specialist.

I asked if changing my stents would help with my fatigue and vision. The Urologist said my stents shouldn’t be the reason I’m tired and have blurred vision. I’m in Stage 3b of Chronic Kidney Disease which CAUSES CONFUSION, FATIGUE, AND CHANGES IN VISION.

No one knows why I have kidney disease and they are not lining up to find out. I can’t get a Primary Care Doctor because I have too many health problems with “unknown” origins. This makes me a “difficult patient” so they refuse to take me. Then the specialists I have complain because I don’t have a Primary Care.

SICK OF IT!

BRAINSTORM

I’ve been thinking about my niece a lot. I want to drive cross country. I’m thinking I should take her with me. I’ve been sober 10 years, I have experience with heroin addicts, I know more than anyone should about mental health, I’ve been where she is, she would be locked in a fast moving vehicle with me, she would have to be responsible for some of the driving, it would give her something to focus on and get her away from a toxic environment, I could leave her in the desert if she gives me trouble (joking kind of), I really feel in my gut this would be good.

No one else in family will think it’s a good idea. I can already imagine all the negative comments. She’s 20, I’m 45, I believe I can honestly help someone I love. I haven’t been allowed to do so for some reason. I don’t know if her mother doesn’t trust me or if it’s something else but it’s better than letting her live on the streets.

I don’t know how you could refuse to let me try to help but kick her out and let her be homeless. Another week where all I did was cry. I heard nothing more about the situation until she overdosed and it made the news. I’m sad and a little angry.

If it is a bad idea let me know. Maybe I’m delusional or grasping at straw.


SHOW ME HOW TO LIVE

I admit I’m afraid. I also admit it’s my own fault. I kept putting it off. I even might of done it on purpose.

The Doctor that changes my ureteral stents wanted to see if I could go a year this time but if I had any problems I should come in sooner. I started having problems around the 6th month. I didn’t call or make an appointment. I ignored the pain, the dizziness, loss of appetite, some swelling in my hands and feet, headaches, change in vision, etc. My Bipolar medications were not working correctly either. I’ve been more than depressed for some time now.

I went online to see exactly when I last had my stents changed. I could also see lab results and notes from surgery while I was there. I wasn’t happy.

When I first went to this Doctor he had to exchange the stents put in by a Doctor that didn’t like me very much. Normally I would think I was being dramatic but I brought my sister with me to 2 of my appointments.

My twin is odd in her own way. She can ignore me and say horrible things but if anyone else does it they better run. She’s gotten physical with a few people on my behalf. Nothing major, she grabbed someone by their lab coat and pushed another person out of the way who wouldn’t let us leave the Hospital.

So when she witnessed how this previous Doctor treated me in his office she wasn’t happy. I wasn’t either. He insulted me in front of the entire team about to operate on me and then told them I was “a difficult patient” and they should be happy I didn’t “bring my guard dog” referring to my sister.

When the Doctor I have now went to change the stents he found the guidewires had advanced up both ureters to both kidneys. On the left side the had crossed over one another. This caused scarring in the ureters.

I also didn’t know my GFR has been declining or that it’s as low as it is. I was told it was 67.

The last three results have been 48, 45, and 40. When it get’s to 30 you’re supposed to start discussing dialysis or transplant.

As far as a kidney transplant goes I highly doubt I would get one. My Dad is on dialysis already and my twin sister has already said no.

If you have a mental illness, have to take specific medications, have a history of alcoholism or drug addiction, have an autoimmune disease, you most likely won’t be considered. I can check all of these boxes.

I have things on a Bucket List left to do. I want to have serious conversation with Dave Navarro. We have a lot in common. There are places I want to see. I would like to see Steven Tyler in concert one more time. I want to spend a day with a pack of wolves. There are so many places I wish I could travel to. Places filled with art, music, food, lights, people, where I can walk around and just take it all in.

 


OLD SONGS, NEW TRIGGERS

My best friend called me the other day. We talked for about an hour and a half. She had heard a song on the radio that I supposedly liked to sing while drinking. At the time of the conversation I couldn’t remember the song or singing it. This isn’t unusual for me because I have blocked out quite a few chunks of time. I know when a song I liked was played and I was drinking I thought I sounded like the singer and would sing very loud, at one time singing over a lead singer’s voice in a cover band. For the record the people in the bar thought my rendition of “Home Sweet Home” was better. This was probably not always the case.

I went on YouTube to look up the band and the song my friend mentioned. It was Steel Heart “I’ll Never Let You Go”. The guy had a set of pipes! I cringed and could only hope I hadn’t tried to hit those notes publicly. I know that I did. YouTube gives other suggestions when you look for a song. Down the rabbit hole I went.

I smelled beer and leather, I started to feel like I was going to throw up, my hands were shaking and I was in a cold sweat. I couldn’t stop it. That night there were dreams that were actually memories of times I didn’t want to remember. In the dream I felt drunk and I didn’t want to feel drunk, I wanted to go home but they wouldn’t let me. There was the usual blood, sweat, tears, and the uncertainty of sex. I’ve been in a deeper depression (if possible) and stuttering more since.

Some Doctors will say that Conversion Disorder patients will recover then have an episode now and then under stress. But for some of us there is no recovery, it’s always there waiting. There are other issues that factor in. If you have another mental illness (Bipolar Disorder) than it’s more difficult to treat. If you did not get help within a certain time frame it’s more difficult to treat and if it presents in a neurological way like tremors or stuttering it’s close to impossible to treat. That doesn’t mean you can’t try but don’t be too disappointed if Therapy and Medication do not work. I’m talking about myself but I am not the only one.

These same factors apply for Bipolar Disorder. There are so many variables that can determine your response or lack of response to treatment. Most people do not understand this and think that you don’t want to get better.

I didn’t wake up one morning and decide that I want to be a non-functioning burden who cries most days and will not have a “normal” life. When I was younger I imagined I would be married by now with my own home and children. Instead I live with my Dad, take 6 medications a day, try to deal with having these issues and a number of very serious health issues. I also take care of my Dad because he’s on dialysis three times a week and 73 years old. I do it because he never gave up on me, even if I’m ready to pass out myself, he comes first. My twin never comes to our house and my older brother drops in once in awhile. My Dad doesn’t visit his grandchildren because in his mind he feels that if my Mom can’t see them then he shouldn’t be able to either. Survivor’s guilt. It was 9 years in February and neither one of us is over it because we witnessed the entire ugly scene. My twin decided to stay home and my brother was in jail.

Today my twin told me that my Dad and I have no empathy for other people. She also said that friends come before family. I kept my mouth shut as usual because I’m tired of fighting with her. I’m pretty much done with the entire family. Even my Dad has been cruel lately. He thinks it’s a competition, who is sicker, I’m not playing the game anymore. He doesn’t realize that he’s 73 and this sick, I’m 44 and as sick as him. There’s a difference. I’m easily influenced by the moods around me. I need to be around positive happy people. Or at least in the sunshine in a warm climate with a pool and a float.

 

 


I THINK WHAT YOU NEED TO DO….

If there is one thing that bothers me more than anything, it’s when someone tells me what they think I need to do to “get better”. What I hear is “you’re not trying hard enough”. I then start to think that people around me are thinking that I don’t want to get better. That doesn’t bother me it breaks me.

I remember a time when my Dad would come home from work and give us “foot rides”. He had to wear steel toed boots to work and he was on his feet for 10 hours a day. He didn’t care how tired he was when he got home, I would wrap myself around one leg and my sister around the other. My Dad would then drag us around the house. After he would give us Rollo’s that he bought from work everyday just for us.

I remember the tire swing he made us in the backyard. I spent a lot of time by myself watching squirrels, chipmunks, butterflies and every other kind of creature while my Dad did yard work. I remember watching my Mom cook and feeling so calm as I watched her hands move.

If anyone thinks that I wouldn’t want those feelings back than they have bigger problems than I do.

Everyone pushes me to go to Group Therapy. What people who have never been to Group Therapy don’t understand is that where I live everyone is put together. Your group could have someone similar to you or a group largely made up of people that can’t function as well. I’ve been to many different Group Meetings in my area. Something scary always happened. Maybe I bring bad luck. The last straw was the man who pulled out a butcher knife and held it to a staff member’s throat. I was standing next to him and was told not to move. It was fun when the S.W.A.T. team showed up pointing their guns at him and me!

Good thing I’ve been peppered sprayed before because that also happened at another Group Therapy session. I wasn’t sprayed I just got the residual effects. So much fun! I think after about Group number 30 I quit. It’s worse when you’re hospitalized. Not only is there mentally ill but they also put you with people who are detoxing. This has happened twice.

Stop telling me what you think I need to do to “get better” and try listening to me or, now I know this idea is out there but how about spending some time with me? Or you could stop ignoring me and judging everything I do and say.

Just a suggestion that will never be seen or heard.

 


How Do You Find The Right Doctors When You’re Confused

Right now I seem to be getting worse and worse. I’ve been through every medication combination, therapy, and a round of ECT. I am at the point where I don’t care anymore.

Physically I’m not so great either. I’m hesitant to go to the Doctor because every single time I do she focuses on my getting a Mammogram and not what I’m telling her. She wasn’t concerned that they couldn’t find my Gallbladder at the Emergency Room and that I’ve had quite a few severe Gallbladder attacks. She wasn’t concerned that my eye Doctor wanted me to see my regular Doctor because of the pressure behind my eyes that she confirmed after 3 different tests isn’t Glaucoma. She isn’t concerned about the swelling in one area of my brain that was supposed to be monitored starting in 2011 and never was. All she’s concerned about is my getting a Mammogram on my nonexistant breasts.

Since I had breast reduction surgery years ago and then lost 135 pounds, I am flat chested. If there was even a rice sized lump I would know. No one in my family has ever had Breast Cancer. Bone Cancer, Prostate Cancer, Cervical Cancer, Lung Cancer, Leukemia, Strokes, Congestive Heart Failure, Gallbladders almost turning to mush, yes to all of these. My mom had Cervical and Lung Cancer but passed away from Congestive Heart Failure. My dad’s brother passed away from Leukemia when he was 9. The Kidney issues are on my dad’s side of the family but there’s no explanation for them.

I’m in Stage 3 Chronic Kidney Disease and have been having some symptoms that I’m a little scared about. At first I thought it was medication related. Now I’m not so sure.

The biggest problem is my Mental Health. My Doctor sucks. I’m too tired to go through what I had to go through just to find a half way decent one.

Then there’s the medical bills I owe.

Everything seems overwhelming. I can’t concentrate and I’m too tired. I know I’m complaining too much and everyone is sick of it. They don’t understand how badly I want to be left alone. No more Doctors, no more anything. I don’t feel any want, need, or urge to do or be anything. Nothing really makes me feel anything anymore except overwhelming sadness or sometimes anger at myself. I used to be able to push through times like this but it’s different now. Something has changed. I wish I knew what it was.

 

 


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