I now know that I am in Stage 3 Chronic Kidney Disease. The Doctor told me I only have 1 good kidney. There isn’t any cure for me because the cause of this is rare. Most people do not usually have both ureters completely obstructed but I do. Lucky me. No one in my family can ever have a normal health problem it always has to be something unusual. I decided to update people on Facebook because that’s usually how I can contact most of my relatives. The best part is not one of them responded. I don’t know why expected differently. I keep banging my head on that same brick wall thinking it will change. It never does.
Tag Archives: Health
I went to the Urology Specialist at Mass General yesterday. It was a complete waste of time. I have never been so disgusted in my life. Even my twin sister was crying and ready to slap a bitch.
The Dr. had no idea why I was there even though all of my info had been sent to her ahead of time. She didn’t know how to work their new computer system. As she has a scan of my kidneys and bladder on the screen where I can see and she can see, she is making noises to herself and comments. Comments like the following “What a mess!, Oh my God!, What is this?”. I was getting nervous at this point.
She said “You have a LOT going on here. The doctors on your case are very good and did everything I would’ve done. You should have a biopsy where they go through your back though.” I asked her if that was something she would do. She said she wouldn’t take over my case without starting from the beginning and re-doing all the tests and biopsies they had already done. I told her Medicare probably wouldn’t cover that because they had already been done and she said I would have to get pre-approval. No mention of the many financial aid programs Mass General offers. Plus if she thought my doctors did everything right why did she have to re-do everything? I never got an answer for that.
She told me I should see a Nephrologist. I asked if I should see one around Mass General? She said it didn’t matter. She didn’t even try to recommend one. At this point I’m crying. I told her I’m tired and in pain and I really would like to know what’s going on. She said “Of course you are I would be too. You’ve been in Kidney Failure twice, your kidneys are not working the way they should, the right one is barely working. You have to get this figured out before more permanent damage is done.” DUH! That’s why I was there!!!
So it was a wasted trip where I’m worse off than I was before. I have no idea where to go for help when no one wants to help me. It’s even worse because it’s interfering with my Bipolar meds and I’m a mess. I don’t know what to do. I feel like giving up but I can’t.
On the Entertainment sites recently they have been making a big deal out of Christian Bale pulling out of a movie due to the weight he would have to gain.
I have watched 20 Christian Bale movies. This is only because he happens to make some brilliant films. The first one I watched was Empire of the Sun. Even then you could tell he was too thin which is what the part called for. This was in 1987. In 2004 his weight plummeted to a dangerous level for The Machinist. Did it work for the movie and make it realistic? Sure. Was it worth the possible damage to his system? I don’t know. In 2005 he had to regain the weight he lost and gain muscle for Batman Begins. In 2006 he had to go back down to play a POW in Rescue Dawn. 2008 he did The Dark Knight and had to get back in shape to play Batman again. The Fighter came out in 2010 where he played an ex-boxer turned drug addict. So once again his weight went way down. Then in 2013 American Hustle was released where he played an overweight con-man and gained 40 pounds.
The movie Mr. Bale dropped out of was a biopic of Enzo Ferrari directed by Michael Mann. The reason he dropped out is he would’ve had to gain a significant amount of weight by spring. He didn’t feel he could do this in a healthy way. So he backed out of the film.
Personally I’m glad he did. Mr. Bale’s weight gain and weight loss through out the years have had to of taken a toll on his body. The heart cannot handle drastic continuous changes in weight. I’m glad he realized this.
Mr. Bale certainly isn’t the only actor/actress that immerses himself in a role and wants to be as realistic as possible. The problem is making it look so easy to gain and lose weight in short periods of time. We all know it isn’t but part of us always looks for that easy way to feel good about ourselves. I know it’s hard to find the right actor for the right part. I just don’t understand why you can’t use a talented heavier actor to play a character that is overweight. You can’t tell me there isn’t anyone talented enough. I happen to love Brendan Gleeson and Ray Winstone. They are not young actors but I can’t think of any younger actors at the moment. I’m sure they are out there.
Giving someone flack because they refuse to compromise their health for a movie is just ridiculous. Wake up people.
P.S. To the woman who gave Mourning Son 1 star and said unnecessary hurtful things about the Documentary, shame on you. One more example of humanities loss of empathy. A man pours out his pain and self destruction and you call it “boring”. His mother was murdered. Are you a robot? Unbelievable.
I went to see my Psychiatrist today. I needed to tell him that my medications were no longer working due to the failure of my kidneys. When he greeted me he asked “So did your Primary Care doctor figure out your Celiac problem?”. I just stared at him. On my last visit I had told him that I had gone into kidney failure in June and almost died. Do these doctors not review their notes before each appointment? I felt so let down and like I didn’t matter enough for him to take the time to really look at me.
The other day I was so off and irritated I grabbed a kitchen knife in front of my father and cut into my wrist. It wasn’t deep I just didn’t had no other way to express my pain. I have not done anything like that in many years. I am picking fights with everyone around me. Sometimes the pain is so great I can’t even cry.
I am so scared I will become my Uncle Jimmy. I will die alone on the streets because my family will be sick of dealing with me. They will bury me where they bury the homeless. No one will be with me when I die. I can’t blame them right now.
My medical bills are mounting. I am told I get too much from Disability for any kind of help. I can’t see how this is true. I have a total of $1700 to my name. I’m trying to change my drug coverage because they changed their plan. They want $90 for 5 pills I take for Bipolar Disorder called Viibryd. 5 single pills. The mood stabilizer is a generic and costs $89. My inhaler is $98. Adderall is $199. I had to stop or cut back on my medications. Even though they are not working correctly some is getting into my system.
The Doctor asked if I needed to be hospitalized today. I told him I couldn’t. I go to Mass General on the 26th and Medicare is already going to be charging a huge amount for that. I can’t afford to be hospitalized. They really don’t do much for you at the Hospital we have here. They monitor you, give you Benedryl, and you do arts and crafts. Not much help for me.
I feel lost and alone. Physically I’m in pain and exhausted. Mentally I’m exhausted and feel hurt and angry all the time. I feel my family isn’t making much of an effort. It could just be me. I want my sister to hug me and say everything is going to be ok. She won’t. I want my mom. The anniversary of her death is coming up and I feel her loss more than ever. She always knew what to do. Now there is no one to comfort me. No one to reassure me that I won’t be alone. I’ve driven them all away.
I am afraid that I have permanently damaged my relationship with my twin sister today. I feel crushed, humiliated, miserable and such pain in my heart.
I’ve been ill with kidney problems and on top of that I got a head cold turning itself into Bronchitis. I’m miserable to say the least. No medications are working. There isn’t much I can take for cold medications. My ears hurt, my face hurts because my sinuses are so swollen and I have a cyst on each side. When the tissue swells it puts pressure on the cysts causing the mother of all sinus headaches. The puppy is keeping me awake all night and the Pomeranian started having seizures last night. If it was up to me I would find another home for the puppy and the Pomeranian would be put to sleep peacefully. She is an older dog and has had these seizures for years. Every time she has one it effects her brain. It’s getting harder to watch. Because of my illnesses the puppy isn’t getting the attention and training he needs. I’m usually with him but too sick to do much.
I was so overwhelmed this morning with the puppy, being sick, the state of the house, my dad, that I called my sister crying. She offered to pick me up and bring me to her house where I could get some rest.
I got to sleep peacefully for a while. When I woke up it was because I had a bad dream. I went downstairs and her husband was on the couch. My sister and I started talking.
She said she was ready to call Social Services on my Dad and I because the house is a health hazard. My brother in law said it needed to be bulldozed. My sister said it was ruined by the dogs and birds and not worth anything anymore. She said it was probably the reason I was so sick.
My brother in law said that I needed to “hear some truths and own up to my part in things”. I needed to “take responsibility for what I failed to do”. He quoted some more stuff I’m pretty sure he learned in AA. When he kept saying I needed to “own it” something snapped. I saw red. I finally said “Just like you’ve owned up to everything in your ONE YEAR of sobriety! I’ve had 7, who the hell are you to tell me to own up to anything?” Then he told me to “Get the FUCK OUT OF MY HOUSE NOW! I MEAN IT! I DON’T CARE HOW SICK YOU ARE GET THE FUCK OUT!” So I said ” You’re nothing but a dry drunk. Don’t threaten me EVER! YOU THINK YOU’RE A BIG MAN? YOU’RE NOTHING!” At this point my sister is between us holding him back. I went and got my stuff from upstairs. When I came downstairs he kind of apologized by saying “I’m sorry I should know better and try to have more sympathy for people LIKE YOU” I said “Thanks. Don’t do me any favors.” I left and started walking home in the rain.
In the last few days I’ve lost 10 pounds. I am now 5’6″ and 120 pounds. Not good. My sister lives 25 minutes away by car. I’m not sure how I thought I was walking home. So I had to call my dad. I told my sister I’m too toxic for her and her family. I don’t want to come between her and her husband. I feel so alone. They will never understand battling Bipolar. How much harder it is when your medications are not working the way they should. When a man comes at you and sets off flashbacks and the panic attack is so bad you think you’re having a heart attack. How Bipolar is worse when you do not get enough sleep. No one wants to hear any of it. They want to talk about cleaning house when I can barely stand up, my hair is falling out at a rapid pace, my arms are skeletal, I can’t open a bottle of pills. But sure let me scrub the entire house, set mouse traps, line the cupboards, disinfect everything, find a place for the puppy that my dad won’t give up, try to get him to get rid of his birds and take care of myself. Easy. No problem.
I’ll miss my nephews the most. I don’t want to hurt anyone else. Until I get better everyone is better off without me for now.
I don’t really wish anyone was a beer. I have Celiac and can’t drink it anyway. Today is one of the few days I’ve thought of drinking again. I won’t because I can’t even handle a cup of coffee and eating Gluten Free Caramels without feeling sick. I do want the pain and guilt to go away.
My sister thinks her easy solution of my moving out is the answer. It isn’t. I’ve never lived anywhere but the house I grew up in. Your problems move with you.
When the Doctor said at my last appointment in FRONT of my father that my Bipolar meds probably had not been working correctly for some time I thought “well duh!”. My father and sister seem to be clueless when it comes to this and it’s pissing me off.
When your kidneys aren’t working and your Bipolar meds aren’t working and you feel tired, have no appetite, are nauseous all the time, and confused it sucks. It sucks more when no one really notices or are so used to you being sick they don’t know when it’s worse. I never want to bother them because I’M ALWAYS SICK. So it get’s to the point where you are near death before anything get’s done.
My father and I are fighting all the time. He wants to give up on life. I’m trying not to. I don’t want him to. I thought when he got older he would travel a little and enjoy life more. Instead he has dialysis 3 times a week and only cares about his pigeons and selling his clocks. I don’t know what to do anymore. I can’t save him. I can’t change him just like he can’t change me. He can’t be mean and intimidating anymore either. I won’t take it. I took it from men when I was younger I won’t do it now.
Neither my sister or father understand how sick I am. I’m a Struggling to Stay Sober Bipolar with Acute Kidney Failure and I’ve stumped some very good Doctors with why my Kidneys keep failing. I also have some rare other conditions. They don’t care. One test said Amyloidosis then another said no, one test said I had Monoclonal Gammopathy a protein in your blood that goes along with Celiac that can cause Kidneys to shut down. The Doctors said even though I test positive for this it isn’t why my kidneys failed. There is also a Neuromuscular dysfunction of my bladder but don’t think that is why either. I have abnormal urination. LOL Is there anything normal about me?
Don’t forget I also have Conversion Disorder. Even though it’s diagnosed more frequently a true case is rare. I happen to be one of those rare true specimens that researchers would like to study and film in the name of science. Of course they would have to set off my Conversion Disorder and make it worse to do this. This would involve aggressive loud men, loud metal, dark corners, loud noises, people arguing, death, etc. Sounds fun right? Then I would stutter to the point of being unable to speak at all. Sometimes I have trouble swallowing. Then my hands tremor and eventually it goes to my legs. The stuttering happens daily.
I don’t want sympathy. I want to be left alone. I want my sister to stop saying she “wants her sister back the way she used to be” because I don’t remember what that is anymore.
I want my father to stop threatening me. I’m all he has and he knows it.
I want everyone to pay attention. Do I look healthy to you??? Then stop thinking or saying I’m lazy. I fell on the kitchen floor this morning from standing too fast. I couldn’t lift myself up. The muscle wasting in my arms is so bad I couldn’t lift any part of me. I was there for 2 hours. Is that something anyone would enjoy? By the way my floors are yellow linoleum in the kitchen, old, probably dirty and hard.
Anyone knows a good Urologist/Nephrologist in Boston let me know. My Doctor’s pride is getting in his way. On one hand he says it’s urgent he find me a Doctor in Boston but then hasn’t contacted me in over a week.
About the Holidays. Most people fight with their families. Some people drink too much and fight with their families. Some people fall off the wagon. If you fall off the wagon don’t let shame or what other people say keep you from trying again. Family? Well, I’ve always believed in family. Lately I’ve come to realize that sometimes they will do you more harm than good. You can still love them but I may have to keep a distance and try to be around more positive environments. If my dad needs me I’ll be there. If my sister needs me it will have to depend on a few things. My brother? Wait, did you know I have an older brother? lol That kind of answers the question.
I watched my mom give away pieces of herself until there was nothing left. Then when she needed support from her family they were nowhere to be found until her funeral. Six brothers and sisters she raised and received nothing in return but heartache. I won’t be like that. She gave the shirt off her back to anyone who needed it. She fed the world. In the end she had nothing left. It sounds selfish but I wish she hadn’t been so giving, she thought by giving she would get love in return. I learned faster it doesn’t work that way.
I have so much to figure out. It’s hard to do when your brain isn’t working right. I’ll give myself until my 43rd birthday on January 11th. No point in doing it now but I do have to make some changes. The one thing standing in my way is fear.
The Kidney Mystery continues! And so does the drama. Where is House when you need him? I have learned recently that I do not make a great patient when I am in pain and the manic side of me kick’s in. I’ll explain.
I had an ultrasound of my bladder and blood work that didn’t come back great. My Doctor sent me for a Nuclear Pyleograph test of me Kidney function and he received the results on Saturday. He called me from his home and told me to go to the Hospital ASAP to get both stents back in because my kidneys were beginning to fail again. His colleague would do it at another Hospital I’d never been to.
I wasn’t happy. My dad wasn’t home and I didn’t know when he would be. It took awhile to get in touch with my sister who was very concerned with the car situation because my nephews had birthday parties and boy scouts. It’s ok my life is draining away there’s nothing like a good 7 year olds birthday party. (Sorry) I’m still cranky.
We arrive at the Hospital and no one knows what the hell we are talking about. They have to call both Doctors and see what’s going on. At this point I haven’t eaten or drank anything all day. Guess what? Cafeteria is closed and they don’t have a Gift Shop. I finally get a room almost 3 hours later which I share with another woman. I have an IV in because they’re forcing fluids but I can’t eat or drink anything. The Doctor on call there was making them do unnecessary tests and I was even more annoyed. The man asked me what a Hematologist was. He was thinking it was a stomach Dr. and kept telling the staff I had kidney stones. I finally yelled at 2 nurses without meaning to. I had enough. I told them I had every scan and biopsy known to man and I didn’t have kidney stones. I do have some GALLSTONES if they were interested but that was it. After the stents go back in my Dr. is referring me to someone in Boston. This Dr. hates giving up but has exhausted all of his options. So the nurses talked about me for awhile and I could’ve cared less because I still wasn’t sleeping.
For some reason they allowed a family in the next room to stay and have an intervention for their elderly father. He wasn’t agreeing. It was going on 2:40 in the morning when I lost my shit. I stumble out to the nurses station, with pole in hand, a little doped up, to tell them whatever that family is trying to get that old man to do he ain’t doing it and could they please shut up because my back hurts and I have a head ache. I then told them I drank for 20 years I know what surrender sounds like and that isn’t it. I’ve been listening to them since 5:00 p.m. with no give. Just to be honest I was assuming that’s what they were doing for all I know he wouldn’t do Chemo or something. But then all of a sudden the door opens and 15 people come out of the room like clowns from a clown car, including the F*cking Father! They are all smiling and saying goodbye! It was a WTF! moment. I didn’t imagine it because my roommate commented on it the next day.
Anyway I did really well with the anesthesia this time. There was no crying! I was kind of talking too much and laughing at my own wittiness but I’ll take that over wanting to be put back under any day! They did really well. The Hospital itself was super clean and I liked the Dr. that did the operation.
My roommate had been there over a month. She had been in a coma. Her crack addicted husband had left her for someone else. She started drinking herself to death. She is also Bipolar. She hasn’t been diagnosed long and it didn’t take her long to put herself in a coma. My one regret is that I didn’t talk to her more.
What I did do is give her the name of my Dr. because he is one of the better ones in figuring out the medication part. I also gave her some sober options because she had mentioned having problems with meetings. And I gave her some online resources. She likes to bake and do puzzle type things so I gave her places to go for that. Occupying your mind is a big part of staying sober and with Bipolar. My sister kept trying to pull me away while I was doing this. I was having none of this. She likes to pretend I was never at that point in my life when I was lower. I didn’t have a coma to stop me from going lower. Sometimes I wish I had. I hope the woman I met can go forward, it’s harder when your not diagnosed until late and you’ve had so much happen. She has family. I hope it’s enough.
Me? I’ll be shipping off to Boston. (Sorry brother in law for stealing from the competitors) Wait it would be good to steal from them right? Scratch that stealing is bad any way you look at it and I never ever do it except a Snoopy eraser when I was 5 and my mom made me return it. Just a little manic.
I went to the Urologist today. I went alone. I was 10 minutes late so they punished me by making me wait 2 hours. I overheard this while making out the check to pay them. What was I going to do? I needed to see him. He was polite but told me things were not looking good. He had taken out my stent on the left side of my ureter. I knew something was wrong because feet had been swelling and I had been feeling sick. I was right. My creatinine levels had gone back up. Normal levels should be a 1.0 to a 1.3 and I was at a 2.0. Still no way near when my kidneys failed. I was at 10.71 when that happened. But this means 3 more procedures to find out why. I’ve already had 4 biopsies and several other procedures with no answers. I hate telling my family. At this point they have lost their empathy, sympathy, whatever.
No one knows I’m getting worse all around. I just want to sleep. I don’t care about anything anymore. I don’t make jewelry anymore, I don’t take pictures anymore. I sit on the couch and pretend I have not been crying. No one likes it when I cry. I get reprimanded. Or they ask me if I need to go to the “Hospital”. Why? They don’t do anything for you there. You stay there for a few days, take your meds with some Benadryl, and do arts and crafts. That’s it. There’s no therapy or Dr. to talk to.
My appointment today made me late for my Primary Care Doctor. The Urologist’s office kept trying to call her office but couldn’t get a response. I was told I would be dropped as a patient if I didn’t make this appointment. Guess what? I don’t care. She doesn’t want to take Medicare patients anymore and this was her way of weeding them out. Congratulations. I see all specialists so what was she going to do for me?
I hate this time of year. Holidays, the anniversary of my mother’s death, the cold weather. I could do without all of it.
If the people in my life only knew what it took me to wake up. I feel sick all the time. Depressed all the time. I can’t enjoy food, my vision is going in and out, I’m cold all the time. I’m so f*cking tired. Not one person notices that my skin is the same color as a piece of chalk. Or that there is bruising under my eyes. How can they not see it? I’m tired of trying to force people to care. I don’t care. So we’re even I guess.
I had the most interesting doctor’s appointment today. My sister came with me as back up because I have trouble remembering things. My appointment was with the Urologist that can be a little overbearing and I always take what he says the wrong way. Even my sister has heard him through the wall being an ass to an elderly man with prostrate cancer.
When he entered the room he apologized profusely for being late and gave me a hug. He said he loved what I had on. He then said hello to my sister and said how great it was to see her again. We went over what the plan was going to be for my kidney problem. He wanted to take out one of my stents in their office surgical suite but wasn’t sure.
I was trying to explain to him my problem with waking up from anesthesia because of the Conversion Disorder. I was stuttering and getting emotional. It’s embarrassing when this happens. I needed him to be aware so his staff would know. At the hospital they are a little more equipped with dealing with these problems.
My sister was getting annoyed and said “He doesn’t need to know all this.” He actually hugged me again and said ” Look I love you and care about your well being so I do need to know. If you think the hospital is better than we will do that.” I thought I would fall off the chair. My sister looked even more annoyed.
I think she looked annoyed because she was diagnosed with a version of Conversion Disorder that was easily taken care of. Mine may never go away. Her’s was due to being fired from her job, having 2 small children, and her husband’s addiction issues. Mine is caused by multiple traumas. I also have a coexisting condition that makes it harder to treat. She will never understand this.
When at one point she tried to “shush” me, I said “Don’t you dare do that to me”. It didn’t come out clearly like that because of my stutter but she got it. So did the doctor. On the way out I got more hugs from him. When my sister and I got outside we both started laughing. We couldn’t believe the “hugging” and the “I love you’s” during my visit. I told her there was something not quite right with the guy. You never know what you’re going to get. But I’ll take today’s visit over the other ones anytime.
I dislike having my blogs monitored and not posted on specific social media sites. I only write what I see as the truth. I try to be as respectful as I can without continuing my doormat behavior. What I WILL NOT DO is change myself in anyway because I happen to hit on home truths that make people uncomfortable. People have no problem making me uncomfortable without apology.
I’m barely keeping my head above water. I’m grieving, I’m extremely ill physically, and yesterday Catatonia was added to my diagnosis. I having trouble sleeping which was the only time everything shut off. Yesterday I almost said “screw it” and got another dog. But it wouldn’t be fair to my dad or the dog. There is such emptiness I don’t know what to do with it anymore.