See, I have a confession.
I am a perfectionist who is afraid of failure.
How is that possible? Some of you might ask but I know there are going to be many of you who know exactly what I mean. Things have to be perfect or why bother doing them at all, right?
I used to be able to meet perfection (aka control, I mean, isn't that really what it is?) when it was just me and I only had me to account for and me living in my home. But then all hell broke loose and well you know the story...
The other thing is this blog used to be about me and Hubbins and our home. I've realized lately that I'm hesitant to post so much the way I used to. Like this blog became about the kids and their troubles and struggles and basically all about RAD and adoption. When I started blogging, it wasn't about that. Frankly, RAD and adoption and how I feel about the whole thing is just too exhausting.
I know, it's my blog and I can write about what I want to. But I went from writing for me to writing for help and then writing all about the kids and then writing about the kids and my struggles.
I also used to keep a craft blog and a book blog. Those have long been neglected.
Hubbins has been having trouble for months and I've posted nothing about it. It's escalated the last two months and up until the last two weeks he was taking it ok. He's tired and he's breaking down. So am I.
I have no one. I lose all the way around. I take him to the ER with the kids and we will probably get the swine flu. Hell as it is right now, I think I have a cold.
Hubbins will die from the swine flu if he gets it. He can't cough. If it goes into his lungs... I don't want to think about it.
I've called my mother for help because I have no choice. No alternative. She should be arriving tonight and hopefully, Hubbins night will get better and he will make it to his doctor's appointment tomorrow and not the ER tonight.
I just feel like I am breaking and like I can't fix anything right now. I can barely keep myself from being sick to my stomach. I've been carrying this for so long and I just feel like I am breaking.
I'm trying to keep it together. But every time Hubbins autonomic dysreflexia starts I go flying into the bathroom with nausea. It's hard for me to believe there is a God when I see all the pain that Hubbins goes through. He was 10 years old. What could he have done to deserve this?
He calls my name in pain and fear and there is nothing I can do to help him. To make it go away. I try and I try but nothing seems to work. All I can do is watch him in pain. I feel so selfish because I can't take seeing him like that anymore. So selfish because he has to go through it. I would trade him, I would. If I could I would take his pain from him and suffer it myself.
We had an incident with his urologist's nurse. I called the urologist to let him know what was going on (plus the primary doc had suggested it). We didn't receive a call back. Which I understand because our state has a shortage of urologists. That night he spasmed for hours. Practically all night without letting up. Even with spasm meds and pain meds. I called at 8 am to update his status.
Meanwhile, I decided we needed to look for a new urologist. We had initially sat down with the urologist and he seemed to have an understanding of Hubbins condition. He said that he could tell Hubbins knew what his body was telling him. He said he would take Hubbins seriously basically. That was almost 2 years ago.
Last year, we ran into this problem with the urologist's nurse not giving him full information. He apologized and said it wouldn't happen again. I feel like it has. Especially after the call we got from the office.
But first, I called all 13 urologists in his insurance book and they no longer take his insurance. I called his insurance and they tried to give me the same urologists. I spoke to his caseworker, who was paranoid about the situation and ended up calling the urologist, paranoid and made things worse or something.
We get a call at 2pm from the urologist's nurse. She asks questions, then she says she is going to call back. When she calls back, she asks more questions. See, she doesn't get what quadriplegia is or something because she goes on and on about how Hubbins hasn't been to see the doc in 2 years. Um, yeah because we can't get into his office it's inaccessible. The first time we went to his office, he shut the office door and we met in the waiting room. The doc himself said we couldn't get back there. Hubbins said that maybe he has to go to the other office so the doc can see him, she argued that the other offices were smaller. This AFTER Hubs had to explain he was in a chair. AFTER she was told he was a quad. The other thing, he's treated Hubbins for at least 2 UTI's since. Just out of office.
Then she says that the doc wants her to tell us that he has a very busy practice and can't always get to patients immediately. I explained to her that we had sat down with the doctor and that he said he understood the situation. She cut me off and said "you left a message at 1 pm, yesterday, correct?" I said "yes".
She said it hadn't even been 24 hours. I told her she must not have got my message I left from this morning because in that message I explained how the situation had turned to worse. What makes me think she's talking out of her ass is that her next sentence was that the doctor had only given her the message to return an hour prior. I think she was mad because the caseworker called and I don't know who he talked to there. The caseworker still hasn't returned my call so I can find out what happened. I'm only giving you half of it because I realize this is long.
So she actually had the balls to say that Hubbins had meds for his blood pressure and said he doesn't like to take them.
In actuality, this is what happens in a nutshell. Hubbins starts spasming, this causes autonomic dysrelexia, so his body thinks something serious is happening and kicks into overdrive. This causes his blood pressure to shoot up. That night it was over 200. We have to find and fix the problem ASAP so that his blood pressure will come back down. During the time that it's up, Hubbins can have a stroke and die.
I literally cry when I have to get the f'ing blood pressure machine out because it scares me so bad.
If we can't fix that problem, we have to give him a med that helps to control his blood pressure by lowering it. Problem with that is we give him the med and continue to try to fix the problem. Once and if we get that resolved his blood pressure will regulate but in the meantime the meds are already lowering his blood pressure. So then he has low blood pressure and he feels like he's passing out.
Would you want to take the meds or have your doc help you solve the problem?
So we have no urologist. All I can do is wish and hope that the primary doc will figure it's something that doesn't require a urologist.
I'm trying to keep it together. But my hands are ice cold , my face is on fire and my stomach is in knots. When we first moved here, before Hubbins insurance kicked in, he got a UTI. We thought it would be ok, because when the insurance did kick in, I called immediately to make an appointment with a urologist. We had to wait three months for that appointment. It was a week or two before the appointment, when the UTI went septic. Hubbins ended up in ICU and he almost died. I can't forget that. We were alone then too. But we didn't have the kids to worry about.
I think that's why I am so wound up about this. Since then, I have had no peace about Hubbins. I wake up when I don't hear him snoring. I freak out about any little thing. It makes me wonder about our kids because isn't this what hyper vigilance is all about?
It's too much.
PS. I made an appointment with the current urologist and am still trying to find one that will take his insurance. I will still keep the appointment with this urologist because I am going to find out the truth and let him know what's what. Ya know?
