Monday chat?

penguin 2Good morning! Mom ended up back in the hospital last night. She is so full of fluid that her left leg was what they call seeping. Seriously though, with it drenching her bed clothes and a towel in two hours, it was more than seeping. I expect her to be home in a day or so. I guess they gave her nitro and lasix last night and they were working their magic.

snowflake cThere’s a bit of difference in between fluid retention with different diseases. CHF (congestive heart failure) often causes excess fluid around the heart and lungs as well as the lower legs. In severe cases, a patient can literally drown in their own fluids. In mom’s case last night, the fluid had no where else to go as it was building up, so it began coming out of the pores in her skin.

In Liver Disease, patients often get ascites, which is fluid building up within the abdominal cavity. This can lead to many things, including heart failure from the fluid pushing against the heart. What I found interesting is that they can actually go in and drain the abdominal fluid. A low sodium diet and medication can help prevent a lot of this.

mittens 1I’ve started the laundry. Two loads so far today. And I’m debating on if I am finally going to dye my hair or not this morning. We have to be out at the school at one o clock. Before that, I need to get Dad up, write out some bills, and make a few phone calls. Ed’s going to need a refill on his medication. He has an appointment on Thursday, tomorrow, Jamey has a neurology appointment for pseudotumor cerebri.

That is when the body makes too much cerebral (brain and spinal) fluid and it presses on the brain behaving like a tumor. Pseudotumor literally means fake tumor.  If that is going on, it would be the second time for him. It can cause permanent blindness by putting pressure on the optic nerve. He does have damage from the first one, mostly in his right eye. It can be caused by injury or in Jamey’s case, medication.

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I hope to hear the results of his blood work today. As I said before, I’m a bit nervous about it. He hasn’t had much luck with medications, and the two newer ones are kinda scary. Once I get a few more things settled down this week, I need to make an appointment to go for the spinal cord stimulator. The FDA just approved a new one that is showing promise for CRPS patients. I hope to be able to discuss it with the doctor.

Obviously, I believe in research for what is going on medically with our family. I like to say that I research absolutely everything, but with three patients, four if you include Dad. It’s all I would be doing. I do try to stay on top of new developments for CRPS and Liver Disease. And I do research all of his prescriptions. Heck, I might end up with the knowledge of a pharmacy tech without the degree.

penguin 1Last week, the principal called for an update on Jamey. I like this principal. He seems extremely fair, but when it comes to Jamey, I tend to be rather leery about motive. It’s been a long hard road for him and the majority of it is hidden behind closed doors outside of what I put out on the internet. I appreciate sincerity. But when it’s been a year or so since anyone has asked about him, despite seeing at least one of us at every football game, I question the sincerity. But in fairness, I still go through times where I don’t handle questions without tearing up.

I just wish that if people really do care about how he is doing, that they just ask. And if it’s just to check up on if he’ll be going back to school and still being an issue for the school district, that they would not pretend to care. I understand that saving a place for him is an issue. I also know that he is legally entitled to a free education until he reaches the age of 21. We have one year from June 24th.

fox 1I am not a hard person to approach. I don’t feel like I am threatening at all. I’m five foot three and sincerely try to be friendly. I have learned how to let people know if I just can’t talk about something right there and then. Believe me, I don’t want to burst into tears on you any more than you want me to. It’s embarrassing and makes me look weak. I have only yelled at one doctor in the entire four years of all of this. (Completely fell apart in front of many people though. It’s embarrassing, I try not to repeat.) I want to teach people about Jamey’s illnesses. I don’t want even one other family running into the issues we have. The only way I can educate people is either this blog, or by learning to talk to people even when it’s uncomfortable. I do draw the line on people asking Ed about things though. He’s fourteen. His job is to be a kid. He deals with so much at home, that when he’s out doing things he enjoys, or if he’s trying to focus on his studies, I want him to have some peace of mind where he can escape it all.

winter owl 1But the tone of this post, one would think I might be nervous about going into a meeting with all of Jamey’s former teachers. I am. It’s the hardest part of the IEP meetings. I have to sit through at least two a year and they all know both boys. I never know if there’s going to be a question about Jamey out of the blue. When I’m out and about in public, there’s always the chance, so I gear up for it. If I don’t feel like talking, I’ve been known just to wave, smile and go on. I can’t do that when I’m seated at a table with six or seven other people whom I have to be civil with. And depending on the question, I never know how I will react. And sometimes, it’s who asks. If it’s someone I haven’t spoken to in a while, I can be general. If it’s someone I don’t trust, it can be overwhelming. And I always feel like I’ve been called to the principals office with these things to begin with.

How do you handle parent/teacher meetings?

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2 thoughts on “Monday chat?

  1. I’m sorry for all those health problems. But I can’t agree more that research and knowledge is power in treating the ailments. Doctors poo-poo it, but we really do have to take our health into our own hands. As for parent teacher meetings, my kids are grown now, but my son had a few IEPs to deal with. I just took a deep breath and tried to have an open attitude. It was hard sometimes. But he’s grown and living on his now and doing great, so there’s a light at the end of the tunnel.

    1. If we relied on his doctors to tell us everything, we would be completely in the dark about a lot of things. Four years ago, I had never even heard of Nonalcoholic Fatty Liver Disease, let alone NASH. Even at the time of his diagnosis, I had no idea what Complex Regional Pain Syndrome was. Or that there was such a thing as a fake brain tumor with a medical name. I know we can’t all know about every disease out there, but the liver disease and CRPS are big ones, and if I can get the word out about them, maybe someday we can say theres actually a cure, or for the liver disease, earlier detection procedures put into place. So many people are told that a fatty liver is normal. Yes we all have fat on our liver, but these diseases put fat inside the liver. It is a big deal, and even medical professionals take it way too lightly.
      The conference went good. And yes I was asked several times about Jamey. I did good though. I’ll have Jamey’s last IEP next month, and only 2 more left for Ed. So not to bad in the grande scheme of things.

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