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Re: Chronic Illnesses/Invisible Illnesses
Posted: Thu Apr 02, 2015 2:59 pm
by Vesca
I could live without coffee... mostly. But tea? Tea is like my life-blood. I've had 3 cups today and I've only been awake for 3 hours!
Re: Chronic Illnesses/Invisible Illnesses
Posted: Thu Apr 02, 2015 3:59 pm
by Firebird
I know...it was very hard, especially at first, I had a headache and could NOT get going in the a.m. But after several weeks it got a little better. I had other stuff with the wheat giving me a headache to really tell what was causing it definitively. When you have a heart rhythm problem though, caffeine is one of the first things to go.
Sooooooooooooooooooooooooooooooo glad my tachycardia was fixed, because the taste of decaf made me want to hurl. AND I think it gave me a headache too.
Haha, maybe it was just my brain trying to figure out what the heck am I drinking

..


The other thing is...as Sakura knows is finding good things to eat that are gluten free is hard but so worth it. I was not diagnosed with Celiac, but nonetheless have found a
huge difference in my energy, aches and pains, heartburn and constant haedache.
They are virtually non-existent, since I change my diet in June of last year, and I was on some kind of antacid on and off for 30 years. The last hurdle may be the liquid bread

Though I really love my ale, and haven't' really noticed the effects be the same as eating bread was...ouch.
BB, Firebird
Re: Chronic Illnesses/Invisible Illnesses
Posted: Fri Apr 03, 2015 6:24 pm
by SnowCat
A teaspoon of apple cider or malt vinegar in a couple of ounces of water can be helpful with heartburn. We make less stomach acid as we get older, so adding just a bit of acid to the system revs the digestion.
Snow
Re: Chronic Illnesses/Invisible Illnesses
Posted: Tue Jul 07, 2015 1:11 pm
by keria
This is so informative and helpful. Plus I love the comments on coffee! ;-P
I couldn't live without it!
My husband has all the problems. Celiac disease, narcolepsy, and he has a small tumor on his pituitary that prevents his body from producing testosterone; which of course causes lots of problems not just ED but chronic lethargy, sleeping problems (probably what causes the narcolepsy) but also not being able to sleep, and headaches. Caffeine helps the headaches some but not always. Injectable testosterone works best but is expensive and dr visits with required blood work every three months without health insurance is not possible so I am trying to get together a healing spell catered specifically to him. I know some of the herbs I need to order but it's so hard to do when your on a budget.... We just usually deal with his symptoms day by day with no relief because of the cost.
Re: Chronic Illnesses/Invisible Illnesses
Posted: Tue Jul 07, 2015 1:33 pm
by Vesca
We used to have to navigate the health system for a chronic illness for a couple years. Not fun, especially when they just wanted to keep running expensive tests and we just wanted the darn prescription refilled. We spent an average of $200 a month on medical bills and prescriptions and I only brought home about $600 after taxes for the two of us.
This was before Obamacare and before health insurance became mandatory.
Anywho, have you been able to find any low-income medical networks? That's the only way we could hope to afford his bills, even though it was still gouging my income.
I wish I had better advice, but there really is no winning when it comes to chronic illnesses.
Re: Chronic Illnesses/Invisible Illnesses
Posted: Tue Jul 07, 2015 2:23 pm
by keria
He is the only one working at the moment and when we applied for the obamacare stuff we were found exempt because we are low income. So that was no help at all lol. We really don't do anything right now till I find a job. I'm a vet tech and I've been looking for a year and a half. Nothing closer than an hour and a half drive can I find....:-/
Re: Chronic Illnesses/Invisible Illnesses
Posted: Tue Jul 07, 2015 3:21 pm
by Adiens
My friend, who has POTS as well, told me about this website
http://www.peoplespharmacy.com/. She said it helped her with pharmaceutical costs, and it's designed for low-income families/individuals. However, I under stand the pangs of not being able to offered insurance. Many of my friends and my significant other cannot afford what has become a luxury in the states :/
As far as invisible diseases go, I was actually combating mine when this thread was started. I have bipolar/depression/anxiety. My bipolar had gotten really bad that I ended up seeking help at the hospital. I was having quite a horrible depressive episode.
Also my significant other suffers from chronic depression and agoraphobia so I more than understand invisible illnesses.
Love and healing energy to you all

Re: Chronic Illnesses/Invisible Illnesses
Posted: Tue Jul 07, 2015 4:20 pm
by Vesca
He is the only one working at the moment and when we applied for the obamacare stuff we were found exempt because we are low income. So that was no help at all lol. We really don't do anything right now till I find a job. I'm a vet tech and I've been looking for a year and a half. Nothing closer than an hour and a half drive can I find....:-/
I don't really understand this Obamacare thing. You're exempt, as in they refuse to cover you, because you're low income? Doesn't that kind of defeat the purpose of this whole thing...? Gahh politics.
I assumed from your introduction post that you were already working as a vet tech, apologies. I need to stop assuming things.
Hopefully something comes your way soon regarding health insurance and work though! In the meantime, we have this thread and if you discover any other tips and tricks by all means feel free to share!
Re: Chronic Illnesses/Invisible Illnesses
Posted: Sat Jul 11, 2015 3:41 pm
by SnowCat
This is so informative and helpful. Plus I love the comments on coffee! ;-P
I couldn't live without it!
My husband has all the problems. Celiac disease, narcolepsy, and he has a small tumor on his pituitary that prevents his body from producing testosterone; which of course causes lots of problems not just ED but chronic lethargy, sleeping problems (probably what causes the narcolepsy) but also not being able to sleep, and headaches. Caffeine helps the headaches some but not always. Injectable testosterone works best but is expensive and dr visits with required blood work every three months without health insurance is not possible so I am trying to get together a healing spell catered specifically to him. I know some of the herbs I need to order but it's so hard to do when your on a budget.... We just usually deal with his symptoms day by day with no relief because of the cost.
The pituitary drives the thyroid too. It would be a good idea to demand a complete thyroid workup. Not just TSH, which is the one doctors like to use, but at least t3 and t4 as well. Some of what he's experiencing could be thyroid related.
Snow
Re: Chronic Illnesses / Invisible Illnesses
Posted: Sat Jul 11, 2015 4:11 pm
by Sakura Blossom
I'm really glad you mentioned that, Snow, because anytime they check me for Thyroid issues they only do the TSH. I want to see if they've done anything more because it might be a good idea to look deeper. I was on Lithium since I was six years old and only went off it a few years ago (I think at age 19) so it' be beneficial to fully look.
Also, I'm in a really tough place right now. I gotta try and get a diagnosis of Fibro. I really am hesitant to do so because I've gotten mixed opinions about getting the diagnosis. People tell me not to because doctors will never take me seriously (but they don't anyways, so it's not like that'll really change) then others tell me that it's a good idea to do it because then you can get the actual treatment you need for it.
I just want to know what's wrong with me. :/
Re: Chronic Illnesses / Invisible Illnesses
Posted: Sat Jul 11, 2015 5:21 pm
by SnowCat
Demand that t3 and t4 be checked. T3 is the active hormone that the body uses. To is what the thyroid produces. If you're not converting 4 to 3, your THS will be in range according to the lab work, but functionally, you'll still have hypothyroidism. Numbers mean a lot less than how you feel.
Snow
Re: Chronic Illnesses / Invisible Illnesses
Posted: Sat Jul 11, 2015 5:38 pm
by Sakura Blossom
Thank you! I'm going to look into that and see what I can do. I don't know if I have anything like it but they always wonder if it's my thyroid whenever I bring up symptoms I have. I'm not sure.
Re: Chronic Illnesses / Invisible Illnesses
Posted: Sun Aug 02, 2015 7:39 pm
by bastetsha
This is a comforting thread. I have a few invisible illnesses. I have really bad social phobia (trying to use this forum to help that

), GAD, PTSD, major depression, paranoid schizophrenia (have to be real careful with religion because of this illness), and disassociation problems. Medication helps but it is tough because most of my extended family doesn't talk to me because of the schizophrenia but hey, I am better off without them. Anyway, religion has been a blessing and a curse with my illnesses. I tried really hard to be in the religion of my family but it caused great anxiety issues and nightmares so I have been on the path with Bast for a while.

Re: Chronic Illnesses / Invisible Illnesses
Posted: Sun Aug 02, 2015 8:14 pm
by Sakura Blossom
bastetsha - I think it's wonderful you're not letting a diagnosis such as Paranoid Schizophrenia interfere with your wish to follow this path. As I struggle with mental illness myself (though not schizophrenia I am a bit versed in that as well) I fully understand how it can be difficult to work with certain aspects because it may "trigger" some unwanted side effects. The fact that you're aware of this already shows that you're doing a wonderful job in managing your symptoms and not letting the illness rule your life. There's no reason why you shouldn't follow the path you love because of something that you have. Mental illness or any illness doesn't define anyone nor should it rule someone's life. (: This makes me very happy to see~
And your positive attitude about your family as well. It's a very important lesson to learn when you deal with something like this. Too much stigma surrounds mental illness these days. ): It's very upsetting but having a positive attitude will help immensely.
Re: Chronic Illnesses / Invisible Illnesses
Posted: Sun Aug 02, 2015 8:15 pm
by SnowCat
On the subject of dismissive doctors, I had a real doozy for my shoulder surgery. I have major problems coming out of general anesthesia. I had explained this to the surgeon, who agreed that we should avoid intubation and gas. Along comes the anesthesiologist who insists that he's going to stick a tube down my throat and give me gas because that's the way it's done and the reaction I described is normal. I threw a tantrum and told him I refused to go through hell again. Every time I have that level of anesthesia the reaction is worse. One of these days I just won't wake up. I wouldn't shut up until he agreed to no intubation and no gas. I wasn't completely panicked and disoriented when I woke up.
SnowCat