Chronic Illnesses / Invisible Illnesses

[Sakura Blossom]

Hey guys!

So, this is not 100% relevant to witchcraft and all that, but I know that some of us on here (like myself) suffer from chronic/invisible illnesses.

I wanted to open up a discussion about this sort of thing and to share ideas of what we do to cope in hopes of helping us heal emotionally by having a support system. We don't have to be all "sadness" all the time either. It helps to have a positive and friendly environment where everyone can talk with others who understand what they're going through and to help spread positive thoughts!

I'm also going to do a little shameless promoting and share my blog that I run in regards to having chronic illness. (:

You can find it here: Living POTSY-Turvy

So, if anyone is willing or wanting to, feel free to share your experiences with this kind of illness and we'll be the support you may need right now. (:

I'll start by sharing that I have something called POTS (Postural Orthostatic Tachycardia Syndrome) and Celiac Disease. These were both recent diagnoses so I'm still working on getting used to it.

Just know that you're not alone. <3

[cataluna49]

I hope this counts! I have GAD (generalized anxiety disorder) and I have dealt with manifestations of it throughout my entire life. It got a lot worse though once I was in college, so I started seeing a counselor on a regular basis about it. After about five or six years I decided to start medication. and I'm very happy with the results so far with it. I have always used lists to help me calm my anxiety, self-talk, and sometimes a nap is just what I need. I exercise regularly (which helps me a ton with keeping my mood up and stable), and I still talk a lot with my boyfriend when I feeling overwhelmed.

[Sakura Blossom]

Of course! Any illness is something you can't see and any illness that lasts for awhile or your lifetime is considered a chronic illness. Mental illness is definitely something that fits in here. (:

That definitely counts. ^_^ I suffer from GAD too. I'm very glad to hear that it's starting to get better! You sound like you've found a really good way to work through it. I really need to work on my anxiety. It's starting to rule my life a little bit but I'm happy to say I've made improvements with my OCD! I've stopped some of my compulsions.

[Firebird]

Hey Sakura,
Good choice for a topic, as I would guess many of us with chronic or even acute illness come to witchcraft seeking a cure or, at the very least relief from their anomalies.
I hadn't heard of POTS before, so after reading up I wondered if the discovery of Celiac and any steps you have taken to improve that have in turn helped the POTS ?
I don't really like to share on my chronic illness, though I would think in order to help others I could share a little
(ha, though I know what a bender I can go on!)
When I was an adolescent in the midst of going from maiden to mother mode, I had terrible PSVT (paroxysmal supraventricular tachycardia )(where my resting heart rate would race to 170+ beats per min) but I could control it with by holding my breath, I didn't know at the time that was called a valsalva maneuver. My mom took me to the Dr. but he mostly blew it off because it was sporadic, said I probably had a Tachycardia and to return if it got worse. However I could always make it stop with the breathing trick, then one day after I was about 19 it just went away and I didn't think about it much.
I had maybe 2 bouts of it within 2 months after giving birth (at 24) and then not at all until I was about 35 I had one. Then when I went into peri- menopause at 45 it started again, but now I couldn't make it stop. I was just leaving after a day at the beach with my husband, stepped into the car and Blam...it started, I panicked and it made it much worse, I figured I was having a heart attack and I would never see my daughter again, I was crying and a worried mess. We went to get the life guard who said he would have to call an ambulance, during the deliberation it stopped, but for about 2 hours I thought it was the end. Then a couple years later it became more frequent and I had many, many trips to the hospital, where they would do a procedure called an Adenosine push. It stops you heart for a second, then it goes back to a normal rhythm. It was terribly scary, and one time they screwed up the push and it made my heart race even faster. Anyway, after many diagnostic tests they thought it best I get a radio-ablation which was done in the cath lab, very interesting procedure... went through a vein in my leg, I could watch them fry little pieces of the electrical pathway in my heart on a monitor. Took around 2 hours. They told me there is a risk of breakthrough (meaning it fails, momentarily or more permanently) I am so happy to report that thus far it has been like the magic cure...in the 6 years since, I have only experienced breakthrough for a few beats a small handful of times since and as terrified as I was to have the operation I am sooooooo glad I did. The other option was drugs for life and that was no guarantee either.
I wondered why this problem coincided with the two big transitions in life that a woman makes. I brought this up with every doctor I saw in the 5 years I was in and out of the hospital and clinics and none of them could pin point a reason, and none thought the changes in life were significant to this problem.
I still think the hormones and the body electric are connected.
If anyone else has had this problem do get checked to make sure it is not the more dangerous ventricular tachycardia.
SVT and PSVT can be dealt with. It feels terrible but is usually isn't deadly.

I have more but not today
Blessed be the amazing heart
Firebird

[Vesca]

Hormones and the nervous system in the body are connected, everything is interconnected. They may have just not known exactly how those connections would have affected your heart rate?

I'm nosy, so if I ask stupid annoying questions feel free to get the water squirt bottle and shoo me off the counter.

Does it hurt when your heart speeds up that fast? Or is it like having a panic attack? And what about the radio-ablation, did that hurt?

I'm always curious about the human body and its functioning (or misfunctioning), but it still makes me a little squeamish and weird when it comes to things like that.

[Sakura Blossom]

Unfortunately there is no clear or direct correlation between POTS and Celiac symptoms that anyone has found so when I treat Celiac, my POTS doesn't get any better. ): I've been looking into it, though, because apparently POTS coincides a lot with GI problems.

That's a lot of terrible things to have been through, FF. I can relate, though. My doctors dismissed me too and it angered me. I don't know if I could make a choice like that as I'd be terrified. D: I'm very glad it's working for you, though, FF! Thank you for sharing, I know it can be tough!

@Vesca: It's really terrifying each time it happens for me. It's just like my heart's pounding in my chest. It's when I get the heart palpitations that freak me out. It's like, for a few seconds, my chest feels empty and then all of a sudden it's heavy again when the heart beats normally. I'm slowly getting used to it now, though, but that doesn't make it any less terrifying.

[Firebird]

I have a feeling much of the health problems people have these days are because of the foods we eat. It's extremely difficult to eat healthy if you can't afford to shop at Whole Foods.
Recently I am avoiding all artificial sugars, but High Fructose corn syrup is in almost everything, so a lot of label reading
I like how most food these days have the common allergens in bold print at the bottom of the ingredients list. Makes it a lot easier to see what is in what.
There are so many food allergies that manifest in all kinds of problems. Finding wheat to be a foe was HUGE, no more headaches, and body aches and chronic heartburn (that was the worst... for 30 years I suffered, ate all kinds of anti-acids, and prescription meds) and all I had to do was cut out wheat

Oh dear Sakura, I read Celiac contributes to POTS and was hoping you had found some relief.
Do you know if the radio ablation is an option for your kind of Tachycardia?
I could vent about dismissive Dr.s all day long..haha, you really have to advocate for yourself or they don't listen.

Vesca...it's ok...and what the hell is wrong with them? hormones and the nervous system...it only makes sense, Right?? Although this problem affects men too so I don't know which hormone would be involved.
In any case the Tachycardia never really hurt either, just uncomfortable and scary as shit, and when they do the Adenosine push you can feel this heat flush your body and taste in your mouth, it's like an internal thud then your heart stops, for a second or two,a flush of cool follows, then boom! it starts again with one real strong hard beat and then it gets better rather quickly and reaches sinus rhythm. The procedure is uncomfortable but it doesn't really hurt.
The radio ablation didn't hurt either, except when they tried to insert the catheter they had to double dose the pain drugs. Ouch! The anesthesiologist told me I was no cheep date...great.... After I had to lie with out bending my leg for 10 hours with a brick or some hard thing on the incision ..that was terrible, esp the bedpan ...bleck. Then the risk of blood clots, but hey! it worked. Had my daughter bring me a coffee and a chocolate right away! (caffeine had been a no no).
BB, FF

[Sakura Blossom]

Yeah, I totally agree about that! I think food contributes to a lot of it! I go grocery shopping again today after having been at my parents and I'll be getting a ton of healthy foods instead. I'm tired of eating processed crap. >.<

Celiac can attribute to it sometimes, yeah! But thankfully my symptoms for Celiac are more or less evening out now but it's not affecting my POTS in any way. ): I wish it'd help.

I don't think that's an option, no, because it doesn't have anything to do with my heart itself. POTS is an autnomic disorder and they're still trying to learn about it. Even if it were, I don't think I'd do it because what I have isn't life threatening. I don't like surgeries at all. >.<

I could complain about the doctors too, but I've since learned now I do have to advocate and I have been... And not just with my doctors either. My disability services at school have really let me down. I have a meeting with them in about a week after having met with the Vice Chancellor because they didn't want to listen to my concerns before. I'm terribly nervous but we'll see how things go.

[Vesca]

Wow, that does sound scary. I don't know if I could go 10 hours of sitting still without caffeine... that in itself sounds like torture.

Thanks for indulging my curiosity. I've only ever had to endure wisdom tooth extraction, physical therapy, a botched blood withdrawal, shingles and a broken toe. So... not really on the same kind of procedural scheme there.

Males have the same hormones we do, just in different proportions. I've found that if doctors are not entirely sure or confident of how the illness/injury fits in with the rest of the bodily processes, or are unsure of what causes it, they don't tend to give any information about it because they simply don't know how to explain it properly. Or maybe that's just my doctors.

It took me 3 different consultations and an mri to get a theory on why my shoulder is so screwy. And even then, it's still a theory (albeit probably the right one, based on my history).

I still can't tell if they simply don't know, or if they don't know all of it, or if they think I won't be able to comprehend what they're saying. My new doctor actually acknowledges that I have a bit of training and will use the real jargon with me about what's going wrong and how it's going to be fixed, but it took me a long time to find one that didn't just treat me like a 2 year old.

[Firebird]

Haha, no, try months and months and months without coffee...decaf just sucks, the deal was no caffeine til it was fixed. I was completly ready for the test as soon as I got out of surgery! That's when my daughter got me coffee, haha at least if something happened, I was still in the hispital. The challenge was drinking it thru a straw, because I could not sit. Had to lie flat without bending my leg for 10 hours.
And chocolate ummmm, what a way to recover

[Vesca]

Whaaatt??!! No coffee for MONTHS?! What kind of cruel and unusual punishment is that?!

Decaf isn't coffee. It's imposter fluid.

[Sakura Blossom]

Yeah, I miss large doses of caffeine. ): I can still have some, but goodbye energy drinks, most coffee drinks, and anything like that. It makes my heart crazy. D:

[Vesca]

What about tea? Is tea still ok?! *clings to tea*

[Sakura Blossom]

That I don't know. o-o I drink that no problem but I'm not sure about others.

[Firebird]

Tea?, no beuno
anything with caffeine.