• Welcome to Autism Forums, a friendly forum to discuss Aspergers Syndrome, Autism, High Functioning Autism and related conditions.

    Your voice is missing! You will need to register to get access to the following site features:
    • Reply to discussions and create your own threads.
    • Our modern chat room. No add-ons or extensions required, just login and start chatting!
    • Private Member only forums for more serious discussions that you may wish to not have guests or search engines access to.
    • Your very own blog. Write about anything you like on your own individual blog.

    We hope to see you as a part of our community soon! Please also check us out @ https://www.twitter.com/aspiescentral

Dear Doctor, We Need to Talk.

I went to the doctor today. It was productive.
I'm just going to try to summarize via bullet points and micro-vignettes some of the things I conveyed [though I'm sure that will still get a little lengthy].
_______

Receptionist: Are you feeling ok?
Me: Uh. hot. I'm... HOT. I'm hot. I'm really really hot right now.
I was kind of swaying back and forth and feeling like I was not entirely there. My body felt like it was on fire.
---

They were running really late but i didn't really mind because I was kind of freaking out for a while, so I sat in the corner of the waiting room, drank water and tried to cool down.
GP: Hi! Sorry I'm running so late!
Me: That's ok... it kind of gave me some time to freak out for a bit first.
GP: ...ok, maybe we can talk about that?
---

Things I said:
  • The gabapentin [basically the last idea we had to try] was a total bust. I had to stop it.
  • I'm not sleeping very much at all and when I do it's awful and painful- I can't find a way to lay down that doesn't hurt.
  • My back is getting worse.
  • My hands and feet hurt worse and worse- the tops of them, the bones hurt all the time. My fingers hurt. MY TOES HURT.
  • I am at the point where we need to actually consider prednisone as a realistic option because I feel completely powerless to change any aspect of my life. BECAUSE I AM.
  • My functioning is so low that i can't do anything for myself.
  • I am so vulnerable to the heat there are times when i don't even have food in the house. Yesterday i was only outside of the house a few minutes and I came extremely close to suffering heatstroke- I almost threw up waiting for the bus and instead of going right home, I just stopped at the grocery store and hung out in the freezer area, leaning against the cases. I couldn't go right home because I'd have to walk a few blocks in the heat right off the bus.
  • This morning it was 62-64 degrees and too hot walking half a mile. Not as bad as yesterday but still? That's not normal. My body can't handle any kind of weather at this point.
  • I am at my limit right now- I can't do anything else about my situation and boy do I try. I can not find any way to change anything, I can't make any money, I can't go to school. I can't even make things to sell on etsy in a way that I would actually get any income at this point.
  • Taking a shower or doing laundry is an endurance trial.
  • Going to rhuematology basically resulted in me feeling that my situation was hopeless because they told me "there is nothing else they can offer me" so I refuse to go back there.
  • I have serious problems making it to appointments because of my actual health problems, I have trouble keeping my medications up to date and my room is likely a LITERAL health hazard but no one seems to think I am eligible for case management- though no one has actually investigated that with the case management department.
  • Meanwhile my health is getting worse and I am being told we have run out of options. When someone has no way to change their situation, they are in chronic pain, they are faced with a life of unending poverty and are told their are NO SOLUTIONS, what are they supposed to do? [at this point I asked my doctor, "what would you do?"]
  • I pushed hard on the idea that I understood the hesitancy to try prednisone since they keep considering all possible rheumatological DX's as R/Os [and not official], but as it is, my life is at a stand still, I have no relief from pain, and essentially no future. how i put it was: they are keeping me in a life of no choices and I am starting to feel hopeless. I can't be in a position where I feel hopeless. It's unacceptable.

---
Yes, I said all of this. And actually more. And it's necessary to share here, because it's what I told HIM.
I know it sounds REALLY REALLY harsh.
I didn't say it in a really harsh tone. I actually really like my GP- but I think that... I haven't been framing it right. And I haven't been because I tend to paint a better picture than how things are because I see myself as like, a stronger person. And i don't like needing help or asking for it, especially if it's not necessary. Or asking for more than I really need. I say that things are bad, but i'll leave out details. Or i tend to not be as forceful as i need to be to get what i need, even when i know my voice isn't quite being heard. Because, you know- TOO PUSHY.

But I tried the last resort med [that's actually given me BIG problems in the past], and it didn't work.

SO?

TL;DR
I was really vocal about being DONE with all this crap.
So the result is that he [GP] and supervising physician for the practice decided that it seems I have been getting worse so we did all the possible blood work again. They also gave me two months of flexeril to help me with my back and muscle stuff at night and refills on all other meds.

GP is going to talk to psych about how I've been loading up on caffeine just to function [I know that's not great, but... I mean, what else do I do?] because he also thinks that me going back on concerta- which I was on before and did really well on- is probably a good idea. My brain isn't working a lot and I'm fatigued all the time. Mentally and physically- and there are times when i just suddenlly stop being able to do anything- move or think. And it's not a "normal" shut down. When I'm on concerta it helps me sleep better too and I can just keep my sh- together better.

So they are going to look at the labs and see what's going on.
They are also going to look at records from last health org and labs from there and notes from when I was on low dose of prednisone then- and it did help, but I wasn't as bad then. That was also... 3ish years ago, maybe? 2-3?

But, basically they need to get all the info they can to make sure they can support prescribing it to me. And I totally get that. I really really do. And that's also why I've waited so long to be so pushy about it.

But i feel more positive, because I feel like they REALLY get way more clearly what is going on.

They are also going to push for me to get case management. Which would open me up to door to door transportation to appointments. Which would be a BIG DEAL for me.

Blah. Ok anyway.

ALL OF THAT. TRAWR.
I'm A dinosaur. ...or something. YEAH.

Comments

SignOfLazarus
One note:
You know, I think it's even confusing here- when I'm like... YAY I made a dress woo! But then like.. talk about how I can't do all this stuff. And the truth is that i celebrate the stuff I can do, which i think i should do- I think everyone should do that, right?

But... so with the dress? It was ALL I did every day for the entire time. That and sleep and then some times come here. It used to be I could do that dress in a handful of days. But it took me so long to do it, and it hurt, and it was exhausting... but I just was like "I AM DOING THE DAMN THING". And I was so happy it got done and was so happy she liked it [for reference it's in the cosplay entry].

But... I realized that, in the state I'm in? I can't do that on the regular. And I'm disappointed. BUT! After today I'm feeling a bit more optimistic. So, it'll still be a while, but I feel this is like... a good step forward. After all this slow sliding backward I've been feeling.
<3
 
tree
A few years ago my doctor said she wouldn't send me to an RA specialist
because she didn't think it would do any good. And she wanted the address
of the place where I bought vitamin C by the pound so she could give it to
her other patients. I had showed her that I could raise my arm above my
shoulder, over my head even, and that I didn't wake up & have to pry my
hands open [from fists.] Do you get any relief using 20 grams of vitamin C,
per day? I did. [excuse if this sounds really la la la isn't life lovely? not meant
to sound that way]
 
SignOfLazarus
Hmm. I am not deficient in Vit C, so taking a bunch wouldn't help- it's water soluable, you pee out what you don't need! hehe

I do consume a LOT of vitamin c though.
 
tree
How do you know you aren't deficient in Vit. C?
I am interested in knowing that.

I know if I mess up and don't get enough for several days----last time was a couple years ago when I had some dumb puking sickness-----and I thought, well nobody else I know uses so much Vit C. So maybe I don't have to really take as much (after the puking days were done, and I could take vitamins again.) I was mistaken. I do need at least 10 grams a day.
 
SignOfLazarus
mmm.
I can surmise- I tend to drink a lot of cranberry juice which is fortified and a lot of orange juice. I also eat a lot of of berries and other fruits and fresh veggies.

I get plenty of Vitamin C.
Above about 300-500 mg your body absorbs at about 50% [or much less] of the vitamin C one is intaking. I've had numerous tests looking at various vitamin intakes.

I have had B-6 deficiencies off and on [makes sense] and definitely have a D deficiency which is hard to get a hold on. I have a CO2 imbalance which is getting worse and other things which indicate possible kidney problems... so that kinda sucks. That also means I can't go mucking about taking vitamins. I may not pee out the excess like i normally would [not that you are suggesting I do it without consulting anyone- but I was thinking about taking a calcium supplement again, and now I can't just pick one up, anything i think about taking has to go through my GP at this point].

It is POSSIBLE that vit C could be an issue? But it would be so far down the list of possible issues that it's so terribly unlikely. My intake of vitamin C is so high- that's one of them that has never been a concern.

But... 10 grams is a LOT.
Is it possible you changed something else that actually makes it easier for your body to USE vitamin C?

I think it's awesome that, either way, you have changed something fairly simple which can make such a difference for you.
 
tree
Because I really don't know how to use the Blog features, I didn't
notice this until a minute ago.

How much vitamin C are you actually taking as a supplement?
I used to think that 1000mg was an astonishingly high amount.

Something that has occurred to me [not directed at you or anyone here] is
that although people are quick to say they get 'enough' protein, for instance,
what do they mean? One person told me her protein intake was sufficient because
she ate one egg per day. That was the total and she 'knew' it was 'enough.'

My mother refused to take any vitamins because she said she wasn't sick.
Only sick people and babies needed to take supplemental vitamins, she said.
Interestingly, though, she had no trouble with the idea that she 'needed'
tylenol daily for pain. I guess she must have had an acetaminaphen deficiency.

Similarly I get an acetaminaphen/naprosyn deficiency [I am being facetious]
when I don't get a silly excess of Vitamin C.....

The only change that I know of making it easier for my body to use vitamin C is that
it is powdered, not a pill.

IDK if replies in blogs are supposed to be this long.
If not, please excuse it. As noted in site thread,
IDK how to use the blog feature.
 
SignOfLazarus
Well, I'm not challenging that what you changed actually improved your life.
Just 10 grams is a lot of vitamin C.

So, maybe it wasn't vitamin C or JUST vitamin C that was the issue, you know?
Like, maybe you are/were having problems actually absorbing it or using it or something- and that's why you need so much more than the average person.

I do really think if you found something that works for you, and you are keeping in communication with your GP, it's pretty great.

I've had my vit levels checked before though, and they weren't marked as deficient- there are recommended levels, and there are symptoms of vit c deficiency which I don't have. Also,thinking about my diet, on a "low" Vit C day I probably get about 300% of the recommended daily value. There are days when I likely get even three times that because of the fresh produce I prefer to consume and the juice as well- which is fortified with Vit C.

I understand what you mean about people saying they "get enough". I have a similar experience that when I ask some people more detailed questions about statements like that I don't get very satisfying answers. Sometimes I am guilty of it, too though I try to figure out the details when that situation arises.

For protein, last time I checked [last time I was consciously/actively tracking it] I actually have found that if I get a larger amount of protein than is recommended, I feel WAY better. I have more energy, I can think clearer, and actually I can sleep better.

That means my minimum protein intake being about 100-120g a day[<---120 being a super high protein day for me]. The RDA is about 40-60g.

I do have some symptoms of vit d deficiency- which makes sense for my situation, also it shows up as pretty darn low. To compensate, I try to get a bit of sunlight when I remember, i drink and eat things fortified with vit d+calcium, and I off and on take RX'd megadoses of vit d.

Trying to find a consistent regular vit d that I can take as well, but my meds are kind of complicated.
 
tree
My son was deficient in Vitamin D, as diagnosed by doctor. The doctor said for our
area he was recommending 2 to 5 thousand units per day.

Last I knew Vit. C "requirement" [meaning amount sufficient to ward off scurvy] was 60 mg. Three times that wouldn't be enough to be very useful, in a medicinal way.
[unless you really were in danger of scurvy]

I have known people who say they have tried C or B-6, but it did nothing for them. When they finally say how much they used----no wonder.

My level of Vit. C would have been termed adequate when I wasn't able to raise my arm above shoulder level, but the day I accidentally used the wrong spoon to measure my C powder (used one t., instead of 1/4 t.)---within an hour of that mistake, I could
raise my arm above my shoulder. That was how I decided to change that amount.

The GP has since retired.

Can you use/eat nutritional yeast? The yellow flaky kind [preferably]. Not brewer's yeast. [that doesn't taste very good] About 5 gm of protein in a Tablespoon.

A really cool book to read [& look at the photographs] is:
Weston Price, Nutrition & Physical Degeneration.



Thanks. I don't want to be annoying or inappropriate in your blog.
 
Ste11aeres
I'd like to add that too much of a vitamin can be as harmful as too little.
Yes, this does complicate things.

And different individuals need different levels of each vitamin.
Yes, this does also complicate things.

Nutritional experts advise that most people try to get their vitamins from what is naturally present in foods, and not from supplements. This is in order to avoid vitamin/mineral overdose. Of course, one has to eat nutrient rich foods for this to work out. And one doesn't always know which foods are rich in which nutrients. Even different varieties of what is essentially the same type of food have different nutritional compositions. Romaine has more vitamin c than other types of lettuces, for example. DIfferent types of beans have different proportions of vitamins and minerals.

Yes, the whole thing is complicated.
 

Blog entry information

Author
SignOfLazarus
Read time
5 min read
Views
1,536
Comments
10
Last update

More entries in Everyday Life

More entries from SignOfLazarus

  • SignOfLazarus
    Entry title...
    "Whether I shall turn out to be the hero of my own life, or whether that station will be held by...
  • SignOfLazarus
    Piccies
  • SignOfLazarus
    I am not a reasonable human being.
    Not right now anyway- so that means I can't reach out to anyone because I'm supposed to be calm...
  • SignOfLazarus
    H. F-ing. Sh-
    I feel like I'm a lost cause. No. I really feel like that. These feelings don't change because...
  • SignOfLazarus
    meow.
    I'm getting afraid to eat sometimes. I see my doctor and it's like... I feel better because I...

Share this entry

Top Bottom