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erinjane
Oh god, I miscalculated a drink tonight and now my bloodsugar is 22 and I feel like i'm dying. The whole bus ride home I tried not throwing up then I got mad and beat up a telephone pole crying as I walked home. I feel so sick. I know it'll pass soon, but I just can't move. I'm so thirsty but if I drink i know I'll puke.

Give me a cure already.
midgemcgrath
oh, erinjane, i'm so sorry you're feeling so aweful! i hope you're doing okay...
jkat
Hey erinjane, are you still around? I noticed in one of your last posts that you mentioned an upgrade you were getting for your pump....is that what they call a *closed-loop* pump? The reason I ask is that a kid on the island just got one, and his parents rave about it. Apparently they don't have to get up with him at night anymore. I was wondering if maybe you had the same thing. I guess only a few people in the country have it....I'm working for JDRF now, so I am getting so much more information...it's great! Anyway, let me know if this is what you have. Also, I am wondering how the rest of the diabetics here afford their meds. Right now I am a uni student, so my dad's insurance covers me 90%, but I'm worried about how I wil pay after I graduate...
jkat
Sorry, I have another question for the diabetics here. I had a really scary thing happen tonight. I was out this morning working at a garage sale and got a bit of a sunburn, which I think may have contributed to my scary episode. Anyway, I went to Walmart tonight, checked my sugars before I left and I was at 5.0 so I thought I was fine. While I was in Walmart, I started to feel really anxious, like maybe I was having a low, but not totally sure. I tried to just chill out for a minute, and thought I was fine, but a few minutes later I had to pretty much drop everything I leave the store FAST. I was so sure I was going to pass out. I got out of the store, had a bunch of sugar and sat in my car until I felt better. I've never passed out, and I always have been able to recognize a low well before it became....really low, I guess. So, long story short, this really, really freaked me out because I'm not sure if I was super-low, having a panic attack, or a little heat stroke. Or more likely, a combination of the three. Any thoughts? Anyone else get paranoid about lows? I suppose a constant blood glucose monitor helps.
erinjane
I don't have that one yet, I'm waiting to upgrade again, but when I got this pump we got a contract that makes my upgrade faster. I tell you, the companies will give you nearly anything to get your business (except a free pump of course). But I have run into a few people with the new system and they love it. Great for fine-tuning your sugars and making sure you're in range all the time.

I'm looking forward to getting one, unfortunatly the sets you use which need to be changed every few days aren't covered by pharmacare yet and are something like $400!!! Yikes.

Jkat, since you're using mmol, are you in Canada or the UK? I assume not the US because I know there BG measurement is different. I'm in Canada and thank cod for pharmacare. My deductable is only $145 because I'm a student with very little income. My dad's insurance covers my $145 up until this year, when I turn 21. But I can afford that. Hopefully I'll have a good job when I'm older that will cover what I assume will eventually be a sizable deductable.

As for your other question, I've had that happen a few times. Usually I recognize lows very fast, but sometimes it just hits me out of nowhere and I start getting really sweaty and shaky and can't breathe right. Sometimes if I'm around 5 but feeling a little iffy anyways I'll treat for a low. I've been known to start feeling them around there. I would say pay attention to your body first, numbers second (unless of course they differ drastically, like you feel low but your 20.)
jkat
Erinjane,

I'm in Canada, BC actually. So I should look into pharmacare then. I think I am going to seriously look into the pump. My sugars are starting to get more unpredictable; yesterday and this morning my level was 12 and usually it's 6-ish. UGH....I'm just so frustrated with it all. I went out for lunch yesterday and started to feel panicky, so I tested and I was at 7....no where near low. I think I'm starting to get paranoid when I'm in public. I'm going to get in touch with a rep and tell them I work with JDRF and I'll advertise the thing like crazy. Maybe they'll give me a decent deal.
Anyway, thanks so much for answering me. It's great to have someone closer to my age but with so much more experience to talk to :-)
midgemcgrath
anyone have any tips for making it through high-intesity/stress events, such as a job interview? i have one this afternoon and between travelling all day yesterday and waking up with the runs, i am a little worried...
erinjane
I think I was lucky to have such a support system around me as I was growing up which helped make me really confident in my abilities. Definatly look into pharmacare, since you're a uni student your deductable will probably be super low. And all my supplies are covered, including insulin pump supplies. It's great.

Do you have any kind of support groups where you are? There's something called the Maestro Project here where a bunch of us young adults get together and just chat (i may have mentioned it before). They also get the drug companies to sponser these info dinners twice a year that are free and usually very tasty.

http://www.maestroproject.com/

this is the website for the project. We're having a meeting tomorrow so I could ask the coordinator if she knows if any other provinces have similar things set up. I know it helps me a lot to have others to talk to from time to time who are around my age.
suffering
This is a longshot but anyone else have late stage Lyme disease? I just found out I have this after suffering (hence my user name) for over 12 years with symptoms of it.
jezabelle
I haven't officially been diagnosed with Systemic Lupus yet, but everything is pointing to it. I've tested positive for Antiphospholipid Antibodies (blood related), Anti ds DNA (bones and joint related), hypo thyroid disease, and most recently I was told I have fibromyalgia. I've had to go on assistance until I can get my disability squared away, pretty embarrassing. Now Ontario (Canada) disability is giving me such a hard time. The problem is with the Antiphospholipid, ds Dna, and the thyroid, you can have false negatives, so I've been all but anal probed (I'm sure thats next) to prove my illnesses. I'm just ready to give up! I was told to seek disability just in case I have a serious flare up, this way it will already be in place. Chronic fatigue is one of my major symptoms, and some days I can barely get out of bed - which is hard with 4 kids!
I'm just so frustrated trying to prove I'm not crazy, and all of this isn't in my mind!
Thanks for letting me vent!
midgemcgrath
ugh, jez, that's rough. fatigue makes it so hard to do the simplest things some days, never mind raise 4 kids! wow.

hope things all get worked out soon!
suffering
Jezabelle,

Just an idea but have you been properly tested for Lyme disease (through a good lab like Bowen or Igenex)? I simply ask because you have some of the symptoms: chronic fatigue, hypothyroid, fibromyalgia etc. Lots of Lyme patients get misdiagnosed with Lupus, fibromyalgia, depression, etc. Lyme disease can affect all the systems in your body.

Sorry to hear you are feeling so awful. I can really relate. I have been too tired/sick to work or go to school for the past two and a half years. I finally just a few months ago found out I have Lyme. Now I am starting on treatment.

I hope things work out for you.
jezabelle
No, I haven't been tested for Lyme disease - it hasn't even been suggested by my Dr. I feel like they just want to prove I'm imagining it all, but I've been feeling sick since I was 15 - I'm now 35!
Thanks for the suggestion, I will definitely bring it up to my Dr.
coccinelle
Suffering, what symptoms did/do you have? How did they finally decide it was Lyme?

I myself have been having weird symptoms for at least the past three years -- they include joint pain, swollen glands, hair loss, fatigue and anxiety. A year ago I also had an abnormal pap but I don't know if that's related. Seems like it would be though. I've been seeing a rhumatologist but she hasn't yet determined what's going on other than it's (probably) not lupus.

It occurs to me that it might be Lyme disease. I found a CDC document online with a long list of symptoms that include most of the ones I have. And all the places I've lived in the US are inside Lyme tick zones! I now live in France, where Lyme disease is much more rare, so perhaps this is why my doc hasn't thought of it.
suffering
I am by no means saying that either or both of you have lyme disease just that it is a possibility that (in my experience) most doctors overlook.

My symptoms: in the past I have had depression (since I was 15. I'm 26 now). Manic reactions to antidepressants, manic episodes (I have no family history of bipolar so this one was always bizarre to me. now I understand that psychiatric symptoms are not uncommon in Lyme). I have had unrelenting insomnia since around age 14. The past two years or so the insomnia has been its worst. I did a sleep lab that revealed 56 awakenings in 4 hours of sleep (insomnia is very common with lyme).

I have also had knee pain and swelling that comes and goes. I was tested for junior rheumatoid arthritis and it came back negative and the symptoms just went away (very common for lyme disease symptoms to come and go or pain to move locations through the body - this is why so many doctors label Lyme patients "hypochondriacs").

I also have very low cortisol (Ie adrenal fatigue), low thyroid, low iron, vitamin c deficiency, low potassium, calcium deficiency, vitamin e deficiency, and selenium deficiency.

I have also had unexplained severe swelling of the lymph glands (to the point where one of my lymph glands was swollen to the size of a golf ball. then that symptom just went away). Paradoxical reactions to medications, ringing in my ears, progressive (severe) TMJ, night sweats. I also have unexplained fevers. As well, I have extreme debilitating fatigue (part of that is due to the very low cortisol). I have sore throats that come and go but never as a part of a cold just randomly. I have irregular periods and interstitial cystitis symptoms ("irritable bladder". Some days I urinate upto 35 times. Usually wake up to pee 6-8 times/night and have mild incontinence which is unusual.). Recurrent bladder infections starting two years ago(currently have an enterrococcus infection). Very low immune system which is why I catch all these bugs/bladder infections.

I think that is about it. Now that I typed that all out I realize just how many symptoms I have. It's a bit overwhelming to think about.

I saw 20 doctors in the past 2.5 years trying to figure out what is wrong. None of them mentioned Lyme disease until I talked to a nurse practitioner in the US who suggested Lyme disease testing. She strongly suspected it based on my symptoms.

I have been totally debilitated over the past 2.5 years or so. I have been living at home with my parents and spend most days in bed or on the couch. I am going to see a lyme doctor on august 21. I do not have an official diagnosis yet. However, I received the highest positive possible on the Bowen QRiBb test (quantitative-rapid identification of Borrelia burdorferi). Borrelia burgdorferi is the spirochete that causes Lyme disease. The Bowen test finds the actual bug in your blood. Most Lyme test rely on antibody testing and in chronic Lyme (which is what I have) the person is usually so sick they don't produce antibodies so it is possible to test negative and yet be very sick with Lyme. The ELISA test is the test doctors usually use and it is a very bad test. It is incredibly inaccurate and if your doc says it is a good test you should be aware that he doesn't know about Lyme disease. I'm just warning you in the event that you come across a doc who says the ELISA is the gold standard lyme disease test. The best tests for Lyme are probably the Bowen test and Igenex test. In my experience (and a lot of other Lyme patients' experience) infectious disease doctors know the least about Lyme disease.

Hopefully the info. I gave isn't too overwhelming. You just have to be aware of these things when you see the doc. it's totally possible that "weird unexplained" health problems are caused by something other than Lyme disease. But on the other hand if it is Lyme disease you'd want to know that because it is a very serious disease that requires treatment.

Take care.
coccinelle
Thanks so much for this information, Suffering. It's helpful to know which tests are most effective.

I've had progressive TMJ too, since age 11 (I'm 31 now) and depression since forever, it seems. The anxiety and panic attacks only started happening a few years ago. Some strange low-grade fevers and sore throats from time to time too. I don't have any of the rest of the symptoms you mention, but of course not everyone will have the same symptoms. And I still don't know if I have Lyme disease or something else...

I'm sorry to hear you've been dealing with this for so long. Same for Jezabelle! I hope we all get our illnesses correctly diagnosed soon!
erinjane
I noticed you guys said you had TMJ. I was diagnosed with that after complaining of earaches and chronic headaches about 5 months ago and it's been getting worse really quickly. What actually tipped me off before that was...TMI, not being able to go down on my boyfriend for more then 2 minutes before a lot of pain. Someone on here suggested I might have it because of that. I'm seeing a TMJ specialist at the end of September but does anyone know if there's any treatment? Two nights ago it got extremely painful after I just spent an evening laughing with my family. The whole right side of my face was aching all night.
suffering
TMJ is not pleasant at all. It can be very painful. Yes there are treatments for it. I've done Botox injections (it's not just for cosmetic purposes but most people don't know that it has legitimate medical purposes). There are also medications, night guards to wear and massage therapy. Yes there are definitely treatments. Right now my dentist is trying to find out if the TMJ treatment is different for people who have Lyme disease vs people who just have "regular" TMJ. I'll let you know if I find out anything.

Take care. I know it can be painful! have you tried moist heat? That can help too.
erinjane
I haven't really tried anything because my doctor just told me I'd need to make a dentist appointment. It's kind of funny, but it gets really bad when I smile or laugh, which is a lot of the time. It progressed so fast though, just within 8 or so months. I wish my appointment was sooner. I'm afraid I'm just gonna go in and he's going to tell me I need to go see another specialist and wait another two months for an appointment.
coccinelle
In my case my jaw has also been slowly shifting to one side... it's relatively subtle, to the point that nobody else notices it until I point it out, but I always see it right away in photos of me and hate it. When I look at my teeth in the mirror I see how much they don't "line up". Then there's the clicking, limited movement, pain (though mine isn't that bad, which is why I've let it go this long) and earaches/ear infections, which seem related though I don't know all that much about TMJ.

When I asked my dentist about it, she referred me to an orthodontist. Haven't been to see him yet because I'd rather find out what has been causing my joint problems first. I read in the Merck manual that TMJ is sometimes associated with things like rheumatoid arthritis or other diseases affecting the joints -- since your jaw is a joint!

Unfortunately when the malocclusion (jaw that has shifted) gets to a certain point, the only way to fix it is through surgery, which may involve removing a section of bone and resetting the whole thing. Blech! Guess I'll save that for a little later... and sadly TMJ treatments are often excluded from insurance coverage.
suffering
coccinelle- you're right about tmj treatments usually excluded from insurance. the treatments are all usually really expensive.

i'm not sure about rheumatoid arthritis and the jaw but i do know that now i have mild osteoarthritis in both jaw joints just from the wear and tear of grinding. i have been grinding since around age 12 and i'm 26 now. it has been especially bad within the last 3 years or so. i think the osteoarthritis is pretty new.

i haven't heard much about surgery for tmj. personally i would stay away from it unless it was my very last option and i was totally debilitated by the tmj. i don't think they often do surgery because it can cause it to be evern worse afterwards (in some cases).
erinjane
I was looking at treatment options online last night and surgery was mentioned but always as a last resort because apparently it often doesn't work. My dad works for the government and I think I stop being covered by him in two months when i turn 21 so I'm scared a treatment is gonna be really expensive. 5 days after my initial appointment is when I get kicked off my dad's insurance. In the last month it's gotten a lot more painful so I know I need to do something about it. Gah, I wish my appointment was sooner.
coccinelle
Erinjane, I highly recommend that you get insurance of your own once you are kicked off your dad's policy, and that you set it up so that there's no "uninsured" period in between. If you go for a while without any insurance (in the US at least), and then get new insurance, you may have a long waiting period before you are covered. In the event that something comes up during that in-between time, it will be considered a pre-existing condition and you might have to wait a long time (even up to a year) before the new insurance will cover it.

If you're a full-time student you might still be covered by his policy until age 24. Maybe it depends what state you are in and what insurance your dad has.

I myself finally have insurance again after six or so years without any. I thought I was healthy and didn't need it, but it turns out now that I wasn't... now I'm not sure how to present my symptoms to my future doctors in the US. I'm going to have to say they are very recent whereas in reality they've been developing over three years. If I admit I had the symptoms before I had the insurance, nothing will be covered. At least that's how I understand it... maybe others are more knowledgable about how insurance works in the US.

Healthcare is so much more affordable in other places like Canada, the UK, and other places in Europe. Right now I'm being seen by doctors in France and just paying it all from my own pocket since it's so much less expensive than in the US. A 20-minute visit to a specialist in the US can be hundreds of dollars (the full price, if you don't have insurance) whereas in France it can be as low as 25 euros. And French citizens and residents (not my case) pay only, say, 7 euros of this -- the rest is paid for by the State and/or supplemental insurance. Must be nice huh?
erinjane
Insurance isn't as big a deal for me because I'm Canadian, and I am extremely thankful for that. If I was getting kicked off I would have automatically been put on my universities insurance, which is still decent, but my dad works for the government and nearly everything is covered. But i'm so thankful to be Canadian too because I never have to worry about paying for something as simple as a doctor's visit.

Buuuut...my dad finally figured out what was gonna happen in two months when i turn 21. Because I have type 1 diabetes I'm considered "disabled", so i am on his insurance as long as I live with my parents.
*sigh of relief*
coccinelle
That's great! I'm really glad to hear you'll be covered. smile.gif
lux
nice to know that i'm disabled:)
suffering
I am in Canada too but am 26 and have been too to return to university so no insurance for me either which sucks but then again no Lyme treatments (with the exception of antibiotics) are covered by OHIP so I guess I'm not really missing anything.
midgemcgrath
OMG. My masters defence is at 1:30 today. I thought I was doing so well not being a stress-case about it, but even though I felt fine last night, I think I managed to only get about 2hrs sleep. What the hell?! Now my stomach is rampaging and I feel like a total zombie. I don't know how I am going to make it through this, but somehow I will...

wah.
spazmatazz
Jesabelle: I'm pretty new to the lounge, but have been reading through old posts and saw yours about a possible lupus diagnosis. I was diagnosed with Systemic Lupus 5 years ago, and was amazed at how relieved I was to finally get a diagnosis; some sort of confirmation that I wasn't just trying to get attention, that I really was sick. Sometimes, if people can't see your sickness it isn't real to them, ya know?

Anyway, just wanted to empathize a bit. You're not crazy...you're hurting, and you don't have to.
_octinoxate
bump
annelise
does anyone have mitral valve prolapse syndrome? i have chronic fatigue syndrome and my doc suggested that i may have MVP syn. as well. i've done a bit of reading online and don't quite know what to think...
oceangirl
Anyone else with Chronic Lyme disease? I have asked this before but under a different user name. I had to sign up again when the board made changes. Anyway, just wondering if there is anyone out there with chronic lyme?

thanks
oceangirl
Hmm did I kill this thread?

No one with chroinc Lyme?
mandolyn
sorry, oceangirl, i don't know anyone with lyme disease. i bet there's an LJ group, though.

annelise, i realize this is a very late response, but i was "diagnosed" over 20 yrs ago with mitral valve prolapse. my doctor heard a "clicking" noise when she listened to my heart via a stethoscope. and subsequent doctors, well, i just told them i had MVP and they heard the "clicking" noise too. i was never symptomatic (ie: chest pains), but always had to take amoxicillin before i went to the dentist, and when i had my son via c-section, i was on an antibiotic drip for two days. otherwise, it never intefered with my life. in the back of my mind, i assumed it might cause something "bad" in my later years, though.

recently, due to some issues with lightheadedness, my doctor suggested i have a heart sonogram (it's called a 2D echocardiogram). and voila - it turns out i do NOT have MVP! in fact, she said i had a "beautiful heart" - which is good to hear, considering my age and family medical history. so, if there's any suspicion of MVP, i would strongly advise you to have a songoram. i have no idea why none of my doctors over the years didn't decide to see for themselves, nor do i know why i just accepted it so readily. i feel quite the idjit.

i bet heart sonograms are the norm these days, when MVP is suspected. it's apparently very common, especially in women.
annelise
heart tests (echos and sonograms and such) i'd had done years ago said i had MVP, the more recent ones say i don't...so it's not clear whether i have it or not. it's sort of a relief not to have to think about treatment options, since the syndrome sounds like it's not well-defined, and i really don't want to deal with another vague-syndrome-diagnosis.

now i have a new naturopath and i'm trying not to freak out...i worry about getting too hopeful, because i don't want to get my expectations too high and then be disappointed. but it's good to have hope.
oceangirl
mandolyn,

Thanks for answering. What's an LJ group? Livejournal you mean?

~oceangirl
puss in boots
Hi Oceangirl,

Tonight is my first night in the Bust lounge, and I saw your Lyme question. I have late stage chronic Lyme, so feel free to write.

Hi Oceangirl,

Tonight is my first night in the Bust lounge, and I saw your Lyme question. I have late stage chronic Lyme, so feel free to write.

QUOTE(annelise @ Sep 29 2006, 02:30 PM) *

does anyone have mitral valve prolapse syndrome? i have chronic fatigue syndrome and my doc suggested that i may have MVP syn. as well. i've done a bit of reading online and don't quite know what to think...


Hi I know your post is quite old, but I have MVP, if you need anything.

QUOTE(spazmatazz @ Aug 30 2006, 07:35 PM) *

Jesabelle: I'm pretty new to the lounge, but have been reading through old posts and saw yours about a possible lupus diagnosis. I was diagnosed with Systemic Lupus 5 years ago, and was amazed at how relieved I was to finally get a diagnosis; some sort of confirmation that I wasn't just trying to get attention, that I really was sick. Sometimes, if people can't see your sickness it isn't real to them, ya know?

Anyway, just wanted to empathize a bit. You're not crazy...you're hurting, and you don't have to.



Hi there,

I am new to the Bust lounge and read your post about having and managing Systemic Lupus. Congratulations on the management! I have late stage Lyme with secondary and tertiary complications, and I joined the Bust website, in part, to possibly connect with other cool, young, women (or men), who have chronic illnesses, and are finding satisfaction in there lives. I wouldn't say that "I can't get no...satisfaction" with my life, but as greedy as it sounds, I want more. One of the biggest challenges for me right now, is finding a way to support myself on social security. (as I'm sure you know, being poor is more difficult,when your med.s cost as much as your rent:) So, now that I've put it all out there on an old thread. I was wondered if you'd mind sharing any tips on making life the best possible. Thanks

QUOTE(suffering @ Aug 4 2006, 03:30 PM) *

I am in Canada too but am 26 and have been too to return to university so no insurance for me either which sucks but then again no Lyme treatments (with the exception of antibiotics) are covered by OHIP so I guess I'm not really missing anything.


Hi,

I was just reading your post. I'm in a similar situation, but I live in the states, and can barely figure the social services here. I'm 27 and have had Lyme for most of my life, but it's been the worst for the past 8 years. I'm trying to finish my studies at DePaul University online.
Since this is an older post,
How are things going for you now?

QUOTE(erinjane @ Jul 31 2006, 10:59 AM) *

I was looking at treatment options online last night and surgery was mentioned but always as a last resort because apparently it often doesn't work. My dad works for the government and I think I stop being covered by him in two months when i turn 21 so I'm scared a treatment is gonna be really expensive. 5 days after my initial appointment is when I get kicked off my dad's insurance. In the last month it's gotten a lot more painful so I know I need to do something about it. Gah, I wish my appointment was sooner.

erjane,

I've been in a similar ins. situation. I became chronically ill at 19 at the end of my second year in college. I'm in the US and my dad works for the state, so for a while I was covered through his plan, then that was extended b/c I was in school, and now, I'm 27 in school part time and have gov. ins. (which sucks) and we found out that legally because I was considered disabled by the court, I was entitled to supplemental ins. through my dad's new work plan (though unfortunately this coverage is about as poor as the gov.)

I wish I new more about how things work where you are, but I know how frightening and frustrating this situation can be. So jus' keep rockin' it-- keep records on your computer and in paper, keep track of all your dealings with doctors and Rx reciepts-- keep files on everything! That's the best advice I think I can give.

QUOTE(suffering @ Jul 31 2006, 10:32 AM) *

coccinelle- you're right about tmj treatments usually excluded from insurance. the treatments are all usually really expensive.

i'm not sure about rheumatoid arthritis and the jaw but i do know that now i have mild osteoarthritis in both jaw joints just from the wear and tear of grinding. i have been grinding since around age 12 and i'm 26 now. it has been especially bad within the last 3 years or so. i think the osteoarthritis is pretty new.

i haven't heard much about surgery for tmj. personally i would stay away from it unless it was my very last option and i was totally debilitated by the tmj. i don't think they often do surgery because it can cause it to be evern worse afterwards (in some cases).



Have you tried any TNF (Tumor Necrosis Factor Inhibitors)? Embrel, Humira, or Remicade?
oceangirl
Hi Pussinboots,

I just turned 27 too so we have a few things in common. I haven't yet finished my university degree. I have 2 credits left. It's been on hold for 3 years as I've been living at home with my parents unable to work or do anything. I just started on treatment a few months ago.

What has your experience with Lyme disease been like?

~oceangirl
puss in boots
Hi Oceangirl,

Wow, you're the first person that I've met who's in a situation like mine. Mostly, when I've been on Lymenet or to support meetings the people who are most active are in very different stages of their lives as compared to mine, and sometimes I can find it difficult to relate.

I'm an eighth or ninth year "junior", at DePaul University and omg, I'm ready to get this degree finished and move on. It's great that you only have 2 credits, so you're about there. What are you studying?

I'm in RI (the ocean state) right now, with my parents, and hoping to move to a warmer climate as soon as I'm able. I've been lightly researching a variety of housing options, but so far nothing is too promising. I'm on SS, and affordable and safe housing is difficult to come by.

I don't know what your experience has been, but I've found that navigating the public assistance in our country is one of the most depressing, fruitless, and unrewarding challenges of my experience with chronic illness. I actually posted to Bust, the night that I posted this email, to see if we anyone wanted to collaborate to make a resource forum. The forum could share information about: how to save money creatively, helpful non-profits that support women- people with disabilities or people with low income etc., tips on how to deal with the government "assistance" without pulling out all of your hair, etc.

I've found that since becoming ill, I've spent a lot of time researching illnesses and related resources and I still don't feel like I know very much. If a group of people pooled their learnings, it could improve this experience for all of us.

Cheers!

Adrian

QUOTE(oceangirl @ Feb 27 2007, 08:16 AM) *

Hi Pussinboots,

I just turned 27 too so we have a few things in common. I haven't yet finished my university degree. I have 2 credits left. It's been on hold for 3 years as I've been living at home with my parents unable to work or do anything. I just started on treatment a few months ago.

What has your experience with Lyme disease been like?

~oceangirl

annelise
I don't know what your experience has been, but I've found that navigating the public assistance in our country is one of the most depressing, fruitless, and unrewarding challenges of my experience with chronic illness.

this is SO TRUE. it all drives me mad.

that's a good idea about having a resource forum (or maybe thread), but i'm not sure how many people it might apply to. maybe we could talk about things of that nature on this thread...anyone who wants to know more about american public assistance is welcome to PM me as well. (i've been sick for years, am on SSDI, etc etc).

people always go on about how OMG YOU'RE SO YOUNG WHAT A WASTE. there are young people who get chronic or serious illnesses! we're just not so visible, and there's less of us. my new doctor actually commented on how we needed to figure out how to treat me better so i could get my life back.

i have a life, thank you very much. i'd like to be as healthy as possible, but i resent the implication that because i'm sick, my life has less value or meaning.
_octinoxate
hi all. i might be in here more often to join in the conversation (as i have some chronic stuff as well- actually just one main thing) but just in skimming the thread so far it occurred to me to post this:
www.chronicbabe.com
I bet it's old news to most/all of you (I originally heard about it on bust), but I thought I'd post it just in case. It's for young women who happen to have chronic illness-- but who DON'T buy into the idea that their lives have less meaning or any of that garbage.
oceangirl
Hi puss_in_boots. Sorry it took my so long to get back to you I forgot to check this thread ooops.

I think the resource thread is a good idea. I haven't had to use any of these resources because my parents are paying for my treatment/I'm living at home with them.

I am in Canada. The medical system is sort of different here I guess. Sort of different but mostly the same. The doctors here mostly don't know anything about Lyme disease. We have two (yes 2!) Lyme literate physicians in the whole country. It's crazy.

I was studying English lit. I can't believe I started my degree in 1999. Woah, what a long time ago. It should not take this long to get a three year degree but when you are sick it just screws it all up.

Annelise - yes people can say really stupid things. I have heard some of the stupidest comments over the past few years. When you're sick it seems no one really knows what to say and some of them can say really insensitive things.

The other thing I've noticed is that people don't think young people can be sick. Automatically because you are you young you're supposed to be healthy. I wish.
It sounds like your new doctor is trying to get you better that's good. Unfortunately in my case I have absolutely no life but I know what you mean that your life does not lose all meaning or value just because you're sick.

Hope that all made sense!
oceangirl
oops I was just re-reading this thread. I should point out that I am the old member named "suffering". I lost my password when the board switched over. Just wanted to point that out. Puss in boots, what is TNF??

Also forgot to say that yes I can relate to not being able to relate on other boards. I feel like a lot of people are ahead of me in terms of what they can do. A lot of them have finished school, are working,etc. I haven't talked to a whole lot of people my age with Lyme disease who are totally debilitated the way I am.
jkat
hey octinoxate, thanks for posting that link to chronicbabe! i'd never heard of it before and it's pointed me to some good diabetes blogs.
_octinoxate
Sure thing, jkat! Glad it was helpful.

I'm glad there are communities where us young folks with these issues can feel at home... (unlike at the physical therapy pool I go to twice a week, where nobody else is younger than 70! Oh- but! I'm seeing a new therapist this week who is used to rehabilitating athletes. I'm excited for her new approach-- and for actually going to someone covered by insurance!!)
mellie0304
Hi does anyone here have a prolactinoma like I do? I am going in for a D&C to control some of my symptoms I have from this and I wanted to know if anyone else has what I do.
jkat
no kidding, octinoxate! i go to my endocrinologist's office, and everyone's a senior. makes me feel sicker than i actually am. that's part of the reason i volunteer with jdrf....more young people. it's nice.
_octinoxate
In a way, though, being around all the seniors makes me feel *healthier* than I am/than I usually do. In spite of my limitations, I've got good balance, coordination, muscle tone, great upper body strength, speed, stamina, etc. Compared to all the ladies at the pool I'm like an olympic star in the water smile.gif It's not that I rejoice in their weakness/lack of ability at all, it's just that it makes me realize all the stuff that, in my youth, I've still got going for me, and makes me grateful for that!
jayboogie
Anyone here with Polycystic Kidney Disease? Andony here that has or is in the process of prepairing for a transplant?
juls
My little sister had a kidney transplant a few years ago; she was about 17 years old. Fanconi Syndrome. It's now been 7 years and she's never had any rejection problems!

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