Coping with possibly devastating news...

Almost 2 weeks ago I received news that I might be very sick...

At first I was in shock. The first person I told was my SO... He seemed in shock too at first. But he was my rock that day. He took me to the first Doctor's appointment, and then later on that night he taught me how to make egg rolls (he loves to cook Asian food.)

Since then I have told my Mom and a few close friends.

I really don't know how to cope with this... I wish I had more time to go into detail but I have to keep this kind of short because I have to leave for work.

My SO and I spent the first day researching this condition online and reading about options. Some of the things I read made me feel better. But, the financial aspect of it was really upsetting. I feel like that is really dysfunctional... It was like I wasn't that concerned about my health, but more concerned about my bank account. I have no debt (something really rare for someone my age) and now I am facing something that could put me in debt for the rest of my life. This is one of the most expensive diseases out there to treat. Even with health insurance...

I have excellent health coverage where I work. I don't plan to tell my employer anything because legally I don't have to. But I'm afraid of them somehow finding out, especially if I have to take a lot of time off for Doctor's appointments and stuff. And even though it's illegal to fire someone because of a medical problem alone, they will find a reason to fire me. I will be costing them money in healthcare, so they will establish a paper trail and I will be out on my ass. Then I will really be screwed because I won't have insurance or even a way to pay my other bills (aside from the medical ones I mean... rent, electric, etc) I keep thinking about all these awful possible scenerios where I have to move in with my parents, live in a halfway house, etc.)

My SO and I were talking about taking a trip next summer. And lately I find myself obsessing over that. I don't know if this is exactly healthy... I keep thinking about that because I feel like it's a way of keeping positive. I keep thinking after I see the specialist (in May) and find out it's not serious, then I can put all this behind me and concentrate on good things. But I have had awful luck pretty much all my life, and I know that is highly unlikely. So I feel like I'm building myself up for a big disappointment because if I am seriously ill that trip isn't going to happen.

I also keep catching myself thinking about things that I will have to give up to afford treatment. Ironically enough most of these things are things that keep me healthy (things like my gym membership... buying organic food, etc.) I keep thinking about all the simple pleasures in life I will be missing out on. Stuff like having a glass of red wine at the end of the day to unwind, going out with my friends, etc. How will I do any of this when I have thousands of dollars in medical bills to pay? I don't know if this is a practical way to think or if I am even being realistic.

I got my first tests back and they didn't look good at all. So now I have to wait until May 7th to see a specialist and find out how bad it is. I'm not saying what it is I might have because I don't want this threat to turn into a bunch of people telling scary stories.

I've been so stressed out about this that I didn't even have a period this month (and pregnancy is a very unlikely possibility, before everyone suggests it.)

But... I have to end this here because I need to leave... so any advice anyone has or any words of encouragement would be great. I don't feel comfortable talking about this to that many people close to me... but a bunch of strangers I feel fine with. Funny how that works.

When I finally had my neuroborreliosis confirmed I was devastated. Over the costs as well. But because I was worried my income wouldn't cover for what my health demanded. Not because it meant giving up trips, outings or a nightcap. If you're seriously ill, investigate further into your diagnosis. Yup, it will freak you out. But it will also get it through to you that your life has changed- it won't be so much about "fun" as it will be about getting better. Life can take dramatic turns..I guess yours just has.

It's not that the money being redirected into medcare costs is ruining your social life. If the money issue doesn't make "fun" less accessible your illness will. First things first: Get treatment. Your health just isn't something that can take the back seat.

If you're not obliged to inform your boss you don't have to. If treatment options and prognosis made you feel better it's possible you could function quite well despite the disease so they'd have no grounds to fire you. If you're worried they will it's okay to keep an eye out for other jobs in your area.

Hang in there, the first few weeks into it are a nightmare, getting accustomed to the idea you'll have to live with this and it might deteriorate and it would dramatically change your life and yup, you wouldn't be able to do or have what others do or have...It's a big change. But once it sinks in you start to function with the new situation and the new rules.

Really focus on the treatment now, you need it to stay functional- and employable. The rest can wait. If it's really serious consider looking into partial disability or disability options, you may qualify.

Hugs, it's a shock but trust me, as it settles you'll realize you're still the same person with a somewhat changed life but making it nevertheless. Life turns into a lot of things we didn't plan but with some adjustments it's still okay. Look up pages or forums related to your disease, they can be very helpful in terms of information about affordable treatment options, insurance, references to good clinics could lessen the need to look for professionals in the trial and error way so it saves you some costs potentially...

Let us know how it goes, good luck!

Forgive me if I took it wrong, but the first part of your post comes off a little judgmental I work a cheap job that pays well so I can afford to do the thongs I love (like traveling) if I can't do those things anymore, then what? I just get up and go to my crap job every day and sit at home trying to pay off a debt that's never going to be paid? That sounds like an awful way to live. What's the point of living a life that I hate? And the sad part is, things have gone really wrong for me for most of my life. And everything was finally falling into place. The timing couldn't be worse.

I have done loads of research in these last two weeks about my disease. So much in fact that some people think I should stop because its doing more harm then good.

I wish I had time to write more but I Ned to go back to work... break is up.

I haye when my phone auto corrects stuff. I typed "crap job" and my phone changed it to "cheap job."

And its things not thongs. That probably was my fault though.

It's okay, I get ya Sorry, I did understand what you meant,didn't mean to judge, Meant to say some things should take the back seat while your paying your med bills. It'll most likely be temporary. Will life suck for a while? Probably, yes. The sooner you get sufficient treatment the sooner you'll be back on track. I know it's devastating, I thought stuff like "why can't I just die, that's no way to live" but to be honest after a few weeks it became clear I can still live a pretty normal,albeit not very exciting life (unless fearing for ones health counts as excitement) - for the moment. SO and I had plans to travel for a couple of years in a minivan. It's not gonna happen, I can't get neurovascular complications and seizures in the middle of nowhere, they're scary enough when they happen at home. So I'm not having much fun either and won't be for at least the next two years. If I seem better and stable then, yes. Money is tight and I have to enjoy the little things, walking the dog, a short fieldtrip, a good book, movie night at home. Friends don't understand I can't hang out any more because I'm both broke and exhausted etc. My point being it'll probably suck for a while yeah. But you'll pick up some more activities when you're better. You're still young so your body will probably bounce back better than with older patients and your life won't exactly be over and done with in a year or two- or, depending on the diagnosis, less.

I get you on the timing though. Seems disease likes to come over so much more when there's plenty to mug you off.

It totally ruined every plan I had for me. Forcing me to drop my expectations of what life should be. It's a terrible way to grow but grow we must

Take a breather, give it some time to settle. You'll realize the worst case scenario isn't playing itself and there's still things you can enjoy. I wish I could be more specific but initially it really is a storm and it sucks and hurts to the very soul and you just have to give it some time to adjust.

If your SO is supportive he probably won't mind covering some expenses while you're paying for the treatment?

Hope it works out well, It'll be tough for a while but probably not as tough as you imagine it would be at the moment.

Is there a group of patients with your disease you could connect with to ask some advice on effective treatment, cutting down costs? It might help to hear from them how soon after the Dx things returned to normal(ish).

Good luck, you will get through this!

There are some support groups online. But I haven't joined any because I am not officially diagnosed yet. Also, my gym is run by two people who are really into holistic medicine and naturopathy. There are people who work out at my gym who also have what I *probably* have. So the people in charge there have ordered supplements, etc, for people with this disease.

My SO is really supportive. He really has been awesome through this. He will probably have no problem with helping out while I'm getting treatment. I haven't brought it up though, because I feel like that's jumping the gun. I'm not diagnosed yet.

I keep getting hung up on thoughts like, "What did I do to deserve this?" I have been called a "health nut" by so many people. I work out 5x a week. I eat ridiculously healthy. I buy as much organic food as I can. I don't smoke, I don't do drugs, I rarely drink (except for the glass of red wine I like to have at night.) And I recently started making my own dish soap and all purpose cleaner out of natural compounds. When I first found out one of my first thoughts was "All these years of taking good care of myself... for nothing." But the more research I've done, the more I know that all this good care I've taken of myself will probably pay off tremendously if I need treatment.

I suppose it could be worse. I could be in this situation without insurance. The average cost of treating this disease is about 100k.

Thank you for replying. As far as the whole judgmental thing, I was probably being oversensitive.

I tend to not mind my choice of words because I take it for granted too often that the post won't convey my tone, intention or even my point always- but I really do get what you mean, everything is upside down all of a sudden...

After having invested into yourself in your life for so long it just makes no sense to see it collapse...It won't entirely collapse though, just change.

I get the health freak thing, I've been one too- seriously, how did that not help?? So not fair...Although, given my dx I am doing way better than most people with same dx and duration so I guess it DID help I took care of myself or I would've been doing even worse now..

It's great there's other people with that at the gym and with a supportive partner it'll be easier.

Hey, I'm starting window farming to grow some of my own "organic" stuff- it really is expensive otherwise. It doesn't yield much but you can get nice peas A balcony would be great for more veggies and peppers or tomatoes will grow almost anywhere.

I'm also good with languages and have some other skills I can put to a good use by working from home, it doesn't pay much but it does get me a little extra on the side, perhaps you can find some additional source of income?

HealingWell, EHealthForum,PatientUK etc have sections related to many health concerns and you can view them as a guest, I'm not registered either.

I hope something helps.

Post back when you see that specialist, keeping everything crossed!