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sabrinabythesea

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 #1 
I am so discouraged. I'm 37, pretty much alone now in the world besides my cat, and I've gone back to school. Finally diagnosed with lupus in 2013 but it took a few years to find a good fit with a rheumatologist, as symptoms slowly worsened. After a few years of commuting to the city a couple days a week to take undergraduate computer science classes (my BS is in molecular biology, useless at the moment) and living with my parents (post divorce) and babysitting for my sisters (both now divorced) 2-4 kids at a time, I think about 60 hours a week, unpaid, since 2012, with lots of variation... last September I moved to my state's city to become a full-time graduate student (and lost my familial relationships for focusing on my own life instead of supporting them, how dare I - being cut off from kids I've been helping to raise has broken my heart, but that's so totally off topic). I'm on medicaid and it took much too long to find a new rheumy in the city. Developed chostochondritis (rib inflammation kind of)? And lived on prednisone and arthritis cream for a few months. And gained 30 pounds that won't come off.

Now I take CellCept and Plaquenil. My OG doc just gave me narcotics, for years, and I made the choice exactly 12 months ago to end that. Now I'm in so much pain I wish I could go back and keep the door open... but things are more and more tightly regulated.

The thing is, I want a fresh start on my life. I have a brain that is capable of fancy things and I want to use it to help make the world better. And I want to believe in myself. I was so scared of having student debt into my senior years that it held me back for much too long. But that's why I'm now working on a master's in computational theory. Then I plan to try for a ph.D in computational biology. And I'm good at this stuff, and even studying for exams makes me happy! I'm a college - lover, and my uni is the perfect fit for me. I even won a fellowship starting in fall, covering tuition and including a generous monthly stipend.

Except it disqualifies me for medicaid and food assistance, so I'll be spending lots of that stipend on insurance premiums and copays. And I don't get the full info sign-up make-choices packet til mid-August, and everyone knows it'll take months after I find a rheumy who takes my new insurance before he'll have a new patient appointment...

First Question: If I decline the fellowship, I can live on student loans and keep my governmental medical and food support. But one day I'll have to pay off an extra 50k because of that. It seems like a choice that would be great short-term, horrid long-term. And who in their right mind turns down a FELLOWSHIP? But they expect college students to be cool with being poor, and it's different when you're 20 and healthy and have parents back home who'll help you with needs...

That's all background. I have an internship this summer in a hot, hot state. The potential is incredible but it's not going well. My living situation is bad and I'm still, since the day I arrived four weeks ago, spending all my free time in bed with my lap desk. My commute home - walk, then bus, then walk - exhausts me. I've been a dedicated walker for a long time, but Wisconsin winter walking I love. Treadmill walking I love. Summer full-sun walking (even with sunblock) is torture. I've never had severe fatigue as a symptom before.

Question 2: Because I'm interning at a (wonderful) company in another state, I have no medicaid coverage and no room in my budget to buy a temporary plan on healthcare.gov, and since I'm not a resident of this state it's even harder, and then it takes so long to get in with a new provider. But my preventative meds aren't working. My fatigue and pain have skyrocketed, I actually make involuntary sounds at my desk from shooting pains and have started crying involuntarily in elevators...What do I do? I started with a 90 day supply of my preventative meds, and I take them, and I rest whenever I'm not at work, and I wear sunblock... I take fish oil, vitamin D, and a supplement that's basically tons of turmeric for its anti-inflammatory properties

Last night our neighborhood lost electricity for a few hours and it was in the 90s outside... even though it was dark and I'd had no sun exposure, I was seriously disoriented and confused and crying in 20 minutes (no breeze, total dark, windows don't open). I didn't know plain heat could make me so sick. I thought it was just sun. I think the official term is "heat exhaustion;" google says "heat stroke" only applies if you're, like, having seizures. But, again, I got very very sick. 24 hours later I finally feel like me. Is this a normal lupus thing? I'm from the PacNW so climate issues are all new to me.

My lupus symptoms used to be only masses of pain and malar rash and the required blood test results. Now, on preventatives, things are getting really bad. I'm scared. And I have no access to health care. I just read on Johns Hopkins that women my age are 50 times more likely to have heart attacks than women my age without lupus, and that children (not really an option anyway) are more or less out of the question. Especially being alone with no partner.

My biggest fear is related to how hard life with a full-time internship/job is. It's the absolute maximum I can handle, with no room for a "life" outside of the office. Do I really want to spend years and years earning a phD so I can be a professor and research computational cures for diseases and buy a farmhouse with masses of books and a tortoise...yes. But will I be able to handle the demands of working? Should I be doing college this late in life?

I don't really have alternatives. I have no network of people, I'm in a new part of the country, I don't have mentors who'd understand the complexities of this.

I just feel so alone and option-less and I'm finally kind of accepting that lupus might really severely limit the path my life takes...I've lurked on the boards for ages, you people are wonders.

My ramble is done. Any comments, especially the encouraging ones, or advice, or perspective, would be greatly appreciated. I hate having so many unknowns while being alone. Sorry my questions are so poorly focused. I just really, really needed to reach out tonight even though I feel like I'm being super inarticulate.

I've never had to talk about lupus before, outside my family, who just were not interested. But now it's part of every day at work... I came here knowing I'm aiming for an academic, not corporate, career, but also acknowledging that it's smart to keep open doors, to grow as a person, to try new things...

Lupus is in a major part about managing stress. But grad school is stress, in a big way. New city/state/job is stress in a big way. And I have an anxiety disorder on top. My life IS stress.
Robinj

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 #2 
I don't have an answer about your internship, but your statement, "Summer full-sun walking (even with sunblock) is torture. I've never had severe fatigue as a symptom before", is concerning...


Sun exposure increases disease activity. Some you can see and/or feel, others not.  You should never intentionally put yourself at risk by full sun exposure sunscreen or no sunscreen. Sun and heat are enemies for most of us. 

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sabrinabythesea

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 #3 
I agree, but I have no other way to get to and from work. I walk a long way to the bus stop, I ride the bus, then I walk the rest of the way home.
Robinj

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 #4 
Long sleeves, pants, wide brim hat etc will help. Have you tried Sunguard in the laundry?

http://www.sunguarduv.com/

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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
sabrinabythesea

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 #5 
That's good advice - except walking a mile in 90 plus degree heat with a laptop backpack and a duffel bag in long sleeves and pants and a hat will cause overheating. Which makes lupus worse too. Also, I don't have clothes that fit the bill with me, and I have no money to spare for a new work wardrobe. I am seriously poor. I'd forgotten about sunguard, thanks for the tip! But whether I'm in a skimpy tank top and shorts or a work outfit with better coverage, I feel really desperately sick by the time I get home and it's been building for four weeks. Plus stress has always been a major trigger, and I'm in a ton of it. And now they say fluorescent lighting is a trigger too, and I'm currently working in the basement of a 36 floor building 40 hours a week.

Avoiding triggers for the rest of my life is not possible. Like I said, grad school = massive stress. And this summer internship is seeming to show me that a post -phD career would be impossible. I'm trying to figure out a practical view of my future possibilities as a completely single very poor person who wants to contribute to society. I mean, I'm already 80k in debt! I'll need a full time high performance high pressure job just to pay that off before I'm 80. I thought that would be fine - it's what I wanted.

What I'm trying to figure out is, do people with life-limiting lupus either have families who support them or go on disability? How do I live a normal life? Does anybody get to do that or am I daydreaming? I've never been so sick.
Robinj

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 #6 

"What I'm trying to figure out is, do people with life-limiting lupus either have families who support them or go on disability?  How do I live a normal life?  "

For many, it is simply the "new normal". Which, unfortunately can mean altering life such as adjustments to work schedules or in some cases disability. But keep in mind, disability is not easy to obtain and a constant battle for some to retain.

Lastly, I am not exactly sure where you are, but there may be a Lupus support group in your area.


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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
sabrinabythesea

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 #7 
If I do "new normal" I won't be able to pay for food. That's my point. If there is a lupus support group in my area I wouldn't be able to get there without reducing my time in bed and exposing myself to more sun and heat to go to the meetings. Altering my work schedule is not an option and I won't get to go home and start health insurance again until September. I feel completely trapped with no options.whats the point of spending the next 7-ish years battling through school if I'm unable to support myself at the end?
Robinj

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 #8 
Just trying to give you suggestions, but honestly? You seem to have an argument for everything. Best of luck.
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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
sabrinabythesea

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 #9 
Oh, I do appreciate your suggestions. It's just that they don't fit my situation. I'm just trying to help you understand how desperate my situation is.

When you tell me avoiding the sun is important and I respond that that is completely impossible for me, I'm not being argumentative. I know avoiding sun is ideal. But I can't get to and from work without major exposure. I'm truly just trying to explain my situation.
Cakelady

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 #10 
I worked with lupus in a very stress fill environment. You do what can can to limit your exposure to sun and or heat.

I kinda think you want us to tell you what to do but we can't. What works for me might not work for you or 100 other lupus patients. None of us are rich. Disability is hard to live on but if you can go to school then you can work. And just because you have lupus doesn't mean you automatically get disability it's not going to happen. We have people who have been trying for years to get approved.


And yes I am married with 2 children one is 26 who has autism and mild retardation but still works 25-30 hours a week and the other one just turned 21 a week ago.

Good luck


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sabrinabythesea

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 #11 
Well, as I wrote, I was looking for advice and perspectives... not exactly being told what to do, but similar. Thank you for yours.
Robinj

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 #12 
At the end of the day, you need to evaluate if this is going to work for you and decide if pushing yourself is worth the risk of your health. If you made a decision that turns out is not working, then you may need to move back where you have support. Nothing to be ashamed of. 
Sometimes family and friends don't "get it" but if you need help, so be it.

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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
sabrinabythesea

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 #13 
Thank you, yes. It's a tough call. Tougher because there is no place I can "go back to" for support. When I said I'm alone, I meant it. Me and my cat. That's it. That's why I finally joined a lupus message board. There's nobody else.

And, to address other comments, going on disability is not something I "want." I want to work, after my 150k education is complete. My summer job and how sick it's made me already is scaring me that I will end up with a phD and be bedridden.

And no, to the person who said it, "if you can go to school you can work" is not always true. Spending most of my time in my bedroom taking online classes and writing computer programs and using email, YouTube, etc... last semester I attended two classes in person per week. On low-spoon days, I had the flexibility I needed.

That is not at all the same as commuting without a car to a full time job at a large corporation.

I created an account to reach out and connect with other people living with lupus and learn from their experiences, but I'm really starting to feel judged and discouraged by most of the responses that are going up. I guess people are people. Is this normal for conversations on here?
Sky

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 #14 
From what I've read; you have been given some Great advice. It seems like you are on a hamster wheel. I've been on that wheel way to long and it's crazy when you can't slow it down. But you can. Its normal When you are struggling with Active daily living along with a illness/disease. I would suggest you write down your goals. Is it to get better in your illness or continue your career. Then seek out a counseling service, state/city, governmental assitance. I hear you say, I want suggestions and I totally get it. Autoimmune diseases can affect the body, mind and spirit. You are not alone
sabrinabythesea

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 #15 
Thank you! That's what I need to do. I don't even know how I would live if I dropped out of school. No savings, no home... I need to do more research and planning. This was a first step, recognizing and articulating the problem. Thank you again.
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