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Robinj

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 #16 
"I'm really starting to feel judged and discouraged by most of the responses that are going up"

I am sorry you feel that way. You are getting honest responses. No more, no less

"I would suggest you write down your goal
s. Is it to get better in your illness or continue your career. "

I think it will go hand in hand. One cannot continue without the benefit of some sort of control over the illness. 

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Sky

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 #17 
Your welcome. Yes it's extremely hard to define your goals. I think you answered your question. Recognizing the fact that you have a disease. Like Robin said, for many people, it's the new norm. We may resist but acceptance will only give the power to push through.
Cakelady

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 #18 
If you can go to school you can work. In the eyes of many and the SSA department this is this case. Is it right ? not always but it's the way it is. Sorry if that upsets you but it's the truth and I for one do not like to sugar coat anything and neither does Robin.

I am sorry you are alone. Look on the main LFA page for a LFA chapter nearest your. You might find some extra support there. Also they have other resources/help to get to and from doctors appointments etc. you might also want to go on twitter and contact lupus chat they might have other resources to help you.

Many of us here suffer and lot of us are on disability and a lot of us give our time and energy to this forum trying to help people. Where I live today it's supposed to be 100 degrees at 11 am it was already 90 and I do not have AC

Like I said earlier I wish you the best of luck

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Sky

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 #19 
Robin do not feel discouraged. You have a wealth of knowledge. When i feel like someone is argumentive, its not how/what their response is. it's the way I react to it. I'm only on this board to give information, experiences, and a listening ear. Everyone's experience and responses are different.. . You are always sharing so much new information on this board as well as others.
shutterbug

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 #20 
Sabrinabythesea- Robin is right in that you have to cover up to survive the walks you are taking. Sunblock isn't enough for most of us lupies. I am one of the extremely photosensitive people who can't go in the sun or under fluorescent lights. Everyday, regardless of weather, I have to have long pants, long sleeves, a wide brimmed hat and even a face mask. Yes it is hot. My only way of not becoming completely overheated is to wet the face mask so that it is cool on the back of my neck and face. Today I have an appointment with my eye doc and it is supposed to be about 110 where I have to go. There is no easy fix. Sun guard works great for cotton clothes. Find some nice breathable cotton, sunguard it and get a big hat. There are also UV parasols out there if you want to give one of those a try.
Cakelady

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 #21 
Shutterbug were you in my area
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crazyworld1

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 #22 
Hi Sabrinabythesea
I've just went on the Boards and found your post. I felt that I just had to respond to you. I am newly diagnosed at an advanced age and it was very hard to wrap my mind around. But you, I want to offer you all of the encouragement  and "atta Girl" that I can find. In spite of all that you are going through, I think staying in Grad school as best you can is the best for you. You will need to reach in and get MORE strength and resolve that you didn't even know you had. I saw that someone suggested that you look for a support group near you. That is so key. I came to the Boards when I didn't know just what do do and my family support group was limited. I can empathize with the family situation. Hopefully, if you are able to get into a support group, you can find a good friend among them.  I hope that you find some resolve and peace in your life.
sabrinabythesea

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 #23 
Oh, thank you! You are the encouraging person I was trying to reach. I know the lupus 101 lessons, sunblock etc. And I have continued on as I started. I do what needs to be done every day no matter how I hurt, no matter how tired I am. This is my life and I claim it.

I might have found a resource for free lab tests today but I won't get a callback until next week, and that's hard for me because plans help so much and anxiety is my mortal enemy. I'm just really scared that this weekly worsening of my outward symptoms means organ damage is on the way. But I have an anxiety disorder. I depend on the perspective of others to help me stay in touch with what's reasonable, what's real, what I should worry about, when I should take action.

When I was diagnosed in 2013, my family physician said "this will never affect your life much" and started me on a course of heavy daily narcotics. When children I had been taking care of for years were victimized by their father, who never faced justice, and my own unhealed childhood was triggered, on top of the unbearable belief that I had failed to protect these children that I lived for - the pain got worse. My blood test scores stayed in the non-emergency range, I tend to a positive but not sky-high ANA but bad anti-chromatin levels on blood tests. So my physician added narcotics patches to wear on my skin, while still taking pills and anxiety meds. I'm so glad that alone didn't kill me! Last June I gave up all narcotics cold turkey and found a new rheumatologist who put me on actual lupus meds. My immunosuppressive dose was too high and I got a severe infection and had to drop out of my summer course in Android app development...

Last September I became a full, real grad student, at 36. I moved to campus in the city (I had been living with my parents as a babysitter for nieces and nephews and a companion for my mom and part-time commuting/online undergrad student to get the computer science credits I needed to start grad school - my BS from 2003, in molecular biology, was not much use on my new path.) I was off the immunosuppressives so I could heal from the 6-week infection that had wrecked summer school. And, it's my fault, between moving to an urban area and learning to navigate that and homesickness and guilt for "abandoning" my family, I didn't find a new rheumy as soon as I should have. When a new big terribletriggering thing happened, my lupus flared in November and I developed chostochondritis? Rib inflammation? Everything hurt. I couldn't sleep lying flat for months. Because it took months to get a new-patient appointment with a rheumatologist in my city. Before then basic constant pain and swollen fingers had been my struggle. No big deal.

So my new urban physician gave me prednisone for a few months. It was the best she could offer, she was great. Eventually, I met my new rheumatologist and started a combination of management/preventative meds that worked really well. I thought I had found a good balance.

I'm not going to grad school for shallow reasons; I want to give myself an intellectual life. I want to learn more. I want to contribute more to this world. And, true, I want to believe in myself. There's not time enough, even in a good long life, to read and learn and see everything! But I have relatives who, a decade from now, will need somebody who can support them. Terrible, horrible abuse has hit every generation of my family that I've been alive to meet. My dream isn't just to have an intellectually challenging job, but to be able to afford a farmhouse with spare bedrooms always ready, and ducks, and books, and a tortoise. And cats, of course! For the young'uns and the old' us alike.

I try to make the world better by examining my thoughts and opinions to stay aware that the "little" compassionate choices you make - smiling and chatting with a person on the bus even if they're obviously on drugs, or sharing your lunch with a homeless alcoholic - these small things are changing the world as deeply as the big things that make us feel so powerless. As a teen I read the last two paragraphs of Middlemarch by George Eliot (a woman, publishing under a male pseudonym, like the Bronte sisters). It's worth looking up.

The thing is, I'm finally facing how serious lupus can be. 50 times more likely for a heart attack? One in three face kidney issues? My meds can destroy my liver, even my retinas? I want to be a provider, a caretaker, I don't have time to be sick myself, I'm needed... but I worked from home the last three days. My home state Medicaid doesn't cover out of state medical expenses. And I felt so healthy when I finished finals and rented a car and packed up books, yarn, and cat and moved to my summer internship.

That was five weeks ago. Every week I'm sicker. Even with compression knee highs, just walking to/from the bus hurts. I listen to music and look at trees. When I'm not at work (or, once a week, at my favorite place - the grocery store! So relaxing) I'm sitting in bed doing things. I take my meds, avoid the sun and heat as much as I can, but I keep getting sicker. And I'm scared, both about what this means for my future and about what's happening to my organs. I'm trying so hard. I'm working so hard. When I get "home" after work, my last part of the trip is to take the uphill driveway to an uphill stone path to the porch steps and climb to the bedroom I rent on the second floor.

Even with compression stockings and anti-inflammatories etc, I get shin splints walking a block. My calves cramp up, my knees are stiff, my ankles burn. That final uphill movement - my shin muscles have lost their elasticity. I hobble.

I love the support group idea, but it would steal from my time in bed and it wouldn't give me peace from worrying about my stupid kidneys and fevers and fatigue... all the symptoms I never had are here. Maybe in fall, back at college, I'll find a group. Life by bus and walking is isolating, especially combined with poverty.

That's all. Just, thank you for the encouragement. I guess if I die before I get my phD and a job and a house for the people I want to take care of - well, that happens. That's life. I could get hit by a truck tomorrow too. I need to keep aiming for my goal.
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