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rockstar!
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Discussion Starter · #1 ·
Hi everyone,

I have been away from a computer and the internet for over two months now. I wanted to check in and say that I hope everyone is doing well!! As for myself, I am struggling. I finally saw a new rheumatologist and he says that I have been greatly undertreated and believes that I am now having CNS involvement :( Not pleased with that, but I'm not going to freak out unless something crazy shows up on scans in the near future.

For the time being, he is trying to figure out how to change my treatment. My previous rheumy thought my low WBC and platelets were from the methotrexate, so he took me down to 12.5 mg/week. The new rheumy sounds like he wants to increase that greatly, possibly as the first choice...but he also talked about looking into other immunosuppressants and possibly looking at the biologics as an option. I'm feeling so sick lately and I go to work so that I can live, but I feel like I could just collapse at any given moment and my life will crumble. It isn't a good feeling. The sudden headaches and migraines are simply awful and I can't get them to go away. They're almost always present...its just a matter of how severe they are. My Keppra (anti-convulsant) has been increased to the maximum dose possible due to breakthrough seizures...things just aren't going very well.

Anyway...I hope you all are well. I have a lupus walk that I'm participating in on May 18th and I've raised over $1500 for the walk :) Yay! If anyone has suggestions as to how I can deal with the stress of work without making myself sicker, let me know. I'm really starting to struggle with it a lot. I don't know if it means that I can't handle 40 hour work weeks or if I'm just not in the right job...but something needs to change. At least for a while. Someone at work suggested that I apply for donated sick hours, since I only recently started accumulating mine. I just don't know if it will help to take 2 days off...I feel like I need a month or something instead (ha!). On the plus side, I did get the chance to take my dogs to the park today for an hour and it was MUCH needed. I felt so much happier afterward.

Okay, that's it! Take care, everyone

kit
 

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kit! So good to see you again. Did you ever move? It's been a long time since i was on the board and so were you. Last time I talked with you, I think you were considering a move up to my neck of the woods.

I'm really sorry things are going so badly with your health. I hope it all gets under control soon. But what a good thing you've done, raising so much money for the Lupus Walk. Congratulations!

I will watch for you in chat. Hope to see you there soon. I'm not on the computer in early evening any more. Schedules have changed around here. But I will make a big effort to show up.

Hugs,
Sunny
 

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Hello Kit,

I'm glad to have news of you again but wow, you have been having a real tough time of it.

It sounds like the new rheumy is working in the right direction but it's going to take time.

I was in the same situation as you work wise and really thought I couldn't afford to reduce my work time or stop. I mean, on paper, I couldn't but then I basically hit a brick wall and the rheumy said enough is enough and refused to let me work. Of course, I am lucky in that I have a wonderful husband who has been trying to fill in the financial holes. It hasn't been easy but I was off work full time for almost a year. I have now started back but a very very reduced timetable. I am only authorised to work 14 hours a week by my doctors and am on health insurance for the rest. So, I work mainly from home doing my translations 14 hours a week. I have no idea about whether it will be finacially viable in the long-term but once you stop stressing about money constantly you suddenly realise that you just can't do some things.

I'm well aware that reducing or stopping for a while just may not be an option for you financially but if it is, you should think about a longer break. 2 days just isn't going to do it I'm afraid. The problem is that if you let it go too long like I did, it then takes even longer to crawl back from there.

sending loads of hugs,
Katharine
 

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It's so good to hear from you again. Sorry to hear things aren't going too well for you though - maybe the new rheumy will get you on a better treatment regimen soon. I just read an article about children with epilepsy being treated with a high fat diet and greatly improving their condition. I read it and wondered if it works for adults too!

Do you have the anticardiolipin antibodies or lupus anticoagulant? I can't remember right now - but those are often implicated as a cause of migraines and headaches so that's something else to consider. Treatment with blood thinners can often greatly improve migraines degree/frequency.

If you have coworkers willing to donate sick time to you, I would take them up on the offer and take a solid week off. There was a similar program in effect where I used to work, and I took advantage of it to keep a paycheck coming in until I went on disability payments.

Hope things get figured out for you soon... take care!
 

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Hi Kit!! :wavesmile:

Good to hear from you again :bigsmile: I'm sorry you have been so ill though and they are trying to sort you out. I hope the sorting out happens soon (((((((Kit))))))

love
Lily
 

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Hi Kit,

I have been wondering how you were. Sorry to hear things have taken a down turn. Hopefully this new doctor will be able to get you stable.

Enjoy the walk. Thank you for your fundraising efforts.

Take care,
Lazylegs
 

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Hi Kit,

It is good to hear from you. Sorry to hear that you are feeling crummy. :(

I hope they find a good treatment plan and you get to feeling better.

Hang in there.

Lyn
 

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rockstar!
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Discussion Starter · #9 ·
Thanks for all the responses. I spoke with my supervisor at work and am working on getting a week of donated time off and also getting documented for FMLA in case I need to take a leave of absence. My supervisor recommended that because then it will keep me from losing my job, even if I had to take 3 months off work.

I have my doc appt on Tuesday and I'll find out what hte plan of action is there. Maia -- the high fat diet (as far as I've heard) is mostly successful with children. I don't know that they've had much success with adults. Keppra has worked really well for me outside of when I have flares or infections.

I wish (WISH) that I could work part-time. My waaaay higher up boss at work (whose wife has RA) has told me that we'll look into that as a longer term option if I need to...he knows that I'm struggling and wants to help. My mom wants me to go part-time if necessary, but we'll see.

Sunny -- I am in your neck of hte woods these days :) I took a nice trip to Whidbey Island yesterday and really just needed that. I am beyond exhausted today, but I needed to get out of the city. I wish I could live and work on Whidbey...I miss feeling like I'm closer to the woods :( I have been having a hard time being in the city lately. Ugh.

Anyway....miss you all!!

kit
 
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