Can't catch a break

[carriej22]

Hi folks,

Once again me making a whole new thread to whine and spread negativity. I honestly just don't know where else to turn, or who else would ever understand other than you folks.

So as most of you know I've been through the rinse cycle a few times over the past few months, in and out of the hospital, up and down and up again on pred (currently 60mg) and having my meds all mixed around. Puffers and misters and all kinds of cocktails... Anyway

Through it all I thanked god I had such an awesome job. Well, two awesome jobs. My main source of income was from the websites I designed. It allowed me to work from home on my own terms, whenever I wanted and how ever much I wanted or could. It was awesome. Plus, the pay was great too. I just found out yesterday that the company I freelanced for pulled their remote contract - which means my job is gone. Mine along with about 60 other people. It sucks.

So now, I am going to have to put in more hours at the salon which is rough. Standing on my feet all day and working on people is not easy. I love it though. I'm just worried how I'm going to be able to handle it, but I don't really have much of a choice...

I really didn't need this right now :( ... I went out for a drive today and just cried. No one understands. People seem to think it will be good for me to "get back to normal" and "physical activity never hurt anyone". Just because I don't look sick doesn't mean I'm not. My family keeps telling me "you can get another job". Who wants to hire a sick person? Who says I am even able to hold a job? For the amount of time ive spent hospitalized in the last few months, I wouldn't even consider myself reliable... I would be embarrassed to present myself to a new employer in this state. It's evident to me by watching me I am unwell. I can't stand still without shaking and sweating. It's pathetic.

I could so use a break... Any day now... Lotto would be nice LOL

[HopeinTN]

I know you've heard this before, but the begging is the worst. It really does get better. The symptoms, pain, aches, sadness, being scared… It helped me to start a list of what I’m thankful for and what I have to be proud of, then compare it to what sucks about this disease. You will be surprised and which side wins!

I had all the same fears and was given great advice on this forum from many brave souls and it's my turn to pay it forward. Al would be so proud! I'm single and own my home, so I was terrified, that's human nature.

I have a friend that is a stylist and can’t bear to stand all day, so she sits on a chair/stool. Maybe this is something you can do?

Any day above ground is a good day in my book! It won't always be easy but it will always be worth it!

I will be thinking of you and sending a big hug your way.

[Pete]

I'd like to think that there's another company that would want you on their "virtual" team. I hope your soon-to-be ex-employer offers job search assistance that you can access.

Wegs may sap your physical strength, but I hope you can stay strong mentally and keep pushing forward.

[Dirty Don]

I could so use a break... Any day now... Lotto would be nice LOL

Yes, agreed, you deserve a break...you're on the right track, believe me...it's just a potholed road...you're getting tougher each day, holding your own better each time you're on here. The job loss is a bump in that road...and you'll find a way to deal with the styling...you ARE resourceful! BTW, if you win the lotto, could I borrow your numbers?! LOL! Hang in there kiddo!

[annekat]

I agree with Pete that you could pursue getting other web designing work, since you can work at home away from the germs and chemicals at the salon, and it would be less physically demanding. Easier said than done, though, I know, so I guess it will be the salon until you are able to find the other work. You'll know before long whether the additional hours will take too much of a toll. Good luck!

[malin]

I am in the same boat as you, am going through my worst flare ever and at end of september I will be without a job. Trying to find a new one that I feel I could actually cope with is almost impossible at the moment. :/ I am trying to stay positive but its hard, the only thing I can do I suppose is apply for whatever jobs are out there and if I do get lucky and get hired, I will have to try my best but if it doesn't work out (ei, I am too tired/sick whatever) then I will have to start again. :/

[drz]

Sorry to hear about the stress for both of you having to try work when the Wegs dog has you down. I can appreciate and empathize with the financial stress that results when expenses greatly exceed income because of Wegs stuff since I have been living on limited fixed retirement income since my diagnosis that is greatly below my medical and necessary living expenses so I worry what happens when my savings are exhausted. This creates a lot of anxiety and stress which doesn't help with management of diseases like Wegs and diabetes that are made worse by stress.

I think a lot of us share this common issue of financial stress along with uncertainty of what will happen next with our health. Some here are lucky not to have the financial stress just like some are lucky to have a fairly good and stable remission from the Wegs stuff. Some here have other serious health issues that they have to try handle. None of us are exactly the the same but we often share enough common issues that we can understand the stress of others and offer supportive words of understanding.

We can't solve or change anything for others but sometimes the supportive words seem to help us feel better about our situation. It may help to remember that most of us have coped with some real tough things already from our illnesses which means we are pretty tough and resilient and generally can make whatever adjustments are needed to keep muddling through our lives and deal with whatever life brings us. Hope you both somehow continue to do so and that things get better for you. After all we don't have much choice except to play the cards we are dealt, right?

[drz]

I know several people who work from remote rural areas over phone lines and internet connections to do custom computer work with data base and web site designs or other custom program development. Some troubleshoot and repair computers remotely assuming they can get connected. If you have examples of good work you have done and promote it you might find your self with more business than you can handle since many small businesses like to buy occasionally or on a part time basis. Good luck.

[Lightwarrior]

I know several people who work from remote rural areas over phone lines and internet connections to do custom computer work with data base and web site designs or other custom program development. Some troubleshoot and repair computers remotely assuming they can get connected. If you have examples of good work you have done and promote it you might find your self with more business than you can handle since many small businesses like to buy Good luck.


This sounds like a great project for a Weg who has the energy to promote it. Wouldn't it be great if we had a Weg collective that identified needs and talents and matched them. My pred head is spinning in a thousand different directions. MARTA where are you????

[marta]

Hi guys, Brian just sent me a note to look at the forum and I had no idea where he was referring to but I found it on the first go.

So, Yes, drz and LIghtwarrior, it is a great idea, and I think we could do something with it. I'm just starting to think in this direction again after a long hiatus. (I just booked our Activity Centre for March 1, 2013 for the next PJ Day, so that part of the brain is starting to chug again).

But first to the issue at hand. Carrej (is that your name, sorry, I've been an absentee Weggie for a while) if you do web design, I could probably get you work right away. It doesn't matter where you are, web work is all remote naturally and I know of many people who are looking for web work around where I live. Maybe you can build yourself a web portfolio and I can almost definitely get you some work. Get paid by Pay Pal, I think it's all feasible, and you could probably make more money working on your own than for someone else. There is no benefits - but I imagine that with companies like this there isn't anyways.... so you'll end up ahead of the game in the end. I know it's super stressful but embrace it as an opportunity to grow rather than a setback and just focus on getting better. I will help in any way I can. Just contact me via PM and I"ll give you all my contact info and we can get this ball rolling.

First and foremost, take care of your health and don't stress because it does nothing but make things worse healthwise. I'm here whenever you need.

And maybe we can get together and start what Lightwarrior is talking about, that would be a totally worthwhile project.

[Lightwarrior]

MARTA where are you????

I knew it, I just knew it.....if I put the MARTA light up in the sky it's a bird, it's a plane no it's Marta, skiing into our lives, just as we need her. Thanks Brian. I love the way you think Marta, I'll brainstorm also but since I just moved and don't have internet access at my house until Monday then I most likely won't be able to share them until then. Good advice you are giving as usual.

[drz]

Great to have you back Marta and great to see the support for the idea that there is probably some good alternatives for Carrie and maybe some others here too. Nice uplifting experience to read the last posts in this thread and hope it helps Carrie feel better too. Thanks to everyone who posted encouragement.

[annekat]

This is a great idea... makes me want to go out and learn web design... I can really relate to the problem of feeling unemployable; even if we are physically able to work at least some, how do we apply for jobs when we are blowing our nose and coughing frequently, have moonface from pred, or saddle nose, making it look like we have snorted a lot of illicit drugs, and we get tired a lot faster than we would without Wegs. We would want to be honest enough to tell the boss about our health issues, or maybe not, depending on the job? And we really don't know, if we get hired, how well we'll be able to perform. I'm just glad I have a self-employed business, even though it barely makes any money, and I have disability and a winter seasonal job with someone who knows me well.

[KathyB]

I just finished reading this thread -- it is EXACTLY why our forum so important!! Someone has something to say and needs support. Everyone offers ideas and words of encouragement. Then the resources kick in and POOF the answers start coming in! What a fantastic forum filled with extraordinary folks!! Good luck, Carrie!!

KB

[Sangye]

Yay for Marta!! Thank you for swooping in to help. :thumbsup:

[marta]

Hey Guys, I haven't done anything. I just offered to help. I have to say though that I've had a huge idea over the last couple of days, and I think we can pool our resources and do something cool. I just need to talk to some techie savvy folks and I think we can do something great! So if you have computer literacy please PM me and we can see how feasible my crazy idea is. Carrie, Andrew (I already sent you a message on Facebook about it) anyone else????

My little wheels, they are a turnin'.

[mishb]

My daughter studied web design and computers are her love.

If there is anything someone from Aussie land can do to help build your ideas.....count us in

[drz]

My daughter studied web design and computers are her love.

If there is anything someone from Aussie land can do to help build your ideas.....count us in

If the group needs a name-- "Weggies Webs" or "Weggies Web Design" readily come to mind.

[Pete]

World wide weggie web?

[Sangye]

ROTFL Like Like Like Like Like :biggrin1:

[carriej22]

Wow just seeing all this now.. You guys rock! Been battling EVERYTHING this past week.. And now I am getting short of breath again - Looks like it wasnt the methotrexate after all since I haven't had that in almost a month. I think it's an infection that's coming back. BOO

I should have specified - I don't actually "design" websites.. My job was quite unique. I created the content or the words for the website. I basically "sold" the website.. For example, say if you owned oh I don't know.. a landscaping business, I would create the content aka "text" for the website. Which I would then send off to a designer who would design the website and basically copy + paste my text. Then the company I worked for would show it to the client... And voila. I have a little website design experience but not much - essentially I was a writer.

[Lightwarrior]

Wow just seeing all this now.. You guys rock! Been battling EVERYTHING this past week.. And now I am getting short of breath again - Looks like it wasnt the methotrexate after all since I haven't had that in almost a month. I think it's an infection that's coming back. BOO

I should have specified - I don't actually "design" websites.. My job was quite unique. I created the content or the words for the website. I basically "sold" the website.. For example, say if you owned oh I don't know.. a landscaping business, I would create the content aka "text" for the website. Which I would then send off to a designer who would design the website and basically copy + paste my text. Then the company I worked for would show it to the client... And voila. I have a little website design experience but not much - essentially I was a writer.

I bet we can work with that.