Not even sure how to start. I found the job of my dreams doing what I love and about to finish my degree. My lovely diseases have come on with a vengeance. I have missed a lot of work and school, fighting with husband over money and the fact that I have trouble dealing with the home and child. Usually He is very understanding, but recently not so much. I am having major anxiety over the thought of loosing everything (job, marriage, and health). It is hard as hell to convince people that you are really sick and that losing my coworkers trust is just unbearable. I advanced quickly. I just get it when working with animals, wildlife or domestic. The only reason I went back to school was to get the stupid piece of paper that said I could do what I have been doing for years. Another emotional blow was that I had to euthanize one of my rehab animals. I had to put down my raccoon. She fell ill quickly, she was paralyzed within 2 days. I have had animals pass, or knew the were so I'll or injured that logically I knew I had to do it. This hurt so bad, I do not like to play god. As much as I google, and read forums, blogs and such. There is no answer, no real guide to our illnesses. I'm a type A, I flipping hate not having answers or plans A,B and C. Its late and I'm rambling. Just so scared, its like stepping into an unfamiliar pitch black room. Is the boogie man gonna get me or am I going to walk right into a wall. I am my own worst enemy.
I totally understand you!!! Last year, I had to give up working my dream job due to a major lupus flare up. I have never been so upset in my life
I had to make a choice to take charge of my health and be there for my family. To me, my job was part of my identity but I had to reshape my thinking.
It seems a lot of us here with lupus or autoimmune disease are type A personality. I was a massage therapist I loved my work. I have not worked in 7 years. It seems like yesterday. For me this whole process of getting better even though I am not feeling well at this time and can not work is about learning who I am in a deeper meaning.
This is most challenging and yet has given me the most gifts.
I truly hope your family stays together.
Stacey, I totally get where you are coming from. When I am “on” I am amazing ( if I can brag for a moment) but Lupus takes that all away. We are constantly behind on our bills because, frankly, we need a second income to stay afloat! I have my own business but it is just me and if I am not well enough to work and have something to sell( Imake and sell homemade jam) then, obviously, no money. This is ususally the time i sell but it looks like another season screwed over by my disease! I too read about autoimmune diseases as much as I can and try to stay educted on research, etc… I feel better having all the facts. My rheumtologist does not seem to know what to do with me, medically, right now. It seems like every few few years I stump a doctor and its almost as if they look to us for guidance. i have no idea! I am always willing to try something else but the worst is feeling like they really are going to run out of drugs to try! That scares the hell out of me! All i want to do is try to make a go of my business and lead a somewhat normal life. It all seems to be beyond possibility.
Oh Stacy, I'm so sorry! You sound so much like me, because I too had my dream job, supporting a NASA mission. I went to college for 12 years to get this job, 4 years for my bachelors, 2 years for my masters, 6 years for my PhD. I too was a type A, working 60 - 80 hours a week, and I was a good worker, well thought of by my colleagues. I had Hashimoto's thyroiditis and psoriasis, both of them autoimmune diseases, but they were under control (so I thought).
Out of nowhere I began to experience many odd symptoms, eventually became so ill I was in a wheelchair. Since 2008 I have been diagnosed with: RA, fibromyalgia, autoimmune hepatitis, celiac disease, and of course, SLE Lupus. In 2010 I was diagnosed with Lyme disease, as well as other tick-borne illnesses such as babesiosis, Bartonella and Ehrlichiosis (HME). The Lyme disease likely triggered many of the autoimmune diseases, since I've probably had it for many years.
But the bottom line here is that my body was overwhelmed with serious illnesses. I fought hard for YEARS to keep my job, but finally, after a full year spent working from BED on my laptop, I accepted the inevitable and went on disability leave in 2011. Of course I was devastated!! I know that I will never be able to go back to work in that same field... I'm 58 years old and still sick, although I'm better than I was. The lupus is somewhat controlled, but when I flare, I can be in bed for days. How can I hold down a job? I can't, because I already have a full-time job fighting my illnesses.
Beth Hodges said it very well... you have to decide that your health is the most important thing, you need to take care of yourself, for the sake of you and your family. And your job is NOT you... there are other ways to define yourself. Of course I hope and pray that you are able to keep your lupus under control and keep working, but if you cannot, remember that there are many, many of us who are with you in this. We are here for you!
Take care,
JoAnn
Thanks everyone. I am still trying to figure out how to handle all this. My biggest fear is the financial burden lupus and all the freakin other issues will create. I have been destitute before, scary place. How are we suppose to hold a job, keep insurance, and pay for medical care when your check is very small due to missed work. I make to much for any government aid. Such a crappy situation.
Stacy! Girl, itself ur pain! This just sucks. No doubt about it. But not always and not consistently. Just more than most. So what? Bet you can make me a list of like 5 things you have and are grateful for right now! Do it! You know u wanna. Here’s one: I’m grateful you wrote so I don’t feel so alone when I have a sick as a dog day, like today was. So thank you Stacy, I feel less alone today. Blessings!
I believe that we all,at one time or another, felt the way you’re feeling now. Take time for yourself and do your best to prioritize. Take one day at a time, and be kind to yourself. Possibly getting information on SLE and asking those you love to read the information, perhaps then they will have a clearer understanding of what you are living with everyday. Bless you
Stacy,
Yes, it is a step into the unknown. I get you. Guess what!? You will come out of it. You're spread pretty thin right now. Part of getting to the other side is to evaluate what is important. And yes our partners freak out, esp the XY kind. Sometimes they feel helpless and don't know what to do and get angry because the can't fix it, help you or protect you from it.
I lost my house, job, friends, family and independence to a degree and most of all my health. It's not just a matter of making do, but I have found out being angry about it all makes things worse. My friends, whenever I see them, have different opinions about how my life has "gone awry." I keep having to tell them that I am alive. I couldn't hold on to all the stuff that was happening to me. I just had to let it a lot go. Backing off didn't help my relationships, but it sure helped me.
I know that my story is not yours. But, what the hey, we have our challenges that we have to live and deal with,
A day of feeling good is a treasure for me.
You got to hold on.
I really feel for you how difficult it is to feel you have everything going for you yet it's crumbling... In many ways that can be more anxiety-producing than how to get things going after a low point. Any of the things we deal with living with lupus is a rock or a hard place or a quicksand pit or rough waters to stay afloat in... One thing in common though is that letting go of the STRESS and anxiety portion will greatly improve your state of health and also make you more effective at carrying out the things you want to accomplish. Letting go will be an important part of it too... I don't know if people can change from type A to type B, but you can work on attaining skills from type B! I used to be very type-A in some ways, very type-B in others, and I've embraced more of the B in coping with the illness. One way to calm your mind is to meditate. I always feel I "don't have time", yet I waste so much running in circles of stress that I should commit to it and hope it helps me be more effective in my actions and reactions!
As a type-A person, I'm sure you'd like some concrete suggestions as well as the understanding voices we can offer when those are missing in your personal life! Here are some systematic ideas that come to mind for your scenario:
It may be better to simply state (with a doctor's note) that you need temporary medical leave from work. This will likeley allow you to get better (and thus perform better when you return), or at least have strategies for how you will manage balancing your workload with home duties (i.e. setting up support to assist your husband when he needs to take on more responsibility.) Talking to your employer, you don't have to even share many details, and instead you can emphasize how you feel the temporary leave will restore your full capacity. If the temporary leave isn't enough, or any other reasons not to back right away come up (the family things), that's when letting go comes in. Maybe there will be another job or a way to get back into this job after enough time to recover. Maybe you can come back half-time and work up to it. Keep in mind that your new certification makes you more employable at a new place if it comes to that Being at a low point allows for a lot of creativity in what to do next, so get into that while you have more time to think while you're healing, and cherish it while it lasts!
During time away from work, you'd also be able to work on your skills in letting go of the idea of working. Even if it sounds awful, it is an important thing for us to try on for size, because it may become a reality at some point even if not now. For me, it included putting on the hat of never having children (like I've always wanted to), in case that's something that can't happen for me. In reality, everyone faces these questions, most just don't have the reason to think of them explicitly. Try to make this a process of pondering, not worrying (this is hard to do!) Feel how your life is, or can be, when you take care of your health and family. Is this something you can do for a while until you're better? In the future if it becomes necessary again? I know this potentially isn't an option financially (beyond the point of having paid leave, if you have it), but that in itself will help your husband realize he needs to find a way to support you to enable you to help support the family financially. It may not feel fair to him, but it is the reality (very unfair to everyone in our lives, most of all us living with it inside our bodies!) Having it get more cut-and-dry that way, could help him see it, rather than requiring a vague empathy when he sees you doing everything and now you're slacking off. "Either I can overwork myself until I lose the job and the health to do anything else in the family, or I can slow down to get myself healthier (taking on some more family things while home, but not too many) and return to work so we can try to normalize our lives, with more experience and back-up plans in our mindset." However, there is the risk that putting your health first for a time will be judged, by family and work, as 'falling off the bandwagon' from how you once were.That's how my family treated me (parents, I'm young-ish and unmarried.) What I've learned is that saying less can be more; "the doctor and I feel it's important to reduce my workload and stress for a time to see if I can get back into shape to succeed." Appealing to their compassion often backfires, as they see you as complaining or making a big fuss about something to make excuses for what they already see as slacking. But as we all know, we can't do much of anything without our health, and trying to keep afloat without the time to get better is an uphill battle that may be counterproductive. If you were in a decent remission before, there's a very good chance you'll get that back... So long as you take care of yourself for it to return. That would be the point to emphasize to everyone: I'm taking this time now so I can get back to functioning as well as possible, rather than continually sliding downhill until the point of no return! In the mean time, hone some type-B skills, and address anxiety as one of your symptoms.
Take care, and I hope you can manage a feasible solution! Getting your mind clear of the anxiety will make it so much easier to take the right path (which may be totally different than the scenario I described.)
Brynn