I’ve only had the lupus diagnosis for a few months and sorta relieved by it. I have had medical issues and not been “normal” for as long as I can remember. But everyone alway seemed to brush it off or made me think I was crazy. So I feel like I am not crazy anymore. However I still find it hard to have any support at all. I work with the public and have always had a job working with the public. So everything that goes around I tend to catch. I am currently taking methotrexate and I know that doesn’t help the situation. I have 2 children (8&6) and feel like I am missing out on so much of their lives. My husband thankfully is amazing and has pretty much taken over anything that needs done. I just don’t know what to do anymore. If I quit working I lose my insurance and of course money. But by working - I get sick all the time. And by the time I get off work I am so exhausted all I can do is go asleep. The people I work with are not supportive and just get mad at me for missing work. I just don’t know what to do anymore. I’m 28 and pretty much feel like I am stuck choosing no life or no life! Thank you for letting me vent and for any advice anyone has.
Well with young kids you are going to catch every bug that goes around anyway- kids seem to get every new bug going around and then share with their parents! You could look for a job with less public contact and lots of handwashing will help too. Me I just trucked through it - throwing in the towel and staying home was never an option for me. I never stayed home with the various viruses either- just took medication for the symptoms and went on in. Staying at home does not shorten the length of time of the illness studies have shown so I preferred to be at work - It is frustrating though you do feel like you catch everything going around
I stopped working for good in April 2013… I was a very busy hair stylist/colorist for 14 years so I saw many clients in very close quarters. . Thankfully my clients were considerate enough to reschedule appointments when sick but I had no control over the stylists and there clients that sat a foot to the right and left of me all day! While I was still working iwas on methotrexate too and cellcept so that’s when I decided to beef up my immune system because unfortunately most of the public doesn’t think or care about immuno suppressed people. . I started taking b12 complex and a shot calodial silver every morning and and I never caught anything! I swear even before I got sick the past year 1/2 I caught every little cold and bug going around but back then I never took any vitamins or supplements, I was young and invincible lol:) my daughter is 15 now but I remember the days of lots of little kid germs … if I was sick then like I am now I’d be worried like you too. . Definitely talk to your Dr first before you try anything especially since you’re on medication. The colloidal sliver really has a lot of benefits and healing properties… My best friend always helps educate me on different options to help with the integrated/holistic side of my treatment. I’m on cytoxin once a month now and my condition has gotten very serious very fast but at least I’m not battling every little cough and cold on too of everything else yay! Immunosuppresants are a main, important part of our treatments as lupus patients but we still need to keep a balance 
By shot I mean swig of colloidal sliver, not an injection lol
I can relate to your issues. I’m 28 with a 2 and a 4 year old. I feel like the ‘worstest mommy ever’ because I’m so tired and I can’t play with my kids on the floor or stay out in the sun too long or play in the snow. I work as a substance abuse counselor and every time I have to miss work I have to cancel on people that are also suffering from chronic conditions. In my situation my husband is a stay at home parent so my income is it. I love my job, I love my kids. I HATE LUPUS. I just want to be functional again. (Sorry had to rant it out)
Thanks everyone! And Sara I understand, it’s terrible and everyday my youngest when he gets up asks if I’m sick today? And that’s terrible to have to see him wonder every day if ill be better or not. I think if I loves my job or the people I worked with were even considerate of what I was going through i would feel differently. But none of them care. They only care about when I will be in and they won’t have to do anything! Maybe ill start looking for something different to do. Thanks again for the replies!
I feel so much guilt when it comes to my 4 yr old. He’s autistic but I’m always truthful to him about how mommy feels. It broke my heart when he knew I was in a lot of pain and asked if I was hurting. My husband has taken over everything and still works while I get to stay home and rest. I always feel guilty but you can’t help it. On my good days I do everything I can by playing with my son on the floor or go places with him and help my husband with everything. I had to go on disability because I couldn’t work with all the pain and the memory loss and brain fog had gotten worse. I take b12 and multivitamins to try to keep my immune system healthy but my son brings everything home from being in preschool. Sending you hugs:)
Sherbear, I’m sorry, yes you are right it’s so hard to not feel guilty about everything. And sometimes to even wonder why me? And I never come up with an answer to those questions! Which in return turns to me getting mad! I have thought about going on disability. But it all is so confusing for me. And I’m thankful for days I can get out of bed and go to work. But I also know if I didn’t have work to worry about on those days I could work on other things that would give my husband a break. He is my second marriage and not the father to my children- he is a saint for caring for them and doing as much as he does. Their real dad doesn’t do much for them or help out with anything. I’m just scared of the lifestyle we have to take with the decision of disability my husband is a school teacher so he doesn’t make much money; and we just bought a house which actually is what helped come up with the diagonsis of lupus. How did you start the disability process?
Crystal,
as your meds take effect, you will start feeling better. Your husband sounds amazing and that is very rare...I have one of those, too.
Explain to your children that although there will be times when you are tired and your body is telling you to sleep, as time goes on, you will begin to work around these issues so that you can spend more time with them. i.e. I nap before going out, or plan on a "no day" after going somewhere more than usual.
The first year is the hardest and hopefully you will find your rhythm.
Big hugs,
DeAnne
Hi Crystal, I’ve been on disability for 20+ years now. I was first diagnosed with fibromyalgia in 1990. My doctor then, who I was also working for as a transcriber, told me it was time to give up working and even wrote a letter for me to give to the judge explaining my condition and why I shouldn’t work. After 3 long years of applying on my own, I finally went to a lawyer and was finally able to see the judge in person and state my case and was awarded my disability at age of 43. Last year I was diagnosed with lupus but really think I’ve had it all along. The difference in me now from then is a rheumy diagnosed me.
One great thing about disability is that even though you get a check each month you can still do part-time on the side as long as you don’t clear more than$500 a month from it. I had an art gallery for about 10 years while on disability but it wasnt profitable enough to clear over the$500 a month. I did have to finally give it up as my health got worse and I was having to close up earlier and more often till I couldn’t even pay the rent on the building anymore. I really hated having to give it up but I knew it was time to take care of myself. Luckily I have a very understanding husband of over 43 years. I try to do as much as I possibly can but some days, especially when it rains,I can barely get out of bed all day and I do feel guilty when he works all day and when he comes home he has to cook too. I’ve been fighting the flu for the past two weeks and I’m so tired of being sick and tired. It’s nice having this forum to go to and vent sometimes. Hang in there and may God bless you during bad days.
Hi!, that is okay for the feeling that you are going through ,for us Living with Lupus! Smile Always remember that you are Not Alone!! We are here for what support that we can give to our (you) family member . We are ALWAYS here 24/7/365 , it just takes you to log in!!!Well hope that this comfort you take care and talk with you soon…Beverly l.
I am 56 and raised two boys that are now adults. I work from the time I was 13 until two years ago. I to worked in the public arena and caught everything that was going around. I was always sick and my coworkers took it out on me. My family thought I was crazy, I thought I was crazy! Working for me was as struggle, but somehow I was able to do it. Looking back on it all now, I know I took a lot of time away from my family because I was so tried and or sick all the time. My boys never understood why I couldn’t do things with them all the time. I was on a guilt trip until I received my dx in 2007. So yes, I was not crazy, just sick with a disease no one could see. Then two years ago the doctor told me I couldn’t work anymore. It turned my world upside down. I loved being around people. At first I didn’t listen and got really sick four months later. That was it I stopped working and now I am much better for it.
Believe me it is hard not to have the money coming in, had to make some big adjustments! But it can be done if your health depends on it.
As for my boys, they now see what this disease can do and understand it better. They never give me a hard time anymore. This hole disease is a big adjustment for everyone involved and it takes time to understand and come to terms with it! But you are not crazy! Just do some soul searching and figured out what your priorities are.
I came across an insightful quote on worry by a Dutch Christian,"corrie tenboom:"worrying Is caring tomorrow’s load with today’s strength-caring two days at once,"it’s like moving into tomorrow ahead of time.“worrying” doesn’t empty tomorrow of its sorrow.it empties today of its strength!! My dad use to always say,"life is easier than you think Celeste,try to accept the impossible,try to do without the indispensable,try to deal with the intolerable things in life and try as hard as you can to smile at everything…that has been hard with lupus,my dad passed away over 20 yrs ago,he didn’t get to witness my lupus issues but I do remember a lot of what he said to me growing up,He raised me without a mother. I always ask god for true wisdom and advice,because I believe he has a monopoly on that…good luck I will say a little prayer for you and your family,and I hope you feel better soon…Celeste. "THE WILL OF GOD WILL NEVER TAKE YOU,WHERE THE GRACE OF GOD WILL NOT PROTECT YOU…
I believe god has placed a level of wisdom in people that endure lupus!! None of us are perfect parents,and we aren’t,because perfect parents do not exist…you can still raise good kids,so don’t be to hard on yourself ladies…we are all Heros of our own story!!!
Thanks everyone! It’s just so hard to figure out what the right thing to do is. I like the feeling of importance at my job. But lately I’ve barely even been there - it doesn’t matter. But I also feel like I’m trading my health for my job and they don’t appreciate exactly what I am giving to them. My kids are also losing there momma- which kills me. I worry that one day my husband will realize there are “normal” women out there and find someone he can enjoy life with. I will be doing some serious soul searching in the near future. Thanks everyone!
Well said!! The will of God will never take you, where the grace of God will not protect you, well said…Beverly L.