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Life With Lupus

My day


#1

Today is my day! New hair cut, new shoes, new clothes, new perfume, then taking myself out to lunch! Third day with a migraine but figure if I can work with one why can’t I go out and spoil myself for the day :slight_smile: shoot I might just take myself to the movies! Happy Saturday my spoonies! Always save one extra one for yourself! :slight_smile:


#2

Hi, Beck. I am so happy to hear you are focusing on yourself. Your day sounds wonderful. Enjoy!

Hugs,

Laurie


#3

Beck,

Your day sounds fantastic. I'm glad that you are doing nice things for yourself. I do question the movie with a migraine though, but if you want, go for it. Just don't over do it to much. You don't want to pay to much of a high price tomorrow.


#4

Enjoy, you deserve it.


#5

No movie but it was a good day, started a new migraine med that WORKED! Been through 5 dif ones and this one works. Of course I got tired around 1:30, so I cut my day short but I got to do everything I wanted. Jammy and Netflix and a long quite nap :slight_smile:


#6

Hi Beck, Thanks for taking some time for yourself. At times if I do not feel like going, I ask myself how I would feel if I stayed

at home??? Sometimes I can only stay until the intermission and other times I manage and forget my physical self.

Obviously if my chronic anemia is acting up and the wkly Procrit shots aren't helping enough.....or a flare is happening I cannot consider going out. I have migraines as well for the last 30 yrs. Finally, I began Botox injections every 3 mos. and as a success story I was able to reduce the M .over 75%. When I get one, generally 1 Relpax pill works and I almost never

throw up w/ them. Of course I have State BCBS ins. I only pay $12 copay. My heart goes out to ones that have no

ins. and have to suffer. When I have really good days or hrs. I keep a journal and that helps me get through the bad days or flares. Lupus for me is pretty advanced since I get give myself chem. shots and Benlysta monthly infusions. Wkly Procrit shots helps my chronic and allows me to drive. I am lucky that I did not have all of these physical issues while I was teaching (retired now 64). I feel blessed to have God, loving family, and a few good friends that support me the few times that I reach out to them. Sorry this is soooo long. Thanks. Peace, Helena


#7

I also journal, I feel even when I do talk to people it doesn’t make me feel better like they are just letting me talk. I find writing it now helps me get through the hard days. Some times I can’t write but a few sentences do to my hands hurting so bad, which only makes me cry :confused: so I write when I can. :slight_smile:


#8

Beck- congrats on taking care of you despite your pain…don’t let it control you! Anyone have suggestions on how to be in a relationship without the Lupus basically coming in the way of being functional and a contributing partner? How about putting a roof over your head and paying bills …still working full time and getting sicker as a result. Beginning to think disability is the way to go…ant feedback/suggestions? I try to be positive and feel like I am in a catch 22.


#9

Ha I don’t even know, it’s smack coming in between me and my boyfriend :confused: if your getting worse talk to your dr. And start the process to get on disability. Don’t make you self hurt more just to stay at work. Or work part time. I’m finally getting my dr to see how much I hurt and hopefully things will get going, I still haven’t see a rheumatologist :confused: staying positive is all we have. :slight_smile:


#10

Can you see a Rheumatologist on your own? Will your insurance allow it? You should be on some sort of medication regimen to help you. I am looking for a new rheumy…mine doesn’t even follow my bloodwork…I have to remind him…he feels my ankles and fingers and gives me more Methotrexate so i can get sores in my mouth and lose my hair. He is a quack. Working part time would never pay the rent…and very few part time jobs have benefits…my family has offered to let me live with them, but I do not want to lose my independence… I am a cranky biotch tonight…


#11

I have to have a referral from my primary to go. I go see her in a week to check up on blood work and practicaly beg her to refer me to one. I know how scary it is to think about living with fam again :confused: hope I never have too again. I was cranky a couple days ago, it happens


#12

If you had a positive ANA and you are symptomatic, you should be able to see a Rheumy…I hope she does the decent and Ethical thing and refers you.