I am recently diagnosed with Lupus and moderate RA, lucky me to have both. I am thankful to have found a doctor who tested and researched my history to give me a correct diagnosis...I have been in pain with my knees since I was a teenager..I'm 42! Also had five miscarriages, unexplained kidney inflammation, anemia, and low grade fevers. After hearing over and over, "You are just one of those people", I was actually happy to have a diagnosis and course of action. My outlook has been pretty good, and I've been determined to not let this impact my life, and to not be a "whiner".
That didn't last long!! Though I am still trying to be positive, I find it hard when I am throwing up and tired the day after my dose of methotrexate. Or when my elbows hurt and I can't comb my hair, only to remember that I may LOSE my hair because of the medicine. I hate that I am too tired at times to play with my 8 year old daughter, or that I don't have the energy to get up and go to lunch with her at school. I am frustrated that people who don't understand what this pain is like make light of it, or ignore it completely.
Though I try to be happy that there is a diagnosis for me, and all these years have not been all in my head, the lifestyle changes are difficult for me right now. I feel like I am too young to be on so many meds..on Sundays there are 8 of them!! Sometimes I think it may have been better to not know. Ignorance is bliss!
Anyway...just frustrated and it's good to vent to people who understand. Thanks for listening and for having this support group in the first place. Promise to not always vent! I'm sure once it all sinks in and I begin adjust, this won't seem so bad:)
I'm so sorry for your losses. You have been through so much, and it is OK for you to vent. I do my share of venting, and members here understand. This is an adjustment, and you can allow yourself to experience some grief, as you adjust to a 'new normal'. I understand how you feel, I feel like since my diagnosis, I've had to deal with more issues. I'll be having surgery on my right foot soon, and I'm feeling like its all from the lupus. I've had carpel tunnel surgery on both hands in the past two years, and I'll be having a plantar release on my foot as well. I wasn't ready to quit working, but its come to that for me now, or at least a change in how much I work.
Well it's never nice news to know you have Lupus or RA besides any other autoimmune disease but what i'm pleased about is you've got a good rheumo who as studied you besides you past to get a proper diagnosis for you.
Miscarriages come from Lupus linked with Antiphospholid antibodies in the blood which can cause many issues as this link explains and i'd double check with your rheumo to see if your ok reagrding this...as i also have it.
Kidney inflammation comes from the Lupus besides fevers with it besides RA and lupus also causes anaemia as i also that besides.
Methotrexate causes these ymptoms your going through but is also an excellent drug for SLE, and try and bare with it as you sound like you have strong determination which you need with Lupus and don't let it get hold of you mentally, it's all about fighting it.
Don't expect some people to understand as a large majority of us have gone through this because Lupus is classed as the hidden disease...unless your completly on deaths door people think your ok.
smc vent away and take no notice as i can't think of a member who as'nt it's a good way of releasing pressure and i know how you feel regarding your age as i'm 44 myself.
My love and thoughts are with you dearly. Hugs Terri :) xxx
Your welcome from we both and i do apologize fro previous speeling mistakes as i wear gloves while typing.
Oh you'll get full support as all members are so caring and spread there knowledge.
Well if you do have Antiphospholid antibodies, then 95% you have Antiphospholid syndrome also known as (Hughes syndrome) for short...you need to ask for definite and if the answer is YES then you need a baby asprin daily of 75mg which i take, it just keeps your blood thin enough and right.
I just got my blood work through my a phone app. The ANA and C3 are positive. I see the rheumatologist Thursday to discuss the blood work. I too am glad to finally know why I've had horrific pain for years and years.
I really hope your appointment goes well and your rheumo starts you on med to help you and best of luck for thursday and please update we all when you've been.
Love Terri xxx
Graveyardnerd said:
I just got my blood work through my a phone app. The ANA and C3 are positive. I see the rheumatologist Thursday to discuss the blood work. I too am glad to finally know why I've had horrific pain for years and years.