Hi every one ! I’m chasity 26 yr old mom of 3. I haven’t been diagnosed yet I go this week to meet with a Dr. I’m actually having tons of symptoms right now for the 19 months - some days everything is minimal and I function normally but the last few weeks each day has been filled with pain , cute little butterfly rash ( its very light , almost like a blush but the texture is a little different) fatigue is unreal and swelling is pretty bad. I’ve had a sore throat for 8 weeks and have lost so much hair I am getting thin spots.
The one thing that kills me is I can’t be the mom I want to be. My 3 yr old begs me please run with me please go round the rosey with me I try but dizzy spells and no energy make it hard!
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Hi, chasity, welcome. I'm glad you are here.
Chasity,
Hang in there. Do the best that you can and know that it is your best. That is all that your kids need from you. We are here for you. Any questions you might have, it's a great supportive group. Good luck at the dr. and I hope you get some answers and help.
Hugs,
Reddog
Thank u reddog! I’m trying!! I am really glad I found this group!!! I’ve been going crazy not knowing anyone I can talk to or ask questions about this! Its hard talking about something I don’t understand because I can’t explain anything yet
Lupus is very complicated and it affects everyone differently. It is very hard to understand. People that do not live with it it know someone with it just do not realize how it can affect people. They do not understand how debilitating the fatigue can be. That's why it helps to have a group that does understand. As you move through this you will find you have questions and we will be here for you.
Yes I know or at least I’m learning. I feel so terrible for my husband. He is doing everything he can and trying to be optimistic with maybe it’s just that u aren’t working anymore or need more iron . I know that’s his way of staying positive. And while I know I could get a different diagnosis BUT I have SO many of the ‘criteria’ for the diagnosis aside from blood Work with the long family history I have already accepted this. I don’t think he has even accepted it as a possibility.
Hi Chasity. Welcome! I was just diagnosed last year and from my experience every day is totally different. I feel OK most days but then other days I wake up and I hurt from head to toe. I know the pain about losing hair. I have been trying to grow my hair out because I haven't had long hair since I was a kid but it keeps falling out it's almost impossible. In September I lost the majority of the hair on one side of my head and in the last few weeks I've been losing hair in the back of my head. I ended up going and getting a cute bob with stacked layers to fake the fullness in the back. I started taking Keratin vitamins for hair skin and nails. It's working great for my skin and nails but the hair well not so well.
Also my "cute" butterfly rash may be a little brighter than yours but it's not that bad on most days, but like you said the texture of the skin is definitely different than the rest of my face.
Have you tried taking any supplements? I have found taking vitamins helps a lot. Mostly ones for inflammation, folic acid, b vitamins, and magnesium. Taking SAMe is great for depression symptoms as well. And L-Lysine works for mouth/skin lesions.
Hi kendra! That’s the same hair cut I got and go figure my flat iron died on me and then my daughters flat iron died too lol just my luck 
I have biotin I am about to start b12 I take daily and that’s about it I take ibprophen and naproxon for pain as needed which to be honest lately has been more than I am comfortable with for the risks but the pain is too much. I am borderline personality/bipolar ( I’ve gotten different diagnosis from different drs) I have to be careful for the risk of sending myself into a manic/depressive mood. I can’t take any antidepressants alone they have to be teamed with abilify which ins won’t cover and its so expensive.
Today I noticed after I was out side my rash got really bright and I started seeing some raised areas under my eyes close to my nose I have never seen that before it lightened up this evening but I’m trying to embrace my disease ( be lupus or not) and whatever new look it brings with it. But it is hard I’m finding myself avoiding mirrors and people I know my husband pictures and all.
Kendra Moldovan said:
Hi Chasity. Welcome! I was just diagnosed last year and from my experience every day is totally different. I feel OK most days but then other days I wake up and I hurt from head to toe. I know the pain about losing hair. I have been trying to grow my hair out because I haven’t had long hair since I was a kid but it keeps falling out it’s almost impossible. In September I lost the majority of the hair on one side of my head and in the last few weeks I’ve been losing hair in the back of my head. I ended up going and getting a cute bob with stacked layers to fake the fullness in the back. I started taking Keratin vitamins for hair skin and nails. It’s working great for my skin and nails but the hair well not so well.
Also my “cute” butterfly rash may be a little brighter than yours but it’s not that bad on most days, but like you said the texture of the skin is definitely different than the rest of my face.
Have you tried taking any supplements? I have found taking vitamins helps a lot. Mostly ones for inflammation, folic acid, b vitamins, and magnesium. Taking SAMe is great for depression symptoms as well. And L-Lysine works for mouth/skin lesions.
Oh and kendra - how long was your diagnosis process I have read horror stories about it and was your blood tests positive?
Being out in the sun makes my rash A LOT more noticeable. I took pictures of how bright red my face was and showed my doctor and his mouth dropped. His response was that's a typical Lupus malar rash. I cried and went through my denial stage but I have learned that embracing the fact that I have this disorder has helped me.
Abilify is VERY expensive. My oldest has PPD-NOS (Atypical Autism) and when my husband was in the Army Tricare covered it but medicaid does not so he's taking Seroquel which is not quite as good but at least it's covered. I'm surprised they haven't tried you on Seroquel since most insurances cover it. It's an atypical anitspychotic that works similar to Abilify and is used for bipolar patients. My son has Mood Disorder NOS along with his Autism. Lupus does have neurological symptoms. I have terrible fluctuations with my moods that it almost cost me my marriage. Being on birth control made it 100 times worse.
I was in nursing school when I received my diagnosis, which was the perfect time with all the stress I was going through. I think learning my limits has been the hardest thing. I use to be a morning person that got up and got ready for the day (shower, hair, make up, etc) and then did what needed to be done whether it was cleaning, grocery shopping, or whatever. Now, I don't even want to get out of bed most days and I can't clean my house without stopping an hour in for a break because I'm exhausted. Going on vacation next week will be a challenge I'm sure. Hopefully excitement of being somewhere new will keep me going so we can do all the site seeing we want to.
That's too funny we have the same hair cut but it works to hide how thin my hair really is right now! I have heard of biotin but I haven't tried it. Maybe I'll pick some up and try it. I haven't straightened my hair since I got it cut because of working, but try blow drying it with a round brush to curl it under, I bet that'll make it look almost like it's straightened unless you have extremely wavy hair like mine. It may as well just curl and be done with it because it looks ridiculous if I don't do something with it.
chasity said:
Hi kendra! That's the same hair cut I got and go figure my flat iron died on me and then my daughters flat iron died too lol just my luck :/
I have biotin I am about to start b12 I take daily and that's about it I take ibprophen and naproxon for pain as needed which to be honest lately has been more than I am comfortable with for the risks but the pain is too much. I am borderline personality/bipolar ( I've gotten different diagnosis from different drs) I have to be careful for the risk of sending myself into a manic/depressive mood. I can't take any antidepressants alone they have to be teamed with abilify which ins won't cover and its so expensive.
Today I noticed after I was out side my rash got really bright and I started seeing some raised areas under my eyes close to my nose I have never seen that before it lightened up this evening but I'm trying to embrace my disease ( be lupus or not) and whatever new look it brings with it. But it is hard I'm finding myself avoiding mirrors and people I know my husband pictures and all.
Kendra Moldovan said:Hi Chasity. Welcome! I was just diagnosed last year and from my experience every day is totally different. I feel OK most days but then other days I wake up and I hurt from head to toe. I know the pain about losing hair. I have been trying to grow my hair out because I haven't had long hair since I was a kid but it keeps falling out it's almost impossible. In September I lost the majority of the hair on one side of my head and in the last few weeks I've been losing hair in the back of my head. I ended up going and getting a cute bob with stacked layers to fake the fullness in the back. I started taking Keratin vitamins for hair skin and nails. It's working great for my skin and nails but the hair well not so well.
Also my "cute" butterfly rash may be a little brighter than yours but it's not that bad on most days, but like you said the texture of the skin is definitely different than the rest of my face.
Have you tried taking any supplements? I have found taking vitamins helps a lot. Mostly ones for inflammation, folic acid, b vitamins, and magnesium. Taking SAMe is great for depression symptoms as well. And L-Lysine works for mouth/skin lesions.
My first lupus symptom started when I was 9! I have had various lupus symptoms my entire life. When I finally went to the doctor with the theory of SLE, it took about a month for a diagnosis. My ANA was negative, but I had another blood test that was positive. It was another anti-body serum test I just can't think of what it was called.
My doctor used that and the fact that there was evidence of lupus in my gallbladder when it was removed February of 2014. A lot of doctors don't want to diagnosis Lupus without bloodwork evidence that suggests lupus, but if you have 4 or more symptoms out of the 11 they will diagnosis it because of strong evidence that correlates to SLE.
chasity said:
Oh and kendra - how long was your diagnosis process I have read horror stories about it and was your blood tests positive?
I’m surprised they didn’t try seraquil too I’ve used prozac depacote risperdal Zoloft abilify celexa and probably a few others but the only thing that came close to working was depacote plus abilify and celexa and ability. Currently I am unmediated because I can’t afford abilify and celexa alone made me suicidal.
I used to have great hair thick curly bouncy hair but now its dry broken thin and looks like I stuck my finger in a light socket lol.
But if I had married a lesser man i would be divorced. I don’t know how he can deal with me and still love me my anxiety and nervousness has gotten so out of hand I cant function. I try to work or be social but I can’t focus on anyone or anything around me I get too scared when it seems like I’m in the middle of 1000 conversations. That is very recent last 2 yrs.
I think I am a lifelong member if not I’ve just been hanging out on the sidelines… I had Scarlett fever twice hand foot mouth twice and even though in the same family 5th disease before the age of 7. Born with asthma / bronchitis. I was always sick or complaining of something according to my mom. I had whole allergy panel come back positive even though I only have allergies to cats. I’ve welted up from head to toe in hives for no reason and treated with benadryl and steroid shots. I never could do birth control of any kind and have had 4 miscarriages 2 ectopic pregnancies lost my left fallopian tube Dr said it was the worst he’d ever seen and I have had several gallstone attacks which ultrasound showed enlarged liver and bile duct but no further test was done.
Kendra Moldovan said:
My first lupus symptom started when I was 9! I have had various lupus symptoms my entire life. When I finally went to the doctor with the theory of SLE, it took about a month for a diagnosis. My ANA was negative, but I had another blood test that was positive. It was another anti-body serum test I just can’t think of what it was called.
My doctor used that and the fact that there was evidence of lupus in my gallbladder when it was removed February of 2014. A lot of doctors don’t want to diagnosis Lupus without bloodwork evidence that suggests lupus, but if you have 4 or more symptoms out of the 11 they will diagnosis it because of strong evidence that correlates to SLE.
chasity said:Oh and kendra - how long was your diagnosis process I have read horror stories about it and was your blood tests positive?
I have had several miscarriages as well. Birth control has NEVER agreed with me at all. I've been on all kinds of them and my mood swings are 1000 times worse. My platelets have been low since I was 9 and they have been low ever since with only normal numbers a few times. I had hand foot and mouth disease when I was 17. I was the oldest patient treated by my doctor and since then, she has never treated anyone over age 5 for the disease. I had strep throat about 7 times a year from 9 through 15 and then ear infections like crazy from 16 through 18. Since adulthood I just hurt all the time. My hands and feet are the worst. Especially early in the morning.
chasity said:
I think I am a lifelong member if not I've just been hanging out on the sidelines... I had Scarlett fever twice hand foot mouth twice and even though in the same family 5th disease before the age of 7. Born with asthma / bronchitis. I was always sick or complaining of something according to my mom. I had whole allergy panel come back positive even though I only have allergies to cats. I've welted up from head to toe in hives for no reason and treated with benadryl and steroid shots. I never could do birth control of any kind and have had 4 miscarriages 2 ectopic pregnancies lost my left fallopian tube Dr said it was the worst he'd ever seen and I have had several gallstone attacks which ultrasound showed enlarged liver and bile duct but no further test was done.
Kendra Moldovan said:My first lupus symptom started when I was 9! I have had various lupus symptoms my entire life. When I finally went to the doctor with the theory of SLE, it took about a month for a diagnosis. My ANA was negative, but I had another blood test that was positive. It was another anti-body serum test I just can't think of what it was called.
My doctor used that and the fact that there was evidence of lupus in my gallbladder when it was removed February of 2014. A lot of doctors don't want to diagnosis Lupus without bloodwork evidence that suggests lupus, but if you have 4 or more symptoms out of the 11 they will diagnosis it because of strong evidence that correlates to SLE.
chasity said:Oh and kendra - how long was your diagnosis process I have read horror stories about it and was your blood tests positive?