View Full Version : Hello - New Here Lupus for 4 years (almost)

02-27-2009, 06:05 PM
Hi everyone.

I am new here to your board and wanted to introduce myself. I am a married mom to 2 boys (ages 3.5 and 2).

My lupus symptoms started toward the end of my first pregnancy, and it was very hard for any of my doctors to diagnose right away. I am sure a lot of you have a similar story of how long it took to get answers.

My Dad died suddenly when I was 6 months pregnant with the first child, and I think the stress and shock is what triggered lupus for me. I went into early labor and ended up on bed rest for 7 weeks - had a c-section, and tried to start my new life as a mommy.

I suffered strange symptoms that a lot of the time the doctor said were just hormones and my body getting back to normal, etc. Over the course of the next 3.5 years I have seen too many doctors to list, had too many tests to count and have been diagnosed with everything under the sun! Celiac Disease, Hashimotos Thyroiditis, Lyme Disease, Multiple Sclerosis, Bechet's Disease, Sticky Blood Syndrome, Lupus, etc. and the list goes on forever!!!

I am finally coming to terms with my Lupus. I have been in a searching mode too long now - not able to accept the Lupus diagnosis and finding doctors to look for other things to treat me for... I am done looking for new doctors and getting new tests! My doctor now is very smart. He was an engineer and now is a doctor. He looked over my last 3 years of medical records and the only thing he sees is Lupus (And a bunch of doctors looking for rare diseases and taking advantage of my excellent medical insurance payments!).

So, I am once again starting Plaquenil and beginning the process of waiting to see if it will work. Every time I have ever started it, I have given up too soon.

I am interested in joining this group to learn about coping strategies, and learn about the medications that your doctors treat you with. Hopefully I will get there one day and feel that I can get my life under control with Lupus.

Today, I started a short course of prednisone again. I have had many many signs of a flare coming on, and finally caved today. My hubby is away for a week and I am alone with the kids. I am hoping the pred. helps me in the short term. I know it's not the forever answer!

Anyway - sorry this "intro" got so long!!! God bless anyone who is still reading!

sick n tired
02-27-2009, 09:18 PM
Hey JenniferLynn,

Welcome to this forum! That was not a long post..you should have seen mine it was a book. :-) I am going through the process of seeing what also if any disease I have in addition to lupus. I am tired of all of the "ologists" that I am now making acquaintance. I really like my Rheumy, but I hate having to go to every doctor who is a specialist.
It is great that you have a good Rheumy, though. It seems to be the luck of the draw on if you get a good, and understanding one or a jerk...many here drew the jerk. My first one was rude and had a God complex.
Plaquenil is great when it finally kicks in but it can take up to 6 months to kick in.
You have children, how many do you have and what are their ages. I hope that you being alone this week won't be too taxing on you.
Well that is enough of my book... :-)
Nice to meet you...Have a great day...

02-28-2009, 07:05 AM
Hi thanks for the warm welcome.
Actually, I got a terrible rheumie. I finally left her after 3 years and I am just sticking with my new primary care doc (the engineer guy). She never admitted that I had lupus all those years and just kept saying that I needed more sleep! I am still dealing with the anger of trusting her for all that time, I feel like I wasted years of my life!

Anyway, I have two little boys. Christopher is 3 and James is going to be 2 in a few weeks. They are good little guys and I love them so much. It's hard being the only adult in the house this week though! And of course, I am pushing myself - cleaned the floors this morning and cleaned up the kitchen counters, etc.

Looking forward to a nice quiet weekend hopefully!

Boy, that prednisone really made my hips hurt last night. Like a deep bone pain. I know that my Vit D levels are low - so I popped 1200IU this morning and yesterday to keep up with my Vit D while I am on the prednisone! Maybe that will help a little.

Have a nice day!

sick n tired
02-28-2009, 09:33 AM
Prednisone makes my hips hurt, too...it is a deep sick pain. I hate that kind, I keep trying to change positions to no avail but I actually liked the short prednisone stuff. It sure gave me energy. Right now I am on a very high dose and it is not fun.
Now that it is the weekend, has your husband returned? I hope so and that you can get some rest. Your boys sound sweet.
Hey are any one of your son's left handers or ambidextrous? I am a lefty and have 2 of my 3 sons are ambidextrous. Weird question, I know I am just curious. :-)
Well, Have a great weekend.

02-28-2009, 02:35 PM
Hi again! Funny you should ask about the kids. Christopher my 3 year old is definitely left handed! Not sure about James yet, I think he is a righty, but we will see as time goes on :)

I took my last hydrocodone this morning and it really helped with the deep hip pains. But, of course I only take them as a last resort. I am afraid of getting hooked on them as I know someone who is! Anyway, it got me through the morning and I even hung the new curtains in the living room.

Hubby is going to be gone until Thursday. He took a vacation with his buddies to Daytona Bike week to ride their motorcycles. Something I used to be able to do with them, but I tend to be in too much pain these days! Hopefully they are having fun though!

sick n tired
02-28-2009, 03:46 PM
I just recently read that many lupus patients are left handers or ambidexterous. Also, lupus patients have at least 50% of their son's are lefty's....isn't that interesting. I myself am a left handed person and of my 3 sons 2 are ambidextrous. I was just curious...I read about that bit of trivia in a book by Dr Robert Lahita called: Women and Autoimmune Disease.
I only take hydracodone if I am super in pain for the same reason. I don't want to get hooked. Sounds like fun for your hubby...too bad you couldn't go this year, perhaps next year...something to shoot for anyway. :-)

Angel Oliver
03-01-2009, 09:24 AM
Just to say hello and welcome and im sending you gentle hugs.

Angel xxx

03-01-2009, 09:25 AM
[quote=sick n tired;42045] It seems to be the luck of the draw on if you get a good, and understanding one or a jerk...many here drew the jerk. My first one was rude and had a God complex.

I've drawn a jerk a couple of times. I not only report his/her rude and unprofessional behavior to the hospitals in which they worked but also the medical board and local medical reviews people look at when they're searching for a doctor.

In other words, I fired the jerks and hired professionals. I'm not going to spend all of this cash and risk my health so some jerk can treat me like crap.

03-01-2009, 12:40 PM
hi jenniferlynn,

welcome to the site.....as you can already tell, there are a lot of people here to help you. I hope you can get some relief from your hip pain. This seems to be one area of the body that all of us suffer with.

your boys sound precious, and i know they are your sunshine.

03-01-2009, 06:59 PM
HI and welcome!!!!!!! i have lupus, too. yippeeeeeee! ok, i know not really, but i find humor helps me cope!
i only have one daughter, who is 7, and is definitely the sunshine that keeps me going. she also has been diagnosed with sle. it is so super hard at times, but i'm finding that i can really offer her support in a wonderful bittersweet way because i know exactly what she's going through. your boys sound so adorable, and must keep you very busy. (and hey - i'm a lefty, too!!!!!)
i wanted to suggest a weekly pill organizer to help you remember your meds. it has helped me sooooo much! it's the only way i can keep all of our medications straight. i picked our's up at the local pharmacy. there are many styles - find one that works for you. i use my daughter as motivation when i don't feel like taking me meds. i know how horrible i feel when i flare, or when i don't take them. i've got to be on top of things in order to take care of her, which means i've got to take care of me first!
sending you hugs and warmest wishes!

03-01-2009, 07:34 PM
Thanks sunshine. That is good advice. I have a pill organizer and really should use it! I am going to call my primary tomorrow (who I like better than the rhuemie) and get an appointment.