View Full Version : Lovin this site!!!

07-13-2009, 07:55 AM
I first want to say thanks to everyone that responded to my first thread! The support here is amazing! Because of that support I have not only started my daily log of what I eat, how I feel, and where my aches are, I have also requested a copy of my blood work. The doctor or nurse, seems very protective of it for some crazy reason, but I think they have to give it to me don't they?!?!
Anyway, today has been a great day so far. I think the prednisone is certainly helping with that! I actually bounced out of bed today and I have not done that in months! Did not make it to the gym, but one step at a time!
One weird thing that is going on is I can't stop cleaning?!? I almost feel as though I am nesting? Has anyone else had that happend? I am thinking it could be one of the few things I can control right now so I am going overboard. It also could be cause I can't sleep so I have a few extra hours in my day. I usually wish for more time in my day, I guess you better be careful what you wish for!!!

07-13-2009, 08:05 AM
Hi MLockwood,

I'm glad you like it here-we aim to please! I really believe this is one of the most active Lupus websites on the net. There's always someone here, and I rarely ever see any question or comment go without a response for very long. We have a great bunch of people here that make this site as good as it is. As far as your bloodwork stats, it's your info, so tell them to fork over the copy ASAP. If they resist, tell them it's not a request, and remind them of the fact that they, work for you, not the other way around.

As far as the nonstop cleaning, well, I'm a single guy, and I can say that I have never had that happen. In fact, just getting started cleaning rarely happens!:laugh: Anyway, welcome to our group!


07-13-2009, 09:32 AM
MLockwood...Hi there. I am Oluwa...welcome.

OF 1996...HIPAA Privacy Act..

HIPAA...its the little brochure, or a copy you received or signed saying you understood when you went to your first appointment with any doctor...remind them of it and you will receive your copy of your bloodwork.

What Rights Does This Law Give You Over your Health Information
Health Insurers and Providers who are covered entities must comply with your right to:

Ask to see and get a copy of your health records
Have corrections added to your health information
Receive a notice that tells you how your health information may be used and shared
Decide if you want to give your permission before your health information can be used or shared for certain purposes, such as for marketing
Get a report on when and why your health information was shared for certain purposes
If you believe your rights are being denied or your health information isn’t being protected, you can

File a complaint with your provider or health insurer
File a complaint with the U.S. Government

Regarding the cleaning...are you on steroids? It is known to give us energy..zoom, zoom..zoom. Me, while on it I usually peter out after a the first few days of dosing..


07-13-2009, 09:36 AM
My foggy brain was searching for "HIPAA" to add to my advice, but I couldn't think of it. Thanks Oluwa, as always, you rock!

Angel Oliver
07-13-2009, 10:40 AM
Oh im so happy you are here and today are feeling a little easier.I have the same problem with my doctors handing me over my blood results,still not got em,never have.Maybe i'll ask again.
Rob......so funny about you not cleaning :)
Oluwa,interesting read,thanks.x

love Amanda.xxxxxxx

07-13-2009, 12:07 PM
Yes I am on the roids! I am a little nervous about how I am going to feel when they run out! Maybe I will have to go on a post-roid rage to get another bottle! Just kidding. Good news, I did get a copy of my blood work...bad news....I have no idea what I am looking at. ( should have gone into medical school rather than economics) Not really sure what to do with the results except look them up one at a time and see what is 'normal', where I am at, and why I am where I am.

It must be the increased energy level from the roids that is causing me to clean.

I am taking my last Avelox tonight and I still have quite the cough. I am hoping the pneumoina is gone and I just have a lingering cough. I do feel much better, and go in for a follow up with my family doctor in 2 weeks. Maybe I will go in and she will say she made a mistake and I don't have Lupus....or maybe I will win the lottery on Wednesday?!?

07-13-2009, 12:44 PM
Welcome to the site!
I too feel lucky to have found this site and the wonderful people on it like ROB (wink) and Oluwa...who always pulls up sites/information to help with questions you may post!

07-13-2009, 08:15 PM
Oluwa, you are awesome! You always know exactly what piece of advice to give people on here!
MLockwood, I am pretty sure I have seen Oluwa comment on multiple threads about lab results. If you go to her profile and search her threads, you will probably find most of her answers.
Rob, I'm with you. It used to be so easy to clean 15-20 mins a day and keep a pretty spotless house. It was common for my friends to comment on my being a "neat freak". Now I am lucky if the dishes get done before bed and not the next night. :shocked: I keep telling my friends that I am just waiting for the cleaning fairies to volunteer to come by and clean for free ;) but they don't seem to be getting the hint! Now I just clean a little bit and worry about what I can handle that day.

07-13-2009, 09:02 PM
hi mlockwood,

so glad you are feeling so good. Yes, the steroids will make us do "super human" things. Once, when i was on them, me and one man picked up and moved an iron claw-foot bath tub....still amazes me.

about your lab results....if you will post them here, you will be amazed at the knowledge that will be shared with you. There are several members who are very familiar with lab reports.

keep cleaning....hope you are whistling while you work.

07-14-2009, 06:34 AM
Sandy..you are too kind, thank you...

Mlockwood, as Phyllis said, post your test with results and someone will help. Sometimes we can break it down into simpler terms since we've been around the mill a few times. Saysusie is wonderful at it...me, much of the time I copy and glue.

Enjoy this day, I will...getting the bucks cleaned. Canceled my last appointment.

Love to everyone,

Angel Oliver
07-14-2009, 07:25 AM
I think i may win the lotto though this wednesday...or im hoping too :) x

07-14-2009, 07:41 AM
Hi Mlockwood,
Im glad you love the site I do too, and there are so many great people on the site. So many knowledeable people. Welcome!!!!!


07-14-2009, 02:56 PM
Thanks everyone!!! I am feeling good again today so that is bonus! Just really tired, but I can live with that!!

I will get my lab results posted. I am not sure how to even read them, but I will put up what I have and see where we land. :cute:

It has been great getting to know all of you! I wish the circumstances were different, but I truly believe everything happens for a reason. God would not put us through anything we can not handle! It might not make sense at the time, but the reason will eventually present itself!

Here is one reason why...

I work for a company that has retired people drive for us. When I started with them over 10 years ago I met the most amazing man, that was my grandpa away from home. He was the last gentleman on earth, he opened doors, pulled out chairs, helped with coats..all the great stuff you see in an old movie. Over the years I was blessed to get to know his wife, children, brother's, sister's, and grandchildren. Come to find out his favorite grand-daughter has Lupus. Her and I got to know each other pretty well. Unfortunately, he passed away a few years ago and I have since lost touch with his family. I now know why he was brought into my life, why his family was brought into my life. I have a friend that I can reconnect with and I think she was meant to help me with my new diagnosis. Whether you believe in God, Charma, Dejavu (sp), or whatever your belief....things do happen for a reason.

07-14-2009, 04:04 PM
i 100% agree mclockwood....hope you can get in touch with his grand daughter. She might even need a friend and that would further explain why you and her grandfather were brought together.