View Full Version : Hello All!
01-25-2009, 02:00 PM
I am a 43 year old male. Over the last 2 years I have been diagnosed with Lupus, sleep apnea, FM, and myositis. I am currently on MTX 1cc / week, Plaquenil 20mg 3x / day, Folic acid 5mg / day, Androgel 5mg / day, Solumedrol 16mg on and 32mg off / day, and Lortab PRN 4x / day. I also use a CPAP for the apnea.
I am a maintenance manager in a steel mill and got FMLA back in July of 08. I am still not sure how my employer is going to treat me overall cause I just recieved a bad evaluation that was based on when I was off sick while adjusting to my MTX going from oral to IM. My family tries to understand as much as anyone possibly can. It is still hard for them as they do not have to live with this.
I came here cause I want to find people that are unfortunate to be going thru similar problems so I do not feel like I am going crazy. I am not at all sure what to expect with these illnesses as my Rheumy told me that she is in aw that I am still working. I do so cause I need to to keep my family going financially. I also want to be able to contribute any knowledge that I might have for anyone.
Thanks for reading and here is hoping for a pain free day!!
01-25-2009, 02:17 PM
Welcome to the site. There are a lot of good folks that come in here. Rob our moderator has SLE and he has a lot of good information from the male perspective. I have had Lupus and several other Auto-immunes for most of my life and I just turned 50 in December. Rob will see your post and I am sure that he will respond pretty quickly. I hope that you keep posting. There are several men with Lupus that come in here.
01-25-2009, 04:57 PM
Welcome to the site cptnblah
Glad you found us :)
How long have you been on the plaquenil? It can take up to 6 months to kick in.
I was about to give up on it, when it finally started to work for me. It's made a huge difference. Hopefully it will for you as well.
Lupus affects every one differently. But there are alot of common issues.
I'm not diagnosed as yet. I've had mixed ANA test results, and possitive malar rash as well as butterfly rash and a few other goodies.
My sister has been diagnosed with lupus but is currently in remission...Yah!
My mother also had lupus.
01-26-2009, 11:40 AM
welcome to the forum. As you will find, there is an incredible amount of knowledge and compassion within this group.
sorry to hear about your bad luck, I hope you can overcome any misunderstandings/non-personal rules that have occurred within your professional environment. A letter from your dr. might help resolve thes issues, but at the same time, it might result in a position change. this is a sticky area, and is governed by so many variables. I just hope that you can find a resolution, because stress is a huge bad guy when it comes to lupus and associated diseases.
stay true to yourself, don't let anyone make you question your sanity.
as far as family goes, I agree, it appears very difficult for them to understand the full capacity of this disease....after all, we look fine, so why do we do feel fine. My daughters spent some time reading posts on this site, and going with me to drs. appointments. these two things seemed to help them see some of what i go through, but thank goodness, they do not know the full aspect. You have to have this disease to really understand it, and i would not wish that on anyone.
take care, welcome, and use us as a sounding board. we all care about each other.
share a smile today,
01-26-2009, 11:45 AM
Im just here to say welcome and so glad you found us. Im sure someone will be along soon to help you with the knowledge,help and support you need.Sending you hugs.
01-26-2009, 12:16 PM
Hi Cptnblah :lol:
Welcome to our family. I am glad that you are here and you will, most certainly, find people here who understand what you are going through and who can provide you with information and camaraderie.
Like many of us, you suffer with several co-existing illnesses and trying to manage our health and our lives with all of these diseases can be extremely difficult.
I know that the ADA has great information about job accommodation. Perhaps you can contact them to see what type of help you can get so that you will be able to retain your job.
In the meantime, we are here to help you in any way that we can and we want you to know that you are not alone!
Peace and Blessings
01-26-2009, 12:55 PM
Thank you for reading us and sharing a part of you too...warm welcoming hugs.
That is wonderful such love and importance to find a way to continue to work. To provide for those you love, your family. Hugs. Please ensure you too, take care of yourself...rest to replenish, manage stress as I am sure your job is demanding...
Unfortunately, we don't know what will happen to any of us. We all have Lupus, but our symptoms may all be different but I know we understand one another what this disease does to the heart, spirit, to our livelihood from the pain, uncertainties..the changes in our lives it may bring.
It does change us. In small degrees or large. We sometimes, more often than not change unwillingly...but change can lead us to places we would have never thought to journey. Physically and spiritually.
Think of yourself as a machine.... preventive maintenance. Key is to care for ourselves to prevent other symptoms from occurring, breakdown. Through, eats, rest, drugs, exercise. Try not to isolate, be social in some form...interact. And enrich the mind and spirit.
Remission is obtainable. Living a full life is possible, some with little or no restrictions.
Crazy? We have all been there and back a few times, eh? You're not...Sometimes we get lost in our heads, thinking, worrying, fearing...when you find you are on that ride, post, write, talk about it. It helps.
01-26-2009, 02:45 PM
Thanks to everyone (KathyW1958, sits_inthe_corner, mountaindreamer, Angel oliver, Saysusie, and Oluwa) for all your kind words and warm welcome.
In answer to a question that I saw...I have been on Plaquenil for about a year to a year and a half. Don't get me wrong...I do feel much better than I did when I was 1st d/x. Back then I could hardly get out of bed.
I know that everyone here has their own issues to deal with also. It also helps me while I help others so I will be here to help also.
01-26-2009, 02:50 PM
not just for another knotch on the bed post lol
welcome to the forum, i thinnk you will like it here
I'm Rob, I'm 40 and was diagnosed with SLE five years ago. The fact that you are still working is really amazing. I've been on full SSI disability since not long after my diagnosis. I was a smallarms designer, and owned my own business. My cognitive problems made me a safety hazard both in the machine shop as well as at the test fire range, so my early retirement was not a choice. A handful of my employees pooled their resources and purchased the business and are carrying on nicely, but I miss it very much.
Anyway, there aren't many of us out there, so it's always good to talk to other men with Lupus. You may feel like you are going crazy, but you are not. This disease can be hard on a person. It can also be controlled, and many people live a full and fulfilling life with it. Some lucky ones even go into remission. There are a bunch of reasons to have hope. I'm glad you decided to speak up and join our group.
01-26-2009, 03:16 PM
Thanks, iseedeadmonkeys I am sure that it will be a pleasure to be here.
I am sorry rob to hear about your business. My parents are constantly at me about SSI but I am holding out as long as I can. I know that it is only time but as long as my manager is supporting me, I will. My wife calls me a bull and says that I worry about too much financially. I do however make sure that I get as much rest as I can. It is nice to be able to talk to a male about this cause we are so few. I will post more tomorrow.
Take care all and I hope to talk more later...tonight I have a date with MTX!
01-28-2009, 12:06 AM
Just wanted to say welcome.
01-28-2009, 03:06 PM
Just wanted to add another welcome to the bunch. :D
You're a lucky man to have your family that loves you and is there for you.
We'll be there for you, too, and we have plenty of empathy and enough compassion to go around. I've had Lupus for 26 years, diagnosed in my teens.
Sounds like you've definitely been around the block and then some.
Looking forward to your future posts and contributions............
p.s. I love the Captain Blah. That's perfect. And your signature line is great! I read it to my husband and he chuckled. :lol: