View Full Version : New member in California
03-25-2008, 01:45 PM
My name is Gen and I came across this site looking for support. I am a 33 y/o, married and living in San Diego. 3 weeks ago I saw Dr. Wallace for a second opinion and wouldn't you know.... He diagnosed me as having Lupus, Sjogren's and Raynaud's. YIKES. The rheumy's before always kind of said Maybe it's UCTD or MCTD or ????
Anyways I have been very depressed lately :( feeling sorry for myself.
I think the hardest part for me is not being able to do the things I love.
I have 3 horses and have had to put two on consignment as I can no longer ride like I used to, nor be in the sun as I am extremely photosensitive (DLE & SCLE lesions + flu like symptoms)
I used to do pilates and yoga 4 times a week but lately I am lucky if I can drag myself to 1 class. I also find myself becoming anti-social and not wanting to interact with people.
My hubby is in La La Land about the whole thing and his answer is for me to go to the gym (if it were so easy).
I am at a miserable point right now and would love to talk to people that have been through this and can offer insight.
Thank you !
03-25-2008, 02:07 PM
And welcome...this is a friendly little site. I'm sure the others will be along shorty to welcome you.
I'm a 48 yr old woman, I live in Nova Scotia Canada and I'm in the process of being tested for lupus...which for me is a night mare. I'm seeing my family doctor next week to find out how her conversation with my rhuemy went...seems the specialist does not believe in lupus and refuses to test me or answer my questions.
I'll be asking my doctor to refer me to someone else. My mother had lupus and my sister has it. She is currently in remission for the lupus..so yah for her.
Every one is different...so dont write yourself off. There are many of the things you loved to do that you may be able to do again once you are sorted out with medications....there is always hope so don't give up...you are allowed brief pitty parties...we'll even bring cake :) by all means lean on us...ask us questions. Read all the posts you can find.
There is a tone of information to be had here and some very wise kind and gentle souls. Glad you found the site :)
Editing to say don't give up your pilates and yoga .... you man need to tone it down abit or rethink which positions and routines you do...but it's very important to keep moving. You have to respect you body when it's in a flare but you must keep moving. Speak to you specialist about this and to your yoga instructor.
03-25-2008, 03:22 PM
First of all, welcome to our family here where we want you to know that we do understand and you are not alone!
I know how depressing and frightening it can be when you are newly diagnosed with this disease. Especially when your doctors spend more time telling you what you cannot do than telling you what you can do. As Sits-in-the-corner noted, you may not have to give up those things that you love. You may have to modify how you enjoy them, but you can still enjoy them. There are many ways to protect yourself from the sun so that you can still spend time riding your horses. On these forums, our members have shared suggestions, information, products etc. to help one another in the area of sun activities and protection.
Exercising is very important, so continuing to do this will be of great benefit to you. You may have to decrease the number of days and the number of hours each day that you exercise, but you can still do it and you should still do it. It is hard for us to make it to the gym because of our debilitating fatigue and our aches and pains. Pilates is one of the best exercise programs for us because it involves all parts of the body and is non-jarring. So, try to stick with it as much as you can.
Do you have access to a pool? Water aerobics and/or swimming are also highly effective exercises for us (and the cool water feels wonderful for those of us who also suffer from Fibromyalgia).
The loneliness and feelings of misery are not at all uncommon, especially when those around you do not understand your disease. We are here so that you do not feel lonely and to help you when you are feeling miserable due to the extreme changes in your life. But, remember this: You life has only changed...it has not ended. This is not the end of what you once did, it is only a change in how you do those things. I have lived with Lupus and Raynaud's since 1985 (my diagnosis date, but I know I had Lupus years before that) and with Fibromyalgia since 1992, and I have maintained a relatively normal, active life. It is possible for you to do the same. Start now to make the necessary lifestyle changes, take your medications, keep your doctor's appointments and, most importantly, learn as much as you can about your Lupus, your Sjogren's and your Raynaud's. Knowledge will help to eliminate the fear that now makes you lonely and depressed, it will help to give you the power to take control of your health AND your health care and it will arm you with information so that you can teach your loved ones!
We are here to help you in all of those areas! Come to us at anytime and for any reason...You Are Not Alone!
Peace and Blessings
03-25-2008, 03:40 PM
I am Oluwa...46...welcoming you with open arms. Miserable mentally, you can find an antidote here. I just received a dose of understanding, care, love..and all that good jazz. I was broken.
I like, love what Saysusie said to you...Your life has only changed...it has not ended.
Read all posts, contribute, ask, seek..we all learn from one another, even from the newest family members, like you...
sick n tired
03-25-2008, 04:55 PM
Welcome to this forum. It is nice to come and talk to people who are not in la la land....Funny...my hubby likes to visit that place, too. I, also, have been told to work out more and I will feel better :) .
I understand the depression. I was diagnosed last October after 11 years of being told it was all in my head. I am now trying to find out a new normal for me and my family.
I will enjoy getting to know you as you find the new normal for you.
03-27-2008, 08:19 PM
Gen, hi my name is Christina and I live in Ca. Bakersfield to be exact. My husband has family in SD he grew up there. I know what you mean about the depression i've been there alot during these last few months within being diagnosed and I thought it was just me but i've found myself being anti-social too. For me I think it's because even if i wanted to get out there's days I just can't because of the headaches, the sun which makes it so much worse, aches and pains ect., ect.. I'm trying to beat it though and stay positive some days are better than others. Try to stay positive and I hope you start feeling better soon.
03-31-2008, 05:59 PM
I too am an ex SoCalGal (many moons ago) and a horse lover...I can truly relate to the thought of not riding anymore. It has been over three years since I've ridden...just haven't had the physical strength required to stay on a five-gaited American Saddlebred. ON THE OTHER HAND....I'm not about to let this thing keep me from the horses forever. I go play with them. I found that raising the babies can be fun and not quite so physically taxing. Do I miss riding? Yes. Do I plan to get back on? Every day.
Never give up. Come here for support and encouragement. Never let the flares get the best of you. Rest, take care of yourself, and prepare for battle. The ponies await.....
I wish you well...and happy trails. :)
03-31-2008, 09:51 PM
Welcome to our forum from another Californian (central/Bako). You will find many caring, understanding, and loving fellow lupies on this forum. We have all been where you are; but you are not alone. Dr. Wallace is on the leading edge of Lupus. There is an upcoming yearly eduational seminar at Cedar's Sinai in May that is very informative. You will also be able to meet many others in your same shoes. Dr. Wallace believes in educating patients and families so they will better understand what is taking place with their bodies. Invite your husband, rsvp and learn something new, enjoy a great lunch and talk with others. Take your meds, pace yourself, keep your 3 month appointments.
It is completely normal to think of all the things you can't do; but concentrate on all the things you can do. We were blessed enough to previously be able to do the things we did earlier in life versus not at all. I was recently talking with a fellow friend and she stated she has never been down on the beach nor probably ever will be. :( I am blessed that I rode equestrian and jumped fences 20 years ago; I can't do that now. I can close my eyes and feel the wind through my hair, the adrenaline rush, one with the horse and soaring over the fence. No one can take that away. No one, I am blessed!!
Working out at the gym brought only pain. I was a gym rat, ran 5 miles per day and swam everyday in the Summer. Attempted to run .25 miles after diagnosis and quit. I don't believe in creating more pain; we already have enough as it is. Are there any other hobbies you enjoy? Photography, crafts, etc.? Take one day at a time; don't think too far ahead.
We are all here, and great listeners.