View Full Version : Hello.

09-20-2008, 05:46 PM
I'm going to apologize in advance because this is going to be very long.

In 1998 I became pregnant after 7 years of trying. In my 2nd month my lung collapsed spontaniously for no real reason they could find. From 1998 to 2004 was a real struggle with joint pain, pain in my chest when taking deep breaths, feet and hands so very cold all the time. I turn purpleish and blotchy when I am cold and the colder I am the more it hurts.

2004 My hair fell out in patches all over my head! Doctors and dermatologists ran all sorts of tests and treatments. By this time the tips of my fingers and toes were completely without feeling anymore :( Then my daughters pediatrician decided to run a few blood tests. The results were very high positive ANA's in all 4 patterns. This concerned her greatly and 30 days later the tests were ran again with the same results. She diagnosed me with Lupus SLE and sent me to a rheum right away. He blew me off and told me not to waste his time. He was a real jerk and I never saw him again.

For the last four years I have had yet another spontanius lung collapse, hair loss, rapid weight loss, and unexplained fevers. My joint swell and hurt so bad and every morning they are so swollen. I have also miscarried more than a dozen times. In 2007 I went to Pittsburgh and the rhuem there confirmed Lupus and also diagnosed Raynauds Syndrom with severe damage to my fingers and toes. She also suspected I might have Crest Syndrom or Scleroderma, or MCTD. Unfortunately we have very little money and can not afford another trip to Pittsburgh with the gas. It is a 5 to 6 hour drive for us.

With my recent joint problems my family doctor was able to find a rheum only 1 hour away and I will meet him on Oct 4th. She also just diagnosed me with IBS. I have a 4 inch section of bowel seen on a cat scan that is irritated and I have trouble eating without it going right through me or not going anywhere for days. Stomach pains are a norm like all the rest for me now. I hate the idea of yet one more doctor to drag records to after seeing so many and not getting any answers or relief. I have been battling depression and have felt so alone. I lost my job at WalMart 2 months ago because of the pain and swelling. It seems to me the more I push myself to LIVE and DO the worse I get health wise. My husband is kind and compassionate and fond of bear hugs. He cries now because he cant hold me close and tight because of pain.

I was so alone and then started searching for people like me on the net. I found this place and so so hope someone here knows what I am feeling and understands. I just need to talk! No one here has this they dont understand. They look at me on the outside and think I am ok, when I am not. I just want to stand in the sun again and dance in the rain. Dancing hurts and rain makes me to cold. The sun puts a red rash on my face that isnt painful but looks awful.

09-20-2008, 07:16 PM
I am sorry that you are going through this. You have come to the right place for support and understanding I am glad that your husband atleast can understand what you are going through and tries to help. It's great to have someone who is supportive in your life because you are going to need. I hate that you had to go through all those miscarriages, I've only had one and can't imagine what its like to do it again. I know you want to push yourself to be able to do the things you love and are used to, but I have recently learned that you have to listen to your body whenever possible. If that means sitting or going to slepp try to do it as soon as you feel the desire. I feel like I am going crazy if I don't but when I do I feel about as good as I can in this situation. I also feel like if O hadn't found this website I'd be crazy or atleast still very confused about what it means to have lupus. The people here are so great . You can ask them anything, or just tell them how you are feeling or how your day went. I am getting more used to it and it helps to have people listen to you that understand what you are going through, because, as you have discovered, not many people understand. As for the doctors I hope you find a good one soon. Alot of them can be jerks and I have noticed that lots of people here have been through a few before finding one they liked. Anyway this is getting too long. Good luck to you. I hope yur appointment goes well and that you start getting the treatment you need.

09-21-2008, 11:12 AM
Soft hugs deester and welcome :)

You have been through the mill and the wheels are still in motion. Vent away and right novel...we will read.

Best of luck with your doctor's appointment on the 4th. I hope they are not a stink face.

I have a stink face doctor. She does not believe in lupus and when she makes a mistake she finds a way to blame me for it :P

My family doctor on the other hand is very thoughtful but a bit hard to get her moving. I need a pokey stick.

I hear ya on the pain :( plus we are coming to my least favorit season...six months of fricking winter....I could just cry.

Brace your self I'm going to do the polar fleece song and dance...

If you do not have a set of polar fleece bed sheets...do yourself a HUGE favor and get a set.

Getting in to bed and NOT being jarred by ice cold sheets is such a treat.

Even flannel sheets do NOT compare to the warmth and comfort of these little beauties. I'm sure things must be tight with having "UNFAIRLY" lost your job.

But if you can find away to get them, please do. They are worth it.

Having said that...grrrrr @ Wal Mart for not being a supportive employer.

I have IBS as well. Mine is controled through diet. I'm not on any medictaion. Except if I'm having a particularly bad day...I'll take Immodium. Works wonders for me, but as I said I'm not on another medication for IBS and do not know how it would interact.

Welcome to the board, there are lots of warm and wonderful people here. Everyone has something special they bring to the site. I'm sure the others will be along soon to welcome you. :)

09-21-2008, 01:26 PM
Hi Deester,

I just wanted to say hello, and welcome you to the site. You need not worry about going "too long"with your post. This is a place to unload, vent, and get some support from others like you, go as long as you want. My name is Rob, and I was diagnosed with SLE in 2004, and MS in 2008. I've experienced many of the symptoms you describe. My hair temporarily fell out in patches. I have joint pain, and a terrible case of costochondritis that makes breathing really painful some days.

I used to own my own business, and I had to quit, and sell the business. I'm on full disability now. The feeling of being alone, and having no one around you who can understand what you are going through is almost a universal problem with people who have SLE. We look fine on the outside, while we feel terrible on the inside.

Before I found this place, I had only ever spoken with one other person with SLE. I isolated myself big time, and pretty much withdrew from the world around me. Depression was awful. Making friends here, and talking to others who really do know how I feel has done wonders for me. I think you will like it here. There are some really great people here, and a ton of knowledge as well. I'm glad you found us. And once again, welcome!