[skywatcher07]

I just found out last week that I have SLE and my kidney's were at a stage 3 level. I'm home from the hospital and have had to quit my job and don't know what the future will hold. I have a wife and a 10 & 8 year old. I knew nothing about Lupus. My wife is studing night and day. She has been an angel thru all of this for me! They've got me on sooo many meds and my life has totally been turned around. I quess it's very rare for a man to get it, so that's why it's good to come to this site. We believe it is attacking my nervous system too. The doctors are dealing with my kidneys first. I'm a little scared but I know that God doesn't give you more than you can handle and I just want to use this illness to glorifiy Him. I have one question? I have a wet sensation on my back, thighs and arms 24/7, has anyone else expereince this? It's like a roller coaster I'm on.
It's a new road for me!!!

 

[pollianna]

Hi Skywatcher, sorry that you are going through this. I am sure you will find some answers here to the questions that you have from the more educated members than I

 

[onetay]

skywatcher,
I want to say that I am sorry for all that you and your family is going through right now. Your wife can also come on here and get some answers and advise and support also just thought I would let you know that. You are right sle does turn your life upside down. I am not sure where you are in the world but if it is united states filing for disability no matter where you are needs to be done. Your wife and doctors can help with that for you.
We have a saying here one day at a time and when that day is done we wait for the next to begin. You still have your family and that is a wonderful thing. Remember that this is a new road and it takes time to learn it and to deal with it give yourself and others the time they need to learn what to do.
We have a chat room that you can both us to get instant feedback to your questions I do hope you will use it and find it most helpful to both of you. I hope you start feeling better soon. If either of you need anything we are here all hours of the night and day for anyone that need us.

 

[Pink Pearl]

Hi Skywatcher,
Welcome aboard, and you are not alone. I am very sorry you are having so many problems. Did your employer not have long term disability benefits? If they did, you need to request a form to apply. If they have short term disability, they should have offered this to you.
If no benefits, and you are in the US, then apply to Social Security now for disability. Yes, there is a waiting period, but by the time you get up for a review, you will most likely have passed that period. When you fill out your form, be as verbose as possible. The more data you can give, the better off you will be. A good way to make sure you don't forget anything important is to start to keep a journal now. Keep track of all your medical appts. I put mine on a calendar and keep them for the 7 years. That way, when I get a review, I can look back and know what I had gone thru. Data is important and the more they get bombarded, the better for you.
If you are not in the US, down at the bottom of the main page is a listing on applying in the UK.

As mentioned previously, your wife is welcome to come here as well.
Many of us have odd hours and so you will most likely find one or more of us at just about any time.
Sally

 

[orangelily]

Hi Skywatcher,

Welcome to the best internet site. The people here are absolutely great, never judge and offer great assistance and boost your moral.

Hope your wife comes onto the site as well and welcome to her.

Take care hugs & kisses

 

[KarolH]

Hi Sky,

Again, welcome to a great place on the net where others with Lupus can understand what your going through and provide support to you, and your wife too.

I am curious too about disability. Are you in UK or USA and have you applied for any kind of disability benefits? It is scary when you have a family to support and illness comes out of no where and smackes us in the face.

If you do not mind me asking, were you having any symptoms before you landed in the hospital with stage 3 kidneys? I am just sorry that you and your family have to go through this.

As for the wet feeling on your thighs and back, I do not get it there but I do have that wet/burning kind of feeling on my right arm from the elbow down.

It is there all the time and annoying too.

I do hope to get to know you better and let us know how you get along. I am happy that your wife has been your angel. We all need one of those.:wink2:

 

[Merle]

Hi Skywalker

So sorry; - you and your family must be feeling shell shocked. For many of us here, the road to diagnosis is somewhat more drawn out so that one ends up intuiting its outcome over many months or years.

As to your query - During the past 2 - 3 years, I have had periods in which I've had the feeling of cold water running down my left leg. I'm told that this sensation is due to nerve damage/inflammation, although the location of the nerves affected is not entirely clear, ie whether they are peripheral or in the CNS - since I have multiple brain lesions [that originally gave rise to a diagnosis of MS in February 2008 followed by one of lupus in the December].

I understand from my ophthalmologist that neurological symptoms are much more common in lupus than one would suppose from reading the literature.

While on the subject of the information provided by lupus literature - please advise your wife that she should only rely on the most recent sources. The older literature has a very negative take on the disease and can be unnecessarily alarming. With recent medical advances, life expectancy in lupus is generally normal.

Take care

Merle

 

[Douglas]

Howdy Skywatcher,
We men with SLE whould start a "10% Club" as that is the most commonly reported ratio of male to female Lupus sufferers. I went undiagnosed for three *decades* from my first obvious Lupus symptoms before anyone thought to test for ANA. Medical mystery to textbook case in one blood test. It sounds as though your wife like mine will be the best support you have. It is *very* hard on one's spouse to be married to an SLE husband.
You will certainly find interesting times ahead!
All blessings,
Douglas+

 

[ROSJAC]

Hi Skywatcher and welcome, I am very sorry you are going thru such a rough time.It is bad enough to be Dx. with SLE but to have 2 young children to care for is cause for more concern. Sounds like you have a very loving and supportive wife. Also, from your post I believe you have a personal relationship with someone that will always be there to walk this journey with you.
Sending you Good Wishes, Rosie

 

[keebler]

Hi Skywatcher,
Welcome to the forum, You have found the right place for updated information on lupus. With caring members who will share their experiences dealing with lupus.

It is great that your wife is so supportive, she is welcome to come and join us here too.

I have a brother with SLE, I am female. We both know where we are coming from when we talk and understand what the other one is saying.

Take care,
Lyn