Hi Gail,
It toches our live such alot and if my skins not looking to bad i've had people say "Oh you do look ok" i won't even mention on the thread what comes out my mouth, as i don't need sympathy but unless other's have it they'll never know what it does to you being an hidden disease.
Dapsone is chemo drug which is strong and used on Cancer/HIV/ Leprosy and Lupus but it's classed as a last resort medication. The fevers i get at tea time in the evening and keep going off and on plus it makes you feel like your going through the change...whic i'm not as i had to have the Nova sure operation to burn my uterus out to stop monthly's as kept haemorraghing besides my monthly's. The pain does really hurt and in one way i do understand about your back, as i did my pelvis in twice and was layed up in hospital for quite a while then when i was moved home i had to constantley sleep on one side and moving made the pain unbearable. Do you sit on cushions? as i had to sit on 4 at a time besides having 2 behing my back.
Well my meds knock me fully out unless leg spasms occur but i can have it where it affects my mind and makes me very restless so i pop a valium to help me every other night now. I've got used to my lungs paining me the doctor wants to help me back up the fags yet again because i'm a manic depressive and been on a right cocktail over the years which have'nt helped smoking a fag helps me at times, i packed up for 5mths the once a few years back and then the depression hit me bad and i was soon getting fags, so pointless in a way.
Not resting properly though and not having much sleep like other members will really knock you about, you could always ask your rheumo or GP about some sleeping tablets to see if that would help in anyway and they don't have to be a strong dose just something to help through the night abit.
My hubby ste's the same does anything for me but i've had to learn to pace my life now and especially in the last 2yrs as it's really took my mobility to a bad pace...i use a 3 wheeler rollator to get about and it's great, if you've not got one then i suggest getting one and in your case more with a chair to breal inbetween walking.
My hubby listens like your does but the sister up the hospital suggested me joining a site or if not councilling, as talking to other's going through the same thing helps to break from keep giving the same story to your hubby or family...it makes me feel like a parrot at times.lol
You have'nt gone on and you've expressed what's been eating at your for quite a while and member's are so great, it's just lovely to have that extra support, to me they're my 2nd family.
Gail it's been lovely chatting with you and don't ever think your going on as your not and really do take care.
((Love and hugs your way)) Terri xxx
Angel312 said:
Awww Tez, your words are so kind and really provoke me to think about this thing....Lupus and it's strange ways. It touches so many aspects of our lives and since ppl don't see it, they don't understand it unless they are going through it themselves. I have not heard of Dapsone, but I will read up on it. I am on Cellcept currently for the Lupus symptoms, and not sure how much it is helping, but this is the longest that I have stayed out of the hospital....yeah! The thing that really gets me down right now is the fevers and the joint pain and of course the broken back issues and all the other issues w/my back....ugh This keeps me from sleeping. You know how a fever makes you restless and just plain yukky?(lol) It seems that every evening around 5ish, the temp starts creeping up, and doesn't go too high...usually up to 100.0, only once in a while will it go up higher.....this goes on all night until around 5 or 6am...then I'm so exhausted I can't sleep. grrrr. Sometimes I can nap, sometimes not. Not sure what to do on that one, but I see my Rheumy this week. I am so sorry to hear about your lungs and the pain you have. It seems so unfair that this group of ppl have to deal with the symptoms of this horrible disease...it's sneaky and sometimes so overwhelming.
My husband is awesome and does so very much for me...well practically everything as I just cannot stand for but a few minutes and the pain causes me to have to sit. I try to do what i can sitting, but even that becomes untolerable after a bit. I do like coming here to "listen" and to "talk". It helps to vent I admit. My husband is always willing to listen, but I know that after getting up at 2:00am and getting home at 5:30pm, he's exhausted and doesn't always need to hear my "stuff", and the ppl here have experienced some or all of my problems and I think that's therapeutic for me...it just feel strange at first to tell all of my problems to strangers....you know what I mean right? Anyway, I truly have gone on enough here....lol
Again, I thank you so much for your kindness and information that you give...you are truly helping someone in need. hugs...gentle hugs,
gail