New, Worried, Angry, Confused and oh so Sad.......
I am a newbie, and I must admit a real worried one! As no doubt you all were when u were 1st diagnosed with Lupus... I am now 48yrs old. I have had my fair share of medical problems over the years, but for now I will only talk about the ones I think may be due to Lupus... At age 31 was diagnosed with Diabetes NIDDM. For 4 yrs I suffered terrible debilitating pain in my right groin. I saw specialist after specialist from bone, to blood, to Cat Scans, to Gynea's all to no avail. Had 2 laparoscopy's found nothing, GP told me it was all in my head. I demanded to see a different Gynea, and he decided to do an endometrial Ablation, (removal of the lining of the uterus) Still the pain! I could take it no more, and pushed for a hysterectomy.. I won, some 2 yrs on... pain did go away but not completely.. I have suffered with Fast Heart Beats for no apparent reason, just sitting watching the box, and it reaches 130 per min. Dr's could not and still have not diagnosed as to why.. My Mum and Sister have both had heart attacks... Tried Haltar Monitor for the weekend, but because it is intermittent nothing showed up..Story of my Life! Then about 8 yrs ago, started having Vaginal Thrush, Urinary tract infections (systitus) no sooner I clear it up with antibiotics, and Caneston Cream, it would start all over again! Then I started having trouble urinating, especially when my period would be due, I know when that is due to still having the symptoms, headache, tired, fluid retention, mood swings, and that is not just once a month but twice, as I suffer same problems during Ovalation.. By the way I still have my Ovaries... Now back to the wee problem of going to the loola.... I find it stops n starts, or I have to stand, to let it just flow out, I dont have the ability to push it out faster. Was tested in the hospital but they found NOTHING!! Over the last year I have been getting strange headaches, I wake in the middle of the night, and I SWEAR there is someone in my head knocking on my skull... It is not so much painful, as it is noisey... Dr found nothing!! Shooting pain at back of left year while awake, which is quite painful, but does not last long, probably about 2 mins a time, and about 4 times a day, and about once a month! Went to Dr with a rash on my nose n cheek's was told it was Roscea hey I finally have a name to one of my problems....! My Dad he has Roscea too, and he is NIDDM also.. Was put on Doxi tablets same as my dad and they help, not 100% but a little is better than none... Then the biggie comes along, I notice the rash on my feet was different to the normal fungi..However I treated it the same, used a whole bottle of Lamasil Spray it done Zip! Went to Thailand on holiday with my Mum Dad Sister and her hubby, my poor hubby had to stay home to work, as we r self employed.. no work .. no money.. simple.. While on Holiday, my Mum contracted a a rare Flu Haemophilus Influenza and her airways totally blocked off 7 times!! I was beside myself with worry.... Then my feet swelled up like two puffer fish... and a purple and red rash covered the tops... I shopped till I dropped and put the aches n pains in my feet and ankles and calves to that reason... came back to Australia and went to the Dr.. by this time the swelling had gone down, but rash was there, and my toes were turning purple... He done a blood test for Vasculitis SLE feet... It came back Anti Nuclear Factor Titre 1.160 Staining pattern Homogeneous?????????????? any help explaining that would be appreciated... Anyway sent me to a dermatologist, he done a two hole puncture biopsy in my left foot.. went back a week later, was told YES I have Lupus... However he would not give me an answer as to which kind..However on the Immunopathology report that came back it also said Systemmic autoimmune diseases and drugs may induce high titres of ANF with a homogeneous stining pattern. Recommend the assay for anti-DNA Anti-ENA to follow...????????? hel phere too would be welcomes..
I am now being referred to an Immunologist and my appointment is on Dec 14....... The sad thing ontop of my news, is that my poor Dad the same week I was diagnosed with Lupus, was diagnosed with Cancer of the left lung..........AND I AM SUPPOSED TO STAY AWAY FROM STRESS.!! ANYBODY GOT A MAGIC CURE ON HOW TO DEAL WITH ALL THIS, AND STAY STRESS FREE.......... That week I could not, and I mean not, stop crying......... I went to my Dr.. and he prescribes Avanzer to help me sleep and cope with all that is happening in my family's lives right now..
I have read my fellow lupies talk about flu like symptoms.. does having what I call colds like 3 in 3 months sound like it was lupus related? My chest is sooooooooooooooooooooo BAD........ and I am BAD cos I smoke........ I know I know I know......... I am going to give up.. within the next 3 days Monday is D Day... My chest is constantly tight, and gets so dry, I can hardly get my words out... My voice is lower than normal, and when tired, which is most days,, it is sooooooooo Croakie,,, My feet are purple when cold, and get hot and puffy and itchy when hot, My hands are a little purple when cool, and so are my knees.. My bum (shy) is full of what started out to be spots, and now are sore sores... I have not helped them by picking them all the time, I think it is my nerves making me do it, I know I am but cant stop... any advice short of cutting my finger off!! My top back out towards shoulders are in a similar mess, but no so much...... I am very very very photo sensitive, and was told over the years it is due to one of my many medications I take.. They changed one tablet but that did not help...Well that is me pp...... I am just sooooooooooo glad to have found this site. You do such a wonderful job of helping sooooooo many of us lupies, and regular pp to understand this disgusting, debilitating,disease...........You make a difference... and that is the difference between living it out, and giving up.....
I am sorry if this has turned out to be a Novel instead of a vent....... but who else can I talk to, hubby not up on this sort of thing, My Mum and Sister and Dad, well you know how they must be feeling.....I just hope you and God can give me the strength to get through all that lies ahead... Thanks Lupies......For letting me vent my frustrations, worries, anger, and sadness .........Thank U xxxxxx000000xxxxxxx
I am sad
I am blue
I will now feel better
because I have you
My fellow Lupies......