My life with Lupus, etc.!

[picinisco]

I'm new here. When I was born, my parents were 'not allowed' to see me for a number of days...that concept sounds crazy today but that was 1954 when that actually happened. My mother was Rhesus Neg blood group, I was Rhesus Pos...I can only guess there was a mother-baby blood type incompatibility. I 'looked' a very healthy baby/child but was often 'unwell'n bed, fatigue, 'growing pains' as then described...and spontaneous bruising. That was age 7, by 17, bruising , bleeding (heavy menstruation) prominent. By 19, I underwent Splenectomy for auto-immune Idiopathic Thrombocytopenia, thought to be the natural precursor to Systemic Lupus Erythematosus , which was 'finally' diagnosed, age 22. My prognosis was not good. By then, I had done S.R.N. training (chosen to do in 2 instead of 3years). I collapsed before my final exam. However, all my intense studying served me well, in my future life of so many medical conditions. I believe 'knowledge is strength' and being a well-informed patient can literally save your life...the N.H.S has become overwhelmed, especially by Covid 19....you have to manage, observe & correlate your symptoms, requesting blood tests wherever necessary. I have MANY medical 'labels' - Past history of the I.T.P. I mentioned, Systemic Lupus Erythematosus/Mixed Connective Tissue Disease/Interstitial Lung Disease/Raundaud's/Sjogren's ...and, sadly, since a totally unexpected Myocardial Infarction, this Sep 12th. resulting Left Ventricular Cardiac Failure. I say 'unexpected' as not recognised in any 'high risk group' (not obese, lifetime non-smoker, non-drinker past 2 years, vegetarian since 1981, 'etc' ) HOWEVER, now clear, one of many (Including 'young' ) women with Lupus , diagnosed with Cardiovascular disease, including 'accelerated atheroma' . I have faced MANY 'challenges in my life...this counts as one of the most challenging! As local Cardiology follow-up / Cardio Rehab ceased with Covid19 taking precedence, my above-mentioned 'self knowledge' has been invaluable in monitoring my cardiovascular problems. This includes readjusting to many cardio-medications, including Entresto on 4th December.

[lupus-support1 Administrator]

Welcome to LUpus Patients Understanding & Support at HU.

Your story is extraordinary and moving. From the moment you were born you were separated from your mother, which must have been very traumatic. Your childhood marred by illness.

Do you have a support network?

We are here for you and if you need to talk, please do so here. You can also contact me at any time.

With good wishes,

Ros

[picinisco in reply to lupus-support1]

Hi Ros, thank you for getting in touch . Yes, re the separation, another hospital did the same when I was around 1 or 2, I had Colitis and they stopped my parents seeing me AGAIN! My Papa really told them...that I would think I'd been deserted! At least they then allowed me to see my parents, through glass...it's a clear memory...my mother's headscarf and father bringing me bananas! I probably then gained the label, 'Strong' , which continues to be used of me, especially since the sudden intrusion of the 'heart attack' in my life. I was diagnosed in 1976 and, here, in Wales, was referred (by doctors and in many newspaper articles) as 'the girl with the rare blood disease' - by 1977, a caring local G.P. referred me to world's 'authority', Rheumatologist, Prof Graham Hughes at London's Hammersmith Hospital - from my first appointment, I was in a Waiting area with many women, who had travelled , worldwide to his clinic...I realised it wasn't as 'rare' as made out. In fact, on leaving hospital, I looked it up in my Nursing books, described, "fatal, incurable" I made it my goal to create up to date information. distribute it, make contact with MANY others around the U.K and States. I was there , at the start of the formation of Lupus groups and was P.R. for South Wales Lupus Group, raising knowledge and funds. I continue to 'study' Lupus, gather and share information... I continue to cope, to be 'strong' though, it's been YEARS of this...gets exhausting by now! I love life. Take very good care of yourself! Paulette.

[lupus-support1 Administrator in reply to picinisco]

Paulette, I was going to say that a diagnosis at 22 yes at that time is rare. I was also diagnosed by Dr Hughes & began an online psychological support service for people affected by SLE.

I am not at my computer until later, but I will contact you about another website that was started 15 years ago that might interest you.

You don’t have to be “strong” alone! I mean it when I say you aren’t alone!

Best wishes,

Ros

[picinisco in reply to lupus-support1]

Thank you! Actually, I collapsed, hot Summer of 1976, rushed into local Singleton Hospital, Swansea...my blood sent to Cardiff hospital...and 'somehow' I finally got the diagnosis I SO needed...BUT then I was 'left to get on with it on my own'...until that caring female G.P referred me to Prof Hughes. Have a good day! Paulette.

[lupus-support1 Administrator in reply to picinisco]

Hi Paulette & All HU!

We have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden!

Please use the following to complete the Date of Birth entry: nn-nn-nnnn where n=number. Thus, if your birthday is 5th May 1968, enter: 05-05-1968. Use the “-“ separator and not the “/“.

With good wishes!

Ros

Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.

[picinisco in reply to lupus-support1]

Hi Ros, sorry for my tardy reply...I'm currently attempting to adjust to a cardiac medication, lowers already-low BP noticeably...must stick with it...makes any emailing difficult...and, currently trying to register with new Patient Portal/ Patient Knows Best, to be able to view my blood results...there's a problem Registering at the moment....ain't that the way? Your Lupus Notice Board, specialising in councillor/psychotherapist support sounds excellent...but, for the moment, I won't become a member...too much 'other stuff'..thank you though!

[lupus-support1 Administrator in reply to picinisco]

Apologies unnecessary.

Contact me any time. I can register you myself when ready. It sounds as if there's a lot going on for you.

Stay safe & be well!

Ros