Medications for Hughes and Lupus

Hello there folks!!

I have been a bit busy with my direct marketing business this week - Kleeneze, I am doing all the ground work and getting things all prepared - I can't walk the streets delivering catalogues, so I am devising more cunning plans to get the catalogues in front of people without walking miles!! I may even sell the jewellery that Kleeneze do - Cabouchon, on a party plan basis - this would be like history repeating itself!! My Mum sold the jewellery that my Dad made, they called it "Seer Jewellery", my maiden name spelt backwards. My Mum really did well with selling stuff, my Dad trained to pierce ears and when my Mum was doing one of the party's, my Mum would egg the girls on to get their ears pierced and then ring my Dad and he would go along and do that too!! They were ahead of their time really, quite inspirational really, my Mum did all sorts of things to have her own money, it was really important to her! Anyway...that is what I am doing, trying to earn some money somehow...I can't do a "normal" job because of having Hughes, so I am having to be creative..

I take a lot of medication every day to keep me from being bed-ridden. I take pain killers for my degenerative disc condition as well as the other aches and pains I get with having Hughes and Lupus-like symptoms, I take tramadol and paracetamol. I take an anti-inflammatory for my degenerative disc condition, plus the arthritis type of swelling I get around my joints, I take Diclofenac (Voltarol). I take my soluble Aspirin 75mg every day without fail to stop my blood from being so sticky. I take Plaquenil - Hydrochloroquinine - antimalarials every day to help with the lupus-like symptoms of aches, pains and fatigue. Since starting on this drug, my headaches have improved and I am generally less achy. I also take an anti-depressant every evening, to help me sleep and help with the anxiety of having a long term degenerative condition. I had a bout of depression in 2002 after a particularly nasty divorce. A lot of things came out from my past during some counselling I received at that point and I have had to take anti-depressants on and off since getting ill in 2007. Being ill on a long term basis is a lot to deal with emotionally. I believe that depression is part of Hughes/APS as well though, I think our sludgy blood does affect our emotions and the parts of our brains that control happiness. I am able to have up to 3 steroid injections a year which boost me, I had my last one in May down at the Lupus Centre and I am doing quite well on it actually. I must say that the increase in Plaquenil and the steroid jab have made June and July much better months for me. I took Gabappentin for a while, but it really increased my appetite and I have put on weight that I just can't lose again! Gabappentin works on your brain to alleviate nerve pain - it is sometimes given to people who get seizures or who are epileptic. If the nerve pain does get too much I use it, but come off it as soon as I can again...you do have to come off it gradually though.

Being ill on a long term basis, with little chance of improving to a much better degree is like a form of bereavement. I miss the old Wendy, the Wendy that would dance on tables, laugh, run, joke, get drunk, flirt, do outrageous things....ok, some of these things you have to give up with age, but when you don't have a choice to not do them any more, that hurts. I grieve for the "old Wendy" who would dash everywhere, think nothing of driving 3 hours and then go out til 4am dancing and drinking..The thought of a full on evening out, scares me, I get very het up that I will spoil things for others, be a party pooper or embarrass myself or my family. I do try to still attend things, but it is difficult for me to host any events any more and it is too much to ask my husband to do it, he is not that type and he has enough to do...I do miss throwing a party and being the centre of attention for the right reason. I hate being the centre of attention for the wrong reason - being asked what's wrong? are you alright??? I know that people are curious and care, but I hate talking about being ill, I am ill all the time, so I want to talk about something else!!!

Well, I had better sign off for now, I have stuff to do, hubbie is cleaning cars and mowing grass, it is a lovely day, but I can't sit in it or I will burn and then feel awful...

Take care and thanks for reading.
Much love
Wendy x x x x