View Full Version : hi everyone,new to the sight. 4years down the line,finally diagnosed!!!

06-16-2011, 03:44 AM
Its taken a very long time but finally all drs agree i have lupus even though bloods are all normal.i havnt been able to work since all my symtoms began, but would love to know how does one get a job when they have lupus,what kind of job could you do realistically,i feel totally useless and letting myself and my family down.
i live in the uk,and presently on income support and disability level 1.although i feel like i have to prove im ill all the time.
i'm forever forgetting to take my meds and feel very depressed all the time,
the brain fog is getting to a serious level now where it is effecting the welfare of my children,although my husband has been amazing ,i feel there is only so much he can do on his own,his life has come to a stand still.
i feel very guilty and bloody angry with myself,all i do is sleep,am waiting an iron infusion,as my body cant store it... anyone else have that problem?
also i think im having seizures in my sleep,but scared to tell the dr incase he tells me i cant drive,i need to drive to collect my daughter from school,thank god my husband does the morning run,i cant usually function untill noon!!
there, ive had my rant,i guess you've all had a go,i sound so negative,and hate myself even more.I JUST WANT TO FEEL IN CONTROL OF MY LIFE AGAIN.IS IT POSSIBLE???

06-16-2011, 05:39 AM
Hello Dear Penny, welcome to a great family who will encourage you when it is rough and give you a lot of sound wisdom and advice.Yes we have all had our "rants" and still do on bad days:). I'm so sorry it is so hard for you. Being able to contribute is so important yet nearly impossible at times. I'm so glad your husband is so good. I live in the US so I don't know how things work in the UK. So sorry I can't help with advice here. I am still able to work but with all the drugs and symptoms it is getting harder and harder.I am worried about that at times as I am alone.

As far as the brain fog, there is a good humorous thread on brain fog. It helped me so much to read it.It hurts my heat to know you hate yourself. Penny this happened TO you. You didn't choose it. You are a couragous woman for waking every day and face this dreaded disease.

I must tell you I am concerned about the night seizures being left unseen and untreated. I know others on this forum who have seizures will advice you as to what to do.

As far as control goes. This is what I do for that. When I have to have an IV, I buy myself a pair of earrings. When I have to be in bed, I read a great book, write letters to encourage friends, etc. I fight like crazy to keep this disease from steeling my life and joy. I hope the fatique lifts for you soon and you can function a little more. I have anemia but not anything like you as far as transfusions go. Gosh I'm sorry.

Again, welcome to our family Penny. There are many here who can help bring more quality to your life ((hugs))

Please know you are in my heat today and you are not alone.

06-16-2011, 05:47 AM
hi penny,
welcome to our family.

i also have had to go onto a disability pension.
there is quite a few who can continue to work.
one of the things that help is getting the medication right.

once the medication is correct, hopefully the symptoms decrease.

there are 7 stages of grief.
we need to go through these stages to progress in our lives.
you need to grieve your old life, in order to accept the changes that are happenning to you.
it may sound silly, or different, but many of us here will attest to the grieving.

there is a couple of threads about this.

i hope you can get the doctors to sort out your meds.
some of them react quickly. others like plaquenil take months to take full effect.

06-16-2011, 06:11 AM
Hi Penny,

A warm welcome to WHL and there's so many threads for you to learn you condition by and besides Lupus have they said if you have anything else, i'm from the uk penny like yourself.

Penny refering jobs there's a lot of member's who hold jobs but still have to phone in some days not being able to attend because of how ill the Disease makes you and you should'nt be angry because things can hit we out the blue and you seem to have an understanding hubby like myself, my husbands took on alot more but does it because he loves me and knows i need the help.

I have two forms of seizures and although you need to drive to get your child and you think your having them at night, you must let your doctor know because i would'nt like to think of the out come if you fit while driving and also because your hubby should know incase an ambulance needs getting because there is 135 different seizures and you could have anyone, some can be mild other's more severe.

Your sleeping more though because your an anaemic and that takes you to a level where you can hardly move, when you have the infusion are they every 3mths for life or are they just giving you one to boost up your system because i have anaemia and i'm taking a folic acid tablet daily and B12 Jabs for life now because of the lupus, my reading was 8.0 which is very low and i always feel myself dropping more on the second month before my other is due.

Rant as long as you want mate as there's always someone with the site being worldwide and it will be nice getting to know you.

Terri xxx

06-16-2011, 08:28 AM
Hi Penny! I think you are going a bit through a depression phase right now. All I can tell you is that it will get better, honestly. I experience the same feelings regularly where I fall into a deep black hole and it's difficult getting out of it. But I manage everytime somehow and you will, too!

You need to see a good rheumatologist. Get your GP to refer you to one and take it from there. You might need to get a different medication but until then I would not stop taking it.

If you forget to take your medicine, set yourself alarms. On your mobile phone or you can even get a medication dispenser that comes with an alarm.

I've had lupus for almost 20 years now and I am working a full time job (40-50 hours) in an office, so it is possible to work with this condition. I am tired a lot and I can't even imagine how stressful it must be when you have kids so if there are any things your children can take off you or your husband or friends then tell them. There is nothing to be ashamed of if you ask for help. Most people will be glad to help you if you ask them.

Please have your seizures checked out, it's really important. They can be treated too.

We all have our rants and downs, that's what this forum is for. Don't despair, things will get better. Get yourself an appt. with your GP and insist on seeing a specialist!

Here's a big hug for you and lots of strength!

06-20-2011, 12:10 PM
Hello Penny,

How are you since you joined the site..please keep we updated please and i hope your days been a little less pain free. xxx

06-20-2011, 01:15 PM
Hi Penny! I am so sorry that I am just seeing this thread.

I understand exactly what you are going through. I went for a long time with the doctors trying to find out what was wrong with me. While they searched and searched I began having night seizures although I had no idea why I all of a sudden began to urinate in my bed. I told no one because I was humiliated but all that led to was my seizures getting worse and moving into the daytime and I had a tonic clonic (formerly known as grand mal) seizure in my office and was hauled out in an ambulance. The neurologist told me there was no more driving until I go 6 months without a seizure but I couldn't go back to work for 6 weeks. I HAD to work! I am a single mother and I worked 35 min from my office and there were no buses. I tried not to panic because they surely would figure out what was wrong with me within 6 weeks and I would be all well! Sadly it didn't turn out that way. The doctors refused to diagnose me so I didn't get the treatment I needed which led to CNS involvement from the Lupus and I have yet to be able to go back to work.

I am on disability and that was the hardest thing to do but please know that while it looks like you won't make it because of these changes I promise you will. It won't be easy but with the right medicines, both for the physical symptoms and the mental/emotional, things will start looking up. I am really glad that you found us and you now are part of our WHL family and we will always be here if you need a place to vent!