Hating lupus is not the answer but sometimes it helps........

[amandalilley]

What more does lupus want.....

Changed diet

Exercised

Gave up smoking - 5 years ago

Gave up the hash - 5 years ago

Have never drank

Dont party

Watch what meds I take

Relaxation

Meditation

Hydrotherapy

Massage

Counseling

Resting

Positive thinking

Changed jobs to accomodate changes in disease

Stopped working 2 years ago as advised due to unpredictable nature - even asked DWP fir a job, explaining, as a disabled person, a past manager of staff and pretty good commincation skills, I would be an ideal candidate and it would show that they themselves were being positive towards finding disabled peopld a job..... they turned me down... lol 

Its had my liver, lungs, kidneys, eyes, brain, bones, joints, hair (everywhere! Oh yes, everywhere.. lol), confidence, heart, nails, stomach and even caused pain in my most intimate areas, yes, ladies and gents, my virgina has had sooooo much pain, I wish I had bern born a bloke....

AT YET......I HAVE YET ANOTHER INFECTION, BROUGHT ON, OVERNIGHT, CAUSING SUCH EXCRUCUATING PAIN THAT ALL I WANT TO DO IS SCREAM, CURL UP AND HIDE FOR A WEEK......

And now I have to choose... more antibiotics to clear the infection that has be re-occuring since October and suffer the side effects of nausea, vomiting, stomach cramps   OR

DONT take the antibiotics and suffer the virginal, kidney and back pain and hide for a week until it passes...

HOBSONS CHOICE -  ????

Answers please on a postcard.

Thats the way of lupus, take your choice you pay the consequences.........there is NO right or wrong way, there is only the lupus way at that moment at that time.

So, I am being the good patient and taking the antibiotics and suffering the consequences.....waiting for the infection to pass and then waiting for the next one to appear because according to consultants and drs, there is nothing more that can be done as low dosage of antibiotics will cause irreversible damage to the transplanted kidney......

Thanks lupus - today you are hated -tomorrow - well, thats another day.

[Barnclown]

😨😖😤.....my version of this doesn't include a kidney transplant, but is otherwise quite similar (all my adult like, winters especially have meant months of severe rapid onset complex persistent pattern UTIs+pyelonephritis) and had gone on for 61 years before immunology & urology decided to try me on 2 week courses of co-amoxiclav 625mg for each infection....(although yes I do take 100mg nitrofurantoin approx 1x per week when reinfect ion could've occurred e.g. after sex).  So far so good: only 1 infection this winter....but am now being investigated by the Pelvic Multidiscipline Team gyn re DES-related CCA (vaginal clear cell adenocarcinoma)...& on & on 🍀🍀🍀🍀

[Shadows-walker]

Hi I am hiding at the moment 🙁

[amandalilley in reply to Shadows-walker]

Hey hon.... r u ok?  hiding cause you need or want to? Or both if like me today... lol

Sending loads of hugs and love to help you through. Xxx

[Shadows-walker in reply to amandalilley]

Thanks was taught to self Catharses yesterday not easy , and eldest daughter daughter got anexity depression and OCD . And our dog got hit by a car on Tuesday he's ok but she's expecting me to fuss her and I really can't , it's her brothers birthday today and she's in her bedroom now not speaking to anyone , my head feels like it's got an axe stuck in the left side of my head my shoulders back and tummy are in agony and I hurt and I keep getting double vision so I am in bed hiding . Sorry for moaning but really fed up .

[amandalilley]

I am so sorry you are feeling so bad. Its seems as though the universe has decided to hit you square on the jaw and taking your family with it.

I am not great at advise giving but I can empathise and am happy to listen at any time if you wish to rant. 

Sometimes just letting go and being honest in a space such as this, allows your body and mind to take things one at a time - half a step is better than none, but I also appriciate thats easier said than done.

May your troubles be less and your blessings be more and nothing but happiness come through your door - i have this saying next to my mini Buddha.....

Sending you with all my strength, love hugs and hands of help to see you through such a rough patch.

Mandy. Xxxxx 💖👋👋👋👋👋

[Purpletop]

Firstly - I sympathise. I once started to make a list like yours but I got so depressed I just gave up. 

About the infection - I suspect you're having them because of the high dose of immunosuppressants for the transplant? Will you stay at that high dose forever or could you reduce after x years? 

You've been through so much with the transplant, though, it would be counterproductive to risk it now. So as you said, antibiotics it is. Maybe, as Barnclown said above, it is worth asking your doctors whether you could try a profilactic treatment (i.e. take something preventatively) rather than wait until you have yet another infection. And as they are preventative, maybe their dosage can be lower and therefore give you less side effects. Rather than give you huge doses when the infection hits. 

You poor thing, it's awful to be in pain and on antibiotics on any given day but on Easter?

[amandalilley]

Hi, thank you.

Anti rejection drugs stay the same, am only on 5mg of pred.

Low dosage of the antibiotics is not fesible as only one kidney and long term usage damages the kidney which us only working at 1 3rd capacity since being transplanted.

A rock and a hard place my dr says...

Constant infections just so tiring and harder to beat each time it happens.

Everything worse since the meningitis and septicaemia in March 20th 2014

Its no problem, just need to rant, lots of people worse off - universal blessings to the whole of Belguim and all caught up in the atrocities.

Much love to all fellow lupies, now where are my bloody antibiotics.... lol