Just symptoms, need to talk of

[MichelleAnn]

I have been noticing my butterfly rash more and more the last week....comes and goes but is now more there than not. Also a little more joint pain...I do not think it is a flareup as my other usual symptoms are not there YET.

I think it is a classic case of sadness, depression. I miss my beautiful mom as she passed away January 6th. My best friend. It is now hitting me, the lonliness, I am ok within the normal grief cycle, it is a long road to get through and I take ativan when needed for the anxious feeling in my stomach so I can follow through with normal activities.

I guess I am complaining of my symptoms, whining, Winter time is long here in pennsylvania, being stuck in the house, but in reality, I feel like doing nothing with myself.
I found since I have Lupus, I am more a couch potato than anything. I used to be always so active, have everything done and perfect. I dont mind being a couch potato most days since that is how I rest to do things that have to be done inbetween, like cook dinner etc.
Energy is little and few so I save it up for when my children are home from school.
I think stress, and all is contributing, I am on 10mg prednisone and plaquenil, amongst other drugs....without the tizanidine (zanaflex) for the muscle tightness,spasticity, i would be in trouble. Helps with stiffness in joints also and with the pain while I sleep.

well, not much about this email, but I am whining, talking, venting, I wish I was ME, the ME I once was, but I have now filled the shoes of the NEW ME....this NEW Me is different, as time goes on I miss the old me less....which is the grief process like with my mom dying.

Lupus, I saw people with lupus are said to have more pain than RA patients in a new poll....not sure where I read that, but I know my pain is overwhelming at times....people are tired of me complaining, so we suffer in a private lonley way....they cant understand the fatigue and pain is not like normal fatigue and pain....

I came across this old article on "Toxic fatigue of Lupus" http://www.elef.rheumanet.org/newsletter/4/a-4gr1.htm

Thanks for listening to me rant a bit..
:snow:
MichelleAnn

[millykitty]

I am sorry for your loss. I am sure it just compunds it the sadness of dealing with your pain and the loss of your mother. I hope you can find comfort and solace knowing you are not alone.
Hugs,
erin

[sue90x]

Oh (((Michelle)))),
your grief is still raw
so very sorry to hear your sad news I still cry for my mum somedays it's 13 years since she died and I'm 41!
wrap yourself in a fluffy blanket and allow yourself to be a couch potato, and allow yourself to cry somemore too
love and hugs
Sue xxx

[Maia]

It sounds like you are prioritizing your life in a very appropriate way to me; you have to save your energy for your children. Just realize that... just as there is a new you right now that is adjusting to life with lupus and needing to take things easy... that there will also be more new you's in the future. And those "new you"s may be able to do more of the things you used to do. You're still early in the dx and treatment process, things really may get much better for you in the future regarding pain and fatigue of lupus. Either due to drugs/treatment, or due to the often natural flare/remissions of lupus.

So sorry to hear about the loss of your mother. Remember the good times...
wish there was something that could take away the pain that comes from losing someone we love but there's really just not much that can do that.

[LoopyLoo]

(((((MichelleAnn)))))

It's still very early days since you lost your Mum so don't expect too much of yourself.

At least you recognise that you are still grieving and you will go through many emotions including anger. It sounds like you are doing a good job of looking after yourself & also taking comfort from your family.

Take care,

Pam xxx