Address Confirmation

General Blog
1

I've been feeling a bit more emotional than usual. Before I got the flu I was feeling tired--although I've been steadily gaining energy. The Rheumy had approved tapering off prednisone which is a relief because of the many ways it has screwed me up. Work has been hectic, I've chosen to give it top priority and I've been impatient with myself.

Last Saturday I found myself sitting at the kitchen counter getting my Enbrel and MTX shots ready and being angrier than I've felt in years. But I'm feeling better each week so why so angry? Well on top of the usual work stress I had to have my 15 year old cat put to sleep--and of course I was probably incubating the flu, too--but mostly I was angry because I think that I finally got what "chronic illness" means.

It doesn't just mean the aches and pains, it also means boring myself and others to tears with talk of TNF alpha and gluten free food, and whether leaky-gut syndrome is real or not. And how one person's autoimmune illness isn't like another's. And that while Enbrel works, it might just work for now and then what? And then there's remembering where I wrote down which leg I gave myself the shot in last week (on the calendar in my office). Plus the monthly call from the specialty pharmacy to arrange shipment of Enbrel, the trips to the pharmacy for MTX, folic acid, supplements and needles. Back to that call--will I always and forever have to tell that woman on the phone 5 times in the course of one phone call where to send this month's supply of Enbrel? Same as last month, honey. And the phone number you called me on, the one we're connected to each other on right now so you could confirm delivery, yes, that's the number you can call me on--BECAUSE YOU JUST DID! Does Phil Mickelson have to do this?

So I feel angry and impatient. I should be feeling much better and much stronger. But I still feel frail. And I have NEVER, EVER, questioned my physical ability to do anything before now. This feels unfair. And unending. And it is. And I need to get used to that.

No sympathy required here. I'm grateful to have cracked. There was no dignity in the tears. But I did find my new normal. It comes with a monthly phone call in which I confirm my address and phone number. Five times.

2

I am right there with you. I am learning my new normal. It is hard for me at times for 13 months ago I was walking at the Grand Canyon and now I am having trouble explaining to my 10 year old daughter why I cannot plan ahead for vacation anymore.

We will learn to adjust and remember to take one day at a time and if that does not work then one minute at a time.

3

Sometimes having a positive attitude means we bury the anguish deep and think we are well on the way to accepting our fate............and yes, its good to crack and feel the anger we are allowed to feel, it means we accept that we don't deserve this disease, that its unfair. Then we can build our foundation on our strength of character, and that we've looked in the face of the future and said "Bring it on! but I won't let it beat me....I'm still alive and kicking!"

4

Louise- Hard to tell you just got out of the hospital with a very painful and scary bout of illness. That pesky kidney stone has got nothing on you!

Jane- I wish I could cry. I haven't cried in years. That does not mean I don't have times when I suffer a dark night in my soul. I think I would process it a little quicker if I could have a good cry. But It seems my lesson is in slowing down and learning my new normal too. I think anger and sadness are sister emotions anyway. Sometimes we feel angered by a situation other times it makes us sad. I do know when I feel a lot of either it is time for me to slow down and cut myself some slack. I try then to leave big gaps in my day to sit on a bench with a cup of coffee. Or buy myself lunch in the middle of a busy day of errands. I even have a date with a couple of neighbor ladies for a cup of tea on Valentine's day. But I do have to make a conscious decision to schedule the extra time for it every day.

My hopes for all of us is the ability to meet our new normals as they are constantly changing and to cut ourselves some slack. Mousie heads for all! <3, <3, <3,<3,<3 !

5

Amen sister! Be real, tell the truth that this sucks! Then get back at it! Thank you or sharing!