PMR

Hi Lynda did you enjoy seeing your daughter and grandson?

 

Oh Man.....more than I can say!!! We had SUCH a good time. The thing is, we didn't do anything particularly special. Went to Costco (had a Blast!), went shopping, had mani/pedies....just normal, everyday mom/daughter "stuff"....but soooo much fun! Also, she just bought a new home so we spent alot of time over there figuring out where furniture would go, etc,etc. And lastly, my wonderful dog was an absolute CHAMP on the plane....his 1st flight. A great trip indeed! Only problem now, I miss her and the boys More than Ever! But alas, back to reality. As good as everything went, I think it pretty much did me in for awhile. Haven't been feeling too well past couple of days. Constant headache, an almost nonstop stomach ache and fatigued to the Max! I guess it's all par for the course...better days ahead?? You didn't mention what your dosage of pred. is? Don't mean to be nosey, just curious. I'm on 16.5mg for the nect 3 weeks. Ughhh. I sure don't want to gain anymore weight or have any other side effects. I'm already having trouble w/double vision which I see an optham. for next wk.

Ten going down to nine. Started at ten over four years ago, got down to three then back to ten.

Hi Lynda, thanks for your post! I feel for you, you have my sympathy.

I am feeling so much of what you are feeling, your post is actually a comfort, I've just got back from a day with family and was very much impatient with everyone, trying so so hard to be patient and hiding feelings.

I don't know how to deal with people who expect you to be lovely when you very much don't feel it.

I love your line "misery loves company" its so nice to come home and be with people who are feeling the same as me. Although saying that feels wrong because it would be much nicer for you all to feel good.

As you say so nice to talk with someone who is relatable

Hi again margot...loved hearing from you. In fact, I'm starting to look for your name when I get an "alert" on my phone as strange as it sounds, I'm feeling a fast friendship w/you! I know that sounds silly, but I tend to always say what I feel! Anyway, today's been unusually "down" for me. Maybe I'm going through Makenzie (my daughter) withdrawal! Not sure, but I've just been unusually depressed and teary. However, I did have a sorta "come to Jesus moment". I looked at my arms and hands which look incredibly FAT to me at the moment, and just said to myself, "it IS what it IS"! Then I stopped dwelling on it! This too shall pass...Right??? And at the moment my pmr symptoms seem to be under control, so who am I to complain?! I'm sorry to hear you had a difficult day. Been there, done that! And yes, it's SO annoying to have to "act" pleasant when you sure as hec aren't feeling it! Yeah...good times!

Oh Thank you Linda, it does make all the difference to have someone to talk to. I love the fast friendship!

has Makenzie left home recently?

Yes it is what it is, is a good way to look at it. Yes indeed, 'this too shall come to pass"

Blessings to you!!!

 

Hi again! No, actually Kenzie left about 9yrs ago to marry a guy who had a full scholarship to law school in Texas. It was rough then too, but things were somewhat different in as much as I had my health, was much more active than now, and was just more involved w/life as a whole! Fast forward and she divorced 1yr ago, had two adorable sons (3&5), and is now kinda "Stuck" in Texas due to custody issues. We've ALWAYS been incredibly close, but the passing yrs. have just increased it enormously! I'm on a fixed income, so trips to go see her are kinda a luxury! Anyway, that's my "pitiful" story....so embarrassed as others have it so much worse and I Really am grateful for so many other things in my life! I'll be fine. I think it's just a huge combination of pmr, my Crohns acting up, my paralyzed diaphragm misbehaving, and generally feeling depressed. God, how pathetic am I??? I'm so glad you took time to write me....blessings to you as well, my friend!

Hi Lynda, you are definitely not pathetic!

please don't be embarrassed as your troubles are important too, just because others have it worse doesn't mean you don't matter.

I very much hope your daughter will have the custody issues sorted peacefully and soon.

I am thinking of you.

Thx margot, it's always so nice to hear from you and for your kind words! Still not feeling too well, but a bit better than yesterday! Onward and upward! I've got my appointment with the Neuro-opthamalogist tomorrow. A bit nervous about that, but I need answers about this double vision issue I'm experiencing. Wish me luck!

I wish you luck Lynda! let me know how you get on if you don't mind.

Hey margot, if you go to my new discussion on " unsettling news at the opthamologist", you'll be able to read of the "Lovely" experience I had today at my appointment😢. It's kinda long and involved to rewrite, but I'd like to share it w/you! NOT one of my better days to be sure! Hope you're well. Please keep in touch!

Hi Lynda thanks for this, I can't find your discussion but will keep looking and will find. Thanks

Hey there....thanks for responding.

Started at 20, got down to 5 and relapsed. So on and off, every few months, I can't get down to 7.5 without relapsing, He put me on Methatrexate so i could stay there...but it didn't work. Went back up to 10, then pain persisted, so went back up to 15 as I had a business trip planned that required a great deal of walking and driving. I am dropping to 12.5 this week and I see the Dr next week.

Thanks

Your body is shouting at you that something above 7.5mg is the dose you need - and keeping allowing a flare makes it more difficult to get things under control. From 10mg reduce 1/2mg at a time and stay at each new dose for 4 weeks. When you have symptoms - go back to the last dose that worked. 2.5mg at a time is too much - you miss the dose you need. Why on earth do they keep trying to rush patients?