It was 58° out yesterday.. way too cold.. today is 45°
so pack for ALL weather.
What??? Um... OK. Well, I am packing capris & shorts... Tanks, tees and a Sweatshirt... Wearing my jean jacket down. And, of course, my obligatory flip-flops.
Poor Alli! I've had psoriasis since 12 and PA since 28 and it can be so frustrating! I've about done it all and am about to start enbrel in a few weeks. I suggest an anti inflammatory diet it will really he'll her and she can lean more toward her vegetarian tendencies. Green tea is huge helper for me and cutting out artificial sweeteners will make a huge difference (I am still working on that one, I love u diet coke!). It is an autoimmune disease so you're on the money on the whole disease thing and the better she can control the flare ups the easier on her body it will be! I wish I'd have know more about it when I was younger I could've saved myself so much heartache (and body aches!)
Sent from my Nexus 7 using DISBoards
Thanks for telling me this... I sure hope the change in diet helps. Yesterday was day one, and I could tell that she was starving all day. Which, I don't understand... Wheat and bread items are really not that filling - I mean, they are, but they don't stay with a person long at all. She would be a lot more satisfied if she ate some meat. I hope she sticks with it... We are planning to work on a few recipes this weekend - hopefully that helps her and she is able to find some really great "staple" meals that keep her satisfied.
I hope the embrel helps you.
I hope you can get Alli to start eating some meat again. It was a good thing that she got to hear from her Dr. that she should avoid wheat because she never would have listen to you if you said it.
I hope you get a lot done in your sewing room today
Thanks Lillian. So true... I am also glad the Dr. said it and not me - you are right, she never would have listened had I said it. LOL
I hope Alli will choose to change her diet in a way that will be good for her overall health. The beginning of summer break sounds like a great time to try something new.
I hope so too... She was surfing Pinterest a little bit yesterday, and found a few recipes she would like to try... I hope to take some time this weekend and do some cooking with her. Maybe if we are both doing it together, it will help her to stay on track? I hope...
I have got to make some changes to my diet. I find myself making lots of bad decisions lately and justifying it with my stress level, or having a bad day or some other poor me excuse. I am stuck in a rut!
I wish I could say something to help you out, it really is a battle every day. I try really hard not to snack in between meals, but the hardest time for me is right before dinner (usually while I am making it)... I either force myself to wait, or I allow myself something healthy... One of my favorites is slicing an apple, and sprinkling it with cinnamon... It's good for you... Not too many calories when you know you have a meal coming... and it feels indulgent - very similar to apple pie.
Good luck with your errands and sewing room today! I don't think I'd be able to resist the temptations for not working while working from home if I did it day after day. I think Chicago will be a nice break for you and when you get home you will have recharged just enough to get you through your final push on auction bags.
I did really well on my errands and in my sewing room yesterday - I was able to get everything done that I needed to. However, I did get some news about my dad at the end of the day, which led me to ending my day early. Sigh.
Sounds like a great Chicago itinerary! It will definitely not be enough time, it never really is when you get together with good friends that you don't see often enough
Have a great day and a fabulous long weekend! With it being a long weekend, I may have time to DIS but I am usually MIA on the weekends.
Exactly... I am very much looking forward to it!

I hope you have a nice weekend too.
I agree! PA is the pitts! I was diagnosed with JA when I was 6, but the doctors were never comfortable with that diagnosis. When I was in my twenties my doctor said I had outgrown it and they had no idea why I was still hurting. It wasn't until I was in my early 30's that I got the diagnosis of PA. We now know that is what I had all along. (as well as both my mom and grand father) Knowing that your diet can have such a MAJOR impact on it makes me feel more in control. Of course, when I was first diagnosed with it it was basically unheard of...but there are so many meds out now.
Good luck on your Enbrel! I was one of the early test cases of it. It has made such a difference in my life!
Nini
Hi Nini!

It's great to see you back, I hope you had a great trip! I am glad that you finally have the correct diagnosis, and the embrel has helped you. Alli is so young, both the Dr. and I are very hesitant to start her on any meds - both of us would rather see her change her diet first to see if that offers any relief... Hopefully it does.
So - quick catch up while I tried to remember what, exactly, I was supposed to be doing here at work (I remembered and after this, it's off to run reports - doesn't that sound exciting)
Well, you may have been restrained in the Dr's office when the Wheat Bad talk was being held, but I did the seated happy dance for you while I read it! I have been so bad for the past week; I had a cold, got laryngitis and just ate what we had, which was less than good.
The Mickey Bag is epic! Perfectly simple!
I will be waiting in breathless anticipation for the epic DisMeet in Chicago pictures that I know will show up when you all get together.
Well, these reports won't run them selves (unfortunately)
Hi Ruth! Hahaha... Thanks for the happy dance... Believe me - I was doing it quietly in my chair. I was just so HAPPY to hear her Dr. be a forward thinking Dr. and up on her current studies... And that was her dermatologist... Her regular Dr. is not this way - still recommending Alli be on a low-fat Conventional Wisdom diet...

I will be sure to tell her regular Dr. the next time we see her, that the Standard American Diet is not recommended by her dermatologist and the reasons why... Maybe she will dig further into some more recent research about the topic?
I hope you are feeling better and able to get back into the swing of things. I know it's so hard! But I KNOW you can do it!
Me too - I am so excited about Chicago! It's going to be a lot of fun!
Hope you were able to finish your reports. And have a nice holiday weekend.
The Disney exhibit at MSI is fantastic! We went last month and loved it.
I'm so glad the temperatures are starting to get warmer - Ian's class had a field trip to the Racine Zoo and it was chilly but sunny when we got there but warmed up quickly.
And continued prayers for your uncle.
Cool! I am very excited to see it! We all did the :whoohoo: when we found out it was staying... totally changed our itinerary so we could see it.
Oooh - I hope it stays warmer for while we are there... I do not plan to bring anything warmer than capris.... I am still on strike from winter and have no desire to wear warm clothes at the moment.
Thank you for the prayers for my uncle, it means a lot to me!
What a great doctor visit that was. And congratulations on staying quiet. But you must have been doing a major happy dance inside.
There are a lot of gluten free foods that will let Ali have many choices. Even my husband prefers gluten free waffles and the really good gf French rolls to the wheat version. And he isn 't gf.
Thanks Sue... Yah - Hahaha... I was definately jumping out of my skin, as inconspiculously as I could. LOL
That's good to know... I didn't really see anything when I was shopping yesterday, but our local stores are much smaller, and if I go further into the suburbs, I have more of a selection. So, I will look there the next time I shop.
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Yesterday was a busy day for me... I worked in my sewing room for a few hours in the morning... Then I ran to town, did my errands, stopped at the meat market on my way home...
Guess what... Not a cloud in the sky... I just couldn't resist.

Yup, threw on my swimsuit and layed out in the sun for a while. It sure didn't take long though, it was super hot - no breeze - and I started to burn rather quickly.
So, back to my sewing room I went.
While I was up there, I received a phone call from my brother's foster-mom... She had been trying to reach my dad all week, and not having any luck. Sigh... I had been trying to reach him too, and he wasn't returning my calls either. I told her, he just must not be checking his machine, because if something was wrong, someone would have called me. So, I wasn't worried at all. Both her and I decided we would continue calling him, and one of us would have to catch him at some point. I told her to text me if she got in touch with him.
About an hour later... She called me back. She said this news warrented a call, and she couldn't just text it. He told her that he had been in the hospital since Monday, for pneumonia!

WHAT????!!!!!!!!!!! How could it be, that he had been in this hospital for 5 DAYS and not one of us received a call from anyone? I am his emergency contact, and after what happened last winter - I've triple checked this with his Assisted Living home, the Hospital and his Dr... Not only that, but Jonathan's foster-mom is his second point of contact. Neither of us have received calls at all! I have NO missed calls at all this whole week. Nothing! I am so very angry about this... I just cannot even go into it here. I am just so sad for my dad... He has a fear of me just "putting him in a home and leaving him there" and here he is in the hospital for 5 days and not a word from me - or anyone else.

So... In a hospital... 5 days... No cards, no phone calls, no visitors, no one advocating for his care. The icing on the cake... He was in the SAME hospital my uncle is in... My dad would have had visitors upon visitors upon visitors... I am just SOOOO ANGRY!
Last night, his charge nurse finally called me back... She claimed that she was "off that day" and didn't know I hadn't been called. Not an acceptable excuse at all, IMO. She should have called me herself just to double check. So, I ripped into her... I am normally a very calm person, but Josh was sitting right there with me, and he told me after I hung up, that he has never seen me so mad in my life.

And he's seen me pretty mad before... Anyways... I told his nurse, first off, she better march straight up to my Dad's apartment and apologize, and also explain that THEY dropped the ball and are the reason no one was there for him. Secondly, I told her that I want this incident documented in his chart, and a copy mailed to me. Thirdly, I want it documented inside AND outside of his chart that I am to be called for ANY reason, and it better be documented who called and when. Finally, I will be sending a letter of complaint to the administration at the home and anyone else I need to send a letter to (I have a call into someone right now, who would know who I need to contact...).
I am so angry and frustrated... I have spent the last several months proving to my Dad that I wasn't going to put him in a home and abandon him... And there he was, in the hospital, with NO ONE. I would have dropped everything in instant.
So, Change in plans for the weekend... Josh and I are headed up to my Dad's this morning. I need to check on him to make sure he is OK. Afterwards, we are headed to the hospital to visit my Uncle... I talked to my aunt yesterday (one of his sisters) and he is still in a coma - although it hasn't been medically induced for 3 days now... So, it may be more of a visiting the family who is visiting him.
ETA: Last night's entry from Pam and CaringBridge:
Harold showed some progress today by following some commands! He was able to nod his head when the nurse asked him if he could open his eyes. (he tried to open his eyes but he just raised his eyebrow) He also squeezed his left hand when directed to do so (some of the times). Even the "Reuter shake" was back in his left foot! The doctors were optimistic; we're so excited. The neurosurgeon saw some seizure activity on his EEG so he is giving Harold some anti-seizure medicine. Probably that's why Harold is moving more than he has in the past week. The ICU doctor said the decreased brain activity shown on the EEG could be the result of the swelling and brain bleed. They will need to wait until the swelling is gone before getting a more accurate picture. In the past two days, they have drained an additional 700 ml (about 2 pop cans) of blood/spinal fluid off his brain! Harold is still running a fever but it isn't as high as it was yesterday. They do not know what is causing his infection.
Oh, if you stop by Harold's room, you will see that his sisters were trying to help him. They hung an IV bottle of Mountain Dew to energize him. I think the Dew is working!
Keep praying for a miracle! God is good!
We are planning to take the top off the Jeep and having a nice road trip though - so that will make the hours on the road more fun.
I better get a move on it today. I hope you all have a nice holiday weekend. Sending out prayers to all who have requested them.
D~