CarePage Update

I know, I know, im cheating by using my carepage to update my blog... ill try to get better at it. but here is the latest carepage update

Pottery What Happened!?

What happened last week? The hospital for three nights?! Has been the question I have been hearing a lot? For those who do not know, For the first time in four years last Friday I did pottery again. This was a BIG deal. Was told I would probably never do it again because RA. When I was told this I smashed everything in my little basement studio, ruined glazes and then covered up the wheel and ALL things pottery – haven’t really touched clay in four years. I got the OK in the summer to try it again, poked my fingers in clay with my friend Melissa and that was it. But on Friday I actually threw and it was AMAZING. I was shocked my chubby, swollen RA fingers could actually do it! SO great. HOWEVER, Friday evening landed me in the ER and later than being admitted to CDH. SO…Did doing pottery make me go the hospital? Did I have a reaction the clay? Was it RA? Could my hands not handle throwing? I don’t understand why it would be the Addison’s? These were questions I kept getting this week….Truth of the matter is… no one REALLY is sure why my Addison’s acted up Friday or why I truly ended up in the hospital Friday with my Addison’s all starting to go bonkers on me. But deep, down in me I have a REALLY hard time believing that God would show me that I can still do something I love and am passionate about and then have it make it me super sick and “take it away from me” cause that’s kind of cruel AND the God I know is not a cruel God. So, As Dr Kassar said… One main thing Addison’s does is responds to “stressors in the body” and earlier in the week I had gotten cold hives, joints were up & down because of the whacky weather and any human who hasn’t done an activity they love in four years would have some “sort of emotional baggage with them” so ALL of that ONTOP of the actual physical stress of throwing the pottery’s could of triggered the Addison’s to act up. So you can call it what you would like – my verdict has not been made yet, except one that is frustrated. So there is the tale of me in the hospital this past week. I will tell you that I felt so so sick Friday and was so thankful for my brother matt taking the time to go the ER with me even though he was SO tired. The ER time went SO smoothly, we got a wonderful nurse (who I hope passed her boards this week on Thursday) and my favorite ER Doctor. Things were great! Got the meds in me as fast as we could of got them in me. As much as I did NOT want to be at the hospital I KNEW I needed to be there and was glad I was there. I ended up being admitted to the 2nd floor which I have been on but usually I am on 4th. I go to have some nurses who were there for over 30years and they actually knew my dad, which was cool, and neat to talk to them about him and hear some stories they remembered about him. This time I got to leave the hospital a little earlier than usual because we decided to try going home on a higher does of oral meds. Yesterday I would say things started to feel somewhat “normal” again in terms of the Addison’s.

The RA still seems to be staying pretty stable, we are just dealing with the issues we can not deal with when things are not stable – the crappy feet, the issues with my IT band and knees. I SHOULD be going to physical therapy 2-3x a week but well gosh darn it sucks and is really painful and hard to go to. My goal is to get back into the swing of things this week now that im out of the hospital. The knees are bothering me, especially with the cold weather getting worse and worse. Im getting nervous about the upcoming months but hey- I guess ive managed worse, what’s winter when you need a new knee? Right? Spring is the new goal for the total knee of LEFT knee after plastic surgeon and him looking at scar, so that’s what im holding to.

University of Chicago received my medical records from my doctor’s office about a week ago ☺ so they are having fun with that. Once they have reviewed enough information they will schedule my appointments with me.

This week seems like a “calm” week and that’s what Im hoping. I see my rheumatologist the end of the week. Then next week is infusion, labs & testing week. YUCK.

Like always… thanks to those who visited me, thanks for nice kind messages, thanks FOR ALL the continued prayers, its what keeps me going ☺

LOVE to all
Mandy

“Addison's Disease Or Adrenal Insufficiency results when your adrenal glands are damaged, producing insufficient amounts of the hormone cortisol and often aldosterone as well. These glands are located just above your kidneys. As part of your endocrine system, they produce hormones that give instructions to virtually every organ and tissue in your body.” Mayo Clinic

30 Things About Me - invisible illness week

Its been invisible week and I am blogging for it. You can view the website HERE.

30 Things About Me

1. The illness I live with is: Still’s Disease/ Rheumatoid Arthritis, Sojgrens and Addison’s

2. I was diagnosed with it in the year:  2009 3. But I had symptoms since: Probably since a child and for sure high school 4. The biggest adjustment I’ve had to make is:  Not being able to do things I use to do before I got sick. Loosing my independence and having to ask for help things that use to be simple for me to do: cooking, doing dishes, doing my laundry.
5. Most people assume: That I am ok with my illness. 6. The hardest part about mornings are: Putting my feet on the ground and taking the first few steps and taking off my night splints. 7. My favorite medical TV show is: House, Greys Antanomy, Untold Stories of the ER 8. A gadget I couldn’t live without is: My iPhone! 9. The hardest part about nights are: Taking all my nighttime medicine and getting ready for bed... changing clothes, washing face.. 10. Each day I take __ pills & vitamins. (No comments, please)  18 11. Regarding alternative treatments I: I am open to try just about anything. I have done acupuncture and that helps ease my pain in my joints. 12. If I had to choose between an invisible illness or visible I would choose: NEITHER.
13. Regarding working and career: I love teaching and my job, however my body does not like it. Makes things very difficult and hard.
14. People would be surprised to know: That I cry a lot and get really mad & frustrated very easily. 15. The hardest thing to accept about my new reality has been: All the loss that I have encountered and how my joints and body has changed. 16. Something I never thought I could do with my illness that I did was: Give myself shots and have my knee replaced. 17. The commercials about my illness: Make me wish that I only had ONE disease. 18. Something I really miss doing since I was diagnosed is: Working out, going shopping, going out for wine. 19. It was really hard to have to give up: My normal clothes, going on vacation. 20. A new hobby I have taken up since my diagnosis is: Reading again and being more crafty. 21. If I could have one day of feeling normal again I would: I don’t know! 22. My illness has taught me: I am stronger than I thought and a pretty good fighter. 23. Want to know a secret? One thing people say that gets under my skin is:  “are you better yet?” 24. But I love it when people: Come over to my house! Or when im having a hard time just sit with me and let me cry 25. My favorite motto, scripture, quote that gets me through tough times is: Phillipians 4:13 “ Whatever I have, wherever I am, I can make it through anything in the One who makes me who I am” 26. When someone is diagnosed I’d like to tell them: Be patient with others. 27. Something that has surprised me about living with an illness is: There is never a dull moment and you can never really predict things 28. The nicest thing someone did for me when I wasn’t feeling well was: make me dinner, clean my house and help take care of my dogs 29. I’m involved with Invisible Illness Week because: The website is very encouraging and want to help educate others about my disease and what I am living with.
30. The fact that you read this list makes me feel: happy.

30th Birthday Party

Here are pictures from the Pink & Orange Croquet Birthday Party I had back on June 30th.

It was a fantastic day!

Grilling!

Well, its SUMMER! 

Officially based on the calendar. It was also just said on the news if the Chicagoland area doesn't get water soon we will be in an official drought! wow. Anyways, with summer comes GRILLING. I LOVE GRILLING. If I could grill every night I would. If I could grill all year long I would! I am not sure why I have such a love for grilling but I do have lots of fond memories from my childhood playing outback in the yard while my dad and brothers grilled. The smells... the food... the company... GOOD TIMES. If you drive around any night now with the windows down you can smell people grilling. Well, one thing I am realizing is that i have watched a lot of morning TV these past months. From this i picked up a few new grilling tricks this year and some great new recipes. Just about every morning I get up, hobble downstairs, turn on ch.5, let the girls out, take my meds, make breakfast and coffee and then sit on leather chair to watch The Today show. Its true. Well, the month May and June there have been lots of segments on grilling. NOW I am not the biggest fan of watching Martha Stewart or Rachel Rays show or even them on TV, for some reason they kinda erk me... however... I DO LOVE their products, magazines and their GRILLING TIPS! Both ladies are very talented at what they do, its very obvious. It is SO nice that they do "easy" cooking. That's what I need. Fast. Easy. Especially with RA & AI, I fatigue fast and can only do so much prep, cooking and clean up. I enjoy cooking its just hard on my body. Lately, id say the past few weeks I have been able to grill on the weekend and I invite some friends and sisters over to help join in the fun or at least help eat what I cook. Cooking for one isn't the funnest, so much more enjoyable with company. Tonight was one of those nights. I tried  Rachel Rays grilling - asparagus and Martha Stewarts garlic potatoes --> yum yum were they good! On Thursday with my cousin and sister i tried making Rachel Rays grilled corn & black bean salad-that was good too. SO, if your like me and like to grill, not the greatest cook, and need some good easy recipes... i highly suggest Rachel Rays Grilling Guide and Martha Stewarts Grilling Recipes as well. 

A really off day

Last night I went to bed with what I had hoped to do during today... And today when I lay awake in bed still hoped to do those things...But then I got out of bed and started to move and things went south and I had a really off day...

- my foliculitis rash got way worse,- the bumps are more intense and itch more
- my feet hurt Sooo bad I seriously couldnt put any pressure on them- I stayed on my leather chair in my living room all day with the exception to pee and get dinner. I was slow and held my pee as long as i usually do that I actually wet myself cause I couldn't get to bathroom in time- awesome. I cried then laughed.
- my thumbs remained out of place most of day and hands killed I could barely hold anything
- mouth sores nasty
- felt queasy
- had all over nasty body fatigue
- I was extremely tired all day cause I didn't sleep well last night.

As you can imagine it was a hard day. I attribute a lot of today's crap because I didn't have my Lyrica for two days and yesterday I took my methotrexate. It's just makes me sad for myself and that this is my life at times. But then as hard as it is I am blessed and God gives me the strength and reminders I can do it... Like
- calling my sister in law who picked up my perscriptions, lunch and Popsicles for me
-my niece coming over and washing the girls, brushing the girls and playing with them
- looking out my window and seeing a cute lil snowmen my brother & his twins built
- talking with my older sister randomly though out the day and her constant willingness to help me
So... Yes as I lay in bed with Darla contently chewing on a bone while Olive is jumping on top of her I am glad today is over and tomorrow is a new day... Who knows what it shall hold.

Here is a part of lovely rash, darla in sink, and girls chilin with me (I love pictures!)