Here we go

Well, this afternoon has been one that was filled with LOTS of nerves, panic and anxiety because my dear friend Lloyd and his buddy and my new pal Alex with University of Chicago Friends and Family called saying they all of sudden they were able to get openings tomorrow for me – EEK! I was told when given an appointment you take it- but TOMORROW! I was told end of December beginning of January… this girl who plans, thinks things through, sorts through details ect… NOT READY, but here we go. Tomorrow Wednesday November 20, my journey with University of Chicago to get FRESH eyes to look things over shall begin AND we shall begin in the area of Rheumatology. This is the “easiest” of the areas that we are looking at. Tomorrow is an appointment, and im hoping that’s ALL it is. After talking with Alex & Lloyd and trying not to puke on the phone with them (when im really anxious I puke, not cool Mandy) we got the details squared away with things down at their end  THEN my end here began…phone calls began… who could go with me, my doctors needed to be informed, papers need to get ready, blood work… ect.. AHHH… Mandy a hot mess… In true fashion sent out the texts to family and my “Mandy family” and well as the night has progressed… I have been slowly calming down, I can do this… here is what I have been reminded and am constantly reminding myself:

-       my timing is never right, Gods is

-       I am created by God, although my body is unique -I am His, my diseases don’t define who I am. SO, yes let the doctor and his fellows exam me, poke me & my unique body but let them also see ME, Mandy.

-       these doctors are NOT trying to find anything NEW, just looking things over to see how they can HELP. Part of my nerves – every time I have seen a new doctor they tell me something else is wrong with me. But we have nothing new we are trying to figure out, we just want to see if we can improve, change or better things.

-       ive been down to U of C before and it was a great experience

A good friend of mine is going down with me and we heading down shortly afternoon. We have to stop at the clinic here to grab some things from my doctor and then we are off. My actual appointment is at 2:20. So… we shall see how it goes… and the start of another chapter in my book begins (if I ever write one)...

 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you HOPE and a future.
 Jeremiah 29:11

Going Back...Teaching!

Well... both doctors have filled out my medical release forms for me to GO BACK TO WORK this fall. Yup. 5th Grade here I come. I am SO excited, and also beyond nervous about it. It will be nice going back to work having all my energy back and feeling more like me again. I am just nervous about my joints and the pain I will most likely encounter. However, I work with amazing people who are supper supportive and my classroom is all set for me to be able to sit at various places around the room. We also have my other accommodations in place as well.

This week has gotten me very excited about work because on Monday I got to together with five girls from work to hang out, catch up and have dinner together. It was SO much fun and I forgot how much I really enjoy their company. Then On Tuesday I went to a conference all day on science and teaching with the common core. It was from 8:00am -1:00pm I got up at 6:30am, took care of the dogs, took care of myself :) and then was out the door by 7:!5am! The best part of the day... my morning stiffness was gone within 15-20min and it was a really hot and humid day! I felt great!

 The conference was good. The keynote speaker was a little on the slow/boring side but that's probably because he had SO much information and data to present and just read it off a power point. However, I really enjoyed the breakout sessions. We did some really neat hands on activities with mirrors and made a kaleidoscope. Then we also talked about different strategies to incorporate the common core standards into science using their curriculum.

Then TODAY my dear friend and coworker Morgan came over. We went over my schedule for the fall-which is fantastic. I have a "break" every morning at 10:30 and then my kids have gym at the end of the day! Then we went over subject by subject on what things are staying the "same" and which stuff is "new". It was sort of overwhelming and I kind of in some ways feel like a new teacher but I am excited. I love to read, plan and create lessons so am excited to start to dive back into that - its just a lot! WOW. I also realized i have not TAUGHT in my classroom since thanksgiving! That is insnane. Besides the two weeks of subbing in may I haven't taught since then. So... now I will begin meetings with the district to go back, start planning things and then setting up the classroom!! Here we go... or at least we will try!

tired.

originally written May 28

I feel like I don't have anything to say. I just got out of being in the hospital for four days because of my Addison's Disease, and prior to that was in the ER on Wednesday bc of horrible chest pain and nausea.  I feel like the PEs have really thrown my health, which was getting stable, and ME out of whack. I feel as though I want to throw in the bag and scream- i quit! I am tired of all this. Tired of RA. Tired of Sjogrens. Tired of AI. Tired of ALL the pills I swallow, shots I get. Tired of lab tests and needles. I am tired of it and don't have it in me. But then... God throws great friends my way who just show up in your hospital room, sisters who send great text messages, you get shaved lemon ice when you are nauseous, friends & cousins visit to say hi and their off spring SHOWER You with smiles, hugs and kisses, your mom listens to you cry your eyes out at 2:00am in the morning aaaaaaaaand you say to yourself "ok, one more day, I can do this one more day" but, one day turns into another, then a week passes by etc.  Ugh.

Cardiology Appointment

This afternoon I saw Dr.P for my cardiology appointment. We love Dr P. he is so nice, calm and really takes his times with his patients. Today, was just like other appointments with him. THey did all my testing then Dr P spent about 30min with me going over my results and medication.

First of all the nurse who did my testing I dont think really knew what she was doing, I had the little heart sticky things put on and pulled off three different times- not cool!! She also couldnt find my pulse and took my blood pressure 3x. Then when Dr P came in he had to redo the EKG that was done (i get one every cardiology appointment). So, it was a little strange at first.  

The Heart... needs more exercise and to get stronger :(  He is a little worried about it and is really want me to go swimming or do the elyplicatal on top of working at least 2x a week. He understands I had no control over the weight and with my horrible joints it makes things difficult. So, 2x  is manageable but still a lot seeing as though I come home from work and can barely walk. But, once I get to the Sports Center I think I will be ok. He then had to explain to me how my heart is not "normal" because of the inflammation, the orthostatic hypotension and tachycardia, so I am at a higher risk for a heart attack and stroke - Ive known this, but when you hear it all over again its not cool. So Dr P had to explain to me which symptoms I can ignore and which ones I shouldn't.

RA and the heart. Anytime I go into a flare, like two weeks ago I need to seem after I get ASAP becuase they want to start monitoring my heart flares and inflammation of the heart more closely. 

AI and the heart. This is the bigger issue. I have the orthostatic hypotension because of AI. It is being managed through medicine, but he is NOT pleased where we are with the things in terms of the heart. I still have really big blood pressure changes when you lay me down then when I stand up. Being on the medicine I am it should not being changing that much, so we did a lot of talking about how I need to really be careful with this and not ignore my symptoms when I feel dizzy or lightheaded. I also need to be much stricter on when I am taking my heart medicine. Its hard becsuse I have to take three times a day and they are at unique times so I often forget a dose- i know its not good but I am so much medicine it is hard at times to keep it straight. 

So, overall it was a  "good" appointment, its just never fun to hear how your heart is not normal and how you are at high risks for some not very fun things. I am thankful for good doctors and medicine that are helping me.

Sunday NIght

I know most people, when they think of Sunday NIght they think of football... me not so much. Poor Bears lost tonight. Especially after having just spent four days in the hospital. Sunday nights are usually "ughhh nights" where I have to gear up to head into another week, I review my lesson plans, make sure things are graded and look over the calendar at what the week may hold.

Tonight was just like past sunday nights where I did all of that, only I had two friends come over and we just chilled for like an hour or so. I did no grading or work, they didn't do their school work, we all just chilled. It was nice.

I have mixed emotions heading into this week. It was a strange week last week, and another reminder to me of what my REAL, reality is- I am sick with a disease that has no course of action and no way of planning when it will attack, makes life interesting. Also, how much do I tell people? This is my reality, but who wants to constantly hear how much pain someone is in? or the fact that you joints hurt with EVERY SINGLE MOVEMENT YOU MAKE? Or the fact you were back in the hospital? I am planning on going into work tomorrow. I feel "fine" with the exception of gutch wrenching pain in my joints - especially my hips, elbows and feet but thats because they are still flaring from this week. My ears/head feel better each day and it helps that i started a new medication to help drain the ears. I am all planned and ready for the week and have some things planned with my kids, so that is exciting. I have no "extra" things that will keep me at work in terms of meetings and what not so that i nice. I will go teach and leave. So, I will take it one day a time and see how things go. THankfully I have some great people who really care about me at work and are great friends.

Follow Ups: I will follow up with my PCP in a week for my ear infection, call orthopedics about fluid in my knee and talk to Rheumatology and Endocrinology in a week for a follow up as well, since I just saw them. I was suppose to see cardiology on thursday for testing and follow up So, no i will also have to reschedule all of that. I swear, being sick takes up just as much time as teaching does! 

Well... hope everyone has a great sunday nights rest and heads into the new week all ready to go!!

Rheumatology

This morning I saw my Rheumy... It was one of those appointments where I left and wasn't sure if I should be happy, sad, mad ect. I was happy to hear my blood work and inflammation markers were "good" NOT happy to hear how hard work is on my body. We took some new baseline measurements of joints. We also can not wait for the new year so I can start OT again for my poor beat up hands!

We are also pleased medication wise how things are YET are curious about a new drug that the FDA approved here in the states called Actemra. It's been used in Europe & Japan and has had lots of positive feedback from patients especially patients with Stills Disease. So, I'm doing some more looking into it and my older brother is as well. Helps having doctors in the family. Actemra is an infusion, not a shot so... Hey... We've don't self injection pen shots, prefilled shots, and ones that I fill WHY not try this? My doctor is just curious to see if I could benefit even more on actemra then being on Kineret.

Soo we shall see what lies ahead.


And who doesn't like snuggly sleeping French Bulldogs?