RA flare

This weekend I need up in CDH on Sunday night bc my RA flared up. It was not cool. So much pain. When I'm in CDH for pain I get IV pain meds and my favorite blue bunny sherbet!

I only eat this sherbet when I'm in the hospital. Weird I know but it's like a special treat. While I was also in the hospital marijuana became legal to be sold in Illinois for 22 different health conditions and I qualify for it - I got a lot of emails and text forms friends that day.

It was a short stay in the hospital Sunday to Tuesday I just needed a break from the intense pai. From my RA flaring, I am doing much better now.

October ??

What happened to October??

I can't believe that it is November 1… WOW. Well, welcome november I hope you are good to me. October turned into a month of mandy getting more help for herself and taking time to work on me. So, thats what Ive been doing. Working on me and trying to get out of my depressive funk. It also included two not so fun hospital stays at CDH. One was for a pretty bad RA flare up, I got discharged and four days later ended back in the hospital for a Addison's flare up. NOT COOL. In other news, I now no longer need to go to wound care because my knee i practically closed up and healing how it should be - praise God, its only been four months ya know :) I have been enjoying all the lovely fall colors (my favorite) and just taking things one day a time. Hope everyone is doing well. 

been awhile

I just updated my carepage... figured id "cheat" and use it to update the blog too... I should probably update this more often too. I have som funny things Ive seen

I know it has been awhile since the page has been update and lots of you have been so wonderfully been asking how I have been doing, asking what’s been going on, how can you pray for me ect… and well its really hard and complicated to keep a care page updated when you have chronic illness because there is ALWAYS something, and I mean ALWAYS something whether its thrush, ear infection or having stress fractures in your feet. It also gets tiring writing about things because it’s a constant reminder to me of how sick I really am, and well that’s no fun. But here I am updating the page because well there are things to update you all on and I appreciate all the wonderful support that you give me – and well things are rough now and we could use an extra dose of lovin & prayers these days J

OK… in attempt to catch you up to speed since JULY yikes! In bullet form here we go on the major things, especially things we have been following on the page.

-       Fall has been rough… first time not going back to school whether as a student or a teacher.  I spent two weeks in CDH for an RA Flare. My fixed income changed because of disability status and my insurance changed. EEK.

-       Left knee with the GIANT wound -After four and half months, it is finally all closed. YAY. What a crazy adventure that was. We are now just working on try to work on scar healing, getting it to go from purple to pink - so I can have surgery on the knee. I DO need a total knee on this knee but CAN NOT have surgery until the scar on the knee is PINK because of how fine and fragile the skin is on the knee, until then we can only do pain management – boo.

-       Right Knee- Norma. We found out that when I fell I cracked the knee cap-hence why I have been in so much pain. It has since healed there is nothing to do- I just live with how it is. I injured my ITband pretty bad so we are working on that in PT now again. We cannot and will not do surgery on Norma because of how complicated my body is.

-       Been having some real bad GI problems on and off since July, got cDiff in summer so now infections are harder to treat in me and will soon be having some GI testing done over next week

-       RA flare really messed with both feet and have been in PT for both of them

-       Have had multiple bad ear infections in and recently learned that my TMJ is now being effected by RA (if you knew me in high school you know this is NOT cool)

-       Diabetes has been a roller coaster since RA flare but slowly being back on track. Got really sick to do one medication and had to go off it and trying to figure out new treatment plan

-       Addisions is still up and down but lately it is “stable” we are jus trying to figure out how taper down off the prednisone, and it of course does not go well

-       Sojgrens has been acting up like it usually does in the fall-dry dyr skin, cotton mouth, bloody noses ect.

Other big news… With everything going on we thought it would be good to get some fresh eyes to look at things. My insurance does not cover out of state so I cannot go to Mayo, Hopkins or Cleveland Clinic. SOOO I currently am in the process of getting things rolling to be seen at the University of Chicago- not sure what all this will entail we are still working out ALL SORTS OF DETAILS, we just know that’s where I am going. They have my information and my primary cares info and we are working with a friendly man named, Lloyd. I am so thankful for my brother and his wife  and so THANKFUL for them -its getting us places thereJ They will get my file, I will see specialists, probably have some test done ect and we will see what they have to offer in terms of my treatment. This does cause me quite some stress & anxiety but I know the end result is  hopefully a good thing.

Currently… we are working on figuring out GI things & GI testing… going to PT for both feet and my ITband for right knee, Norma… looking into TMJ issues AGAIN… figuring out new insurance… working on finding out governmental assistance and new finance situation… and getting things ready for U of C…

just trying to make through each day! LOTS OF CHANGES THIS FALL, and they haven’t been the most fun, so please keep the prayers coming my way, I appreciate them. I will keep you posted as things start to progess with U of C!

Thanks so much for everything!
Lots of love

Mandy

"Whatever I have, wherever I am, I can make it through ANYTHING in the One who makes me who I am" Philippians 4:13

Home

I hope everyone had a wonderful Christmas! I unfortunately spent it in the hospital but am home now- came home Wednesday morning.

Lead

Ever since Sunday my body has had a slow decline in function and increase in pain. My arms and legs have felt so heavy it's like they are filled with lead. It hurts to move them, they constantly ache and literally are dragging me down. I also have not slept well for two days straight was up all night Because things felt so icky. It has come to the point where I called Dr Rhew for some help bc my medicine I bad at home was not cutting it.we thinkin sorta crashed from the long day Saturday and the whacky weather we had!! It was 66, 68 and wet and sorta balmy, not greatest fr joints. So, there has been lots of ice, sleeping on couch with doggies and using the H-Wave machine. I am hoping te meds continue to help me beat this little flare up. At least I was able to stay out of hospital!

Flare up!

Well the past two weeks have caught up with me and my body crashed! Currently I am back at the lovely CDH in horrible pain... My RA has flared up, nerve pain is back, Addison's acted up and have a dual ear infection. My mom took me into the ER around 10:00pm and I was admitted around 4:30am. I'm hooked up pain drip, IV fluids, ice packs ect... Trying to manage nerve pain, decrease overall pain and treat infections. Addison's was pretty much treated and back on track from ER treatments. Here's hoping for a fast turn around in pain. Thankful for the visitors and mom.

The good, the bad & the ugly

The Good: we know that my body does well on Kineret, my labs showed stable organs and no INCREASE to my inflammation. I've had fun with friends.

The Bad: this week has been so hard. So hard. Saw doctor again Tuesday and we switched meds around an I am back on prednisone for a taper until my next infusion the first week in January, got some heavy pain meds to try to help with hellish pain I'm in.

The Ugly: my hair is really falling out more. I can't drive while on this much meds and hands hurt too much. I have horrid moth sores again from medicine. My fevers are back- 101.3-102 at night during day between 99 and 101. I'm
Constantly super hot and sweaty or hot with chills. My rash is back.My joints kills....

I think it's safe to say... We need a MUCH stronger dose at my next infusion! Here's hoping I can "make" it until then.

A lovely picture of monday and my hair after running my fingers through it-comes out in clumps! Man we love Stills Disease/RA.

Sheesh

I have been pretty miserable these past few days - I mean miserable.

However, I got my new glasses! And I got new dishes! They both really make me happy despite how crappy I feel.

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!!

Spacious room

So, today I had some visitors and everyone's completely shocked by how nice and big the rooms are now at CDH! Here are a few pictures of us enjoying the room and great view
from window. It's soo nice and never felt crowded or overwhelming like past hospital stays. Yea family.

A Dual Flare

Well... What a strange week. Talk about an adventure! I woke yesterday in pain - normal. Not normal that it was the majority of my joints! Put my feet on the ground and starting puking. Got super dizzy and knew- no work today. Make a looong strange short. I ended up seeing my PCP in early afternoon bc I couldn't tell if it was my RA, the adrenal insfuffincy or me getting sick. I was tested for flu and came back negative. We thought let's see how next 24hrs go but we both were dreading and thinking it was the start of a flare. I went home. Crawled into bed and slept more... When I woke my pain about tripled and I was nauseous and dizzy again. Did what I could at home to manage things and it just kept getting worse and worse. Soooo I knew I needed to go to hospital. Jen & Matt were the first to answer their phone so Jen took me. There will be posting about the nurse character we met at another time :) but Nurse Greg was a treat! I ended up being admitted and will most likely go home Friday afternoon. But I am in a dual flare. The Addisons Disease and RA-- NOT FUN at all!!! The good thing is I got to the ER in time and had a good doctor in ER that we were able to jump on top of RA from having my organs get inflamed. So, I'm back at CDH - which is more like a hotel because Of new renovations. We are managing joint pain, and adrenal insfuffincy issues. I'm very uncomfortable and in lots of pain... But hanging in there.

Here is a picture of new room and bathroom! Each room also has flatscreen tv!