ok, ok, heres the deal

OK, OK, heres the deal... 

Ive been down, depressed, blue, feeling sorry for myself and frustrated with life.

Ive been angry and mad.

 I miss teaching and all my friends there.

These past couple of months have been hard and draining.

 But I am trying.

OR at least I think I am trying.

These past few weeks I have REALLY been trying. 

I want to enjoy life. 

I want to like who I am.

 I want to feel as healthy as I can. 

I want to feel creative and artistic again. 

I want to find Mandy and be Mandy. 

Im sick of being sick.

I despise Rheumatoid Arthritis.

I hate Addison's Disease.

I am worn out form the constant "other Issues."

So, here we go... 

Im not going to give up...

I am going to continue on

One

foot

in 

front

of 

the

other.

Here's whats been accomplished this past few weeks to help make some changes in my life...

- I took down the little gate to my front yard so I am forced to take my dogs outside for walks.

- joined a Arthritis & Fibromyalgia Water Class twice a week

- I got my parents old tandem bike totally fixed and tuned up and am having friends go for rides with me

- I signed up for the Arthritis Walk and my goal is to walk the One mile.

- Going to Occupational Therapy and really working on my hand recovery

Done!

All my disability paperwork with Teachers Retirement System is all DONE! I will start getting checks once month at the end of November.

Left foot & sewing!

Well, yesterday I went and saw Dr. A for my left foot results from MRI. For the last two weeks I've been in a big black boot and things just seem to be staying stagnant. The MRI shows that I have "extreme stress reaction on meterarsal number three" meaning I have a horrible stress fracture, dr a said would almost be better if it was just a regular break. Ugh. So, because the location is so strange right in middle of foot that it need to be stabilized, protect it and I need to be off it as much as possible. He said we are looking at a two month minimum recovery. Ugh. It turns out a cast is the better option for a few weeks Sooo I was put in short leg walking cast and will go back in three weeks. I wanted purple but they were out so i went blue. Then "Big M" Dr.As nurse practitioner wanted to add more material to the cast so we two toned and did orange, after all it is football season soooo LETS GO BEARS! Sandra came over and made my toes look all pretty too.The other thing the MRI showed was the damage that has been done to certain bones in my foot, it's not as bad as we originally thought which is nice. (I put a picture of a foot to show you) I will see Dr A right before thanksgiving.

Today, I went to my friend Debbie's house. I love Debbie she is such a good person and full of so much love and compassion. She is a great seamstress and had offered to teach me to sew! Today was lesson number one! She showed me the machine and we did basics, sewing a straight line, sewing on a curve, back stitching, top stitching, turning things inside out and how I iron things. I ended up making a headband! Now, we were just using scrap fabric and used what was around which today we used duck cloth and it was nice and stiff and "flowed" easily among the machine which was nice. It was a great first lesson and I can't wait for more! Debbie then made a wonderful lunch for us and then she sewed my jeans because they waist bands got too big and needed to be taken in. I'm looking forward to sewing lesson and lunch next week!

Its hit me

So, it has been one month since I resigned and its finally catching up with me... and its hard. My new reality is slowly sinking in more and more that I am DONE teaching full time in a classroom with 20 something kids - its hard, its strange, its weird and makes me sad. I miss seeing my friends at work. I miss lesson planning and creating things...but mainly I miss the hustle and bustle of all the kids, the laughter of the kids, the learning that happens with the kids... I miss it. But I know resigning was the right thing. My poor body is fighting so hard and I need to take care of it and help it as much as possible. I have moments where I don't want to get of bed because I don't see the point, or moments where I just want to cry because I am so sad. I get so mad and frustrated at the diseases I have and how much they have taken over and ruined parts of my life. Then I remember things will be ok. I am ok and my needs will be taken care of.

"So don't worry about tomorrow, for tomorrow will bring its own worries. Today's trouble is enough for today." Matthew 6:34

 I am still waiting to hear from TRS on the status of my disability papers but at this point am still waiting, which is hard.

Random Review: Sunday Seven

1. I made some new headbands!

2.  All my disability paper work came and I have started the process of filling it all out and getting it the people that it needs to go to. It is a LOT of work.

3. The Weather lately has been SOOO wonderful I can't stand it!! It is so nice to be able to go outside and enjoy it. The leaves all starting to change colors and things look beautiful.

4. My class room is all packed up and things are home here in my house. So I need to begin to unpack it and organize all the stuff.

5. I had one of the BEST Carmel apples ever with my sister on Thursday from a place downtown called Grahams - seriously the best I have had.

6. Friday was crazy! I went to coumadin clinic and they canceled our appointment upon arrival, turns out the nurse Barb died that morning very suddenly and in the office - horrible! So Sad. Then we went to the NEW infusion center in and it is SO nice. Chairs are nicer, more room for people who come with you its beautiful only down fall no windows. Well, i got poked TEN times for my IV and they could NOT get it. So i was sent to the other infusion center. In between centers I drank three bottles of water and rubbed my arms and they got the IV in ok. The infusion then went how it typically goes and I feel like i typically do- yucky.

7. I had acuputunure on saturday and really helped my headache adn lowered my aches and pains.

Resigning

It has been a hard past two weeks full of lots of different emotion & feelings... This is part of an email I wrote to my family that explains things....

Lets start with a few positives... WE LOVE ACTEMRA INFUSIONS!! It truly is my miracle drug! I have never felt better in terms of the Stils/RA, even though the day before day of after-we take crapy three days for all the good ones! Because Actemra has been helping so much, I have been off predisone since the end of June! I am also no longer on Cyclosporine (the real nasty stinky medicine) WOO HOO

Due to the sleep studies we found out unfortunately that I have sleep apnea and was having heart and lung issues during my sleep... WELP with the CPAP machine my numbers WENT PERFECT! So, my new night time pal is my breathing machine, I sleep THROUGH THE NIGHT!!! and FEEL RESTED! wow

My heart is the best it has been in over a year!! 

my vitamin D deficiency is now starting to improve.

I have my energy and i totally feel back to "mandy"

Ive been able to got to WSC and SWIM! 

The Arthritis Jingle Run has a location at Cantigy!

I got a new hair cut!

The weather and I love each other- which means I am outside more!!

I took a leap of faith and joined a random small group at church this past week and really like the people in it and think it will be a good support and positive thing.

Woo hoo positives, we LOVE those. Well, because I was feeling SO good I started back at work. Loved setting up my classroom and getting back to what i LOVE. I have a awesome bunch of kids this year and like always the Arbor View staff is great. First two weeks of school went off with a bang and Ms Dominguez was back! THEN... I had my infusion... then my addisons went crazy and I had two back to back ER visits then hospitalized for three days. HAd a good couple of days then was back in the ER and out of work for three... AS you can imagine, not what I expected... these events has led me to some very, very hard conversations with my doctors. AS it turns out my body can not handle the stress of full time employment, especially the stress and demands of teaching... my doctors and I are all in full agreement that the time has come for me to go disability and leave work. My doctors have all been so impressed that I lasted this long and were sort of just waiting for me to wave the white surrender flag but have been cheering me on while I gave it a try. They all are being wonderful and super supportive like always- especially dealing with a sobbing crying mandy in their office. I have always said I would work until I was told it was harming my body or making things worse for me and that is the case. I felt great in august and want to continue to get stronger and healthier and working is getting in the way. A piece of my heart is shattered - I am leaving what I have dreamed of being, a teacher in classroom and it is SO hard. There has been lots of tears about this loss but I am thankful that I was able to finish my masters in special ed, for that has PLENTY of more options for me to eventually work part time and I can tutor. (loved doing the this summer) I know God has a perfect plan and have learned to fully trust this and rely on His attributes at times like these... but it is hard... I am mad, I am sad, frustrated and scared - what am I going to do? I am nervous about my finical needs and completely stressed about my insurance needs. HOWEVER, I look back over these past three years and can CLEARLY see evidence how God has provided for me, watched over me and really taken care of me So I am doing my best to again rely on him with these issues as well. There is only ONE mandy and I want to take care of her and get her as healthy as we can.?....

HEALTH UPDATES:

Due to methotrexate and actemra my liver enzymes have continued to climb and are starting to become very worrisome because of this I have immediately stopped taking methotrexate as of this past week. I will continue monthly infusions of Actemra.

My cholesterol is VERY high. This is strictly from Actemra. This past month it started to level out. We are not starting any medicine for this yet and will run more tests in three months, if levels has risen then I will start meds.

My LEFT knee. My MCL has not made many improvements and there is more evidence of arthritic changes in my knee making it for sure that I need another NEW knee.  I was given a cortisone injection today to help, will finish off PT, wear a brace or tape.

I have been under watch for the past two years for diabetes... I am .02 away from having full blown diabetes and am considered prediabitc. NOT COOL.

My hands hurt ALL the time because inflammation is down (yay!) i have certain fingers that are almost bone on bone. At night my thumbs dislocate and I can barely use them. I need surgery.

Blood Thinners. I am still on them and HATE IT. My INR levels are so whacky. I can NOT Have any surgery until I am off them -no budging on this. I go back to hematology in november.

I recently have been experiencing strange and bad foot pain on my left foot. This is the foot I had my nerve biopsy on last august so I have no feeling to part of it. So to feel pain has been weird. Sure enough turns out that I have a stress fracture, will need to wear a boot for three weeks.

I am working with my physical therapists to make a work out plan. I need to try to loose weight and become as active as much as a I can and being active in a way thatstrengths my body not that stresses and harms. I am learning new exercises and have been given FULL RANGE to use the warm therapy pool as often and much as I can.  SO anyone who needs a poky buddy let me know! 

Once we have been given the "ok" from hematology for surgery I will have my right hand done first - this is like a 3-6month thingy.

 HOW AM I?

 I again am a emotional dollar coaster. This is very hard and very life changing, sort of like getting the diagnosis. I am at complete peace with decision, but that does not make this any easier. I am So thankful for my doctors yet again and their guidance and support. I LOVED how I felt in August and was encouraged and excited to start to begin the track of becoming healthier and this is it. I literally am going hour by hour at work for it so so hard to be there and look these kids and know I am leaving. To walk down the halls, see my coworkers and think I am leaving. I holding it together and being strong for kids. I am SO confused at times on why things happen to me and I continue to battle it out with God at times but I KNOW He is GOOD. HE IS FAITHFUL. HE LOVES ME. I can't really put into words how I feel but it is a LOT. I can NOT do this alone and will need your help, especially these next two weeks of paper work, meetings, infusion and leaving the classroom - so be on the look out! 

So please... keep me in your prayers. Thank you for taking the time to read this.

Much love

Mandy

TODAY was my last day of teaching. It's been hard. I also got all my disability paperwork to start to fill out-it is overwhelming but I am going one day at a time. It does feel better now that this is out in the open 

out again

Well, I am out again from work- so frustrating. I was horribly, I mean HORRIBLY nauseous on Monday. Dry heaved on the way to work and felt like I was going to puke all day. I came home on monday and laid on my couch until 7, went to physical therapy and came home and went to bed. Around 10:30pm... the throwing up started... and continued ALL night and unti about 8:30am. I called the doctor and they said I needed to go to ER to get IV meds. My mom took me... I was mess. My sister in law stayed at my house, cleaned my bedroom, changed my sheets and took care of the dogs. Luckily, the ER doctor we saw I have seen before and she "knew me." I was given fluids and about six different medications - steroids, meds for stomach pain, nausea and acid reducers... we were in the ER most of the day, but soon after I got the meds in me I started to feel MUCH better. I am home again today and feel even better and will be out again tomorrow. SO frustrating. It has me really thinking about things and work. No fun. I am trying SO hard to take care of me and do whats best for me, I also want what is best for my students as well. Anyway, apparently my stomach wasn't emptying right and thats why I kept puking. So I am on some medicine now that helps my stomach empty correctly - so strange.

Classroom!

Today my classroom got finished!! I'm so excited to greet my 20 new faces on Wednesday!

Sore at night

Well, this week was a eventful week! But more so I am impressed with how my RA was. Energy wise I have felt great! I have been going to bed a little later than I would like, but that is bc the Olympics don't end until 11:00pm. But I have been in my bed by like 11:15-11:30ish each night. Some nights I have slept through the night others up once. Then I have been up around 7:00-7:20am. Each day I have been doing different things, setting up classroom, tutoring, going to zoo...
And I make it through the day just fine. No crazy fatigue. No feeling like I'm dragging myself around- I feel pretty good. However, what has gotten me every evening and night is how sore I am. My joint hurt at night. Norma gets stiff. My hands hurt and thumbs trigger and have been dislocating. My feet and ankle hurt. Things are super sore. Ugh. No fun. But it's the nature of the beast. I just wonder if this is what the school days will look like... Feeling good but hurting at night.

Work day! And PT

For the past three years my sisters kids have come in to my classroom for a work day with aunt Mandy! This year she was not able to come and her oldest was at camp. So, I started off hitting up Dunkin Donuts for the kids to get them excited to come help. And help they did! They sorted all my student text books, passed out te textbooks and put them in students desks, we hung things on wall, put up clothes line and sweated cause there was no air! Sooo naturally after they worked I let them do some things you never get to do in school - race on rolly chairs! (if I can figure a way to upload video I will) was a lot of fun spending time with them and we got LOTS done!

I had PT today - Which is great to move and sweat but HARD with a left torn MCL, right sprained ankle and swollen knee. We did some good exercises I can do at home. I did the "nustep" for seven minutes! I was stretched, messaged and then ended with ice and stim- it was hard but good.

It's been a sore and tired evening! I think I'll sleep well tonight.

Here we go!

Well today I went back into my classroom today with my good friend Jessie. I was such a nervous wreck on the ride there... What if I can't do this? I haven't seen these people in a while! My leg is purple and black. What if I'm not excited about the school year? How will my body be? You can ask Jess I was not myself. Well, turns out it was a GREAT day in my room. We got all my boxes unpacked. She did all my bulletin board paper and borders AN hung up posters! I got my teacher area figured out. We got my "reading island" set up- WE GOT SO MUCH DONE!! I was so happy. I also saw my principal which was nice and a few other people. Turns out no need to fret. Afterwards I took Jessie to lunch to say thanks.
I then spent the afternoon printing things off for my classroom and finishing some projects. This evening Kait & Sandra helped me make some signs for my front bulletin board and stuff for my classroom. They did lots of cutting and gluing for me!
So here we go! Time to get ready to go back to school. Room 210 is going to be rocking!

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!

Subbing - top 10

This post was originally written May 21.

Well, for the past week I have been subbing - it has been tiring and different but I have LOVED it. It was great to go back to work and see all my coworkers and the KIDS! Man, have I missed being in a school and all the children and just the school atmosphere. I have been with the younger kids a lot which surprises everyone since I usually am with the "big 5th graders". I was in kindergarten three times, the library, 4th grade and preschool. WOW, its a total different type of energy in kindergarten and preschool but so fun, and VERY LITTLE! I felt like a giant. My cast was like as tall as their little chairs. You also SING a lot in the younger grades a lot! You sing when you come in, when you sit at circle time, wash your hands ect...  They also are NOT afraid to tell you if you do something different or wrong. All the little ones were very very amused by my cast. It also turns out teaching in a cast is really no fun at all! There are tons of fun little stories I could write about instead Im going to write the top 10 things I was told by kindergartners or preschoolers. 

1. "you are NOT Mrs. Williams!" then little kid burst into tears bc I seemed scary

2. "You're like as tall as Monkey!" found out he was at the Zoo the day before

3. "Ms. D your eyes sparkle and you smell like ice cream"

4. 3yr old preschooler who is rubbing my cast looks at me... "Whats inside?!"

5. "umm... Ms D you sang that wrong! Do you know what you're doing?"

6. I accidently stepped on a preschooler with my cast, I said I was sorry his response "eh!? no worries my brothers kick me sometimes, Im ok"

7. "Are you magical?" Me: no, why? "becuase you know ALL our songs"

8. looking at my cast, "So, its like a big boo boo?" me: yes it is "did your mommy kiss it then?"
9. "We have bones in our leg! cool"
10. walking in the hall with kindergarten. the fifth grade is coming the other direction and its my class. A little kindergartner yells out "HA HA we have your teacher and you don't" I laughed. my 5th graders didnt know what to say.

It goes public: medical leave #2

Well tomorrow at work my news is going public so I am now on here... Im taking another medical leave. Here is what I wrote in an email to family about it....
"I am not going to be returning to work for at least two months in order to start some new treatments (meaning as of today I am on another "medical leave" until February 1, 2012). Within the next week I will be starting Actemra Infusions. Actemra is another form of biologic, like Kineret, Enerbel and Humira, only instead of injection it is given though an IV. (more on actrema click here). My doctors and I have dicussed this form of treatment option over the past year, and quite often since the summer. We just feel as though now is the time to try to it. Before the infusion I will need some extra blood work done for baseline measurements and four days before the actual infusion I will stop my Kineret injections. There has been more joint "deviations" and damages that are present with my fingers, hands, wrists and feet. Starting again in January i will go back to occuptional therapy and to have ALL my splints readjusted, and I will also meet with a hand specialist/surgeon as well.

Why at least two months? With Actemra is given every month -meaning the medicine is in me that long as well. UNLIKE Kineret where it is every day. IF Actemra fails and does nothing for me, that means I have to go the rest of the month WITHOUT taking any other biologic to help with RA -not cool and a risk im taking. If try 1 fails then at month 2 we will UP the dosage to a higher amount and we will see what happens. BUT the hope is NEW MEDICINE will help!!!!"

It has been so hard not to be at work because I really love and enjoy it- however I need to do this. This week has also been a slow rising hell. I stopped Kineret and each day my body misses and misses my RA meds. Tomorrow is the infusion and I am nervous/anxious about it. I just hate being miserable like I am now and hate not knowing what to expect with all of this. Sooo.... Here we go...

The next seven days

These next seven days Tuesday to Tuesday are crazy busy for me. So much so I emailed a few friends and family to help me out. I am going to get some help with dogs, meals, laundry and cleaning. I have three doctors appointments and parent teacher conferences, which gives MD some REALLY long work days since I have 23 students each with a 15mib conference. So, I decided to do some things like make my "snack" bags for work, lay out work clothes ect. I was so actually excited tonight when I was cutting up my veggies because unused my new peeler from my occupational therapy friends. It worked great and was soo easy on my fingers!

First Quarter- done !

I wanted to post last week... But didn't. I can NOT believe that I made it through the first quarter of the school year, that I am done with report cards and gearing up for conferences. I think it was an awesome first quarter and thought it share some highlights...
- ALL the help setting up my room and getting ready for the year
- first day of school and all the welcome backs and yay Ms Dominguez is here
- my 22 (as of last week 23) amazing students
- being with my teaching partner for another year and all her help and support she gives not to mention how much fun we have!
- surviving curriculum night and meeting all the parents
- going to Septemberfest and watching my friends and boss get dunked in a dunk tank
- planning, organizing and Going on outdoor Ed in wisconsin!!
- getting the Nicor/ComEd grant
- our science unit on the Brain! and having Nurse Jill come in from CDH
- singing and rapping multiplication facts with my kids
- out fun little readers theater plays
- our halloween party :)
Obviously there is TONS more buy those are just some highlights. It has been a great past few months in room 210 and 2nd Quarter is off and rolling nicely as well. I am so glad I love and enjoy my work!


I missed work last week for just a day and half because of a doctors appointment and then evil evil evil pain and fatigue. When I got to school my kids wrote this note for me. I have a great class!

Halloween

Today was a fun day at work, but ended horrid! I got in such horrible pain I sat in my car in my garage for 30min until my friend came. I thought I'd share some pictures of my girls and students. I started the day out with giving everyone vampire teeth to wear all day it was cute and they loved it. My room parents threw a fun and low key party too!

Soo fun that my sister in law brought the twins for the parade an party too!

Olive and Darlas costumes aren't what the originally planned but they are cute!

Fun

Today was such a fun day at work. Glad I am teaching, even though my body hates it. We did readers theater, I played the part of the grasshopper because the little girl was absent. My kids did such a good job! It was just a fun day.