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
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