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

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

knees

Lately my knees are giving me TONS of trouble and it is so frustrating. Norma (my right, replaced knee) has given me NO problem until this latest RA flare. Ever since this latest hospital stay my knees are AWFUL. I can barely walk. They swell. Get Stiff. Lock. What makes me nervous is that Norma has never bothered me until lately and I can tell by how it feels that something is not right. My Left knee we got no where in terms of helping the MCL tear due to all the damage RA has done to the knee. I have been going to physical and we have been trying to strengthen around the knees and they help with pain as well. I am seeing my orthopedic surgeon on Monday to talk about knees and what needs to be done. It is so frustrating. 

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 

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.

Sore

Well physical an occupational therapy are hard! Especially physical therapy. We are working in aligning & strengthening my hips, all sorts of crap with my knee and then stuff with my ankles. I know it is all to help me - keep things in correct alignment and strengthening joints but it is very tiring and makes me very sore. Three body parts is a lot! Also, things are going well but pain is different. My bones and joints hurt - its a more direct pain because inflammation is down, which is good! So, this week has been a very tiring and SORE couple past days.

This is the stim/ultrasound machine. It was hooked up as stim to my knee and my therapist used ultrasound on my feet and I hear on my hips.