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

Left knee

Today I went and saw orthopedics for my left knee. We talked about the arthritic changes in my knee over these past months, torn MCL and just other crap that goes with Kees and RA. I know I need a new knee but really don't have it in me to do another total knee any time soon. Due to wear most of the damage is the knee braces don't really help. I just need new parts of my knee, need to strengthen te muscles around the knee and become more active. To help we decide to do another round of what I call "jelly injections." It's a series of three REAlLY large injections that go right under knee cap that help "lube" up the joint and make some cushion in the joint since its bone on bone in parts and has changes. I had a series done in July. They are to help with the function of joint and hopefully take away some pain. I was NOT expecting to have these injections today so went to appointment by myself and Wowsa I forgot how BIG and PAINFUL the injections are - ouch ouch ill go back the next two Thursdays for another injection and will be having a buddy come along for sure! My knee hurts tonight - it's sore and feels tight, which is normal. So, let's hear it for Orthovisc Injections! We want some relief and want to out surgery off.

thrush... AGAIN

This is after "cleaning" my mouth. NASTY.

Well, due my week in the hospital I was put on prednisone to help with my RA flare. As we all know we have an extreme LOVE/HATE relationship with predinsone. Due to being on them... I got thrush again and its nasty. My mouth is coated in white crap and hurts. Things taste funny. My lips get dry and icky. SO not cool. I am starting an antibiotic soon and have been using the lozenges again but man=we hate thrush!

Oral Thrush: Web MD

Mayo Clinic Oral Thrush

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 

Blood thinners

Back in May I had pulmonary emboli (blood clots) in both lungs and since then I have been on Coumadin a blood thinner. You know what? I HATE this medication. It's horrible. What makes it horrible is I have to go to the clinic and have my INR levels checked (this is a level they check in your blood that determines if your blood is too thick or too thin) well, I shouldnt be surprised but my INR level will not stay consistent at all! You should be between 2-3. If its lower than 2 than your blood is getting "too thick" higher than 3 means "too thin." there are certain foods rich in vitiam K thatcan effect your INR levels soooooo I'm not suppose to eat those right now(green veggies and leafy veggies). When my levels dip below 2, I need to "cover" myself so I don't get clots, which means I have to do lovenox injections - these shots HURT! The actual needle is small, so it's not the needle, it's the actual medicine that burns so bad after it goes in. You also can "bruise" at injection site... My oh my do you bruise! My stomach looks like a blue, purple and greenish watercolor! And it's soooooo tender. So, I have being on blood thinners! Not to mention you need to let everyone know you are on them in case you get cut or hurt. Blood thinners YOU are not my friend and I'm so thankful I only need to be on it for about a year and not for life.

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.

April

The month of April did not start off too hot and isn't ending to great either. Seeing as now that it is May here are some of the crazy things that happened in April...
- I spent a week in the hospital with the worst pain of my life - no joke, I got shingles, and apparently I have them pretty darn bad. While in the hospital I was give NINE bags of antiviral meds, then spent two more weeks on antibiotics and meds. The awful thing with this is I missed my infusion, so that was delayed for two weeks as well - sucky. So my RA pain started to flare up, which is never any fun and means I was put back on prednisone because well thats all my body can take. The only good thing I could think of was that we know infusions are working because man did I miss it!
- I had my fourth infusion. It went like the other ones, there were no real surprises... however I got this infusion in the afternoon, which was not any fun becuase I was anxious/nervous wreck all morning. Also, my side effects from the infusion kicked in later at night too. So, we have noted no more infusion in the afternoon.
- I am NOT back at work like I had hoped to be. It sucks. To make a bunch of craziness and crap short, I am not going back to work until I can be full time.
- I did another drug challenge with Dr. M with the drug Celebrex. Apparently, there are "two sides" with antinflamatories and this was the other side. Everyone seemed to be hopeful that I would not be allergic to this since I was allergic to Naproxen. WELL, in true Mandy fashion I AM allergic to it, and very allergic to in fact. I got this horrible ALL over body rash, got super duper dizzy and my mouth got all tingly. Jennifer was with me and kept me "cool" as I downed benadrly and prednisone to calm down the reaction. It was nutty. SO, this means NO nsaids for me.
-I have had thrush for THREE weeks!! i dont think there needs to be any other explanation to that.
-my heart has been up and down all month- which too has sucked. We have changed my heart medicaiton around too.
- I have had SOOOOOO much blood work done this month, im surprised my veins still work.
-My liver is under big time watch becuase of enzymes changing from the infusions. If they get too low, I will have to stop Actemra (infusion) and go back on Kineret my daily injections.

As I sit here and remember this past month, it really has been a pretty poo poo month. HOWEVER, with each thing I write down I also remember how my different family members helped here, how my friends came over multiple times or picked me up to get me out of my house, how the little people in my life show up and perfect times and shower me with love... I really do have amazing support with my friends, cousins, and family.. well and my little fur kids. So, I am glad to have made it through April and hoping that May really does bring some nice flowers my way :)

Tuesday... What a day!

Yesterday my sister in law was my clinic buddy... What I thought would be just blood work and hands specialist. However, when I woke up I made a same day appointment with my PCP bc my thrush and back hurt.

Sooo 9:15 I was picked up at away to
Clinic we went... It was nice
To have Jen come along, we haven't spent too much time together in awhile, granted this was for appointments it was ok. The lab was very busy, but they kept things moving and one of my favorite techs was there! So no problems there. After lab, headed to see Dr. H, the othro hand specialist I see.

Jen and I now had the iPad out looking and magazines, I ate my breakfast (had to fast) and waited. Right away my injections for my thumbs were set up - don't think I'll ever get use to see those big cortisone shots! Wowsa. Dr h came in, and I had my list of questions and concerns to go over with him. Jen helped make sure we had a clear understanding and help me stand firm on some things. I really like this doctor, but constantly struggle because I don't fit "the mold" of typical patients he sees with the problems I have - which causes me to stand firm in what I want done. We talked about the two surgeries I am considering and will have one done most likely middle of June. I was given injections in my thumbs and will go back in six weeks .

After that appoinnet Jen and I realized we had some time to kill so we went to a local restaurant named Honey and had like a brunch, Sooo yummy.

Then I went to see my PCP. Which is always fine seeing her. Turns out my thrush is still around, this morning I took another pill for it. Ive been saying my incisions and toes felt funny, turns out they are really infected and aren't healing the greatest. Talked about how to clean them and am starting an antibiotic for them. THEN we talked about this super awful, sensitive back/side pain I'm having. She really examined and looked me over. I had X-rays of back & ribs done, and a urine analysis. Liver, kidneys are ok, no broken bones... She is in agreement with what the after hours doctor thinks- I'm getting shingles. NOT COOL. So then we talked about shingles and the rash I'm to look out for.

It was quite a long day at the clinic!!

However... My day needed up with me going to counseling and then heading to a friends house for dinner with her and kids-- so fantastic!