Broken Foot

Sooo my foot is broken, like totally broken... Not a cool way to start 2016 but oh well. People have asked me today what did I do to break it and my respondents - I don't know! Ever since end of November it was bothering me and I told some people it felt like I was walking on a broken foot. I December I had two sets of X-rays taken two weeks apart from each other and nothing shoes up. Then right after Christmas it was still bothering me and getting worse so we did an MRI... And sure enough I had two broken bones! Because oh the holiday and me getting super sick I didn't get to see the orthopedic foot doctor until today. And he is so nice and was funny. He said he had no idea how I've been walking around and I said I have a high pain tolerance. We believe I had to have banged it on something and bc of my bones being more Brittle bc of osteoporosis that it broke. fun.  I went in today thinking I'd get a boot but he was like absolutely not you need to be casted. In true Mandy fashion I tried bargaining with him but he kept saying nope you need to be casted... So I got a pretty purple cast on for at least the next three weeks! Ugh. Which also means no driving. Double UGH. Soooo I had my friend Sandra do a little cast art like she has in the past... She wrote my favorite HOPE on it, we kept it more simple this time but I love it. Well... Here we go cast- heal broken bones heal.

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.

Vision & hearing

Today I had two appointments one for my hearing and another for my vision. Now, I've been having my hearing tasted over the past few months due to loss from being on an antibiotic for the infection. However it can lead to hearing loss so I stopped it three weeks ago bc of this. My hearing dropped again since my last hearing test, which was two weeks ago. It always makes me chuckle when I get the test done because it reminds me of being in elementary school when yiu got tested at school...raise the hand you hear the beep in, press the button any time you hear a sound ect... Today I was told that I've had so much loss I would benefit from hearing aides, which is sad but true. I have such a hard time lately hearing things in a crowded room, when tv is  on and you try to talk to me, ect... It's frustrating and no fun. I'll go back in a month to do another hearing test and if there is no change in hearing then I'll move into the process of getting them. My second appointment was for my vision. The past few weeks I've noticed that my double vision was coming back, things have been getting blurry and I can't read certain things. So I saw Dr Guay who is my opthamologist- only she is a pediatric opthamologist who specializes in prisms. Because she is pediatric there are all these items on the counter to help her out. 

She stuck a sticker on her nose out of habit and had me look at the birdie on it. then realized what she did and apologized bc it was out of habit that she did that. I said no big deal at all. She also put the lady bug on her shoulder to get me to look at her left and right ear... It was entertaining. Anywho, my newer glasses do not have biofocals or any prisms in it,   (Prisms help with double Vision) so we tested to see if I needed them again. She also tested my vision and eye pressure. Well turns out I need new prescriptions and prisms back. She also wants me to see the retina specialist bc she things the cyst/mole in my right eye may have grown and because I have diabetes need to check things out so I'll do that within the next week or two . Dr Guay cut and stickable prism on my glasses to see how that helps and I'll see her again December 8. It's crazy! I'm frustrated and hope we can get these issues fixed as soon as possible bc it's sort of important to see and hear. 

Treatment Plan

Lots of people have been asking what the new treatment "plan" is for me.  So here it is in a nutshell.
Starting back in July (?) I started getting a dose and half of Actemra, which is the infusion I get for my RA. However, a few days after I would get my infusion I would get sick with my Addisons Disease acting up and would be in ER or the Immediate Care Clinic getting treated for that - not cool. So, After messing with meds for my Addisons and trying different things I now get TWO infusions - one for RA and one for Addisons and they are back to to back. We have even worked out the timing of the infusions so its at the beginning of the week, so  if something were to happen hopefully we would catch it before the weekend so I could stay out of the ER and see my regular doctors. NOW every three weeks on Monday I get an Actemra Infusion for my RA and then on Tuesday I get an infusion of Soludmedrol for my Addisons. We have done this treatment now two times and it has worked wonderfully! and are hoping that it continues to work that way. What also is making these treatment nicer is I now have a  port for which I have all  my infusions go through and I have all my blood draws taken from! It is making my life so much easier and much for pain free! Here is hoping things continue to go smoothly, my next ones are scheduled for October 13 & 14.

My Port Site.
This is how it stays from Monday to Tuesday so they don't have to access the site back to back. It feels very weird walking around like that for a day but I guess it comes with my territory. 

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

Achey...

I need my infusion... Getting so achey and can not sleep. My legs feel like lead and are just throbbing. Ohhhh Monday..please come soon.

Hospital...

Well... I am still here at CDH. I ended up throwing up a few times last night and again this morning. Ugh. They will not let me go home until I keep food in me and the abdominal pain gets better.. My thrush is also not clearing up like it usually does so that stinks. However, my rash is clearing up and looking better and better and is way less itchy. My knee as looked at and things look good there. The donor site also looks good, it just is itchy. We also ran some tests to look at my kidneys and stuff and are waiting for those results. I am tired of being here but the nurses have been great and really helpful and cheerful. I've also had some visitors yesterday and today since I'm not considered contagious anymore. Really hoping the soup and food I've eaten and dinner will stay down. SOOO far I haven't puke since 8am this morning. Here's hoping things stay in me and the night goes well... Thanks for the prayers...

Walking the halls with twins.

Knee & hospital

From CarePage...

On Friday evening I got to remove the giant immobilizer! It was SOO nice to get that thing off, however I took a few steps into my kitchen and got intense pain bc the knee "cracked open" and bleed like crazy for a bit. Was told that could happen and well it did!Those ten days in the immobilizer were way harder than I thought they would be. I only had to be in it for 10 days bc that is how long the skin on the knee needs to "set". I lost a little more of th graft so I'd say about 30% of the graft has taken, the other part of the knee is just open...I get to practice being patient some more bc the other portion of the knee just gets to take time and heal on its own. My thigh, the donor site I was told looks great and is healing just fine. It still hurts but is becoming more bearable each day. I will see orthopedics within the next week to address issues with both knees, was suppose to go Monday but had to cancel bc I was in hospital. I see Dr Sigalove on 11th to get staples taken out of knee and get the yellow mesh covering taken off my donor site. 

Some other adventures... I got thrush yet again thank you antibiotics and steroids. And began treatment on friday for that. Sheesh. Saturday, was my 31 birthday and I had a bit of a car accident, and am praising God I am ok and that no one else was involved. Pretty much i was driving down Geneva Rd, my car smelled really funny and felt funny and all of a sudden it sounded like a cannon being shot, pieces of my car flew in all directions and my tire flew off my car along with the fender! It scared the shit out me. I was able to steer the car over to the side of the road. It was so weird and crazy! The police and I were shocked that the fender, wheel, and other parts didn't hit any other cars and that I didn't hit any other cars! Crazy.  I have not been feeling the greatest all week and I knew it was from the antibiotic I was on for my knee. Well, things took a turn for the worse Saturday evening. From about 11:30pm - 4:00 am I was going to the bathroom about every 20min, and then around 4:00 is when I started to puke and then dry heave. After talking with my sister in law and brother they confirmed what i knew I had to do and that was to to ER. So, around 7:30 my cousin came and picked me up and we headed to CDH. It was SOOO nice in the ER. There was no wait, I got a doctor I've seen before and I got a fantastic nurse! Having Ari and her lil Levi in ER also helped! Well, they got the IV bag going in me and FAST since I was quite dehydrated. Well, I was actually admitted on Sunday morning and was discharged this afternoon (Tuesday). All the doctors were pretty certain I had gotten the bacteria infection called "c diff."  Turns out and praise The Lord I do not have it! Which shocked the doctor as well. However, what was making me so sick was the antibiotic I was on for the knee. So, that was stopped on Sunday. On Sunday and throughout my time in the hospital I complained that my skin was SUPER dry and itched a lot...woke up Monday with a awful rash on my arms, this rash got worse throughout Monday and Tuesday morning I started Bendarly for it since I'm already on steroids. However, the rash has continued to spread and is on my thighs and patches on stomach too-it's sooooo itchy, and although the hospital gave me this special lotion, it feels nice but hasn't helped the rash. So, ill be calling my primary care in morning since it continues to get worse, it's now on my chin/neck. We think that this too is from the antibiotic and just a delayed reaction, but I'm not to sure I agree with that. Late Monday evening I noticed that my hospital gown had some blood on it and that my "chest" hurt, sure enough it looked like a stretch mark or two had split open and it was all red, raw and nasty, so nurse helped me clean it all off--- when doctor saw it this morning she said it was a fungal infection that had began to bleed. Awesome. So... I'm at home with cream on my chest for an infection and just keep coating my arms, thighs and stomach with lotion for this itchy itchy rash!  NO FUN.

So... PRaise The Lord I was safe on Saturday and that I do NOT have cdiff like all the doctors thought I did.  Prayers are needed that my knee does NOT get infected since part of it is open still and I am NOT taking any antibiotics anymore. That we figure out what is going on with this rash on my skin and it clears up. Also, that the infection on my chest clears up.

I also have my infusion on Friday and am worried like always bout the IV, especially since I had seven total pokes this weekend for the IVs. ER got it on first try but then it blew and they needed to start a new on. I have one the biggest IV bruises I've ever had on my arm - so pray IV on Friday goes well.

If you ask how I am you will get the response "ok" because well I am. I just feel numb lately and do not want to feel anything bc there is just too much. . Could be worse, could be better, so I'm OK.

Thanks for the prayers I appreciate them. Love to all!

M

Thrush...yet again...

Well I have thrush YET again. How many times have I posted that? It's pretty much a given when I am on steroids, my inhaler and antibiotic I get thrush! Well thank you oral surgery antibiotics for allowing me to swish & swallow nystatin yet again and taking an oral pill as well!! GO AWAY thrush, go away!  

Prednisone

Addison's

Well, I've had a rough weekend which ended with going to the ER around 5am on Monday all because of Addison's Disease. I am still in hospital and will most likely go home Thursday. We had to change around the drugs for the AI which has to be done very slowly. I thought I understood Addison's and what the adrenal glands so but I have learned a lot more about the disease and what they do- its kinda crazy. So, here I am back in hospital it's crazy. I'm trying not to get too down and frustrated but if its not one disease it's the other!

Good things

Today I had my infusion. I'm currently feeling "wonky", have a awful headache and feel real lightheaded and just blah. However some good things happened... Nurse Kim got my IV in on the first try this morning! Rheumatology called to say my inflammatory markers remained stable from last month AND my liver has normalized again! So, although I feel crappy some good things happened as well.

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!

Eyes

On Monday I went to the eye doctor. I went in because my eyes have been REALLY bothering me and its been a year since I went there. Well, they did EVERYTHING to me... I mean everything! I have to get my eyes regularly checked because of the medicine I am on and because of my Sjogrens.

They tested my vision with my current glasses. Found out my prescription is wrong.

getting my vision checked without glasses and finding out new prescription.

I had a total of SEVEN different drops put in my eyes.

dryness testing. Those pieces of "papers" go in your eyes and it measure the amount of tears I produce.

Had my eyes dilated. Had tear plugs put in.

We found out that I have small cataracts in both eyes, this is probably from the prednisone. They are small so we are just keeping an eye on it. It was also turns out that my eyes pretty much don't make ANY tears from the Sjogrens, so I need to do a better job and artificial tears and will stay on Restatasis. I am going to see Optometry to get my glasses and prescription checked and changed. It was SUCH a long appointment and we went over everything.

Good news!!

I saw hematology today and it was nothing but good news! Last round of blood work came back in "prefect range"! We LOVE to hear things like that. I got the ok to stop Coumadin - no more blood thinners! Woo hoo well, I have to take it while still in cast but when the cast comes off I say bye bye Coumadin! Which then also means I got the OK for surgery. It was suggested I do hand surgery first bc then I don't need blood thinners and its not as big as other surgeries and can be mobile. (All doctors want me mobile!) we talked a little bit about ports and pic lines and doesn't seem like I will be going that route (especially right now). Soo over all good news today!

Labs and Bone Scan

Yesterday I spent a some time at the clinic. I had to do labs for rheumatology, endocrinology and for primary care - it was a lot of tests and I was thankful I could do it all at once! I think they took nine vials of blood. I had the good nurse who got my vein on the first try! Always a plus. (pictures below) I also had a bone scan done- those are painless just take time.

Well, today I got the results. Luckily I am seeing all the doctors here within the next two weeks so I can actually talk to them. However, my liver levels are still elevated so for a little bit I am going to stop the methotrexate injections. I am happy about this because I hate methotrexate but at the same time nervous because it is helpful and not sure how body will react to not having the medicine. However, there are patients who just do Actemra infusions and no methotrexate- which is the hope for me! So here we go trying. My cholesterol is also still elevated but has increased that much so we are going to wait two more months to see if anything changes. For the past two year I have also been under watch for diabetes and lately my levels are showing I am EXTREMELY borderline for having diabetes do we will test it again next month and if it increases then I'll have to start treatment for diabetes but right now im just considered pre -diabetic. My c-peptide is high, which measures your body insulin- meaning my pancreas is working overtime to try to keep my blood sugars stable. However, my bone scan can back normal and improved with our last one!! So a little good news I can stop taking a drug called fosamax. LOTS of information today!!! Sheesh

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.

Addisons acting up

I have just spent the entire week either in the ER or in a hospital room at CDH. My Addison's disease acted up and my adrenal glands decided "not to work" so my body went a little nutty. I have now missed four days of work in a row -yup don't worry I'm totally OK to be back :) The nice thing was I had wonderful doctors in the ER, one we had before and he remembered me. Then we also had CUTE Dr. W as my hospitalist while I was admitted- always a plus! I guess if it is one thing we all should know is that you can never predict things with me!! MY GOODNESS. I can not tell tell you how frustrated I am yet at the same time I was at peace and knew I was doing the right thing. I need to be admitted because I need IV meds. I was amazed at all the help I got while being in the hospital-thanks everyone!!

All the different crazy bands I have to wear!

The AWESOME sunset on wednesday night out my hospital window. It was amazing.

My mom brought me these amazing lilies  (top shelf) that made my entire room smell SO great! The pictures were from my niece and the other flowers from my brother & sister-in-law.

Due to my infusion on friday, the ER monday and then being admitted on tuesday my poor arms look like pin cushions!! The one bruise sorta looks like a heart.

Days before infusion

So, this month is a little worse than last month in terms of the days before infusion. I am assuming this is due to me being at work. These "two days" before te infusion are beyond difficult. It's almost 3:00am and I'm laying here in bed with hot achy joints that hurt with any and every movement. My skin is all itchy, dry and rashy. My point finger is out of place and thumbs keep triggering. My eyes are Sooo dry. It's awful. During the day I felt like a fat ole achy slug. My body felt heavy and I was Sooo fatigued. I declared I can't do this - work & RA. However, I was told by friends and sisters few really bad days for a bunch of good ones. Soo... I lay in bed... With my new sleep apnea machine one, Pretty Woman playing on my iPad, Darla snoring away and olive licking my arm and if could cry I would be but my eyes hurt too much. I hate RA. I hate this so much. It's too hard...

Yay for friends

Today I was richly blessed and reminded that I have amazing friends. It was infusion day- so right now still recovering from that- headache, body feels wonky and I'm still achy. However, one of dear friends took off work all day to take me to my infusion and then stayed with me for the majority of the day. She also bought Darla & Olive each a new toy and some
New treats. Another friend came over and work and stay and helped me out until it was time for bed. Another friend came over with her little girl, brought me a coke and made yummy strawberry muffins! Another friend came over to watch Olympics and brought stuff to make bananas foster and she also helped out too! How great are they!? All while I sat and did nothing bc I felt/feel like trash from
Getting my infusion. And to top it off my sister in law stopped by and said hi and went grocery shopping for me and my other sister just popped by to say hi.