Addisons got me!

Whenever there is a white and red band on my wrist it's never a good thing 😒

My Addisons got the best of me tonight. Over the past few nights my Addisons has been acting up but we have managed to stay away from CDH. However, tonight was not the case. I came home from small group and started to violently throw up, got super dizzy and almost passed out - not good. I then tried to take my meds with water and threw all of them up- not good. So, first we called the doctor which he told me what I knew but didn't want to hear was go to the ER so I could get IV meds. I called my dear friend Trudy and she came and got me and that's where I currently still am down in the ER waiting for a room in the hospital. We had no real wait in the ER which was great! Saw the doctor got my meds and now we are just waiting to be transferred - it's 2:15am we got here around 10:00pm. There has been improvement with the IV meds but I still feel like I need at least one more dose before I feel "better" So, I'm hoping that this is a one night hospital stay... We shall see...

October ??

What happened to October??

I can't believe that it is November 1… WOW. Well, welcome november I hope you are good to me. October turned into a month of mandy getting more help for herself and taking time to work on me. So, thats what Ive been doing. Working on me and trying to get out of my depressive funk. It also included two not so fun hospital stays at CDH. One was for a pretty bad RA flare up, I got discharged and four days later ended back in the hospital for a Addison's flare up. NOT COOL. In other news, I now no longer need to go to wound care because my knee i practically closed up and healing how it should be - praise God, its only been four months ya know :) I have been enjoying all the lovely fall colors (my favorite) and just taking things one day a time. Hope everyone is doing well. 

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. 

Here we go

Well, this afternoon has been one that was filled with LOTS of nerves, panic and anxiety because my dear friend Lloyd and his buddy and my new pal Alex with University of Chicago Friends and Family called saying they all of sudden they were able to get openings tomorrow for me – EEK! I was told when given an appointment you take it- but TOMORROW! I was told end of December beginning of January… this girl who plans, thinks things through, sorts through details ect… NOT READY, but here we go. Tomorrow Wednesday November 20, my journey with University of Chicago to get FRESH eyes to look things over shall begin AND we shall begin in the area of Rheumatology. This is the “easiest” of the areas that we are looking at. Tomorrow is an appointment, and im hoping that’s ALL it is. After talking with Alex & Lloyd and trying not to puke on the phone with them (when im really anxious I puke, not cool Mandy) we got the details squared away with things down at their end  THEN my end here began…phone calls began… who could go with me, my doctors needed to be informed, papers need to get ready, blood work… ect.. AHHH… Mandy a hot mess… In true fashion sent out the texts to family and my “Mandy family” and well as the night has progressed… I have been slowly calming down, I can do this… here is what I have been reminded and am constantly reminding myself:

-       my timing is never right, Gods is

-       I am created by God, although my body is unique -I am His, my diseases don’t define who I am. SO, yes let the doctor and his fellows exam me, poke me & my unique body but let them also see ME, Mandy.

-       these doctors are NOT trying to find anything NEW, just looking things over to see how they can HELP. Part of my nerves – every time I have seen a new doctor they tell me something else is wrong with me. But we have nothing new we are trying to figure out, we just want to see if we can improve, change or better things.

-       ive been down to U of C before and it was a great experience

A good friend of mine is going down with me and we heading down shortly afternoon. We have to stop at the clinic here to grab some things from my doctor and then we are off. My actual appointment is at 2:20. So… we shall see how it goes… and the start of another chapter in my book begins (if I ever write one)...

 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you HOPE and a future.
 Jeremiah 29:11

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

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

What was going on

This is part of an email I sent my family on Sunday, it does a little explaining of Addisons Disease and how it works with my crazy mixed up body. Hopefully give you a little clearer pictures of what was going on the past week or so. 

What's been happening.

I have Addison's Disease (adrenal insufficiency).

I have Stills Disease/Rheumatoid Arthritis.

I am allergic to nonsteroidal antiinflamatories (NSAIDS)

This combination is very strange and rare.

Whenever the RA acts up I have to go on steroids not NSAIDs. When you are on steroids you can not just stop taking them you have to taper off them, especially higher doses.

Your adrenal glands make a type of "steroid" that control a WHOLE LOT of things. When you have Addison's your adrenal glands "shut down" and don't make what they should so you have to take a type of steroid so your body can function. 

My Addison's can act up anytime my body experiences stressors, get sick, RA flare or just out of the blue. When AI acts up my body kinda shuts down... I get very nauseous, diarrhea, lighted headedness, stomach pains, body aches, body temperature go nuts..these are all signs of danger that I could be going into a adrenal crisis (bad news bears). In order to help and avoid a crisis, I need to get larger amounts of the "steroid" your adrenal glands make, this is given via IV and I also need to be pumped with fluids - which means hospital. After being pumped on the larger amounts you have to taper off them. The taper needs to go slowly so the Addison's doesn't act up, which is tricky. It's important to taper off the steroids so your body can adjust and compensate back to normal.

With the AI things can also escalate rather quickly and at times strangely.  Unfortunately,  neither RA or AI  is predictable - which as you know is frustrating and at times complicated & scary. It also means ER & hospital visits so I can get the higher doses, bigger medications my body needs and all my issues can be addressed & monitored. When I have a RA flare - AI needs to be addressed. If I get sick, a cold etc - AI needs to be addressed. If I experience weird amounts of stress - AI needs to be addressed. Since, a lot of AI symptoms can mimick and appear like the flu, a virus, food poisoning... I have to be in good communication with doctors (which I am) and have a action plan set in place (which I do) so we can figure out what we are dealing with. 

So, as you can see, there is not formulaic treatment for me. There is no formula. Ever.  And if you ever feel confused and frustrated in understanding what's going on with me, know that you're not alone. As I constantly put my life on hold and I'm consistently reminded how little control I have over my health, I am often frustrated. It's a merry-go-round that I feel like I can't get off.  

This week i was at the beginning of a adrenal crisis. Was pumped with fluids and given IV meds. The doctors and I have done lots of communicating and talking about things and making different plans for treatment. The taper this week has gone slow and has been tricky bc I kept having set backs with AI. Currently, (Sunday evening) I am NOT in fluids anymore and heart is stable. Everyday we have been tapering down on the steroids by 25mg.

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!