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...

Wound Care waiting room

While I was sitting in the waiting room at wound care, this lovely couple was in the room. They sat there minding their own business while I checked in and talked with the front desk lady Michell. I asked Michelle how she was and listened to her explanation. After that I went and sat down across from the couple. They said "pardoned me but there is something about you that makes me want to encourage you and say don't ever give up." I was sorta shocked and said ok. "The Lord doesn't give you anything you can't handle. You poor sweet girl you can do it." My name was then called and I had to leave. Encouraged by these strangers then went into the room and we looked at my arms - and wow do they look so much better! 

After getting my arms wrapped and set for the next few days I went back to waiting room and the couple was gone. So, yeah... You never know what's gonna happen or who you will run into in a waiting room. But to that couple thank you for the bit of encourgament today.

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. 

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

Good news

It has been a very busy couple of days since I was discharged on Monday. I had a huge set back Monday night and was super sick again all night. So, Tuesday morning I called Dr Chang and he made a new game plan... Treat me as though I have cdiff  so I started the antibiotic flagryl right away on Tuesday. Tturns out I actually do have cdiff, results came back tuesday night, and was told Wednesday morning. I also have a UTI that we are treating too. Because of these infections I can not get my infusion until I am finished with my antibiotics so, Monday the 22nd I am scheduled to get it. Eek! 

Ok... THE GOOD NEWS... WE LOVE GOOD NEWS....

- saw dr kassar on Wednesday. He said my Addions is being very well maintained and we are going to lower the dose on one of my meds! He also said my diabetes is controlled and my sugars are the best they have ever been! So good I only need to test them once a day!

- on Thursday I saw Dr Sigalove. Got all the stapled taken out of my knee and thigh, he said that the donor site is healed. I think it looks awfully weird but hey, healed ill take it. The knee looks great and there is only a section about the size of a quarter that needs to close. But looks good, so good, I just get to use band aids to cover it aaaaaand I got the OK to swim!!! I just use a waterproof bandaid to cover it... And yes that afternoon I went to my sisters and got in the pool and was there again today! 

- saw dr Kungl today and my rash is pretty much all cleared up, a few more days using the anti fungal cream. We also then went over everything from past two weeks and talked about other upcoming appointments I have. She also agrees with me... No surgeries or procedures, we want my poor body just "to be". Let things settle, heal and try to get more normalcy

Well hope everyone is doing well. Thanks for the prayers.

Mandy

Home!

I am home!!!! Uhhhh.... So nice to be with my girlies and home. Very very thankful I had fun good nurses while I was there who helped me a lot. Turns out on top of the fungal gastroenteritis and the nasty rash, i also have a pretty bad bladder infection. So medication was started for that. I still feel nauseous and have bad abdominal pain but it is tolerable. Was told I may feel icky for another week or so but the worst is over. Ill be taking it easy the next few days, just thankful to be out of hospital. Thank you for all who helped take care of the girls while I was in hospital, for the nice messages and all the prayers. Next, I see my endocrinologist for the Addison's and Diabetes on Wednesday , then thursday see dr Sigalove for the knee and infusion on Friday.

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.

Sick and I'm hospital

Well... I hope everyone had a safe & happy fourth! I love that holiday everyone is just happy and having fun with family & friends! So, I have been bummed bc I have NOT been feeling week since I was discharged on Tuesday. I need some prayers that things get better soon, I am hospital and really wanting to leave! I ended up seeing my primary care doctor on Wednesday bc my rash had gotten worse and I started to have diarrhea again. She gave me a game plan and I went home. Well, that night I was up again going to the bathroom constantly and I itched SOOO bad from the rash. Thursday morning I tried to take my medicine and eat a banana and puked it all up, and then continued to dry heave, I also was having horrible pain in my abdomen. I called the doctor and they said I had no choice and had to go to ER. So, my friend Kirk picked me up and dropped me off at ER, where there was no real wait, I got a great nurse and a doctor who "knows" me. He hated what rash looked like and. Was concerned about all the diarrhea and vomiting, so I was give a bag of fluids and meds in ER and then was admitted to hospital.  I was MISERABLE. Because I am immunosuppressed I have a hard time fighting infections and can't handle being sick. Dr Chang, who is Gastro doctor and dr rhews husband came and has been treating me. He reran tests for cdiff, did an ultra sound of abdomen to look at things and did a bunch of blood cultures and blood tests. Turns out that I gastroenteritis the kind caused by bacteria/fungus and is infectious, and th bacteria/fungus is also causing my rash. And being on the antibiotic i was on was just making things worse. Getting my Infusion makes me very prone to Bactria and fungal infections that most people can just fight off with no problems, me not so much. I have started a fungal antibiotic cream for the rash which is helping, and meds for all the GI issues. I also have been on morphine  to help with all the pain I have in my abdomen.  I can not go home until can handle solid food, which I just tried eating. I am so tired of this and can't believe how sick I got and so fast. Because I am sick and have An infection I can't get my infusion either :( I feel very gross and icky and just praying this clears up soon and would appreciate the prayers. I did get a good room and could see fireworks being shot off from like 4 or 5 different locations! I also habe had wonderful nurses.Thanks for the prayers, here is hoping I can eat and go home tomorrow.

Past few days

Well, I got discharged from the hospital on Friday early evening. Friday was another LONG day in the hospital. I went with physical therapy again to make sure I could go up and down stairs and get around using my walker. Its just like after knee surgery, crazy. I also met with wound care nurse to go over how to change my bandage- I LOVE LIDOCAINE JELLY! aaaahhhh feels so nice on my wound. Also, met with regular doctor and infectious disease doctor. Infectious disease doctor went over signs I need to look for infection and discussed the antibiotic I will be on. SO many new doctors and nurses - crazy, I am SO overwhelmed and beyond frustrated. However, I sure have received a great out pouring of sympathy and support these past few days so I know for sure I am not alone and somehow I WILL get through this. 

The tentative plan is....

• wound care and bandage changes for three weeks
• June 3, I see the plastic surgeon to determine what type of surgery  to have
• Have surgery to close wound
• be in a brace and stitches/staples for 3 weeks
• Physical therapy after stitches come out

Being home has been a challenge but friends and family are coming over and helping. I have to use my walker to get around. I can not stand that long which makes cooking, cleaning and getting dressed a difficulty. I also can not take the girls out for their romps in the yard or walks like I have been because of walking or bending. Its so discouraging.

I also have to change my bandage two times a day- it is not fun. The gauze ALWAYS gets stuck in the wound, which then you have to wet to peel it off. It is really gross to look and just no fun. HOWEVER, I have successfully changed the bandage twice ALL by myself!! I think I am getting over my queasiness of blood and gross things like open flesh. 

I have a BUNCH of appointments coming up that will also make things a little more concrete on the plan.

Here we go to conquer yet ANOTHER adventure.... 

Thursday long day

Yesterday was a long day. It had several positive moments but long, I had my first visit with wound care, which was rather unpleasant, helpful but unpleasant! I had a consult with occupational therapy to make sure I could get dressed, go to the bathroom, pick things up ect... And I can. Physical therapy came and we practiced going up a high step, like the stoop by my front door and then practiced going up stairs... All of this is bringing TONS of memories back from when I had my knee replaced. I was also seen by the hospitalist. It was a long day. However, throughout the day I had some great visitors... They all came at perfect times and never overlapped it was awesome. You can see cute little Ry with my hospital socks on and her with the "yips" her Chapstick sitting on the bed. My mom brought me beatitude purple roses and flowers as well! It's been a very challenging past 48hours filled with lots of tears and frustrations but I've had wonderful reminders I am loved, I am not alone and I will get through this!

whats been going on

Well.. I said I would be back so here I am. The past two months have been some of the most trying days I have had, and I am so thankful that they are over and in the past. Here is a brief rundown of what went on...

In January I had surgery on my hand/fingers. Surgery was successful and I started OT. However, three weeks after surgery I had a "hole" in my thumb that was not healing from my the incision. It was considered a "non healing wound." Because of this I had to have ANOTHER surgery for them to fix the "hole" and restitch it close. Since, I needed another surgery it put off my RA infusion/Medication. The second surgery the stitches were going to need to stay in for three weeks -- meaning I would have to go a total of seven and half weeks with NO Actemra Infusion (which is my miracle RA medication) RA meds suppress your immune system and hinder the healing process. IT WAS AWFUL. Every day my RA symptoms got worse. I ended being hospitalized the week before my infusion was due and stitches were to come out because  the pain was so bad. My eyes got really affected by the sojgrens and I got this awful eye infection while in the hopstial along with a UTI.  I was in some of the worse pain ever. I wanted to die. I didn't think I Would be able to hack it...but I did. I got my infusion two weeks ago and slowly have been "coming back from the land of the the dead." I am due this coming Thursday April 4th for my infusion, which should really help me get to back a some sense of normally again. I am so thankful for all my friends and family who rallied around me and helped me through the difficult time. I guess we REALLY know that Actemra is the right medicine for me.          

Today I am doing well. My eye is doing better, we took out the tear plug becuase I am making tears! My cataracts have gotten worse and my vision has drastically changed in my right eye, so we are keeping an eye on some things with that.  I hurt like normal RA aches and pains. My knees are really bothersome but I am taking it one day at a time. Because I hit rock bottom I feel like I have to start over with things, which I guess is ok... the weather is changing, so I will change with it. I am trying to take little walks every day and on Thursday managed to get to the pool. I really need to work on my stamina, strength and just trying to do more... so baby steps.

So... hopefully I be back to blogging a little more.

I am excited for this weekend, weve got family in town, a baby shower and easter! Fun times!!

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.

NINE DAYS

After NINE days... Yes, NINE... I am home!!

I am cozy on the couch with my girls!

Still here...

It's been a week and I'm still here.