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.

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...

The last year since we blogged

So what's been happening over the past year.... The main thing is I got diagnosised with s rare infection in March that we are still dealing with - Mycobacterium chelonae. And all I can say it has been a nightmare. Multiple IV medications, horrible sores which turned into wounds, hospital stays and a new doctor. I'm working on adding another page about the infection. But because of this infection I have had to stop my RA meds - which is awful. The other main thing is I have a broken back - two compression fractures at T11 and T12. I have had two different back braces and also now have been using a walker, I Just now this week got the OK to have my kyohoplasty surgery done which should really help me out. I have been in and out of the hospital all spring and summer due to the infection and RA flare ups, I got blood clots again in my lungs and now will be on blood thinners for life because it's my third time getting them. I've been Rx with anemia and needed blood transfusions because my hemoglobin fell so low. Fall has been good to me and things are going ok.. So... That's it in a nutshell.

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. 

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

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.

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

latest carepage

Here is the latest CarePage update...

The adventure continues… 

On Monday I saw Dr. Sigalove, the plastic surgeon, my older sister went with me, and agrees he’s nice to look at J ha ha BUT he said the wound is doing what he had hope it would be doing slowly healing and making new tissue. Yay! So, surgery to close the wound was schedule for two weeks on Tuesday June 18. It is suppose to be outpatient and is being done at CDH. He is pretty much doing a skin graft on me. They will put me under. The wound will be “surgically cleaned” and then A patch of skin will be taken from my thigh, and then be put over my wound to “patch it up”. I will be in a immobilizer for 4-7days because its right over my knee so it cant bend. After the immobilizer it will take about a month for the rest of it to recover and heal. SO, for the next two weeks I need to continue to bandage my knee and do wound care –UGH. SO annoyed and sick of this.  I am having to switch the type of wound care that I am doing for the next two weeks, which is a pain. I was using this stuff called Prisma, which was like a form of collagen that helps produce tissue growth, healing and keeps the wound moist. The prisma dissolves and you don’t have to take anything off when you change the bandage. Well, I have to go back to “wet to dry” bandages. Which means I take wet gauze and pack it in the wound and then put dry gauze on top. This is a little more painful, because every time you change the bandage you have to peel off the gauze off the wound, which then “peels” a thin thin layer of tissue off – it hurts. Dr Sigalove wants this bandage type because it helps keep the wound more “raw” and keep infection away better. UGH. I am for some reason really worried and freaked out about this surgery… Dr Sigalove, my primary care, rheumatologist and endocrinologist have all gotten “worry phone calls” from me and all have reassured me, this is the right thing to do, it should go fine, and we are taking all the necessary precautions.  I will go to the wound care clinic on Friday the 7^th and 14^th to keep on eye things until surgery.

This coming Monday June 10, is the “oral surgery” to get rid of my wisdom tooth. As a precaution I am starting an antibiotic this weekend, and will have to take a stress dose of my medicine for my Addisons. Otherwise, im being told this is should go smoothly and without complications

On Thursday June 13 my next Actemra infusion is scheduled as well as seeing Dr Rhew, my rheumatologist.

I will continue to wear the air cast on my right ankle for the next two weeks as well. My right knee, Norma, and the ITBand issues are really bothering me and cuase a lot of discomfort, despite doing everything I am told to do, so I will head back to orthopedics to address that next week as well.

Thanks for all the encouraging notes, emails and texts… I love them. Im that person who keeps things like that and appreciate it, so thanks.  To answer the “how am I” question its sorta trick and a very loaded question… I am doing alright.  Things are hard and discouraging at time . They also are beyond overwhelming and wearing on me. Meltdowns are more frequent, as well as tears,  but im trying to keep my head above water as much as I can. Ive told some that this whole knee/wound thing is really throwing me for a loop and the diabetes diagnosis makes me a little crazy – not to mention the other diseases im trying to manage. But I am trying my best and trying even harder to be more open with people and reach out for more help, not as easy as one would think… I do NOT understand why God has thrown all this my way, but for some reason he has, so I will keep the hope and faith and continue to truck along on these not so fun adventures.

Love to all

Mandy

Busted open!

Warning graphic pictures of blood and open wound....


Well, as I have mentioned I am trying to make small positive changes in my life that will hopefully becomes more permanent and help me. I want to be doing all that I can. So, I got new walking/gym shoes and going for at least two lil walks a day with the girls. I was able to go just able to go completely around the block and up the street this week and was getting ready to increase the walk a little, like I have been over the past month or so. It's been great too because slowly we have been having nicer weather which always helps boost a down person,especially one who loves the sun! On Wednesday, it was a beautiful aftnoon, it was a lil chilly but in the sun it felt just fine. I put the girls on the single leash that splits into two and off we went. We walked around the block and up the hill. We were three houses away when all of a sudden Norma (my right replaced knee) buckled, I twisted my right ankle and WHAM I fell on my left knee, recently named Ethel. I screamed! I could tell I was bleeding and new something was very wrong. The girls were fine, I layed on side walk and screamed for help and started to panic. It was the one time I forgot to carry my phone with me. No one was around. So, I mustered the strength to stand up and hobbled home. I sat down and could see blood on my jeans and felt it dripping down my leg - which it was. Pulled pants down...,looked at knee... Threw up in my mouth and sorta blacked out and really panicked - it as BUSTED WIDE OPEN! I called my friend Sandra hysterical and She started her way over, I then called my sister hysterical and freaked out and she tried to calm me down and reassure me I was ok... Sandra came... We went quickly to the ER... When nurses and doctor saw everyone's response was I really busted open my knee... Sure enough... I got a row of internal stitches and seventeen staples!!! Crazy!!

Today I went for a wound check and staples and cuts look ok. I had xrays done and my knee cap is not broken, we are however worried about how else i might of damaged the knee-- torn things? Broken carriage? SOOO Ill see orthopedics on Monday.

I have not slept these past two days very well. It hurts SOOO much and I can barely walk. Ugh.
It is SOOO frustrating!!!

Well here are some pictures.

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.

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!

Frenchie 2.0

Last year there was "operation olive surprise"... This year was "Frenchie 2.0" my big brother did it again only roped my sister in law into the mix as well. On Christmas they snuck "my girls" into the hospital for a quick Christmas surprise and lovin. I was shocked! More pictures to come

Home

I hope everyone had a wonderful Christmas! I unfortunately spent it in the hospital but am home now- came home Wednesday morning.

Cousin love and leaves

Need I say more... I love my cousin ari dearly and her little boys!

Today I woke up and saw beautiful red trees!

Love cousin love. Love red fall trees

Pain is lonely

If its one thing I have come to realize and accept is that pain is lonely. Being in chronic pain gets really lonely and old, real fast. Who wants to hear how much you ache and hurt? that You always have pain? I have come to learn that in moments when my RA flares up or things are out of the normal painful is when I often feel the most alone. I dont like people to have pity on me or feel bad for me. i dont like to admit people how hard things are and how painful my life is. So, this past month I have tried very hard to ask for help on these painful days and seek out friends who will visit on these hard days. Also trust people when they say they want to visit that they really do want to see me. When I have people around- It helps me. Reminds me I'm not alone despite how my body makes me feel. Having people with me makes me happy and also serves as a great distraction to my pain. So, this hospital visit I have been very thankful for my siblings who have visited, friends who have visited, my mom and phone calls... It has really helped me cope with this nasty flare, especially coming off such a hard last week. Pain is lonely and if people help my pain and don't mind seeing me in pain I'm going to continue to try more and more let people see the raw real painful sick Mandy.
Here are some of the wonderful faces I got to see today!