Broken ribs.... Again,

This has been my view pretty much all week, but especially at night. I have been experiencing sme really bad chest pain, having difficulties breathing, and trouble laying down. So, I have been in the recliner chair nonstop and even sleeping in it. I told Dr Rhew about my pain and so we did X-rays... Turns out I have "a few fractures." UGH! No fun. I'm not exactly sure what I did but think it was on Monday when I tried reaching over the toilet hand rales to pick up my pants. Otherwise I'm not sure. I broke my ribs once before when I totally passed out and fell out my front door.they really hurt. We believe that because of my osteoporosis my bones are so brittle that they are breaking more easily. 😩There is nothing you can do for broken ribs except rest, ice and pain meds, so that's what I'm doing and praying they heal up fast! 

Glad my girls like to snuggle"

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.

Really!?!?!

I went to the pain specialists yesterday to talk with Dr Maginali because he is the one who would be performing the kyphoplasty. I went in thinking we were going to book my procedure and it would be a quick appointment so I decided not to have anyone else come with me... WELL... That was NOT the case! I left in tears and was shocked and I kept thinking - really!?! Again!? Turns out it appears that I can not get the kyphoplasty done based on the newest CT scan. I know, really!? After waiting since April and wanting this done for so many months and being told this would help my back pain and be helpful! Really!? Again things never go as planned for me and things just suck. Apparently, one of the compression fractures is a prime candidate for the procedure the other is not. The second fracture is very bad in how it broke and one of the worst he's seen. Tears dripped down my cheeks as he told me this news and went on explaining the rest. If they were to do the kyphoplasty he is worried and scared that I could end up paralyzed from the procedure- REALLY!? Paralyzed? The way the bone crumbled and broke is towards the spinal cord and there are bone fragments that are very close to it. What could happen is when the push the cement in the fracture it could push those bone fragments around moving them into the spinal cord and could/would hit it, making me paralyzed. As I sat there hearing this news I just had tears. Really? Again I am struck with being a complicated case. He also told me he's not sure what they can do and there is a possibility that I may just have to live with the pain I have. I then started to really cry, because I can't live like I have been,,, the 24/7 pain, having troubles sleeping, having problems walking, sitting and standing, not being able to bend over or lift things. I can't I told him, isn't there anything you can do?  He said he was going to take my MRIs and CT scan to his partner and then two spinal surgeons to see what they say about my case and get others in puts. So, now that a day has gone by and I've had some time to process this I am praying that these surgeons can see something different and come up with some procedure/surgery for me to have done, for something with my back needs to change. I should find out next week what they have to say. 

Wreath

The newest wreath I made

Kyphoplasty!

Today I saw Dr Mohan my back Doctor and he has given his blessing on the kyphoplasty for my compression fractures!!! So hopefully within the next 2-3 weeks I'll be able to get it done!

Here is a great video that explains what it is and how it's done.

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. 

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

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

Beach day!!

If you know me, you know I LOVE the beach! Every summer since i was a baby my family goes to St. Simons Island GA. It's one of my happy places. I love it.  One  of the many large bummers about having rheumatoid arthritis and Addison's disease is I have NOT been able to go to the beach...whether it be Georgia or Florida beach or even Chicago/ Lake Michigan beaches. I have not been stable enough, medicines weren't right, reactions were too risky ect,,, well... TODAY... Jess, Riley and Sandra and I drove about two hours to Warren Dunes in Michigan and spent the majority of the day there and it was fabulous! I had so much fun and highly enjoyed it!! Even better... IM NOT IN YHE ER right now!!! Yes I am sore but that's ok, thats why we have ice and pain meds...walking in loose sand is tough stuff!, throw in it two bad knees and its real hard... But I'm ok!! It was a wonderful day and ill take that. Yay!!!

The view all day!

The dunes from afar!

Sandy Toes

Ry and her squinty face

Burying my feet in the sand

Riley snuck up on Sandra and just jumped right on her!

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.

Orthopedics & knees

I am so thankful that someone invented waterproof band aids, and that there is one big enough for my knee! I love being in the pool, if I could live in one I would. So, as you can imagine I've been swimming a lot since Thursday. Even though i "pay for it" when i get out of the water & later that night, its worth it My townhouse complex has a pool, my sister has a pool and I belong to Wheaton sports center which has the warm therapy pool! Pools everywhere!

Anywho... A few little updates on the kneeS after seeing orthopedics today. We shall start the left knee, the one that has the wound and I call Ethel. Yes, I name my knees. The wound looks good... Was told it will take a good 2-3 months for the rest to completely close. Yikes. But the days of bandage changes and gauze are over with and band aids are the new normal for the wound. Now, since I first fell back at end of April we have not been to adress how my knee was hurt. Then I fell again in may, and then we had the skin graft surgery SOOO NOW we were able to address issues with the knee. Now, I have been able to tell that things are not right with my left knee but didn't realize HOW BAD. Turns out ONTOP of arthritic changes, I have bad patella tendinitis AND a torn meniscus. Yup, which means surgery. (Cue the watery eyes in Mandy) Then, came time to talk about Norma, my right knee, which has given me no real issues until I fell. Turns out my scar tissues has broken up and is shifting in my knee, as well as there being some loose bone fragments. These pieces are rubbing, crackling and cause shifting. Also, that the synovial fluid around my joint is still greatly effected by RA and this irritates the scar tissue and fragments. The only way to fix that yup surgery (cue tears completely running down Mandy's  cheeks). There is ALSO a possibility that I have cracked or slightly chipped a part of my my replacement but it isn't completely for sure, which this means surgery. (Cue full blown tears and sniffles from Mandy, which lead to a hug from doctor). SO NOW WHAT?! Seeing as those I was told that BOTH knees need surgery. I looked at my doctor and all full of tears and choked out to  him, "I can't, Big mike, I just can't." Then sorta of had a "why me, I can't handle this, I can't catch a break" meltdown in the office...thankfully Big Mike and his nurse listened and calmed me down. Then we talked and put our heads together. Here's is what we came up with...

- I can not have any surgery on Ethel (left knee) until the wound is completely healed, which earliest would be three months - SOO we are NOT going to bring the "s" word up until then and we will revisit it then

- a cortisone injection was given in Ethel to help with pain

-holding off on MORE physical therapy bc I said I would do it on my own AND  I was given the OK to go to the pool as often as I liked! Was also told I can ride a bike again! Yay! Anyone up for a ride on the tandem! 

-there is nothing really but surgery that can help dear ole Norma the right knee, so we checked prescriptions I have here at home for pain, and I ordered new electrodes for my HWave Machine to just help manage pain & discomfort. RA sure has gotten the best of My knees! SOO... I have given myself a minimum of no surgery for three months and am ok with our game plan. I got hugs from everyone in the office and made my appointment for three months and left. I want to TRY to enjoy the rest of summer and establish some sort of routine and normalcy. I will swim and bike and walk as much as my diseased body will let me and I will TRY not to think about surgery on the knees for the next few months bc a lot can happen between then - especially when your name is Amanda Jane :)

Now, this is a side note... I know people want to help, I know people worry about me and care for me, but I would GREATLY appreciate it if you would NOT bring up my two falls and me falling. The "suggestions" I have been getting from people are NOT  helpful. The "jokes" about me falling or how to stop me falling are NOT nice, actually have hurt my feelings and have gotten really old. Please trust me and that I have gone over every angle of my falls and how to prevent new falls from happening with MULTIPLE doctors that I see and I am doing everything in my power that I can so it does not happen again. 

I can not thank you enough for all the prayers and many nice notes. They are greatly appreciated. Hope you all can enjoy the rest of the summer- it sure has just FLOWN BY!!!

Love to all

Mandy

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

Old self and healthy body

Tonight as I have been lying in the hospital bed I've looked at my bruised arms from IVs, the rash on my arms, the medical bands on my wrist and my giant belly... Ive been looking at my life right now... i cant work, i can barely go for long walks, its hard fi climb stairs, I'm jn some sort of Pain all the time...i dont like It. With that I've been thinking of the "old Mandy" who was in shape, healthy, had cute hair, could wear contacts & make up and looked pretty good. I could be spontaneous, I could work, I could run... I could do what I wanted... I miss that. I miss healthy Mandy. I'm not the biggest fan of RA, AI, Diabetic Mandy.  I feel like I could be a cousin to Jobba The Hut. I wonder what lies ahead and hope things can/will change....

In hospital bed tonight July 7, 2013

- At a restaurant  June 30, 2009

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.

Good day

This week there has been a whole lot of sitting on the couch and watching movies, TV and getting snuggles. I have been sooo frustrated with my knee and this giant brace/immobilizer has really been a pain. My thigh burns like crazy and my knee itches and stings. SOO crazy and maddening. However,  I've also been super blessed this week by people coming over to help me...

- my sweet cousin & her kids spent the day with me

- my friend and her husband brought me dinner & helped me with an ant problem in my kitchen

- my neighbor has come and helped with bandage changes and made dinner

- my other neighbor grilled for me one night

- my mom went grocery shopping for me

- one of my best friends & her little girl have come in the morning to help me get ready 

I've been surrounded by lots of love and help, I am blessed.

Today I spent the day at my sisters pool with friends & family. Bummed I can't swim but it was great to be outside and with people who I love... Came home to a oober clean house too! . My ankles are hurtin and swollen but that's not bad considering how warm it's was... It's been a good day!

One more day in brace....

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!