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. 

It finally came!

We have been waiting for this medicine for over 8weeks and it finally came! This medicine came from the government! It's crazy. I started taking it on Saturday and so far no real issues. The bottle smells like coco! This is medicine is the last antibiotic that I need to help with my infection and because of this medicine I now can get my back procedure done. So happy to have it.

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. 

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.