Sunday, June 28, 2015

Last Treatment-Hopefully

The last treatment didn't go as smoothly as the others. Much more painful this time around. Short version...she hit a nerve and then blew  vein. Since she did that she had to do the other arm, which then EXPLODED with blood. Took her half a box of gauze and six alcohol pads to clean it up. I don't usually document this type of stuff...but this was after she cleaned it up...

 Feeling pretty with my new hair! Some new makeup (haven't worn makeup in years)
And representing my house! <3

I had a follow up with the disease specialist a few days after the last treatment, where I told her I had 3 boils pop up. All small, and with the last treatment none of them formed heads, they just went down. All she said was to call her if I had any more problems and didn't really address what we would do if it do come back.
Not as bad as other...but still..

I better not see anymore. I'm working on having a more Auto Immune Protocol Diet. But it's very expensive to eat like that, and I hate fish....But I gotta do everything I can do heal my body from all the damage.

Tuesday, June 23, 2015

Forgiving Myself and Feeling Alive Again

I can't begin to describe how this feels. I feel so happy for this, but I'm scared. Already scared for a new withdrawal. I have PTSD from this. The husband is trying to help me feel pretty again and not to beat myself up. I cried while putting on the steroid, I've had nightmares and yet here they are.. saving me. I've written in my blog before on how I felt like I was losing who I am, losing myself. Like TSW was stealing my happy bubbly personality, it was robbing me of everything.

When that time comes I'll have better knowledge on what to do/what not to do. But for now....

Here's me..
The real me.


 He's my world, my best friend, my other half, my everything.

A couple months before TSW
Our anniversary. 6/23/14
Our anniversary 6/23/15

Friday, June 19, 2015

The MRSA is Strong with This One

So here I am, a week after 2 treatments and a little under two weeks use of clobetosol, I have already started to ween off it. 

Things are looking good but I still have some boils popping up. 
The disease specialist wants to do another round of antibiotics, but once again we have to fight my insurance. The insurance won't let me use the Dalvance again because they won't "cover" it since I already used it. She said if I were to get another treatment of the Dalvance it would be $5000 per treatment. The doctor suggested a different oral antibiotic called Zyvox but mentioned that it was costly.

I had to go physically pick up the perscription because the nurse had included a coupon with it and said "This will help a lot, you'll pay next to nothing." NOT THE CASE!!! After taking it to a pharmacy they tell me since my insurance wouldn't cover it it was going to be $3800 for 28 pills!!!!! AND THAT WAS WITH THE COUPON!!! I literally gasped and covered my mouth to which the pharmacist said "Yeah I realize that's a bit of a shock, I recommend you call your insurance and see if they'll approve of it."

After calling my insurance and asking them to approve it because it was the only option I had left they tried to push Clindamycin, to which I told him I was already resistant to. I told him I was out of money and my life was on the line. He then said there was a third party drug company I could call and see if they would approve me. When I called the third party company I was having trouble remembering the name of the new oral antibiotic, I told her I couldn't remember the name and she got very catty with me and said they don't cover most antibiotics anyway. 

I got off the phone and just cried. Why won't anyone help me? I just want to be healthy. Is that so much to ask? Apparently so. 

I called the disease specialist voice shaking and left a message "Thank you for your help but I can't pay for any other treatments." 

She then called back and said that they could do two treatments of the Dalvnace for $2932.40 but it had to be given TODAY because it's on a schedule and I have to pay before I can recieve them. 

Where did this new magical number come from!?! How was $5000 per treatment before? Who was planning on pocketing that extra money?

So four treatments...$5117.20 on my husbands now maxed out credit card. This is how health insurance works?  They barely paid for anything! This is a life threatening infection, I couldn't imagine if I had cancer or a serious surgery. But seriously what do I do if these next treatments don't work. I really have no money. I even looked at stuff like gofundme but it's just not the type of person I am.

I just don't want to be sick anymore.

Thursday, June 11, 2015

My 1st IV Antibiotic Injection and the END of topical steroid withdrawal

I had my first 1000mg IV antibiotic on the 4th, and the second dose  of 500mg today.

I had to fight with my health insurance (Blue Cross Blue Shield) for the past couple days over which medications they would "allow" me to use and what they would cover. In short nothing.
They don't cover any MRSA drugs that I'm not already resistant to.

I was given two options, once a week injection for two weeks or a pick line. Both would be over $2000. I went with the cheaper one, which ended up being the once a week IV. This worked out better for me, if I decided to do the pick line the dressings/tape would have to be reapplied and what not. The pick line would have really bothered my skin.

This is a new drug on the market, that just became available last June. Dalvance is a once a week IV antibiotic and has had very good reviews. For most people two weeks (1500mg) was enough to kill the MRSA.

The experience wasn't fun, the IV itself hurt, but the alcohol pad she used to sterilize my skin made me cry out loud. Ian took the first day off to be with me and I'm thankful he did because I was really scared. I shouldn't be here, I'm young, supposed to be healthy. I don't know what I'd without him. He wasn't able to come to the second one, and I felt it.

I had to pay for the treatment before they would treat me. My insurance only "covered" $999 of the bill. The cost for 1500mg of the drug was $2184.80 out of my own pocket. Straight on to the credit card... :(

While I have been clearing up a lot I still have some boils popping up, the nurse said its normal. But I was worried that my feet and wrists had accumulated so much damage, they didn't look any better. I was worried that this antibiotic alone wouldn't be able to get it. So I had to do something we've all had nightmares about....

I used clobetosol. I will use it for 2 weeks and taper off. Clobetosol is a class IV steroid drug, so it can't be used for a long period of time and can not be stopped cold turkey.

What does this mean? This means I officially no longer going through Topical Steroid Withdrawal,  as this became a matter of life and death. Once I'm no longer using the Topical Steroid I may go through a withdrawal again. I'm scared. Was everything I did for nothing? Did I suffer for no reason for almost 2 years? Will this really kill the MRSA? What happens if it doesn't?

 After my 2 treatments and 3 days use of Clobetosol.

Monday, June 1, 2015

Boils Everywhere!- Day 632

Legs, chest, tummy, face, arms...EVERYWHERE!

But I'm getting worried because they're starting to look different. usually they're yellow/white/greenish pus...But now its getting like a dark red ring around them....Like blood is getting trapped, or the infection is getting worse...

Sorry for the harry legs, but I haven't shaved in months, afraid the follicle getting infected or ingrown and chancing another boil.