Slowly Coming Back- I Can't Go through TSW Again.

This is heart breaking. I was hoping t tell you all that this did it. That I was all healed and I wouldn't be writing in this anymore.

I believe the MRSA is gone, or at the very least on its way out but I watch as the TSW or steroid induced eczema starts coming back.

After a couple weeks of being normal and pain free, I could immediately tell when it started to come back. I thought I could handle going through Topical Steroid Withdrawal again, now being more knowledgeable and know how to handle it.


But I was wrong. As I slowly watched it come back I started to break. My hands started splitting again, the cut above my lip that I fought for all my withdrawal came back. I CAN'T DO THIS.

And that's when a small boil popped up on my back. That's when I realized I don't even have the option to do this.

I Started a GoFundME

Drowning in mass of medical bills and I could use any help. My health insurance refuses to help pay for my medications. And all these trips back and forth and all these copays...

GoFundMe

Thanks for following me this long.

I'll update when I can.

<3

Hope everyone is doing well.

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.

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

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. 

ARE YOU FUCKING KIDDING ME!?!?

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.

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.

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.

Day 625-HEALTHCARE SUCKS!

So after 5 days waiting my dermatologist calls...And the disease specialist not even willing to set up an appointment until they have her referral

She calls my husbands phone which was given to her for emergencies and leaves a voice mail. She's NEVER called his phone so I have no idea why she decided to do so now.

Her message was something like this...
So it did come back positive again,  you resistant to all the oral antibiotics, but we'll still be able to uses the bactroban for your nose, and we're going to up your bleach baths from 3 tims a week to 5. Hope you got an appt set up with the disease specialist. By the way our I won't be here for the next few days and we are closed on the weekends. So if you have any questions you'll have to wait until monday.

She called on the 20th at 5pm, on my HUSBANDS phone to basically tell me she will be uncontactable until the 25th (today).  She KNEW I couldn't make an appointment until I had her stupid referral!!!! So now today, finally!!! After a week of waiting, I call to make my appointment with the disease specialist, to which they have no open availability until June 4! I knew this was going to happen!

SO now, I won't be getting any antibiotics until then and no doctor care....
Usually I wouldn't be so upset but I'm quickly getting worse. I can't imagine how bad things are going to be before the 4th...

And just in case it wasn't bad enough I've developed boils on my eyebrows and one on my eyelid.

Congrats! It's SUPER MRSA!-Day 615

This last visit the dermatologist decided to swab my nose, and take a culture of one of the boils, saying she was going to get it checked for MRSA and to see what other orals I can take...It came back positive and she put me on another round of antibiotics but it didn't get rid of it. This last visit she swabbed and cultured again, and is going to give me a referral to a specialist.

I've had an infection since OCTOBER! Had she done a proper culture the first time I went to see her maybe all of this could've been avoided. Now because of her I've worked up a resistance to almost all oral antibiotics, she even put me on antibiotics that have proven to have no effect on MRSA like Keflex etc. She wants to send me to a disease specialist, basically saying she's done and can't handle this. I have to wait 3-5 days for the culture to come back before I can even schedule an appointment with the Infectious Disease specialist and we all know how long a wait is for a specialty doctor is in the US. People DIE before they are treated and receive the help they need!

 I feel awful, I feel like this is the beginning again. No matter what I do I just can't get this under control.  No matter what I put above my lip it weeps.

So now it's the waiting game....

 While I slowly get worse...


I avoided posting my progress for months now, almost avoiding writing in this blog. I had a someone comment on a lot of my posts bullying me, and belittling me, and condescending to me, saying they knew better. While they may have had a point that my skin was more seroius than I thought I didn't apprecatite the way they talked to me.

It takes a lot of courage to post these pictures and write about my experience, and someone tries to shoot me down further than I already am. I didn't make this blog so people could treat me poorly.

Day 596

Getting worse again...This is getting old.

 I had to call into work two days in a row, on a big sale/promotional weekend. I was just in such terrible shape... Work has been pretty understanding, but who know how long that will go on for.