When you aren't "bad" enough -

Hey guys!

So today I want to talk about options for when a doctor deems your condition not severe enough to step up to the next rung of treatments.

This can happen for a number of reasons, and can be quite upsetting, because for us, the fact that it is there at all feels terrible, and feels incredibly unfair that a treatment should be ignored because its by textbook example "not bad enough". However, when you consider that some of the treatment options offered can cause more problems that they solve, its important to remember that in some cases it may be in your best interests, plus, you need to have somewhere to go, should things get worse. Its not impossible to climb the medical ladder, but it can take a lot longer than someone with a large amount of coverage.

I know its incredibly frustrating. It can take such a long time to get onto a treatment that even dents the surface of the issues, and no one wants to keep it longer than they have to. But the problem with an autoimmune disease is that it begins on the inside. The skin issue is a manifestation of a bigger problem, that creams and other symptom based treatments just don't touch. For some folks who have it appear in times of stress or have other external triggers like types of food, drink or medications, benefits of topical treatments can be great! For those of us who had no obvious trigger or who have had it from birth or very young, these provide relief but not alot else.

Now, I've long been of the opinion that if I had been given the opportunity to try some of the more hardcore treatments like Biologic's a lot earlier in life, it would have saved me a great deal of heartache, pain, suffering and deterioration.
We are often expected to get to breaking point before begging for something else. I know I will hold out as long as I can, do as much as I can and suffer as long as I can, before I'll even book an appointment with Dr Derm, because he intimidates me so much. It tends to go in a cycle.

When you don't have a large amount of coverage, but its somewhere obvious like your face, or arms or hands, it can feel as bad as if your entire body is covered. It's incredibly difficult to hide and because of the texture and colour makeup can make it look worse. It can quickly make you want to go into hiding. A doctor telling you that its not severe enough for anything stronger than creams is shattering because if they don't work, your stuck with it while you wait for it to get worse. 

My advice for that would be, if they choose to go with topical, fight for UV-B treatment as well. My Derm bulk bills for the visits, as I believe most do. It is a total pain in the ass, and can be really bloody inconvenient, but it does provide real relief for alot of people and when continued where possible, lasting relief. If you are lucky enough to live in a warm climate, get out in the sun as often as possible. I always use sunscreen, even over my P-skin, and still see improvement, its just a lot less concentrated and can take a little longer. I live In Tasmania, and in winter, this isn't really an option without freezing your nips off, but as soon as the weather warms up, I get out for a bake, as often as I can!

Another thing is finding some non-steroidal creams that you can apply as often as you need. There is such a thing as topical steroid addiction, this occurs after long term use of topical steroids. It happens when your body begins to become immune to creams, so stronger creams are used, and the skin begins to rely on them just to be skin. Withdrawal can be excruciating, debilitating and I think most who've gone through it would agree, much worse than their original condition they were using it for. I have a guest post coming up soon hopefully, from Simon, who is currently doing journey updates on his dedicated Instagram account, I recommend you check it out! 

The other side of things is with your joints. For me, while the joints that are affected are some of my major ones, they are not considered "bad enough" to qualify me for treatment on their own, or at least they weren't up until very very recently - keeping in mind, at my worst, I could not walk. My Spine, Neck, Hip ball joints, pelvic joints, shoulder and wrists are affected, as well as my jaw. When I started Humira, it was chosen for me as I didn't qualify for it for my joints alone, but it was also the thing hospitalizing me once a month or more, and it was clear something had to be done. My Rheum through the public health system conspired with my Derm after I was admitted for a week of wet wraps after a particularly bad flare, and I was on Humira shortly afterwards. As I mentioned in my last post, I am now back seeing a Rheumatologist again, after the Taltz hasn't seemed to make much of a difference to my joints. 

I am somewhat lucky in that all the things given to you to treat Psoriasis, are also used to treat PsA. That means I had already tried most of them and could jump past Mtx, Sulpha, and CycloSporin directly to the biologic's, but I know there are a lot of people who cant. While no one wants to spend their time in and out of hospital, it was the only way I could get anyone to listen to me, the only way I could get any relief, the only way I could get the attention of specialists, and annoying them, I believe, is the only reason I got offered Humira in the first place. The more of a burden I was to the public hospitals, the more assistance I was offered in the home - from medications, to physio, to doctors coming to me. This may not work for everyone, but I do credit it for getting to my current predicament. 

Again, this is where I am of the mind set that these treatment options should be offered to people before they get to the point of no return. If someone with Psoriasis isn't severe but is likely to develop PsA, why not give them the biologic's to not only relieve their skin, but also attempt to prevent, or at the very least, push back the decline into PsA. 

Instead, we are often forced to just sit around and wait for things to get worse before they will actually allow doctors to do anything about it. For us in Australia, we are stuck mostly waiting for Medicare to come through. I spent years of my life watching everything get worse and worse. If it isn't medicare, its Private medical Insurance who need to approve the use of these very expensive drugs - don't even get me started about the costs of the drugs themselves. 

We have such little control over our bodies, our treatments and our lives in general, when so much of this could be prevented, or at the very least pushed back to later in life. 

Everything joint related started for me in my teens, which has completely changed the trajectory of my entire life. It affected the time I started my family, stopped me from doing my dream job of being a chef, and sabotaged every job I've had to date. Its currently dictating the way I raise my son, how my Fiance can work his job, the clothes I can wear, my choice of shoes, everything. 

I can't just go on a night out with my friends without planning for several days for recovery. I spent much of my sons last birthday party on high strength painkillers just to get through the day. Just going out for a spot of retail therapy has to be a well thought out plan of attack so I don't over do it, and often requires a day in bed resting afterwards. These are just a few reasons I wish I could have delayed this to later in life. I wish I could've enjoyed a small part of my youth without thinking about how my arthritis will be affected by my every move.

These are the things that the people who make all the decisions for us don't account for. They look at the bottom line of the dollar, and what the standard says is bad, the word "prevention" is just a hypothetical to them.

For us, its not a matter of if, but when. No-one thinks about this stuff until it directly affects them. They don't know how much they treasure walking until the ability is taken from them. They don't understand the embarrassment until everyone is staring at them for just being who they are. They don't understand the mental effects until they are so far down the hole that suicide feels like the only way to feel relief, and self harm is the only way to feel some control over the pain they are in. They don't understand how it feels to be receive a "NO" to accessing the treatment that could change their lives, or give them their lives back. They don't understand how it feels to be told that the pain and discomfort they feel is "not bad enough". They don't seem understand that they could be responsible for preventing so much of this just by changing a few rules. 

Lets face it. None of us want to be on these medications. None of us want to be sick. But the thing we want least of all, given what we have to go through every single day, is to be told "you just aren't bad enough".

I'm interested in hearing your experiences on what treatments you've been turned down for, and what alternatives you were offered, please leave a comment down below (anon or otherwise always welcome) or on the private Facebook Group Here.

Thanks so much as always for reading, please feel free to share!

Millz

xx