It seems so strange that I haven’t written about this before that I feel a little foolish for leaving it so long.
Since my intention for writing Autoimmunitygirl was always to educate and share the challenges of Autoimmune illnesses and life, a big, NO HUGE, part of those challenges are the medications and drugs.
DRUGS! YEP! They can be a big part of the journey and yet they are SO misunderstood by those who have no idea what we deal with. There are a lot of reasons for this I guess but the most common reason seems to be lack of information. So here goes.
Once you have been diagnosed and depending on your disease/s activity (the amount of symptoms, the severity of the symptoms and the frequency of them) then your specialists will start talking about treatments for your disease/s.
Because Autoimmune diseases are best described as your own immune system attacking itself, the main treatments involve controlling the immune response inside your body, trying to stop the crazy immune cells the body is making and treating the resulting inflammation where the cells are being sent (bones, organs, brain, etc).
It is important that I stress this here and now. THERE IS NO CURRENT CURE FOR AUTOIMMUNE DISEASE. True! Ask a doctor!! Some find that with various methods ie drugs, change of diet, lowering stress on the body etc that some people have successfully achieved remission. Remission is where you are affectively managed to control or slow your disease activity so that it is not actively causing damage or symptoms but you are NOT cured of the disease. For example, you are not MS free or RA free or Crohns FREE. For anyone with an Autoimmune disease/s that is the holy grail that we all seek! Remission! Remission means you can have some of your life back and you don’t have to fight some terrible pain and a myriad of other issues.
Sometimes, depending on how early your Autoimmune disease is diagnosed and treated, you can in fact achieve remission, but sometimes you may have a progressive type of AI or a systemic (present throughout your body) and it becomes very, very difficult to treat or slow down, in fact it may be impossible.
Back to the drugs.
The most common forms of drugs we get are for coping with pain. (NSAIDs, tramadol, targin, valium, Oxycontin, Morphine etc)
Other drugs are aimed at reducing swelling and inflamation. Cortisone steriods. (Prednisone, prednisolone).
Drugs for controlling the body from MAKING these immune cells called immunosuppressants (ie. DMAD, DMARDS, biologic interferon etc).
And Chemotherapy drugs aimed at wiping out all these naughty ‘assassin’ blood cells.
Sometimes, if you are like me, you have a little from column A, B, C and D.
There are also IVIg and Plasma Exchange treatments… but I wont go there now.
The point I am trying to illustrate is that there are several main drug types that are used to help you in the fight against what is happening inside you. BUT. There is ALWAYS a BUT. They come with very, very difficult side effects and a load of problems and complications. The most obvious one is that your immune system is getting wiped out and you are an open target for any infection, bug, germ, illness and bacteria that is out there. The walls are down. You are completely exposed which makes everything a potential risk. And I mean EVERYTHING.
Your cold can be my pneumonia. Your scratch can be my several weeks on IV antibiotics. Your stomach bug can be my bowel resection. Your nasty virus can be my early death (at the extreme case).
So why do we do it? Because we want a shot at a ‘normal’ life. For a chance of pain relief. So we can slow down what is happening inside us. So we can feel normal again. Because there is no cure. Because there is no end to the possible destruction that the body can cause.
Currently every part of my body from my hair, skin, brain, eyes….all the way down to my toes is affected. So I personally do as much as I can to fight.
I take the drugs, I eat healthily, I stopped smoking, I don’t drink, I don’t eat red meat. I eat low Gluten and low Dairy. I take supplements. I have tried every ‘cure’ in the book (and on the internet). I have tried to exercise. You name it, I have tried it!
I warrant everyone anyone, ANYONE, who has been diagnosed with an Autoimmune disease or diseases has tried a combo of them all with varying levels of success. But what hurts the most. What really breaks my heart and hits harder than all the drugs and side effects combined is when someone who doesn’t know me, hasn’t spent a day with me, Is NOT a doctor, has NO clue about my illnesses and what I live with, will say something cruel, ignorant or intended to demean or doubt me and what I go through. I have learned to block them out over time and tell myself that it is THEIR ignorance and not me.
But then again, if it wasn’t for the lack of knowledge, misinformation, ignorance and prejudice out there in the world than there would be no Autoimmunitygirl and I would not have found so many wonderful people who relate and understand exactly what I go through. I have made such friendships along the way that I would never have been able to under different circumstances.
My life and I have been changed forever… I have a completely different perception of life and myself that I would never have achieved if it wasn’t for these diseases. I guess you can say it really is a blessing and a curse.
#You can read more about Autoimmune drugs on the Home page of Autoimmunitygirl.com
One thought on “What’s Your Poison? – #drugs #treatment #choices #therapy #Autoimmune #education #information”
And to add it ticks me off that people look at me on the surface but don’t see that I struggled to get out of bed, take a shower, drive, get groceries etc and I know they’re thinking she doesn’t look sick 😡