"At least it's not CANCER!"

General Blog
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Last night I was laying in bed.....so Chemo (Methotrexate) sick I could barely lift my head....doing a lot of thinking! I have been living with PsA for 21 years now and I really think I have heard every reaction/questions a person not dealing with PsA could have. Here are just a few I get often:

"What is that?"

"Auto-Immune! That can be fixed, right?"

"Why are you Super Woman some days and bed ridden other days?"

"Oh wow you don't LOOK sick!"

"I have back pain so I understand how you feel!"

"That's not fair.....your such a good person!"

"Atleast it's not CANCER!!!"

My answers are a range of science, fact, spiritual insight, strength/weakness depending on how I'm feeling that day and I always end with "These are my cards. This is what I was dealt. Is it easy? No way! But I must live my best life ever! I am a mom, wife, sister and friend that people depend on....I can't give up! I am a fighter!"

However, lately I have been getting tired of being so freaking positive!

I have now come up some new answers....I will continue with my normal responces but decided to add this:

"Yes, atleast it's not CANCER! Cancer feels like a DEATH sentance. The thought of such aggressive treatments, losing my hair and possibally my life would be horribal! But 85% of cancer is treatable and non-reaccuring. That's actually good news, right?"

"PsA is a LIFE sentance. Every week for the rest of my life I take low grade Chemo which makes me sick. Every 4 weeks for the unforseeable future I get admitted into the hospital to sit and get poison dripped into my veins that YES I am allergic to! Every time I wash my hair I never know if it's going to fall out due to drug reactions. Daily I struggle with pain and know that there will be surgeries in my future just to try and keep me mobile. I get poked, prodded, xray'ed, mri'ed, ct'ed, blood drawn and am in a Dr's office so much it's become habit. PsA is only teatable to an extent. It will NEVER go away and it will always be a huge part of my life. SO I think I would rather it be CANCER!!!"

I know this sounds extreem but I really and at the end of my rope with peoples stupidity......Does anyone else feel this way?

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Really..ask a cancer patient. I know a few and I would not want their life. Mine is not perfect but whose life is really perfect!

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I'n not saying a cancer patients life is perfect....in fact I have had cancerous cells found and removed from a couple areas on/in my body! Removed and have not come back! Also, when my second daughter was only 1 we were admitted into Children's Hospital because the Dr's were convinced she had some form of Childhood Cancer (85% of childhood cancer is treated and is non reacurring) She ended up having a blood infection and s fine now....but every time she gets a cold I deal with fear realted to her past health issues. Oh and she is Epliptic! I know many people with cancer most are living a full live with no health issues related to the cancer. 3 of my friends/family members have passed away (1 found out way too late and it was a very agressive bladder cancer that only 5,000 people world wide have ever had and 2 were very old and chose not to go trough the surgeries and treatments)

My point is this...MOST cancer GOES AWAY!!! I have many isues related to having a very sever auto-immune disease. I have PsA. I have seizures. Horribal Digestive issues. Pollips in my colon. Colitis. Cluster Migranes that put me in the ER for atleast 24 hours. ETC! All of these health issues I manage to live with but let me tell you the knowledge that there is no way to get rid of any of them is very discouraging!

I don't want cancer...that would be rediculous! I just want this disease to have the abililty to just go away!

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Auto immune diseases stink! They are often a life sentence. I hate the phrase "at least" because it tends to demean or belittle our challenges. My son's endocrinologist (my son has type-one diabetes) said it so well, "this disease sucks." " It is for life and is in your face 24-7 with no escape." People with cancer "at least" have hope of remission and cure...a light at the end of the tunnel so to speak. Yes, this disease does not kill us, but it can kill quality of life. I totally understand your point here. Thanks for posting.

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I like your bit about explaining PsA as a life sentence and Cancer is not. I am going to try that. I try and explain it like this - You need to have a temperature, a virus or infection as that it what makes people look sick. I don't have these and it is not recognisable from just looking at me what I do suffer.

Some days are worse than others. I am not able to get out and about when I am in terrible pain so it is rare that anyone sees me except those who are close to me.

I will get you get you some information so that you can understand what it is like to have PsA and add some of the difficulties and problems you face. I do think we have to make it clear that we are not bunging it on, what it is like and that we are not looking for sympathy but we do need understanding and support.

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i guess in you are partially right. it does often seem like cancer is the death penalty while PsA is more like life in prison. without parole.

But like someone else said, i wouldnt ever ask for cancer instead. Sure having this disease sucks but it COULD be worse. and AT LEAST does apply a lot.