So you've just been hit with a ton of bricks and suddenly whatever mattered so much yesterday seems like the smallest worry in the world today; You've just been diagnosed with a chronic illness. Something is seriously wrong with you, the professionals who are supposed to have all the answers seem to know nothing and there is no easy fix to make you better. Whatever plans you thought you had made for your life are now meaningless because now you will have a hard time planning the next 6 hour period, never mind the next 6 months in advance. That job you worked so hard to move up in will now be put on hold, that is, if you are lucky enough to be able to keep it. Your friends and family will no longer be able to count on you to be there for them like you have been in the past because your condition is so unpredictable. Because you always seem to look healthy, even those closest to you may somewhere, deep down inside question how sick you really are and how much is a mere act for attention...
Now, the question is, how do you handle this? How can you begin to explain what's happening inside of you both physically and mentally when you yourself AND your doctors don't even know for sure? Is your boss thinking you're faking just to get a pay cheque to stay home? Is your spouse really thinking you're just lazy when they get home from work and you're laying on the couch... again... when there is a pile of laundry to do and a home to be vacuumed? Are your friends talking about you behind your back and judging you because you keep cancelling on plans because you're just not up to going out anymore due to the pain and fatigue that now consumes you 24/7? Is my family gossiping about me, using me as a piece of juicy news to gain sympathy for themselves when I am the one dealing with this alone? Will I ever be able to be a parent and have healthy children, and if so, will I even be able to take care of them? Does my partner want to leave me because I am now considered a burden, this isn't what they signed up for...
STOP.
Although all of those scenarios may very well be happening, in my experience, the only way to gain control of what others are thinking is to clarify the situation for them one by one. If we are confused and in the dark about what our own body is going through daily with our own chronic illness, can you imagine how lost other outsiders can be? It is our job to:
1- Fill them in with accurate information about our disease and how it impacts us personally
2- Manage their expectations of us now considering all the factors that may change throughout the day
3- Accept help when it is offered and ask when help is needed so they feel involved in our healing process and not shut out. (This was so hard for me to do as a very independent person)
4- Keep them aware of the game plan to show them that you are working towards a positive outcome and not becoming a victim to your disease.
(Naturally, people are entitled to their opinions and some may think whatever they want to regardless of what you say or do, however the ones that count will usually respond well and appreciate the above 4 steps)
Another thing to keep in mind is how the ones close to us are feeling. Often times we are so focused on our own emotions that we can dismiss the feelings of our partners, family and friends. We can also misinterpret an indifferent response or behavior as a careless one when it can actually be quite the opposite. I know my boyfriend really thinks the world of me, but when it comes to my condition, he gets a little tongue tied. He asks me every day how I am feeling and how I am doing, but it doesn't get much more detailed than that. It is only when really serious things happen that I see him break down. At first I took his stone face for indifference, but after reflecting on it, I realized that he is trying to be strong for me. If he were to show his emotions every time I had a bad flare or a scary symptom come up, it would probably freak me out even more and nothing good would come of that. I know deep down he is very scared about all the possibilities that can come from me being chronically ill, my shorter life span, risks of seizures and complications, risks with childbirth, etc. and I can only imagine how heavy it is for him to carry all of this on his heart just because he doesn't want me to be worrying about him on top of everything else. The same applies for our family and friends, they are worrying even if they aren't showing it and sometimes that cold indifference is their defense mechanism put up to protect US. Make sure you think to ask your close ones how they are feeling about you being sick from time to time too.
It took me a really long time to learn to open up and tell my family and then friends what was going on with me because I didn't want to be a burden and worry them when they had other things to worry about in life. Ultimately, they just got mad and frustrated with me because I wasn't being honest and they worried even more. When I flipped the scenario and imagined it being my sister keeping this from me, or even a friend, I realized I would want to know 100% of what was going on so I could offer my support and encouragement and be there if ever I was needed, that's who I am. Realizing this, I slowly worked on changing my ways and sharing my daily struggles with my inner circles more and more, it was only fair of me to offer them the chance to give back and take care of me like I would them. Talking about things and letting the stress out is very therapeutic and I have been able to connect with many people because of my choice to share this part of my life with everyone.
So, what are your stories? Was it easy for you to tell everyone you were sick? Is it still a secret?
Monday, 25 February 2013
Thursday, 7 February 2013
The Tipping Point- When to take the next step with Meds
I am at a crossroads concerning my medications at this point. As I had mentioned in my first post, I am looking at immunosuppressant therapy as my next option as the initial treatments have all failed thus far. I have really been postponing starting these medications because of the negative side effects associated with them.
When I approached the one and only Behcet's specialist at the NYU Langone Medical Center, Dr. Yusuf Yazici, about my fears, he made a valid point. Why wait until the damage on my body is irreparable to start the next steps of treatment? We know it is worsening and we should act accordingly and not let it strengthen anymore.
I feel like I have been telling myself I am not THAT bad yet, I can wait it out and see if I improve naturally with what I am doing now for so long... I think a big part of it is also, what if this also fails... then what?
I am so tired of failure being associated to me.
What will my tipping point be? When will I be ready to take the chance to possibly save my health or ruin it even more? I can't say I have that answer yet.
When I approached the one and only Behcet's specialist at the NYU Langone Medical Center, Dr. Yusuf Yazici, about my fears, he made a valid point. Why wait until the damage on my body is irreparable to start the next steps of treatment? We know it is worsening and we should act accordingly and not let it strengthen anymore.
I feel like I have been telling myself I am not THAT bad yet, I can wait it out and see if I improve naturally with what I am doing now for so long... I think a big part of it is also, what if this also fails... then what?
What will my tipping point be? When will I be ready to take the chance to possibly save my health or ruin it even more? I can't say I have that answer yet.
The Purpose
Hello Readers,
My name is Shayna and I am a chronically ill patient. I was diagnosed with Behcet's disease in April 2011 after a month of being sick with flu like symptoms and the development of a genital ulcer. I was a very healthy and active individual my entire life, only with the occasional migraine, stomach pain and constipation, skin problems, weak ankles and wrists and some nausea but who doesn't experience these things at some point in their lives? I never, ever thought that one day all of these little things would end up being clues to what the future would hold for me. My disease is extremely rare in North America and the UK, most doctors have never seen it in their time practicing. There is no known cause, there is no cure and I am expecting to have this for my lifetime. I am also expecting this disease to reduce my lifetime significantly.
Behcet's is classified as an autoimmune disease as well as a type of systemic vasculitis, meaning inflammation in the blood vessels, and since we have veins and arteries everywhere in our bodies, every single part of my body can be affected by my disease. If you look up Behcet's online, you will constantly come upon this 'Triad' of symptoms description which mentions ulcers, eye involvement and thrombosis in the veins. I luckily haven't had too much eye involvement so far in my journey, nor thrombosis, however I had gone through pretty much everything else in the 2 years I have been fighting it. My daily struggles involve arthritis pain in my joints; hands, wrists, knees, hips, ankles, back and neck, etc, GI troubles of all sorts, headaches of varying degrees from regular tension to aseptic meningitis, chronic fatigue, random heart palpitations, skin rashes and lesions, mouth ulcers and luckily only ever two genital ulcers, memory loss, confusion, organ pains (liver, gall bladder, spleen) nausea and vomiting and always generalized pain and then I will have the odd periods where I will get days with phantom smells, seizures of different sorts, black outs, numb limbs, random falling, extreme pain and sensitivity, leaking nose, inflamed joints lasting 2 months, my ear will stop working, eye pains lasting 3 days, etc. I am sure I am forgetting things. My life is literally like a list of possible bad side effects on those USA medication commercials every day.
I am presently taking about 16-20 pills a day just to stay afloat and these are all the things that still happen despite all this medication. If I didn't take the pills, things would be way worse (I have tried!). I am planning on moving to the next step of treatment which is immunosuppresion, where they will shut off part of my immune system so that it will stop attacking my body and wait and see if it will improve the situation. Unfortunately this puts me at risk to catch many other illnesses and also sadly raises my chances of getting cancer later in life to an alarming rate. At this point, I don't really have a choice. If these forms of medication don't work, then we will turn to chemotherapy.
Now that you have a brief idea of what I have and how I live, I can finally get to the reason why I decided to blog about it. Naturally when a person becomes ill, the first thing they do is research to gather the most information they can on what they have, what to expect and how to get better. After two years, I am still researching, still exploring, still looking for ways to get better, and ironically I am just getting worse and worse despite the more knowledge I have. Either way, I wanted to make a place for people to go to ask questions and find truth in experience after being diagnosed. The websites I was able to find were very dry, very to the point and more importantly, inaccurate. They did not prepare me at all for the journey I have been on over the last two years. I was expecting eye drops and blindness and instead I am now looking at losing my license because of seizures and organ failure. There is nothing online linking Behcet's Disease with this! How could I have possibly been prepared for this life?
The way I have survived through this challenging time is with the help of my social media groups on Facebook and now recently Instagram. These amazing groups have shown me that I am 'normal' even though it is now among a much small group of special individuals. Being able to simply type a question on Facebook after something terrifying happened to me and having 10 people respond, "yes, you're fine, the same thing happened to me. Here's what you should do. Stay strong." meant the absolute world to me. THIS is where I found my true knowledge, this is how to prepare for real life. Not Pubmed and Wiki articles some doctor or student wrote without ever living with the disease. These people are the experts, the professionals to turn to when you're having the worst flare, when you need advice, when you're unsure about a medication your doctor just prescribed, a side effect, a test result. They are the therapist I needed on my worst day because they've been through the ups and the downs too. When they ask 'how does that make you feel?', they actually want to know because they can compare it to their personal life story. Your friends and family can be by your side and support you, but there is nothing more comforting than the understanding of someone who is going through the same struggle along side you.
This is why I want to start this blog. I want to and NEED to give back in a way that will touch, inspire and help people like I have been helped. I honestly don't know what I would have done without the human contact and the realness of it all. I want to share my story with my fellow 'spoonies', fighters, strugglers and survivors and maybe even open the eyes of those who wouldn't have a clue what this Invisible Illness is all about. This blog is about spreading awareness for all of us, sharing information, telling stories, discussing successes and failures, encouraging smiles and positive attitudes in the hardest of times to try and help us beat whatever it is that is trying to take us down. Not everyday will be a happy one here, that's just not reality, but I will try my best to keep the balance.
I really appreciate you reading my blog and becoming a part of my journey. This is my first time writing a blog so bear with me while I figure out how this thing works :) This particular post was intense and slightly depressing and I promise you not all of my posts will be this way. I wanted to get all the facts on the table, clear the air and start fresh. Let's go!
-Shayna
http://en.wikipedia.org/wiki/Beh%C3%A7et's_disease
My name is Shayna and I am a chronically ill patient. I was diagnosed with Behcet's disease in April 2011 after a month of being sick with flu like symptoms and the development of a genital ulcer. I was a very healthy and active individual my entire life, only with the occasional migraine, stomach pain and constipation, skin problems, weak ankles and wrists and some nausea but who doesn't experience these things at some point in their lives? I never, ever thought that one day all of these little things would end up being clues to what the future would hold for me. My disease is extremely rare in North America and the UK, most doctors have never seen it in their time practicing. There is no known cause, there is no cure and I am expecting to have this for my lifetime. I am also expecting this disease to reduce my lifetime significantly.
Behcet's is classified as an autoimmune disease as well as a type of systemic vasculitis, meaning inflammation in the blood vessels, and since we have veins and arteries everywhere in our bodies, every single part of my body can be affected by my disease. If you look up Behcet's online, you will constantly come upon this 'Triad' of symptoms description which mentions ulcers, eye involvement and thrombosis in the veins. I luckily haven't had too much eye involvement so far in my journey, nor thrombosis, however I had gone through pretty much everything else in the 2 years I have been fighting it. My daily struggles involve arthritis pain in my joints; hands, wrists, knees, hips, ankles, back and neck, etc, GI troubles of all sorts, headaches of varying degrees from regular tension to aseptic meningitis, chronic fatigue, random heart palpitations, skin rashes and lesions, mouth ulcers and luckily only ever two genital ulcers, memory loss, confusion, organ pains (liver, gall bladder, spleen) nausea and vomiting and always generalized pain and then I will have the odd periods where I will get days with phantom smells, seizures of different sorts, black outs, numb limbs, random falling, extreme pain and sensitivity, leaking nose, inflamed joints lasting 2 months, my ear will stop working, eye pains lasting 3 days, etc. I am sure I am forgetting things. My life is literally like a list of possible bad side effects on those USA medication commercials every day.
I am presently taking about 16-20 pills a day just to stay afloat and these are all the things that still happen despite all this medication. If I didn't take the pills, things would be way worse (I have tried!). I am planning on moving to the next step of treatment which is immunosuppresion, where they will shut off part of my immune system so that it will stop attacking my body and wait and see if it will improve the situation. Unfortunately this puts me at risk to catch many other illnesses and also sadly raises my chances of getting cancer later in life to an alarming rate. At this point, I don't really have a choice. If these forms of medication don't work, then we will turn to chemotherapy.
Now that you have a brief idea of what I have and how I live, I can finally get to the reason why I decided to blog about it. Naturally when a person becomes ill, the first thing they do is research to gather the most information they can on what they have, what to expect and how to get better. After two years, I am still researching, still exploring, still looking for ways to get better, and ironically I am just getting worse and worse despite the more knowledge I have. Either way, I wanted to make a place for people to go to ask questions and find truth in experience after being diagnosed. The websites I was able to find were very dry, very to the point and more importantly, inaccurate. They did not prepare me at all for the journey I have been on over the last two years. I was expecting eye drops and blindness and instead I am now looking at losing my license because of seizures and organ failure. There is nothing online linking Behcet's Disease with this! How could I have possibly been prepared for this life?
The way I have survived through this challenging time is with the help of my social media groups on Facebook and now recently Instagram. These amazing groups have shown me that I am 'normal' even though it is now among a much small group of special individuals. Being able to simply type a question on Facebook after something terrifying happened to me and having 10 people respond, "yes, you're fine, the same thing happened to me. Here's what you should do. Stay strong." meant the absolute world to me. THIS is where I found my true knowledge, this is how to prepare for real life. Not Pubmed and Wiki articles some doctor or student wrote without ever living with the disease. These people are the experts, the professionals to turn to when you're having the worst flare, when you need advice, when you're unsure about a medication your doctor just prescribed, a side effect, a test result. They are the therapist I needed on my worst day because they've been through the ups and the downs too. When they ask 'how does that make you feel?', they actually want to know because they can compare it to their personal life story. Your friends and family can be by your side and support you, but there is nothing more comforting than the understanding of someone who is going through the same struggle along side you.
This is why I want to start this blog. I want to and NEED to give back in a way that will touch, inspire and help people like I have been helped. I honestly don't know what I would have done without the human contact and the realness of it all. I want to share my story with my fellow 'spoonies', fighters, strugglers and survivors and maybe even open the eyes of those who wouldn't have a clue what this Invisible Illness is all about. This blog is about spreading awareness for all of us, sharing information, telling stories, discussing successes and failures, encouraging smiles and positive attitudes in the hardest of times to try and help us beat whatever it is that is trying to take us down. Not everyday will be a happy one here, that's just not reality, but I will try my best to keep the balance.
I really appreciate you reading my blog and becoming a part of my journey. This is my first time writing a blog so bear with me while I figure out how this thing works :) This particular post was intense and slightly depressing and I promise you not all of my posts will be this way. I wanted to get all the facts on the table, clear the air and start fresh. Let's go!
-Shayna
http://en.wikipedia.org/wiki/Beh%C3%A7et's_disease
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