Thursday, March 15, 2012

My Heart Breaks For My Behcet's Friends...

Today is one of those days that my heart is breaking for my Behcet's friends and family. Even though we are not blood related, they are my family. These people have a special place in my heart. Only another BD'er can understand what this horrible disease can do to your life.

What effect it has on your relationships. Your love life. Your children. Your friendships.

What effect it has on your mental state. Your emotional state. Your physical state.

Picture you going through life as you planned or not as planned- some people planned their careers, other have not. You may have started your career when this disease has hit you, you may have not, you may have been fifteen years into your career. Either way you are stopped dead in your tracks.

For me I was six years into my LPN nursing career. I was on my way to my RN and was eventually headed for my nurse practitioner in family practice. My only hope is a cure, remission, or finding medication that makes my symptoms disappear. None of the three likely to happen any time soon but I still keep a small ray of hope alive somewhere in me.

Now picture your significant other wondering what is going on with you. For some of us, we've been together many years, while other not so many. Think about what they see- they see you becoming a fraction of what you use to be. You can no longer go out and do things like before. There is no more going to do a walk along the beach, then a picnic, then a movie, then a dinner, and then a little oh-la-la! You have to pick one. Just one. If you're lucky you might be able to manage two. But with two there's definitely a price you'll pay.Then there's the sex issue. Sex itself will throw you into a flare up. Not to mention it will make your body feel like it's been beaten and bruised. You may be accused of cheating, your marriage in ruins. I am one of the lucky ones in this department. Don't get me wrong, it does throw me into a flare up, but we've learned to work around it. I say I'm lucky because I have never been accused of cheating or ever been on the verge of breaking up due to this horrible disease. I talk about this because people need to understand the toll this disease takes on people's marriage. It is a very real issue and not every man or woman is understanding. Supposidly sex and money are the top two thing couples fight about the most in relationships, now Behcet's is fuel to the fire. Can you imagine what that's like?  I'll bet you're trying to, aren't you? :)

What about the people with children you ask? How do you think they feel? I can only give you an idea because I don't have kids myself. I know they feel terrible. But guess what? They SHOULDN'T!!! Nobody asks for this disease. Nobody. Kids are more understanding than we give them credit for. They will get it. Even if they don't now, they will when they are older. We do have Jason's 12 year old brother living with us. His name is Jacob. Mentally he's like a 10 year old. He's enough to handle and then some. He has way too much energy but what kid doesn't, right? Can't imagine what it's like having younger kids in the house and dealing with this disease. Or more than one kid. Kudos to those who do it! How do I handle it when Jacob ask me to do something and I feel like total poo? I just have to remind him I am sick and cannot do anything. Some days he really gets it and can be very caring, other days he's just a kid and doesn't understand. A lot of the times we do indoor activities. We have movie weekends. I'm getting him to be a movie junkie like me. I'm sure a lot of you know what I mean when I say that, right? Not much you can do about it other than wait for them to grow up and hope they really do understand.

Guilt of friendships and family outings. This is definitely one of the hardest for me, especially the family outings. Since I've gotten sick, I've missed some get-togethers with family and friends. Christmas Eve this last year at my grandmothers was particularly difficult for me to miss. Even if I wanted to go, I would've slept the whole time I was there. I looked like death that day. And that's an understatement. What kind of company would that have been? Not to mention it would've scared the shit out of my family. Most of them haven't seen me when I'm this bad. How do I handle this? I've learned to not let what people think about me get to me since getting sick. I have enough on my plate. People can either understand or they don't. If they can't understand, then they aren't good enough to be in my life from here on out. I find family seems to understand a lot better than friends. And if they are really my friends, then they can understand I can't make plans and can only do things spur of the moment. Or they can come visit me and I may not be able to get out of bed that day, but at least we can talk.

If it's not bad enough we have problems in every aspect of our lives once this disease hits, our health is put into the hands of medical professionals who sometimes have compassion and sometimes of those who don't. Most of them don't even know what the hell Behcet's is. I hate when I have to read stories about my fellow BD'ers being treated like drugs seekers. My heart just breaks for them. Do they think anyone wants something like this? Do they think anyone wants to wake up some day and say I want to feel like a 200 year old lady who was hit by a semi-truck, who can't feel her feet, who gets mouth ulcers, who gets migraines on a daily basis, who can't walk up stairs because of the pain, who gets genital ulcers, who gets numbness/tingling in her face that last for months, who wants to be on narcotics for the rest of her life? The correct answers health care providers is: NO! With that being said, I get that there are drug seekers out there. I deal with them at work. But you also need to understand that there are legit people out there that depend on this medication and without, we are FUCKED. Sometimes I wish that those who treat my fellow BD'ers like this would get this disease. Yea, I know, horrible, isn't it? Well, walk a mile in our shoes and maybe you'd see where we're coming from.

I wasn't sure if I should put this paragraph in but the more I think about the more I want to so people can understand what it can be like. At some point I will go into more detail with my provider struggles. Thankfully I have finally found a team of providers that is compassionate and willing to help me and work with me on medications and willing to give me a chance and the option to choose.
The first two rheumatologist told me there were no other medications to treat this disease other than prednisone and colcrys due to my reactions to these two medications. How wrong they were. I am so happy I found Dr. Grandits and she gave me the option to try other medications. A list of 14 in fact. It is my choice to try the medications even if I am sensitive to medications, it is still MY choice. Did you hear that Dr. Medina and Dr. Fazeli? My Choice. As for my pain, I thank God for Chris (full name will not be given for her privacy) and her understanding. She is a blessing in disguise. She is what every provider should be like. She listens and is there for her patients. She truly cares, which is a rare find in a provider. She works with me on my medications. And no, I will not give you her name or number. Sorry. My neurologist, Dr. Evans, I have seen only once but also seems to genuinely care. I hope that our relationship continues down the path my other provider relationships have because then I can say I really do have a wonderful team working with me to help conquer this horrible disease.

I'm finding it very hard to end this posting on a positive note because there are so many sorrows in this post. For many of us the struggle is long, hard, and life long. Eventually most of us find a good health care team, but a lot of us are still struggling even years after being diagnosed. Years pass, we meet more Behcet family and friends thanks to social media. Thankfully, it is this support along with the support of family, friends, significant others that make the moments more bearable.

"Never underestimate the pain of a person. In all honesty, everyone is struggling. Just some people are better at hiding it than others." Unknown

6 comments:

  1. Wow a lot hit home....
    I am a teenager .. So not all...
    I have been blessed with one friend who is like an angel
    I will never forget around November last year
    we planned to have a sleepover at her house
    on a Friday
    then they day before I woke up with a mouthful of Ulcers where I could hardly talk and she understood
    and we planned for next Friday
    then I had to Genital Ulcers
    so needless to say it killed me to walk
    so I had to call her again but next Friday I had a CATA scan
    so my mom told be I could ask her if she wanted to spend Thursday night and go with me to it
    so I did and she said she could
    and that only if I really wanted her to come
    so I ended up with a sore throat because of ulcers again
    but she still came and we had snack stuff and Fuze drinks :) stayed up just a little and talked
    then the next day we left for my doctors to have The CATA scan and while they were putting the needle/tube thing on for the dyes to enter while they did the scan
    I passed out ( thankful she was in the waiting room because it even freaked out the guy who was doing it)
    then The dyes made me feel sick so not that much fun afterwards.. We had lunch then mom wanted to go to some stores so she sat in the car with me
    and we talked mainly her since I was not feeling so good
    and she reasured me that we would always be BFFL and she would always be there even when I didn't want anybody and she has for the last 8 1/2 years so she has seen all my ups and downs on trying to find out what I have and going through meds
    She is like a sister to me
    she always listens and trys to comfort and knows I am not lying to her to not hang out
    But Christ is our center <3
    hope this was not to long....
    #16withBD
    :)<3<><

    ReplyDelete
  2. Thank you for your ability and courage to share what most of us go through. Hugs, Light and Love being sent to you as I type! Barb S.

    ReplyDelete
  3. I loved this post and reminded me of when I was going through my infertility journey. I quickly learned you can never judge anyone as you have no idea what they are going through in their life.

    ReplyDelete
  4. Hi All , including our generous host of this wonderful blog,

    I live in Ireland, am a fellow Bechet's Suffrer. I am a mum of four young kids, very, very active kids and have a husband, who is a saint, and without whom, I dare not consider how much worse my life would be.

    It is a week to Hallowe'en, so, it's that time of the year when I get my major flare!!!! We are talking major, and it is the only predictable thing about my Bechet's! The weather changes, I get an infection and my whole body reacts! However, becasue of the immune suppressant I am on, I don't a message about the infection's prsence iin my body until is really well established. An example of this was this time last year I ended up in hospital with atypical pneumonia; year before, I had uro-sepsis, and now, pattern repeating yet again, I am currently sitting up in bed, with a swollen face that looks like I have been blown up with a canister of helium, hands puffed up and can't put my right foot to the ground (because of talo-navicular joint inflammation); I have a mouth, tongue, gums and throat full of ulcerations (throat is just a dandy for helping you shed a few pounds, from inability to swallow hot liquids or any solids), ulcerations on arms, legs, privates, in my eyes, migraine and I think I may have a kidney infection - I know I should go get checked out, as advised by my GP, but I have had to made the decision to stay at home, because my son needs me.

    Is this irresponsible? He is doing a series of tests in a week which will determine which school he will get into for the next seven years (11-18yrs old). I am his mum and I have to be here to support him and keep his life stable, secure and calm right now. If I end up in hospital, then he will fret and worry and it may transfer negatively into is test performance and all because of this shitty disease.

    This is today's decision - other days the decisions are of less importance. However, every day, to varying degrees significant, I feel like a shadow of the former me. I never feel like I am a good enough mum or wife anymore, and I'm not going to start on the guilt about not being an equal contributor to the family finances as I had before!

    When inflammation in the brain is at its worse, those are the worst days, as I feel unable to communicate properly with my family; sometimes I really struggle to explain homework problems with the children, and I used to be a teacher, for goodness sake!! I just want the old me back; I just want to be normal.

    The multi-tasking, professional, self sufficient woman, with drive and passion, fun and laughter has had a huge blanket thrown over her and sometimes it feels very dark and lonely under the covers.

    And yet, although sad and a bit pathetic at times, I never give up. I will sometimes look back with a little nostalgia and a longing to travel back in time. My husband and eldest son are the only ones in my little family who remember me as I was, pre-Bechet's; my other three children have only known the faulty model. That's a shame, but it's who I am now and who we as a family work with.

    My family love me, as I am now, and that makes me the luckiest person in the world.

    Barbara (from blustery, squaly Ireland)

    ReplyDelete
  5. Hi All , including our generous host of this wonderful blog,

    I live in Ireland, am a fellow Bechet's Suffrer. I am a mum of four young kids, very, very active kids and have a husband, who is a saint, and without whom, I dare not consider how much worse my life would be.

    It is a week to Hallowe'en, so, it's that time of the year when I get my major flare!!!! We are talking major, and it is the only predictable thing about my Bechet's! The weather changes, I get an infection and my whole body reacts! However, becasue of the immune suppressant I am on, I don't a message about the infection's prsence iin my body until is really well established. An example of this was this time last year I ended up in hospital with atypical pneumonia; year before, I had uro-sepsis, and now, pattern repeating yet again, I am currently sitting up in bed, with a swollen face that looks like I have been blown up with a canister of helium, hands puffed up and can't put my right foot to the ground (because of talo-navicular joint inflammation); I have a mouth, tongue, gums and throat full of ulcerations (throat is just a dandy for helping you shed a few pounds, from inability to swallow hot liquids or any solids), ulcerations on arms, legs, privates, in my eyes, migraine and I think I may have a kidney infection - I know I should go get checked out, as advised by my GP, but I have had to made the decision to stay at home, because my son needs me.

    Is this irresponsible? He is doing a series of tests in a week which will determine which school he will get into for the next seven years (11-18yrs old). I am his mum and I have to be here to support him and keep his life stable, secure and calm right now. If I end up in hospital, then he will fret and worry and it may transfer negatively into is test performance and all because of this shitty disease.

    This is today's decision - other days the decisions are of less importance. However, every day, to varying degrees significant, I feel like a shadow of the former me. I never feel like I am a good enough mum or wife anymore, and I'm not going to start on the guilt about not being an equal contributor to the family finances as I had before!

    When inflammation in the brain is at its worse, those are the worst days, as I feel unable to communicate properly with my family; sometimes I really struggle to explain homework problems with the children, and I used to be a teacher, for goodness sake!! I just want the old me back; I just want to be normal.

    The multi-tasking, professional, self sufficient woman, with drive and passion, fun and laughter has had a huge blanket thrown over her and sometimes it feels very dark and lonely under the covers.

    And yet, although sad and a bit pathetic at times, I never give up. I will sometimes look back with a little nostalgia and a longing to travel back in time. My husband and eldest son are the only ones in my little family who remember me as I was, pre-Bechet's; my other three children have only known the faulty model. That's a shame, but it's who I am now and who we as a family work with.

    My family love me, as I am now, and that makes me the luckiest person in the world.

    Barbara (from blustery, squaly Ireland)

    ReplyDelete
  6. Hi All , including our generous host of this wonderful blog,

    I live in Ireland, am a fellow Bechet's Suffrer. I am a mum of four young kids, very, very active kids and have a husband, who is a saint, and without whom, I dare not consider how much worse my life would be.

    It is a week to Hallowe'en, so, it's that time of the year when I get my major flare!!!! We are talking major, and it is the only predictable thing about my Bechet's! The weather changes, I get an infection and my whole body reacts! However, becasue of the immune suppressant I am on, I don't a message about the infection's prsence iin my body until is really well established. An example of this was this time last year I ended up in hospital with atypical pneumonia; year before, I had uro-sepsis, and now, pattern repeating yet again, I am currently sitting up in bed, with a swollen face that looks like I have been blown up with a canister of helium, hands puffed up and can't put my right foot to the ground (because of talo-navicular joint inflammation); I have a mouth, tongue, gums and throat full of ulcerations (throat is just a dandy for helping you shed a few pounds, from inability to swallow hot liquids or any solids), ulcerations on arms, legs, privates, in my eyes, migraine and I think I may have a kidney infection - I know I should go get checked out, as advised by my GP, but I have had to made the decision to stay at home, because my son needs me.

    Is this irresponsible? He is doing a series of tests in a week which will determine which school he will get into for the next seven years (11-18yrs old). I am his mum and I have to be here to support him and keep his life stable, secure and calm right now. If I end up in hospital, then he will fret and worry and it may transfer negatively into is test performance and all because of this shitty disease.

    This is today's decision - other days the decisions are of less importance. However, every day, to varying degrees significant, I feel like a shadow of the former me. I never feel like I am a good enough mum or wife anymore, and I'm not going to start on the guilt about not being an equal contributor to the family finances as I had before!

    When inflammation in the brain is at its worse, those are the worst days, as I feel unable to communicate properly with my family; sometimes I really struggle to explain homework problems with the children, and I used to be a teacher, for goodness sake!! I just want the old me back; I just want to be normal.

    The multi-tasking, professional, self sufficient woman, with drive and passion, fun and laughter has had a huge blanket thrown over her and sometimes it feels very dark and lonely under the covers.

    And yet, although sad and a bit pathetic at times, I never give up. I will sometimes look back with a little nostalgia and a longing to travel back in time. My husband and eldest son are the only ones in my little family who remember me as I was, pre-Bechet's; my other three children have only known the faulty model. That's a shame, but it's who I am now and who we as a family work with.

    My family love me, as I am now, and that makes me the luckiest person in the world.

    Barbara (from blustery, squaly Ireland)

    ReplyDelete