encouragement to fight harder.....

Ok.....so I have been really struggling lately.....lots of family things going on and lets just say...wow...just so much stress and the feeling of failure at every road I turn to....I have been busting my butt to try to make sure all my kids are taken care of not only at my house but their other parents houses too....which is STRESSFUL to say the least....We have had a few problems at school....I'm not a teacher nor a guidance person...so I feel as if I fail every time I try to help with this aspect of life....I have been dealing with swollen tonsils for almost two months now.....my derm and I had decided to bump my Remicade out to 8 weeks...lol...what were we thinking...with all this stress and sickness and winter = no playing in the sunlight.....it was a bad time to try this move....and WHAM....my psoriasis is back....there are little bumps all over me...I can see the pattern forming....I can see where if I weren't on my Remicade or it stopped working for me...I would be back in that dark place of being completely covered....this time though it started on my face...around my mouth of all places...I did look a bit funny with psoriasis around my mouth...this has started to subside some but my whole body is now involved....it is even in my belly button...ewww...what...why is that....My wonderful Fred laughs at me....he says...and I quote.....I have no clue how you dealt with being completely covered...you have like 2% coverage right now and you cant stop complaining and scratching...lol.....then I remind him...that I had it crazy bad for 14 years...I was used to the itching and pain....I have been 100% clear for over 7 months.....so this is like me getting psoriasis all over again.....not to mention my joint are so painful and sooooo swollen....it hurts to walk right now....but I will get through it....I have a lot going for me in life and I will overcome this...........

so now for the bad news........... :-( .......(yes I'm crying).....

my oldest daughter Carley has been diagnosed with psoriasis.......most of you know I not only fight for me but I fight because I knew in the back of my mind that at least one of my children would have to fight too.....I kinda always thought it would be Carley....for those of you that have met our unFOEgettable family, yall know she looks just like me...she really is a true mini me...same blood type...same skin type and tone....just really same everything....well a few weeks ago we noticed a spot on her left elbow.....The minute I looked at it I knew....my heart sank...but then my head took over....It is only a rash or a little dry skin from the winter is what I had convinced myself of........we kept lotion on it....and when she kept complaining about how bad it itched and I saw her scratching all the time...I knew it was time to go see a derm....just so happens that the derm that saved my life also is a pedi derm.....so yesterday I had an apt to get my stuff ready for another infusion so he said he could see her then too....so off we go....I knew what was going to be said but......it didn't hit me until the doctor said it......Tears rolled down my face....my derm looked at me and gave me the look i needed....to me his look said it all....i understand....I'm sorry...and be strong.......i cleared my tears but as he sat there and talked to Carley about how it wasn't her fault...it wasn't my fault...and how he could touch her psoriasis all day long and never get it from her.....he explained she didn't get it from touching mommy...that its just something that happens in life and it makes her more special...i couldn't help but to shed some more tears.......If i had heard that when I was first diagnosed and knew what she knows i think i could have dealt better as a teen....the doctor let the room and i flew into mommy mode....just changing the subject and making this a fun visit for her.....all the while my heart was hurting so bad for her.....while right now she has only one spot i fear for the full coverage like i have experienced.....i don't want her to go through it....my head knows the difference but my heart aches because I blame myself for her having to deal with this.....we continued our day by going out to eat for lunch....then we had to go to the bank......Fred and I have been texting all through this day and he has been awesome to show his love and support....i get a text saying don't worry too much about it because Carley is strong she is just like me and that she will be even stronger because she has been helping fight my battle already....and that life isn't always what we want to happen...it is what we make it.....and to tell Carley he loves her.....that broke me down....i cried and cried...Carley looks and me and asked....mommy why are you so sad and crying...and i told her because i was sad for everything she had seen me go through and that i was sad that now she had psoriasis....she holds my face and says...mommy kisses...(which to us is Eskimo kisses)....she said ok all better, that always make me all better.....so i sucked it up letting her think she made me all better......

I just don't get it.......why do our kids have to deal with this.....why cant we find a cure....I'm just so pissed( excuse the language)......how many more people have to suffer for the rest of their lives for someone to do something real about this....Mike you are right.....this is a very unwelcome encouragement...but it is encouragement none the less....this will make my family fight harder and be louder...we will be heard...we will not give up.....thank yall for all the support yall give me and my family.....i could never thank any one of you enough....

thanks!!!!!