I think being chronically ill should afford you a few breaks from those around you.  God knows you aren't getting any breaks from the universe.  It is not an easy road.  To wake up everyday and put a fake smile on your face and make the best of a very bad situation.  If you really woke up and let everyone around you know how you truly felt, no one would want to be around you.  So shouldn't we be able to catch a few breaks.  Leave us out of the bullshit, try and make our lives a bit easier.  Is it really too much to ask.  We barely have the energy to function most of the time but to deal with unneeded stress and to put our energy to things that we really shouldn't have to be dealing with.  It is not an easy road. But just a bit offered by those closest to you can make that road a bit easier.

It is Crohns Disease Awareness Week.  Approximately ten years ago I had never heard of this disease.  Had no idea what I had been diagnosed with.  I just new I was terribly sick.  Ten years later I know much more than I did then and continue to be just as sick if not worse.  But the difference is that I now know many, many people who suffer with the same symptoms and pain that I deal with.  There seems to just be more and more people dealing with this every day.  They seem to be getting younger and younger too.  It is just devastating to think that a young person has to live the rest of their life living with what I deal with on a daily basis.  It really is a terrible quality of life and to think that little folks have there whole life ahead of them with this in mind is just a devastating thought.  There is no cure, for a few lucky ones there seems to be a stabilization or remission that they are able to reach, for the rest of us it can be pretty ugly.  Hopefully with the awareness reaching more and more they will come up with a cure or even just what causes this.  The hope that in my lifetime I might get some of my life back is my hope but even more so is the hope that the younger generations won't have to live with this for the rest of their lives.

Someone contacted me about my Lupus side effects because they too had severe side effects from this drug.  After really looking even more it seems that fungal infections are very consistent with this drug.  I wonder if the growth that was in my adenoid (I might add that my specialist was very stumped and surprised as he had never seen this before) might be fungal.  It wasn't cancerous, thank goodness but was infected.  Had I known to ask I would have put two and two together.  It is back and is on both adenoids now.  Seems that some of the people who got fungal infections, contracted a very hard to get rid of fungal infection.  One young man posted about his mother dying from taking Humira.  I currently have a chest cold and it hurts to breath, this along with the Latent TB has me worried.  When does the government say enough from this drug and take it off the market.   Are there just so many people that it is helping that the ones of us who have been hurt are minimal in comparison?

Just when you think things can't get any worse for you, they do.  Lupus Myositis in my upper right shoulder.   I literally cannot get myself up to a sitting position after sleeping.  The pain in my shoulders is debilitating at night and in the morning, gets better and then returns in the afternoon.  My Crohn's disease is really flaring it's ugly head today too.  Along with this, my migraines kicked in last night and all this with fighting a chest cold.  I feel and look like crap.  You know you are miserable when you look miserable and you just don't care.  That's me.  I am sleeping most of my night in a chair, because lying down is too painful.  I may sound like a broken record, but really Crohn's Disease seemed overwhelming as it was and then to deal with Lupus on top of it because of the Humira seems just over the top.  Don't think it can't happen to you, it did to me and I worry that many aren't being careful enough with this drug.  I worry about my chest cold since having developed Latent TB while on Humira and being unable to treat it due to my liver damage from yes you guessed it Humira.

My lupus is really flaring.  My joints hurt so bad I am unable lye down and sleep.  I sat in a recliner most of the night.  I wished those that are taking Humira would really reconsider the drug.  It has left me in a devastating painful mess.  If it can happen to me, believe me it can happen to you.  I wouldn't consider Stelara either.  It has a very dangerous brain side effect that could kill you.  These are not the light easy drugs they are advertising on TV.  Take for Psoriasis, well it gave me Psoriasis.  Lupus is as bad as Crohns Disease, I promise you.  My joints are bright red and the pain is intolerable.  I cannot lye down as it hurts just too much.  Please, please, please if you are taking Humira and unless it is a miracle drug for you, consider something, anything else.  I am not the only person who has developed Psoriasis, Lupus, Liver Damage, Migraines and Latent TB from taking it and I know I will not be the last.  You think Crohn's Disease is a tough road, it can get much worse.

I am really putting forth the effort to eat right.  I didn't eat red meat or consume sugar for twenty plus years and now have gone back to not only  not eating read meat and avoiding sugar, but eating only fish.  I have an occasional egg and cheese.  The one exception is yogurt everyday.  Currently I am consuming only whole wheat but am thinking about switching to gluten free.  I have and continue to Juice everyday.   Tonight's dinner is Trout and steamed vegies.  I have read that a vegan diet or even partial vegan as I am doing is supposed to help in aiding staying in Remission.  I realize my problem is that I am not only not in Remission but suffering quite terribly.  Including today, no amount of anything seems to touch my pain.  While I have seen no difference in eating this way, I do feel that I am getting better nutrients than the low fiber diet.  Now this may not be realistic in the long run, this I realize.  But the longer you are sick the more desperate you become to trying almost anything for relief. 

Living in Central Oregon and needing Specialized care is in itself not a good combination.  The specialist are an hour away from where I live and there seems to be only one group of them at the major clinic.  The clinic itself I am sure is wonderful, however the GI Department is with many faults.  First off, it takes months and I mean many up to 6 months just to get a return appointment.  Can you imagine going in and seeing your Speciality for Crohn's Disease and not being able to return for an appointment for followup for over a half of a year.  That's not even with one of the Doctors that is seeing an Assistant.  That department has taken on too many patients and in my humble opinion is all about routine colonoscopies for the elderly instead of really taking care of patients with bowel diseases.  I look forward to leaving this area eventually and going somewhere where the treatment is real and they have ample doctors to help the sick.  Same goes for the other specialists you need to see.  One Infectious Disease Doctor for the whole area.  A even busier group of Rheumatologist at the same clinic that take an act of god to get into.  This is the sampling of health care you have to choose from if you move to this lovely little area outside of Portland.  It is a great place to live as long as you don't get sick.