Well, it's been awhile, as usual.  A lot has happened.  Nothing as usual there either.  Humira is now at every 12 days, with I believe is going to be okay.  This last week, I was in the store, the day before my shot was due, and I had to hold onto the cart because the pain was terrible.  It seemed to come on so quickly, and spread with every step I was taking.  My legs, my hips, into my groin area..no place was off limits this time.  No just physical, if that makes sense, it invades my entire life.

People with chronic illness not only have to deal with their pain, their loss, their depression, but they also have to deal with everyone elses as well.  Never does it leave the back of your mind what a failure you are, how you have let others down, and you are forever looking for those comments of proof that always come, or the rolling of the eyes, whatever it is that you need to validate what you "know'' others are feeling about you.  People may say one thing, but sooner or later, something different will slip out of their mouths; maybe they won't realize it, or maybe they do because they are just as sick and tired of the disease as we are.  "Do whatever it is YOU need to do to take care of yourself"...Really?  What if that means staying in bed for a few day, and doing NOTHING!!!!

You do know when you are sleeping, soundly, every night, I am not.  I am walking the floors to try to stop the pain.  I am taking hot baths just to make the pain in my legs tolerable enough to let the blankets touch them.  I am vomiting so hard, again, that if I hadn't peed first, there would be another mess to clean up.  And, more nights than not, I am still awake when your alarm goes off, and even on your days off, and I sleep past 8:00 a.m., I've only had about 3 hours sleep - - for the 4 night in a week.

Here come the anger.  We never asked to be sick.  We never asked to be poked, pinched, put into skinny tubed with horribly loud noises for hours, and then told there was nothing wrong with us  - - for years on end.  To be in so much pain that we cannot walk, lost our dreams to be Nurses, Doctors, Lawyers, Fantastic Mothers, Fathers, Lovers and Best Friends.  We have lost every friend that we've had, our entire social network, social life, because we are so unreliable.  One day we are feeling great, and the next day we cannot function.  We lost our Houses, Cars,  and Businesses because we couldn't afford the Medical bills that mounted over these years until finally, finally someone stopped rolling their eyes and understood what was wrong with us, and helped us, but, by that time, this disease has progressed so much our bones have fused together and caused so much other damage in our bodies, all we can pray for is it slows it down and eases the pain.  But, the saddest part is, there is so much unsaid damage to our Relationships now, that the majority of us don't make it.  Not just because of "this'' disease, but because of any Chronic Disease, or a Death of a child, or severe trauma - - Marriage / Relationships are put to a test, a test that they usually don't win.

These little comments can either push us down even farther to keep us from fighting to get better, keep us from fighting to maintain, or stop us from fighting at all.  We quit! OR, we can start fighting all over again, for ourselves.  Not just from the disease prospective, but from the person inside of us that has been beaten down for so many years that has wanted to get out, but has just been too tired, in too much pain, and has had to pick their battles.  Maybe one more little roll of the eyes, or comment about sleeping in too late could be the push that pushes us too far.



I, personally, have so much to be grateful for though out all of this journey.  During it, there has been an Open Heart Surgery, 2 stents. Diabetes w/ Retinopathy w/ so many lazer surgeries, and 2 cataracts removed.  Macular Degeneration with injection of Avastin directly into my eye to try to stop the scar tissue from building up.  Because of all this, I can't see very well.  I see double, with wavy lines caused by the scar tissue.  I have Kidney's that have low operated levels because I choose to take way more Advil then I should have due to all the pain I was in.  Now, I cannot take anything like Advil again.  I have a frozen Left Shoulder, and a Right one that is starting to have the same problems.  I was finally diagnosed with Ankylosing Spondylitis...fusing of the bones, so my hips / back are already fused, which I take injections of Humira for every 12 days for the rest of my life.  It is "like" chemo, it causes my immune system to go to nothing, so I can't be around sick people, or I end up sick and in the hospital.  I don't have anything to fight it off with.
 I have Gastroparesis - - my Stomach doesn't digest food any more.  I was to go to Barnes Hospital in St. Louis, but the Dr. left, and now it's in November.  I vomit a lot.  I am sick to my stomach a lot.
We got into an Motorcycle accident last November 2011, and I was stuck by an orange construction cone at 55 MPH, and the nerves in my knee were cut, and won't heal, so they are "sparking" all the time, with causes pain, all the time!  I wear a pain numbing patch 12 hours on, and 12 hours off.  Just a breeze going over the scar causes pain.   There is other things, but these are the main ones that I live with....that WE deal with.


This has been a rough few months.  I'm taking it one step at a time, but I do know, I am going to work on me, and what I need to do for me, and if that is to sleep until 10:00 a.m., then I will, and I won't feel guilty about it - - ever, ever again.