Humira VS Heart?  That is the question for today.

I am so exhausted.  I can't breath.  I have no desire to get up and do anything, not to shower, not to clean..not to eat....nothing. 

I did the dishes.  I ran the sweeper, and I couldn't breath through the entire process, just cry.

I hurt, yep, you guessed it, all over.  But, my joints hurts terribly.  My toes hurt, all the way up to my neck.  My eyes are burning, I am seeing double..that is when I can keep my eyes open.  It's a struggle.  I am so tired.  Tired of hurting.  Tired in general....just Tired.

I just want to go to bed.  The sun isn't out, otherwise I would say I want to go outside, get into my lawn chair, with a blanket, and sleep.  Just to be left alone, for hours, maybe .. longer. 

I can't stop crying.  What is wrong with me????

Is the Humira not working?  Is it the weather, this storm that we are supposed to be getting?  Did my walk of 2 hours through Walmart put me back .. days, months??  Is it the junk food I have been snacking on?  (hmmm, here comes the No Starch AS Diet I've been reading about??) Is walking Casper for 30 mins a day too much?  (really??!!)  WHAT??  What happened?

I've been sleeping better than I've slept my entire life, so that doesn't seem to be the problem.  I haven't done anything around the house, like lifting things, more cleaning ..ha ha ha...so no problem there.  (hint hint...clean that bedroom..my side)

Here goes the Guilt..more Guilt!  I have 4 weeks to go on a camping trip.  4 weeks to feel better, get into better shape, be ready to ride 8 straight hours, put up the camp site, and feel like doing something.  Of course, this is after NOT riding a motorcycle all winter, starting a new medication that is already making me sick after each shot, going down south where the temp is hotter and more humid....Nope, not setting myself up for failure here.  Well, I didn't think so, until after I just read this on paper.  See, that is why they always tell you to write things down...always looks a little different when you do.  :)   Makes you see things .. differently.  That's okay, I'm still going.  I have 4 weeks!

I want to STOP being sick.  I want to STOP being in PAIN.  I want people to stop looking at me differently.  I want to be NORMAL, whatever that is any more. 

I just said the other day, I want a job!  Yep, a real job. Hmm, now looking at all the options, WHO would hire me???

I miss my old Clients.  I miss the Men's Shelter.  I miss Prairie Center.  I miss my life.

Question 2:  Is this my heart?  Is this why I can't breath whenever I do something?  I'm due back to my Cardiologist in September.  I've been taking my blood pressure, and a few times at the Doctor and it does seem to be higher.  The Doctor's office say it's because I am nervous, but I am not nervous here.  They don't understand how important it is that my blood pressure stay very low, not even normal.  My pulse stay low. When I go and it's 110, and I have been sitting in the waiting room for 30 mins....Houston, we have a problem.  If I increase my pulse medication any more, I won't function.  Charles might as well put me in a chair, and go have a life of his own.

Which goes on to more Guilt.....how much Guilt can one person have inside their body, before they just explode?  What happened when they do explode??  Is there a Doctor for this too?  

Is there a Doctor that can remove this Pity Pot I am siting on?

Friday, April 20, 2012.

Today, I am so overwhelmed, I don't know where to begin.  I took my 4th Humira shot yesterday, and something happened within hours.  My vision started to change, I was seeing double, and everything was bright..so bright to the point of being painful.  My body was electrified...how is that for a word?  I can't think of a word better to describe what I was feeling.  Not static.  But, as if I had put my finger, just the tip, being a little wet, into the electrical outlet for a second.   I have felt like this for the last 24 hrs.  Not as intense today, but it's there.  Kind of in the background. My face almost feels numb, like a night of too much partying.   Hmmm, could you explain that one to your doctor.  Ha ha, of course, how else did he or she make it through med school and hours of residency? THEY know.

I had gone to the Orthopedic Doctor the day before, and they asked if I had been sick because of the temp I had.  VERY low.  He explained to me, since I was on Humira, I was to take my temp in the morning BEFORE my injection and if it was over normal, NOT to take the injection and call my Doctor.  I did take my temp and it was 97.9, so I took the injection.  Since then, I have taken it and it's been around 96.3, and 97.  I am wondering if it is broken.  I have been coughing, a lot, and a little out of breath.  I am praying my thermometer isn't broken, and I am a little sick!  Tomorrow, I plan on buying a new one to be sure!  The side effects of Humira are...frightening if you are sick! 

My pain level seems to be decreasing with each injection, which I am SO very grateful for, and then increasing when the next injection comes due.  Monday on the second week, the pain comes back, increasing each day until my shot is due on Thursday.  The pain in my SI joints are calming down, but the strange thing is I can feel more pain in my shoulders and other joints now, like my hands.  It seems like I can't use them as well any more.  I am wondering if it is because I am using them more now.  I do know, for once in my life maybe, I am getting more sleep.  Charles turned off the TV at around 11:30 p.m. last night because I couldn't stay awake, and I didn't get out of bed until 2:30 a.m.  : )   I woke up a few times before then, but I actually stayed in bed!!  From 2:30 a.m. on, I was awake on and off, but stayed there until we both got up at 8:00 a.m.   That was a first!  (hoping a first of many!)  I am thinking that the pain is decreasing in my sleep as well, which is allowing me to sleep...my opinion!

My stress level is through the roof.  Here comes the honest part.  Family!  I am still having problems with my daughter, which I am trying so very hard to distance myself when she  is so negative.  I am trying to tell her, that I will be a part of her life when she is positive, no other time.  Is it selfish on my part to only want to be part of her life on MY terms now because of all the things she has done to me?  Who makes the rules in these games?  You read all the books, and they all have different answers / rules...depending on the author.  Who made them experts?  I'm exhausted trying to do the "right" thing and not piss off everyone, and in the mean time, I have exhausted myself..and hurt ME.  Damned if you do...........Damned if your don't!

My son, we are trying to help him get his life together, which is fine since he is helping himself.  I enjoy that. He just graduated a program at our local college and I am so proud of him. He's been so scared to "move" anywhere in life, and he just completed this program, and I can see the difference in him when I look at him.  It's amazing how confident he is now...more so than any time in his life.  Now to the next chapter. : )

My father!  Here comes my big stressor in my life right now.   What do you do with your Father?  Him and my son had a big falling out, and honestly, I have nothing to do with it, but it brings up my entire childhood, and so I am right smack in the middle of it.  My son made a deal with my Father, and it fell through. We are helping my son MORE now.  We don't have the money to do it.  I don't have the 'health' to do it.  BUT, we both want to do it, and enjoy helping him and enjoy seeing him grow.  The problem is, I hear and see the pain that my Father is causing my son, and it reminds me of everything I went through growing up..some that I thought I had forgotten..and now remember.  I don't know what to do with it all. I don't know how to help my son with it, though he is far more outspoken that I ever was.  I guess since he was never close with my Father it is easier for him to say how he feels.  He was hurt, thinking that he would get another Father figure,and family,  and was basically told to get out of his life.  I've joked through the years that my Father doesn't LIKE me, and he got to witness that, up close, and sadly, and painfully, I got reminded of it again.  It's been a rough week, with more, and new stress.

  But, we have been able to help my son, which I am grateful for (Charles, thank you) and will be able to see him grow even more now.  I have wanted a "family" so badly in my life...who says it had to include your Father?  Maybe, it could be just Charles and I and the children that choose to come around??

So, when you have been sick for so long, and you have just watched the world go past you....how do you stop it, and jump back on?  With so many different areas in your life that have "just been"..where to do pick an opening to jump into?  Spouse, Children, Working, Home, Friends, Family, Health ...the world.....where do you start to learn again?   I listen  about Charles' clients that come out of prison, spending 10, 15 or 20 yrs behind those huge walls, never knowing what is going on in this world.  I feel like that.  The last 10 years, I have lived inside this house, only leaving to go see my Doctors or Meetings, or with Charles.  The world has changed...this town has changed.

Where do I fit in?  Where am I going to jump BACK in?

Monday, 4/9/12...Wow, what a day it's been.  You know how  Doctors tell you to control your stress?  Might as well be telling us to control the weather, right!  I told myself, I would be honest on this blog, because when people start reading it, and responding, I want them to be able to come here and be honest as well.  So, here goes.  I have a daughter who has bi polar, and I spent a few hours today with her, and my lovely grandson.  I helped her apply for Disability.  Things went well, until what she needed from me was over, then all hell broke loose.  Hmmm, funny how that seems to keep happening  Anyway, I came home in tears, telling myself I was not going to put myself through this again.  Actually, this is just an extension of Easter...Father issues...we all have them, right?  But, this, right now, is about stress.

 Humira reduces my immune system to zero, well almost, and stress, well, it will take it the rest of the way to zero, quickly!  The Doctor informed us that if I get sick...1.  I can't take my shots, and the pain will increase, and NO ONE wants that....2.  If I get too sick, I will be admitted into the hospital, and Lord, I don't want any more trips into the hospital!  Have you read the side effects of Humira?  Bad, bad side effects!!  So, keeping your stress level down is very important, and so far, I haven't done a very good job of it..yet.

My pain level has gone down some since my third injection.  I do see a pattern during the week OF the injection, the pain is more tolerable, but the week AFTER the injection, the pain increases and I have to take more vicodin and other pain relief medications.  I don't see my Doctor until the end of May, where we are going to  talk about increasing my injections to weekly.  Night time is horrible.  I think it's because I am in one position for so long, and when I move, it feels like my hips are breaking.  There is other pain as well.  Hands, wrists, fingers, ankles, shoulders, ...oh hell, it's all over! ha ha!!  Soon as you say, "all over'', you become the Fibro Queen though.  

Maybe tomorrow, I'll have a "positive'' day, and I can catch you up on everything else of my medical history that might have something to do with AS and introduce you to my family.  I haven't figured out how to put pictures on here yet, but I'll work on that as well.  Since we joined the "new age" and got a phone with a camera, I'll have a lot of pictures to share.

There is so much to talk about....so the beginning sounds like the best place to start....

I started this blog, somewhat in a hurry, so now I am going to back track a bit, to catch everyone up.

I have been in pain for over 10 yrs.  Mostly in my hips, but I also have that "all over" pain that was diagnosed as Fibromyalgia.  The kind of pain that there is nothing they can do about, except pat you on the head, and send you on your way, or to another Doctor to collect more money.  Bitter...yes, I am.  I have been to numerous Rheumatologist, and because I don't fit the mold; meaning young male, positive blood work, I don't get a diagnosis.  Again, patted on the head, or sent to another money hungry Doctor.

After awhile, you become very jaded, frustrated, or lets just put it on the table, down right pissed off.  My last Rhuemy said, because I didn't have a "bamboo spine" I didn't have Ankylosing  Spondylitis, and even if I did, because I have a heart condition, he wouldn't treat me anyway, so we won't bother with the blood work, nor Narcotics, or NSAIDS because I have stage III kidney disease.  Yeah, he was a trooper for all women that walked through his doors.  He was fired!  I think there was a party, but I couldn't prove it.

Fast forward to now.  My wonderful eye Doctor, Dr. George diagnosed me with Iritis, and wrote a letter to my primary stating that he felt this was another piece of the puzzle of AS  ... I can't keep spelling that horrible word out, so can we agree to call it AS??   SO, I called my primary's office and got her Nurse Practitioner's instead.  (note to self, in writing...Never make this mistake again)  She advised me that ONE, just one case of Iritis was not going to get me a visit to the new Rheumatologist.  

A few weeks later, I woke up in so much pain, I felt like a Semi ran over me, not the usual Mac Truck, but the biggest semi that was working.  Nothing worked for the pain; vicodin, aleeve, tylenol..nor mixing them.  Standing in one place was beyond any pain I had had in years.  Forget that pain scale that we all hate to relate our pain to..I was at a 20. 

Day 3 with this pain, I agreed to let Charles take me to the emergency room.  I couldn't rest on my back, I had to stay on my side, in the fetal position, and cry.  I did get a fantastic nurse and Doctor.  They ran all the usual tests, telling me they just knew I had Lupus.  My face was so red, it was purple.  Ahhhh, here came the Morphine...4 mg.  It was taking that stab me with a knife, twist it and stab me again Pain away, but not that throbbing, aching, pain, so I couldn't complain...until the knife pain started coming back after about 15 mins.  The nurse came in, and I was crying and she went to the Doctor to see what the tests results were, and to ask for more pain relief. 

The Doctor came in, confused because all the results were negative.  He could see how swollen my hands and legs/feet were, yet every test for inflammation were negative.  My face was purple, a rash across my nose and cheeks, all the Lupus tests - - negative.  They always are!  He gave me more morphine to get me home, and stronger Vicodin, and had me make an appointment with the new Rheumatologist ASAP. 

After we got home, we found all the paperwork we could find showing the fused SI joints to take to this Doctor, hoping to cut to the chase of getting diagnosed and praying for some type of treatment.  We typed a letter w/ the labs and x-rays, sending them before my appointment, again praying that he would see something the others hadn't seen.  We had a week to wait.

He was a nice man.  First saying he couldn't diagnosed me with AS, then saying yes it was.  Then sending me for new x-rays, including hands, feet and lower abdomen.  After a few weeks of this, we heard what we had been waiting for for over 10 years.  " You have a strong heart muscle, and you are fusing, for whatever reason, AS or not, so I am going to treat you with HUMIRA"   I could have hugged him!!!!

Next, to get the insurance to agree to it.

This is going to be my blog about my new life since being diagnosed with AS and starting on Humira.  I just had my 3rd injection, and will start at the beginning at everything my family and I have gone through..it's been a long road, many doctors, pain, frustration, tears, and finally we are here.  ..........  Carla