You think you know, but you have no idea…Real World : The Unknown Sick

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This week has been particularly awful as far as my Meganitis goes.  This is the most pain I have been since this whole thing began.  On the positive side though – I started the actemra this week after several rejections for this and other medications that might help.  Just in time too – my inflammation is way up, blood work was high.  Down side is that it could take 3 weeks for this to kick in.

So, my life right now is just ugh.  I have been trying to be positive about everything but the struggle is real.  It is very hard to maintain any sort of joy when you are in constant pain.

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To be honest, I started this post last week, its been sitting here brewing, all my thoughts jumbling around my brain.  I want to say so much but its just hard to get out.

So yes, last week was one of the worse on record for me.  In addition to the excruciating pain, my inflammation was “way up ” per my doctor.  I started my new medication, I am doing Actemra shots every week.  I have been rejected for other medications by my insurance company and last week came THE talk with my doctor .  You know the one, the one where the doctor says ” Can I be honest with you?” you say ” yes of course” and he says ” I don’t know what is wrong with you and we are trying everything I know . Nothing is getting better and you are getting worse. If this doesn’t work, we may have talk about if I am the right doctor for you or  a visit to the pain clinic”

To sum up :

  • No Stills disease which he previously said I had
  • Getting worse, not better
  • Inflammation way up
  • Actemra is my hail mary pass – if it doesn’t work not sure where we will go, co pay is $40 for a month supply, pricey , but if that is what it costs to feel good – so be it
  • My “foggy brain” seems to be fixed by switching my Gabapentin to a different med at night ( I guess 1500 mg is a high dose?) That I have definitely noticed a difference.  I was not as forgetful and felt like I had a clearer head.

I capped off the week taking time off from work to rest.  I have to say, doing nothing for days was exactly what I needed to recharge. I did my second Actemra shot last night and returned to work today .

It is so hard not to allow this demon sickness to take over my life.  It has so much become who I am and I fucking hate it.  And as much as I hate it, I don’t know how to change it.  My day to day depends on something I cannot even put a name to. I have no fix , I have no cure, I have no name .  I am a guinea pig after 9 different doctors.  What is the most shocking is that these are the best doctors in the world and they still do not know the cause of this.  Its getting old hearing ” maybe they will name a disease after you …” Like fucking really ?

I have to think about every step I take,  and if the pain is bad enough, I have to think about how I will sit, how I will walk or hobble.

It sucks being in constant pain.  It sucks being constantly exhausted.  It sucks having skin that feels like it is on fire.  It sucks having your armpits swell and hurt.  It sucks when your neck hurts.  It sucks getting random lumpy lumps ( thank God, I have not had in quite some time )  It sucks looking at yourself in the mirror and seeing a completely expanded distorted unrecognizable version of yourself.  It sucks not being able to move and exercise to make yourself the person you knew.

Pain is ugly .

Pain is strong.  Much stronger than I thought.

And I am weak.

I keep trying to find the way.  Any way that I can resume my life and get out of this mud filled funk.  I hate feeling the way I do .  And I know , you are probably saying , suck it up , or change your life then, but if you have ever been in never ending pain, you know it is easier said than done.

Like seriously , when will it end?

Soooo, bringing us to today :

I actually feel more better today than I have felt in a very long time.  I want more than anything to declare my love for this medication , thinking that it is responsible for this feeling, but the pessimist in me tells me to hold off on that parade just yet.

I felt better today and that is a small victory that I will take and hold on to.  I have gotten much better with the acceptance of the little victories instead of getting pissed I am not well.  I can only hope that I will continue to go up from here and not slip back down into this pit from Hell that my life has succumbed to.

I like to think that I am a strong person, but to be honest, I just want to curl in a ball on my bed and wait for this to pass over.  Wishful thinking …. that it will actually pass.   I have definitely become more of a headcase through this, which sucks.  I am looking into therapists to see if that will help me at all.

I don’t feel normal.  Like what do you say when someone says ” How are you ?” do I lie and say ” Great ! Never better !” or do I tell the truth and say ” I’m in a shit ton of pain with no end in sight, how you doin’?”  Then I have to explain everything, which for folks to understand what I have going on, I have to do it.

Maybe I will print out cards to carry around with me….. ” Meganitis , the bad and the ugly, there is no good…”

I think of my mother everyday and I how I want to make her proud.  She dealt with so much medical crap, I don’t know how she did it.  I wish I had one ounce of her strength .  She dealt with so many things medically and she never let it affect her spirit.  Mean while my spirit seems to be sucking me away like the bad spirits in he movie Ghost

 

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Yea, this is me, lol

Mum didn’t stop believing and I have to believe there will be better days to come.

Until then, I will Just Keep Swimming… cause ….

just keep swimming dory

Don’t Stop Believing and Just Keep Swimming , feels good to say them together .

Good words to live by, guess I need to take my own advice…..

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Things have changed

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Things have changed drastically in my life since I started my journey.   When I started this, it was a fitness journey. Now my life has become the quest for diagnosis. Not exactly what I wanted out of my life, but this is currently where I am .

So, what does that mean for my blog?

It won’t be as much about weight loss , but rather more about my health issues and daily life. I have to imagine I am not the only one with ongoing medical issues and no diagnosis.

I hope I can share my stories and maybe see some too.

So this is where things currently are in my life medically :

After my disastrous ortho appointment where he basically pressed “repeat” on all the other things doctors have said to me, I went back to my Rheumetologist.  I gotta say, I do really like my Rhumetologist, Dr. Dellaripa.  He actually is very up front with me  and pays attention.  Out of all of the ones I have seen, I feel like it is just as frustrating to him that we cannot figure this out as it is to me.

Dr. Dellaripa wanted to do an MRI.  My knees were in excruciating pain. So , I was down for whatever. I go in for the MRI and the person at the desk asked how my veins were for the contrast.  I told her good, I ,had had  contrast several times before. They call me in.

I’m sitting on the table waiting for the IV.  And he starts to get me into position for the MRI. I questioned , wasn’t I supposed to have the contrast? He goes back and double checks the order, nope, not supposed to have it. We proceed with the MRI. He puts my knee in this boot type thing to keep it down. I thought I was going to scream. It was so painful not being able to move my knee at all, it being locked down in this thing was just horrible.  I was just about to hit the ” help ” button they gave me to stop if I needed to, when it was over. Thank God!

Fast Forward to the next day, Hospital calls me and apologizes profusely that they screwed up and I need to come back to have the MRI done again …..WITH CONTRAST!

To say I was upset and pissed is an understatement. This was complete bullshit.

It was so hard to walk after the first one, I am so glad I had my husband go with me. I was literally hanging on the railings in the hallways to help me walk. So, I was really not looking forward to this one.

This time, they gave me the contrast and it was not as long, thank goodness.

Results – I have arthritis in my knees apparently . It wasn’t there 6 months ago. Also still have enlarged lymph nodes everywhere. Even my knees. Who even knew you have lymph nodes in your knees?  And of course mine are messed up . Dr Dellaripa decided that we are going to treat me with Metheltrexate for the arthritis for the time being.  I had already been tested for Rhumetoid Arthritis and everything came back negative, but he knew I needed something. The plan was to start the meds and go back in a month.

It was definitely a rocky road starting the meds.  Took a few weeks to kick in, to the point where I am now  on a low dose of steroids. But it has been about  4 weeks and there has been a lot of improvement. My right knee is currently pain free. My left knee is still sore, but it is way better than it was .  I even did 5 flights of stairs last week – and survived.  Crazy, right?  Able to fully walk when done.  Don’t get me wrong , I was sore , but I was able to keep pace with everyone for the most part. A victory!

This brings us to last week.  Knees aside, I have not been feeling all that great.  My armpits have been killing me – big indication that I am in the middle of a flare up .  I have not felt any enlarged lymph nodes, but I guess this is their way of letting me know, they are still here.  So, doctor is sending me for another PET Scan , went for more blood work and now
I need to go see a Hematologist.

I flat out asked the dr if its possible that this is cancer and its a slow developing one or if its possible that it could turn into cancer.  His response was ” absolutely “.

Call it naive, call it frustrated, call it fed up , but I thought cancer was off the table.  I guess its on the table, I guess everything is on the table.Bone marrow test too is on the table.   Its like a viking table. Huge and ginormous and full of crap.

I’m looking at things differently than I did before. I am sick, no one knows how sick. And some days are better than others. But I can’t stop living my life.

So, I am not going to stress. I can’t.  I just gotta go day by day and enjoy things as I can .  I know some days will be better than others . And some days is better than no days. I’ll take what I can .

I have a busy week ahead.  Hoping for minimal to no flare ups.

Hoping everyone has a great week !

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Down with the sickness

Ugh. I am sick, I HATE, no, I LOATHE being sick.  I felt it coming on Friday night, I could feel it in my throat, took some NyQuil and prayed.  To no avail, woke up worse Saturday. I still got my class in, but went home, showered and was in bed the rest of the weekend.  I am still all stuffed up.  I can’t stand it!

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I am so frustrated! I am not supposed to be sick!   I met with my coach  to go over my nutrition, I have  a new plan I need to stick to and I feel like crap, I don’t want to eat much, but I need to eat.  It always seems to happen like this…. I get going on something, then boom! something happens and I am tossed off the path.  I CANNOT FALL OFF THE WAGON! I know that this is just a tiny bump, but it just drives me nuts.  I am praying that the NyQuil will work tonight and I will wake up so much better tomorrow.

What do you do when you are sick and need to stay on track? How do you do it?  ARRGG!!!!

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