Things to Think About

Demons of Pain

If you are one of the lucky ones like me that deal with pain on a daily basis – here is a soft high five for ya!  My normal daily pain I would say is about a good 7 or 8 on that happy little pain scale at the doctors office.  You know which one I mean,right? Standard-Pain-Scale

They should have a chronic pain scale that goes higher.  This past month – I am a solid 11.  Spinal Tap Style…. ( you millennials prob don’t get the reference, google This Is Spinal Tap ) It royally sucks.   I know I have bitched about this before, but it fucking sucks.

Not knowing what is causing my issues fucking blows.  If I had a cause, I could treat the cause instead of treating the effect as we are now. Like, if you have cancer – you get chemo, diabetes – you take insulin , cough -cough drops.  I am stuck with no cause.

I am at the mercy of my body giving me no symptoms or warning – the flares just hit and  I am in the middle of a long one.  I know it could be worse and I am grateful that its not but this shit is getting old.  I have been doing my Actemra shots each week but currently I am waiting for my shipment to arrive. Specialty pharmacies are great, lemme tell ya.  So I was getting my shots from CVS Specialty pharmacy, but I got a new health insurance and have to go through a different pharmacy. I was on the phone with them all week, they kept transferring me to a voicemail that specifically says ” leave your name and number….blah blah blah and we will call you back ….YES, WE WILL CALL YOU BACK ”  Left messages all week and finally complained that no one called me back and I got to speak to someone.   Problem is that I needed to take my shot on Thursday night. Its Sunday. And my shipment won’t be here til Tuesday.  They did say I would not have to pay the co pay for my trouble,but honestly, I don’t care – I just need my meds.  Ugh.

It sucks to rely on something to feel better , even when its not working good.  But the potential is there and it gives me hope.

I have thought about going back to the drawing board and taking all of my tests and starting somewhere new, like a 3rd or 4th opinion.  I don’t know if that would be worth it or not.

I am sorry this is a pity party, but  I am frustrated as hell.

I haven’t been to the gym in  a month and I am pissed. But I hurt.  Its hard enough to be me day to day and get through what I need to .

In other positive news – I am still steadily losing weight.  Currently down 72 pounds!!!!  I am definitely navigating eating better.  Thanksgiving was different this year, had to really pace myself and certainly did not eat nearly as much as usual.

So, I have been thinking.  There has got to be some medical student , some doctor, some medical professional who is looking for a case.  Who wants to be the person to give an actual name  to Meganitis?  I am serious.  If you want to take a crack at it, hit me up!

I don’t think that its too much to ask to ween the daily pain down to a 4 or a 5 if I won’t ever be without it.

I just gotta have hope that eventually I will have an answer and feel better.

Until next time folks -Just gotta keep swimming !

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Daily Rants and Raves

Frustrated in Undiagnosed Land

 

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I had a good run.  From February to September has been the longest time I since I got sick that I have been relatively  flare free. A few small little flares , but otherwise, its been good.  The past month or so , I have noticed the flare getting worse.  It hasn’t subsided.

Arm pits sore, necklace of pain in full effect. Whole Body soreness.  I know I have said it before, I am so fucking over this.

I have an appointment with my Rhumy  coming up, I am not even sure what he can do at this point. But I am going to try and be positive.  I am hoping maybe something will explain why the sudden flare.

Its very hard to be positive. I am trying, I swear, its just so damn hard.  No one understands , because no one knows what the fuck this is.  Like, if you have a disease, chances are there are other  patients who you can relate to and who understand what you are going through.  With Meganitis, I ain’t got shit.

While I am thankful that this is not something that has killed me and I am thankful it is not worse than it is, it truly is awful.  I have resigned myself to the fact that this is something I will never be able to give a proper name and that I will have to deal with the rest of my life.  I just wish the treatment was working.

It’s a terrifying thought that I will potentially be in pain for the rest of my life.  On the Brightside, I guess I can say that I now have a high tolerance for pain.

I am sorry for throwing the pity party.  Some days this really just gets to me and the constant pain I have been in today is exhausting.

Thank you to all of you for coming on the swim with me.  The ups and downs , its nice to have some company on the ride.

thXW3ORQP0

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Daily Rants and Raves

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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