I Am Fine?

Someone asked if I have forgotten about my blog or am getting rid of updates. I haven't forgotten about anything. Believe it or not I have spent a good chunk of the past year writing and deleting or leaving as a draft and deleting this exact post. It stopped me from writing anything else for the most part because I was stuck on this topic...and I'm not crazy.

If you follow me on social media or periscope, you know the past year has been rough. I have spent the past year in the hospital just about every month for at least a day or two. I have Intracranial Hypertension along with RA, Fibro, POTS and other diagnosed medical issues. Diagnosed being the key word but it doesn't always seem like it's the key to anything for medical personnel.

After 5 years of head pain of at least a 6 out of 10 every day, I had a VP Shunt placed in September. It wasn't an easy road to get there. Over those 5 years (and much of the 7 before), I spent most of my time defending my symptoms and educating medical people I dealt with about IH. I spent it defending myself that my BP issues were directly related to it even though people insisted I must be not taking my meds correctly. I spent my life explaining that even though you may see no palpadema, I am having vision issues. I spent my life explaining that things aren't right and you aren't seeing it.

I missed my old primary who abruptly left the health system a few years ago. She used to say (long before my IH diagnosis) that there is something wrong with me and my doctors are all just idiots including her. It was years after her until I came across a new dr I was randomly assigned to last year who said on my first appointment DO NOT LET ANYONE TELL YOU THERE IS NOTHING WRONG WITH YOU OR THAT YOU ARE CRAZY!

It's not an easy thing to get through when everyone keeps saying there is nothing wrong. But with her on my team, I finally got a neurosurgery consult and a shunt. It worked great for 36 hours...then I got sick in the hospital and said something isn't working right anymore. It took me 6 weeks to prove to my neurosurgeon with the "last test he was running" that it wasn't working correctly. So I got a revision on Nov 1st then again 6 days later when the first didn't work. When the second revision didn't work either, I asked for the test again that proved it didn't work. My neurosurgeon said no.

He didn't just say no. He said it wasn't needed. In the past 4 months, I have been in the hospital so much I rarely make it 5 days without being in an ER or having some appointment. I've had new lumbar punctures (that show I'm still having high pressure issues), I've had new heart issues and old BP issues. All while saying I was fine. I jumped through my neurosurgeon's hoops when he wanted me to see this specialist and that one and see what they say then he will explore it. I end up get psych assigned to me in the hospital after everyone again thought I was losing it and couldn't possibly be taking my BP meds or doing what I'm supposed to be doing. I turned psych away without meds then called them back and added a med to prove what they are suggesting would "fix everything" wouldn't. It didn't even do a thing.

I saw the specialists who didn't know what each other said but said the same thing...it is either my shunt not working or my shunt not working for me. Either way, neurosurgery needs to look at it. So I tried. For five weeks, I tried to get my neurosurgeon to read reports while I kept being sent back to the ER and I would hear nothing back. I finally see him (in a funny way 5 days before I was seeing a 2nd neurosurgeon for a consult I finally got) and he wants to rerun that test.

I begged him for this test for 3 months. I said please order it because that is what showed it wasn't working before when every other test said it was. He said I didn't need it. He made me jump through hoops saying he would explore the shunt and now he had me spend almost $100 on ubers and his copay to say...let's run that test again.

So I waited another 3 weeks and listened to people tell me again I'm fine while I know I'm not. Now I wait on a call to see if the test showed it wasn't working or if he wants to move onto yet another test. While I wait still, I keep adding on random symptoms which (according to one of the socialists I was sent to by neurosurgery) is most likely because my brain has been being strangled by csf for over 5 years and is tired. I am having heart issues and other issues. I am having increased vision issues. I have parts of my body I am walking around with that in the past two weeks I can no longer feel (that keeps increasing).

But I'm fine. They put in comments that I could be exaggerating or it's something mentally wrong because I'm just fine. They skip the part where I have said for a dozen years, I'm cool with crazy if it's more acceptable for you to treat and then psych says I'm fine too.

Everyone says I'm fine.

As recently as two days ago I was in the ER because I was told if my symptoms change to go back. I was in the hospital the week before and said if I was discharged I wasn't sure I was coming back. But I didn't because my heart rate skyrocketed just sitting watching TV then dropped 100 points in a few mins. While there, I had chest pain that when up my neck. I lost feeling in my jaw and my face on my shunt side along with increased head pain on just my shutn side of the head. Which isn't normal. They sent me home and said I'm fine. They said if I walk outside the door and feel worse, come back in.

Are you the crazy one? Why would I keep coming back. I said if I left I didn't think I was coming back. I'm not going to keep returning when I get things like I did at the desk when I arrived..."No need to get a name, they know who she is." They know who I am because I keep getting I'm fine with a list of things to return to the ER for or I get sent by doctors offices.

So while I wait on the last test, I give up. I still can't feel half my face. I still am losing more feeling in certain limbs. I still am having spikes in heart rate that then crash and I can't catch my breath and cough like I have pneumonia (this is what sent me to the ER Friday morning). I'm still passing out and probably banging my shunt side of my head each time. I'm still increasing in symptoms.

But accoridng to most medical people, I'm still fine.

#intracranialhypertension #IHLife #blog