Tuesday, January 8, 2019

You Want Me to Take WHAT?

What a relief!! I left the doctor's office with a SMILE!


Nervous optimism?
Let's recap the last visit that I vented about, so then we can see what a positive difference today's visit was. Basically a kid decided that no matter what I said, my issue is obviously just Meniere's Disease. It felt like he did a google search to read what it is, then questioned me about my diagnosis - with a tone like I was making it up and didn't know what it really is. Then he would recite the generic list of symptoms. Get this, he asked me to tell him what vertigo is - then confirmed what it is and explained it to me in the most patronizing tone. As I said to my husband today .... and I cracked myself up with this one... "I've had Meniere's Disease longer than this kid has had pubic hair." He doesn't get to talk down to me ever again! His basic instructions after NOT listening to a word I said were to reduce my salt (which I can hardly even reduce) and avoid caffeine (which I so rarely drink that it hardly even counts as having). A pointless visit that only pissed me off and made me vow to never have an appointment with him again.

For today's visit I was nervous, but going in with a completely open mind. I was seeing my new primary care provider that I've never met. Maybe I would love her? Maybe she'd be completely different and actually listen? Maybe she wouldn't listen and I would leave that medical facility all together and search out a new family doctor?

I was seen right away, and had to do a standard little questionnaire, which resulted in a follow-up questionnaire because I had to be honest ... I have NOT been happy or motivated to do things in the last few weeks. My life hasn't been a life. I have been suffering in pain and can only lay down and barely sleep. I assured them I am NOT suicidal, that its just misery from the pain which is the reason for the appointment.

Then my new PCP came in and I immediately felt a sense of ease. We started from the very beginning. She never once got hung up on Meniere's Disease. As I hoped, it was like it doesn't even exist! She listened to everything I said. She asked me new questions. My husband was with us and able to help out with some things, and even offered up that I am a vegetarian - which could possibly come into play!

To keep it all short, this is the latest:  tons of blood work done to check for vitamin levels and other things the ER blood work didn't look at. Perhaps there is a vitamin deficiency and we can find an easy fix! Or maybe we can at least rule some things out. Another possibility is that I have cerebral fluid leakage - which would NOT show up on an MRI and could explain why my MRI looked normal. I happily left with a referral to the neurologist I requested based on a friend's positive review. So now we wait for the blood work to come back and contact from the neurologist. I have a new prescription to help with the pain so I can get through my workday without intense pain or turning into a drooling zombie -- because drooling zombie is all I have been in 2019 so far! ALSO .... I love this.... she WANTS me to increase my caffeine! The thought is it could help raise my blood pressure, which could help if my brain is in fact leaking. HA! She actually suggested 5 Hour Energy to see if it brings any relief!

So that's where things are. I am writing this in intense pain, but with a sense of relief and optimism that we are going in the right direction on finding a cause and hopefully a fix!  And I will happily go see her again for sure. Hallelujah!!

Thursday, January 3, 2019

Can I Have That Hour Back?

Warning: venting ahead.

When I was still optimistic.
I wish I could erase Ménière’s Disease from my medical records. It’s feeling as if I could have some serious problem, but nobody will even look or consider any possibilities because it is easier to just say it’s Ménière’s Disease issues. 

And sorry, doctors, but you do NOT understand it like you think you do. I’m in a couple Ménière’s support groups and we all feel this way. It’s such a strange thing that varies for each patient. You can’t lump us all together and just assume we are the same and that any little head issue is Ménière’s. I bet Jeff and I are different. Tara and I are different. But we all suffer from the same thing in our unique ways. 

So I go to doctors and they immediately see Ménière’s on my resume and that’s that. I can’t get through to them that what I have been experiencing for a month is NOT Ménière’s disease. It’s not a little headache. I’m not overdoing it on caffeine and salt. Want me to stop drinking coffee? Okay. I’ve never even had a single sip of it in my entire life, so consider that done. 

I can handle vertigo. I deal with it nearly every day. I can’t handle debilitating pain that nearly makes me cry at work, keeps me from being able to carry my own child, makes me cringe to put on shoes, prohibits me from being an independent adult that can drive to the store to get deodorant on my own. 

It’s NOT a headache!

It’s NOT a migraine!

It’s not just symptoms of a disease I have mastered dealing with for the last 15 years. 

It’s like talking to a wall sometimes. 

So after a meeting with a new primary care person I have made zero progress. I am off of one of the prescriptions which I am perfectly fine with. It didn’t seem to be helping anyway, and I don’t like to take medications unless I really need to. 

All this being said, I am still in pain. Urgent Care and the Emergency Room have done all they can. Next week I have an appointment with another new person. Maybe I’ll leave feeling better about things. I hope. 

I don’t want there to be something wrong, but I also want help and to be able to live my normal life again. So if that means a referral to a neurologist, that’s what I want. I just want them to look beyond. I want them to get out of this Ménière’s Disease blockade and actually listen to me. This intense pain every day for a month is NOT natural and clearly isn’t just going away. 

Let’s all cross our fingers for next week’s appointment, shall we?!

Ugh, I'm so mad and already hurting ... I'm putting on those new running shoes and turning on the treadmill. If medical folks won't help with the pain then I guess I just suffer through it. 


Wednesday, January 2, 2019

I Hide Cookies

In the spirit of a fresh year of new blogs, here’s the latest!

First up - the hospital is OUT OF COOKIES!!! What???? Screw those healthy resolutions people start. I want my hospital cookies. **Thankfully I have part of a snickerdoodle remaining, hidden in my closet away from toddler and husband eyes!

I went back to work today for the first time since Friday before Christmas. It was tough, not gonna lie. I enjoyed being out of the house, but it wasn’t even 30 minutes into my day when I started yawning and struggling to focus. Four hours isn’t long at all until your brain is battling you and your drugs are making you a hot slobbery mess!

Work itself was a minor challenge mentally but I think I got everything taken care of and in order so I can finish off the week with success. I’m being optimistic!

Don’t tell him I said it, but I have a pretty awesome husband who takes great care of me behind the scenes. My mom took me to work, he and Katura picked me up. I was fed, and then taken home so he could go take care of the important stuff. 

Back up — had a great convo with a coworker that has experience with brain stuff and surgeries. She gave me great advice on what to do to be my own advocate and get all of my records. Thank you!!

So that’s what Shawn is doing. He’s gotten me an appointment with a doctor next week. From there it is predicted I’ll be referred to a neurologist in a different city. If you read my IVF posts you know I won’t do serious medical things here. I want the BEST care!!! My prescription is being refilled which means more fun of drooling Ronda at work for a few more days. Woohoo! Party at my desk! You’ll know mine by the half naked Aquaman doll next to me. I’m not kidding. We are also getting all of the records and MRI scans from my ER visit. Our goal is to have it all so we can be proactive in getting my fixed!

I cannot keep living like this. I have new running shoes that need to get dirty. I’m in a new running skirt that hasn’t experienced sweat yet. There is fresh air out there that I want to absorb. My body just feels like a limp noodle. I have no strength or energy. It’s an effort just to sit up or get up to go to the bathroom. Heck I even resorted to a bath versus a shower the other day because I couldn’t stand up. I’m gonna need a new bed at this rate!

Things are hopefully moving in the right direction and I just cross my fingers it will be faster at finding what’s wrong than the year long Ménière’s Disease diagnosis process!

Tuesday, January 1, 2019

This Post Brought To You By Valium

So here’s how 2018 came to an end for me...

At the very beginning of December I was feeling pretty so-so. My mind was focused on a half marathon I was so excited to finally get to run after years of hoping to. I was scheduled for a 10 miler as my final training run, but I didn’t feel right. I was dizzy and leaving my house for 10 miles alone didn’t feel safe. We borrowed my mom’s treadmill so I could try to do it in the safety of my home with family nearby. I ran 3 miles. My legs were great, my head wasn’t. 

The next couple of days completely changed my current way of life. Insane head pain that had me wincing and squirming in my desk t work. I couldn’t make it through my little 4 hour work days. “Migraine” was the easy way to describe it, but it didn’t feel like a migraine. At first I thought it was intense Ménière’s Disease symptoms like I’ve never experiment in the 15 years I’ve had this disease. I couldn’t walk without my cane. I still can’t drive. The pain was so bad I had to constantly lean back in a reclined position, which is rather challenging at work!

I couldn’t handle it anymore, and my husband took me to Urgent Care. Lesson learned, never say “headache” or “migraine” to describe unbearable pain because nobody will really listen after that. They sent me home with 3 prescriptions for sinusitis. Uh, what? No. The handout that I was given had this long list of symptoms. The only thing I had? Fatigue. Imagine 3 weeks of unbearable pain, you’d be tired, too! But I followed the orders of the PA and took the prescriptions in a good faith attempt that maybe he was right, but not one bit of me felt this was a sinus thing. 

Never feeling relief, a couple nights before Christmas I was back at Urgent Care this time with one of the doctors. I was the ONLY patient there, so I had a lot of attention. My
Husband helped me explain what was going on since I still have a hard time given the severity of the pain. In the end the doctor wanted me to get a CT scan to see if there really is a sinus thing happening or if maybe it is something else. 

Access denied. 

So great that we have insurance.... and some random person sitting on a computer at an insurance office can deny the request. Yeah, fuck you, bitch. It’s my blog, I can say it. 

And again I was sent home, this time with the advice that if I don’t feel relief in a day or two I should go to the Emergency Room because then insurance can’t screw me over and deny me the help I need. 

I tried. I didn’t want to go. Who wants to wait for hours to be seen and then possibly just be sent home without help?

Christmas Day was so painful. I could barely sit up to watch my baby open her presents. Once everyone else I just had to lay down all day. I couldn’t take it anymore. The next morning my mom came to get my girl and my husband took me to the ER.

Lucky for me the waiting room was completely empty. We didn’t even finish filling out paperwork and they were taking me back to my room. From there it’s a blur. 

I could barely walk at this point. I recall they would ask Shawn questions about me and my behavior. I had to do little tests like try to lush with my hands and legs. I failed the test of standing with my eyes closed. My eyes couldn’t follow anything. It was very quickly decided I was going to have an MRI as quickly as possible. 

A gal in training took 5 vials of blood from me. That was the worst. It hurt so bad and took so long. I had to remove all of my jewelry prior to the MRI and lost my nose ring in the process. Que sera sera, no biggie. I have had it over a quarter of my life, I can be done with it. 

We watched a lot of Friends on tv while waiting for my MRI, and I tried to stay bundled up under as many blankets as they would put on me. 

The MRI was about 35 minutes I think. It didn’t phase me and certainly didn’t feel long. I was probably way too relaxed given the set up and loud volume during an MRI!

I was wheeled back to my room where Shawn was waiting for me after making his way to the cafeteria for lunch. Lucky ducky!

And then the doctor came back. 

Good news was my MRI looked normal. “No brain tumors, and no signs of Multiple Sclerosis.” What??? They were worried it was one of those things? I was crying in my room before any tests had even been done, I’m so glad I didn’t know these were their concerns!

The thought, and I think what he’s hoping, is that there is inflammation in my brain and that is causing pressure on my inner ear, exacerbating my normal Ménière’s Disease symptoms. They loaded me up with drugs before sending me on my way, and said I am absolutely not allowed to work. 

Why no work? Here’s my life since the day after Christmas:

Wake up.
Eat breakfast. Take 5 pills. 
Shower. 
Put pajamas back on and brush my teeth.
Pass the f out for a few hours.
Wake up, with no idea what day or time it is.
Usually want lunch and find out it is dinner time. 
Take more meds.
Sit around like a drooling sloth, dozing off in my chair. 
Back to bed. 
Lather, rinse, repeat.

So as it stands, I am still loaded up on drugs but the doctor note says I can return to work tomorrow. I’m petrified. The pain has lessened a tad but it is still here and I can easily identify exactly where it is now. I still can’t drive. I work 4 hours. I haven’t been up and moving for 4 hours in an alert manner in I don’t know how long. 

I’m waiting to get assigned a new primary care physician. Turns out I slipped through their cracks when my prior physician left and they never gave me a new one. I guess I will see this new person then possible be sent to a specialist?? I don’t know. 

I just know this is not over. I would love to be able to do something like a normal person again. I would love to walk on that treadmill. I would LOVE to run!! I kid you not, when this started and I knew something was wrong in my brain, my biggest concern, aside from dying (I was ready to write my will), was will I be healthy enough to run with the Ragnar team I am captaining and Hood to Coast! 

No matter what I WILL be in those races! I just hope I can do them without a brain aneurysm or something!

So here’s to 2019, may it only get better from here!

Make sure you leave the hospital with cookies from the cafeteria. They are the best!!