Last June Update

I wasn't planning on doing another post this month. I was thinking that monthly updates (over on Beautiful Basics) would be enough. What do you think?

However, I have a little bit of an update. I went to see my doctor last week and it was another good appointment. Even she was appalled at what the Rheumatologist had said to me and the notes he sent her. She kept apologizing. It's good to know that even she thinks it was ridiculous.

She upped my medications again and added in another. I'm struggling with the increase but I'm giving myself a full month before I judge it.

There's even more at night but this (with a filter that I thought was pretty) is what my mornings now consist of:

I feel like it's so much. I'm 31! And you know what I just realized? I have no clue what kinds of things lurk in these pills. Are there other ingredients that are in medications? Or is it just the active? I really don't know and that's kind of scary. Am I being weird? Probably. I guess all that matters is if it works or not and if it works I'm totally fine with it. The side effects right now are not fun, though.

My body feels so heavy. It's like my feet are in cement blocks and I'm having to go through my day dragging them. I've also started speaking really slowly and I've somehow developed a terrible stutter. I haven't been able to come up with words, even more than normal. It's kind of embarrassing. I've even gotten so upset at times I've just stopped speaking and started crying. I've always been shaking and tremoring more than ever. I have hope that I'll get past this in a couple of days.

I've been feeling pretty positive overall, though.

As for life, we went kayaking for the first time this season. I missed it so much and it felt so good to get out on the water. I hurt like crazy the next day but being out there in nature was good. We went to our absolute favorite place, which we end up going to at least a couple of times each season. It's one of my favorite places in the entire world. And, we had a little car trouble and ended up having to stop at the casino nearby and I won $220. How cool is that? I don't gamble, normally, but it was fun.

For the last bit of news, I'm going to the dentist tomorrow for the first time in an embarrassingly long time. I'm terrified. I don't know how having Trigeminal Neuralgia and going to the dentist work together but I'm hoping the doctor I'm going to see will know what TN is and how to work around it.

That's it for now. Please let me know how you're all doing, though. I'd love to hear how you are or how your summer is.

Seeing the Rheumatologist

I finally got to go see the Rheumatologist earlier this week. It was an incredibly strange appointment. He never examined me. He didn't want to run any tests. He didn't even really ask me many questions. He came in and told me I don't have Lupus, nor could I ever have Lupus. He told me I have Fibromyalgia. Good work, Doctor. I was diagnosed with that years ago, and again months ago.

I guess a 3rd diagnosis is necessary in some situations? He then told me that everything that's wrong with me is because my brain doesn't get enough deep sleep.

He then went on to ask me if I had ever been on any medications, including two that I'm on. When I told him I'm already taking them he seemed shocked. The man didn't even read my information that I took days filling out. He's going to recommend some things to my primary, like sleeping pills and more muscle relaxers.

He also suggested that I do less and spend all of my time resting. I guess becoming lethargic and lazy is a good treatment.

I don't mean to sound how I'm sounding right now but it really wasn't a good appointment. He came in and spent 45 minutes preaching to me about the same theory over and over. It was the kind of appointment that made me stop going to see doctors in the first place. I gave up on trying to ask any questions or get any real information out of him about halfway through the appointment. My Mom gave up even sooner. There was simply no point in even trying. I made it through the appointment without breaking down, nodding at the appropriate moments, thanked him at the end, checked out and then burst into tears as we walked through the front doors.

It wasn't that he took away my Lupus diagnosis. You know I never really thought I had Lupus in the first place. It was his better-than-thou, condescending, preaching, rude attitude. I don't know. I just don't react well to that sort of treatment. And the fact that he told me I've been sick (temporarily in his words) for the past 9 years because I'm not getting deep enough sleep.

I've been doing a lot of research lately, as per normal, and I thought maybe it could be Lyme Disease. I asked him if he could test me for it and he said, "oh no, I've been doing this for 20 years and I've never seen anyone with it so you can't possibly have it". What the actual hell?

He's the second doctor to tell me that my Fibro comes from PTSD from some event in my lifetime. They don't ask me if that could be, they just tell me that it is. I don't have PTSD. I haven't lived through some terrible thing that caused me to be sick and miss out on my 20s.

He also weirdly told me that my Trigeminal Neuralgia has nothing to do with anything but it's likely caused by Herpes. He clarified he didn't mean genital herpes, just one of the hundreds of strains of herpes that exists. He told me I should ask my doctor about the medications I'm already on and try them. I have NEVER read anything about herpes in my TN research and even my doctor admitted that I'm a near expert and know more than her about TN.

Guys, guys... get this: He looked at my Mom who very clearly, and very visibly, has RA and said she doesn't have RA but instead also has Fibro.

It's frustrating but I'm over it. I really am. Obviously, I just wrote this to share but I've moved it out of my brain. I don't want to dwell on things and let them fester so I've kicked this out of my mind. I just had to share how stupid it all is.