Monday, June 25, 2018

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.

Tuesday, June 12, 2018

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.

Sunday, May 27, 2018

May Update

I had to go back and look at what I posted last. It's been a while. The main reason for that is the fact that I've been feeling pretty upset about my healthcare and my health in general. The appointment I had in late March didn't go very well. I didn't feel heard and feeling listened to is what I need most. I had an appointment this week, though, that was the complete opposite. I felt more than heard. I felt understood. It was exactly what I needed and I'm really glad it was the way it was.

My appointment in March, other than being not good, was when I was diagnosed with a Lymph Node infection and was put on some pretty heavy antibiotics. Nothing changed after the antibiotics, though, and with how low my White Blood Count was I'm still a little concerned. I'm putting that to the side for now.

In my appointment this week I was really anxious, to the point of nearly hyperventilating in the waiting room. I even had a ridiculous and embarrassing bright red and angry rash all over my chest and neck. I worked really hard at trying to calm myself down and, if I may say so myself, I think I did a great job. I've been working on getting my anxiety under control lately. By the time I got into the exam room I was as calm as I could be. I had a wonderful nurse who made me feel even calmer. He was one of the best nurses I've had, actually. I have figured out that I just need to tell them straight off that they'll need to come back and take my blood pressure at the end of my appointment. It's always so high before I see my doctor and much more normal at the end. They always take it once and are so surprised to see how high it is and then laugh at how normal it is at the end. The waiting part is always the worst part. Of anything, really.

This appointment was to talk about my Fibromyalgia. Once my doctor came in we had a really good conversation. We actually talked and laughed, too, so that's nice and really helps me not feel so anxious. The actual medical part was great, too, and she ended up prescribing me the medication that I had wanted. I'd actually asked her if it would be right for me months ago.  I now take Gabapentin, which is also known as Neurontin. This medication is beneficial for both Fibro and Trigeminal Neuralgia. By the way, my TN was so much better with Baclofen until it wasn't. The pain has been creeping in and getting worse. I haven't been on it for very long (only 3 days) but I'm already seeing a difference so I'm hopeful that it will work well for me.

Funny enough, there are 5 of us in my household (animals included) and 3 of us now take it.

Anyway, it was a good appointment and I'm thankful that it went so well. I really can't handle bad appointments. After so many years with bad doctors I just feel like I'm incapable of dealing with that any longer. You know what I mean?

As for life, it's been pretty good.

The weather is finally nice and I've been spending a lot of time outdoors. The school year is almost over, which will be wonderful. I love having my Mom home for the summer. My Dad hasn't been well but we're working on getting him better. Hunter has been really sick, too. I took him to the vet and we didn't get any answers. I've been doing so much research but he's not getting any better. We're working on him, too.

When it comes to blogging I've once again fallen out of love with Beautiful Basics but I'm thinking after I get a few posts with a timeframe on them out that I can take a break and rediscover how much I enjoy it.

I have an appointment with the rheumatologist on the 4th so I'll be sure to update again after I see him.

Thursday, March 1, 2018

Discouraged

I'm feeling a little bummed out and discouraged. My blood tests came back a little weird so I had some more and every single test came back negative. Including the test for Lupus. I've always said I don't think I actually have Lupus but I know I have more than just Fibromyalgia and Trigeminal Neuralgia. Although, it's funny, the other day I was reading a new website about Lupus and it actually sounded like it could be me. Although, I've never had a remission. Lupus is all about flares and remissions and I've been in a flare for 8 years. So for now, my levels are off but with no reason why just yet.

I was feeling so hopeful because I felt that much closer to actually having answers but I now feel a little lost. It's been 8 years of getting worse and worse. We might all like to say that labels don't matter in real life. It doesn't matter what we are labeled or what we label others. I agree but when it comes to health it does matter. A label, a true diagnosis, would make me feel so much better. It would make me feel validated. It would make me feel whole. Not that I'm not whole now. I have a happy life with people who love me. I'm whole in that sense. I'm not whole medically. I need answers. I also need help. I want to be fixed and normal and whole.

I'm really hoping that once warm weather hits I'll start feeling better. I always feel a bit better in the summer but this is my first summer on all the TN meds and the Carbamazepine has changed a lot.

I finally got approved to go see the Rheumatologist. My appointment is in June. June! Oh well, I've waited this long so I guess I won't have any problem waiting 3 more months.

Tuesday, February 13, 2018

Excitement and Betterment

I just had an appointment with my doctor. I am so grateful for her. She is so kind and understanding. She's the kind of doctor I have needed all along. I had a 20-minute appointment that turned into about 40 because I had a lot of questions and ramblings. I'm nuts with medical research so I had a lot of things to talk about.

She raised my muscle relaxer and is working on getting the insurance to approve me seeing the Rheumatologist. I had a lot of blood work done and then we'll talk more about other medications next month.

It doesn't sound like we got a lot done but we really did and I feel good about. She is such a genuine human being who is easy to talk to and makes me feel not only listened to but heard, and understood. It was a good appointment.

I have a couple of other things I want to talk about because I'm excited about them. I was experimenting with food and seeing which foods made my body feel good and healthy and strong. I'm one of those people who believes that food is medicine and it should make us feel better, not worse, so I am now a gluten-free vegan. Every time I ate wheat I realized how shitty (hope you don't mind cursing) I felt afterward. I've been gluten-free for over a week now and vegan for only a few days, but I have no doubts that both will stick for good. I've been a vegetarian for 15 years-ish and going vegan is easy from there. I'm also going to cut back on sugar but I'm going to put that off for now. I don't want to throw my body into shock. I skipped adding sugar in my coffee yesterday (black isn't so bad) and I felt a little weird all day. Besides the sugar fiasco yesterday, my body already feels better and I'm excited to see what comes next.

I just placed a huge Vitacost snack haul, but to be honest I'm more interested in eating whole, clean foods like fruit and vegetables. We all need a chip or a sweet every now and then, though, so I'm eager to try everything I ordered.

Don't worry. I don't believe in preaching my food beliefs. Eat what you want and I'll eat what I want. I don't understand those vegans who are absolutely cruel to meat-eaters. We all get to make our own choices and I'm proud of mine. Don't ask me where I get my protein. I don't really care where you get yours so don't ask about mine. LOL! Have you seen the memes? They're true.

One thing I will say, though, is have you seen the documentary Forks Over Knives? I can't recommend it enough. It really changes one's perspective about food, even my former meat-loving, ice cream craving Dad. It's incredible.

Maybe 2018 will be the year of bettering my body and building health from the feet up. Maybe I will finally be able to get my pain and my health under control.

Wednesday, January 31, 2018

January

I can't believe I haven't posted since I shared how wonderful my Christmas was. January seems to have flown by so quickly and I'm just behind at everything.

I had an appointment with my doctor a couple of weeks ago and I have another one on the 13th of this next month. First of all, I'm always afraid to share my "medical knowledge" with my doctor but she is so open to whatever research I have done. TN is so rare and it's very possible that I'm the only case of it in the town where I live. It happens to 1 in 100,000 people and there are not even half that many people in the city where I live. In fact, I just looked it up and there were only 66,016 in the entire county in 2015. I doubt it's gone up much more than that.

With that being said, I've obviously done a lot of research about this fairly rare thing I've got wrong with me so I feel like I'm pretty much an expert on it. So, when we sat down I asked her if a couple of medications would be right for me and she prescribed one of them that day. She put me on muscle relaxers, 3 times a day. I was so happy in the first week because the pain was very nearly gone. It's slowly gotten worse again, though. I think the muscle relaxer does help but the dose absolutely needs to be increased. This particular med also helps with Fibromyalgia pain, too.

She's going to add in another medication during the next appointment but didn't want to put me on too many new things all at once. I'm looking forward to the next medication because I've read so many good things about how it has helped so many people. My Dad is actually on it, for another reason, and he thinks it helps a lot.

My pain is really bad right now, though. Really bad and constant. I hate Trigeminal Neuralgia. It's not right to have to live with this kind of pain.

Oh, and you know how have I have Lupus? Well, I asked her to refer me to the local Rheumatologist so I could start being treated for my Lupus again and my insurance company declined it. So, I'm disabled because I have Lupus (among other things) and have the insurance I have because I have Lupus but they won't let me go see a Lupus doctor? Isn't that just the most idiotic thing you've ever heard? I'll let you know what comes next. My GP said she isn't comfortable treating Lupus, which is totally fine because she's not a specialist, but I'm not sure what needs to happen.

I had pleurisy for about a week, which was incredibly painful. That's when the tissue around your lungs become inflamed and it makes it hard to breathe. I couldn't get comfortable and it was not a fun experience. I feel like I was super close to getting pneumonia but I started to take elderberry syrup and it might be magical. I don't know, though.

What else is going on in my life? I'm not really happy with Beautiful Basics. I'm not interested in trying beauty products which is a problem when you are a beauty blogger. I'm just so happy with the cosmetics and beauty products I currently have and want to use them all. I don't really want to have other things when I have gotten my collection down to only things I really want to have and use. The closet post that I was SO excited about didn't really go over well so trying to do more posts like that probably isn't a good idea.

Everything else is going well, so that's the January update. I'll let you know more about everything as soon as I know anything.

How are you? Did you have a good start of the year?