First one to fall asleep at a frat party

Good Morning!

Well all, it would appear that I have liquid in my ears. Or, at least I did. It seems to have drained but my ears still hurt. BAD! I've been complaining about this for four months and not one person caught fluid in the ears until now. Even still, no one thought, "Perhaps we should send her to ENT (Ear, Nose, and Throat doctor) since it's been this long". To make it more fun, they took away the only migraine medication that actually managed the pain somewhat.

I suppose it's good that she took that medication away because if the issue is two of the four possibilities causing the ear pain, caffeine can trigger the ear pain or a flare up. This is so sad because I love coffee and Lupus is known for causing EXTREME fatigue. I could snort instant espresso crystals with my left finger and right nostril with my right arm hooked up to a coffee IV while sipping a nice big cup of freshly pressed dark roast coffee and have about 10 minutes of real energy on my rougher fatigue days. Plus coffee is just wonderful. Quite often, the smell makes me nauseous and this hurts my heart. 

The other migraine medication option I won't do. The pharmacist wouldn't give it to me until she talked to the doctor because it was such a high dose she thought the doctor screwed up. It's a beta blocker that can cause my blood pressure to drop so low I pass out. Especially at the dose she tried to put me on. Well that'll be great for driving. All I need is to pass out with my kids at home. Will they call the police? Not if I'm breathing and they know it's my medication that did it. No. I'll wake up looking like I fell asleep first at a frat house party. And my 8-year-old doesn't always pay attention to "washable" versus "permanent" markers. I'll wake up with a mustache, GOD knows what else drawn on my face (the eldest may draw a penis because #autism), and my hand in warm water. 

I'm supposed to be on a narcotic prohibitory medication so narcotics aren't an option. Not that I'm asking for those anyway. I'm not currently on that particular medication. It's been a week now since I've had it because the compounding pharmacy seems to have misunderstood the difference between mailing versus pick up. It should be in my mailbox today. I really just want answers and to be able to function. So, I went to the patient advocate to start and also, fast track my way to ENT since the, at least, six doctors I've seen couldn't seem to figure out I needed to go there.

Yeah, that was about as useful as a vibrator without batteries. I got this cranky woman named, Carol, who was as uninterested in actually helping as I was being cut off left and right whilst trying to explain the "express lane to ENT process", told to me by ENT, you know, since it has been four months of freakin' misery at the hands of their ineptitude. She was supposed to call me back. She didn't. So, I changed insurance and no longer have to wait for the long referral/approval process before I can get help, eventually, mostly likely post mortem. Now, I will still need doctor's referrals for some things but a message to my Rheumy makes that pretty easy. Oh yeah! I see an ENT doc next Wednesday. Imagine that! Suck it Carol! 

Still waiting for my referrals to go through. 

Now I'm in the market for a new GP. I find a prospective clinic with good reviews and GREAT hours so I'm stoked! I go in and holy shit Batman! The search is still on. If you have a chronic disease or pain disorder or whatever, you know..... If you meet a new doctor, you have to gather up your personal pharmacy because you're never going to remember everything you have between dosages, your daily meds, and your specialty meds for "special occasions" like when the world starts spinning (Meclizine!) or when the gastroparesis causes reflux (ranitidine!). I had a paper bag full of pill bottle rattles for patient/doctor show and tell. I knew there was a problem when the nurse didn't know any, nope, NONE of my medications or what they were for. WHAT!?! There was a cornucopia of drugs. No, nothing to brag about but this is my life Ladies and Gentleman, and I'm more of a naturalist. She should have known at least one of them. 

Then the doctor enters the room. He looks at me and asks, "What can I do for you?" 

I'm thinking, "He's fucking with me", but I say nothing, because I genuinely think he's kidding.

He asks again, "What can I do for you?" 

This man is older, salt and pepper hair, his stomach is stuffed under is pants and reaches his mid thigh. He is a short, "rotund" man with a reddish face, and he's asking me what he can do for me because he clearly didn't look at the chart; which is his job. Did I mention I'm not feeling well, I'm back on prednisone and my patience level is non existent?

I look at my husband and raise my voice, "I don't know. Honey, what can he do for me!?!" 

My husband didn't get to say a word because I started going OFF about my symptoms. The doctor's attitude went from Asshole to OH...ok. He stated that my ear pain without infection isn't normal even with fluid in them. I agreed and I offered up possible reasons for the pain ranging from Vestibular Dysfunction to enlarged Adenoids (considering I lost my tonsils this year already because my lymphatic system was attacked). He agreed they could be possibilities but claimed he could do nothing for me. I asked if he could look at my sinuses because my mother had sinus surgery due to polyps and cysts. The doctor told me he wouldn't trust their X-rays because the picture isn't very good even though it's better than it use to be. Clearly, I won't be going back because I value life. 

These headaches and the ear pain has made everything difficult. It's difficult to leave the couch, focus on anything for long from a tv show to writing or even holding on to a long conversation. I'm doing the best that I can but it's definitely difficult when you cannot get the medical care you need and deserve as a fellow human. What makes me more upset is these people don't consider what they're doing to my family when they don't help me. My youngest son is so scared because of what's going on with my head and the pain he cries and doesn't want me to go anywhere. ANYWHERE! He's terrified of my being out of his sight while at home and sat holding on to me yesterday for hours until he passed out on the couch next to me. But, they don't see that. 

I have a plan of action when I go into my ENT appointment. I'm going to do the same thing I did with my eldest son's Kindergarten teacher just in case they aren't feeling like helping much. When my eldest son had behavioral problems in class, his teacher, Mrs. C, would encourage me to have his medication increased. The doctor would do it and my son was overdosed. He nearly had a heart attack at five-years-old so, I took him off of it. It did nothing for him anyway. But, I didn't tell his teacher. I conducted an experiment. Will his behavior improve if she believes his medication was increased. You know what? Throughout the year my son was increased about 10 times, except not really, and every time I told her about his increase, his behavior was consistently better for weeks at a time. 

I will go into my appointment and provide them with a list of possibilities that my male doctor, who use to be an ENT (the dude I saw yesterday use to be an ENT) believes could be causing the issues with my ears from enlarged adenoids to Meniere's Disease. I mean, when I told the guy what I thought could be the possible diagnoses could be, he agreed they could be, so, I'm not wholly lying. Doctors seem to take things like this better from other doctors, especially male doctors for some reason, than they do patients. I've never been a male patient to know how male patients are treated so I can't say anything there. 

I have to get ready to instruct cardio. I feel like crap but, fake it till you make it. Or, fake it until you get home and sit back on the couch after smoking pot because that and Tylenol are all I have to help with the pain. My kidneys are on the downhill right now so I have to watch the NSAIDs until they stabilize again. Plus, I'm on prednisone so no NSAIDs whilst on prednisone. Have a great day everyone!