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Every time we turn around it seems that something else is hitting else upside my head. I say that because my head is ALWAYS in freaking pain. I have a headache nonstop 24/7, and I don’t have any other way to explain it. I get that people that don’t have Chiari Malformation think that’s some sort of an exaggeration, but I promise you that it’s not. So, the fact that I am dealing with this freaking bacterial sinus infection, and possible fluid in my ears, on top of my normal migraines and Chiari headaches isn’t really helping things much lately. I haven’t been able to go for an infusion like I normally would, because A) you can’t go to the infusion center while you are contagious, B) this isn’t a normal migraine, so it wouldn’t work anyway, and C) I haven’t even been able to get out of the freaking bed to go to the damn infusion center to begin with. To top it off, I’ve been having pain in the top left part of my head, and it’s been incredibly tender as well off and on. It’s become painful to wash my hair in that spot, and to even move my hair or brush it at that spot. Then, when these pains are sharp, and I will also see stars at time, at or floaters, or whatever you want to call them. So, it’s been back and forth to the doctor non-stop and not feeling a bit better and not knowing what to do to help myself in the meantime.
I of course am going beyond stir-crazy sitting in bed, laying in bed, sleeping like sixteen freaking hours a day, and losing track of time. So, Shawn and I decided last week that I could try and venture out and at least try to do my physical therapy. Now, my physical therapist is amazing, I think that I’ve said this before, and if you are in need of PT, then you should seriously look for Kelly at QMG pt. So, Kelly is taking it pretty easy on me last Thursday, and I’m laying on the table doing my clamshell, I really don’t know what else to call it, when all of a sudden, the sharp pain happens. So, the pain happens, and the floaters happen, and Kelly is watching my eyes I guess and says that my pupils become constricted. Pupil constriction and dilation are controlled by the sympathetic and parasympathetic nervous systems in the brain. Normally, when the parasympathetic nerve is activated, it causes pupils to constrict, or narrow. When the sympathetic nerve is stimulated, pupils dilate. Aren’t I the lucky one? Now I have my eyes constricting on top of my glaucoma. Lol Ugh. Anyway, Kelly cut my PT short, which I knew she would, and then told me to call my neurosurgeon Dr Reynolds.
So that’s what we did, we left physical therapy and did just that, called the NS office and talked to the nurse. She set us up for an appointment with them, and also suggested calling my neurologist since we couldn’t get into them until the 31st, and that was my next call. Dr Hafez’s office wanted me in there the very next morning. We were there bright and early at 9:30am, which took everything Shawn had to get me up and there I promise you. It’s hard enough to get me out of bed by noon or 1pm most days. Anyways, there we went, off to the doctors, and what we thought would be a quick appointment, because most of them with him are, ended up being a 3-hour multiple appointment. Shawn, the doc and I talked, and he said he thinks that I have Occipital Neuralgia, and need to have an Occipital Nerve Block, or multiple nerve blocks, but that he can’t do them, and he’ll send the information over to my neurosurgeon and get me set up for them. In the meantime, however, he said that we needed to focus on getting me over this infection, and that it looks like I have fluid in my left ear, so he contacted the ENT office across the hallway and wanted to send me immediately over to them to have me seen.
Now, I have a bit of a history with this ENT office, and I prefer not to go to them, but I don’t really have a choice at this precise moment, because the ENT that I had been seeing through Blessing has left, and I haven’t gotten set up with a new one yet. Anyway, long story short, back when I was going through all of my testing trying to figure out exactly what was wrong with me, and had not been diagnosed with my Chiari yet, one of the two doctors there told me, before any testing, that he thought I needed to go for a MRI because I had MS. Flat out, with no tests ran, and in a room with none of my family present, because hey, I thought I was just there for a hearing test. Boy was I ever mistaken. Anyway, it was a horrible, horrible day, and I left that office crying my eyes out, scared to death, and thinking that I had MS. Having to call my husband at work to calm me down, cause hey I was of course freaking out. I mean, who wouldn’t be? I did go for the MRI of course, but refused to go back to that doctor, and instead had the results sent to my primary doctor at the time, Dr. Love. Y’all know him from my blog I’m sure, the best doctor that ever was in my opinion. At one point I did have to go back to that ENT office, and unfortunately the other doctor there called me pleasantly plump, well pleasant, and obese, which feels like the same damn thing, in a letter to Dr. Love, which is who I had the unfortunate pleasure of seeing on Friday. He sent a letter about seeing me to Dr. Hafez, and once again he stated that I was a pleasant obese woman. Seriously. WTF! Like, what does that have to do with my ears, nose, or throat for that fucking matter. I understand that I may be overweight, but honestly, it’s none of his fucking business. Also, it was mentioned to him before that him saying that was an issue for me. So now I’ve printed a copy of the letter and I’m trying to decide if this is something that I should report to somebody in charge of the clinic. I just really don’t understand how this has any bearing on him treating me at all.
I digress. I finally got back into counseling this week, which makes me feel a thousand times better, I’m telling you, that you need to take care of your mental health as much as your physical health folks. Whether that means you need to take time and read, have coffee alone, having some time alone to veg out and watch our favorite tv shows, or listen to music, whatever it is, do it. For me, it’s going and spilling all my bullshit to my therapist, talking it out with Tish, having her talk back, and helping me make sense of all the crap in my life. No matter if it’s stuff with my family, or internal stuff. We talked about all the stuff that’s been going on in our lives, and how we are dealing with it, and how thankful and lucky I am to have my husband by my side as I go through this.
I’ve been basically homebound except for doctor’s appointments for the last month, and I’m thinking this month won’t be any different. Friday, I have a cat scan of my sinuses to see what’s going on with them, and why I’m not getting over this frigging infection. I’m supposed to go back to the ENT for these results, since he chose to call me pleasantly plump again, I don’t think I’ll be doing that. Then next week, they’re coming to my house to take blood for the patient study I’m taking part in. We’re also going to the Iowa City VA one day next week for Shawn, and I’ve got my appointment with neurosurgery. So, next week is kind of a busy week. I’m hoping that my body can keep up next week, I’m guessing that by next weekend I’ll be in bed for at least three or four days straight.
Sorry for rambling on for so long with these one folks, we’re just trying to do better at keeping this thing updated. Probably won’t write again until after everything is done next weekend, and who knows if it’ll be a video or an actual blog, and if it’ll be Shawn or me. Hell, this one alone took me hours to write because I doze off etc. lol Until next time y’all, and you know the drill, if you have questions drop them below and one of us will try to answer them as soon as we get around to it.