Month: November 2019

New Computer & iPhone

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I’m getting a new Dell computer (ordered it today) and iPhone (will order it this week) and I don’t give a shit. Normally I’d be so excited but I feel like total garbage and to me they are just necessities at this point as they are both getting really slow. The computer is nine years old and my iPhone 6 is five years old.

The original plan was to get the latest/greatest iPhone in anticipation of a spring 2020 trip to Disney World since I really really want to experience the Flower & Garden show at EPCOT in person. That’s no longer happening. So instead of getting the iPhone 11 Pro I will probably just get the regular iPhone 11 that’s almost half the price. What the hell can I really photograph when I’m a recluse anyway?

I feel worse and worse each day. I am experiencing more pain throughout my body so either the EBV is real and is attacking me, I have Lyme disease, or I really do have Fibromyalgia and it has decided to kick in now. I tend to get a bit achy overall every winter but NOTHING like THIS. Plus the ear stuff is just ridiculous. The left ear flutters to weird noises and the right one puts a phantom noise on top of any fan/motor related noise. Never in a bazillion years did I think ears could do such crazy and horribly annoying and anxiety-inducing things. I did my best yesterday to ignore the weirdness but today the second I woke up I was incredibly anxious and I don’t even know why (possibly hormones). I pushed myself and went out to a total of FOUR stores but it was really hard because the noise in them was so overwhelming to me. It’s like my central nervous system is completely broken and everything is irritating it. It makes me so sad that I have no control over it.

I am so frustrated and depressed that I can no longer even keep up with housework due to the pain and fatigue. I like keeping a clean and organized house and in my eyes it now looks like hell (even though most people probably wouldn’t think that at all). Joe has been doing almost everything now which is unfair since I’m the one not working. And because of the neck and shoulder pain I have to limit my device time so I really have nothing to do most of the time. So I’m bored and in pain and every day feels way too long. I would sleep more IF I could sleep but then I get the head pain which is getting worse already even though I had trigger point injections less than a week ago. Can’t I catch a break?

I still can’t wrap my head around what is happening to me and how terrible it is living inside this now broken body. I was used to having issues come and go and even have some things last awhile but this is nothing like anything I’ve ever experienced and I really don’t know how I’m supposed to adapt if it doesn’t ever get any better. I haven’t given up the pursuit of answers, of course, but damn if I’m not feeling hopeless after seven months of increasing pain and auditory issues. I can NEVER relax or feel comfortable these days. I miss that so much. I miss my old life and the old me. I am praying for a miracle at this point.

Still Sick

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I’m still not well, and have seen more doctors since my last post. I’ve stopped the gluten-free dairy-free diet since I wasn’t seeing any benefit, except for maybe less acid reflux.

As it stands now, I have two main concerns that are causing me a lot of distress:

Neck/shoulder/head pain that only allows me to sleep about 5 hours each nice. I can only sleep on my back because any pressure to the side of my head causes my entire head to hurt and then my arms and sometimes even my legs feel too heavy and achy. All of the pain and weird feelings go away once the pressure is relieved, however. Seems when I explain this to doctors it’s unusual. I had a neurologist tell me it’s fibromyalgia but I doubt it since I don’t feel all that achy otherwise.

Ear issues like you wouldn’t believe. I’ve been using hydrocortisone cream in my ears for a week now to help with the itchiness but the tinnitus in my right ear seems to evolve constantly. The regular high pitch sound and head buzzing has largely gone away but was replaced by a weird low “siren” sound that increases in volume when I yawn. It also has started reacting more to certain fan-like noises such as the fan in the bathroom, the furnace, the microwave, and the freezer and cooling sections at the store. It is really freaking me out and I pray it’s only temporary. The ear fluttering has mostly gone away thank goodness, and my hyperacusis is much better, although some things still feel too loud. What’s weird is sometimes things seem too quiet too. I feel like I have some brain damage with all this going on.

Other things that I’ve noticed:

Painful acne, mostly on my scalp and neck.

Feeling overstimulated in public places (had a panic attack from being in Kohls for ten minutes to do an Amazon return).

Near constant internal trembling. Could be my anxiety, I am really not sure.

My periods are just weird. They are never on time, I don’t have ANY cramps anymore, and they tend to be less heavy but last longer. I still suspect hormone imbalance which I plan to speak to my doctor about during my gyno annual exam later this month.

I still don’t know if I believe in reactivated EBV after seeing an infectious disease doctor who tested the EBV DNA in my blood and it showed it wasn’t replicating. My antibodies are high, though, which some doctors claim means my immune system is primed to fight EBV and some say it means I have a reactivation. Who are you supposed to believe? I still wonder if I have Lyme disease or some other tick born illness but testing is so unreliable I don’t know what to do.

I saw a dentist who is highly trained in TMJ issues since I’ve been noticing clicking in my jaw and I know I clench my teeth at night. The night guard from the regular dentist didn’t help at all, and seemed to make things worse in fact. This new doctor did a bunch of tests and said my bite is off and my lower jaw likely needs to be moved forward because it’s probably causing me difficulties breathing at night which causes the clenching. I am having a CBCT scan on Monday to get more answers. It’s to look at the jaw but I’m hoping it captures my sinuses and ear as well since I still think I might have eustachian tube dysfunction which could have been triggered by my rapid weight loss. I’m also leery about changing things to my teeth and jaw and making things worse. I did read the grinding can cause the neck and shoulder muscles to get tight, though, so it’s a whole chicken vs egg situation since I’m not sure what is the main issue causing the others.

If I could just find the root cause(s) of my issues, I could then address them and feel better! I am so tired of not being able to sleep on my sides, or get enough hours of sleep daily. I’m tired of all the hearing abnormalities and my inability to go out in public without panicking. My entire life has been up in arms since April and while some things have improved, I’m still miserable on a daily basis. I wish doctors were more helpful, but they only see within their own area of expertise and cannot seem to look at you as a whole. Even my integrative doctor has been useless as far as I’m concerned. She’s great for prescribing meds or getting blood work done but I feel like she doesn’t have a clue what’s going on with me either. It’s so frustrating because I just want to feel like a normal person again instead of feeling anxious constantly. I can’t even take pain medication or muscle relaxers because they make my tinnitus worse. It really complicates matters even further. I go for another round of trigger point injections later this month (I had some last month but they didn’t knock out the pain as much as I had hoped). I just wish I knew why the muscles are so tight and how to loosen them. Stretching and physical therapy seem to make things worse. I feel like my body is completely ass backwards.