No Improvement

January 23rd, 2020 Comments off

Caught a cold from E in December (I think it was him, since I don’t go out much and he was over for Christmas and seemed sick) which turned into bronchitis. Luckily it eventually went away on it’s own but I was still sick on my birthday so I removed it from Facebook; therefore I only got a few birthday wishes because if FB doesn’t remind people they completely overlook it. I’m guilty of the same thing so I wasn’t even sad about it. I feel too much like shit to even care about the holidays or my birthday. We didn’t celebrate it and I told everyone not to get me any presents because it’s irrelevant at this point. Without my health I am nothing.

The physical therapy doesn’t seem to be helping and we’ve tried exercises, massage, trigger point release, and dry needling. Trigger point injections at the pain clinic would help a bit, but it’s reached the point where I don’t even know what to have them inject, so I cancelled the appointment. Kinda regretting it now that the pain while sleeping has increased.

I saw a naturopath my PT suggested and she just put me on some new supplements. Only been taking them for a bit less than a week and haven’t seen any changes. Still horrible pains in my arms while sleeping that are creeping down into my upper back now. Also the head pain is coming back. I’m also getting twitching in my muscles, mostly calves at the moment. My feet often burn mostly at night and then for the first few hours I’m awake. The tinnitus is slowly getting louder, and my ear is once again fluttering in response to toilet noise (and this keyboard right now for some reason). WTF?!? Oh, and when I look at purely white things I see some traces of yellow/green color ever so subtly.

I’m starting to suspect I might have Lyme disease. I just realized the tests I got through Quest that I thought were western blots were actually ELISA as they only proceed with a blot if the ELISA indicates infection. F me! I might have to pay a bunch of money out of pocket to get testing through a more thorough lab that insurance doesn’t cover. I’ve been doing SO much research on this stuff and there’s so many conflicting theories and different treatment protocols that it makes me sick to my stomach to even think about it. Honestly, suicide sounds much easier. I know, such a defeatist attitude. But I can’t handle all this. It’s just too much. I haven’t felt well in over nine months and nothing has indicated to me that this will be getting better anytime soon. I feel my “best” at night and work on thinking positive thoughts and visualizing myself getting well but it isn’t helping, at least not yet. It’s so depressing.

I don’t feel like Joe and I are partners anymore. He’s my caretaker because I don’t have the energy to take care of myself. I am down to 100 lbs and I hate food because everything I eat is supposedly inflammatory so I’m limited to meats, fruits, and veggies, although I do eat rice just to keep my calories for the day over 1200. I hate my entire existence and long so deeply to go back to how I felt before, even with my little weird annoying health issues. At least they weren’t disabling like this! After all this time I’m still struggling to wrap my head around what’s happening to me. It’s like a waking nightmare.

I’m just so sad that at the age of 44 this is what my life is like. I can only hope SOMETHING eventually helps.

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New Computer & Phone Update, Plus Health Stuff

December 11th, 2019 Comments off

So, I do love my new gadgets, although they aren’t getting as much use as they would if I was feeling better. The iPhone 11 camera is pretty good even in low light and surprisingly, I don’t miss the home button at all. I like swiping up to leave an app, which I just found out my iPad does too even though it has a home button. As far as the new computer is concerned, I got an SSD drive which makes bootup soooo much faster than my old computer. Even Chrome loads quickly with my pinned tabs so it takes the frustration out of having to turn on the computer to do certain things which is nice. I just can’t spend time on either the phone or computer because every damn thing aggravates my muscles. It’s like I’m literally falling apart.

I started with a new physical therapist yesterday and she was the first person who hasn’t dismissed the idea that my tinnitus could be aggravated by my tight muscles. She is also a TMJ specialist and showed me how irritated that muscle is in my mouth. OMG I’m in pain today from my exercises and my ears and more aggravating but I’m so hoping this is only temporary. I really need to find a way to get back on track health wise. I cannot live like this indefinitely!

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New Computer & iPhone

November 24th, 2019 Comments off

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.

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Still Sick

November 8th, 2019 Comments off

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.

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September 6th, 2019 Comments off

Just so I have it in writing, or in case anyone actually checks this site periodically, the reason I haven’t been posting is I’ve been sick. Like really really sick. Like I had to quit my job and have been mostly homebound (other than doctor appointments) since June. I’ve had a few good days here and there where I almost felt normal again, but mostly something is “wrong” every day, whether it be constant internal shakiness, nerve pains in my head, my ears feeling completely clogged, or my right ear tinnitus acting up and causing me to feel suicidal.

I blame all of this on my former workplace, by the way. They were stripping and re-staining office doors (because they’re too cheap to buy new ones) in an un-ventilated space in our building. For whatever reason I reacted badly to it. I repeatedly asked them to do something about it and they didn’t. This went on for two months before I made the tough decision to leave, but by then the damage was done. Hindsight tells me I should have a) called OSHA and b) quit much sooner when nothing changed.

In any case, since then I’ve been to the ER and tons of different doctors trying to pin down why I feel so bad.


MRI – clear
Neck x-ray – clear
Chest x-ray – clear
EKG – clear
Allergies – minor dust mite, nothing else
Celiac – no sensitivity to gluten
Vitamins & minerals – all within range except vitamin D was low (23)
Thyroid – no issues
Scope up nose to check eustachian tubes – no inflammation
Epstein Barr – elevated IgG (VCA, EBNA, and Early Antigen) and negative IgM
Antinuclear Antibody (ANA) – 1:320

The only thing that came of it was that I have reactivated Epstein-Barr virus, and I only learned about this via an integrative doctor (who is treating my brother for Lyme disease) as the two Western doctors I saw (a nurse practitioner and a rheumatologist) both interpreted the test results as being a past infection. And yes, I did my research, and my current doctor was right based on what is on the internet – the virus reactivated. I assume it was either from the sinus infection that the chemical exposure kicked off, or the stress of dealing with (at the time) an unknown illness and missing so much work and not getting the support I needed.

In any case, I’ve been on gluten-free and dairy-free diet since mid July in an attempt to lower my systemic inflammation as well as taking supplements to boost my immune system in an attempt to put the EBV back into dormancy. It lives in 95% of the population and never goes away (much like chicken pox). The problem with the supplements is I can’t tell if they’re really working because some days are better than others.

What I’m taking:

L-Lysine – 2000 mg daily (previously was 3000 mg)
Vitamin C – 1000 mg daily (previously 2000 mg)
Vitamin D (with Vitamin K) liquid – 1000 IU daily (previously 1000 mg)
Probiotic – Culturelle daily
Magnesium Glycinate – 450 mg in the evening
Melatonin – half mg at night to fall asleep and sometimes another 1.5 mg if I wake up in the middle of the night and can’t fall back to sleep

I also just starting taking a small amount of monolaurin, and plan to take lemon bioflavanoids once delivered by Amazon. I cut back on the supplements because I’ve been feeling this “brain buzz” that might be over-stimulation from them. I’m really not sure so it’s been a guessing game.

I’ve been seeing a therapist to learn CBT to try and cope with the ringing (also known as tinnitus) because it is by far the most distressing symptom. I’ve actually had it since July 2017 but it was less intrusive back then.

I’ve lost 35 lbs over the past four months because for a long time I had no appetite, and now that I do I have such a restricted diet that it’s way too easy to not eat enough calories. I don’t fit into any of my jeans and even my underwear is big on me because I’m about 108 lbs which is the lowest I’ve been since probably before or during high school. I wanted to lose weight – but not this way!

From searching this blog’s private medical entries I see that I’ve had ear and ear ringing issues on and off going all the way back to 2007 but I guess it never lasted long. It bugs me not knowing what caused the chronic ringing I have now. I know it’s not a tumor as that was ruled out in 2014. I have mild high frequency hearing loss (6000hz-8000hz) in that ear, but I don’t know what caused the hearing loss itself. The ENT who found the loss claims allergies, but my allergist said that’s not possible. Ironically at the time this dumb ENT told me that I started taking Zyrtec which I’ve since learned can CAUSE ear issues. Then again, so can pretty much all the drugs I’ve taken over the years, including ibuprofen, Nexium (and other acid reducers), Lyrica (which I only took for three weeks in early 2017), Xanax (which I’ve taken on and off for over a decade), etc. I’ve also been to about 9 concerts with no ear protection, listened to headphones for many years (albeit not loudly), and worked in a call center for years. Any of those things, or all of them combined, could have caused the hearing loss. Or a virus could have, like it did back in 2013 when my balance was affected in that ear. I really don’t know, but it’s distressing because things like Menieres Disease becomes a concern (although not one ENT has thus far has suggested it and I’ve seen four different ones in the last five years, so perhaps I’m worrying for nothing).

Bottom line – I have no idea if when I’m going to feel normal again. I have been to physical therapy and an acupuncturist because all my muscles in my neck and shoulders, and even the back of my head, are super tight. I also seem to have jaw issues from clenching at night, so I’m getting nightguard from the dentist next week. Will any of this fix me? I have no idea. It has been suggested some of this is anxiety based, but who wouldn’t feel stressed and anxious after going through all this? When I sleep at night I wake up repeatedly feeling like my head is being crushed by it’s own weight. Even though I slept 9 hours last night I feel terrible today. My ears felt super clogged in the morning but seem a bit better now, but regular every day noises seem to hurt them, like the clacking of my keyboard. It’s quite distressing because hearing is so important! You take yours for granted until something like this happens.

I try very very hard not to freak out and get too depressed, and all things considered think I’m doing pretty good currently considering I’m on NO medication, but it’s still very difficult. I mourn for my past life and what now seems like petty medical complaints in comparison. I also mourn for simple pleasures like being able to fall asleep on the couch. I can’t relax enough with my stupid ear to do that anymore. I pray for a cure someday, but in the meantime am hoping I’m not in for a multi-year battle for my health like my poor brother. I’ve always felt bad about what he was going through but you can’t really understand it until you’re dealing with it yourself. And then you go online and realize there are way too many people out there suffering with all sorts of ailments and it makes me very sad. I’m only 43 and would like to have a long life and enjoy my retirement and right now that seems unlikely. I hope I’m wrong and that this too will magically go away like all the issues I’ve had in the past. This is hard for me to believe, however, when I’ve never had an issue last this long.

One thing I will note regarding my new diet (which is SO NOT FUN) and the supplements – they seem to have helped my acid reflux and thus my panic attacks. I haven’t had one in two months now! So there is one positive result. I hope to be able to report back with more soon.

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