Still Sick

November 8th, 2019 No comments

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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Home/Life Maintenance

May 31st, 2019 Comments off

Just a quick list of things we’ve taken care of in the past month for future reference.

Bought a new Winex air purifier from Costco for the master bedroom.

Reorganized part of the garage.

Switched my car’s floor mats back to the fabric ones for the summer.

Repainted the numbers over the garage.

Purchased vehicle stickers and Wookie’s city tag.

Planted wildflowers in boxes on the patio. Used Dollar Tree ones so who knows what will come of that.

Joe’s dad visited for a few days.

Purchased license plate sticker for Joe’s car.

Had HVAC inspected/cleaned. Unfortunately they couldn’t find source of musty smell I keep noticing. So $90 not necessarily well spent, but I guess after seven years it was due for an inspection anyway. They didn’t think our air ducts were dirty enough to justify a cleaning so $350 saved I guess?

Categories: Family, House & Home, Life, Pets Tags:


April 15th, 2019 Comments off

The highlight of our weekend was a trip to Mariano’s on Saturday. We rarely go there, but decided to check it out since ham was on sale. Their bakery section is amazing, and I couldn’t resist a strawberry rhubarb pie for only $4. It didn’t have as much filling as the Bakers Square pie, but it was tastier and a 3rd of the price. I definitely need to keep Mariano’s in mind for future parties due to all the yummy cakes, cookies, and pastries they have. Their prices are pretty reasonable too. Maybe not as much on the produce, but on a lot of other things. We ended up grabbing a deli sandwich and a cup of cream of chicken soup from their soup bar to take home for lunch. The soup in particular was really good!

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Two Weekends of Movies, Dogs, and Apple Stuff

April 8th, 2019 Comments off

Last Saturday (03/30) we saw Us with both my brothers (and R) and afterwards they came back to the house to hang out for a bit. The movie was… ok. I don’t agree with those who have said it was better than Get Out, but I would like to see it a second time to see what I missed the first time around.

Joe has been traveling for work a lot, so he took a Friday and Monday off so we could have a three day weekend together.

Friday (04/05) we saw Shazam which is hands down the best DC movie I’ve seen yet. I really didn’t care for Wonder Woman or Aquaman (so cheesy and just bad), but Shazam was interesting and humorous. I was shocked to find out, as we sat down in the theater, that it was over two hours long, though. I found the beginning a bit slow, but overall the pacing was good. After the movie we had lunch at Anyways and I got the shrimp avocado tacos again which were delicious just like last time. Joe was going to get the meatloaf but our total wouldn’t have been enough to use our $5 off coupon, so he changed it to beef stew. After the waitress walked away I noticed the coupon was only good Sun-Thu so I told him he should change it to the meatloaf but he decided to give the beef stew a try anyway and ended up really liking it. I got to try some and I agree it was delicious. When we were finished eating the waitress asked about the coupon (I had told her I had one earlier before I realized it wasn’t good) and I told her the issue. She honored it anyway which was nice!

Saturday (04/06) we spent some time hanging out with K and her dog at her house. We ordered Thai food for lunch. I was surprised to learn she likes Pad Se Ew just like me since she’s very much about eating plain food. After lunch we took the dogs for a walk since it was so nice outside. Once we got home from K’s house, Joe cleaned his car and I did a little light cleaning since I skipped it Friday. I like feeling accomplished, and keeping on top of household tasks helps. I also backed up my phone in preparation for an Apple Store visit on Sunday to replace the battery now that Apple supposedly allows this even with third party batteries installed. I couldn’t get a representative online to confirm this, however, so a visit to the store was necessary.

Sunday (04/07) we arrived at the Apple store before they officially opened at 11 am, which was my appointment time, so we walked to the Starbucks nearby for Joe to grab a drink. It was raining out which stinks since temperature-wise it was nice out, and the store is part of an outdoor mall, but we had umbrellas so it wasn’t too bad. The Apple genius confirmed they do now replace third party batteries, but they can’t do it unless the battery is at 50% or lower. Well, thanks for telling me that ahead of time! My battery was at 98% since I had charged it that morning. They offered to take it in the back and replace the battery once it ran down, but I was not having that. Instead, I turned the screen to always on, at maximum brightness, turned on the flashlight, and starting playing Tsum Tsum. We left the store and went to a food court area while I drained the battery. It only took about 45 minutes because the battery sucks. So much so, that once it hit 48% the phone just shut off (it has been doing that for about a month now). So back to the store we went to have them replace the battery. That took another half hour so we spent that time wandering the mall. All total it took two hours of our time because they can’t warn you about this stuff beforehand. Infuriating. Luckily we didn’t have other plans that day at least.

On the way home we stopped at a new to us BBQ place called Fire Water BBQ. I was stoked about their prices, but the food itself left much to be desired. They have five different sauces and I only barely liked one. The brisket was dry and bland and the sweet potato fries were too sweet (they sprinkled them with cinnamon sugar). Won’t be going back there.

At home I did a little shifting of some clothes in the closet and Joe went through some of his t-shirts and jeans. Between the two of us, we had a garbage bag full of clothing to donate.

Today we made a point to get up early (6:15 am) to help get us back on schedule for work tomorrow. We did some grocery shopping before going to Savers. Joe wanted to look at hoodies and I wanted some long t-shirts to go with my leggings and a dress to wear to a friend’s wedding. We struck out on all fronts, although I did get too long-sleeved shirts I liked.

We also stopped by the park district to purchase an annual pass for the dog park since it’s finally starting to get warm enough for us to go there again. Haven’t been there since November, but this year I decided not to wait until July to buy the pass at half price since we should get a lot of trips in prior to that.

We decided to grab lunch at Chilis which we both enjoyed. They have some really nice $8 and $9 lunches and it didn’t cost us anything out of pocket thanks to our Discover cash back rewards. I’m surprised we don’t go to Chilis more often since we’ve liked everything we’ve ordered the last two times we’ve eaten there. Speaking of Discover cashback, we used those rewards to get an Old Navy gift card on Sunday because Joe founds some light-weight hoodies there he liked. Gotta love that!

After lunch we came home and I took Wookie for a walk while Joe straightened up his side of the garage a bit. There’s more to be done, and my side needs a decluttering again as well. I plan on getting rid of two aquariums and all the hamster-related stuff I have because if I do get small pets in the future it will be rats, not a stupid hamster. Might as well clear the space all the hamster stuff is currently taking up!

I also worked out on the elliptical which makes three days in a row. I really want to lose some weight before the summer because I feel too lumpy in all the wrong places.

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