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Sick

September 6th, 2019 No comments

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.

Tests/Results:

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.

Categories: Health Tags:

Test Results

March 16th, 2019 Comments off

The ultrasound of my abdomen didn’t reveal any abnormalities, although apparently they couldn’t see my pancreas due to the excess gas in my belly. It would have been helpful to know that could be an issue beforehand. Hopefully that doesn’t end up being the one organ that has something wrong with it, especially because stuff like pancreatic cancer is very deadly. Moving on…

My urine was cloudy and had trace amounts of blood, but that is normal for someone with interstitial cystitis.

My blood work was mostly better than last year. My cholesterol went down, and that my ANA changed from homogenous to speckled and the antibody levels went from 1:160 last year to 1:40 this year, which barely registers as elevated. I’d like to discuss these changes with my doctor since they’re a bit perplexing. I’ve seen them remain steady or increase, but never decrease. I thought once you had autoimmune issues they didn’t just go away… right? I’m so confused.

The only thing that was in an abnormal range in a bad way was my Vitamin D. It was only 27 and needs to be 34 or higher, so I need to also talk to my doctor about taking supplements. I’m not sure if the 2000 IU pills I currently have are enough to make a difference.

Guess I’ll need to schedule an appointment on Monday.

Update 03/18/19 – My doctor’s office called to explain my test results and the nurse said my doctor wants me to take 2000 IU daily so I’ll start doing that. I’m not going to bother making an appointment just yet, although I’m still not convinced my issues that come and go are from Fibromyalgia. I mentioned a few symptoms to B’s girlfriend and she said he suffers from the same stuff. Could I have chronic lyme disease as well? I don’t want to have it, but it could explain everything from the panic attacks to losing some of my hearing and developing tinnitus. Based on some preliminary research it sounds like doctors really aren’t interested in diagnosing and treating it, and the test I took last year is known to give many false negatives, so it doesn’t necessarily mean I don’t have it. I just know know how much money I should spend trying to pursue it outside of the insurance. The thing that bugs me the most is feeling my as if my brain doesn’t work as well as it used to. I have so much trouble coming up with the right words for things, particularly in social settings. Not sure how much of that is anxiety, though. I might have to experiment with taking xanax and seeing whether that improves my ability to speak properly.

Also, speaking of insurance. It’s so weird because I always call ahead of time to get an idea of what something might cost me, and it’s never what I’m told. My doctor visit was supposed to be free, the ultrasound would be $17 (although the facility where I went claimed it would be $125 and suggested payment that day, which I declined), and my bloodwork was going to be $110. Looking at my claims, the doctor visit was $20, the ultrasound was $23.80, and my boodwork was $10.26. Not even close, but that puts me ahead so who am I to complain?

Categories: Health Tags:

Best Teeth Award & Couples Date

March 5th, 2019 Comments off

Friday (03/01) we went to a new dentist for our 6 month cleaning. We didn’t care for the one we went to last year because they seemed to overdo everything in an effort to get as much money from the insurance as possible. They did a whole head x-ray which, while cool, is overkill. Insurance only covers it once every five years, so that’s pretty telling. They also told Joe he needed a deep cleaning (and refused to do his regular cleaning), which the new dentist didn’t feel was necessary. So good riddance. I do like our new dentist, although their front staff is a bit questionable – I found a copy of someone else’s driver’s license on the back of the paperwork they asked me to fill out. There were also two copies of the same form so when the woman pointed out I didn’t fill out something, I had to point out I didn’t need to fill out the same form twice. *rolls eyes*

Our hygienist was ok, albeit a bit odd and intense. When she was pointing out some plaque in a bottom tooth, I acknowledged her by saying ok, and she responded “it’s not ok”. No shit, I was just trying to say something with your tools in my mouth, you moron. Anyway…

The dentist remarked that I have the nicest teeth she’s seen in the practice, so I’ve been lording that over Joe ever since. I wonder if the relative ease of this latest visit was in part due to me actually flossing occasionally. I also started using ACT mouthwash at night.

Ever since our visit, I’ve been flossing every night, then brushing with my electric toothbrush, and then using the ACT mouthwash. In the morning I just brush with a manual brush since all I’m really doing is freshening my breath. I want my dentist’s prediction – that I’ll keep all my teeth for life – to come true.

The topic of our dentist visit came up over dinner on Saturday (03/02) with our friends, K & E. We first went to a matinee showing of The Upside starring Kevin Hart and Bryan Cranston, which was good. It’s been probably a decade since we’ve been to The Marcus Theater in Addison even though we’d drive all the way there from Oak Lawn when we were first dating. Eh, I’m not all that impressed. Our friends prefer it, so we gave it a shot, but it’s pretty expensive. Our two tickets were $19 whereas at the mall by us it would have been $9, or $15 at the other theater we like with the reclining seats.

So dinner was at a restaurant we had eaten at once a decade or so ago and never went back. Well, now I know why. I ordered the ribs and fried chicken combo with a side of mac & cheese and garlic mashed potatoes. NONE of those things were very good. The chicken was dry, tough, and flavorless, plus not all that warm when it came out. None of my food was, although Joe didn’t have that problem (he also ordered fried chicken), so maybe mine was an older batch. The ribs could have been cooked longer, plus I didn’t care for the sauce they used. The mac and cheese was worse than Kraft taste-wise, and the mashed potatoes tasted possibly fake, plus were cold (my butter wouldn’t melt). I felt bad because our friends really like the place, and eagerly wanted to know what I thought. I had to be honest and say I wouldn’t come back, lest we end up eating there again. It felt especially awkward because they were paying (we had paid the previous time we went out), but I didn’t go into detail like I have here. K is pretty blunt herself, so hopefully she wasn’t offended by my polite distaste for my meal.

So anyway, about that dentist visit discussion….

E mentioned how he flosses daily and was giving Joe so much grief over not doing so. But I ended up giving E grief because he admitted he flosses in the morning. I’m like what good does that do after the food was sitting between your teeth rotting all night? How much you want to bet next time I see him he’ll have switched to flossing before bed? He’s conscientious like that. In fact, E and I tend to be alike whereas K and Joe are. Both E and I are always cold and have to pee frequently, whereas K and Joe can hold it all day and night and are always complaining about being warm. The similarities don’t end there either, and have become a joke how we need to switch SOs.

Other notable weekend activities:

Created a cute candlescape in the dining room with the candles I got on clearance last year.

Dropped off three boxes of donations at Savers.

Purchased dried sweet potato treats for Wookie at Home Goods, which she loves.

Decluttered my nail polish into one container instead of two. They just barely fit, and my plan is to try some shades that are questionable and throw them out if I don’t like them or if the consistency has gone bad. At some point I might just start getting my nails done professionally since my home jobs last 2-3 days at best before starting to chip.

Categories: Friends, Health, Movies Tags:

Hair Cut & Ultrasound

February 25th, 2019 Comments off

Saturday (02/23) I had my hair cut at one of those training academies. My optometrist’s daughter is going to school there so she cut my hair. I went a bit too short – I had about 5-6 inches taken off and now my hair is flipping out instead of under like I prefer. That always happens when it just hits my shoulders, so that’s going to be annoying for a few months until it grows another inch or so. It is nice not having to deal with all the tangling, though, because it was just too long and I kept putting off getting it cut because I’m never happy with the end result. No matter how I explain it, they can never quite get it how I want. Maybe I am unreasonable. But it’s even, and now that it’s shorter I can get away with not blow drying it every day and it looks ok. It even looked ok today without having to wash it, so that’s a bonus, especially because it got washed three times on Saturday. I washed it before my appointment not knowing they have to wash and condition it before the cut as part of their training. Then later that day I washed it again because my head always feels itchy after a cut. So now my poor scalp is a bit dry. I’m glad I didn’t have to wash it this morning as to give it a little break.

Sunday (02/24) we went to a matinee showing of Happy Death Day 2U which was… interesting. It was a bit hard to follow and had some plot holes (what movie doesn’t?), so I think I preferred the simplicity of the original, but the sequel wasn’t bad either. It’s definitely one that makes more sense if you see the original first, though.

This morning I had an ultrasound of my gallbladder, etc. and what a frickin shit show that turned into!

I arrived 15 minutes early per their directions and was told the tech was running late and wouldn’t be in until 9:30 am. So I opted to go home and come back since it’s less than 10 minutes from the house. When they called a bit later to tell me she will definitely be in at 9:30, I should have been more skeptical because the story was she locked her keys in her car and would be leaving her house at 9:15 am. Considering it wasn’t even 9 am when they called to relay this info, that meant she THOUGHT she’d be done at that time. Because if she already had her keys why wouldn’t she had already left her house? So I arrived at 9:35 am and could tell by the call I overheard that she still hadn’t left her house. What kind of rude ass bitch waits until AFTER the time she’s supposed to be at work, a place that has patients waiting for you according to a schedule, to call and give an update?

I was about to go off on them and cancel my appointment but somehow they were able to have a different tech do the procedure. Which was painful, by the way. And isn’t supposed to be according to the woman. So either it hurt because of my fibro, or I’ve got tumors all over me or something. She did say I was very gassy. Maybe that’s because even though I didn’t eat per their instructions, I wasn’t told what kind of food to eat at dinner which would have helped things (non-fat per my cousin who has had the procedure before). Also, I was told not to drink either and that was incorrect. Drinking water could have aided in my food digesting better and having less gas. So note to self – research the proper way to prepare for the procedure since these people don’t know how to communicate effectively. Ugh! Just glad that is over. I cleaned the upstairs between my two trips there so now I can spend the rest of the day relaxing if I so choose.

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New Glasses

November 5th, 2018 Comments off

Welp, after MONTHS of frustration I finally officially purchased a pair of eye glasses that not only fit me properly, but actually look pretty nice on me to boot. Who knew I could find a stylish pair after going through so many duds?

The brand is Nifties Eyewear and the technical details are as follows:
NI1321-6521 – 47/17/140 Titanium

It’s hard to tell from the photo, but the front frame is actually purple with tortoiseshell arms.

A short overview of my ordeal:

Apr 05 – Got an eye exam at Visionworks.

May 20 – Picked up my new eyeglasses from Visionworks.

Jun 03 – Returned glasses for a full refund to Visionworks because they weren’t fitting properly (and they don’t make any effort to help fit them either)

Jun 26 – Picked up new glasses from Wheaton Eye Clinic for $503. Struggled to adjust because frames were much heavier than my old pair.

Jul 26 – After a few failed attempts to adjust the glasses, found a different pair and paid an additional $100 for ultra thin lenses.

Jul 31 – Realized this second pair was front heavy and due to the way the nose pads were constructed, couldn’t adjust the nose pads in a comfortable spot without causing the metal that holds them from squeezing the sides of my noise. Also felt like the left eye lens was distorted.

Sep 06 – Had an eye exam at Wheaton Eye Clinic ($135 OOP) to ensure prescription was accurate. It was not. Visionworks had over-corrected my left eye.

Sep 27 – Met with my optician to try a few frames she had gotten from a rep that aren’t even sold at their store. Took them home to wear with my contacts to ensure proper fit before ordering lenses for them.

Oct 18 – Finally found a pair that works and ordered lenses for them.

Oct 25 – Picked up my new glasses.

Throughout all this my rep, who actually shares the same first and last name as my cousin, was great. She never charged me for having to redo the lenses and the paperwork I received claims my total for the new frames and lenses should have been $690 when all I paid was $603 so that was cool too. I think she felt bad because she had sold me on the heavy frames in the very beginning and then we just had so much trouble from there.

I’ve never in my life had such a hard time finding frames. The problem is the trend is oversized which are way to big and heavy for me. My new pair are actually larger than my old one and the tops of my ears hurt a bit from time to time but they are the closest I’m going to get to perfect right now. I can’t believe this saga went on for five months! I hope this pair lasts me at least a few years so I don’t have to go through this again for awhile.

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