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New Computer & iPhone

November 24th, 2019 No comments

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 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.

Categories: Health Tags:

Sick

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.

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.

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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?

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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.

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