Updates, Updates, Updates

Been awhile since I last posted.

Hearing Aids

Had a new hearing test. Showed that my hearing loss is fluctuating, and in a strange way they can’t explain. My hearing for high frequencies got slightly better, but my hearing for low frequencies got worse.

I was recommended hearing aids. At the time Henry Ford told me they looked up my insurance policy and it covered only $1,600 or $1,900 (i forget which) toward hearing aids, and hearing aids at Henry Ford range in price from $1,900-$5,900 (I am assuming that is per hearing aid, and so needs to be doubled as I need hearing aids for both ears). So I’ve been under the impression that I was somehow supposed to figure out a way to come up with $1,900-$9,900, which there is just no way I could afford the upper end of that. And I don’t know if the cheapest hearing aids would really be useful enough for me, it’s not the kind of thing I want to buy based entirely on “what’s cheapest”, but want to be able to consider “what is medically most beneficial”. This has had me stressed and down because I have real trouble hearing things in my day to day life and it’s frustrating to not be able to afford a solution to that.

Right before writing this up though I got some good news. I called my insurance company to verify the hearing aid info and they said that it is a % split, and they cover 80% of standard hearing aids and cover 1 per ear. I pay 20% of whatever the cost is. That changes my out of pocket price range to $760-$2,360, which I still don’t have but it’s a more realistic amount of money. That isn’t counting if I want to get an extended warranty which they don’t cover and they don’t cover repairs or replacements.

Gastro, PCP, Liver

Now for the longer and more frustrating gastro update. I think my last post was just after my ER visit. I pretty quickly after that was able to get in to see a gastroenterologist, who ran some test for general inflamation- negative, and certain infections- negative. He also ordered a procedure for further testing, but Henry Ford has this ridiculous new policy that I can’t just schedule the procedure when the doctor orders it, after the doctor orders it it has to go to a team of nurses to approve it (supposedly to determine if it would be safe for me to have the procedure done- I don’t understand why they think a gastroenterologist can’t be trusted to make that determination), and after approved then they call me to schedule. I haven’t gotten a call and have now called them several times inquiring about it- they say that it is still pending review and I just have to wait. Meanwhile I still get unbearable pain from eating, I’m losing sleep and missing work because of this.

After running out of CTO time again, from taking sick time for this, I decided that it is not acceptable to say I just need to keep waiting with nothing to address the pain now. Gastroenterology usually takes weeks to get into, is a $50 copay for me, and isn’t specialized toward pain management anyways, so I made a same day appointment with my PCP to see her this morning, which is only a $25 copay.

Unfortunately it did as much good as if I had thrown $25 in the trash. She said there is nothing she can do for the pain. She definitely wouldn’t prescribe any pain medication. She recommended I try tylenol… I’ve been getting severe pain, the type that when it’s the worst I can’t walk, that keeps me up at night, that for the abdominal pain I can only best describe it as a feeling like something is in my abdomen that is trying to claw it’s way out of me… but gosh darn it, I never thought to try taking some OTC tylenol for that!

I’ve taken tylenol. For awhile I was taking old cough syrup with codeine I had left over along with tylenol to try to get an equivalent of tylenol 3. I’ve taken ibuprofen and diclofenac. And I’ve even taken some tramadol that I got from someone else. Even the tramadol doesn’t touch the pain once it’s started. I haven’t taken any of these all the time to prevent pain- tylenol is bad in high doses, NSAIDs can cause ulcers if taken in high doses for a long time, cough syrup aint great in high doses for a long time either, plus I didn’t have that much of it, and definitely didn’t have the tramadol to use like that. So maybe some of these would be more effective if taken before the pain got bad, because pain meds often work that way, but I can’t say.

She also said it was a gastro issue and so I needed to see gastroenterology- which again, I can’t get in very fast to see. Plus I don’t know that I see the purpose of that, she wants me to gastro to treat the underlying cause. Gastro obviously believes they need the results of the procedure they ordered to determine the cause and treat it. So that’s just not an option until whenever the fuck Henry Ford decides to get around to it.

My PCP also, again, brings up me taking zofran for so long and how that’s not good which she always says in those tone like she thinks I’m drug seeking friggin zofran. It’s an anti-nausea med, there is no reason I would want to take it except because I am nauseous and throwing up (or more so, trying not to throw up- that’s what it’s supposed to prevent). Without it I throw up everyday, multiple times, and that sure as fuck isn’t healthy. I have many test results demonstrating the damage that the frequent, severe vomiting was doing to my health. And it’s not like her or any other doctor has another solution to the nausea and vomiting.

She also briefly brought up something from the CT scan that I missed in the report. Apparently it also noted a 9mm growth on my liver and recommended I follow up with my PCP about that. Which she mentioned then moved right passed and I forgot about it until after the appointment because I was distracted by my frustration at doctors just not giving a damn how much shit fucks up my life. But now looking back…. kind of feel like a growth on my liver is something that should be followed up on.

She also made a comment about how this has been going on so long. I had to remind her of the timeline I had already told her. This specific issue has been going on about 1.5 months. A long time, but not the >1 yr that I know is what she was referring to, when a lot of other health issues started or got worse. Which I never know how to phrase that. I’ve had chronic illnesses for a long time. Migraines since I was 10, Meniere’s since 2008ish, and fatigue & pain issues that went through numerous (mis)diagnoses over the years that started around 2009ish I think. But April/May 2017 something definitely changed. I had new symptoms and ones I’d had before, like fatigue, were even worse than before. Which I now know part of that is explained by the Intracranial Hypertension. Which I still suspect is itself a symptom of something else. So I’m annoyed at how she just bundles this up as if it’s been part of that from the get-go, and isn’t a new development.

I’m sick of doctors ignoring the toll this takes on my life. It would be one thing if I could just lie in bed at home when the pain is bad, I could cope easier with that. But I can’t. I have a job and staying employed is important to me. And doctors certainly haven’t ever suggested they think my conditions mean I shouldn’t be working due to disability, to the contrary they often downplay the impact they have. But then they ignore when I tell them how these things hurt my ability to maintain employment. It’s frustrating beyond words, my life just doesn’t matter to them. Life beyond that my heart is still beating. I mean actually living.

And I’m also sick of being cut into pieces and treated as small, separate, distinct parts. Oh, this issue is for neurology, this issue is for gastroenterology, this issue for otolaryngology, this one for ophthalmology, et cetera, et cetera, et cetera. Seems beyond belief to me that all these problems I have are just a whole lot of bad luck unrelated to each other. It seems something, yet unidentified, systemic is going on and leading to a lot of other problems. But of course it is unidentified because everyone only looks at their tiny part and if something relates to another part they send you off to someone to focus solely on that part.

I’m frustrated. I’m tired. I’m sick and tired of being sick and tired.

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Updates, TMI

I haven’t posted here in awhile.

Things have not been great lately.

My step dad was in the ICU for a long time and passed away last Thursday.

The weekend before that one of my cats found some thread and ate it, which I discovered when he had thread coming out of his butt. Had to take him to the emergency vet where he needed surgery (I’m still trying to come up with the cost of it all to pay back: gofundme.com/emergency-vet-surgery-for-loki ).

Then this past week I started having really bad back and abdominal pain. Which I learned hastened mainly whenever I ate something. I expected it would be something that would get better with time, but it just kept getting worse. Ended up going to the ER yesterday where they did a CT scan. Appendix looked normal but it showed inflammation or an infection throughout my digestive tract. PA at ER said it was pancolitis and prescribed 2 antibiotics and also and anti-spasmatic that was supposed to make it so I could easy without ending up in severe pain.

Medications prescribed by ER

Seemed like it worked last night. I ate after the ER (because even though eating causes pain, I’ve also been incredibly hungry so its hard to balance those 2 things) and the pain didn’t get really bad again last night, though the last 2 days I’ve had persistent pain even when I don’t eat, it’s just not as severe as when I eat. Ate dinner today and ended up in really god awful pain again, and nauseous, and then threw up everything I ate anyways.

I was able to go online and see the CT report tonight, which in addition to the inflammation/infection also noted ovarian cysts, a spinal disc extrusion, and a different sounds disk protrusion.

And I’m just feeling very frustrated right now- how can I end up with so many different things wrong with me? Surely this can’t all be random bad luck. It seems like there must be some connection between a lot, if not all, of it. But what that would be is still a mystery.

Hearing Test and ENT

Had my hearing test and ENT appointment today. Was tempted to cancel because I was feeling sick, but I knew I need to find out something about my hearing so I sucked it up and went.

Hearing tests make me paranoid. I always feel like they are just fucking with me. Even though I know I have hearing loss, they say “say yes if you hear a beeping” and I’m just sitting there hearing nothing and I start to wonder if there is any beeping at all or if they just want to see if I will say I hear non existent beeping just because I’ve been told I’m supposed to be hearing it.

My hearing has gotten worse. Shocker.

What’s weird though is the hearing loss is not consistent with my diagnosed Meniere’s- Meniere’s usually involves hearing loss at the low frequency end, whereas apparently my hearing loss is most pronounced at the higher frequencies.

ENT has no idea what is causing this hearing loss. Audiologist and ENT kept saying how unusual this was for someone who is only 31. Yeah, welcome to my life! How do I get doctors to stop being surprised that my body, while only 31, clearly believes it is closer to 81? I’ve been being told “this is really unusual for someone your age” for so long.

I suspect the hearing loss is related to IH, but I don’t want to just get tossed back to neurology with no help, especially because if I see the same neurologist as last time it’s clear she doesn’t think any of my issues are caused by the IH (insert eyeroll here), so I didn’t share that (though the doctor was fully aware I have IH).

Since my hearing does seem to fluctuate though, the audiologist wants me to return in a month to see if the results are drastically different and then if it still shows hearing loss like this, talk about a hearing aid.

While I was there the ENT also did a little balance testing having me walk across the room and such. I actually managed walking across the room pretty well this time!

…. how sad is it that that feels like such an achievement in my life. But less than a year ago doing the same thing I could barely manage walking across the room.

On Wearing Lots of Hates

Becoming so ill forces you to learn a lot about yourself, and really challenges how you have always viewed yourself and defined yourself as.

I think I have posted here before about a therapy appointment I had where my therapist suggested that what I was dealing with was similar to athletes who suffer an injury and feel lost because they always identified themselves around their sport.

I can see some similarities to that but thought in a way it was the exact opposite- there was no one thing I defined myself around. But I found myself unable to do so many things at the same times, I didn’t feel like myself anymore.

I’ve realized though one thing about me, is I always have multiple things going on. I can’t think of a time in my life that wasn’t true. Even if you look back to childhood I had school, and whatever physical activity I was involved in (when I was really young I did little league and soccer, I took tennis lessons one year, and I danced- mostly jazz, some ballet- for 1 year), plus school, plus my art, then in high school I had clubs too (Junior Classical League ftw!), and political activism.

By college is probably around when I started feeling more defined by my activities, I always had lots going on. Freshman year I was a full time student, I was a volunteer advocate working with survivors of domestic violence, I was involved in student groups most noteably MRULE which also go me involved in other volunteer work and political activism. By my 4th year of college I was a full time student, volunteer advocate working with survivors of domestic and sexual violence, employed at a domestic violence shelter, and also working a second job on campus, and doing an unpaid internship, and involved in multiple student groups, most involved in MRULE and Women’s Council. Of my whole life that reminds the year I was doing the most.

And in April 2017 I was a full time social worker, a full time PhD candidate, an artist working on my own art business, politically active going to protests and rallies, and I was lifting, swimming, and doing Krav Maga.

Then in May 2017 I was too sick to walk more than a few feet, I couldn’t go to protests or rallies, I couldn’t life, I couldn’t swim, I couldn’t do Krav Maga, I was too exhausted to keep up on my PhD, I was missing a lot of work due to being sick. And after many months of that, I didn’t feel like myself anymore.

And I tried to get used to this new normal where I couldn’t balance a bunch of different interests and goals.

But my nature does seem to one oriented toward having a lot on my plate at all times because over time I’ve just added more things in. Now I work full time, and I’m working on my art, and I’ve decided to write a book about living with chronic illnesses, and I’m back to swimming, and soon I’m going to have to work my PhD back in too.

I just don’t know how not to have lots going on at the same time. And being so sick has really emphasized this.

Moving, Mold, and Updates

I haven’t updated here in awhile because I’ve been busy moving. Right after my last post here I got notice from my landlord that I had 30 days to move. Very sudden and unexpected. I was living at that house for over 4 years. And while I had been signing yearly leases, with everything going on I forgot to contact her about another year long lease when the previous expired. After the first year long lease each renewal was brought up by me asking for it, specifically because I wanted the protection of a lease term that wouldn’t mean my landlord could just kick me out with only 30 days notice. But I was focused on other stuff and ended up in a default month to month by law. Though I didn’t even expect that would go badly, I thought after 4+ years of living there and always paying rent on time and being a pretty good and low maintenance tenant, I wouldn’t have to worry about being asked to move with such little notice.

I was wrong.

That was stressful but I found a new place that is only $100/month more than what I was paying, and it only took about a week or so of searching. I had the new lease signed by the beginning of April. And in many ways the new house is a better fit for me with this illness. I loved the basement at the old house and the home gym I had set up there, but I’ve been too sick to use the home gym and even just going up and down stairs is very hard for me. So in the move I had to sell all my old home gym equipment. Got about $600 total for all of it, far less than it all cost me of course. My new place doesn’t have a basement, instead there is a laundry/utility room, which is also where the cat litter is now. This makes scooping litter, changing litter, and doing laundry much easier for me to do and keep up with now. The new house has a partially finished attic though, so I set that up as a home art studio to work on my art. The nice part of that being that unlike the basement which I needed to go to for necessary chores, painting right now isn’t a necessity so I only need to go upstairs when I’m feeling well enough to. The whole house is smaller but I think that also works pretty well with me being sick.

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Selfie taken after making myself really sick the second to last day i spent moving. I spent a good while on the floor of the bathroom at my old place before I was able to get up and drive back to my new place.

Moving was hard, but I had a lot of help. And I don’t know what I would have done without all that help. I actually was able to do more than I expected in the moving, though the last week I did the last little bit of moving stuff by myself and really made myself sick pushing myself to do it. All the big moving, like furniture and heavy boxes, was done by paid movers. Even just packing through, I had a lot of help. Easter Weekend my brother and sister both come in from out of town and instead of really celebrating the holiday, they helped me pack and start moving some stuff over. My mom came over almost everyday to help me pack and move, in addition to having helped me with finding a place. My brother came in for another… I want to say 2 weekends to help with moving (he is about 1.5 hrs away, my sister is several hours away on the other side of the state, so it’s harder for her to come into town.) My aunt came over and helped as well with moving and cleaning up the old house. By the last week when I had to do the rest myself, there was only a small bit left to do, and how sick that little bit made me really demonstrated how awful things would have been if I hadn’t had so much help.

 

But now I’m moved over. Still unpacking…. that is going to take me a long time as I do it slowly at my own pace. But unpacking does not have the stress and time constraints of packing.

I’ve actually been doing surprisingly well since moving as well. I still feel sick all the time, but I haven’t been as bad, I have had more energy, have been more productive. I don’t know for sure what it is. It’s hard to judge on a short term basis because the illness does have flare ups and then times when it’s not as severe. So am I just lucky and experiencing a period when the illness is less pronounced, or is it more than that?

Today I had a therapy appointment and mentioning this to my therapist she brought up how at my last appointment she suggested that perhaps my illness was related to something toxic and harmful in that house (possibly mold), and she suggested that maybe moving would be good for me then.

If you’ve been following this blog you may remember that this is not a new theory. I got so sick during the summer, when I had an AC in my room running all the time, which I later discovered to have black mold growing in it. So for that whole summer I had breathing in black mold spores and possibly mycotoxins from that. I still can’t stop wondering if this all is, at least partially, related to that mold exposure. And it’s possible it was other places I couldn’t see/didn’t find besides just the AC unit.

So, that would certainly be really great if my health issues started subsiding a little and I went back to being chronically ill but not as severely ill, again. But too soon to really say and I don’t want to get my hopes or expectations up at the thought.

Now that I am moved however, I have to start getting back to the full time job of managing my health.

Next week I have a hearing test and ENT appointment, because my hearing is so bad. Another thing my family helped with during the move- my mom was with me all the times I met with the new landlords, and she kept having to tell me what the said after when I would just do my smile and nod thing because I couldn’t hear most of what they said. More and more I find myself just completely unable to hear people. I had a mandatory office meeting with the CEO at work and I could tell she was announcing something major, and I’d pick up a word here and there… something about jobs…. something about a time limit… something about changes being made…. thankfully it ended with a handout of a letter announcing her resignation which put the pieces together for me that she was talking about resigning and wrapping up certain things in process before someone else takes over.  Also really emphasizes though that I need to address my hearing. Like most things, my doctors downplay the hearing loss though-those ridiculous moments with doctors when test results clearly show one thing, but they keep insisting it’s not really happening. I was diagnosed with meniere’s in 2010 or 2011 and that was my first (adult) hearing test. At that time they noted that I had slight, but only slight, hearing loss (from what would have been expected/normal). Since that first test, each subsequent test (typically at least 1 hearing test a year) has shown further decreases in my hearing. Despite the tests showing a consistent downward trend in my hearing, ENTs have always brushed off the hearing loss as being very small. And comparatively to others I’m sure it is, but it’s getting bad enough to seriously impact my daily life.

After that  in early May I will see a different gastroenterologist. Which should be fun. “Hey, so I already saw a gastroenterologist and had an endoscopy. The endoscopy didn’t show anything that would explain the nausea and vomitting so they said it wasn’t a gastro issue. My PCP referred me eventually to neurology though, who found I do have a (another) neurological disorder, but they say that doesn’t fully explain my symptoms so the neurologists are insisting that clearly the previous gastroenterologist was not thorough enough and say you need to do a better job figuring out what is wrong with me because they don’t know but for some reason are convinced it must be something gastro related despite all the symtpoms I have that point to something not gastro specific.”

And I think I have a ophthalmology follow up coming up.

On the to do list still is making appointments for rheumatology, maybe endocronology, then trying a new neurologist, and maybe trying out a new PCP too.

Seriously a full time frigging job being sick.

Neurology Update, I’m not Sick, Just Crazy

I have been waiting months for this Neurology appointment… and for what?

This neurologist concluded basically that I’m not sick, I’m just depressed.

She denies that ANY of my symptoms are related to the intracranial hypertension and declares it completely under control because I don’t have pressure headaches and my eyes are mostly fine (just slightly elevated pressure there too). Except I didn’t have pressure headaches before the lumbar puncture and didn’t have any significant eye problems at that time either – but my pressure was elevated. That’s an objective, empirical measurement. Normal intracranial pressure is up to 20 cmH2O. My opening pressure was 29 cmH2O.

She tells me it’s not even a very elevated pressure. But it is elevated! It’s above normal! It is unequivocally in the intracranial hypertension range.

She denies that my memory loss, brain fog, confusion, et cetera could be at all related to fluid inside my skull squeezing my brain.

What she thinks is far more likely is that depression is causing me significant memory loss and trouble thinking. These are not symptoms of depression though. Even if depression can have some effect on memory and concentration, but it is not a normal, standard symptom of depression to forget your name, date of birth, address, common words regime you try to speak out right, et cetera. It might impact concentration but it doesn’t have the effect of severe brain fog, confusion, and dizziness. Depression definitely doesn’t cause yuppie legs to give out. It doesn’t cause vomiting and weakness from physical activity. I work in mental health, these are not signs of depression, they are signs of physical illness. And obviously I can’t treat myself but my therapist and psychiatrist both agree that it is ridiculous to claim my symptoms stem from mental health. My mental health evaluations do not in any way indicate this to be the case. Though my depression treatment does indicate that the primary source of my depression is my physical health problems and dealing with doctors.

She suggests I need a good PCP who can put together all the pieces from all the specialists I’ve seen. Which I find an ironic comment as she tries to pass me back to gastroenterology who’ve already claimed “not us” too. No one is working together here. Everyone is just passing me of to someone else to deal with so they don’t have to be bothered.

I ended up crying during the appointment which I hate. But it’s so hard dealing with being this sick everyday and having doctors tell me I’m perfectly healthy, maybe it’s just depression. (Which btw we know many disorders common in women were written off by doctors as psychosomatic for years, decades, before someone realized, “oh hey, this is actually a thing! Who knew… other than all the women who’d been telling us for decades that they are sick and this is real. But those crazy ladies, can’t trust what they say.”

It gets in my head though and doctors make me feel crazy. Maybe this is just in my head. Maybe I’m not really sick. Maybe it’s unrealistic for me to hope and expect to not feel awful all the time, maybe what I need to do is just push through it harder. Maybe everyone actually feels this way and this is totally normal and I’m crazy for seeing something wrong with it.

Then I do some reality testing. Is it normal to feel this way? I know for a fact that until relatively recently I didn’t feel this way all the time, so obviously this isn’t just standard. Do other people collapse and vomit when trying to do anything slightly physical? No, they don’t. When I put these thoughts to the test, logically they don’t hold up.

That doesn’t mean doctors don’t still make me feel crazy and hopeless.

Having doctors deny anything is wrong is, psychologically, so much worse than if they say “something is obviously wrong, but we don’t know what it is”. The latter says, ok, well, let’s work on how to manage living with this then. The first says there is nothing that needs to be managed.

Odd Symptoms vs Generic

I was never a big fan of the show House, and when fans said how they’d want Dr. House as their doctor I thought that was ridiculous. I never would have wanted him as a doctor, on the show he was ok basically torturing patients if it provided an answer for him.

Now I understand needing to know what’s wrong enough so badly, that I’d choose him if he were a real life option not a fictional character.

But instead I often mentally think of my symptoms as of they were on his white board.

I was thinking about some of the things about my illness that are oddest to me. Most… specific, and peculiar. I don’t know why doctors don’t focus there. They focus on weeding what a describe down to the symptoms that they are most used to- nausea/vomiting, fatigue, falling, dizziness. Each symptom is worked down to its most genetic aspect. And then doctors focus on the symptoms from that which stand out as most typical – “oh, nausea/vomiting. Ok this is a nausea/vomiting issues”, this is what they say and then where they seem to work from in diagnosing.

But aren’t the parts that are strange going to be the most telling? One thing I’ve tried to emphasize so much since this started that I feel like is never really given consideration is how every bit of my symptoms is made worse by standing, worse than standing by walking, worse than walking is anything that increases the intensity of walking- walking while carrying groceries, et cetera.

Physical activity/exersion is a trigger for it all but not all physical activity is the same. I can push myself in my wheelchair longer than I can walk before symptoms come on. I can swim with very little symptoms.

One thing I notice though, is all physical movement is still not equal. The more I involve my legs in swimming the sicker I get. Using just my arms, I’m fine. I font know if its really something specific to my legs or just that by using them I’m involving more and larger muscles in my movement.

Yet this factor which to me like it should help differentiate what I’m experiencing from everything else which can also cause nausea and fatigue. Just looking for what explains something like “nausea and fatigue” seems impossible without specifics and more details. Is there any medical diagnosis that doesn’t include nausea and fatigue in it’s possible symptoms?

PCP Update

I’ve been meaning to post about the appointment I had with my PCP end of February for awhile now, but between a bad cold and my work computer breaking (my personal computer has been broken awhile) I haven’t gotten around to it.

I’m having to write this on my tablet actually, which is slow and tedious.

So after my last neurology appointment it sounded like it was back to square one investigating non-neurological possible conditions (co-occurring, or causing the IH).

Neurology specifically suggested gastroenterology but if we went back to were I was pre-spinal tap with my PCP on exploring options, rheumatology and endocrinology were the most recent referrals.

Rheumatology blew me off based solely on the reasoning that my IH should explain all. Well, Neurology disagrees, so to me that means Rhematology should be reconsidered.

Endocrinology I never followed up with thinking that it was unnecessary after the spinal tap results.

Well, now my PCP doesn’t see any reason for me to see any specialist other than gastroenterology.

And she is uncomfortable with me being on zofran so long without really knowing why, hinting that she is not going to keep giving me refills. With Zofran being one of the biggest things keeping me the tiny bit functional I am.

Overall, this appointment was really demoralizing.

I feel like I hit some time limit for doctors, like there is an indivisible, never explicitly given, time limit doctors give for either figuring out why you are sick or deciding that if it can’t be explained yet, you must not be.

Also when I mentioned (at her prompting) spinal tap results including the red blood cell, white blood cell, and lymphocytes in my csf, she says that is probably normal because if I had encephalopathy I’d be “really sick”.

….

….

I AM REALLY SICK! That’s why I’m here. That’s why this is why I keep coming back about this. This is why I try to keep emphasizing how much this is impacting my ability to life every fucking day. Because I am REALLY SICK.

This appointment along with others recently have me wondering if doctors understand how much they impact people’s lives- not just directly with diagnoses, medications, or surgeries, but with what they say, how they approach sick patients. Doctors have me feeling incredibly hopeless. Completely. Like I have no life and no hope of a life and it’s only to get worse and worse and doctors are just going to make it harder for me, not easier. Mental health is just as much part of health and the impact doctors have on this by how they deal with such illnesses/sick patients is important, IMO.

The thought of going back to gastroenterology stresses me out. I already saw gastroenterology who determined it’s not gastroenterological. So now I have to go back to gastroenterology to tell them neurology thinks they haven’t fully considered all the gastroenterology options. I expect this to result with gastroenterology saying I need to go back to neurology. Leaving me bounced back and forth between two specialists claiming, “not me!”

I work in integrated healthcare and Henry Ford is supposed to be an integrated healthcare system, but I feel like a lot of folks say “integrated” without really practicing it because it would require actual changes in how medicine is practiced. I need an integrated healthcare approach. Not physical-mental health integration or mental health and substance abuse or physical health, mental health, and substance abuse integration, as it is used most often to mean in my work, but first off I need my physical health care to be integrated with itself.

By which I mean, I need doctors to work as a multi-disciplinary team, not separate entities who can just pass the responsibility to someone else whether that person will do anything  or not, because figuring me out is hard.

I need a gastroenterologist to consult with a neurologist about this, not just bounce me back and forth between them.

But that’s not healthcare is practiced, IME.

You Won’t See Me At My Worst

I have so many thoughts and feelings I want to capture in a post right now but they don’t all belong jammed into one blog post, so let’s see how well my sort of out of it mind can do at staying on track tonight.

I mentioned talking with coworkers about my illness. Well, they have followed up a bit on that conversation. One follow up was what do I want them to do if they see me fall at work. I said, if I’m conscious, let me rest and I can get back up in a few minutes. If I’m unconscious- that is not normal, please call me an ambulance.

I also reassured them though that this probably won’t come up at the office. I don’t go to work at all on my worst days. On my so-so days, I’m not even sure how much coworkers would notice. If I’m feeling weak and put off faxing something for a few hours, or I use my cell phone and an app to fax it from my desk so I don’t have to walk across the building to the fax machine- would anyone notice this as a sign of me being sick? Do people notice that I tend to touch the wall when I walk to keep myself from staggering and falling? Would you notice the extra bathroom breaks if I’m throwing up a lot that day? When we talk and there is a pause in my speech, do you realize this is a sign of me being unwell and having trouble  remembering the word I need? Would you notice when I stare intently at a spreadsheet in excel for hours and hardly do anything to it because I keep forgetting what it is, why I’m looking at it, and what I’m supposed to do with it?

There are signs at work of my illness. But they aren’t big flashy “THIS PERSON IS SICK!” signs. They are the kind of things I suspect most people are too wrapped up in their own lives to notice, or if they do then they just write it off as a quirk of mine.

There is something extra hard about an illness being invisible in this way though. And of course  benefits to it as well. But the difficulty is getting people to realize it’s real and hard. Even for family, who I don’t believe ever doubted me or didn’t believe my severity, I think the first time actually witnessing me fall changed things a bit.

But no one has ever seen me at my worst. Even my mom who has been a great support and been around to help has not seen me at me worst. She didn’t see me lying in my yard crying because I fell mowing the lawn and couldn’t get up, and retching uncontrollably even though I had nothing to throw up. She didn’t see this repeat in the snow in the winter when I shoveled my driveway.

And the worst though is that doctors never see it either. Because I can’t just choose when to be the sickest and make myself be sick for an appointment but then ok before and after. And appointments are low intensity- they don’t trigger the severity of my symptoms. Sitting in a chair at a doctor’s office, I’m not going to fall because I can sit all day without falling. I only fall when walking. So doctors hear me describe being  ill, but they see me looking like a totally fine 30 yr old woman who should probably lose weight though. And so I don’t get treated as very ill by doctors, who I need to be treating me as if I’m very ill, because I actually am very ill!

“Everything was Normal”, Except it Wasn’t

I’m temporarily filling in in a different department at work, one I’ve filled in at before so I know a lot of the folks who work in that department. This department doesn’t have enough office space for staff so there are a number of staff people, myself included again, who have to work out of the main conference room, which is also where people take their lunch.

So during lunch I was talking with some coworkers and someone asked how my PhD is going, I explained I’m on a medical leave of absence and gave a brief overview of my health issues. One of my coworkers has a daughter a few years younger than me who also has some serious health issues. One thing she recently dealt with was a brain infection and so after talking over lunch I looked up the infection and then was checking if it was something I had ever been tested for (the answer to that is no.)

In the process though I was looking back through all my spinal tap CSF lab work- that was done in early September and I was told was all normal.

Except I just realized it wasn’t all normal. I had elevated red blood cells, white blood cells, and lymphocytes in my cerebralspinal fluid.

I’ve had this happen a number of times before where doctors say “everything is normal” when it’s not. Apparently what they really mean by “everything is normal” is “nothing that is abnormal is conclusive of any particularly diagnosis so we are just going to pretend it’s normal” or sometimes I think “it was abnormal but not as abnormal as we expected to see”- as I can only assume was the case with the ophthalmologist who said my eye pressure was “fine”, yet when I looked it up later, was actually high (ocular hypertension). I can only assume she meant that they frequently see much higher pressures among folks with IH and therefore don’t consider mine high enough to be troubling, given my known IH. But that is different than “normal”.

Looking up info on elevated red blood cells, white blood cells, and lymphocytes, most of it seems to be pretty vague- could indicate bleeding, could indicate inflammation, could indicate infection, could indicate a variety of disorders. Basically like all my abnormal test results throughout this- it’s not that they aren’t finding things wrong with me, but nothing points to any conclusive cause for the abnormal results.

One thing I found looking it up though was Susac’s Syndrome. Which is interesting to me and I want to ask my doctors about it because Susac’s impacts inner ear, retina, and brain. And may not have signs of all at the same time. I have diagnosed inner ear disorder and clearly something neurological going on. In fact, from what I read, when it presents primarily as inner ear Susac’s is frequently misdiagnosed as Meniere’s… which I’ve been diagnosed with. May be totally unrelated, but interesting looking up my abnormal results and one thing I find is a rare disease that impacts the same variety of systems I know I have something wrong with.