Writing a Book

I’ve said that I plan to write a book just about my experiences with this medical mystery illness, this blog is part of that process. But that’s not what this post is about.

I have another plan I am thinking more and more about for writing a book. I want to write something aimed at health professionals that seeks to bridge the gap between knowledge those with chronic illnesses have and share and that which professionals in the field have. I have one foot on each side as someone living with severe, chronic illnesses, and also as a social worker working in mental healthcare/integrated healthcare.

From my experience with both I find myself often frustrated with other health professionals who may be well educated on diagnostic criteria, treatments, services available, but do not understand how it feels to live with one of these chronic illnesses.

While there are limitations and downsides trying to work when dealing with severe chronic illnesses, I have found in my work that my experience living with chronic illnesses provides me advantages in my work. I understand how it feels in a way others don’t and sometimes the problem solving I’ve had to do for myself means I know about more options than others who are often trained in one size fits all solutions for chronically ill individuals.


Of course the more I think about doing this the more I realize what a massive undertaking it will be, to be truly comprehensive and to merge empirical research, theory, and also personal experience.

Also one idea I’m playing with is to see about trying to find folks with other chronic illnesses or disabilities write short essays about their experiences with different aspects of it, in order to provide a more diverse aspect of personal experience in it, rather than relying only on my own which is obviously much more limited.


The Many Names of High CerebralSpinal Fluid Pressure

There are so many terms used for having high cerebralspinal fluid pressure, and none of them seem to be good ones for it.

Pseudotumor Cerebri, while still used by many, is considered outdated and is not preferred because of the connotation of it being a “fake tumor” and thus fake disease.

Instead the replacement term is meant to be Intracranial Hypertension. Personally I’m not a fan of this term- the “hypertension” part makes many associate it with high blood pressure, even though it’s completely different. I don’t have high blood pressure, and I am certainly not this sick because of high blood pressure. That people think it means some form of high blood pressure makes it seem less serious, because hypertension does not typically cause such severe symptoms.

Intracranial Hypertension has a variety of different descriptor terms applied to it.

Idiopathic Intracranial Hypertension is common. I hate “idiopathic” diagnoses because of how lay people and doctors alike view idiopathic conditions as if it is a disease. It’d be like if we didn’t know the many causes of rashes and so just labeled rashes in most scenarios “idiopathic rash syndrome”. You’re describing a symptom you can’t determine a cause for- it’s highly likely that it is not one unknown disease causing that symptom, but multiple diseases that medical science hasn’t identified yet.

And don’t even get me started on calling it idiopathic then saying its caused by X. If it’s known to be caused by X, by definition it’s not idiopathic. In the case of IIH this mostly takes the form of a bunch of doctors claiming X causes it and Y will cure it despite a lack of research to actually back that up. Because apparently their egos can’t deal with actually admitting “we just don’t fucking know”.

See also doctors who diagnose this as idiopathic without doing all the tests necessary to rule out an identifiable cause. Idiopathic is meant to be a diagnosis of last resort when all other possibilities are ruled out. You’re doing it wrong if you immediately label it idiopathic without ruling out known causes.

I typically just say intracranial hypertension, or IH without the idiopathic because I feel like “no one has any fucking clue why” is just not a useful descriptor.

Another used less often is Benign Intracranial Hypertension. I hate this too, in this case because it’s simply not accurate. High CSF pressure is not benign. It is dangerous, and deadly.

I actually do like the modifiers of “Primary” vs “Secondary” Intracranial Hypertension. Though I still hesitate to call mine Primary Intracranial Hypertension, because it doesn’t seem like it’s really clear enough to know for certain that there isn’t some other diagnosable illnesses that is behind the IH. Especially for me right now given my lack of real follow up with a doctor since my lumbar puncture.

The neurologist I was seeing still has no appointment openings. Earliest I could MAYBE get in would be February. Likely later that that though.

Sick of this waiting I’m going to see a different doctor through a different health system, in December. Specifically I am going to see a doctor with the Michigan Institute for Neurological Disorders (MIND). I’m hoping they will be good at specializing in rare neurological disorders. Plus I still want a second opinion on my MRI and MR Venogram results, just to be safe.

Sharing What, With Who, When

It can be difficult to balance what to tell different people at different times regarding being chronically ill.

For myself, I don’t mind talking about my illness with people, I’d rather people understand what is going on with me. The biggest struggle for me though is that I won’t assume every person I interact with wants a long, detailed account of my health.

Work is where this comes out the most for me. Legally I am not required to disclose any of my health information to my boss. Only HR needs that info for when I request FMLA. However, I find it easier to be open about what is going on with me with my boss. Especially since I’m young and don’t “look sick”, I’d rather talk about what is going on than have someone start assume I am taking advantage of things, or being out of work for stupid reasons. Still though, he doesn’t know all about my illness and what is going on with me health wise. Knowing ALL of that would require lengthy explanations, and I don’t feel like assuming my boss wants to know all my health info. He knows the general gist of it only.

Others know only that I have a serious illness that means I take a lot of time off work for medical reasons.

And of course other people at my work know only that I’m out “sick” a lot. Those folks sometimes make comments implying they are worried about catching whatever I was sick with, as if every time I’m out sick it’s because of some virus. Which just boggles my mind- how does it seem likely that I just happen to keep catching colds, flus, or whatever? If I’m frequently out “sick”, wouldn’t it be a reasonable assumption that I probably have some sort of chronic, ongoing illness?

But what is the solution to any of this? Am I meant to just out of no where go into a long explanation of all my health issues to every coworker? My lack of discussing it isn’t a factor of me wanting to keep the info private, it just seems awkward to randomly go off into an unasked for description of my health issues.

While others might feel differently about what they are willing to share, I imagine for many individuals with chronic illnesses or invisible disabilities this is an issue- what do you tell different people at what times.

Accessibility Fails

Photo of generic gym shower stalls I found on google. Not the showers at my gym.

I mentioned in a previous post about how standing and walking are still more difficult for me than other physical activities. Swimming is easier for me. I have a harder time standing long enough to take a shower after getting out of the pool than I do with swimming laps (though I’m still limited there too). The gym I go to does have 1 “accessible” shower stall available which I have started using, as it has a bench so I can sit if I feel sick. Since actually using it though I realized that aside from the bench and having a handheld showerhead, there is nothing different about the “accessible” stall and the others. Hooks for towels or swimsuits are at the same height as in the others- so I have to stand in order to use them. The shower stall isn’t any bigger and there is no space outside it where one could leave a wheelchair without blocking access to all the showers, if someone needed to transfer directly from a wheelchair to the shower stall bench. For someone who uses a wheelchair all the time and cannot walk a few feet or stand (at a standard height), it really isn’t accessible because of these oversights.

Going through life able bodied or even just close to it, there are a lot of things you can and almost definitely do miss in the world around you that impede accessibility, and many “accessible” places that are in actuality still not accessible for many disabled people. A lot of this applies most to those who use mobility aids, especially wheelchairs. I never realized how often businesses are not truly accessible until having people close to me who used wheelchairs and seeing all the times the “accessible” businesses were not.

I try to be more aware of it now, but even so, it is very easy to overlook if it isn’t something that will impact you yourself. I never gave the “accessible” shower a second glance or thought as to if it was truly accessible until I was in the position of using it and put face to face with “um… this really wouldn’t work for many people with disabilities!”

Actually I tend to internally roll my eyes when able bodied folks say something is “accessible” these days. In large part too because there is no one size fits all form of accessibility because not all disabilities are the same. Is your building barrier free? once inside can a person in a wheelchair actually get around or are things spaced too closely to accommodate one? Is your accessible bathroom stall accessible for those who need to transfer from the side of the toilet or only for someone in a push wheelchair with someone assisting them? Or can it accommodate both? (What friends of mine who use wheelchairs and need to transfer themselves from the wheelchair to another seat need is very different than what we needed with my grandmother who was in a push wheelchair, needed. For them a wider stall with bars is needed, not a narrow but longer stall. On the other hand my grandmother needed a longer stall where her wheelchair could be placed directly in front of the toilet and with enough room in the stall for someone to assist her. To be truly accessible you need to meet both of these completely different needs, not just one of them.) What about someone who is blind, in what ways is your building accessible for them (for example, not helpful if you put a sign with braille on it behind a piece of flat glass…) What about someone who is deaf? Do your alarms in the building have flashing lights for them in addition to audible alarms? And so, so, so much more that I’m missing because I don’t experience all disabilities and I’m definitely not an expert on them all.

293.83 Depressive Disorder Due to Another Medical Condition

I’ve struggled with depression long before my intracranial hypertension. Though immediately prior to last November I was doing well and did not have symptoms that would meet the criteria for depression (per DSM 5). Nov 2016 changed that when Donald Trump won the election. Then with the intracranial hypertension my depression got worse still and it was then that I started seeing a psychiatry PA for medication.

So in my opinion I have both depression in it’s own right/in response to social stressors, and depression due to the physiology of another medical condition (intracranial hypertension). My depression didn’t start with my IH but it was significantly worsened by it, and while some of that is the stress caused by it and everything related to it, based on how I’ve felt during this time, and what has or hasn’t helped relieve the depression, I think that the IH has had a very direct effect as it directly causes changes to my brain’s physiology.

This week I had a follow up with the psychiatry PA I see for meds. My depression has been significantly better since diagnosis and treatment for IH. I’ve also had anxiety issues for a long time, but for many years my anxiety has been pretty well controlled by nadolol as a happy side-effect (I take it for migraine prevention). Though the PA noted that my anxiety at this appointment based on  the GAD-7 (every appointment I fill out a form with the PHQ-9 and GAD 7) was much reduced from my last appointment.

Well the last time I saw him I was still undiagnosed, I was having noticeable and scary memory loss (I forgot very basic things like when I was born, or what city I live in). My memory loss also meant I was forgetting appointments frequently, so in addition to all the stress I was dealing with in life I had the added stress that I was about to be terminated as a behavior health patient there (no longer able to see my therapist or the PA), and that meant after having found a medication that was helping with my depression, I was going to forced to discontinue that as well. So, uh, no shit my anxiety is better now than it was then! It’s also still higher than what would be my own baseline level because I’m constantly stressed out about work and the risk of losing my job due to this illness, and finances as this illness makes it harder and harder to make ends meet. So I wouldn’t call this progress. At least 85% of my anxiety at the last appointment was actually being caused by my mental health provider. No points awarded that you are no longer the cause of increased anxiety for me!

Back to depression though, I was actually surprised when he suggested adjusting my medications. I was previously taking venlafaxine for migraine prevention which I guess is discontinued now because I sent an email to my neurologist saying I was out of refills and asking if she was going to write another prescription for me for it or discontinue it (it was slightly beneficial at migraine prevention, and not at all useful for my depression). She didn’t send my pharmacy a new prescription so I guess that means she decided it should be discontinued. And yeah- this is all over email, because I still haven’t been able to get a single appointment with my neurologist since the lumbar puncture in early Sept showing high CSF pressure, and I won’t be able to get one for at least another several months.

But through the PA I’ve been prescribed and taking bupropion which has been helping with my depression a lot. He said since I’m not taking venlafaxine for migraines anymore that gives him more options for medications for depression and anxiety. He asked what I thought would be best and I said I thought it best not to change my medications at this time, and he ended up agreeing with this plan. Still, that he was considering adding more medication because I still have depression symptoms kind of surprised me. I don’t expect anti-depressants to make me completely not depressed anymore, I just need them to get to a level where I am capable of managing my depression with various coping skills.

I’ve never seen medication for depression as any kind of cure all. Unlike something like IH where my goal with medication would be a complete reduction of symptoms, for depression I always see therapy and coping skills as the first line of treatment, and medication as the second. And I’ve always viewed that second line as meant to complement the first, not replace it.

Not All Physical Activity Is Equal

I had a pretty good day at the gym this weekend. Since trying to get back into swimming some, I’ve mainly been able to get in 3 laps tops before I get too sick to continue. It’s a bit depressing compared to prior to May when I was swimming 10 laps as a cool down after my “real” workout.

I am working on focusing on what I can do now though, and less on what I used to be able to do. This weekend I was able to do 2 sets of 5 laps at the gym. I wasn’t even feeling that ill by the end of the 5, but I don’t want to push myself to do too much too fast and then get sicker again. There isn’t much I’ve found on exercise advice for Intracranial Hypertension, other than avoiding things that could result in trauma to the head (ie even if I could do Krav Maga again physically, it might not be recommended since I risk getting hit in the head.) Intrancranial Hypertension is said to have a lot in common symptomatically with Chronic Fatigue Syndrome though, so I have been trying to look at exercise advice for CFS as a guideline as I proceed.

(My neurologist has told me only that exercise would be good for me, via email. I have still not seen her or spoken to her since diagnosis, despite repeated attempts at getting an appointment. So I’m relying heavily on my own research, with a little bit of info provided from emails from her.)

Even though I am making some progress with swimming, standing remains as much a challenge as ever. I may not have felt very ill swimming those laps, but standing several minutes to shower after did make me quite ill. There is something about an upright position that makes me worse. Swimming is easier that standing or walking. Wheeling myself about in a manual wheelchair doesn’t make me as ill as walking, though my upper body strength is not up to par for doing too much of that. But the trend is clear. Sitting is better than standing, being fully horizontal is better than sitting, even if I am doing using roughly equivalent exertion in each position. Though maybe it is an issue of which muscles are most activated. I’m not sure. I don’t know why, I just know how it is for me.

Even for me this is a hard thing to fully accept though. I have had trouble letting myself get back into swimming because I feel bad using energy to swim instead of taking my dog for a walk or doing chores. I’m working on accepting that doing what I can do is good for me, and I can swim often even when I can’t walk or even stand.

When You Can’t Work Anymore

I’m not there, though I did just have to take another sick day today. It’s something I constantly think about though.

The more I think about it the angrier I get at every time I’ve heard people talk about their neighbor faking back pain for disability, or someone trying to get disability benefits for being left handed. I’ve long considered these no more than the disability version of the welfare queen myth- being just as inaccurate.

Now it’s more personal though and I get more angry. These people think being on disability benefits (SSDI or SSI) is fun? Some glamorous lifestyle?

Just about everyone I’ve met who receives SSDI or SSI would rather be working. Many fill that desire to work by volunteering in their communities or other uncompensated work for family, neighbors, and their community.

And talking to other people the desire to do whatever we can to avoid needing SSDI/SSI is common.

It reminds me of a man I met during my community organizing days who talked to me about things he did in his community and how upset he was about not being able to work. The problems he had with a job, without going into detail, I remember thinking, it’s not unreasonable that employers can’t work around that.

Today I can empathize a lot more with his situation. I can’t say my illness isn’t going to be frustrating for an employer- I take a lot of sick time, I need time off for procedures and tests, and other symptoms can be annoying to deal with- I know, I have to deal with them all the time. Yet at the same time I think about all the things I can still do- which is basically everything I could before except a few select things (I don’t like phone calls with clients because of my hearing problems, I can’t lift or walk far but that’s rarely been a core part of my job (with community and union organizing being the exception).

Side note- also reminds me of a previous job when I was having a real rough day with the fatigue and pain problems I had prior to this Intracranial Hypertension issue, we had an event and at the end my boss asks if I can carry some boxes. I ask how much she needs me to carry, and explain that I’m not well and can’t carry a lot very far (I asked specifically because last time I had been left to pack up and carry EVERYTHING myself, and had to carry it a fair distance.) Fast forward an hour or so to a meeting with my boss and the director about me refusing to be a team player because I dared be open and upfront about my physical limitations at that time. This was not a normal part of  my job, it was the second time in about 3 years this came up, and I didn’t know I was being left to carry so much the first time- also it was not a bad day so I managed ok that day. I had no reason to think before being asked that day that I would be expected to carry a lot of heavy boxes for several blocks that day. Yeah, I’m still a bit angry about that. There is no world where not asking me to do that when it’s not a normal part of my job wouldn’t be a completely reasonable accommodation. And employers are not required to be notified about disability issues that do not impact your actual job. I didn’t bring this up sooner because there was no reason, given what my job was, to expect this would be an expectation of me and something my employer would need to be informed about.

In summary, now that I’m here, I see a lot clearer the frustration of me seeing what I CAN do while others only what to see what I CAN’T do.

Benefits of Letting Go of Hope

So this morning I woke up early, after having been up most of the night in too much pain and too nauseous to sleep, and I put on clothes, got my shit together, and headed out to the Sangha (Zen Center) I used to go to. I had barely started going when before becoming so ill, and I haven’t been in the 6 months since. Getting up on a Sunday, getting dressed, and leaving my house in time is a monumental task these days.

But today I forced myself up and made myself go. Was that because this morning I had more spoons? Was I feeling relatively better? Hell no! Actually I’ve started feeling worse again.

So why did I make it today but not any of the Sundays of the past 6 months? I’ve been letting go of hopes that were holding me back.

I want to be clear about letting go of, not losing. I don’t mean any sense of hopelessness in this case, but it’s about those “hopes” that can come with the unknown and that can stop us from living in the now. This is a benefit for me of both a partial diagnosis and in the process accepting that one way or the other, I’m not one test away from knowing what’s wrong and being able to treat it and go back to how things were. I have to let go of that hope. I couldn’t do that when I was still so actively in the diagnosis process because it’s all about questions and uncertainty.

I don’t know for certain I’ll never get back to some things I used to be able to do. I don’t know for certain I’ll never get better. Actually, I still do hope for that. But I’m not letting that dictate my life anymore. I can’t live in a perpetual “until”.

So that means I need to learn how to make room in my life for things important to me. Now. How I feel now.

My spirituality is important to me. In fact, I find Buddhist teachings very meaningful in dealing with chronic pain and illness.

And I have to relearn some things too. My legs fall asleep so easily now from my medication, I can’t sit in the same meditation position as before, I discovered. So now I have to find a new position that works within my physical restraints now. Not sit back and wait until that magically time when the old way works for me again.

None of this is to say it isn’t hard. I suffered the rest of the day for my decision to get up and go to service. I’m glad I did. I don’t regret it. It cost me a lot though (cost me in spoons, not actual financial cost).

This is one thing I feel like many able-bodied/non-spoonie folks don’t get. Something can be simultaneously good for us in one way, yet still wipe out our entire account of spoons.

My spirituality helps me deal with being ill. But also, going to the zen center will leave me feeling horrible the rest of the day (or longer). I have to give up a lot for that spiritual, emotional, and psychological benefit.

This is why not having a diagnosis is so hard. It makes it nearly impossible to plan anything, because everything is always unknown. It’s not an answer I want, but it’s easier to cope with being told that this is just my life now and I have to adjust to it.  That allows me to let go. To live in the present instead of the constant uncertainty of the very near future.

If you’ve never been so ill with no diagnosis, I don’t think you understand how even a “bad” diagnosis is better than not knowing. There was never any relief in normal test results. There was no relief to hear my MRI was normal. Telling me I a giant cancerous growth would have at least given me answers. Nothing is worse than not having answers.

The Personal Is Political: Disability Edition

One thing I forgot to mention in my last post is the ongoing struggle of coping both with this illness and all the unknowns and uncertainties and changes that come with it, and trying to cope with the uncertainty and fear as the current federal government attempts to fuck over our health insurance system.

An ACA repeal is scary enough for me. I am currently employed in a position that was created by the ACA, so I don’t know if my job would still exist if it was repealed. Based on his comments immediately after the election, my boss doesn’t know if it would exist either. All we can do is keep working and doing what we do until something happens. But that’s a scary place to be.

And if I lose my job… well, I can’t buy individual insurance without the ACA protection for pre-existing conditions. I tried that before that provision of the ACA took effect. It wasn’t even a matter of being too expensive, insurance companies flat out refused any coverage for me. Before the Intracranial Hypertension and severe mystery symptoms. Without medicaid expansion it is unlikely I would qualify for medicaid.

Of course now we are in whole different ballpark, to use a sportsball analogy even though I’m not a sportsy person. The ACA stands. Repealing it is not looking likely. So instead the president has decided to fuck over our entire health insurance system. I’m currently covered through a workplace insurance policy, and I do not receive obamacare subsidies- but you are missing the big picture if you think that is all this is going to effect. He is throwing the entire industry into chaos on purpose. This is going to effect people with insurance whether they receive subsidies or not.

I find it hard to put into words how stressful this is. I find it hard to convey to people who aren’t dealing with a severe, chronic illness how difficult, scary, and exhausting it is to try coping with both the illness and this clusterfuck situation in the White House at the same time.

This is also why I get frustrated at chronic illness groups that say they don’t allow political conversations… living with a disability or chronic illness is political! You can’t avoid that. For my friends and family who rely on government disability programs, their entire income and ability to get by is “political”.

Yet also, because my personal life is so tied up in current politics, when I try to speak out about it publicly, I frequently get accused of lying about being ill. I wish this was all some big trick to fool people on the internet into thinking sabotaging the ACA isn’t a good thing. That would be a lot easier. Instead I’m left wondering why it’s so hard for some folks to believe that folks with disabilities and chronic illnesses do exist, read the news, and have internet access. My symptoms might baffle doctors, but that I’m very ill and very afraid of what would happen if I didn’t have insurance/couldn’t afford insurance because there is a spiteful toddler running this country shouldn’t be baffling to anyone. I have a rare disease, but the situation of being ill and fearing losing insurance because Trump is treating this like a game is far from rare.

It’s Been Awhile: Therapy,  Medications, and Work.

An artistic ode to the many side effects of acetazolamide.

Sooo my goal of updating here daily kind of fell apart, huh?
I guess in a way a “lot” happened since my last post.

I had my first actual therapy appointment since being diagnosed. I’m on thin ice with mental health care (therapist and psychiatric PA who prescribes my meds), being sick and dealing with memory problems I forgot appointments so often I was almost discharged as a patient. Whick they try to spin as somehow being for your benefit, as if cutting me off from mental health services is in any way in my best interest. It’s in the health system’s interests because they don’t get paid by my insurance of I don’t show up (and I understand that, i just roll my eyes when they won’t say that’s why).

So of course I got caight in standstill traffic and was ruining late to my appointment! I called the office who at first digested rescheduling me for an opening that afternoon, then said it wasn’t an option, then said come in late and she’d still see me. A block from the office my therapist calls asking if I forgot the appointment. Somehow no one actually told her I called about being late *facepalm*.

But we talked about how I do feel better now having a diagnosis, even if it’s a partial diagnosis, it’s something! Something I can research and learn about and understand is so much easier to deal with than the complete lack of answers before. And Intracranial Hypertension at least explains my memory problems. There is also that relief of, “I knew this was happening! I knew I wasn’t imagining or making up the memory loss!”

We also talked about what I posted about on here about the grief aspects that comes with it. As well as how I’m still in a transitional, unsure phase with this. I don’t know if the IH explains my fatigue entirely. I’m remain not fully convinced it’s not secondary IH. I dont think I’ll feel convinced it’s definitely not unless the IH treatment starts actually helping my fatigue, nausea, muscle weakness.

I’m truing to use this as inspiration for my art, but I’m so exhausted all the time and struggling to keep up with work so art pieces take me much longer to finish,  and longer still to post for sale (I’m way behind on that).

My acetazolamide dose effects have drastically decreased though. Much less severe than when I started! They feel very manageable now.

This past week has been even harder than usual with my illness. Most days I’ve been so nauseous, even just sitting, neither zofran nor compazine touched it. And that makes it really hard to take my pills.

Work remains hard. My memory is better, but not back to normal, and I’ve not fully adapted to this. So it remains a big problem with work.

Meanwhile I have an intern working with me now- benefits, he can actually keep up client contacts if I have to take a will off on fmla again. Downsides- I get to add worrying about my obligations to him as an intern to my stresses.