Waking up and changing course

What was I thinking?

I am going too far down the medical road and I’m just getting sicker.

I’m depressed because I’m always home and have no plans for my future. But I can’t tell what’s caused by my illness itself and what’s actually caused by all the medications I’m on, since all of them list side effects similar to what I’ve called my MS symptoms.

Somehow I let the doctors convince me that my resistance to medication was paranoid and anti-science, and I should just start taking even more medication and let them help me. Be a good girl. *pat, pat*

And they almost had me completely convinced that I couldn’t trust myself or my own gut feelings or the extensive, exhaustive research I’ve done.

But I decided today that it’s definitely still within my power to turn things around, so that’s what I’m going to do–starting now.

Instead of getting on the disease-modifying drugs, which completely terrify me, I’m changing what I’m doing, since there’s no cure either way.

So my first step is to wean myself off my current medications. The two medications I’m taking every day to reduce pain and muscle spasms are most likely causing a lot of my cognitive problems and memory loss. A third medication I’m on is also contributing to my memory loss, dizziness, and poor balance. Unfortunately, with one of my meds, I have to taper off of it very slowly so I don’t have seizures.

When I was taking super high-dose steroids last year to try to reduce the inflammation in my brain, I didn’t know that the steroids themselves were also making me worse in terms of cognitive function and physical pain. Why didn’t I research them? Why did I take the doctors’ word for it? I mean, I did a cursory glance and saw that long-term use could damage my bones and cause insomnia, but you have to search specifically for steroids + pain or steroids + cognitive issues to find that out.

I thought I’ve been much worse in the past year because my illness has rapidly progressed, even though I have no MRI or other test results to back that up. But actually, in the past year, I’ve been more heavily medicated than I ever have before in my life. The medication side effects actually do explain a lot of my symptoms, especially when you account for the multiplicative effect of taking several.

The only other time I was medicated to a similar degree, I was in college. I had one semester when I was so sick that all I could do was sleep. I lost a ton of weight because I couldn’t eat. I was on regular high doses of tramadol (Ultram/Ultracet), which is also a drug that can cause cognitive problems and memory loss. I now remember virtually nothing of that time period and honestly, I seriously don’t know how I graduated magna cum laude, given that semester.

I don’t know how much of my memory loss always existed and how much has started in this past couple of years of being heavily medicated. I’m careful not to blame the meds for everything; I do indeed still have MS and depression.

But the getting weaker and more easily confused and unable to function without at least seven hours of sleep (preferably up to 10-12 hours) is new. I was better just a couple years ago. I started taking some of the meds I’m on now about three years ago and added more meds last year.

I honestly don’t believe diet is a cure for MS. But the fact remains that I’ve gotten a little more lax about my diet since my husband has taken a second job. I also need to do more strenuous exercise than just walking, especially because my back and core have gotten weak. I have gotten the most toxic and stressful relationships out of my life, too, even if the process of doing so was initially painful and difficult. I’m on the right track but I need to be more committed to doing better.

I think I can really turn this around. I really do. Maybe not a cure, but I think I can be healthier and more functional if I take better care of my health on several fronts.

As for my future, I’m planning to get back to where I was before I got sicker and was hospitalized last year. Specifically, I want to go back to grad school.

I really don’t want to be a writer anymore and I already know that. I like making soap and crafty stuff as a hobby, but I really don’t have an entrepreneurial spirit and don’t want to run my own business.

I want to work again, even part-time, and I really desperately don’t want to continue being a freelance writer. I just don’t know how I’ll arrange transportation for my kids otherwise until we can get an extra car or two so my dreams may have to wait two and a half more years until my youngest graduates.

So now I just have to decide what I want to study in grad school. I’ve said all along that if I got disability, I wanted to work part-time in a library. I already tried grad school for library science twice and quit because I was basing its value on the lousy job outlook for librarians in Michigan.

While there are more jobs for librarians here, they don’t pay all very well considering they require a master’s degree. If I looked and waited, I could probably get a full-time library job without the additional degree that paid nearly as well. I’ve seen similar jobs before and even got an interview for one. (Seriously, some librarian positions with the masters degree only pay around $40K. Not sure that’s worth the extra debt for the grad degree, although simply having a graduate degree would be a point of pride for me.)

I could also get a specialization to be a medical librarian, which would be even better. I already know that libraries in general are the work environment that suit me best. But a medical library is the only environment that seems like it might be even better. This specific dual-degree program in library science and health science has courses in epidemiology and ethnic and cultural factors in health delivery! Both of those courses excite me, but the latter ties in especially well with my undergraduate degree in sociology.

I don’t think I can make massive changes in my career direction at my age (e.g. I don’t think I could go back to become a labor and delivery nurse), but libraries and public health outreach are both within the range of what I’ve done before.

I also still want to be a therapist and that’s attainable. I think I’d be really happy with it. I was already planning on going back to work in that field even if it was only part-time. But honestly, I’ve wanted to work full-time all along. I have a good feeling of hope that once I get off the meds, I won’t be showing as many signs of disability.

When I had my full-time job in Downtown Dallas, I wasn’t on any meds until the last month or two. It was admittedly hard for me to learn the new software for which I was providing tech support, so clearly my brain isn’t as sharp as it once was, even without meds. However, the job itself wasn’t as draining until I got on meds. I’m pretty sure the stress of an unstable department and a high-strung boss led to an MS relapse and it went quickly downhill from there.

But the things I always knew are still easy for me and I never lost them: working in libraries, researching medical stuff, and writing.

I don’t know if I’ll try to work in a library or therapy role while going to school for my master’s degree or if I’ll just try to take it slower.

I don’t know how long it will take me to get back to normal once the medications get out of my system. Some things I’ve read have said months, but I am also stubborn and I can push through a lot.

If I somehow get approved for disability on the first round, I may use that as a transitional period to get my health back before I return to work. Especially because disability pays for a certain amount of extra money to help you get back to work, whether it’s additional education or therapy you need.

But honestly, I’m still hoping I can eventually work full-time again soon. It’s what I’ve wanted all along and I was so depressed at the thought that I’d never get to again.

I came so close to giving up on myself forever. Thank God I figured it out before it was too late. I’m going to take control of my health and my future again, and I think everything is going to be alright.

It’s never that simple

I decided that I guess I would take the MS meds after all. But despite that fact, I am still absolutely terrified of the meds.

More specifically, I’m terrified that I will die as a direct result of the meds. That’s not an entirely unreasonable risk, either, even if it’s statistically uncommon.

First up is Ocrevus, which scares me a lot because it’s new and there has already been an FDA investigation launched because of associated deaths. This is not surprising because the FDA halted trials of the same drug due to too many deaths in both rheumatoid arthritis and lupus before it somehow got approved for MS.

My neurologist now requires more frequent MRIs when you take Ocrevus because they expect to start seeing increased cases of the deadly brain infection PML. Since the symptoms of PML are so similar to the symptoms of an MS relapse, it can be hard to detect it before it kills you. Once Ocrevus is in your system, you can’t get it out for six months.

It’s not hard to predict that there will be more Ocrevus deaths from PML because there are PML deaths with Rituximab, a sister drug nearly identical to Ocrevus but not as often used in MS patients.

So my neurologist said that if I don’t want to take Ocrevus, I can take Gilenya or Tecfidera instead. But those are both also at higher risk for causing PML. Because I am very high-positive already for the JC virus that makes MS drugs more likely to give you PML, none of these are great options.

In addition to all that, people on Gilenya have to have their heart monitored during the first dose due to the risk of sudden cardiac death while taking it. But that cardiac risk doesn’t go away after the first dose and people can and do die from sudden cardiac events on it.

My mom had a heart attack at just nine years older than I am now, I know that I have grade 2 diastolic dysfunction, and my cardiologist wanted me to get a stress test two years ago to measure my current risk but I didn’t get it done because I didn’t have the $800 for it. I have chronic anemia that isn’t changed by the fact that I have consumed two cups of spinach every day for over a year. I don’t know what’s causing the anemia but I do know that it’s damaging my heart.

So I definitely don’t feel safe taking any drug that has a risk of sudden cardiac death. Those outcomes may be exceptionally rare, but I’m at higher risk than the average person.

Part of the meds decision is definitely also about my insurance. It’s so bad that I know I can’t afford all the tests I need to make sure I’m safe on these meds. It’s also so bad that if I’m feeling unwell, I’m going to put off going to the ER because I can’t afford it.

In fact, that’s exactly what I did last year when I was hospitalized the second time. Before I went to bed, the right side of my face was drooping on one side and I had all the typical stroke symptoms, but I still went to bed to try to sleep it off anyway. Given that they had a hard time determining if I had a stroke or an MS relapse once I went to the hospital the next day, I realize how risky that was.

But with the insurance I have, I’d probably still do the same if it happened again. And for that reason, I walk around in a pretty much constant state of fear. I know I can’t really get the help that I need when I need it, at least not without putting us in debt and causing financial hardship.

So is it really a good idea to be on a high-risk medication?

At the same time, the doctors and the pro-meds people are pretty great at giving effective guilt trips–especially because I’m getting worse. Don’t I want to try to stop this from getting worse than it already is? Don’t I want to be alive and healthy for my husband and kids? Don’t I (dare to dream the impossible) hope to someday be well enough again to pursue a career or regular activity that gives meaning to my days?

I guess it comes down to the fact that I already know how I feel now, and I’m likely to feel worse on any meds I start.

I could try taking an older interferon drug instead, but those have known side effects of making you feel like you always have the flu plus causing severe depression. I already know severe depression and I’m sure I have it now (who wouldn’t, after having to give up their hope of a career?) But all the antidepressants always make me feel worse than when I’m not on them.

Maybe that’s just what life is when you take meds for a chronic condition: feeling constantly headachey, nauseous, gaining weight (since every med causes weight gain in me), but in return, you might get some symptom relief of your main illness?

In the case of MS meds, I can’t even expect symptom relief, just that I might not get any worse.

Depression meds have never been worth the trade-off so far, either: in addition to the side effects, the way they work never actually makes me feel good. Antidepressants do take away the depression but they also make me feel completely flat, unable to feel happiness at all. That doesn’t seem worth the weight gain, headaches, and nausea.

How do I know that MS meds will be any better? Will I have constant headaches and nausea and flu-like symptoms, while also literally risking my life, just in the hopes that I can be around longer?

I know this is the depression speaking, but I guess why do I want to be around longer? If I never feel good again, if I can never have a career, I’m just marking time hoping to be there for the bright spots when my kids graduate, get married, etc. Assuming I live even 20 more years, that’s a whole lot of time spent sitting at home doing nothing, not feeling well.

I want to turn back the clock to when I didn’t have these problems. When I could think clearly. When I still had hopes and dreams and a reason to believe I could make them come true.

Yet despite all this, I’m still ironically afraid of taking a drug that will kill me. I have just the tiniest sliver of hope and value for my life that someday it will get better again, but I don’t have enough hope that the drugs will make that happen to want to risk my life.

But even if it will make my quality of life worse and might kill me, I feel like I owe it to my family to do what mainstream medicine says is the right way to treat MS. Because then at least I tried and they won’t be able to blame me if I get worse.

Honestly, it really feels like my life is over either way. Maybe I can prolong some of the things I enjoy like driving, even if I can’t make it to concerts or travel or shop for long anymore. Maintaining fucking basic functions like driving and walking has to be my new reason for hope. And to be honest, that just doesn’t seem like much to keep me going for the rest of my life.

More revelations about MS meds

Last night, I continued thinking about my neurologist’s visit after I wrote the other blog post.

A weird idea popped into my head which I haven’t been able to shake: when I talk about MS meds, I sound like an anti-vaxxer. I’m the Jenny McCarthy of MS. Maybe not quite that extreme, because there’s more evidence of vaccine safety and a lot fewer risks, but still.

I did space apart my kids’ vaccines after my middle son had a documented vaccine injury. I have never gotten a flu shot and neither have my kids. I’m a little wary and distrustful of the FDA because some dangerous meds and vaccines were rushed to approval, only to discover they actually killed people. So I tend to be skeptical (I think with good reason) but I usually give in anyway and try to control my risk factors.

But I noticed how many things my beliefs about MS meds had in common with the anti-vaccine movement. Such as:

  • Nutrition solves everything. If you get sick, it’s your fault for not being strict enough about your diet.
  • There is mostly only anecdotal evidence that nutrition and supplements are more effective than mainstream medicine.
  • There is a handful of doctors who buck the mainstream, who are presented as the only unbiased source of truth.
  • There are always documentaries following the renegade, self-styled experts who are taking on the mainstream medical community. It worked for them–it will work for you, too! (Have you tried juicing, by the way? How about essential oils?)
  • There’s a heavy conspiracy theory element that says the mainstream medical community is all corrupted by money and that’s why they don’t even investigate whether these simple alternative therapies work.

I’ve been open to alternative medicine for as long as I can remember. For years, it was actually the basis of my writing career. And some of it really does work. I also know that good nutrition, stress reduction, and adequate exercise are important for everyone’s health, with or without MS. And most Americans do poorly on all of those fronts.

But if it were that simple, wouldn’t countries with better nutrition and lower stress (e.g. most other Western countries) have lower MS rates than the U.S.? Why don’t they?

If nutrition was all you needed to “cure” MS, then why has it been so difficult to replicate the work of people like Dr. Terry Wahls and Dr. Swank?

Why am I supposed to believe the small handful of doctors and their followers who say nutrition and supplements are the answer, compared to the thousands of doctors who say that the conventional medicine isn’t a cure but it’s better than doing nothing because it has extended the lifespan for people with MS by about 20 years since they were introduced?

The fact of the matter is that even though I’ve made major improvements in my diet (including having a minimum 5 servings of fruits and vegetables every day for more than a year), I’m still not getting better. I’m actually getting worse.

I already trusted my old neurologist because he didn’t push meds on me before. The fact that he did so this time was a wake-up call. He obviously sees more people with MS than I do. He sees what happens to people who don’t take the meds. I don’t. He said I had gotten noticeably worse in the past two years and would likely continue to do so if I don’t take the meds.

Given how rough the past year has been on my health, that actually terrifies me. He said I was on the verge of needing a cane now and would be safer if I had one. I already suspected that.

I know that meds may not work for me; some people still get worse even on the meds. I don’t know how I will afford the testing and treatments that go along with taking meds. I know I’ll have to put up with side effects, and I usually bail on meds pretty quickly (within a week or less) if I can’t live with the side effects.

I’ve often wondered if many of the antidepressants I’ve taken that I said didn’t help me actually might have worked, if I had stuck with them past the adjustment period. Lexapro was the only drug I took where I felt like the side effects endangered my life. The rest just made me feel really miserable, but might have theoretically made me feel a lot better within a few weeks.

So assuming I can find a way to get meds and get the regular testing, I have to give it an adequate trial for real. I can’t bail on meds just because they make me feel bad, unless they make me completely unable to function.

I take Tylenol when I have a headache. I take muscle relaxers for the spasms in my legs. I’m not really living a totally natural life that suggests I should take the no-drugs approach to treating my MS.

I know the other side would say I need to stop taking Tylenol and muscle relaxers, get stricter about my diet, regularly engage in intense exercise, and then my MS symptoms would be manageable without drugs.

This is the most irresistible fantasy that I always fall into, because that means I have only myself to blame for being sick.

Realistically I’m not going to start doing those perfect things for my health if I haven’t yet. And in the meantime, I have to do something. I think I’d rather cast my lot with the majority of experts for a while and see what happens.

The medication question pops up again

I went to see my old neurologist yesterday. I wasn’t super impressed with him before, but at least he would prescribe medications for symptom relief, which the new neurologist I saw last year would not. I liked that my old neuro never pushed any of the disease-modifying drugs on me before — in fact, he never even suggested them.

Yesterday was a whole different story, though. After reviewing the results of the tests done during my hospitalization last year, he’s now saying I should take meds.

I asked if he thought I was secondary progressive and he said “that’s hard to tell for sure, but you’re progressing quickly now so you need the meds to try to stop it if at all possible.”

He wants me to start with IVIg treatment because steroids never wipe out my relapses anymore. Honestly, I would love to get the IVIg. But I also have terrible insurance and money is so tight since I had to quit working. I’m sure that because I haven’t hit my deductible yet, the IVIg will be completely unattainable for me.

After that, he wants me to start on the Ocrevus, which I’ve mentioned I’m terrified of because it’s so new. Even if I were willing to take it, I’d have to get MRIs every four months because once Ocrevus is in your system, you can’t get it out for six months. Their practice standard is MRIs every four months to see if the deadly brain disease PML is beginning to develop.

I have to pay for MRIs 100 percent out of pocket because of my crappy insurance. I haven’t even been able to get one a year, let alone three.

I’m high positive for the JC virus which means I’m at higher risk of developing PML with many of the other drugs. He suggested maybe Tecfidera or Gilenya, even though those also carry a higher risk of PML. He agrees that Copaxone will not likely do anything to help me, but suggested Rebif. When I said I was concerned about that one because it’s linked with causing depression and I already have major depressive disorder, he shrugged and asked why I wasn’t taking an SSRI.

I said I had taken nearly every SSRI and had bad reactions to them, so he suggested taking a newer antidepressant. Which again, my crappy insurance won’t cover.

I’m frustrated because I’m back to square one again. I had already decided I wasn’t going to take the drugs. But my neurologist said I’m clearly worse than I was last time I saw him two years ago, which is true. The relapse I had last year was really bad. Two years ago, I was still able to work. He says I will keep getting worse if I don’t take them, but he can’t actually know that. People take meds and still get worse on them. Some people also take meds and credit the meds with not getting worse.

Due to the nature of the disease, no one — not even the doctors — can know if the meds are working. There’s no correlation to the appearance of your brain on MRI and your symptoms. My MRI has not changed at all in five years, yet my symptoms still get worse. I haven’t been on any disease-modifying drugs in that time. Is that why my symptoms got worse or would they have gotten worse anyway?

Most doctors measure the success of an MS drug by whether or not you have new lesions on MRI. Since I haven’t had any new ones since being diagnosed, what is the intended outcome of taking them? How would you define success of a treatment?

Who do I believe? Do I take a chance, even though the drugs are really scary to me?

If no antidepressants have helped me so far, why do I think the MS drugs would? There’s certainly an element of confirmation bias, in that you get an outcome similar to what you’re expecting.

But there’s also the undeniable fact that money and insurance are major factors, whether or not I want them to be. I would be much more likely to take the chance on the medication route if it wouldn’t be so cost-prohibitive. I know there are assistance programs for the disease-modifying drugs, for example, and I’ve heard that you can get assistance for an annual MRI from the MS Society. But will they cover three MRIs in a year?

There are still all the other costs with having MS that make pursuing treatment a financial hardship. At a hundred dollars for a specialist visit (aka the neurologist), that adds to the budget. I didn’t expect that my share of the cost for the JC virus blood test would also be $100 (since my blood work is usually free) and there was certainly no assistance for that.

Part of me thinks there must be something wrong with me that I don’t have the money for these extra $100 things here and there. But at the same time, MS is just plain an expensive disease to have.

And now I’m back at where I started, having gone through this several times before. After getting the hard sell from another neurologist, am I sure that I don’t want to try the drugs? I know for sure that I actually do want to take the IVIg treatment but probably won’t be able to.

But really, unless the neurologist himself is offering to pay for any of my treatment and associated testing and office visits, I may have to continue opting out but saying it’s intentional. I’m not going to bankrupt my family over treatments that I’m not even sure will work and might actually harm me.

Time to bury the conflict girl?

I’ve called myself “conflict girl” since I was 18. It was my username on lots of forum websites and I’ve had numerous blogs with that name. It’s just how I’ve defined myself.

The origin of the name is not because I enjoy conflict. I actually really hate and try to avoid interpersonal conflict. Rather, it represented the duality within me, my ability to always see both sides of any issue.

Even if I was personally liberal, I could understand why people would be conservative, as just one example. I was really good at studying people and trying to assess their motives. Sometimes this trait has worked to my disadvantage, when I have given people the benefit of the doubt when they didn’t deserve it. And sometimes people were able to keep secrets from me well enough that my skills were completely useless in seeing the real person underneath and what they were hiding.

I often forget that not everyone else looks at both sides of every issue. Not everyone is able to put themselves in another person’s shoes as easily as I can. My tendency to do so almost automatically meant that I often felt like I was constantly pulled in two different directions simultaneously. It was both a blessing and a curse, but I felt it defined me better than any other trait.

But I’ve mentioned that I’m clearly in a major transitional phase now, a massive life shift. A lot of things about me are changing — or maybe more accurately, not changing as much as they are becoming more refined and clarified, like sharpening the focus on a microscope. As a result, I’m rapidly getting a really strong sense of clarity about who I am and what my gifts and strengths are and what my priorities are.

But as the focus sharpens and zeroes in on a few things, things on the outer edges fade. Some things and relationships are moving outside of the range of vision altogether and are ceasing to have any importance. It’s both exciting and liberating but also a little scary.

One of the things I’ve come to realize is that I don’t think “conflict girl” describes me anymore. For one, I think it conjures up images that I’m in conflict, like fighting, which was never true. But now even the mistaken impression that it could be true bothers me.

There’s also the fact that at 44 years old, I’m obviously not a “girl” of any kind anymore — I’m a woman. I always thought it was kind of cute and sassy to call myself a girl (and not to mention, “conflict girl” seems to sound better than “conflict woman.”) But I’m also trying really hard to stop referring to grown women as “girls” in general and for some reason, it’s surprisingly hard for me so far.

One of my pet peeves is this widespread idea that “adulting” is so bad, like we’re collectively in a state of arrested development. If we call ourselves a “girl” well into our forties, when do we actually grow up? Are we afraid of growing up, on some level?

I’ve realized that I am no longer afraid of growing up, afraid of growing older. I’ve accumulated a lot of wisdom in these 44 years and I think it’s worth something. I don’t want to be stuck in perpetual girlhood forever. Being an adult actually doesn’t suck.

There’s also the issue that I’m not sure the chronic indecision still fits anymore, either. Although I can still imagine myself in another person’s situation in a good and empathetic way, I now feel like there is a definitive truth. Even feeling as though I think there’s a definitive truth seems like a bold step, as I think society views anything less as intolerance.

It doesn’t change how I treat people. But I do have a clearly defined sense of what I believe now. I don’t feel as unmoored anymore. And having a clearly defined set of beliefs means that a persona which embraces all possibilities as equally valid doesn’t really make sense anymore.

I can easily say I’m not the “conflict girl” anymore. But how should I express my identity instead?

I’m going home

I’ve noticed a theme running through my entries of the past few months: I miss my home.

Yesterday was my dad’s birthday, so I called him to chat. At the end of the call, I said something about hoping we could find a way to see each other again, since it’s been four and a half years.

He said, “Actually, Mom and I have been talking about that for about a month and I just double-checked that it was still okay before you called. What do you think about flying up here for a visit soon?”

So sometime in mid-October, they’re going to buy me a plane ticket and I’m going home for a visit. It’s up to me how long I want to stay, whether a couple days or a week; I’m leaning closer toward 5-7 days.

My little family are all really capable but I’m going to miss them intensely. My insane but needy cat that we adopted in December is going to absolutely freak out with me being gone that long. But there’s no doubt in my mind that this is the right thing to do at the right time.

I have to make some transportation arrangements for the kids, including for my middle child, who starts his first job on Monday (which is very exciting!) And I am waiting to see one of my oldest and most loyal friends before she moves to San Diego in about a week. But after that, I’m free to go.

My parents are getting older and can’t travel as well anymore. I can’t physically handle driving two days to get there and two days back anymore like I used to and can’t afford to buy plane tickets. With juggling kids’ school schedules and jobs, even if we had the money for everyone to fly, it would be nearly impossible to coordinate.

My parents were clear that they want it to be restful for me. When I used to visit home when I lived here in the 90s, visits were insane, tightly packed, and rigidly scheduled to see as many people as possible. There was nothing relaxing about it and it definitely did not feel like a vacation.

This visit is more casual. There are no big family gatherings scheduled, in part because I don’t have much family left. I’m going to go visit my grandpa, my last remaining grandparent, who’s in assisted living now and reportedly doing quite well. But with the infrequency of my ability to visit, it will very likely be the last time I see him alive. And it just makes me cry and cry to even think about that — I can’t imagine how I’ll hold it together when I’m there.

My parents said I can take things at my own pace and they’re aware of my need for more sleep, but I can spend time hanging out with them and seeing any of the things that I want to. Of course, I want to get caramel apples fresh from the orchard and a steak sandwich from my favorite mom-and-pop restaurant that’s a local legend. I can get the good crab/cream cheese wontons that I’ve craved ever since I left.

I desperately want to see my parents again, to get lots of time to catch up and talk and hug them and let them know that I finally, finally forgive them and see them with more fairness and objectivity than I ever could before. They already know that stuff and have ever since I was hospitalized last year. But sometimes you just have to reconcile in person.

But to the same degree that I want to just enjoy their company and get lots of hugs and cry, I’m also ready to finally say goodbye to the area where I grew up. My dad said I could borrow his car if I want, and at first I couldn’t think of where I’d want to go.

Then the ideas started to come to me. I want to drive past the house that my husband and I owned there. I know the new owners have had the money to fix it up in ways it needed but we could not afford. (I almost wish I could meet the new owners and apologize, but I have too much shame.) I can also drive by the house I grew up in, which my parents moved away from almost 20 years ago, but it went through a massive house fire a couple years ago and sits vacant, unrepaired.

I want to visit my grandmother’s grave, the woman who was married to my grandpa who’s currently in assisted living. I didn’t get to go home for the funeral and I want to see where she’s buried. I want to sit by her grave and cry about not ever having been close to her. To tell her that I always wished I could have had a relationship with her and that I’m sorry that I always thought she was kinda mean and that I forgive her because I have no idea what she experienced that made her that way.

Circumstances required that when I moved here, it took a lot of boldness and quick action. I was quite literally gone with less than a week’s notice and didn’t know if I’d make it here and stay or be returning home a failure. I didn’t fail, so I spent four lonely months preparing for my husband and kids to join me. But I never saw my home again.

I don’t ever regret that I moved, but it’s only been in the past year that I have begun to mourn that there were any good things that I left behind.

I spent so long insisting the whole place was a shithole and in many ways, it was. It’s always cloudy, which lends it a nearly permanent air of gloom. The town I grew up in is one of the most violent cities in the country. People I went to school with and people I worked with died in gun violence there. It has one of the highest rape rates in the country. More people than I can count have died by suicide there, including some of my friends. Sadly, my greatest association with the area is death, which is probably why I’ve never found horror movies entertaining. I lived it.

My husband spent so much time there unemployed, despite his great skills and experience, and would have been again within two years of the time we moved. Because he recommended his own replacement, he found out from her when the job was permanently gone. (It took her more than six months to find another job after that, which also laid her off within a year.)

There’s no question that life for us there was hard. So hard. We weren’t one of the lucky ones like my sister’s husband to get a 6-figure job at Dow, the one solid employer in the area. The environment where I grew up was heavily contaminated (by Dow) and that likely played a major contributing role in my MS. There were so many valid reasons for me to have a grudge against the whole damn place.

When I left, it was with an attitude toward the town like “fuck you, good riddance.” And it took me almost four years before I could even say anything good at all about the entire state, let alone the city itself.

What I have learned about many other things is that anger often covers up really deep pain, at least for me. And I finally figured out that my intense anger at my hometown was actually a deep hurt about how powerless I felt when we were there. I felt constant, crushing disappointment about how we could never seem to get ahead.

We were wasting the most productive years of our careers, languishing in a place where you were likely to eventually get laid off, no matter how good you were at your job. You might be unemployed for nearly a year, like my husband was once. If you lose one job, chances are good that your next one will pay a lot less and be a step down.

Good luck getting promoted anywhere because every other employee has also worked there forever and is at least as qualified as you, and they’re waiting for the same non-existent better job to come available. Employers always had the upper hand and there was nothing you could do about it, because where else would you go?

I went back to finish my university degree but it didn’t matter that I graduated magna cum laude, because it took seven months after graduation just to get hired part-time at Starbucks. Having previously lived in a place with a better economy, it was just brutal and painful to keep getting kicked in the teeth, over and over, no matter what we tried to do to better ourselves.

But now I’m safe, far enough away in time and circumstances that I’m not mad anymore. I’m actually really sad, like can’t stop crying sad. Nothing was like I wanted it to be, from my extended family relationships to my house that I couldn’t afford to fix after a basement flood to the utter devastation to our careers. And no matter what we tried to fix it, nothing ever worked except leaving.

If that’s not sad, I don’t know what is.

So on the one hand, going home will be a much-desired chance to visit my parents again. I love them as people. I got so many great traits and qualities from them. It will be healing to go see people who know all about me and still love me anyway. And to let them know how much I love them, too.

But on the other hand, I realize that it will also likely be a combination ghost tour and farewell. I will give all my grudges and pain a proper burial. I think the whole trip is going to be pretty emotional.

After I talked to my dad, my husband and I went to Target together. I told him I’ve heard that they’ve built a lot of new things in our old hometown, and I asked him what we would do if there were enough good new things that it made me want to live there again, because that’s one of my biggest fears. His kind but practical answer was that he still wouldn’t be able to get a job there, while he’s constantly being contacted by recruiters here. There’s no question that this is where he needs to be.

And I’ve begun to realize in the past year or so that I’m also okay if his career eventually takes him somewhere else. I actually hope it does because I’ve finally broken both my strong aversion to my home and equally strong attachment to being here. My husband and my children are my true home, not any geographical place. We had to be here now; I have absolutely no doubt about that.

Maybe my middle son will succeed in his goal of moving out of the U.S. and building a bridge for us to follow. Maybe my husband will get a job offer or transfer somewhere else that’s not even on our radar now, but we’ll clearly recognize it as right. Or we could end up staying here. All I know is that I am open to seeing where God leads me and I will follow, just as I did when I came down here 4.5 years ago.

As I break all these chains that have held me back for so many years, I suddenly feel so free. There’s an element of sadness to that newfound freedom too, the same way there’s a little bit of pain when you peel off a scab to reveal healing skin underneath.

I’m finally ready to go home and make peace, once and for all.

Trying to hang on without giving up

Today I finally finished and submitted the lengthy disability questionnaires for social security about how my health has affected both my working ability and overall quality of life.

I have to say it was probably one of the bleakest things I have ever done.

Compared to the last time I applied two years ago (which I canceled before a ruling could be made because I believed I was still well enough to work), both the function and quality of life report this time were so much worse.

That in itself is scary, that I’m so much worse than I was just two years ago. I want to say I’m a fighter, that I won’t let this take me down, but what if I don’t have a choice? People say I’ll be “cured” if I try this strict diet or that other (completely opposite) strict diet and honestly, survival alone is hard enough already. Those kinds of changes seem overwhelming to make even if I could decide which one was right.

I am adamant that I don’t want my illness to define me or become my identity. I would never enumerate my list of various health conditions on all my social media profiles; I think that’s seeking attention and pity more than “raising awareness.”

What good does raising awareness do, anyway? Is there anyone who saw something like “RA sufferer” on someone’s profile and a list of surgeries they’d had and suddenly felt inclined to raise money for a cure? I’m not going to hide my illnesses either because I’m not ashamed. It just doesn’t seem like the most important thing I want people to know about me. I don’t want to be defined by my suffering.

I also absolutely cannot be around other people who frequently complain about their health and encourage me to do the same because it’s too contagious, too bleak. If my health is already like a slowly rising pool of poison water around my ankles, complaining about it whips that pool into a tidal wave that will drown me.

At the same time, filling out those disability forms made me realize in black and white just how limited my world has become. I’m not sure if that’s more due to depression than the MS itself because depression and MS are so strongly linked. My life is mostly just sleeping, doing small things for the kids and whatever housework I’m able, and then trying to distract myself until it’s time to sleep again.

But the ironic thing is that the friendship-ending blowout with my friend actually came about because I canceled plans she created to try to cheer me up.

When you’re depressed, just getting out of bed takes enormous effort some days. The last thing I need is to be yelled at for misunderstanding plans or not being up to them. (Considering that my MS also makes me misunderstand or forget a lot of stuff, the odds that I’m going to forget details or mess up are high, which I also put on my disability forms. Imagine trying to learn a new job when you now have about 10% of a normal person’s capacity to make and recall memories!)

It also makes me just want to hide from everyone when I’m called boring because of my interests. Because of both my illness and my depression, I’m usually sleeping in the morning and it’s hard when people make me feel bad about that. I already feel like enough of a freak for not being into pop culture or current movies or celebrities or anything popular; I’m a nerd and always have been. The last thing I need from a supposed friend is to be told my nerdiness is too boring or uninteresting.

Depression has erased huge parts of my memory and I never really had a youth of going to a lot of concerts or being into pop culture back then either, so I can’t even engage in talk about nostalgia for the past. I feel like I am too weird and out of touch with normal people to even carry on small talk.

The only people who really feel safe to me right now are those in my family I live with, and a few other calm friends I’ve had for years who understand depression but don’t see often. Being depressed means I find it exhausting just to exist sometimes, let alone be around someone who’s always “on” and theatrical and loud.

Nothing wrong with those traits in general. They’re just a lot for me to handle on a good day because I’m introverted and quiet and easily prone to sensory overload. They’re completely overwhelming when I’m depressed, which makes them sound like they’re being broadcast through amplifiers at a rock show.

And though I’ve battled depression off and on for all of my life and it has limited me in countless ways, filing for disability feels like the Big Boss of the fight (to use video game terminology.) It’s so much larger and more powerful than I ever could have imagined. I don’t even know how to defeat it.

I do know that I need gentle, supportive people around me, ones who will take me as I am and love me through this. I can’t take the risk of being attacked when I’m already so vulnerable.

I probably need people who will reach out to me and keep reaching out to me even though I may push them away. But between everyone having busy lives of their own and the fact that I’ve pushed many people away as a result of my depression, I can’t realistically expect anyone to have the time or inclination to let me know I’m worth the effort.

And I get it that not everyone has enough empathy or extra energy to even want to try to handle this, let alone try different ways or more than once. The things that cheer me up aren’t the same things that cheer up most people. I’m probably being a little selfish right now, but this really is the best I can do at the moment.

Things aren’t so bleak that I think my husband and kids are the only ones who love me. But I would rather be limited to just the people who feel safe than go through being attacked again. And I know that ultimately it’s my job to fix myself.

But the depression that came along with filing for disability was massive and unexpected. I try to believe that there’s going to be a better day coming, but right now I have nothing to look forward to. I had so many things I wanted to do with my life that now just aren’t ever going to happen. I once had a pretty formidable intellect and now I can’t remember instructions with more than a couple steps.

I’m just putting one foot in front of the other until hopefully, I’ll reach a point where this hopelessness has passed.

What am I going to do with my life? Will I find enough joy in a spiritual practice and maybe be able to get a part-time job at a library once the kids are grown and don’t need transportation? I guess that’s the hope that I’m clinging to, but that’s still realistically a couple years in the future.

How will I hang on if things continue being this bleak until then? My husband has to work a second job because of me just so we can scrape by, which both leaves me lonelier and puts an unfair burden on him. This is not what I want at all.

What if I’m one of those people who take years to get approved for disability? I feel so useless. There’s nothing much going on in my life. I have very little in the future that excites me. Until I get disability, I will have even less.

But the disability filing and seeing exactly how small and limited my world has gotten just feels like I ran into the biggest roadblock of my life. I barely had enough energy to get through regular life before this. Now trying to go around the roadblock feels so insurmountable that all I can do is sit down and wait to come up with a new strategy to get past it.

Until then, I really feel stuck and useless and pathetic. I feel like my life as I knew it just ended and I can’t seem to come to terms with that yet.

Sometimes it’s not all my fault

You know what? I didn’t just grow apart from my former friend. I was trying to put a nice spin on it and to behave with more class than she did. I always look at my own role in conflicts and at what I could have done differently. But I have to stop accepting all the blame so readily, too.

I hoped it would be different this time. But seeing her in person after 16 years made me realize that there were many reasons we weren’t on speaking terms when I left this area 16 years ago either.

I knew better than to trust her based on a lot of past history. I let my guard down again around someone who repeatedly proved herself to be unsafe and unhealthy for me. She knew my vulnerabilities and of course, she used them all against me.

I reread all the messages we exchanged before and during the blowup and it’s pretty clear that while I mentioned a few things I was upset about, I did so calmly, owned them as my own issues to deal with and I did not attack her. The worst thing I called her was snobby. (And since her reaction when she borrowed my diamond earrings for her recent wedding was “oh they’re so tiny!” I think the snob classification definitely still fits.)

We’ve had a long and contentious history and I’ve never had that kind of relationship with anyone else before. Anyone in my life who ever met her, from my husband to my brother-in-law, disliked her from the first meeting. In fact, my brother-in-law just mentioned her a couple years ago, like “whatever happened to…” because her rude and obnoxious attack on him for eating meat at my oldest child’s birthday party made such a memorably negative impression.

Keep in mind that neither my mom nor the maid of honor from my wedding automatically take my side when I talk about conflicts with others. And over the years, when I would I talk to them about the latest drama with this friend, they would always encourage me to stay away from her and not go back. They would ask me why I put up with someone so destructive in my life. And I honestly don’t know why I did for so long.

But ever since I moved back here, things seemed to get rapidly worse. There’s no point to rehashing any of the finer points because my goal is not to draw anyone else into the drama. I just realized that seeing her in person was actually much worse and more unpleasant than the years of communicating strictly by email.

In our last argument, by text, we agreed to take a break from the friendship. Naively, I thought it was over. I didn’t send her any more messages.

The next day, she unleashed a torrent of abuse on me, swearing at me and attacking every aspect of my character. I ignored all the messages and tried to take the high road. I didn’t even read most of the messages she sent at that time. I just skimmed and saw things like her calling me “high and mighty bitch” and that I was a “hateful and judgy Christian”, so I figured I got the gist. I sent a couple brief replies saying basically “yeah, I think this is over and I hope you get help” and she still kept sending more abusive messages.

I wrote a blog post after that, saying I was trying to be calm and to move on in a more positive direction and that we just grew apart. In response to my effort to take the high road, she sent yet another message saying I was “so fake” and “in denial” for not putting all my problems out there and lobbed a few more personal insults at me. I didn’t respond to it at all.

Trying to put a more positive spin on a difficult situation is a healthy thing, not a form of denial or fakery. Saying you grew apart from someone is a lot more mature than putting them on blast on social media.

Yet she managed to convince her acquaintances that I was the one who attacked her in all this. She’s still playing the victim role.

It’s so hard to be on the receiving end of this, to know that I can’t clear my name. But she is completely unable to see reality because she is so intent on seeing herself as the victim.

To be clear, I’m not saying that “seeing reality” means that I’m the victim either. We both said some things that weren’t helpful or kind. I think for either of us to paint ourselves as the victim is both ridiculous and inaccurate. Even if one person is attacking the other, it still takes two people to fight.

I’m not going into detail trashing her to my friends the way she did to me. Nobody’s reading this anyway so I’m just trying to process some of the high-level points.

Trying to turn people against the person you’re mad at when they don’t even know them, just to make yourself feel more justified, is manipulative and kinda sad. Especially because it’s seeking sympathy for what is essentially a lie.

I’m still trying to take the high road and saying we just shouldn’t be friends anymore. That the friendship was realistically over many years ago. I’ll even say that I have my own issues to work on, just as she does.

But I am not accepting 100 percent of the blame anymore. That’s not honest or fair and I finally at least have enough self-respect to walk away from her. She is essentially a high school mean girl who never outgrew it.

I’m also dealing with the fact that my MS has turned progressive and I’m not getting better, and the last thing I need in my life is that kind of drama. It takes real effort to stay positive with this illness, and I can’t risk being around someone who consistently makes me feel worse. I can’t be friends with someone who likes to talk about our illnesses all the time because that makes it harder to stay well.

My other friendships are calm. We don’t spend all our time discussing every problem we face. And I need that calmness so I can try to stay healthy.

But make no mistake: it was completely my fault that I went back for more. Some people don’t change and I had every reason to know better. Some people create too much drama and it’s not only okay but good to walk away. Sometimes the past just needs to stay in the past.

But home is nowhere

I’ve been back in Texas for 4.5 years and for the first time in all those years, I’ve finally started to miss my home in Michigan. And I’m not sure what’s up with that.

Maybe it’s because I really miss my parents and I haven’t seen them once in that whole time. I don’t have unrealistic expectations that I’d see them any more often if we moved back than we did when I lived there before. But it would be really nice to spend some time with them and get a good long hug from both of them. It really has been way too long.

Maybe it’s because I’m always most nostalgic for Michigan in the fall, when it was actually pretty there. Sometimes it was a little too cold, but I have such nostalgia for fall there and everything that went with it.

Maybe along with the nostalgia for a Michigan autumn, I’m also feeling wistful about my kids growing up so fast and fondly remembering times when they were little. They’re going to be 16, 18 and 21 on their next birthdays–not so little anymore.

I’m really proud that they’re all fine young men and they all have such great values. They’re hardworking (some of them more than others, though I suspect that will work itself out over time) and responsible and compassionate, just like I wanted them to be.

But that also means that my goal of raising them to be independent is likely to succeed in the long run (with a few bumps along the way expected, of course.) As a parent, it was my job to make them independent and capable of caring for themselves. But if they’re independent, that means they inherently don’t need me as much anymore and that’s a bit lonely.

Maybe I’m nostalgic for Michigan because the heat here this year damn near did me in. It caused me to suffer such terrible MS symptoms as a result. It was never like this before and I haven’t recovered yet.

I know I don’t want to move back to Michigan. If I ever did for any reason, it would have to be to one of the bigger cities. It couldn’t be on the blighted, rundown, depressing eastern central part of the state like where I’m from. Keep me out of Flint, Saginaw, Bay City, even Midland (the latter of which is prettier than the other towns but is too creepily Stepford.)

But Traverse City would be a nice vacation spot. Maybe Grand Rapids or Ann Arbor would be a nice place to live, especially if we had a bit more money. Those places are really nice if you’re not super broke.

Not that I’m thinking of moving. I just miss home.

I’m learning to sit with that feeling because I think it’s an important lesson for me to master. When I lived here the first time, I moved back home any time I missed it — only to realize it was a mistake and ending up back here within less than six months. I think we made that back-and-forth move at least three times in the 90s.

Even the last time we moved back was a mistake and we recognized it as such immediately, but it wasn’t as easy to push the “undo” button once we had kids and I was unexpectedly pregnant with our third.

We need to be here now because there are a ton of job opportunities for my husband. And I love having three locations of nearly every chain store or restaurant within less than five miles. I’m spoiled for the amenities that come with living in the suburbs of a big city. I’m grateful not to have to drive 20 miles to the grocery store anymore.

I love it here when I can wear sandals in late February. To the same degree that relentless heat aggravates my cognitive symptoms of MS, the relentless cold in Michigan causes me intense pain and muscle spasms for 6-8 months out of the year.

I’ve also realized that my personality is much more in line with earthy, no-nonsense midwesterners than with the flashy attitudes and excessive focus on appearance of stereotypical city Texan women. I certainly have friends here who are native Texans who are down-to-earth and not superficial, but the stereotype does come from somewhere, too.

I’d rather spend an afternoon with the windows open, canning pickles from cucumbers that I grew in my garden, than be stuck in air conditioning at a mall filled with stuff I don’t want and can’t afford. I’m more working-class Catholic than old-money Baptist (to continue with the wild generalizations.)

Or maybe I’ve just finally come full circle. I don’t hate where I’m from anymore but where I am now isn’t the promised land either.

I could honestly probably be okay with either staying here forever or going to some other city in Michigan. I don’t have a strong attachment or aversion to either one and I know that I can be okay pretty much anywhere. (Except for maybe my hometown area, because it’s so rundown and has so many bad memories.)

I’d like to think that leaves me open to some new adventure someday of getting to live in a completely new place. I’m kinda hopeful that this isn’t going to be my final stop.

Don’t place your hope in things that don’t last

So my resolution to not focus on my health problems wasn’t something I could sustain. I had a few really peaceful days, which were amazing and beautiful. That’s how I want to train my brain to become every day.

It’s hard not to feel like a failure because I couldn’t maintain it.

Even though the weather has cooled down to a point where it’s no longer having as major of an effect on my health, I’ve had a lot of stress since then. I’m getting better about managing minor stress, but extreme stress is almost as bad for my health as the extreme heat.

I knew we needed to fix both my car and my husband’s car, which was stressful in itself. (My adult son’s car also needs repairs, but he has been so good about saving money that he doesn’t need our help with that.)

But then we got the estimate for what it will cost to fix my husband’s car. It’s not even the transmission or the engine, and it’s still the highest estimate for any car repair ever in our 24 years of marriage. There’s so much wrong with the car. It felt like a punch to the gut and I’m still reeling.

If we had more resources, I would ditch the car completely because the value of the car is not much more than the repairs. It’s an 11-year-old GM SUV that gets poor gas mileage and everything costs more to repair because it’s an SUV. There’s was a point in our lives where we would have recognized this as a bad item to own and gotten something else. But we don’t have those options anymore and we’re stuck with it.

My husband fixed one of the things himself so that will save a little money. I’m so grateful that he tries to figure these things out, because he knows nothing about fixing cars and hates doing the work. And the poor guy is already working two jobs as it is.

We’ll find a way to borrow the money and just get further behind, but I’m just so tired of always falling further behind.

I can’t help but blame my health for this. If I were working full time like I tried to, we would already have money in savings that would have at least covered part of the repairs. There wouldn’t be so heavy a burden on my husband if I could work. We would actually be getting ahead because I’d be contributing, which was the whole point of moving down here.

I also placed way too much importance on a stupid concert I want to go to in a couple weeks. Normally, missing out on stuff I’d like to do is no big deal; it’s the norm. It doesn’t get me down because I don’t expect to go.

But from the time this concert was announced, I stated my intention to go — specifically as a “fuck you” to my illness and that I wasn’t going to let it stop me.

I have gone without too many fun things in my adult life because finances didn’t allow it, and I decided that I had to make it a priority to do things now while I still could. I’m not sure how long I’ll be able to do those things because my health is rapidly getting a lot worse.

Filing for disability was the hardest thing I’ve ever done. It’s hard to convince myself that it doesn’t mean my life is over. And since that concert was announced after I filed for disability, it carried so much more weight than any other concert has.

It represented my tiny bit of hope that my life would not be over because of my disability, because I would prioritize doing the things that made me happiest for as long as I was physically able.

And of course, now there’s no money for the tickets. I think my husband thinks I’m just being immature about it and throwing a tantrum to get my way. What I can’t seem to convince him of is that I placed way too much importance on attending this concert because of what it means about my hope about my health and my future.

It’s not about the stupid concert, it’s about my fear that I already passed the window of what’s possible in my life. It’s about my fear that the fun part of my life is already over.

I’m usually pretty able to get by without needing to go out and do stuff. I can be pretty happy if I can only spend $20 bucks or so in a week.

But I’m finally confronting what a future on disability is going to mean and it’s a lot harder than I thought it would be. And I’m sure my husband is intensely feeling that in a different way. If it’s hard for me to be so helpless, it’s got to be harder on him having to carry me.

I’ll bounce back. I always do to some degree. It’s much easier to keep a healthier perspective when I don’t have negative influences in my life and I’ve gotten rid of them.

In some ways, I’m still doing okay overall at holding it together. My 17-year-old found out yesterday that I usually have so much pain that I can barely walk. I’m proud that I managed to hide that from him so well for so long and that all he could see about my MS is how it affects my brain.

So I’ll somehow find a way to adjust to the circumstances. I always do. Things are probably not as bad as they seem.

I was just already beating myself a lot over the fact that I couldn’t keep working full-time because we really needed my income, and these circumstances have made me only beat myself up more. And I’ve learned a valuable lesson not to ever pin any of my hope on things I can’t usually afford like going to concerts.

I have to find different reasons to look forward to my future. Preferably that don’t require leaving my house or spending money because I may not get to do much of that. I’m just not sure yet what those things will be. Probably some variation on just being thankful for what I already have instead of wanting more.