Have mercy

Right now I feel like I’m very much at the mercy of both the medical community and fate itself.

My husband starts his new three-year regimen of chemo tomorrow and I am full of worries. Since this is a pill form of the same drug he took before in IV form, I don’t know if he’ll respond the same way. He responded pretty well to the IV form, all things considered. The pill form is supposed to be easier to tolerate, but I also know that it has some different side effects. And the damage and risk to your body increases the longer you take it…and so does the possibility that the drug will stop working because you become resistant to it.

But I’m worrying about a million little what-ifs. What if he’s one of the ones with a fatal reaction to the drug?

What if I’ll be rushing him to the emergency room in the next few days for a heart attack (a not-uncommon side effect)?

What if the fact that the doctor hasn’t ordered anti-nausea meds yet means that he won’t and my husband will be incredibly sick (and then may possibly have to be hospitalized for that?)

What if the fact that we can’t afford our $4,500 copay (not a typo) for tomorrow’s treatment means that he can’t get the treatment at all?

What if the fact that he’s currently in a state of no evidence of disease means he could go on and be well for a while, rather than going through three years of chemo? Why can’t he spare his body from becoming resistant to this chemo now and just wait for the likely inevitable recurrence and treat that when it comes back?

Even if the doctor says there’s a 70-80 percent chance of recurrence, he didn’t say when because nobody can predict that. My husband could be well for the next couple years without the continuous chemo.

What if he’s not able to work anymore and we can’t afford to keep living where we are and have to move while he’s weaker and so am I?

What if he won’t make it through these three years at all–there’s no guarantee that he will–and this marks the beginning of a miserable end?

What if what if what if. I can what-if myself into paralysis and nearly have. But I’ve noticed that this is a state I’ve frequently been in regarding my MS as well. If everything seems fine and normal now, why does either of us have to use these risky sledgehammer drugs to prevent some future worsening that we don’t even know for sure is coming? Denial may be naive but at least it’s more comforting.

Financial worries also abound. We’re already starting to pay on our back taxes from my freelancing and we’re having to help our daughter cover her car insurance, so I don’t know how we’re supposed to come up with an extra $9,000 for our annual out-of-pocket maximum healthcare expenses. My income got cut a little as it is. Then if he ends up starting that new job (which is up in the air but still in play), we’ll have to start over with all new copays again.

My worries about MS are in the back of my mind, too, though MS seems so trivial compared to cancer. Like it’s worrying about a hangnail in comparison. I tentatively decided maybe I will go on a stronger MS med if my current one doesn’t work out. (You’re not mistaken if this seems like a course reversal; it is and it’s largely motivated by my fear of the unknown.)

But then I read bloggers who went for the most aggressive treatments and still progressed to needing a wheelchair, some even to death, by their mid 50s. The uncertainties make me more afraid.

Things have been so normal and so good in the past two months since he’s been off chemo. It almost feels like our old life again. In many ways, it’s been better than our old normal because we have that whole sense of “life is precious” urgency.

I don’t like that it has to change, that I have to step out of comfy denial land back into the world of the fearsome unknown where I have to be strong and brave. I just want to stay in this calm, normal zone for a little bit longer. I’m not ready for whatever’s next.

Evaluating MS meds (part two, sort of)

I’ll just state from the outset that I know I have some readers who are taking MS meds and they don’t question their decision. I greatly envy their self-assuredness in doing so and my intention is not to convince them otherwise. Rather, I’m exploring this and maybe trying to convince myself of the evidence for what I already believe deep down.

As I mentioned yesterday, my current med doesn’t seem to be working out, though I’m going to ride it out for longer and see if I adjust. The only side effect I won’t be able to live with is increased depression and anxiety, which is such a likely side effect that the drug should only be used with caution in those with an existing history of depression. But considering that my husband starts a new regimen of chemo later this week that he’s supposed to be on for three years, I have a lot of reasons to feel anxious and depressed right now.

At the same time, all my other med choices have so many risks that I’m unwilling or unable to accept that I’ve tentatively decided that if this one doesn’t work, I’m probably done with MS meds. Not because I have more faith in a natural route, just that I’d rather take my chances with the disease than with the meds. So I’ve been doing some research to try to find out what’s likely to happen if I don’t take meds.

First off, the odds are on my side. About 75 percent of people with MS never need a wheelchair. The article does recommend taking meds, of course, as most medical sources do. But my EDSS score is pretty low, which measures my degree of disability. I need to ask my neurologist at my next visit for the exact score but I’d put myself at a 2.5.

I’m progressing slowly, as I think I’ve only progressed by .5 since I was diagnosed seven years ago (all but 8 months of which I was unmedicated.) From my first symptoms when I was still undiagnosed, I estimate that I’ve had MS for almost 20 years. I also don’t have frequent relapses. Between the length of time I believe I’ve had it and not having frequent relapses, being secondary progressive is more likely and drugs don’t help secondary progressive as much anyway.

If I’ve had MS for 20 years, the large number of lesions I have makes sense. And being at a 2.5 EDSS score means that if I continue progressing at a similar rate, I could have another 20 years until I need to permanently walk with a cane.

The thing that’s scary about MS which is the strongest selling point for the meds is that the disease course is so unknown. I’ve spent hours researching medical journals in order to see if there’s any way to predict outcomes…and there really isn’t.

If you take the drugs and you get worse, you don’t know if you would have gotten even worse without them. If you don’t take the drugs and you get worse, you don’t know if you could’ve avoided getting worse if you had taken them.

Everyone with MS (including me) is afraid of becoming like Annette Funicello, completely incapable of caring for themselves. Of course, it’s also to be noted that she had a highly active and progressive form of the disease, which I do not, and she also had access to all the best medical treatments. And in a weird way, she kind of proves my point: if you’re going to get that bad, you’re going to get that bad, even if you take meds.

The FB groups I’m part of are full of people taking meds whose disability is still progressing even while on the meds – even though their MRIs are often good, so the treatment is considered successful. That makes me feel like MRIs are not the most accurate way to measure MS. In truth, I don’t think the medical community understands what causes MS and most of them will admit that. The meds are often a shot in the dark, no pun intended.

While trying to rest last night, I happened to wonder about the cost effectiveness of the MS drugs (which run up to $80,000 a year or more) compared to the number of relapses they prevent. And it turns out there are studies on that, the results of which aren’t encouraging. The drug I’m on right now, for example, costs the most in terms of the amount of benefit you get from it, called “quality of life years”: over $355,000 for one quality of life year. By comparison, the average relapse costs $9,000 to treat, according to the same source.

Of course, when you’re dealing with an unpredictable illness that has the potential to be completely debilitating, even if those really bad cases are the significant minority, it can’t come down to a cost decision. Those who are doing well on meds shouldn’t be forced off of them because of a low cost/benefit ratio.

What I’m left wondering for myself, though, is what the benefits of the drugs actually are. As far as I know, they only hope to result in better MRI results and slower progression of disability. But as mentioned above, MRIs seem irrelevant to how well you’re actually doing and I don’t think they’re a good measure of anything. My MRIs are terrible and show a ton of inactive brain lesions but my disease is not aggressive. And you can still have disability progression even on the meds and many people do. I just don’t think anyone really understands how this disease works.

But what it increasingly comes down to for me is that the drugs seem to offer so little proven benefit compared to their potential risks. If they could cure me or promise that I’d never get worse if I take them, I would find that a more compelling reason to take the potential risks.

Vent ahead: MS drugs suck

So I’m still on the Rebif, one of the oldest and safest disease-modifying drugs for MS. It’s injectable, but other than one time, I haven’t had any trouble with injecting myself like I thought I would.

Instead, it’s everything else. Since I went up to the 22 mcg dose, I have side effects all over the place. Chest pain, trouble breathing, vertigo, tinnitus, constant sneezing (what the hell? This is just a minor annoyance but it’s weird.) Migraine headaches, nausea, alternating between freezing and sweating, sore gums and mouth sores, all-over body aches.

“They” say these side effects are normal and should go away within a few months. I could live with them for a few months, though the chest pain and trouble breathing really freak me out a lot.

What I don’t think I can stick with are the mood changes. They started almost immediately after I went up to 22 mcg (and I’m supposed to go up to 44 mcg from here!) I am so anxious about everything. Maybe I could say the anxiety is due to being worried about my husband starting three years of chemo this week. But the truth is that I didn’t even feel this much anxiety while he was in the hospital last year getting diagnosed with cancer.

My depression also seems to be worse, which is a known side effect of the drug. I’ve started assuming my husband’s going to die. I don’t care if I see anyone. I just want to sleep all day. This is really frustrating because I had finally found a combo of meds that effectively treated my anxiety and depression and now they’re not working at all anymore.

And oh dear god, the irritation. (When was the last time I ever wrote a post titled “vent ahead”? I’m pretty sure never, even if I wrote some vent-y posts.) My husband was a half hour late getting home yesterday from the trans support group meeting — I couldn’t bring myself to go to that OR grocery shopping with him — and I was so pissed that he was late and didn’t even text to let me know he would be late. It took every ounce of my self-control to keep my irritation from making me snap at him. This is not like me. At one time it was, but hasn’t been for many years.

Honestly, I know it’s due to the drug and I want to stop it right away. My symptoms coincide too perfectly with when I increased my dosage. I’m sure my neurologist would understand why but then he’d want me to get on something else. And honestly I don’t want to get on anything else. Do I choose between the drug with the breast cancer risk or the heart risk? The one with the liver damage risk or the one(s) with the risk of the deadly brain infection?

Pretty much all the other drugs also wipe out your immune system so you’re more at risk of getting infections, which is itself a huge risk I can’t take, given that my husband’s going to be on chemo for the next three years. I don’t want to put him at risk of possible death because I got sick from a stupid drug to “maybe” prevent MS relapses.

I do still believe in science and I am still taking my disease seriously. But I also feel like fuck this. It seems like I get every “less common” side effect to every med. This particular drug will only reduce my relapses by 30 percent anyway. There are other drugs that are more effective but they’re also riskier. I have no good choices for meds that aren’t scarier than the disease itself. I feel so much worse now than I ever have from my MS.

I’m siding with science

In the ongoing saga of my battle with MS and what to do about medication, I think I’ve decided once and for all to cast my lot with science.

Multiple sclerosis is a confusing and scary disease, even to researchers. They still don’t really know what causes it, let alone how to cure it. They do their best to come up with treatments that try to modify the disease to prevent relapses and disability progression.

Do I understand how the medications work? Not really. But that doesn’t mean they have no value. The fact that I don’t understand how they work is a testament to how much education the researchers have which I lack.

The reason I’ve decided to stick with science is because the unknowns of the disease are too terrifying. On the one hand, I’ve been telling myself that I’ll never get worse because my disease is stable and I haven’t had a relapse in 2.5 years.

But on the other hand, I also know that I can’t count on it staying that way. A relapse or progression in my level of disability could happen at any time. My last relapse in August 2017 wasn’t anything I saw coming and it was terrifying. I couldn’t tell if I was having a stroke or not. And that relapse left me with damage to the right side of my body, from which I’ve never fully recovered.

Part of my decision is pragmatic. Realistically, I’m going to lose my husband at some point in the next decade. It could even be much sooner than that; we have no way of knowing. But if and when his health declines, that’s obviously going to be a big source of stress for me–and stress is one of the top triggers for an MS relapse.

The other practical matter is that I have to do everything I can to try to avoid getting worse. If he’s not going to be around to take care of me, I don’t want to lose my sight, be wheelchair-bound, or be unable to drive. Those things would be terrifying enough in themselves, but even more so if I’m completely alone.

But my decision isn’t based entirely on fear, either. It’s that I’ve realized that the natural approach seems simple-minded and relying too much on what is essentially denial. Maybe I just don’t believe enough in the power of diet and natural supplements. There’s not enough research to support them as exclusive treatments. What I do know is that when I was on the Tecfidera, I was doing well enough to exercise frequently, and now I’m not. Being able to exercise regularly will hopefully help me keep my mobility. I miss it.

Another thing that I find disturbing about those who advocate the natural approach is that they seem to reject science in other aspects, too. Most are anti-vaccination, an issue I’ve come to firmly believe in (with a few exceptions; I still don’t think newborns need the hepatitis B vaccine yet and I think natural immunity to chickenpox lasts longer than from the vaccine.) They also promote chiropractic care a lot, which I find sketchy, are anti-fluoride, and talk a lot about avoiding “toxins.”

There’s also this prevalent idea among them that there’s a conspiracy by the medical community to push drugs on people with MS and that it’s all solely profit-based. I’ve fallen for that line of thinking a lot. But what it all comes down to is that even if the MS drugs are profitable and don’t provide a cure, they’re still the best that science can come up with so far.

Are a healthy diet and regular exercise important? Yes, not just for everyone, but for people with MS in particular. I do the best I can but I know that I do better when I’m on effective medicine.

In short, this disease is too serious to take my chances. I finally get that. Even if there’s no cure, I don’t want to wind up completely disabled and wish that I had taken the meds because I might’ve been able to stop it. I don’t want to have to wonder. Maybe there’s even hope that something could get me to not need to be on disability anymore. I’d like to think of being capable of supporting myself when my husband’s gone.

MS and medication

I’ve been doing pretty well on my MS medication. If you’ll remember, I was pretty freaked out about starting medication.

Now my white blood cells have tanked and I’m back to freaking out. My WBCs keep dropping and I’m officially in the zone that makes me immunocompromised now. For once, my relative isolation is a good thing, because I am at serious risk of catching anything that’s going around and I wouldn’t be able to fight it off.

My neurologist is handling it appropriately with having me do blood tests every two weeks. And I’ve researched the usual protocol regarding the drug and I would have to see my WBCs drop by half again for most doctors to take me off of it (though I’m not sure when my neurologist would.)

I’m also high positive for the JC virus, which is something many people have and don’t know it. But when your immunity is low, you’re more likely to get this potentially deadly re-activation of the virus called PML. I know, I’ve written about this before.

But all this has me thinking about taking my chances and going unmedicated again. I’ve looked up other MS medications I could switch to and all of them have potentially scary side effects, many of which carry the same risk of lowering WBCs and activating PML.

The thing is that I know my neurologist is not going to be okay with me deciding to go unmedicated. I’m not sure if my husband would be, either. But having gotten a relatively common but what is to me a very scary side effect from the first med I tried makes me very wary to try another.

Spiraling

I haven’t known what to write here as often lately. In truth, I’m kinda spiraling, having trouble keeping my thoughts from running away from me.

I’ve done a lot of supremely unhelpful things related to what I’ll do once my husband dies. Given the fact that I don’t even know when that will be, it seems premature to be worrying about it now. But it’s all I can think about anymore.

I’ve looked up the cost of one-bedroom apartments vs. the cost of renting another house. Given that, again, I have no idea when it will be, I don’t know if any of the kids will still be living at home. I also have no idea what the housing market will be like at that unknown future date. I don’t even know if I want to stay in this area and have started researching other places.

I’ve realized that without my husband to help, I’ll definitely have to hire movers. And with my MS being what it is, I’ll probably have to hire a professional to come in and do a deep-clean before I move out.

This is all incredibly premature and completely pointless. I don’t want to have to figure out how to live without him so focusing on the things I can control makes the things I can’t control feel a little less overwhelming.

I don’t know what is the point of thinking about logistics now, when I don’t even have a date yet. I am still deeply hoping that he’ll be like the person he recently ran into, who also had the same type of cancer with more metastases and was treated at the same place and just celebrated I think the second year free of cancer.

That’s the outcome I want. His goals are to make it to our youngest’s high school graduation, then his fiftieth birthday, then our 30-year anniversary. The latter is nearly five years out. If he makes it that long or even longer, that gives me a lot of time to save more money and prepare myself. I’ve recently read stories of people with the same type and stage of cancer who lived for more than 10 years after diagnosis.

Not that I will ever be able to prepare myself. But this is a horrible way to live, in this perpetual state of feeling like there’s an axe hanging over my head. I have to snap out of it because I don’t want this to be what I remember of our time together.

I was really hoping therapy would help me with these fears and so far my first therapist was a bad fit. I see the new one in a little over a week and I really hope she’ll be more compassionate and helpful. My other therapist seemed to (probably unintentionally) make my fears worse by focusing solely on finances. What I really need help with is managing my fears so that I don’t ruin today.

I realize that there’s a greater lesson to learn from this whole spouse-with-stage IV-cancer experience, and that’s that I need to let go of fearfulness and control and live in the moment. I’ve always struggled with that but even more so now. It’s like the universe decided I needed the master class in learning how to be grounded in the present moment. A lot of times, I really don’t think I’m ready for the lesson.

Ultimately what it comes down to is that I have to continue learning how to put myself and my own needs aside to be of greater service in general and specifically of service to my husband. It’s a very valuable lesson and one I needed to learn. I just hope I’ll be able to get out of my own way and rise to the occasion.

Trading efficiency for anxiety

So a couple of weeks ago, my neurologist prescribed a medication for me that was intended to help me fight fatigue.

To my surprise, it actually works. I don’t have to take as many naps as I once did. I still don’t have the energy for hours-long shopping trips or the ability to work on my feet for long periods. I’m nowhere close to being able to do a retail job, for example.

But because I’m not taking naps as often, I’m getting a lot more done. I feel more productive. I can keep up with household tasks a bit better. It feels good that I can get more work done, although it’s not really helping me focus any better on my writing work and might actually be making that worse.

It’s like a very artificial energy that only applies to certain tasks. I’m more productive and spend more hours awake, but I can also tell that the tiredness is still there under the surface and I’m just masking it.

There’s a downside to all this, though, more even than the fact that I can tell I’m still tired underneath everything. The price of my increased energy is that it has also dramatically increased my anxiety.

The anxiety I feel is pretty intense, too; sometimes it feels like it’s choking me. I have typical panic attack symptoms fairly often, which weren’t a regular part of my anxiety before. I already had anxiety but I could manage it well enough that it rarely got above a 2 or 3. Now it’s turned up to 11.

So I’m left with the tough decision: do I want to give up the productivity if it makes the increased anxiety go away? Or do I accept having to take more naps and being less productive so that I can get relief from the intense anxiety?

Resolutions of two varieties

So the positive resolution is that finally, almost six years after my son got hit by a car, our lawsuits against the insurance companies have been settled without going to trial.

I’m glad it didn’t go to trial because I definitely don’t feel strong enough right now to relive that chapter of my life. The deposition (by now a couple years ago) was hard enough, reliving the details of the accident. I definitely have some PTSD from that.

Since my son and husband are co-plaintiffs now that my son is a legal adult, they’ll be allocating the money between them somehow, my son obviously getting the majority. We didn’t get as much as we hoped for but our share will likely be enough to pay off the balance on my car and pay off some small debts. My son will get a pretty good chunk of change, especially for an 18-year-old, but fortunately the only thing he wants to spend it on is a used car and wants to save the rest.

My youngest should get enough to pay for an inexpensive used car as well as compensation for witnessing the accident. So that long and painful chapter of our lives will soon be coming to an end.

Just in time for other battle: my husband’s cancer. For the second week in a row, his chemo treatment was canceled because his white blood cell count was too low. It actually dropped from last week. I guess that’s a testament to just how powerful the chemo was.

But even though I really don’t want to be brave–in fact, it’s the hardest thing I’ve ever done, even harder than when I moved down here alone–I have to make a resolution to be optimistic. I can’t be around any negativity at all.

It’s time to find that fighter spirit in me, the same one that healed my dermoid ovarian cyst weeks before surgery, using only visualization and chakra healing. That was almost 20 years ago and I haven’t used it again, but it’s time I find that reserve of strength that I know is still within me.

I’ve done a lot of things in my life that required great strength. From coming down here alone for almost four months to make a way for my husband and kids to pursuing big publications to getting through undergrad with honors with virtually no child care and three little children, I can be tough when I need to be.

My anxiety is coming back and it’s taking more effort to beat it. Every time my husband’s chemo gets canceled, it fills me with more fears. I’ve even started obsessing more about my own health and my future. I am torn between living in the moment, not borrowing trouble thinking about the what-ifs about the future, and planning how I’ll survive as a widow. It’s a terrifying rollercoaster ride to be on.

My best friend can’t leave me yet. If he does, I’ll cope somehow, but I just can’t let myself think about it in advance. I truly believe that it will all work out how it’s supposed to, whether or not that’s for the good. But the next few years are going to be a fight.

So it’s time to make and keep a resolution to be strong. To call on the strength that has gotten me through other times almost as challenging as this one. I’ve never really tried to cure my MS using my strength of mind, figuring it was my cross to bear. Yet maybe I can.

But for my husband and my desperate wish for his survival, I will summon that strength and be the best fighter and advocate for him that I can be.

The magical thinking associated with illness

The hardest thing about having multiple sclerosis and my husband having colon cancer is sometimes not actually what we’re experiencing, but that everyone else has this magical thinking about serious illness. And of course, they want to share their magical thinking with you.

I found this article that offered a lot of insight into how the randomness associated with cancer makes people feel a loss of control. In response to that loss of control, they turn to things they can control, namely diet. So you get a lot of advice from people who insist that the way to beat cancer (or MS, for that matter) is through diet. Note that these usually aren’t people who actually have cancer themselves, they’re just afraid of it.

It’s true that some dietary changes are scientifically proven to be associated with better outcomes for colon cancer in particular, like regular consumption of tree nuts and lower insulin levels.

But overall, cancer is still ultimately random in who it affects, who recovers from it, and who dies from it. That’s absolutely terrifying to realize that you don’t have control over something that is affecting you so profoundly.

Multiple sclerosis is much the same. On the one hand, it can rarely kill you (but secondary infections due to treatment itself can), but on the other hand, it also has no cure. There’s some anecdotal evidence that diet can affect it but there’s no scientific agreement about it.

I’m admittedly bitter about dietary changes being presented as a cure-all because I place a lot of blame on that for my husband’s cancer going undetected for so long. Part of that delay was a combination of stereotypical male avoidance of doctors and expensive health insurance.

But the surgical oncologist who did his surgery said it looked like he had years of undiagnosed ulcerative colitis that turned into cancer. And during all those years when he was suffering, he just kept giving up more and more foods, buying into documentary woo about dietary cures. I blame myself for bringing a lot of that documentary woo into our house, since I wrote for the natural health industry for so long.

He largely gave up drinking milk in his teens and was a vegetarian for many years. He spent the past 10 years or so gluten-free. He pretty infrequently ate processed meat. By all accounts, although he did not have a perfect diet, it was free of most of the things the woo-sayers tell you to give up. And he still got cancer anyway.

The randomness of cancer is scary. In fact, that’s the aspect I still find scariest, since I’m a recovering control freak with anxiety that I’m learning to manage.

I was reading cancer forums in hopes of finding support but instead they freaked me out. I read about one person whose husband died of colon cancer (itself scary to read) who ended up also being diagnosed with it herself, which then made me worry about myself as well. Just because I have MS doesn’t mean I won’t get cancer, too.

But MS is also random. Will I be one of the people who loses some mobility but otherwise lives an okay life? Will I someday find some gainful employment I can do? Or will I be one of the ones who ends up in a nursing home in my fifties?

People are just as bad about telling people with MS that diet is the cure as they are to people with cancer. Yet in one of the groups I follow for people with MS, a woman just yesterday said that she followed a vegan, sugar-free, gluten-free diet for years and her MS still got worse anyway.

The randomness of illness sucks. There’s no other way to put it. You can and should do things to try to be healthy. Healthy habits never hurt. But there’s no guarantee that they’ll prevent anything from getting worse. That’s how randomness works.

I’m really, really tired of woo peddlers saying that an alkaline diet or apricot seeds will cure cancer or a low-fat diet will cure MS (or alternately, a low-carb, high-fat diet…not like low-fat and high-fat are complete opposites or anything.)

The hardest part of being sick is how little control you have over it. But when people insist that you do have control over it if you just do the right things, that skirts the line awfully close to blaming people for being sick.

MS, summer, and the ability to work

Texas summer is full-on upon me again. I had a lot of hope that finally getting on a disease-modifying drug for my MS would mean that I could get through the summer without reacting so badly to the heat.

But nope, it appears that it’s having the exact same effect on me as last year. I need naps nearly every day. My total number of usable hours in the day is down to six, maybe 8? If I get a nap, I can extend my usable hours to as much as 12, but they’re not exactly all productive.

I’m immensely frustrated, as both an ambitious person by nature and a perfectionist, to be so limited.

I know, the things I’ve been learning in the work I’ve done on myself tell me to go easier on myself. To just do whatever I can and to not feel guilty about what goes undone. But that’s easier said than done.

I had a lot of freelance work the past few months and it recently got to the point where it seems to be slowing down a bit. On the one hand, I feel like I should try harder to get more work. My husband now has a car payment and we have cancer bills to pay off.

But on the other hand, I’m also like, thank God the work is slowing down. All I want to do is sleep. Even when I’m awake, I don’t have the physical or mental energy to do anything I want to do. I’ve had the supplies to make a batch of soap I think even before my husband’s cancer diagnosis and still haven’t done it. I wanted to make some cupcakes yesterday but was too tired.

Before the summer weather hit, I could physically handle 3-4 hours of being out of the house, as long as I had breaks to sit down and was indoors. Today, I went to the grocery store and to drop off Father’s Day cards in the mail, and I spent about 10 minutes trying to clean up my bedroom. And that was IT. I was completely tapped out for the rest of the day.

I still sometimes think I should go to grad school. Or write at least one book. But any time I start thinking about pursuing my ambitions again, I’m reminded of my physical limitations. And I don’t actually know what my illness will let me do.

I know that once it gets to be late September or maybe October, I can go back to having more of a life again. Of not having to stick so close to home and limit my outings so much.

But how can I find something that makes me feel productive and useful during these summer months, when my capabilities are so diminished? I feel like such a slug to be doing so little and spend so much time napping.

I know I questioned a lot whether I really needed disability in the winter. But now I’m absolutely sure that I do and I’m grateful to have it.