Well, excitement has abounded at the home of DH and crtclms. DH was transported from his job to the ER for the second time in 10 days. This time he didn't hit his head. The prior seizure, he caught the orbital bone of his eye on the corner of his desk on his way down, which gave him an impressive shiner. This time, he went into a fugue, during which he wanders around in a semi-conscious state.
So off to the ER I went. I couldn't find my purse, and during the hunt, I had time to snap a pic. I know how long it takes them to process him, and expected to arrive before he was released, and this turned out to be true:
So, leaf-type chandelier earrings you have seen; dirty hair pulled up; new lavender top with rhinestone embellishment from recent GW hunt; ancient pair of bleach spattered jeans from dog care; they look worse than usual because I was in a hurry, and pulled on dirty jeans. One attempt to hide part of the dirt was the boots. Now, I love these boots, one of my gypsy princess purchases, and really I do understand it is a matter of personal taste, but I saw them and had to buy them. The velvet inset on the top is very close in color to the sweater:
Ah yes, the infamous computer backdrop. Hey, sometimes it is the only way I am not too lazy to take the picture.
Anyway, you can see the velvet, with embroidery, trimmed with a narrow floral band. Tweed laced through, and the seam above the ankle is tweed, too. I bought these about two years ago, and one of the nice things about them is you can wear them with a longer skirt, or under jeans, and they just look like plain brown boots.
And we are back to the Land of Fucked Up Brains: This was not only the second time in 10 days I had to go pick DH up from the ER, it was the 2nd time I had to do so with a migraine. This is not to complain about his timing, but to demonstrate what a fun month we are having generally. In the fall, my frequent migraines actually morph into "Chronic Daily Headache." This is not only painful and incapacitating, it is embarrassing: Headaches are invisible, and how many times in a short period of time would you accept the excuse, "I'm sorry, I have to cancel, I have a headache," when this is the 3rd, 4th, or 5th time in a month I have had to cancel? Only people who know me extremely well can even tell I am in the midst of a headache. Plus, migraines manifest in a lot of "non-headache" ways, which can ruin any social outing, even without actual pain. Today, for instance, I have been "buzzy" because a weather front is coming in, and migraines are often triggered by weather fronts. What does "buzzy" mean? Hard to say, but I can feel things going on in my head. However, even though it was a term I thought I came up with on my own, I found anyone who has migraines or epilepsy knows what I mean when I say "buzzy," and many already use the term to describe their own cranial happenings.
It is also humiliating as to how it affects my marriage. "Not tonight, I have a headache" isn't a "line" in my home, it is a pretty much daily occurrence. While sexual activity as a general rule is helpful to headache patients, that is only the case when they are not in the throws of an actual attack. It is upsetting and guilt inducing to feel like you are not up to being an equal partner in intimate aspects of your marriage. I actually quit a medication that was working somewhat at controlling my head, because it totally destroyed my libido, to the extent I didn't even like to be touched. My neurologist agreed with me my marriage was more important than the medication.
DH has also had horrible, life-altering side-effects from medication. A lot of people don't realize that when you have a chronic illness, you are not only dealing with the illness itself, but also with the sometimes severe and dangerous side-effects of prescription pharmaceuticals. This is why I use Cannabis, and why I feel so strongly about protecting its medical use, and legalization in general.
Now, the activity of having to pull myself together to get DH did distract me from the pain a bit, and other than the purse mishap, I got to Stanford pretty quickly. This is one of the first times I had been to Stanford ER in the early afternoon, usually it has been at night. ERs are SO much calmer during the day! DH was awake and alert (he apparently had awoken while being strapped to the gurney). I actually know how to read the monitor he is attached to now, and all of his vitals, including blood oxygen, were excellent.
The nurses and doctors on call were very nice, because they weren't overwhelmed. They kept coming in to tell us what stage they were at with DH's release every few minutes, which has never happened before. Then, the doctor came in, and said DH's neurosurgeon, who is the head of the Stanford Epilepsy Center, wanted to talk to us before we left. Again, a first. But we knew seizures were coming too fast and hard. What we didn't expect was how blunt his Dr. F was. When he walked into the room, the first thing out of his mouth was, "This is not acceptable." He is concerned that DH is having so many seizures it may start causing more brain damage, or that he may really hurt himself hitting his head, which DH does regularly, and we have been lucky that a black eye is the worst thing that has ever come of it.
The question for both of us: What quality of life is acceptable, and what isn't? Are the number of headaches I have by refusing to take a particular medication worth the physical intimacy, not just sexual, but day to day, I share with my husband, worth it? How many seizures, how many drug side effects, will my DH be able to tolerate, and still lead some semblance of a normal life?
Monday's ER visit brought this question into sharp relief for DH. Dr. F informed DH and myself that brain surgery could no longer be postponed until next Fall as we had planned, and that DH's job was now officially secondary to his health. This is a little scary for us, because what some of you do not know is, DH got his current job a few weeks before I started this blog. This had been after being laid off for 10 months (he had had one short job that blew up). It is a fabulous job, that he loves, and we are pretty sure they love him. We don't want him to lose it, and we frankly can't afford it, especially if DH has the surgery, and we don't resume receiving income after his recovery.
But, he has violent seizures about once a week, and less violent ones one or twice a week. He can't drive. He has had seizures on his bike, and on public transportation, so even though he isn't a danger to others, he is actually very likely to get hurt even when not behind the wheel. He has to take almost all his sick and personal days to recover from seizures. He has visible hypoxia of the brain (under-oxygenated parts) on his MRIs.
I had to stop working at my job as a doggie daycare provider because my foot was reconstructed in January, and it only now is beginning to feel like a real foot (it takes about a year to totally heal). So even though my salary was meager, I was at least working. Now, my foot is not strong enough for dog care, and my headaches are preventing any aspirations of any other part-time work. I can only work half-time, because of my migraines, and my mood disorder. Like headaches, bipolar illness is invisible, and like migraine, it limits my life even though it leaves no mark on me physically. In order to keep myself even somewhat healthy, my p-doc in Pittsburgh told me I should only work part time, or at most, a clerical level job if I were going to work full-time. So much for that Ivy League education.
The round-about point is, I am bringing in zero income myself. We might be entirely reliant on an account we were really hoping on not touching. My only "hope" is that he is eligible for disability from work or the State. His contract doesn't say he has to have worked there any amount of time in particular to be eligible for their benefits, so we have our fingers crossed, but are prepared for either possibility. [The old law student in me wanted to abbreviate that to "K," which is a legal shorthand for "contract."] Because he has only been there a few months, we don't know what kind of leave he is eligible for. He would be willing to take an unpaid leave, if it meant there would be a job to go back to. That would wipe out our savings (making Goodwill even more attractive to Ms. Hypo-mania), but we have enough. As one of my friends said to me yesterday, we can get more money, I am thankful we have what we do. DH's health is more important than our savings, any day.
We are upper middle class, even given the loss of income and savings during DH's unemployment. We have had health insurance, either through COBRA, or his new job. I know it isn't exactly the same as those families who have to declare bankruptcy, and I understand that most of our monetary hit did not come from DH's or my conditions per se. But the expense of co-pays for meds and treatment, seeing doctors, having surgery (we both will have had surgery in 2010), ER visits, the lost days to migraines, the compulsive spending that often accompanies my mood changes, it helps to chip away at our income.
So that can also be added to the daily cost, in money, body, and spirit, of chronic illness.
Now, I do have purchases and outfits to show you. And tomorrow is a fundraiser for a Food bank, where I intend to do some Hannukah shopping, and I will come home with other things to show you. But even the little "fashion" I did have in this post didn't seem to fit the tenor of the post, so I am saving it for this weekend. As Eddie Izzard would say, "Ciaooooo!"
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