Regaining a sense of control

Once more, I am participating in A Chronic Voice’s monthly linkup.

words: paying, attending, organizing, plunging, knowing

Plunging into a new diagnosis

In early September, I was plunged into the world of migraines.

Prior to August, my neurologist(who specializes in FND) and I had suspicions that some of the occasional headaches, nausea, and excruciating arm pain I occasionally experienced were likely migraines. I also had moderately painful headaches from time to time.

It wasn’t a primary concern for either of us, but he would prescribe me migraine and headache meds from time to time to see if they’d help when the symptoms hit, and I’d let him know if those medications helped the next time I had symptoms(spoiler alert – they didn’t).

We didn’t worry about it too much, because they didn’t happen very frequently, and when they did, I was fully recovered within a few days, a week at most.

This headache started in mid-August, and when it still wasn’t gone in early September, I started to get a bit worried.

I called my neurologist’s office and he agreed that this was unusual and required treatment, so he prescribed steroids to help break the migraine and told me to call him back in 5 days if the headache wasn’t gone.

Every week since then, I have interacted with somebody about my migraine and had had some form of a medication change.

Every 5 days, I have had some form of medication adjustment, and have spent more time in a hospital in the past 10 weeks than I have since Al’s acetabular fracture two years ago.

The migraine has been close to all-consuming. Screen and light sensitivity kept me from doing the work I intended to do for this blog, and sunglasses became my new best friend.

I was buying drinks full of electrolytes like it was going out of style(I normally just drink water), and quiet and shade were my new watch-words.

The pain from this migraine isn’t the issue, it’s hovered at the 3-4 level on the 10 point scale for most of the time, but the screen and light sensitivity have made any computer time or phone usage painful, and the whole treatment and recovery process has been extremely frustrating.

Organizing my life around these changes

With the migraine taking up so much time and energy and preventing me from carrying through on my planned activities, I had to re-evaluate what I was doing, what I could do, and organize the pieces of my life into something manageable.

This is a somewhat common occurrence for me, creating a ‘new normal’, but it doesn’t mean it’s easy.

My top priority has been, for the most part, getting rid of the migraine.

I know dark room rest is most often the suggested path, but I really couldn’t do it for more than a day or so here and there, mainly because the pain level wasn’t so high.

I focused instead on getting the right medication(which sometimes included multiple calls to the doctor’s office for the next prescription), getting lots of rest(fortunately many of the recommended treatments had drowsiness as a side effect), minimizing light and screen time, drinking electrolytes, adding magnesium to my vitamin roster, and doing my best to minimize loud noises and bright lights.

I’ve been sleeping around 10 hours a night, sometimes taking daytime naps, and generally laying low between my social outings(mostly trips to the city for BiRequest associated events). Instead of watching TV or using the phone or computer, I spent time coloring and reading.

Another big priority was Rorschach. Since his IBS diagnosis in August, Al and I have adjusted his diet(well, mostly – he’s still getting a bit of his old kibble mixed in with the new stuff because we still have some and he and Nigel share the dry food), and I have needed to give him a daily prednisone.

Between his diagnosis and his vet visit in late September, he has regained about 3/4 of a pound, so we’re feeling hopeful.

He still curls up by me and sleeps in the bed, but he isn’t thrilled that I’m forcing a pill down his throat nightly.

Al can’t pill Rorschach at all, because when he tries, Rorschach runs under the bed, where Al can’t get to him.

Overall though, I’m able to do it with minimal fuss(or scratches), so that is a huge improvement.

Another high priority was(and still is) BiRequest. Now that the worst is over(I hope) I am preparing to help organize the leadership of BiRequest.

The closest thing the group has to leadership are the facilitators, people who have led one or more meetings or have trained to do so. Everybody else is a ‘member’ which translates into ‘they have shown up to at least 1 meeting’.

So now that we have survived the mediation, kept most of the group together and have continued to hold meetings through it all, the facilitators are going to meet and plan our next steps and lay the foundation for running BiRequest.

I have training in organizational management, so I am planning to contribute as much as I can to that process: right now we’re setting up that planning meeting.

My final big priority has been this blog. Despite everything, I have gotten out a post each and every week.

There was a lot more I had planned to do this fall – I had spent part of the summer planning for it, but at least I maintained my personal minimum expectation: a new post every week.

My plan for the fall had been to run a sales campaign for my first real offers. I completed the sales page in July, and they are active now.

So if you are interested in coaching towards taking back control of your medical care or have concerns about government benefits, please see if I could be of service.

Attending to my social needs

BiRequest has been and continues to be one of my primary social supports, and attending BiRequest events and spending time with friends from BiRequest has been one of my primary focuses.

However, that isn’t all that I have been doing!

Al and I have dinner almost every Sunday with his parents, then we usually spend the evening watching TV together.

With the migraine, I’ve been coloring instead of watching, for the most part, and we’ve been leaving a little earlier than we usually would some weeks(it’s really hard to ignore a TV in front of you, and I’ve been tending to fall asleep around 11 when we usually feed the cats), but we’ve been continuing to get that family time.

In August, I got some additional time with my sister, nieces, and nephews before everybody returned to school(or daycare), and in September I attended my nephew’s birthday party.

Al and my gift was a hit, and my younger niece decided that I was the only acceptable substitute for her mom to take her to the playground.

I really love the time I get with the kids!

The first weekend of October was a friend’s wedding, and I actually made it through the first several hours of celebration without my migraine spiking.

The last hour was more painful, but overall it was a great evening with friends who had absolutely nothing to do with BiRequest.

Al and I had a great time, and he was up for more dancing than he had been in years!

My mom had an event at her church that she invited us to a couple of weeks later, and despite the migraine, I made it down and had a delicious country barbeque style meal and learned some line dancing moves as well.

I needed to wear my sunglasses the whole time because the entire space only had fluorescent lighting, but I had a fun evening!

I was pretty exhausted afterward and the next day was one of my dark room rest days, but it was worth it!

Paying the price

I am paying for a lot of this, on multiple levels.

I suspect that the migraine itself may have been caused by the emotional stress associated with the attacks on Paul and, by extension, BiRequest.

My love for(and emotional reliance on) the group combined with the gossip, rumor-mongering, and negative input put me in an emotionally vulnerable place, and while the situation is closer to resolved, the end result is that I am going to need to put more time and emotional energy into the group during a time when going to meetings is an emotionally mixed bag – more stressful than it ever used to be.

I recognize that this is the only way it can ever get back to being the safe space I have loved all these years.

It is my choice to soldier on in this way, because the group is so important to me, and while I am symptomatic in the presence of another member(due to his ablism and disrespect), I continue to go, to make sure the space feels welcoming for our new members, and to see the many friends I have there.

Other friends are taking some time away from the main group, or are otherwise distancing themselves. Each person needs to do what’s best for them – and for myself, I need to be there and help make it better, rather than staying home and letting my anxiety and fears control my actions.

The migraine is still racking up additional financial and emotional costs.

So far, I have made two emergency room trips, had a set of MRI’s done under sedation(the only option, with my FND(Functional Neurological Disorder) symptoms), five or six different additional medications(fortunately all relatively inexpensive or small enough quantities that it felt that way), three appointments with a new neurologist(two for treatments, a nasal pain blocker and pain blocker shots), magnesium supplements, and way to many bottles of Gatorade and vitamin water!

Plus, of course, I lost my ability to do more than minimal work on this blog or Hours Well Spent.

Getting Rorscach diagnosed and treated has additional financial ramifications for us. Besides all the diagnostic testing(even with the insurance it was expensive – without the insurance, it would have been impossible), he’s going to be eating expensive food and possibly requiring medication for the rest of his life(hopefully a long one!).

My credit card is close to maxed out, thanks to the extra expenses, and it will take me a long time to pay it down to a reasonable level. But at least, I had it when I needed it, and if I get a few clients that will help a lot.

I do still have the migraine, but things have improved enough that I’m hoping it will break soon!

Knowing more now than I did before

So, what do I know ow, that I didn’t before?

A lot, actually.

On the migraine front, I have an actual diagnosis: episodic migraine with aura. I like having names and diagnoses, it helps me do the research I might need to better understand my condition.

I know that this definitely is a migraine. The MRI ruled out a brain tumor, aneurysm, or other severe brain abnormalities.

I have confirmed that I don’t have Lyme disease or signs of other health issues that would cause a headache like this.

I know that estrogen level variations contribute to this type of migraine, so I talked to my gynecologist about adjusting my birth control to something without estrogen.

I also learned that one of my antidepressants is also commonly used as a migraine preventative, which may have been helping to minimize my migraines all these years.

It’s also possible that the few days that I didn’t have access to those pills(I didn’t get a refill in time) may be part of why this migraine has lingered so long.

I also learned that the minor vision abnormality I have(which started when I was 9 or 10) is correctly called visual snow syndrome, and is associated with a slight increase in the risk of a stroke. It also has no treatment protocols(lucky me!).

Rorschach should be able to live a long and comfortable life, so long as we feed him right and keep an eye out for complications.

I know that his insurance will reimburse us at least some of the food costs, so that’s another thing for me to work on.

I know that BiRequest as an organization is going to survive, and I am hoping it will grow stronger having survived this ordeal.

I know that I survived another stressful period in my life where my values and patience were tested, and I came out in pretty good shape, all things considered.

I know I have good friends in BiRequest and have reaffirmed that it is a worthwhile emotional investment for me.

Most importantly, I know that whatever the universe has in store for me next, I will get through that too!