Work with my PCP and Clinical Pharmacologist to better control my blood pressure. This includes trying various new medications, having as many appointments as they deem appropriate, and checking and recording my blood pressure at home.
Better track my health issues. Use the apps I have. Tracking can lead to finding triggers and that can lead to better overall control of my disease.
Get a medical marijuana prescription. Confirm my hospital’s policy, then find a pain management doctor if necessary. Register with the state as needed.
Commit to taking a multi-vitamin daily. This is the one supplement I always forget and I need to be better about it.
In 2013 I accomplished the majority of my health resolutions. I did change my DMD from Copaxone to Tecfidera and I haven’t had an exacerbation (with new disease activity) since. I increased my gabapentin dosage and had a remarkable upswing in my walking ability because it much better controlled the pain and muscle fatigue. As for my migraine triggers, they seem to frequently come along with other MS pain, so I still need to track them further to figure this out. I did not obtain medical marijuana last year as the state was not yet set up to provide it, but I did join an organization supporting patients so that I could learn about the process.
Will o’ the Wisp by Tom Hammock
My rating: 4 of 5 stars
Aurora’s parents die when they eat death cap mushrooms. Aurora survives and is sent to live with the grandfather she’s never met on Ossuary Island. At first she thinks she doesn’t fit in, but gradually she makes friends with her grandfather, his pet raccoon Missy, Mama Nonnie the hoodoo conjurer, and even a boy she meets in the swamp. But things on Ossuary Island aren’t right. People are disappearing. Dying. And the people might need Aurora’s help to survive.
This book was beautiful. I loved, loved, loved the art. The ends of things–hair, beards, tails, clothes–drift off into question mark shaped wisps. It was great how Aurora’s gradually wore more black and white stripes–there were times she and Missy were matched striped friends. It was as cute way to show how Aurora began to fit in on the island and in her new family.
I don’t know a great deal about hoodoo, so I can’t vouch for the accuracy of it in this book. But I did find it to be treated respectfully. Though Aurora and her family are white–Aurora especially so with her pale skin and white hair–you will see a variety of people of color living in this Louisiana town. I worried at first that Mama Nonnie would be a “magical negro” but she was fleshed-out as a character with her own dreams and desires, she didn’t exist only to further the plot.
I liked this a lot. It was eerie, sad, and beautiful, all at once.
(Provided by publisher)
Hopeless, Maine Volume 1: Personal Demons by Nimue Brown and Tom Brown
My rating: 4 of 5 stars
Salamandra is an orphan. One of many on the tiny island of Hopeless, Maine. And she’s very afraid and lonely. Until she meets a friend, someone who’s always there for her. The only one who loves her, the only one who understands. Her own, personal, demon. When Sal gets rid of the demon, it moves on to target others. Together with Owen, a real friend, Sal fights this personal demon and makes things on Hopeless just a bit brighter.
This book is lovely. It’s dark and slow and feels like three a.m. when anything could happen even though you’re so close to the dawn. The island is alive, with eyes and wisps that reach to grab. Sal is beautiful, a bit wild, a bit frightened, and very smart, and Owen with his height binds the sky to the ground in the same way he binds Sal to Hopeless.
Hopeless, Maine Volume 2: Inheritance by Nimue Brown and Tom Brown
My rating: 4 of 5 stars
The authors say this book isn’t about growing up, it’s about thinking you’ve already grown up and realizing you have a ways yet to go.
Finally giving her full name, Sal finds out she has a living relative on Hopeless. A grandfather, who lives in a lighthouse, and who everyone thinks is crazy. At the same time, Owen’s mother lays dying. Everyone tells him there’s no cure, but he believes there has to be one and that they’re letting her die.
Sal’s grandfather lives in the lighthouse for a reason. He’s there to guide people away and to wait for them to come back. He did it for his family, and now it’s possible he could do it for Sal and Owen. But only one of them can leave Hopeless; who will it be?
If anything, I think the art in this book is even better than that in the first. Everything is living. Hopeless is as alive as its inhabitants, and as eerily beautiful.
(Provided by publisher)
It’s supposed to reach 100 degrees Fahrenheit today and since that’s changed all my plans for the day I suppose now is a very good time to tell you about a big part of my invisible illness: Uhthoff’s Phenomenon.
Basically, Uhthoff’s Phenomenon (or Sign) is a worsening of Multiple Sclerosis symptoms caused by heat. It happens because the heat makes it even harder for your already-damaged nerves to function. Something as common-place as a hot bath or shower is enough to trigger symptoms. (Which is why, for years, the “hot bath test” was used to diagnose MS.)
You might be thinking of it as “heat intolerance” but that doesn’t describe the scope of it. I’m not intolerant of heat, I’m knocked on my ass by heat because all of a sudden my nerves no longer transmit the right messages or want to work properly. (Knocked on my ass was a literal statement; I can fall down if the heat is too extreme and I’m unable to cool off quickly enough.)
Here’s the scary part: an increase of 1/4 to 1/2 of a degree Fahrenheit is enough to trigger symptoms. Now try to imagine what an increase of, say, 30 degrees above my optimal will do to me. Yep, that’s why I’ve changed all of my plans for the day to “stay inside an air-conditioned space.”
So what actually happens to me in the heat? The symptoms come on almost immediately; it takes only minutes for me to start to feel the effects. Then I feel drowsy and my legs begin to feel weak. If I’m walking, I start to wobble. I tremble and shake. I slur and forget words, and have trouble with my memory. I feel as if I’m going to pass out. Sometimes I fall or nearly fall down.
The good thing is, under normal circumstances the symptoms can be rapidly reversed by cooling down. By under normal circumstances I mean, being able to cool down immediately. The longer you’re exposed to the heat, the longer it will take to feel better once you begin cooling down.
So if you need me today, I’ll be inside where it’s air-conditioned.
2. I was diagnosed with it in the year: It ranges from asthma in 1987 to MS in 2011.
3. But I had symptoms since: With MS, I had symptoms since I had the shingles in 2008.
4. The biggest adjustment I’ve had to make is: Not being able to work or go to school.
5. Most people assume: I’m better or worse than I actually am.
6. The hardest part about mornings are: Waking up into a bad pain or disability day and realizing any plans I had must now be scrapped.
7. My favorite medical TV show is: I guess it’s Royal Pains, but I don’t like it because it’s a medical show. (Once they did a spinal tap on someone’s living room floor! OMG, NO!)
8. A gadget I couldn’t live without is: My smartphone. It stores my med list, my appointments, alarms, brings information to me, and brings me to the world when I otherwise can’t get up and out.
9. The hardest part about nights are: Being woken up by pain and being unable to return to sleep.
10. Each day I take 17 (did I count that right?) pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: consider them, try them, and think of them as something that works hand in hand with my conventional treatments. Massage, especially, works wonders for me.
12. If I had to choose between an invisible illness or visible I would choose: I wouldn’t everm make this choice because I think everyone’s particular illness is the worst one for them.
13. Regarding working and career: I miss it. I miss it sorely. It’s a tough thing to talk about so I rarely do.
14. People would be surprised to know: I’m not sure. I’m an open book about my illnesses.
15. The hardest thing to accept about my new reality has been: Not being able to do what I want when I want.
16. Something I never thought I could do with my illness that I did was: I don’t think that way. I tend to assume I can do anything and then find out after trying.
17. The commercials about my illness: Are pretty much fine. I can’t say I’m swayed by them one way or another.
18. Something I really miss doing since I was diagnosed is: Being able to make plans and keep them without illness interrupting.
19. It was really hard to have to give up: School.
20. A new hobby I have taken up since my diagnosis is: No new hobbies, just more of existing hobbies.
21. If I could have one day of feeling normal again I would: I feel normal now. But if I could have one day pain-free and able to move like I used to I would go outside and run and run and run.
22. My illness has taught me: Patience. Patience with others and patience with myself.
23. Want to know a secret? One thing people say that gets under my skin is: I’m really touchy about people scowling and commenting when I use my handicapped parking placard. I have it for a reason, it is mine, and I do need it. You haven’t seen my MRI films so you have no way of knowing about my illness. Also? Hi, do you see my cane?!
24. But I love it when people: Extend invitations to me that acknowledge I may not be able to keep plans I make. Things like “when you’re feeling good” and “spur of the moment” are wonderful things to hear. They show me the person understands.
25. My favorite motto, scripture, quote that gets me through tough times is: I really don’t have one. When times are tough I turn to family and friends.
26. When someone is diagnosed I’d like to tell them: You are not alone. Seek out information on your condition. Find a good neurologist with a good nurse.
27. Something that has surprised me about living with an illness is: My personal resilience. I had no idea I could withstand so much.
28. The nicest thing someone did for me when I wasn’t feeling well was: The Husband often does nice things when I’m unwell.
29. I’m involved with Invisible Illness Week because: I think it’s important to spread this knowledge.
30. The fact that you read this list makes me feel: as if you want to understand me.
For me–and for so many of you with chronic illnesses and/or disabilities–going to a con like this, or even going out to dinner with friends, is a delicate balancing act. I can’t just get up and go. I have to plan. I have to prepare. I have to realize that a two-hour or two-day event is going to cost me far more than that in time.
Readercon begins with Thursday evening programming and it runs through Sunday afternoon. Last year I went to only two or three panels before being overcome by pain and exhaustion and having to forget about the rest of the con. (Though, based on the timing, it’s likely I had active MS lesions during last year’s con, making it a far more difficult experience than it was this year.)
This year, I made extensive preparations for Readercon. I spent the first three days of the week resting. Stockpiling my spoons, if you will. It was boring. I wanted to go out and do things. But I knew if I did, I wouldn’t have nearly the energy I needed for the con. I scheduled a massage for Thursday afternoon. Massage is a great help to me; I go there in great pain and with fatigued muscles and leave there nearly pain-free and able to walk with ease. Then I spent the hours between the massage and the evening panels resting.
Friday morning I woke up and had to make one of those horrible adult decisions I hate to make. I could tell from how I felt that there was no way I would be able to attend the seven hours of panels I wanted to attend. I had to choose my favorites and acknowledge I might not even be able to attend all of them. It’s a horrid feeling. I want to go out and do things. I want to do ALL the things, as Allie Brosh would say. But my body won’t let me, so I have to be responsible and care for myself. It sucks.
So I took some meds, drank some water, and went back to sleep, all the while mourning the things I’d miss. It was the right choice. I had time to eat lunch, stretch, and otherwise be fully prepared for the afternoon panels. I stayed for almost four hours until my achey, yawning body let me know it was time to go home.
I didn’t make it to Readercon yesterday or today. That was it, my body was done. I can tell I’ll still be feeling the effects of it tomorrow, and possibly even further into the week. But because I was careful and took care of myself, I was able to attend some of the con and have a lot of fun. It was a successful balancing act. I’m glad I did it.