Dr. Google

When medical things go wonky, you should be banned from the Internet. You should not be allowed to access Dr. Google until such time as you get to talk to and sit down with your actual physician. I'm sure some will be outraged by this statement, but this past week has driven home the notion that the ready access to information is both a blessing and a curse for those with chronic illness like myself.

Be mindful the information you consume, human. 

Last Monday I had an MRI at the behest of my rheumatologist. She'd been suggesting it for some time and I just never took her up on it. Mostly because the last time I had an MRI for this issue nothing showed up and the doctors made it seem like I was an attention-seeking hypochondriac. It didn't make sense to have another MRI for the same symptoms when the last one showed a lovely brain free from abnormality. Of course, that was about 15 years ago, so things may have changed. Since my balance and migraine symptoms were getting worse, I figured I should at least make sure things weren't dangerous in my noggin.

Wise goat approves of my choice. Those horns don't fit in an MRI, do they?

Apparently they've changed the contrast dye for brain MRIs. First, I got nauseated and wretched several times. I was exceedingly grateful that I had not eaten breakfast first. Then, after the MRI, my left eye felt weird. When I got back to the dressing room, I look in the mirror and to my horror, my left eye looked like someone shoved a walnut under the lid! It was getting difficult to keep open. I sighed and figured it was an allergic reaction. TV shows are right: you really can swell up to comic status due to an allergic reaction. Numb and tingly, too. Anyway, they gave me a healthy dose of Benadryl in an IV and about 3 hours after I checked in, I was finally released. Ugh! But that's not the really fun part of the story.

That's right, Friends. There's more.

I saw my neurosurgeon later that day. Through my Benadryl induced haze, he told me that my neck looks great and I have fully healed. He then told me he looked at my MRI and didn't seen anything out of the ordinary. I commented that it didn't surprise me since vestibular issues aren't known for producing unusual MRIs. He concurred, but then things got complicated.

Uh-oh. Goat's getting grumpy.

Two days later, I was thinking that there's nothing to be done about my balance issues other than what I was doing and that I just would have to manage somehow when I got a call from my rheumatologist. Nothing of major importance except that she saw evidence of small vessel disease. Now, why a neurosurgeon didn't mention that, I don't know, but she saw it and recommended that I increase the blood pressure medication I take to control the vessel spasms and migraines as well as add a baby aspirin daily. This would apparently help my balance issues and still be ok with the Von Willebrand's Disease (easy bleeding disorder). I thank the nice nurse and give my GP a call requesting an increase in my Amlodipine. An hour or so later, I get a call from that doctor's nurse saying that no, we're not increasing the BP medication because my pressure is already low and he doesn't want to bottom out. I am to request that the rheumy send the MRI report and then see my GP in a few weeks...on the first day of my winter break. *sigh

 

Oh sure. I can wait. The walking in a funhouse feeling and the visual migraine auras aren't that bad.

Well, I am glad that the GP called because I was just going to take two of the Amlodipine as the rheumatologist suggested knowing full well that the first few days would be a little unsettled. I was home on Thanksgiving break, so perfect time to adjust to a med change. I could also Google "small vessel disease" freely. Bad idea.

I know, Tom. It is astonishing the amount of information out there.

I got some fairly scary information about small vessel disease. It's common in lupus patients and people with migraines. That point is fairly solid. However, the results of that condition get a little muddled. One of the first sources listed 75% incidence of death or disability as a result of diagnosis. Another site said that within 7 years of diagnosis, death was likely due to stroke or heart attack.

What the actual fuck?

Another one talked about micro bleeds, mini strokes, and the need to control things like cholesterol, BP, and weight. All of which are excellent for me. Apparently, the risk of stroke and heart attack are much higher with small vessel disease. I did discuss all of those risk factors with my rheumy's nurse, so she made note of my awesome cholesterol and my 90/76 BP. However, according to Dr. Google, while the treatment prescribed is sound, this condition is also known to the second highest risk factor for dementia after Lewy bodies.

 

Processing...processing...nope. Freaking out now.

Great, so my brain is not getting enough blood, which leads to the balance issues, the migraine increase, and now risk of micro bleeds and mini strokes and regular strokes which then leads to developing dementia usually in people 60+ years old, but hey! I've got lupus and migraines so why not get a 20 year jump on losing my mind? Sounds fun.

Totally fun. 

I did read one article that said small vessel disease in migraine patients isn't anything to worry about. That the white brain matter isn't worrisome for the day to day living. I read another article chastising the doctors and professionals who publish about this condition for throwing the term "vasculitis" around too freely. They simply don't take enough care in their word choice, which then produces search results like the ones I got. Even though I was careful to always search for just small vessel disease, the inter webs would inevitably provide articles that used vasculitis instead of small vessel disease. So I Googled again and paid attention just to articles that said small vessel disease, not vasculitis or other "associated" wording. Being discriminating in your search wording and subsequent results is frustrating. Even articles on blood pressure couldn't agree whether mine was average or too low for BP therapy. This is what my GP is concerned about. I think my lowest ever was 88/69 give or take a point. Even at the height of the MRI allergy, my BP never got above 100/80.

Zen moose thinks I should just keep swimming.

So what am I to do or believe at this point? Get the MRI report to my GP for his consideration. Done.  Await his advice? Ok. I trust him, more than the neurosurgeon who didn't see small vessel disease. Given my balance issues and the numbness I always mentioned when he did the safety pin sticks, maybe he should have paid a wee bit more attention. Whatever. Our relationship is ended and I never have to deal with his slightly misogynistic sense of humor again. Hope that my GP, hematologist (Von Willebrand's is contraindicated for NSAIDs like ibuprofen and aspirin), and rheumatologist  figure this out? Guess so. Get regular exercise (I do) and quit drinking? Ok. I was already moderating my alcohol consumption, but it's a big risk for me with the NSAIDs and the medications I take. It's also not helpful to my inflammation or migraine management. Fine. Try not to freak out at the idea of losing my mind or suffering strokes? I'll work on that. Stay away from Dr. Google? Definitely.

Um, I don't know what's going on with this pig. I searched for "hope." Does this give you hope?

I Asked What I Can Do, and So I Did

I wore a safety pin Friday. I'd heard about it on social media following the election. The reports connected it to what happened in the wake of Brexit. I thought, hmmm, it seems trivial, but it's safe and it's a start. Maybe someone will see it and feel a connection, a support, or a relief that they aren't alone. As I predicted though, there were a few blogs criticizing the practice as ridiculous and embarrassing and toothless. The same criticism hits pink ribbons in October or yellow rubber bracelets for cancer fundraising. Funny, I don't recall a lot of criticism when everyone was wearing flag pins after 9/11, but I could be wrong. For now though, I'd rather wear it knowing that it is a gesture that I back up with other actions.

Well Harry, that's not quite what we had in mind, but...

I signed a petition pleading with the Electoral College not to vote for Trump even though many of them pledged their votes earlier this year. It's a thing apparently. An option they have. It's highly unlikely they'd ever do it, but it's out there and it offers a wee sliver of hope. Just maybe they'll be able to see past the fiction of Trump somehow restoring the labor jobs that are never coming back to the Midwest so that we aren't rewarding his vile rhetoric with the highest office in American government. While I hear where laborers are coming from and how disenfranchised they are and how the Democrats hung them out to dry, by raising up Trump or by not voting at all for president, they've harmed countless Americans by telling them they mean less. They are worthless. They don't matter. It sickens me. Putting my name on the petition means I stand against that thinking. While I know our economy needs a boost, I am not willing to sacrifice the protection and safety and hard-fought civil rights for immigrants, people of color, and LGBTQ Americans. A petition is a small gesture that costs me nothing except a bit of flack on social media for not understanding how the Electoral College works (I do) or my simple naivety (I know it's unlikely--give me some credit). I know it's a pittance, but I did it anyway because I need hope.

That's right, Moose. I know what I'm doing, why I'm doing it, and how little chance it has. Doing it anyway.

I made a donation to Planned Parenthood in the name of Mike Pence. I find it entertaining that he'll get a thank you notification in the mail from PP. While it may just prove to him that private donations are how PP should be funded rather than through government spending, I hope he gets inundated with thanks notices to show him just how many people believe in PP's mission and it's need for continued funding. Given his anti-science views on things like climate change, evolution, and smoking risks, perhaps I'll make a few more donations in his name. I don't have a lot of disposable income or anything, but when I consider putting my money where my mouth is, I'd like it to get caught in Pence's throat.

...Mike Pence! 

I don't have a lot of money, but I will use it support agencies that will suffer due to your ignorance.

I also sought volunteer opportunities with local and state agencies that support equal rights like PP, Naral, and the Human Rights Network. I don't know what kind of opportunities they will tell me about or if I'll be able to volunteer as much as I'd like, but I'll know more than I did before about the activities in my community and state to make my voice heard or to make sure someone else's is raised up.
Show up.
Stand up.
Speak up.

Probably not, Homer. 

These things I can do. I might not be able to change the outcomes of elections, the minds of the white working class, or the persecutions that have already begun, but I can wear a safety pin. I can sign petitions and lobby elected officials. I can donate time and money to human rights organizations that protect minorities of all varieties. I can use my voice and my time and my money to try and do right by my fellow humans every day. I can stand with someone who endures public racism, bigotry, or misogyny. In the end, we all need to ask ourselves what we can do to for each other. After all, look where single-minded self-interest got us.

I'm trying little goat. I'm trying.

Aftermath

On Sunday, I usually post a new blog. This past Sunday though I decided not to. I was uncertain of a topic. I didn't know what to say, so I said nothing. Instead, my husband and I enjoyed a double-feature of Miss Peregrine's Home for Peculiar Children and Dr. Strange. Then we went out to dinner at one of our favorite restaurants. You could say I was avoiding thinking about Tuesday. I was. I totally was trying to assuage my increasing anxiety about Tuesday. When I woke this morning, all my avoiding meant precisely jack-shit. The unthinkable became reality.

It's ok, Dean. I totally get the impulse. I did a little arm waving while I tried to wipe the stupid away, too.

I went to bed last night less than hopeful. I had been sure that as I drifted off to sleep, the exit polls would show that the America I know and believe in would reject hatred, bigotry, and privilege. My mouth gaped, my eyes popped, and my breath caught when I saw the headline that Clinton conceded. Disbelief. Shock. Fear. I felt them all in a swirl of knowledge that for the next four years we live with the possibility of all progress being scrapped to feed an ego and ideology that should not be validated in the highest office of our government. I then swapped my planned outfit of happy pants for all black, an orange scarf, and my Munch socks.

If I couldn't scream every time I thought of the election, at least I could live vicariously through my footwear.

I scrolled through Facebook on occasion today and was heartened by many on my newsfeed who shared my utter lack of disgust that there will now be a President Trump. I taste bile when I type that. 

Disgusted Goat feels my pain.

I was also heartened that Hillary won the popular vote. How incredibly awful is it that despite winning the people of our country's vote, an antiquated system provided for in the Constitution gets to decide? As much as I know what the Electoral College is, it mystifies me that they get the final say. My inner cynic can't help but cry foul when this group of numb-nuts somehow can usurp the people's vote. If the majority of people say one person should win, it seems like it shouldn't be possible to then hand the vote to the asshat Cheeto who is supported by more than one hate group. The popular vote rejected the asshat Cheeto. How can Electoral College members even look themselves in the mirror knowing what they've done? They have validated every bigoted, false, and hateful thing that has come from that man's mouth. They have validated his running mate's backward views on reproductive rights and sexual identity. They have established a system where the judicial, legislative, and executive branch now act in collusion rather than checks and balance. The asshat Cheeto said the system was rigged before the results were in. Perhaps he was prophetic.

If the one making the claim of rigging benefits from the rigging, then isn't that more like rubbing people's noses in the fact that you've actually rigged the system in some way? Good question Goat.Fabulous hair BTW.

Anyway, I've gnashed my teeth, vented to my husband, and consumed my beer. I've also sought information for volunteering at my state's human rights agency, Planned Parenthood offices, and community action group. It's over. It's done. Now it's time to make sure my voice is raised with the others to reject hatred, to spurn misogyny, and to cast out racism with every fiber of our collective humanity.