Highs and Lows of an Eventful Spring

With temperatures warming in February this year, I was worried that spring was going to be warmer too. While we've certainly had some hot spells, we've also enjoyed some nice moderate to cool days. Before the dreaded heat and humidity settles in for the long summer ahead I wanted to take a moment and look back at the spring that was.

Spring Favorites

As usual, I spent a good amount of time resting and/or distracting myself from my various pains with Netflix. In April I started streaming a show called Life Below Zero. I would call it a docuseries. Sort of a hybrid of a reality show and a documentary. It follows the lives of 5 people living a subsistence life in remote areas of Alaska.

I fascinated by the way these people live. Their lives are so remote and harsh, so different from the way most people in the U.S. live. Netflix is now streaming 4 seasons of this compelling series. If you are thinking about checking it out just be aware that occasionally they mount a camera to an ax or shovel and show dizzying footage from the perspective of the tool. It doesn't happen a lot but it does happen. I have to look away because it increases my nausea and can make me feel dizzy.


Spring Success

It took some doing and I wasn't sure it was going to happen but I managed to paint our mailbox and the iron stand it sits on. Despite only being 3 1/2 years old the black paint on the iron stand was already beginning to rust in places and the paint on the metal box had faded a fair amount. I figured a good 2 or 3 coats of a rust prevention Rust-oleum paint would take care of the problem and cost only a few dollars. A much better option than letting it rust, look terrible and then needing to replace it.

I found a nice gray color that matched the gray siding on our house well and then waited. The waiting was the tricky part. I had to wait for the perfect combination of mild temperatures, very low winds, cloudy, dry, day when I had very low pain. Thankfully this perfect day arrived and I was able to do this project. It didn't take long at all and it made a huge impact.

The other success of the spring season was the planting we've been able to do. After I developed all this pain in my hands and feet late last summer I was forced to abandon my garden entirely. It didn't take long for everything to die. I honestly wasn't sure if I would be able to do any sort of planting this year but I decided to give it a try when I found a medication that helped to reset most of my hand pain overnight.

I started slowly by planting some snow pea seeds. I honestly didn't imagine it would actually grow but it has far exceeded all of my expectations.

As of today it is 3 times bigger than any pea plant I've tried growing from the store in previous years. Best of all it required absolutely nothing from me. All I did was put several seeds in this small garden bed and then put a couple trelllises in when they poked through the dirt. We've had plenty of rain this spring so I've really not had to anything to it. Today it is about 9 inches taller than the trellis and producing snow peas. Tomorrow I will pick a few and make a stir fry with them for dinner.

I also planted a few pepper plants - green, yellow and jalapeno. They have also grown much larger than any other year. The peppers have just begun to bud. My fingers are crossed that I will have fresh peppers and fresh snow peas ready at the same time so I can enjoy both in a fresh stir fry in the weeks ahead.

You can see how the peppers quickly dwarfed the marigolds I planted with them. The marigolds are great for keeping bad pests away from the veggie plants. Just like with the snow peas, these peppers have been super low maintenance. I have watered them a few times but otherwise have not needed to do a thing.

My rose bushes are also having an especially good year. I cut them back a bit early in the spring because they had gotten too big and were touching the siding of the house. Apparently, this trimming made them very happy because they just exploded with new growth and produced more roses than any previous year.

I've had such a wonderful time watching my plants grow this spring. I'm so glad that I decided to go ahead and put some some effort into the garden. With minimal effort, padded garden gloves and pacing, I've gained so much pleasure and soon some garden fresh veggies.

Spring Failure

As the temperatures have warmed, the pain in my feet has gotten worse. I'm beginning to wonder if the increased warmth and humidity is responsible for the extra pain. My feet have always had a tendency to overheat in the summer. I'm one of those people who can't wear closed shoes and socks in the summer because my feet will quickly swell and become overwhelmingly hot. I will have to find a few pairs of sandals for the summer because I can't continue to wear my sneakers.

Spring Highlights

Spring evenings are the best because the temps are perfect for firepits. You know how I love my firepits.

We light the tiki torches and settle in to watch the fire burn as the sky gets darker and darker. It's so relaxing and enjoyable. We will try to get one more firepit in this weekend but there certainly aren't many cool evening left before summer temps force us to stop.

The other highlight of this spring was getting to see a bunch of family at my cousin's wedding. While I certainly didn't get to spend much time with them because I was in a lot of pain, I still really loved seeing them.

Spring Lowlights

Gypsy has been battling a nasty infection most of the spring. We had to change her food, which has been a bit of an odyssey itself, and we've been vigilant in an attempt to knock it out completely but it has been a long process.

Look at that cute little face!

We hope to get a clean bill of health in the next few weeks. She's such a sweet and loyal little companion, it's always hard to watch her struggle.

There is something so refreshing about spring. Somewhere between the greening vegetation, the flowers and the warming temps the world almost feels like it's resetting. I do love it.

Am I Brave Enough?

As June quickly approaches, I've been spending a fair amount of time thinking about this year's migraine awareness month. Each year I try to spend the month participating in some kind of awareness raising activities. I've done the blogging challenges and shared facts on social media. I've been trying to think of something different to do this year, just to change things up. 

The theme this year is, The Art of Migraine and Headache Management. The only idea I've come up with is to spend the entire month documenting the raw ugliness and everyday realities of living with chronic migraines on my personal Instagram account. 

This is a big deal for me for a couple of reasons. First, I don't really share the details of my struggle with many people in my life because I don't want to bring folks down and I want them to treat me as normal as possible when I actually feel well enough to go out and socialize. Second, I don't share much about my life with chronic migraines on my personal social media because I fear this information could some day be used as a reason for potential employers or insurance companies to discriminate against me. 

Everyone I know, knows that I have frequent migraines. Some people know that I have chronic migraines and also understands what that means. A handful of people know just how much it effects my life. Any lack of understanding on the part of my family and friends is mostly due to the amount of pretending I do, both in person and on social media.

When people ask the obligatory - "how are you?", I smile, gloss over the ugliness of the truth and change the subject. I respond honestly when people truly ask about how things are going or how I'm feeling. But I almost always follow it up with a positive platitude in an attempt to make us both feel more comfortable and to move the conversation in a different direction. Basically, if I'm out socializing with folks, I'm putting on a show. Because my chronic migraines (and other conditions) are invisible illnesses, people tend to believe what they see in me - the show I put on for them. 

I can usually put on a show for a short period of time. But what few people see is the preparations that went into the show, the struggle to get through it and crippling aftermath. Even the handful of people who get glimpses into the reality of the show never truly get to see the mental and emotional toll it takes. That's a personal hell that people can't know unless they have experienced it. 

I've been feeling increasingly brave about sharing more with my friends and family. In the past few months I've shared pictures of myself during a migraine on my personal Instagram account. It is this impulse to share some of these moments that inspired me to want to spend this migraine awareness month sharing the big, ugly, real picture of living with chronic migraines with them. 

Then I saw a statistic last week about the huge percentage of applicants who have been taken out of consideration for jobs because of what is on their social media and I got cold feet. That's my big fear - being discriminated against because of my chronic migraines. The reality is that, I've been out of work for so long because of my health that I would need to explain my employment gap to any potential employer. 

But

This fear is very real and runs deep inside me. And what's worse, it is unreasonable to think that this information could be used against me in the future. 

I want to reject this fear. I want to be brave and live more fully in my truth. I want to stop pretending out of fear. I want to live more authentically and not just as my alter ego - Migrainista. Am I brave enough? I think so. I'll keep you posted.

The Relationship Between Muscle Tension and Migraines

This has been a rough week so far. I've been battling a terrible migraine and now the muscle spasm in my neck, shoulders and upper back is redeveloping. In an effort to get on top of this spasm before it gets out of hand, I've started using the Thermacare Heat Wrap and am working hard to keep the area relaxed. 

Relaxing these muscles is a huge undertaking as they tense up in response to the migraine. The worse the pain the more of my upper body becomes tense and the harder it is to relax them. This tension seems to then make the pain worse, which makes the tension worse. 

I don't entirely understand the relationship between my muscle tension and my migraines but there is no doubt one exists. 

The first neurologist I saw for my migraines told me I had a lot of tension in these muscles. At the time, my migraines were constant - 27/7 migraine. He seemed certain that this tension was retriggering my migraines. Before one would resolve, another one would be triggered causing the constant migraine. He put me on the daily Baclofen (muscle relaxer), which has brought the frequency down to an average of 18 per month. I honestly think I would have lost my mind years ago if not for the Baclofen.

The migraine specialist I was seeing at Mayo insisted Baclofen is not a migraine drug, which is what prompted him to send me to physical medicine. It was this referral which lead to me getting the diagnosis of Fibromyalgia. As much as I was relieved to finally have some answers about the other non-migraine symptoms I was having, I was also frustrated that nobody seemed to be looking at the big picture. The truth is that before the Baclofen, I constantly had a migraine. The two ARE RELATED. 

The compartmentalization that can occur within these specialties can make it difficult to sort through any sort of relationship between symptoms or conditions. I'm feeling trapped in this crack in the system, unsure where to turn to get help; but in need of help as my muscle tension is becoming a bigger problem. Interestingly enough, I'm also seeing an increase in the severity of my migraines. 

Repeal and Replace Panic

Are any of you as worried as I am about this repeal and replace business? I was so relieved when the bill was pulled last time and Trump was pitching a fit, saying we are stuck with what we have for the foreseeable future. But here we are, several weeks later, and the house is getting ready to vote. I guess he can't see more than a week or two into the future at any given time.

Then I see something like this and my worry turns to a feeling of panic.



This man is a lawmakers!?!?!?!

The stakes are high and I'm troubled that none of the discussion are about what will bring down costs and provide better coverage. Instead all we hear is about the politics of it. How important it is to repeal and replace because that's what they were elected to do. How important it is to keep some popular parts of the ACA because constituents demand it.

Nobody has read the current bill, we have not had an opportunity to review and discuss it, we don't know what it will cost and what the effects will be. But it's in the republicans best political interest to say they repealed and replaced Obamacare even if millions of people lose coverage, costs go up and people with preexisting conditions get priced out. They don't care at all.

As far as I'm concerned both parties are guilty of not being honest about what it will take to provide affordable health care to everyone because the special interest have unfairly branded the notion of a single payer system in a way that makes it seem dangerous and anti-American.

The instability and the constant effort to take away what little bit of progress we have made in the healthcare arena is hard to cope with. The USA stands alone in making health care a privilege instead of a right. We spend more and are sicker than any other industrialized country. What will it take to turn the tide?

Another Doctor, Another Dehumanizing Experience

Well I tried a new primary care doctor yesterday and it didn't go well. Yet another dehumanizing experience. This doc wanted me to justify why I was taking the medications I take. I don't mind explaining who prescribed my medications, how it came about, what the medication does for me and how long I've been on them. I'm not on any opiates. All of the medications I'm currently on have a direct benefit to my quality of life. The dosage was dictated to me by specialists and I'm just looking to maintain the status quo. I have nothing to be ashamed of and nothing to hide so discussing them with a new doc is no problem.

But I took offense to her response to all of my medications. She told me that I'm not using any of my medications as they are designed. She said it is all outside of her comfort zone because she is an internist (the website had her listed as a family doc so I was surprised to learn that was incorrect) and when people are presenting with conditions that require that kind of care she likes to defer to specialists. 

I explained that all of these meds were originally prescribed by specialists and that I'm just looking to follow their plan and maintain the current level of benefit. She told me that she wants me to go back to see all the specialists so that she can develop a relationship with them and they can coordinate my care. I do actually want to see a migraine specialist again to tweak my rescue meds and begin a relationship so that when this new preventative hits the market in a few years I can give it a try. But there is zero benefit to going back to these other specialists because I'm currently on a treatment plan that works. The rest is up to me. 

She seriously wants me to spend hundreds of dollars and waste precious time and energy going to specialists so SHE can feel comfortable with my medications. If I go to all of them every year then I don't need her at all. They can just provide the prescriptions. But that not how this is supposed to work. If I don't need ongoing care I don't need the specialists anymore. I should be able to continue my care with my primary care doctor. 

Another thing she did that bothered me is that she asked me if I had filled out a record release form. I answered. Then a couple minutes later she asked again. I answered. Then she asked again. I answered. She continued to ask me this same questions over and over throughout our appointment. She clearly wasn't paying attention, which makes me wonder what else didn't she hear me say. Then I wonder what she put in my chart. Was that correct? Did she give me some negative label that will follow me any time I see a doc in that system?

Clearly, this is not the doctor for me. I'm trying to simplify my medical care not complicate it and spend more money on it. I just want to cry. I feel so defeated by the continued failure to find a good primary care doctor. What I wouldn't give to be rid of them entirely. I wish I didn't need medications or doctors. I wish I could just have a yearly exam and go on about my business. I wish there weren't so many shitty doctors. I wish the good ones weren't so hard to find. I wish we could have more say in our treatment. I wish there was a way to interview a doctor or otherwise determine if they would be a good fit prior to making an appointment.