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Wednesday, March 22, 2017

Preparing for a Big Weekend

A cousin of mine is getting married this weekend. Thankfully, it's a local wedding so we are able to attend. Still, there is much to do to prepare for the festivities and to prepare for house guests. I tried to do as much as I could in advance so that I could spend a fair amount of time just resting this week but much of what needs to be done, needs doing closer to their arrival.

I always enjoy seeing my extended family and I do love weddings. I would love to spend the weekend soaking in as much family and fun as possible. I wish I could press pause on my migraines and fibromyalgia so I could talk, dance, drink, eat and laugh all weekend. Unfortunately, chronic pain doesn't work like that.

I attended another cousin's wedding almost exactly one year ago and learned some important lessons that I hope will help me better navigate this year's event. 

Lesson 1: Bring sweaters. Last year I was so cold through the entire reception, which caused my muscles to become tense, which caused a tidal wave of pains, including a migraine. If I'm cold for more than a few minutes the result is pain 100% of the time. By the time we got through all the various courses of the meal I had been extremely cold for about 3 hours and we had to leave a short time after. This year I'm going to bring a long, thick sweater with me in case the reception hall is cold. I don't even care that I don't have one that matches my dress, I just can't deal with another dinner like that.

Lesson 2: Bring ear plugs. I don't know why I didn't think about this last year but boy did I rue the night. The reception hall was huge and we were up front, right by a giant bay of speakers. It was bad when they made announcements but it was horrible when the music started. Much too loud for this migraineur. This year I will be better prepared with ear plugs. 

Lesson 3: Eat before the reception. Hubby and I are vegetarians so we signed up for the vegetarian option on the RSPV. Last year the RSVP included a description of what the vegetarian meal was and it sounded wonderful. Unfortunately, between the super cold reception hall and the cold plates the meal was served on, our wonderful pasta dinner was cold by the time it reached us. We didn't eat much and I was pretty hungry when we went to bed. Yet another pathway to pain. This year we don't even know what the veg. dish will be so we are going to eat before to ensure we get to eat something good. 

Further preparations include:
- Bringing my own water bottle of room temp water so I don't have to deal with cold, iced water.
- Because of my foot pain, I had to search out a pair of flat, comfortable shoes. I wasn't able to find anything I would classify as formal that fit the comfortable requirement but I found something close enough. Comfortable was the #1 priority. I'm not about to spend the next 3 months recovering from a formal pair of shoes. Nobody I care about will judge me.
- Resting as much as I can in the days and hours leading up to the weekend.

Being so prepared, I'm left with space to just be excited. I'm excited to have my mom and sister staying with us. I'm excited to see a bunch of extended family. I'm excited to get dressed up and attend this wedding. I just hope my pain isn't too intrusive this weekend so I can have more fun than I was able to have last year. 

Wednesday, March 15, 2017

How Is It Only Wednesday?

This has been a tough week so far. I'm still struggling to adjust to the cruel and ridiculous time change. It blows my mind that we have collectively decided to just go along with this madness year after year. Surely we can come together and pass a law abolishing it altogether. Boom problem fixed. sigh

Anyway, during this adjustment our sweet little chihuahua, Gypsy, developed another UTI. She is prone to getting them from time to time and just for fun she got a very severe one yesterday. Between dealing with her symptoms and making the trip to the vet I was in a lot of pain.

Then, just before bed, she threw up. It was more vomit than I could have ever imagined a tiny dog like her could produce. So me and my migraine had to stay up and do some laundry. Then spent the rest of the night checking on Gypsy every couple hours to make sure she didn't need to go outside.

Poor little girl. Her need to snuggle increases when she isn't feeling well so we will be doing little else over the next day or two. That works out well because I need the recovery time as well.

I no longer have any sense of what time it is. My head is in a lot of pain and, despite being extremely fatigued, I can't seem to fall asleep.

At least Gypsy seems to be feeling better today. How is it only Wednesday!?!

Friday, March 10, 2017

Lent and the Unintended Migraine Trigger

I've never been a fan of lent. I won't bore you with all the reasons but I do want to talk about why it bothers me as a migraineur. It's all about the stench of rotting fish in the garbage and my sensitivity to smells. For those of you who don't know, one way many people observe lent (the time between ash Wednesday and Easter) is by eating fish on Fridays. The increased fish consumption in homes means there is suddenly all kinds of fish parts and fish soaked trash left to rot in garbage bins.

This is a real problem for people like me, who live with chronic migraines that are easily triggered by smells. It has been more of a problem since we moved into our current neighborhood about 3 years ago because so many people keep their garbage bins outside. Making matters worse, garbage gets collected here on Thursdays so the Friday fish has the whole week to rot and work up a terrible stench. This year has been especially bad because we've also had warmer than usual weather.

It has gotten so bad that I can't stand walking anywhere near what I'm calling the lent houses. That might not sound like a big deal but the daily walking I do with our dog is very important to both of us physically and mentally. Our neighborhood consists of one main road only a few blocks long, with two small cul-de-sacs. The lent houses are at the beginning and the end of our neighborhood, with our house near the middle. Our walking now consists of going a few houses in one direction, turning around and going the other direction a few houses and then back home.

The poor dog doesn't understand why I won't take her on a full walk and the decreased exercise leads to frustration. Even avoiding the worst of the stench I feel like the it follows me back inside the house. I don't know if it gets stuck in my nose or if some of it gets on me. Either way it takes a bit to shake the smell off.

The smell is so bad this year I find it impossible to believe that it doesn't bother people who have a regular sense of smell and no migraines. This year lent doesn't just bother me. Now I rue lent and can't wait for it to be over.

I guess I should just be glad the houses immediately surrounding our house do not do this and that the wind pushes the scent away from our house instead of towards it. At least I'm safe home. That's certainly a plus.

Wednesday, March 1, 2017

A Look Back at a Productive and Trying Winter

Winter wasn't very winter-like this year. We had a couple really cold snaps and a couple snow/ice events but otherwise it wasn't much of a winter. In fact, February has given us so many days in the 60s and 70s that the outdoor plants have already started to grow leaves and the grass is turning green again. It appears spring has already sprung in St. Louis. Let's take a quick look back at the winter that was.

Winter Favorites
My very favorite find of the winter (and of the year) was the Cloudstepper line of shoes by Clarks. I had spent a good portion of fall and early winter looking for shoes with enough cushion and support to help me best cope with the pain that continues to plague my poor feet. I researched online and I tried shoes on in stores. I was becoming increasingly frustrated by the "comfort" shoes brands for their lack of cushioning. Even the "diabetic" shoes brands (made specifically for people with diabetic nerve pain) were surprisingly stiff. They had support but not the softness my feet need.

The Clarks Cloudstepper have plenty of give in the shoe base and also in the inserts, which is what makes them far superior to any of the other shoes I tried on. After all the searching and shopping I had done it was such a relief to put my feet into these shoes. I got a couple pairs and will be going back this spring to get a summer sandal.
________________
Much like this past summer and fall, I've been watching plenty of Netflix and Amazon Prime. I found myself engrossed and entertained more than usual by one show in particular - The Moaning of Life with Karl Pilkington

You may have seen Karl before, he was on The Ricky Gervais Show and An Idiot Abroad. This latest show is one part documentary, one part travel show and one part opinion piece. It follows Karl as he explores what it means to be human, through his own nontraditional perspective. I think what I love so much about watching him is that I relate to him. He doesn't quite fit the norms of present day society. His thinking has a certain logic and simplicity that is fun to watch. The whole show is just Karl being Karl - encountering the world and commenting on it. Doesn't sound like much but it was wonderful!

I also really enjoyed The OA and would recommend that to all you Netflix streamers out there.

Winter successes
The big success story of the winter was finding some measure of relief from the sudden increased pain in my hands and feet with nortriptyline. I had hoped for more relief than I'm getting but any relief is better than none. I'm just so happy that I'm not in as bad of shape as I was prior to starting on this medication.

The other success was the unexpected discovery of the perfect picture to put over our fireplace. When we first moved in here 3 years ago, I put up a good-enough-picture as a place holder until I found one that was just right. The search was passive because I knew one day I would happen upon the right picture and that happened just earlier this month.
Van Gogh is all over our house. I'm a big fan of his work, never growing tired of looking at these paintings. This one was grand enough in size and setting to make it the perfect one for above the fireplace. Plus, I didn't already have this one on any other wall.

Winter failures
The house hunt ended in failure. We were not able to find the right place, in the right area, at the right price. I don't consider the entire ordeal a failure because the outcome was good, but it was unfortunate that we couldn't make it work.

Winter highlight
Spending time with hubby.
We got to spend a little more time together this past December than we usually get to. Plus the warmer February temps have helped us to get out and enjoy some time walking with our fur daughter, Gypsy.
We went to the track at the nearest high school so hubby could run and Gypsy and I could walk. She had a great time prancing around and hanging out on my lap to rest. She seemed to enjoy walking the track much more than the park because she wasn't anxiously looking to cover other dog scents with her own pee. She literally was prancing instead of walking and sniffing like she does at the park. Such fun to watch. Plus, the track was better for me to walk on than the cement and blacktop we walk on at the park.

Winter lowlight
Having our house on the market and house hunting sucked. Ultimately, I'm glad we did it because I feel like it was important to explore what it would like, financially, to make this move. On the surface it looked like we could save big money by relocating across the county but we discovered that wasn't the case. Still - it required a certain amount of time and energy and that was tough.

I've also spent a good deal of time suffering, as always, with my migraines.
Thankfully hubby is always willing to help out when I can't get up, and sweet little Gypsy is always by my side to comfort and protect me. Okay, so I don't actually need protection but she's not convinced of it. Better safe than sorry.

Welcome spring! I'm so glad you're here.

Tuesday, February 28, 2017

Taking the House Off the Market

Hubby and I have decided to take our house off the market and stay put. We were unable to find a house we loved, in the area we wanted to be, at a price that made sense for us. 
I'm glad to no longer have strangers coming through our house. People are not always respectful. One person left an oil stain on our driveway. Another one picked up and dropped an insect trap in our basement, somehow getting the super sticky glue onto the cement, walking through it and spreading it all around. A couple of them left lingering perfume. No good.

Plus, it'll be wonderful to no longer spend all that time and energy prepping the house and looking at houses. No more inconvenient showings. No packing or unpacked. None of this was migraine of fibro friendly. 

Life is returning to normal, now with the comfort of knowing we are presently in the optimal situation. 




Wednesday, February 22, 2017

Selling and Buying in a time of Chronic Pain

This selling/buying is not migraine or fibromyalgia friendly. Most days there are no new houses to look at. Inventory where we want relocate is very low and when something hits the market it is usually sold in 1 or 2 days, which means we have to go and look at a house as soon as it hits the market. We've also had a lot of people looking at our house. All of it is hard.

The house is in a pretty constant state of ready for a viewing but there are still several things that need to happen before each showing. The roughest is opening all the room darkening curtains, removing the blackout cover I have attached to the bedroom windows and removing/folding the furniture covers. Then upon return I have to replace everything so we are ready for regular living. All of this is a challenge for my fibromyalgia and migraine prone head.

The leaving is also difficult. Most of the time there is no place to really go with the dog, so we just drive around the corner and wait it out. Sometimes I walk around a bit with Gypsy to help her feel less anxious but mostly we just wait in the car. It's uncomfortable, I have to put up with the lights and there isn't much of anything to do. This, on top of the added tasks to get ready and settle back in, is rough on my easily triggered migraine head.

It's not so bad to do once every day or two but we had 5 scheduled leaves over this past long holiday weekend. We also looked at a potential houses. Boy was that rough. Even after taking yesterday off, I still haven't recovered from all that activity.

I'm struggling to manage my migraines and fibromyalgia through this process. It can't come to a close soon enough. Right now, it's really just about finding another house cause we have plenty of interest and even offers coming in but have yet been unable to settle things since we don't have a place to go. The whole thing is a giant hassle. I hope in the end it will have all been worth it.

Tuesday, February 14, 2017

To Try Botox Again or Not

So I've been going to a neurologist for the pain in my hands and feet. Because I also have chronic migraines the doc wants to know more about that too. He specifically asked if I had tried botox before. I explained that I had two rounds of injections, neither of them effective and I had a reaction to the 2nd round. He then started pushing for me try it again. He said it can take as much as 3 rounds to be effective.

I wasn't really in the right frame of mind to make a decision like this because I wasn't there to talk about my migraines and, while he is a neurologist, he is not a migraine specialist. But he went ahead and told his assistant to start the process with the insurance company.

The circumstances surrounding my first 2 rounds are a bit complicated. The first round was in the early months after it was approved by the FDA for use as a chronic migraine preventative. I received the injections from my migraine specialist at the Mayo Clinic. It was quick and painless but ineffective. Meantime, we're in the process of moving to St. Louis and my specialist tells me about a wonderful colleague of his he has known since medical school, who is also a migraine specialist in St. Louis. Some of you might know him as he has been active in the migraine community - Dr. Todd Schwedt.

I loved the idea of having a local migraine doc so I started going to him. It took several months to get the initial appointment and several more months to get the insurance company to agree to allow me to try it again. Of course, far too much time had passed for the first round to to help build up to a thearputic level with the 2nd round so we were basically starting all over again. This time it was administered by the resident and supervised by Dr. Schwedt. The whole thing took much longer and it was quite painful. I regret agreeing to let the resident do it.

Worst of all, I had a reaction to this 2nd round. For almost 3 months I constantly felt as though I was getting the flu whenever I would do anything. It was this extra layer of exhaustion that would kick in coupled with a low grade fever. I also got a red mark between my eyebrows that never went away.

Within a month after getting the 2nd round of injections, I received the terrible news that Dr. Schwedt was leaving Wash U/Barnes Jewish. Further investigation revealed that he had taken a job with the Mayo Clinic in Arizona and he was being replaced by two neurologist - neither one a migraine specialist. Between the reaction I had to the 2nd round and losing my migraine specialist I decided I was done with botox.

I do see how this might not have been a completely fair trial of botox. But I also didn't think it was worth doing more since I felt so lousy after that 2nd round. Even if it had been effective in helping with my migraines, which it hadn't, I'm not sure those side effects are worth a small decrease in my migraine frequency because it made even my migraine-free days difficult. I'm honestly not sure if I want to give it another try.

Right now I'm still working to figure things out with my hands and feet. I'm still feeling a bit overwhelmed by the additional pains and loss of functionality. I'm just not sure that I am up to dealing with additional limitations and side effects from the botox.

I've gone ahead and let the office help me investigate what the cost would be through my insurance. It's kinda expensive as you can imagine, plus I'll have an additional fee for administration of the injections.

Another misgiving I have is that this came solicited by the doctor. I don't know this doctor very well as we have only met twice and both times the main subject of our time together is the pain in my hands and feet. He is a neurologist and not a migraine specialist. He doesn't have much of my migraine history at all because he didn't inquire. He jumped rather quickly to asking about botox and seemed a bit pushy to get the process started. I am not convinced his motives are completely pure. And I certainly never would have chosen him to help me manage my migraines.

My gut is telling me something isn't right. I think the best thing to do is to listen to my gut on this one. I don't think I should let this guy give me botox injections. I don't think now is the right time to do a botox trial. But I'm still undecided about the notion of giving it a try again. Maybe it's something worth exploring further with a migraine specialist, another time.