Hubby and I have been taking a social ballroom dance class through community education. As you can imagine I was pretty intimidated at the thought of making a weekly commitment to show up and do something, never knowing when my migraines and/or fibromyalgia are going to take me down. Despite my anxiety about signing up, we went ahead and did it.
Turns out I've been able to manage it fairly well between planning ahead and my rescue medications (plus a little luck). Since it's just one hour, once a week, I've found that even if I'm having a bad day I can load up on my rescue meds and fake it for that one hour if I have to. The day after class is always designated for recuperation. More than a few times I went to class feeling nauseated and in pain, wanting nothing more than to be at home. But, by the end of class I'm always glad I went.
The great thing about taking this class is that we're learning something new together. When we're there we can only focus on the steps and dancing together. That means all our stresses and crap have take a back seat. Funny how just one hour of laughing and learning together can totally reset things. I almost always leave class with a more positive outlook and feeling like the things stressing me out are suddenly more manageable. Best of all, I feel closer to my hubby.
With 15 weeks of class behind us and only 1 week left, my feeling are mixed. As much as I've loved learning to dance with my husband and having a weekly micro-vacation from our stressors, the house build is pretty consuming. We don't have much time or energy to practice our steps so it is becoming difficult to remember the new stuff we learn. Plus, the further into class we get the more difficult the steps and the faster the pace. I just don't see how we can keep up.
The writing is on the wall; dance classes will have to be put on hold until we get moved and settled into our new home. Left to our own devices, hopefully we'll be able to at least retain what we've learned and be ready to start up again when the time is right.
Since I've not had any success from the preventative medications and since I've decided to get off the medication roller coaster, my migraine doc has suggested that I could benefit from the Mayo Clinic Pain Rehab program. This same suggestion was made by the pain clinic after I attended Mayo's 3 day fibromyalgia program.
This program is one of just a handful around the country. It's a 3 week long intensive, drug-free, multidisciplinary program that aims to retrain your brain's interpretation of pain. It basically would be a huge jump start to all the things I want to start doing to improve my life. I'm reasonably certain it would be a positive and worthwhile experience in a vacuum. For that reason I've been considering it for the past week.
Unfortunately, the problems would be numerous. First, 3 weeks is a very long time to be away from home for someone like me whose routine and rest time are so important to my ability to cope with ALL the pains and other symptoms of chronic migraines and fibromyalgia. This would be further complicated by 3 weeks of needing to be mentally and physically active from 8-5 every day. It was hard enough when I did the 3 day fibro program, I can't imagine keeping up that pace for 3 weeks. I keep picturing me in full flare, with a migraine and trying to learn and participate in a class.
On top of all that I would have to stay with my sister the whole time, which would be super stressful. She has two dogs with high pitch barks, who bark ALL THE TIME. She doesn't cook so her kitchen isn't set up for it. I would literally be on my own for every single meal. A tough proposition for a vegetarian who struggles with her weight. Not to mention it would be expensive. Plus, I feel like 3 weeks is just too long to impose on anyone.
The expectations of the program go beyond the daily 8-5. Each night we would be expected to be practice
the things we learn, going through meditations and such. We are supposed to be in a low stress environment during this time. There is no way to really make that happen unless I were to stay in a hotel but I can't afford to stay in a hotel for 3 weeks. Not going to happen.
As much as I would love to attend I just don't see how I can truly make the most of it and gain all the benefits because of these barriers. Guess I'll just stick with my original plan and do these things on my own.
As my husband and I have been picking out various options for our new house I've come to realize my migraines and I run contrary to conventional wisdom. We've passed on a whole lot of "desirable" options on account of my deep pragmatism and sensitivities.
In the bathroom we could have upgraded to a garden tub and separate shower. This would have also given us a big window above the tub. Not wanting the big bright window in the bathroom, which I would just need to cover anyway, we went ahead and opted for the standard tub/shower combo, which means we also get a linen closet. Plus, we kept the standard one piece tub/shower instead of upgrading to tile. These one piece fiberglass and plastic tubs are SO MUCH easier to clean. Tile may have a nice aesthetic but it's a constant battle to keep the mold out of the grout. No thanks.
In the kitchen we passed on the conventional wisdom that says cherry cabinets are the high end choice. That cherry color is hard to match with other decor and, frankly, I just prefer brown or black. They also offered us a upgrade to a beautiful hanging light fixture right above the sink, but that puts the light just above my eyes creating a migraine nightmare. The standard kitchen would them provide a built in microwave above the stove. That's what we have now and I hate it. As nice as it is to have the microwave off the counter whenever I cook, which is all the time, the microwave gets all wet with steam and the venting off the microwave never works right. Instead I opted for a simple hood, which was actually a savings.
We then had the option to put bay windows in the dining room and the master bedroom but opted instead for the standard sliding glass door in the dining room and the two smaller windows in the master bedroom. Bay windows let in more light and would just be so much harder and more expensive to cover up. The daily battle I have with extreme light sensitivity makes covering the windows a must. They will be covered 95% of the time so bay windows would just be craziness.
We may not be making popular choices here but we will have a practical, migraine friendly home and that is exciting to me.
Like most people with migraines I am very sensitive to lights. Even as a child with episodic migraines I always preferred dim lights. This sensitivity has only intensified since my migraines went chronic. I take lots of precautions to help me cope.
-I wear sunglasses even on cloudy days
-I wear loose fitted hats to shield my eyes
-I put room darkening curtains up so I can control how much sunshine comes in
-I don't make plans that include me being outside for extended periods of time during the day
In an effort to better cope, I've been wanting to make a change in my sunglasses. Right now, the only pair that I can wear for any length of time is super old and is falling apart. Making matters worse the lenses are not very dark and are not very big. The only reason why I continue to wear them at all is because they are the only pair I've ever owned that doesn't pinch my head, triggering a migraine.
Having finally reached the point where I don't want to deal with the old pair anymore AND since I no longer care about the aesthetic of the fashionable sunglasses that are everywhere I decided to get a pair of those wrap around sunglasses that are made to be worn over prescription glasses. A pair like these:
My grandpa used to wear something like this back in the day. Other than the obvious full coverage that these offer, I imagine the ear pieces will be more gentle as they are made to fit over another pair of glasses. The trouble is that I have yet to find them in stores. I know I can find them on Amazon.com but I would much rather buy them someplace where I can try them on.
What kind of shades do you wear? Have you ever seen these? I don't suppose you remember where? Have you ever tried them yourself?
I've just returned home from a long weekend up north to visit my mom and see my migraine doc. A trip which in the past used to be all in the same place - Rochester Minnesota. Just last month my mom moved to LaCrosse Wisconsin for her job. The two cities are actually fairly close at around 75 miles but it's just far enough to make going to Rochester a challenge for me.
The thing is, I love Rochester. I grew up in Rochester. I've watched it grow into an amazing little city. It is the place where all my dear old friends live. It is the place where I became me. I will never know or love another city the way I do Rochester. I thought I would always be going back to visit because that's where my mom and sister lived.
While I was up there I did travel over to Rochester for my Mayo appointment and was able to have lunch with a friend. I then needed to return to LaCrosse because I had reached my activity limit for the day. Taking one day trip to Rochester is really all that I can justify during a long weekend where 2 days are spent just traveling north and returning home. So basically I will only ever be able to see 1 or 2 friends, once a year when we make our summer visit north.
The whole situation makes me very sad. I feel as though the distance between me and my friends just got greater and that I'm losing this connection with my past. I miss my peeps. I miss Rochester. I wish it didn't have to be this way.
Adding additional emotions to this past weekend was the appointment with my migraine doc. As you may remember, I have decided to stop trying various preventative medications. This was the first chance I had to talk with my doc about this. He was in agreement that taking some time to get my whole self in better shape was a good idea. We had a really nice long chat about everything from trying pot to how far away migraine specific preventatives are (decades).
I left our time together feeling both relieved by my doc's affirmations that I'm doing the right thing and a bit scared that I'm kind of on my own now. More than ever I need to find a good primary care doc so that I can continue to get my needed rescue meds and muscle relaxers. Then the task of finding good alternative providers begins.
I need to gain weight. What I really want is to put about 20 pounds on but I would settle for 10. The problem: I'm ALWAYS nauseated. It is this nausea that slowly robbed me of a pound here and a pound there over the past 7 years. I often will be really hungry and then when I begin eating my nausea will kick up and I'm not able to eat as much as I want. Complicating matters, I eat really healthy food, all of which are low in calories. My body loves these healthy foods and has actually begun rejecting the more processed, sugary, crap.
Over the years I've tried a couple things to get my weight up but have not had much luck. Just yesterday I began feeling a renewed sense of urgency on this matter. I need to find a way to make this happen. Here are the things I'm currently doing to add calories to my diet:
- I put cheese on almost everything I eat (not breakfast)
- I try to drink some calories by adding juice to my breakfast
- I snack on Wheat Thins
- I try to have a little dessert with both lunch and dinner
My husband suggests that I eat a big snack close to bedtime and I'm going to give that a try. But I'm also open to any suggestions you may have. Have any of you struggled to gain weight? Have any of you had any luck gaining?
You may have seen all the attention this YouTube video has received over the past few weeks:
The video gives a name to a common phenomena: Bitchy Resting Face (BRF). For some people their face can naturally look angry or sad when in a state of rest. Having one of these faces can lead people to misunderstand you and judge you.
I say all of this because I believe my chronic pain has given me a BRF.
As you can see in this photo I have several features of BRF:
- the furrowed brow
- the down-turned mouth
- the angry lines of my eye brows
- the general droopy nature of my resting face
Now the general droopy nature of my resting face is mostly attributable to my age but the rest of these features can be directly linked to my chronic migraines and fibromyalgia. The inside of my eye brows dropped the last time I had medical Botox. That was well over a year ago and even though the Botox has long since worn off, my brow remains lower than it used to be creating a sharper slope/angrier look. Making things worse, my body is always in pain so unless I'm putting effort into looking "normal" my face is reflecting the pain I'm in. That's when my brow furrows and my mouth turns downward. It just happens.
I've decided that I don't like calling it BRF because this was never my resting face before. Instead I'll call it my Migraine Resting Face (MRF). Has MRF happened to anyone else out there?
My mind is consumed with thoughts of our housing situation. We've been house hunting for a while now without any luck. I was about at the end of my rope with the whole thing when my husband did some outside of the box thinking and found a neighborhood of new construction in our price range. The only catch, it is not in the area of the county we wanted to live. Somehow sitting in the model home, with the perfect ranch layout that had everything we wanted in it, surrounded by that new home smell, we found ourselves willing to make the compromise.
I can't believe we can actually afford to build a new home for the same price as the old homes we were looking at. Even though we have signed a purchase agreement, put some money down and are knee deep in our mortgage approval process, it still feels like a dream. I know once our mortgage is approved it will feel more official.
In the meantime it is constantly on my mind. I'm thinking about covering the windows, what style I want to decorate with, how I will place the furniture, what colors I might want to paint, wondering what our neighbors will be like...you get the idea. My mind is so busy with these thoughts, along with the anticipation of finally planting ourselves long-term in a home, it's keeping me up at night. My sleep is pretty easily interrupted and my level of excitement on this matter is intense - a bad combination.
I know it's gotten bad because I'm starting to feel jealous of Gypsy and her amazing ability to sleep anytime, anywhere, in any old position. She makes it look so easy. Not to mention my body is cooperating even less than normal. Everything is just a little harder than normal.
With a long construction process in front of us I sure hope my mind will soon calm enough to allow me more sleep. Otherwise this is going to be a VERY LONG 5 months.
Dental care has become tricky business for me since the onset of my chronic migraines. Okay, I need to back up a bit here. See I had the same dentist in my hometown of Rochester, MN my entire life. The same dentist, the same hygienist, the same great dental care in a very small private practice. Dental care was never a worry. Shortly after my migraines went chronic, hubby and I moved far away, and then moved again, and then moved again, and then moved again.
Each move forced me to seek my dental care from absolute strangers. I had no way to know who was any good and ended up just randomly picking dentists. It never worked out so I never went to the same dentist twice.
Each move found me deeper into my chronic migraines. I was constantly trying new preventative medications and taking muscle relaxers and my rescue meds. Between all these pills my mouth became a very dry place and cavities followed. I would show up at a dental office and tell them about my migraines and all the medications and how crazy dry my mouth was. The trouble was that during the day, on a day when I'm not taking rescue meds, my mouth isn't terribly dry. Most of my preventative meds along with my muscle relaxers were taken at night so that's when most of the damage and discomfort was occurring.
The dentist and the hygienist would look in my mouth and see a pretty normal environment. I would then get the condescending talk about how I need to cut back on sugar and brush better. Of course, they made these blanket suggestions without ever having conversations with me about my diet or brushing habits, where they could have actually learned that this clearly wasn't the issue.
I would ask specifically what I could do about the dry mouth and then I would hear them whispering behind me about how my mouth isn't dry. They obviously didn't believe me and just brushed off my concerns. Meanwhile, they're shining that obnoxious light in my face, scraping with too much force and generally not taking my pleas for gentle care into consideration. Hello migraine.
It was like something out of Little Shop of Horrors:
So here is where things get kinda cool.
I was at the dentist this past December. At the time I didn't have dental insurance but did have 3 or 4 small cavities that, because I wasn't insured, the dentist said he wanted to watch but would probably need to fill next time. In February, as part of my efforts to cut back on the chemicals I use, I started using a remineralizing toothpaste and activated charcoal instead of store bought toothpaste. I used them for about 2 months but ended up stopping because the brown color of the remineralizing toothpaste combined with my electric toothbrush made for a messy sink.
In June, armed with dental insurance, I found a new dentist. First off, let me just say that this is the best dentist and dental office I've ever seen. Instead of those horrible bright lights they used small concentrated lights attached to a magnifying eye gear sort of like surgeons use. They gave me big shades to wear that blocked light from all directions while they were using their lights in my mouth. They were super gentle and respectful of my pain. Best of all they believed me when I spoke about my dry mouth. Both the dentist and the hygienist took the time to really talk with me about exactly what I'm doing and how I might be able to manage my symptoms betters. It was a conversation, a partnership. I never knew dental care could be this great.
The old dental office failed to send my x-rays from December but since I was newly insured the new dentist was able to take new ones. Much to my surprise the new x-rays didn't show any signs of cavities. If I hadn't seen both sets of x-rays with my own eyes I would have just figured the first dentist was lying about my cavities. That just wasn't the case. Now I can't prove that the remineralizing toothpaste and activated charcoal took care of my cavities but that was literally the only difference in my dental routine.
I'm thrilled to have found such a great dentist and relieved to have found this remineralizing toothpaste that, hopefully, will continue to help me avoid future cavities. I've decided to start using it once a week as a prophylactic.
If you've been following me for the last several months you know that my daily battle with chronic migraines and fibromyalgia has a new nemesis: Express Scripts. They have made filling my prescriptions needlessly complicated and endlessly frustrating Not to mention they have managed to screw up every single step of the way. I'm grinding my teeth and shaking my fist just thinking about it.
Surprise, surprise, they have managed to take their incompetence to a whole new level. They sent me a letter listing the medications I have filled in the approximate 3 months that they have been my prescription provider. The letter then went on to make the observation that I have migraines and suggested that I think about discussing some preventative medications with my doctor.
As if it wasn't bad enough that this Johnny-come-lately has the stones to make this incredibly uninformed suggestion about my medical care, the list of medications I had filled with them included two migraine preventative medications. They don't even know which medications are used to prevent migraines!!
HEY EXPRESS SCRIPTS,
Clearly, just filling prescriptions is more complicated than you can manage. You certainly have no role to play in my medical care! Stay the f*&% out of it!
The word vacation is supposed to evoke images of beautiful locations, amazing meals, fun and relaxation. With limitless possibilities, the vacation is supposed to be the regularly scheduled reward for all the hard work of daily life. That image of vacation sounds like something everyone could benefit from.
The thing is, I can't say that I've ever been on a vacation like that. Vacations are stressful, and that's before you ever even think about adding the many complicating factors imposed by chronic migraines. You have to pack everything you will need and drag it along with you. You have to either drive or fly to some location. You have to pay out the nose to stay in some hotel and to eat every meal out. You are living out of a suitcase. You are on vacation so you have to go around and have fun - let's hope the activities you choose are fun because that is the expectation.
I remember seeing a news report recently that cited the anticipation of a vacation as more enjoyable than the vacation itself. The actual vacation has little hope of living up to the crazy expectations imposed on us by the travel industry and ourselves. The brochures, the advertisements, the websites, facebook photos of our "friend's" trip...they all paint a picture of perfection. A world where nobody gets food poisoning, luggage is never lost, bed bugs don't exist, a tiny bottle of water doesn't cost $5, you know, perfect.
Since the onset of my chronic migraines my husband and I have been on three short vacations in addition to several trips to visit family. What I've come to realize is that I no longer enjoy vacations. I hate being away from home because traveling ALWAYS destroys my routine. Everything becomes harder; sleeping, eating (further complicated by being a vegetarian), staying hydrated, pacing myself, treating my migraines and managing the plethora of symptoms. I don't have the energy to make the most out of any vacation because I can only do so much in one day. Frankly, I just can't justify the expense of vacationing in my condition.
Traveling to visit family is different. It's one of those things that needs to be done. My mom and sister live about an eight hour drive from here and so travel we must. Here are some of the things I do to try to enjoy myself as much as possible on these trips:
1. Take our dog Gypsy with us. My mom's house is a super dog friendly place so thankfully she is welcome. Having her around is a good stress reliever and actually helps me to maintain some sense of routine. 2. Planning time to see old friends. Talk about doing something great for the soul. Nothing like sitting in front of dear old friends to make a gal feel great. 3. Remembering that there is great fun in some really simple activities can help me to avoid getting involved in things that will overtax me. Sitting around and talking, playing games, having a fire pit, a meal...these are good ways to have quality fun with loved ones. Suggesting these kinds of activities usually works. 4. Always remember to take all my migraine gear; medications, hat, shades, comfortable clothes, water bottle, etc. Thankfully my mom makes provisions for me as well, like room darkening curtains she puts up before we arrive.
I'm still holding onto a hope that I'll get better at managing my symptoms in general and that traveling won't be so difficult in years to come.
We're house hunting. I love house hunting. I love looking at pictures online, going into homes, seeing different decorating styles and trying to picture my family in the various homes. We've been waiting and saving to buy another house for years. Between all the moving around and living in crap apartments with even crappier neighbors has just made the hunting feel even sweeter.
Surprise, surprise, my chronic migraines and fibromyalgia have sucked a lot of fun out of the process. Here are some of the complicating factors:
1. We are looking to buy a house in South St Louis County, which is about a 30 minute drive from our present location so we are spending a great deal of time on the road just getting to that part of town and then tooling around to see the houses. The driving about is hard on my neck, which triggers my head. Plus, there is a lot of sunshine and heat to contend with this time of year. 2. While I enjoy going in the houses and such, we've seen a lot of stinky houses. Sometimes I'm the only one who can smell the underlying cat pee, which makes me feel a little crazy. Some of the smelly houses have been very overt and then I'm just sad that we're missing out on a great house because the present homeowners are heavy smokers or have not addressed the stinky urine soaked carpets/pads/subflooring. 3. The stress of the rising interest rates and huge increase in homebuyers have made me more sensitive to all my triggers.
It's been a tough month of house hunting. Especially after we lost out on a bid for the perfect house over the weekend. At this point I'm over it. House hunting can be fun but a long house hunt is just not good for this Migrainista. I need it to come to an end so we can move forward in the buying process. Fingers crossed that we'll find the perfect place tomorrow.
I had a chronic migraine first during the month of June: my first migraine IN a dream. I do frequently fall asleep with migraine pain, wake up with migraine pain, heck, I'm sure I've even had pain while dreaming. But I had never actually dreamed that I was having the migraine. It was so real. I was experiencing the pain, aware of the pain and it played a big role in the activity of the dream just as it does in real life.
Now I know, migraines are such a big part of my life it shouldn't have been as jarring or surprising to dream that I was having a migraine. But it was.
Normally, sleep and dreams are a bit of an escape for me. A time during which I don't have any awareness or thoughts of chronic pain. A time filled with hope that the next day won't be as bad. A time to do really cool stuff like fly around beautiful buildings and see the world from a bird's perspective. Having that time invaded by migraines was just unsettling.
So far I've only had the one dream migraine. Now if I can convince my brain to never do that to me again, I'll be a happy camper.