Thanks and Hopes

This year has certainly been interesting. As with every year, I've been up and down the roller coaster of chronic pain. But this year I started sharing my journey in this blog. The process of writing and the support I've received from my wonderful followers has been therapeutic. Most people in my life just can't understand what I'm going through, which is not at all a commentary on them. The experience of living with pain is unique and complicated. There is a good amount of ugliness to it and it is so very difficult to share some of that with the healthy. Thank you for reading and sharing your experiences and thoughts with me!

I don't know what the year ahead will hold for me and my pain but I've been thinking about what kind of changes I want to make in 2011.

I want to get the hang of meditation. I think it could have a big impact on my sense of being out of control and the stress and anxiety that are a big part of my daily life.

I want to do more stuff with my husband. He works very hard and very long hours. I think having more little adventures would be a positive thing for us as humans and for us as a couple.

I want to gain weight. I don't know how much control I'll have over this but I hope my appetite remains where it is right now.

And I want to read more. I have several books that I want to read but I tend to do more watching than reading because it requires less of me during the hard days.

What are you hoping to do more of or less of in 2011?

Oh So Sweet!

My favorite part about having had fewer migraines in December is the effect it is had on my appetite. As you may already know, I'm a small woman who has lost a fair amount of weight as a result of the nausea that accompanies my migraines. Weight that I did NOT want to lose. Having had fewer migraines in the 2nd half of the month has finally caught up with my internal system and my appetite is up and running.

I'm eating more all around and I've begun craving sweet potato pie almost constantly. I have a really fabulous recipe and have already made 3 this month (since getting home from Minnesota)and am making 4th right now. I can't get enough and I certainly don't want to stop myself. Yum!! It's getting pretty tough to enjoy the smell without being able to also enjoy the taste. I wish it didn't take so long to prepare, cook and cool.

Leading up to Christmas the sweet potatoes are in great shape and are significantly cheaper. They have since gone back up in price and in quantity but for now they seem to still be in pretty good shape. I fully intend to continue to take advantage of my appetite and the beautiful sweet potatoes to make as many pies as possible until they start getting small and old.

I'm having a good deal of fun indulging in all kinds of holiday foods in addition to the sweet potato pies. Hopefully I'll continue to have this great relationship with food in 2011. It is oh so sweet!

Anxious?

This period of time between Christmas and New Year's tends to be kind of dull. The shows are all in rerun. The Christmas decorations are coming down. And the new year has yet to begin.

I haven't yet had a chance to watch all of my Christmas movies so I'll use this year's awkward last week to do that. Generally speaking I'm not one to make new year resolutions but I do like to take stock this time of year and set some personal goals. That will occupy some of my time too.

I almost hate to say anything but...I feel like the tide may be turning with my migraines. At the end of November and into the first part of December I didn't have the use of my migraine rescue. I didn't treat some of my migraines at all and then I was able to treat a handful of them with the Tylenol 3 until I saw Dr Garza at Mayo. I had no intention after my visits with him of starting the new plan of limiting my rescue medication to 9 days a month until I returned home. After all I still needed to take care of my mom and make the long drive home. As time ticked by I wasn't really having horrible migraines very often so I wasn't needing the medication.

Now with just a few days left in the month I am finding that I was able to stay within that number this month. There has been plenty of days when I thought I would have to take my rescue meds but I was able to manage without so I didn't. And the closer I get to the end of the month the more motivated I am to keep the number of rescue meds I take to fewer than 9. It is now clear that I will achieve this goal and I am thrilled about it!

Even more exciting is the possibility that this may be what the months ahead hold. I may actually be able to regain control over my migraines. I'm almost afraid to put this out there - afraid that even suggesting it will chase it away. But I have seen my body create problems for me and then change quickly when a cause is discovered, even if treatment has not been administered.

For example, in the fall of 2009 after years of irregular periods I had a period that went on for about 6 weeks so I made an appointment with my GYN. She ordered an ultrasound and found a giant cyst on my right ovary. She wanted to wait a couple months and look at it again to see if it would resolve on it's own. It didn't, so in January she had to go in and remove it. The thing is that as soon as we discovered the cyst and knew what was going on, but before the actual procedure was performed, my period corrected itself and was suddenly regular for the first time in years. The cyst was so big the doc said it had to have been growing for years.

My body has done this sort of thing several times before. I'll have a sudden change in what is normal and it persists until the cause is discovered and then it just changes - before I've even had a chance to address the issue.

I don't remember if I ever went into what Mayo thinks was causing the chest tightness and such. They think it was an anxiety response. I don't consider myself an anxious person and my friends (who work in mental health) actually had the same thought too. Of course they have not seen much of me since the migraines got out of control because that was also around the time I moved so far away. I've certainly had much more stress since things changed and I've certainly developed some unreasonable fears such as flying and riding the metro over the Potomac River. On the other hand I don't have any trouble going out in the world to shop, attend appointments, or even socialize.

Dr. Garza at Mayo's headache clinic said that often people with these kinds of chronic migraines will also have depression, anxiety disorders, chronic fatigue or fibromyalgia. I had to ask if he thought it was a possible cause of my migraines becoming out of control or if he thought it was the result of. He told me that the relationship is not well understood at all, it has simply been observed and documented that they often accompany one another. He wasn't sure that the anxiety I was experiencing was something mild enough that I could control with meditation, breathing and such, or if it would need to be addressed with medication. He was going to consult with someone else and make recommendations.

I've been thinking a lot about it since that conversation and I can see how I could be anxious. I think the discrepancy is simply one of language. I wasn't using anxious to describe how I was feeling. Instead I was stressed, or overwhelmed, or on edge, or in a migraine fog. And while all of those may have been true my research tells me that I could easily have used the word anxious instead of, or in addition to. I have almost all the risk factors and certainly identify with some of the symptoms.

Nothing is certain but I am very hopeful and excited for the year ahead.

With Christmas just around the corner I'm soaking up all my favorite holiday flicks. Here are my must watch holiday favorites.

How The Grinch Stole Christmas: I love this holiday classic so long as it is the book or this short animated version. As much as I would love to have this in my DVD collection I won't pay $24.99 for less than 30 minutes of show. Instead I make sure to catch it on network TV, commercials and all.

A Charlie Brown Christmas is the only other animated classic I take in each year. Luckily I got this one for Christmas one year so I can watch it at my leisure.

A Christmas Story: This movie is good clean fun. I used to have it on VHS but it was destroyed long ago. TBS usually will runs it back to back for 24 hours on Christmas day but since we don't have cable I'll have to order it from Netflix.

The original Home Alone is another great holiday flick. I don't know that it can be classified as a classic but I sure enjoy watching it around this time.
Jingle All The Way: Now I'll go ahead and admit that this is not a great movie but for some reason I like it. Well I like the first hour or so of it. I like it for two reasons. First it was filmed in Minneapolis an area I'm very familiar with. Second, Phil Hartman's character is fabulous. He doesn't have a big part but he is seen throughout it.

The Red Shoes is an old movie but I don't know that it would be considered a classic. It certainly isn't a Christmas movie but it is something that I saw several years in a row on Christmas day when I was very young so it feels like a holiday to movie to me. It is sort of weird and a little dark - maybe this is why I like weird and dark movies. Moulin Rouge: Okay this one isn't a Christmas movie either but it is my absolute favorite movie ever made. I limit myself to only viewing it once a year so I don't grow tired of it and I choose to watch it around Christmas or the New Year because that is when I first got it on DVD.

Gosh, that's a lot of viewing. I better get started here.

How about you? What movies do you like to watch this time of year?

Decorations

Well I finally managed to get some Christmas decorations up. The goal was to get them up before I left for Minnesota but since I ended up leaving early, somewhat unexpectedly, that just didn't happen.

The task wasn't very difficult since we don't have much space after closing the storage unit. There is no room for the big fake tree that needs to be assembled, fluffed and decorated. No long strings of lights to untangle. These tasks usually takes about 2 hours. I did find a great small fake tree super cheap at the antique store nearby that I decorated with red and silver mini-balls. I unwrapped a couple Santa figurines to set on stuff and stocked the kitchen with holiday towels and pot holders.

I'm actually sort of glad we don't have enough room right now for all the usual decorations. Partly because Christmas is only a week away so I would only be able to enjoy them for 2 weeks. It is a lot of work for such a short period of time. I'm also sort of glad because I'm still recovering from my trip and I know I wouldn't have been able to manage all of it. Things have worked out for the best.

Don't get me wrong, I absolutely LOVE Christmas time. I love it all: carols, lights, smells, baking, eating, decorations, cards, pictures, people gathering. This time of year always makes me long to live closer to my friends and family. But these days stuff is just harder. I can't do as much as I would like to. I never know how I'll feel so plans become a source of stress.

Since my husband and I live so far away from our families and friends we don't have any social engagements to even think about. The migrainista in me is actually a bit relieved that we don't have to deal with it yet. But the social woman in me greatly misses it.

Back Home

I arrived back home today after 3 days on the road. Between the bad weather and the more unstable nature of my body the trip needed to be broken down into 3 days instead of the 2 it took to drive out there. My neck and shoulders are very sore but fortunately there is no migraine yet today.

I'm feeling relieved to be back home with my husband and dog. Looks like the snow followed me here - not what I wanted to see. I'm so sick of snow and cold.

The longer I'm home the more sleepy I'm becoming. Part of me just wants to get stuff done around here things have gotten rather messy since I've been away but the rest of me just wants to nap. My brain is already starting to slow way down, which means I really should stop blogging.

I'll be back to blogging regularly now that I'm back at home. How are you all doing?

Another Delay

Well it finally stopped snowing in the middle of the night. Looks like between here and Chicago the weather is find today and tomorrow. Enough for clean up today and leaving tomorrow. The trouble is that once you round Lake Michigan you start getting lake effect snows across Indiana. Then you are okay again as you near Toledo but once you round Lake Erie you again are looking at lake effect snows into Cleveland and beyond. Tricky, tricky.

I hate to put this off another day but along I 80 from Indiana through Ohio the land is very flat and the forecast is calling for both snow (90% chance) and wind. I've lived in Minnesota long enough to know that even a light snow with wind can be super dangerous on these long flat interstates. Better to be safe and wait another day.

Maybe I can squeeze in another visit or two with friends.

Boy I sure do miss my husband and dog. Darn snow *sigh*

The Best Laid Plans

Well I had hoped to leave Rochester tomorrow morning but the snow has been falling since last night and the wind is picking up more and more as the afternoon wears on. Sounds like it will continue for the rest of the day and into the night. Bummer. I was counting on the early week estimate of 1 to 2 inches tops to pan out - the best laid plans.

Fortunately this extra time will allow me to reschedule my lunch date with a friend today for tomorrow night. It is so darn hard to be so far away from all the people I love here in Rochester so much of the year and between being crazy busy taking care of things with my mom and her dogs and not feeling good at all I just haven't been able to see even 1/2 the people I wanted to. Such is life.

I'm very thankful that I was able to make so much progress at Mayo while I was here and I am very anxious to get back home to my husband and my dog. I've missed them terribly. There is just the small matter of the thousand mile journey back home. Hopefully the weather will cooperate.

The New Plan

I got a new plan from Dr Garza yesterday afternoon. He has given me specific instructions on how frequently I can take each of my rescue medications and he prescribed Amitriptyline as the preventative. One of the possible side effects is causing hunger, which would really be wonderful as I am presently under weight.

We have decided that my chest symptoms are most likely the result of anxiety. What's so interesting about this is that I was not at all aware that I was experiencing anxiety - and enough of it that it is causing some pretty dramatic physical symptoms. Dr Garza explained that it is a medical condition like any other where you feel the symptoms of anxiety even without a stimulus. It makes more sense now and I've been thinking to myself that perhaps the early sign of this anxiety creeping into my life is all the spasms in my muscles and tensions in my neck. The doc is going to seek the opinion of someone in psychiatry to see if I should be medicated for this or if I may just respond to mediation and such.

Overall I'm very pleased with the new plan and am hopeful that relief may be on the way by March. I'll wait until I get back home before starting the new plan. There is still so much going on here and I have that long drive home.

Ode to Dr Garza

I got the most touching phone call on Monday. I had taken my mom to PT and walked next door to the coffee shop Dunn Bros. where I warmed myself by a fire with some hot tea. I sat thinking about about situation. My insurance company said they would not cover botox despite the FDA approval for chronic migraines and it sparked more fears about the future of my coverage. I depend so heavily on my insurance company that the mere thought of losing it is unbearable. As I sat in a calm worry my phone rang.

It was the Mayo neuro. He got my message about the no from my insurance company and he was mad. We had a short conversation about what happened when I called and then he announced that he had some time right now and he would like to call them and "see if I can find a human being."

I wanted to cry.

I never felt like I had a true ally in a doctor before. I never felt like my doctor was so invested and dedicated to my health.

He called me later that afternoon to report that despite spending a 1/2 hour (!) on the phone with my insurance company he was not able to talk sense into them. He spent a 1/2 hour of his time advocating for me. Ladies and gentlemen, presenting my new favorite person - Dr Garza! *cheers and applause* I don't even care that botox is still a no. He says there is still plenty we can do.

I have my follow up with him this afternoon - during which time I will do everything I can to see if he will manage my care from a distance. Wish me luck.

A Monday

Minnesota in December is always an adventure. It's so cold and over the weekend we got about 9 inches of snow. I may have grown up with these bitter cold winters but it seems to get harder and harder to cope with as I get older. BRRR!

My driver side door window froze in place on Friday and then fell into the door. Now it moves up and down but it is clearly not in the right place and so it doesn't close entirely. Thankfully my mom has a garage and offered to let me park there and put her car on the street so when the snow fell it didn't fall inside my car. I have an appointment with the VW people later today - hopefully it won't be an expensive fix.
In the meantime my mom starts PT today. We still don't know how many times a day/week she'll need to go. I really want to make my way up to the Mall of America to go to the Gap Body like I tried to do over the summer when I was here.

Today I'm also expecting to hear from my doc that I can start up the Imitrex again. I'm hopeful for a good day. And I hope that your day is good too :)

Lots of New Info

I got to see the Mayo headache guy this morning and so glad I did. Right away he told me that if I'm still feeling tightness and such in my chest the cause cannot be the triptans. He doesn't know what it is so he wanted me to see someone in internal medicine and if it is determined that my heart is okay I should be able to continue taking the Imitrex. I was able to get an appointment with IM this morning as well.

He was able to determine the problem was not with my lungs and sent me for a stress test to induce the pain and see watch what happens to my heart. As luck would have it, I was able to have that done today too. The tech indicated that things looked pretty normal so I'm very optimistic that I'll be able to start treating my migraines again.

The question remains - what is going on then. They wondered aloud if this was an anxiety response and I'm afraid I wasn't much help. I could tell them that I've been very stressed and anxious since this all started because of the traveling and needing to feel okay to take care of my mom and her dogs. I don't think I felt anxious before...can you have a panic attack without knowing it? Well, if that is what is going on here then at least it sounds easy to treat.

What was most interesting about the appointment is the revelation that I have not been taking my preventative correctly. He says that not only was the dosage not adequate but he said none of the preventative meds will work when I'm taking so many rescue meds. Have I seriously spent years of my life in pain and trying all kinds of preventatives in a manner that was ineffective? Years!

He suggested botox as a preventative because it works faster than the meds. Unfortunately my insurance said no to that idea.

I don't know what to do with that. Maybe it is time for a new neuro back home. Maybe this guy can be my doc...can I make that work from this distance?

sigh

I'm too tired, sore and in pain right now to give it much attention.

The Struggle Continues

My mom was discharged from the hospital late this morning and is back home napping. The Tylenol 3 kept me functioning yesterday and today it's not working as well. But my neuro only gave me 10 of these pills, which wouldn't last even if it only took one pill to get me through the day. And that certainly is not the case.

I did get a call from the Mayo neuro's office a couple hours ago. He had a cancellation for tomorrow morning so they gave me that appointment. For the first time in more than a week the intense panic and fear that has taken up residency in my gut has gone down a bit. I just pray that he'll be able to help get me through these next couple weeks so I can take good care of my mom and drive myself back home.

The guy who did my occipital nerve decompression more than a year ago has offered me two more procedures during which he can disconnect the nerves above my eyes, on my temples and behind my ears. I had been putting it off because I wanted to find the cause, tackle it directly and avoid more surgery. I'm over it. I don't care what has caused my pain to get so out of control, I just need the pain to stop. Especially now that I don't really have a way to treat my migraines. As soon as I get back and can sit down with my neurologist I'm going to push to have it done ASAP. Even if it means doing it over the holidays.

I don't like this feeling of desperation and urgency.

Scared

I spent a good 6 hours in the ER yesterday. Despite lots of medications they never really got on top of my pain. The prescription my doctor called in was for Tylenol 3. She doesn't want to give me another triptan and she doesn't think any of the other stuff will work for me so she just wants to try to treat the pain from a distance. She said, unsolicited, that she can't write for a narcotic from Virginia because she would need to sign the prescription. I didn't know we were there. I thought we would spend the next couple of weeks trying different rescue meds not trying to cover up my pain.

This situation continues to get worse. I can't manage without a rescue. I don't know what to do here. I'm so scared.

Today I'm going to try to get an appointment with the neurologist I saw back in July at Mayo. At least he is here and maybe can offer some help.