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.

Fingers Crossed

My migraine returned yesterday about noon and with no rescue medication it was a very long day. I had considered going to the ER but feel so guilty about my previous trip to the ER earlier in the week. I don't know how justified I am in this, but I live in fear of my insurance company. Probably because I depend on them so heavily.

Anyway, in another half hour my doctor's office will reopen after the long 5 day holiday weekend. I'm counting down the minutes. I've had a good deal of soreness in my lower legs the past week or so and can't help but wonder if it is related to the chest tightness. I hope it is, that way it will go away with the chest tightness once all the meds are out of my system and I've found a new rescue medication. The last thing I want for Christmas this year is another physical problem to deal with.

My mom's surgery is tomorrow so I'm going to spend the day today getting a few things done. I still have a bit of a migraine but since I forgot some basic stuff at home I really need to make these errands happen. If I get to feeling much worse I can always stop by the ER and treat the migraine. Of course the hope is that my doc will be really responsive and I'll have a new rescue to try yet this morning.

From Minnesota

Gosh it feels like I've been away from my blog for month. I was feeling so lousy, I didn't have a reliable migraine rescue and I had a two day car trip ahead of me. I ended up leaving on Friday, two days ahead of schedule to avoid driving during my period (the migraines are always harder to treat during). Yesterday afternoon I arrived sore, exhausted and just so glad to be done with the driving. The last 3 hours or so were the toughest because my neck was just screaming. It didn't take long after getting out of the car and sitting in a regular chair for my neck to calm down and feel okay again. No damage done.

It was a tough trip because of the reactions I've developed from my rescue medication. In the meantime I've missed so much of what's been going on with my fellow bloggers and have been neglected making posts myself. But now, at long last, I've arrived in Rochester and I'll have the time and energy to give attention to blogger again.

A quick update: Yesterday my chest pain finally started to feel better. That is, until I tried the new rescue medication. It did a satisfactory job with the migraine but it also made the chest pain much worse - just as I feared. The search for a good rescue will have to resume on Monday when my doctor returns from vacation.

I hope you all were able to enjoy your Thanksgiving. I'm super thankful for all of you!

A Very Bad Situation Indeed

I don't even know where to start.

To say that I'm fearful and stressed is quite an understatement. I've been having some strange symptoms in the past couple weeks but this past Sunday things got worse. My chest felt tight and when I would bend down my heart would jump (as though I had just been frightened). I decided that if the symptoms continued in the morning I would call my neurologist. I felt better though so I went to PT and did some holiday baking and such. After my mid afternoon walk with the dog I was feeling much worse. I was winded and my chest was tight again so I picked up the phone and called my doctor's office. She had already left for the day.

I left a message and was certain I would hear back from her first thing in the morning. I didn't hear from her at all but her office called just before 11am and said the doc thinks it is the imitrex and she wants me to stop taking it. "So what should I take instead?" I said. "I don't know, I'll leave another message for her and call you back when I have an answer." said the woman.

Seriously, why would she say to stop taking it without replacing it with something else?

It was 4 hours before I got another call from her office and she wants to send a new prescription to my pharmacy. Okay, great. So my husband got home and we went to Costco and I got to feeling even worse. We decided to go to the ER because these symptoms were getting worse with the activity and we didn't know how serious it was.

After several tests the ER doc determined my heart and lungs were fine - no immediate danger - probably just the imitrex. I felt a little foolish going in since it turned out to be nothing, and, of course, the insurance fears kicked in too. But I was also relieved to know that it wasn't serious. Then this morning I went to the pharmacy on my way to PT to get the new rescue med that she phoned in. I was a bit surprised and sort of concerned to see that she had prescribed another triptan. So I asked the pharmacist if another medication from the same family would be likely to cause these disturbing and painful side effects. He thought so. He offered to call the doc's office and see what he could find out.

What he found out is that my doc has already left on holiday and won't be back until Monday. The anxiety I had been holding at bay came flooding out. I'm leaving for Minnesota on Sunday, which means I'll be traveling all day Sunday and Monday. What happens if this new medication doesn't work? I won't have any way to get another med. Plus if it doesn't work than I'm stuck on the road with no rescue and I certainly won't be able to drive. And if that happens my migraine won't end. They don't come to an end by themselves because of what's going on with my neck - retriggering continually. I honestly don't know what I would do. To make matters worse I'll be getting my period in the next couple of days, which means my migraines will be harder to treat. And that's assuming I don't have the same reaction to this med that I had to the imitrex.

I'm working hard right now to stay calm and breathe well because the tension is not good for my head. I doubt I'll be able to avoid a migraine. I guess that's okay because it will give me a chance to try the new medication. Of course, doing so will also prevent me from being able to tell if this new medication creates the same freaky side effects since I'm still experiencing them.

This could not be timed worse. Now is just not the time to try to find a new rescue medication. I've tried other rescues before with no benefit at all. The fact that I suddenly need to find a new one is scary enough, but doing it right now is terrifying me. I pray that I can make it through Monday without too many more snags.

When my husband gets home I'll talk with him about possibly leaving on Friday instead.

A very bad situation indeed.

sigh

My PT read something online about food allergies playing a part in migraines and now insists that I should try elimination diets starting with wheat and gluten.

sigh

First, I honestly don't know what I would eat if I had to eliminate wheat and gluten from my diet. Obviously people follow such diets and I would be happy to make such an extreme change in my life if it meant relief but (secondly) I don't really know that we have grounds for such an action. I don't know that I have an allergy or sensitivity to either of these things and wouldn't I go to an allergist before spending the next year of my life eliminating one thing at a time to see if that's the problem?

Have any of you had experience with this kind of thing?

Has This Ever Happened To You

Does this ever happen to you?

Sometimes when I close my eyes I get a, well I don't know what to call it, an image. I will see the room that I'm in from the perspective I'm in - only I'll see everything with perfect clarity and in bright light.

It is always very striking because I keep my surroundings dimly lit and between the visual disturbances I experience with my migraine and my eye's convergence insufficiency most of the time things are slightly out of focus. I'll be wide away, close my eyes and suddenly I'm transported to the healthy version of this same place. It will last a few minutes and during that time I can open and close my eyes without losing the image and then it just fades.

This isn't a regular occurrence but it happens at least once a month or so. Each time I am surprised and amazed by what I see. I only wish I could understand what's going on. Why does this happen?

Does this happen to any of you?

Today's Dent Pushed Me Over The Edge

I don't have a lot of nice things but what I do have I take really good care of. I have never been in a position to just replace stuff regularly. This attitude extends to all of my stuff. That's why at 32 years of age I have sweaters and shoes that are 15 years old. Furniture that was discarded by family and friends that I've spiffed up and loved into more than a decade. I regularly vacuum and armoral my car.

I'm very grateful for all the stuff I have - it is all valuable to me even if it was really cheap or free because it all serves a purpose. You can tell that I value this stuff because I take such good care of it.

The most expensive thing I've ever purchased is my vehicle. And the first vehicle I bought (8 years ago) is the same vehicle I'm driving today. I love my car. It allows me to be mobile and free. Talk about value. I worked so hard to purchase, pay off and maintain my car and for 6 years it was in great shape. It was in great shape until we moved here to suburban DC 2 years ago.

Apparently here nobody gives a damn about anyone elses property because it is getting so banged up just parking in our apartment lot. And I'm not even talking about little dings like someone opened their car door too fast, I'm talking about dents that are deep and in spots that don't even make sense. I have 3 different car paints that have transferred via scrapes onto my side mirrors. I have no control over what's happening out there. I park far away and even then some idiot will park crazy close instead of taking one of the MANY open spots surrounding me.

My car parked for years outside in apartment parking lots and even school parking lots and it has never gotten so banged up. This has gone so far beyond what one should expect when parking with the public. This is ridiculous!

I'm so so FURIOUS at my careless, rude, stupid neighbors!!!!! I have never, never even dinged one of their cars. Why? Because I'm considerate and respectful. NO MORE! Today's dent has pushed me over the edge and I will no longer be careful with their vehicles. I will in fact be banging into their vehicles on purpose and with muscle. I hate living here!

You see that picture up there? That's how I feel right now.

Climbing Out of a Bad Spell

After almost two weeks of constant migraines it looks like I'm finally climbing out of it. Just in time too as there is still so much to do before my trip. I'm back to my regular housewife duties.

Much like with Halloween I'm having trouble feeling like Thanksgiving is just 9 days away. The news has been all over the holiday retail season's early start this year. The radio stations are going to start playing festive music on Friday instead of after Thanksgiving as usual. I've had to start planning and such already. No wonder I'm not in the Thanksgiving Day spirit.

Maybe another reason is that we don't really have any plans. For the most part all of our family and friends live so far away. I say for the most part because I do have an uncle and a cousin who live in the area and we have spent the last couple Thanksgivings with them. I sort of doubt that will happen this year as they have had some family drama and may not be up for it.

I don't mind not having big plans especially since I'll be leaving that weekend. The more rest I get between now and then the better I'll do on the long drive.

Do you have big gatherings for Thanksgiving? How does this work with your pain?

Night Fan

I love that the sun is going down earlier and earlier. The return to standard time is something most people don't care for. People love the sun. I used to be one of those normal people who enjoyed sunlight. Of course I've preferred dim light or dark since I can remember...probably because I've had migraines almost as long. These days I would be happy to have short cloudy days all year round.

Here it is, 3 o'clock in the afternoon and the sun is at such an angle that I can part my room-darkening curtains some without being stabbed with the bright rays. Of course I'll still keep the miniblinds down to filter what is left of the rays. Within two hours it'll be time for the dim lamps to come on. If only this could go on all year.

Do your migraines help you to appreciate the shorter days too?

Adventures in PT

On the first of November I started tracking my activities at the suggestion of my physical therapist. She thought that by looking at what I'm doing she might be able to make suggestions about where to make changes to take better care. My tendency with this kind of thing is to go to my computer and design a spreadsheet of some kind to track whatever. I resisted the urge and just wrote down the things I did each day including my migraine.

I took my hand written paper in with me this morning to PT to see if I was on the right track. Turns out she was looking for more detail so I'm headed to the computer to take it too far. But the lists I had put together started a conversation about the things I am doing. She doesn't think I should be ironing and is concerned about the stackable washer/dryer being bad too. Why don't I just take everything to the cleaners? Um...because we can't afford to pay someone to clean and press our clothes. She and her husband make really good money and I don't know that she realizes how unrealistic that is. We can't afford that kind of thing so I will continue to do laundry regularly and iron a thing or two as needed.

She also made suggestions about what I could do to get out of the house, organizations I could volunteer with. I would love to get out more and I appreciate her efforts to get me in involved in something I'm interested in. I just don't think she really gets how much I struggle just to get basic stuff done at home. I don't think she understands the migraine fog or how debilitating they can be. Even though I'm able to get stuff done and it doesn't look like I get much done each day, that doesn't mean that I have all kinds of spare time. When I'm not doing something it is for one of three reasons.

1. I'm recovering from doing something

2. I'm preparing to do something

3. I am treating a migraine

I don't try to explain this to her. Partly because I don't know that someone who enjoys good health can really understand and partly because I don't know that I have the time or energy to really explain it. I'm not convinced that I'm doing the right thing by just politely taking it in and making generic comments like "oh yeah, that sounds like a great organization."

What do you ladies think? Should I try to explain what my days are really like or not? Have you had similar experiences?

Preparations

I'll be driving to Minnesota again in about 2 1/2 weeks to help my mom after her knee replacement surgery. The plan right now is to stay about 2 weeks but of course that could change depending on how she's doing and what the weather is like. Minnesota in December is pretty unpredictable outside of the cold.


While I wasn't expecting another road trip so soon after my summer Mayo trip I'm really excited to get to see my family and friends again. I just hope that I'll feel okay so I'll be able to go out and do stuff.


Preparations for the long trip are already underway because my body will only allow me to do a few things a day and I still need to keep up with things around the house. And since I'll be leaving right after Thanksgiving and returning pretty close to Christmas my husband and I have already started working on our Christmas cards.


The first Christmas we were married we put a picture of us, our dog and our rabbit in the cards we sent out. The second year we did picture cards. Last year was a tough year and we decided to do something a little more fun so we used photoshop to place us in front of the capital building and to put our dog up on one of the balconies. It was a big hit, so naturally this year we're going to be using photoshop again.


I don't actually know photoshop but fortunately my husband is a wiz. I mostly help with concepts, finding and taking pictures, and asking "can you..." It's actually pretty fun. We have the background done and hopefully this weekend we'll be able to get our faces and our dog placed.



All of this feels premature two weeks before Thanksgiving but is it ever really too early to start thinking about Christmas? Without this advance planning I wouldn't have the time to relax and enjoy my holidays so I'm not the least bit apologetic about it. I LOVE CHRISTMAS!

A Nap Day Dream

I'm in the middle of yet another stretch of bad days. The kind when my rescue meds never really able to get on top of the pain or nausea. These days are always extra exhausting so my activity level is quite low.

Right now I'm wanting to just snuggle up in bed and nap the worst of the pain and ickiness away. But I really do want to get a couple things done first so I'm taking a few minutes to blog about my nap day dream. I found this picture of an Ikea bedroom that I think is fabulous.

I love the dark rich colors. I love the window in back of the bed so at no point will the sun peek through and shine directly in your eyes. I would use room darkening window coverings and would not use so many lights but you get the idea.

Okay, I should get back to it. But I'll be thinking about this picture later tonight as bedtime grows close.

Migraine Blog Carnival is up!

The November Headache & Migraine Blog Carnival is now available HERE!

This month's topic is "What are you thankful for despite living with migraine disease"

Still So Much To Be Thankful For

Living with chronic pain is a huge challenge. It has forced unwanted and unwelcome limits and alterations into my daily life. So much of my time is spent trying to manage my symptoms and medications, navigating insurance and health care, struggling to accomplish household chores and be a good wife. So often I feel overwhelmed and consumed by all of this. But when I really stop and think about it my life is still full of blessings.

All of my basic needs are being met. I have a roof over my head, clothes to wear, food to eat, shampoo and soap in my shower, heat and air conditioning, health insurance and we are able to live within our means. Additionally, I enjoy many luxuries like a wonderful husband, a computer and Internet access at home (allowing me to connect with the world), a Netflix subscription for entertainment, a washer/dryer in our apartment so I don't have to sit all day at the Laundromat and a great pet dog who keeps me company all day. Plus, I have a wonderful family and great friends.

Despite the health challenges I'm facing I still have many health blessings. I can walk, see, hear, taste, smell. I don't have a life threatening illness. And, I also still have hope.

Focusing on the many things I still have to be thankful for in my life helps me to see past the many challenges I'm facing as a result of my chronic pain and is a wonderful reminder that my life is more than just pain and limitations. With Thanksgiving just around the corner I'm so thankful to have so much to be thankful for!

What are you thankful for this Thanksgiving season?

Some Good Things

I need a thankful list today.

1. Being done with grocery shopping for the week - I hate grocery shopping and now it's done.
2. The election is almost over - meaning the hateful ads will stop for a while.
3. Hot chocolate :)
4. Jon Hamm on SNL a couple days ago.
5. My dog snoring beside me.
6. Time with my husband.
7. Netflix - and all the wonderful shows it allows me to see.

Blog Carnival!

The New ChronicBabe Blog Carnival is up HERE.

The topic is: We all fall down...and then we get back up again.

Check it out, there are lots of great posts!

Rally Recovery

As soon as we heard about the Rally to Restore Sanity my husband and I thought it would be fun to go. We are both fans of The Daily Show and Colbert Report and of the clever thoughtful comedy they produce. And since moving to the DC area two years ago we have seen many big events on the National Mall highlighted on the news the way most of the country sees them. This is a place where history is made, people come together to express their views, protest, celebrate, etc and boy, wouldn't it be something to be a part of something like that?

Every time I would think that to myself it would immediately be followed by thoughts of the crushing crowds, the jammed Metro, the smokers and drinkers, the summer heat or winter chill or bright sunshine and I would come to the obvious conclusion that I don't want to see or do anything bad enough to put up with that kind of crap. But for some unknown reason I thought it might be fun to go see Stewart and Colbert and so did my husband.


So we got up early, packed lunches and a blanket, bundled up and drove to the Metro station. We counted ourselves lucky to be locals with Smarttrip Cards that allowed up to bypass the outrageously long lines to purchase fare cards. But that just got us underground, where the subway platforms were so packed people were waiting in line to even get on the escalator. This was not the furthest station out so by the time the trains arrived they were already packed with people. Fortunately most cars had at least one or two people getting off so at least a couple more people could get on. But you can imagine how slow this made the entire process.





I wanted to turn around after we saw train after train come and go with little to no progress being made to get on one. But my husband wanted to go and get pictures and some video and maybe put together something for his work. And I really wanted to be there for him as I often feel like my migraines limit our activities. So we managed to get on a train and were downtown in no time after that.


We walked through the huge crowd that had already formed and found a patch of grass to sit on and eat our lunches. The rally was to start at noon and it was about 11 ish when we arrived. People brought dog, and they weren't supposed to. People were smoking. People got drunk in advance as no alcohol was allowed. And the crowd just grew and grew and grew. By 12:30 we had spent a 1/2 hour listening to a band we didn't care for a loud group of drunk people were invading our space I asked my husband if he was having a good time. He said no so I told him I wasn't either so we packed it up and headed home.





As we were leaving we saw that the crowd was still streaming out of the station and down the sidewalk. The trains were still packed and the lines at the fare card machines were just as long. We were both SOOOO glad to be headed home and away from the madness downtown. I honestly don't know what we were thinking. I'm still in rally recovery mode.

We won't be making that kind of mistake again.

Ups & Downs

The ChronicBabe blog carnival topic right now is - We all fall down...and then we get right back up again. Kind of fitting today because I've been down for about a week now. From my present state of mind I feel like my chronic pain has pulled me down and occasionally I pull myself up out of the mire.

I know this is just a matter of perspective. A case of glass half empty or half full. When I'm down it feel like that's where I spend most of my time and boy is it difficult to claw up out of it. But once I am out of it I feel hopeful, energized and my glass is half full again.
Sometimes I wonder how much control I have over the ups and downs. It seems to be largely dictated by my level of pain and discomfort. But at the same time I believe that our thoughts and our state of mind are powerful influences in our lives. Plus I really want/need to have steps I can take when I'm down. Here are some of the things I do to try to pull myself up.
1. Make time to think about the many blessings I have. This really helps to put my mind in a thankful and more positive position.
2. Spend as much time as possible consuming comedy. Obviously, laughter is one of those really important things in life. I happen think it's actually critical in the life of someone with chornic pain - it is in mine. When I'm down that's when I need it most. Again, this is about putting my mind in a more positive position.
3. Try to have conversations with friends. I've lived far away from my support system almost the entire time I've struggled with this chronic pain. Sometimes just having a phone conversation or online chat with one of my friends back home can remind me that there is more to me than just the struggles of pain.
4. Pray and be still. I'm working on getting the hang of meditation so I can add that too.
5. Snuggle with my husband.
The way I see it, we don't have a choice. When we're down we have to find our way back up. What do you do to pull yourself up when you're down?

Body, Why Won't You Just Cooperate

I'm so frustrated with my body right now. I wrote last month about the change in my cycle and subsequently my pattern. This month my cycle is even more out of control. I've been experiencing an extreme body wide discomfort. No matter what I can't get comfortable. In fact the discomfort has turned into a kind of pain.

I've also been experiencing internal overheating. How do I explain to you-all how unusual this is for me? You see, I don't have much personal insulation, especially after losing so much weight over the past 5 years of chronic pain. But even before that I've always been tall and skinny with very low blood pressure. I've always been the kind of gal who gets cold when it drops below 70 degrees. I've always kept my living space warm the way grandma likes it. I've been the kind of girl whose nose, hands and feet can get cold even on a hot summer day. But for the past few days I've been overheating to such a high degree that my normal activity is disrupted.

I don't know what's going on here but I do know this is not what I need right now. I'll be headed to my GYN at the end of December so I guess I'll just keep good records of what's going on and look forward to some answers and hopefully some relief at that time.

I'm so sick of this game - this waiting for appointments and hoping for relief that isn't often obtained. Body, why won't you just cooperate?

Looking For That Halloween Feeling

I've given myself permission today to do very little outside of let my neck and upper back regroup from the past week of muscle tensions. Okay so I've tried to do a couple of small things but mostly I'm just hanging, reading blogs and watching TV.

This time of doing very little has me thinking about how close we are to Halloween and how I'm not feeling it. Normally when the holiday season gets started I feel an excitement for each approaching holiday. With Halloween less than a week away I still haven't achieved that excitement.

Perhaps I spent so much time this month looking forward to our mountain getaway and the Rally to Restore Sanity (coming up on the 30th) that I just haven't had the chance to focus on Halloween. Maybe PT is the distraction. I don't know but I want that feeling. I want to think about costumes and decorations even though I won't be purchasing or decorating for Halloween this year. Maybe a trip to the store to look at these kinds of items would be enough to stir up some of the desired excitement.
Do you get excited about the holidays? What are you doing to celebrate Halloween?

PT Woes

I've been seeing my PT gals for almost 2 months now. I see a great PhD physical therapist with many years of experience with my kind of issues for the first 1/2 hour and then I get passed onto a therapist assistant who takes me through the exercises for the last 1/2 hour. The assistant I normally work with is great but left 2 weeks ago Wednesday to get married and take a honeymoon.

The gal who is filling in for her specializes in sports and doesn't believe anything we've been doing is effective so she went ahead and started me on entirely different set of exercises. Each and every one of these new exercises works the muscles between my shoulder blades and lower neck area.

After the 3 restless and extremely uncomfortable nights camping last week followed by 2 straight days of her significantly more intense exercises my neck and upper back were in a pretty painful spasm. I wasn't able to do much of anything on Saturday. Sunday was a little better but not much. Today I was beginning to loosen up a bit and move pretty good. Just in time for PT this afternoon.

I was pretty clear that I had a long painful weekend but she insisted that I continue with the same exercises - using the very muscles that were just coming out of spasm - only doing more stretching between them. So guess what? Now I'm back in the same painful spasms and have just gone ahead and canceled my appointment for tomorrow.

Next week my usual gal will be back and so will I. Can't wait.

To Botox or Not

I just saw this NY Times article about the recent FDA approval of Botox for chronic migraine (15 a months or more) prevention. Obviously this is a good first step towards insurance coverage for those of us suffering with chronic migraines who want to try it but can't afford the high price tag.

I'm concerned about it though. Anecdotally I feel like I've read other blog posts of migrainistas who have tried it with negative or no effect. It also seems like the research I've heard about doesn't really show that this is an effective preventative. My physician has talked about it several times. She really wants me to try it but it is far too expensive for me to consider. Somehow, it feels like a really expensive gamble with the odds stacked up against me.

Is it me? Have you-all had, heard about, or read studies of positive experiences with Botox?

I do feel like I would try it, out of sheer desperation for relief, if my insurance company decided to cover the cost.

Vacation Recovery

So my husband and I just got home yesterday from a short vacation to the mountains. We wanted to get away from the city for a few nights and just relax and be together. I'm not a outdoors kind of woman so I searched for a cabin with heat/air (you never know this time of year), full bathroom, kitchen, a fireplace and dog friendly.


The cabin was pretty nice but it was more remote than I had anticipated. We were in a pocket where there was no cell phone service from any provider, which I wouldn't have minded if there had been a land line in the cabin. There were no street lights so if you were needed to go out after dark you were pretty much on your own along the poorly marked windy mountain roads. The only lock on the door to the cabin was one of those push and turn locks and it was installed in such a way that a simple credit card could have released it. Yep, more remote than I had anticipated and more remote than I was comfortable with.



I was fine during the day. We explored the area, played games, had lots of fires and general merriment. But when we laid down to go to sleep with the lights and the music off, oh boy. That's when my imagination would run wild. I felt so vulnerable that I just wasn't able to relax enough to sleep more than a few hours each night. If anything went wrong we would just be stuck there until light.


Don't get me wrong, I actually really had a good time outside of the poor sleep. The mountains were undergoing peak foliage and were absolutely gorgeous. Oh well, live and learn. Next time I'll verify access to the outside world.


As you can imagine I'm now in vacation recovery mode, tired, in pain and way behind in my household duties, not to mention my blog.

Medical Trick or Treat

I love this blog carnival topic because so often I feel like a vulnerable child, on Halloween, dressed up like a sick girl, knocking on a stranger's door just hoping the practitioner who answers will be competent, understanding, a good listener and a great detective. The ugly truth is that there are a lot of scams, lies and incompetent, unscrupulous folks out there. What worries me is how difficult it can be to know the difference before it's too late.

Here are some of the tricks and treats I've encountered:

-Preventative drugs feel like tricks because none of them have been able to prevent my migraines. My doctor tells me that she has patients who respond to these daily preventatives and I certainly have no reason to think she is lying about it. After all she did not just think up drugs to give me - these are commonly used for migraine prevention. I guess the real trick here is my body not responding as we all wish.

-Rescue medications, on the other hand, feel like treats because they are the only reason I can still function as much as I do. Don't get me wrong, I don't function all that great but they keep me out of bed 24/7. Small victories -right?

-Insurance is a mixed bag of tricks and treats. They continue to make record profits and tell their sob stories about how they need to charge more and more because their costs are going up. Oh, poor multi-trillion dollar corporations. Don't we all feel bad for you. Sure, let us take care of it and hey, why don't you go buy yourself a small island to cheer yourself up. On the other hand, we would all be bankrupt without it. ARG!!!

-Acupuncture is a big treat. It's been several years since I've had it done. In fact it was one of the first things I tried when my migraines started getting out of control. While, it never seemed to do anything for my migraines it made me feel so darn good. It was more relaxing than anything - even a massage. I would always leave feeling different, more together. Perhaps the benefit didn't take hold because I couldn't afford to have it done as frequently as I was told was necessary. Either way, I loved it and hope to have much more of it in the future.

-Laughing is a grand treat too. I often feel like I'm going to explode from the pressure, stress and frustrations that come with chronic pain. Don't know what I would do if not for the release comedy provides my body and soul.

What's your favorite treat? What's the biggest trick you've ever encountered?

Anniversary Fun

So yesterday was my three year wedding anniversary and thankfully I was feeling good enough to go ahead with our celebration plans. The plan was to go downtown and have a wonderful Chinese dinner in Chinatown and then walked down to the Lincoln monument so we could sit and enjoy the beauty of the monuments all lit up in the dark.

What I didn't realize is that the folks filming Transformers 3 had also made plans there for the same night. Just the one night. They had the entire area flooded with lights, which of course attracted all kinds of big bugs. The filming itself attracted a whole bunch of teens and other onlookers who just wanted to watch. It wasn't quite the visual or romantic experience I had in mind but we managed to make the most of it. After all it was perfect weather, we were together and I wasn't in a bunch of pain.

Any time I feel okay on the same day I want to do something fun is a fantastic day.

Missing Lone Star

It's been a few weeks now since Lone Star was canceled after just two episodes aired and I'm still sad about it. I've watched the two episodes on Hulu.com a couple times longing for more, longing to see the story unfold, longing to know what becomes of the characters.

Lone Star was the best new thing on TV this fall by far and it was the first to be tossed aside by the networks. It was a rare gem of greatness. A unique and interesting story that was perfectly cast and beautifully executed. I don't normally feel so strongly about a show, especially one that only aired two episodes. But something was special about Lone Star and now it's gone.

I blame the network for the poor title, not promoting it properly and for giving up on it so quickly. Did you ladies get a chance to see it? Is it just me or did you love it too?

Migraine Blog Carnival Is Up

The new Headache and Migraine Blog Carnival has been posted.

This month's topic is all about how our hobbies help us cope with our head pain and can be viewed here.

It's well worth the read!

Thankful For Things To Do

Coping with my chronic pain is one thing. Coping with not working while in a city so far away from my family and friends is a whole different beast. Prior to the onset of all this pain I happily participated in several hobbies. I loved to draw, do theatre, crochet, bead and have long conversations with friends. Unfortunately, the pain coupled with the fog have made doing these activities impossible. Either I can't physically manage or my brain fog just blocks my creative juices.

I've had to search hard for things I can do when my pain eases up enough that I can function. It is the only way I manage to stay somewhat sane during this incredibly difficult time. Here are a couple of the hobbies and projects I've adopted to help me cope with my present situation.

1. This blog which I started about 10 months ago has been a real positive for me. My wonderful followers with their understanding and encouragement make me feel less alone in these struggles. I also love reading the blogs of my fellow chronicbabes.

2. Creating a Shutterfly site for my extended family to share photos and events with each other. This is a project I just started in August and have really enjoyed putting together. I've had to take a break as we worked on closing our storage unit last month but can't wait to get back to it when I've recovered. The older I get the more interested I get in my family history.

3. Cooking healthy and tasty meals is sort of an accidental hobby. I'm a housewife so I prepare our meals. I've stopped eating meat and worked really hard to find and prepare healthy meals for my husband and I. It has not been easy, especially on high pain days but is a work in progress.

4. Dates with my husband. It's not really a hobby or project but it goes a long way to helping me feel somewhat normal and helping me to stay connected to my husband.

Honestly I wish there was more I could do. I wish I had the ultimate destresser of face to face time with my friends regularly. Good friends are a very important part of a woman's life - any woman. I think it is especially important when we are facing adversity. That being said, these things really save me from twiddling my thumbs into madness and I'm mighty thankful that I can do these things.

Disappointing Day

It took almost 2 hours to make the 20 mile trip into the heart of DC and that was without rain. Thankfully it didn't rain. Can you imagine what that would have done to the trip? Anyway, we made it and I got my handful of minutes with the doctor.

You can't imagine my extreme disappointment when he told me he doesn't think what's going on with my jaw is contributing to my migraines. He says my disc is displaced and that it is very common. Sometimes causing pain and sometimes not. I don't understand. My jaw and head pain always go hand in hand. When I have a bad migraine I have a super painful jaw and vice versa. Neither ever happens alone. How can the jaw have nothing to do with it?

I'm crestfallen and want to just cry. Of course I can't because it hurts too much to cry. I'm not sure what to do next. I was so positive addressing this jaw issue would provide me some relief. I don't want this to be my life. What else could it be? Honestly, what else could it be? None of the preventive medications have worked. Doesn't that have to mean there is something else contributing? Oh this is so frustrating! I want answers and every time I turn to another idea I come up empty.

Boo!

Let's Try This Again

This week is a bit crazy - well for me. I saw my neurologist yesterday. We're going to try yet another preventative. I haven't had a new drug to try in a while so this should be interesting. It's another take at bedtime, may make you drowsy kind of drugs. I've been sleeping so very well since I started taking bedtime drugs - so unusually well that I often wonder if I could still manage without them.

Then I had PT this afternoon. It's been 30 days since I started so it was time for a reevaluate. Sounds like things are improving yet there is still progress to be made. When we started she told me that I had an excessive range of motion in my neck and a really tight thoracic spine. The spine is loosening and as that has happened the range of motion actually got even more excessive.

Tomorrow I will finally get to the maxillofacial surgeon. I know I said as much last week just before getting the cancellation call from his office. This time it should actually happen. I've prepared my disk and radiologist report along with directions to the hospital he's at. I even packed a book in the extremely unlikely event that we arrive early. The only thing that could stand in my way now is the rain in the morning forecast. Traffic here doesn't need much of a reason to turn from bad to a nightmare. Rain always creates a nightmare here and there is a chance it will be falling during the morning commute. DC traffic sucks!

A Girl Has Gotta Do

Welcome October! So very happy you are finally here!

As you know my husband and I spent a good part of September emptying our storage unit, downsizing and reorganizing our 1 bedroom. We finally got the last of it out yesterday evening just before the storage unit office closed. We have officially shoe horned everything we really wanted to keep into our small apartment. To do so we have given up a good amount of floor space, which now looks a lot like the storage unit did (stacked boxes and such).

While it feels good to have all the stuff moved there is still quite a bit left to organize. I don't so much mind that our space is smaller or that the aesthetic has changed but after 3 weeks of moving stuff in, sorting, reorganizing and such our apartment has been in a constant state of disarray, which is starting to really bother me. When my space is cluttered and disorganized I feel that way internally. I'm not feeling well so I'm having a tough time trying to get to these smaller organizing tasks done.

There isn't much I can do about it. The tasks will wait until I can get them done. I'll continue to make slow progress and do what I can when I can. In the meantime, to counteract the internal stress of the undone mess, I did what every other woman would do - I cut my hair.

It feels great even though I don't.

Some Stuff I'm Thankful For

Tuesday evening I got a call from the Maxillofacial doc's office, he apparently had an emergency and needed to reschedule with me. SO we made another appointment next week at the same time. So the wait continues. Turns out it all worked out for the best as I ended up having a really tough time sleeping that night and I woke up with a pretty ugly migraine. I would have had a really tough time pulling myself together for that appointment. I guess it all works out how it ought to.

I never got on top of yesterday's migraine and after waking up with another one this morning, I suspect that I'm moving into a block of days with that pattern. It happens. In the meantime I think I may need a thankful list:

1. Our king size bed giving my husband and I plenty of room to stretch out.
2. Clouds, rain and cooler temperatures - finally the relief of fall
3. Great new and old comedies in prime time
4. Shelter, food, shower, laundry and other creature comforts.
5. Wonderful husband

What are you thankful for today?

Some Rain In The Way

The end of the month is quickly approaching and we are working so hard to get the remaining stuff out of our storage unit before the 1st so we don't have to pay again. My body is pretty sore as a result of all this lifting and moving stuff. Obviously I leave all the heavy stuff for my husband but it just doesn't take much to cause trouble for my neck, arms and hands. I'm going to be paying for this for a while. Unfortunately the weather is not cooperating with rain yesterday, today and expected through Thursday (the last day of the month). It does look like we'll have some dry-ish weather on Wednesday before late afternoon and evening hours but that is also the day I have my appointment with the maxillofacial guy downtown and PT after that.

I'll have to make some time today to get all my papers together for this jaw appointment. Seems like I've been waiting most of the year for someone to look at my jaw MRI and tell me what's going on and what, if anything, can be done about it. I'm a little nervous about getting downtown on a weekday morning. There is never any way to know what's going to happen traffic wise so it's hard to know how much time it will take to get there. And this hospital is in a location I'm not familiar with so there is the potential for getting lost too. Hopefully Wednesday morning will be free from accidents between here and there and we'll just drive right there.

Alright, back to work here.

Missing My Pattern

The pattern that has developed this year with my migraines seem to be changing. It used to be that the time between ovulation and when my period starts was the best time. It was the time when I had the fewest migraines and it was harder for them to be triggered. This month isn't playing out the way it ought it. I ovulated more than a week early and I've had a migraine every day since.

I'm pretty frustrated about this change. The only upside to my migraines this year is that I've had this predictable pattern and could kind of schedule things around it. I still got migraines, but fewer of them. I feel like I'm only left with a hope that is just an odd month and my body will return to pattern next month. But I'm a worrier these days and so I worry my body is actually returning to how it was last year and the two years before that.

Then I worry that if I'm returning to the previous years of no-pattern it is because my remaining ovary is under attack by my endometreosis. After all, this pattern only emerged after having the destroyed ovary removed in January. Hanging onto this last ovary is pretty darn important as far as I'm concerned. I'm just too young for menopause.

Additionally, I just don't want to return to the unpredictability of prepattern days. I never knew what was going to happen.

Have any of you experienced a loss of your pain pattern ever?

Angry Over Insurance

I woke up in fairly good spirits and without much pain this morning and started getting ready for PT. My decision to open the mail with my spare 10 minutes was the wrong one. The correspondence from my husband's insurance company quickly had me tense with stress and anger. By the time I made my way through the traffic between here and PT a migraine was already taking hold.

My husband had gone to the dermatologist earlier in the month and paid his $50 co-pay before seeing the doctor. It was a simple office visit and that should have been the end of it. The doctor's office billed the insurance company $60 for the simple visit. The insurance company then decided not to pay the bill but to give us a $20 discount for associating with them and then notified us that we will be responsible for the remaining $40. So the doctor's bill was $60 and with his insurance we are supposed to pay $90. Ummm, NOOOOO!!!

First of all, the office visit is only supposed to cost us the co-pay. Second of all, even if there was more to it (which there wasn't!), we already met the deductible, the physician is in our network and so the insurance company should have paid the majority of it. Instead we are supposed to pay $90 for a $60 bill and the insurance company pays nothing? Ummmm, NOOOO!!!!

Come on bureaucrats, let's think this one through. What's wrong with this picture?

The last thing I want to do is deal with this kind of crap. If the insurance company won't be reasonable hopefully we can just work with the doctor. After all he just wants his $60. I refuse to pay more than what the bill was for and I curse the insurance company who would allow this to happen!

Wore Out

Yesterday was a very productive day starting early with PT. I find that I can function really well after PT but almost always feel pretty sore the following day. So yesterday when I returned home I continued with the consolidation of our storage unit into our apartment. Over the weekend my husband and I brought a book case and a small wardrobe up. I spent all day rearranging our stuff to take advantage of this extra storage space and empty out our closet to prepare it for box storage. I was pretty wiped out by dinner time so I spent the evening watching new fall shows.

By the way, Lone Star on Fox is fabulous! I highly recommend you catch it on hulu if you missed it last night.


Of course today I woke up with a migraine and plenty of soreness from yesterday's activities. Mostly I've been resting to prepare for tonight's premiere's and PT again first thing in the morning.

Have you been watching the new shows? What have you liked? What are you looking forward to?

In Times of Crisis

In life we all have to deal with crisis situations from time to time. I've learned over the years that there is a big difference between the immediate crisis and then the effects or fallout of the crisis. I feel like during the crisis I'm pretty good at focusing on the facts, being logical and behaving rationally. I guess this is a result of the fight or flight response our bodies do naturally.

After is so much harder. Once my brain gets the time to think about what has happened and what it could mean the stress sets in, worry takes over, sleep is disrupted and my muscles go crazy. I probably don't have to tell you that these responses lead to more pain and tougher to treat pain. For me it's the migraines and muscles spasms.

One thing I try really hard to do during these times is to rely on what I know and not what I feel. I know I need to keep hydrated and eat as much as possible. I know I need to rest and breathe properly. I know that I need help and support and I know where to get it. This is SO hard to do because the emotions are so darn strong and often run contrary. Interestingly enough when my pain flares up it actually seems to help me with this part. It sort of forces my hand into taking care of these things I can control so that I can deal with the rest of the crap.

Another thing I feel is really important in dealing with a crisis is to allow yourself the time to sit with those feelings. We have to give time and recognition to our emotions just as we need to give time to our physical needs. I try to set aside time just to do this. Early on it takes up a fair amount of time (and can be exhausting, which can help with the sleep) but as time passes so does the amount of time it consumes and as that happens I've always found myself moving forward. One foot in front of the other - we must keep moving.

Boxes, Boxes

I've been going through the stuff in our storage unit and repacking the squished cardboard boxes into plastic containers. It's a big task and it has started to take over our living space. I'm kind of at the point where I'm ready to start stacking my containers in a corner and out of the way but need to wait for my husband for that task.

I'm already looking forward to this project's completion. It will be a 2 or 3 weeks I think before our living space normalizes again. Of course this is so slow because of my limitations.

Going through all of this stuff has me thinking about things I haven't in a while. Mostly inconsequential stuff like miniature gulf - I haven't done that in years. Then I found that we own video tapes of movies that we can see streaming instantly on Netflix for free. We even still have 2 or 3 of some of our movies - why do we still have more than one of anything? Some of the stuff we own is just silly.

Have you ever found crazy stuff in your home, not really sure why you have it still?

Nerves About Bed Bugs

I'm totally freaked out about this whole bed bug thing. Seems like we can't go even a week without coverage on one program or another. Thankfully they are not dangerous but they are so very gross and so numerous. EWW!!! My husband and I don't do a whole lot of traveling and spend even less time in hotels so I don't know that we are at a high risk but it also seems like the risk areas are spreading and it really only takes one hitchhiker bug to create a huge problem.

We have planned a short trip to the mountains in October where we and our dog will stay in a cabin. The more coverage I see the more concerned I get about this trip. We'll be smart about it of course and inspect everything before we actually stay. Last night I actually had a nightmare about it. The thing that is stressing me is that we will actually be there before we know if this is going to be a bed bug free environment or not. I don't know what we'll do if there are bugs once we get there. We had to prepay for the stay and I'm certainly not going to stay if there are b.bugs. I don't want to ruin our first vacation in 3 years but we can't afford to just search out and pay for another place to stay.

I'll have to give a call to the rental place and see what their policy is for handling this kind of situation. Better to be prepared...I think that's the only way my mind will be eased. Well, eased about the upcoming trip anyway. I understand that they are a traveling bug, but hopefully that doesn't mean if my neighbor brings it home with them that they could travel into our apartment on their own.

EWWW!!!

Downsizing

So we've decided not to move. I was pretty excited at the thought of getting out of this apartment and having more space but it stopped making sense over the course of the last week and now I'm excited about the new plan. The new plan is to go through all of stuff in storage and decide what we really need or want to keep and what can we sell. The stuff we're going to keep we hope to find enough room for in the apartment so we can just do away with the storage unit.

I'm excited to downsize and I'm excited to save money. Two very wonderful things if you ask me. I absolutely love the idea of living simply with super maximized smaller spaces. To my surprise I've even been thinking about designs that would fit our life and the ideals of simplicity and space economy. This move feels like a good step in the right direction to that end.

Plus this is a great excuse to spend more time at my favorite store in the world, IKEA.

Some Awards

I should have done this sooner - you know how it goes though, right?

Over the past couple of month 4 of my wonderful followers have gifted me with blogging awards. I wanted to take a minute here and thank Wendy Burnett of Sick and Tired of Being Sick and Tired and Jamie Valendy of Chronic Migraine Warrior who have both given me the One Lovely Blog Award.

I also wanted to thank Shalunya of Gypsy Shalunya and Jessica of Painfully Speaking who have both given me the Versatile Blogger Award.

I really appreciate the recognition from these wonderful bloggers. If you haven't already you might want to check out their blogs via the links on their names.

Part of the reason it has taken me so long to address these awards is the passing along aspect. I follow a number of blogs and was a bit overwhelmed by the task. I think what I want to do is pick 5 blogs to recognize for each award. I follow and really enjoy all the bloggers who have nominated me but they have obviously already received these awards so I will pick different blogs to pass this on to.

Here's a list of the blogs I would like to give One Lovely Blog Award to:

50 Is The New 40

Getting My Life Back One Bead At A Time

Jasmine's Cove

Migraine Puppet

The Mud and The Lotus

Here's a list of the blogs I would like to give the Versatile Blogger Award:

No Extended Warranty

Oh My Aches and Pains

Mo is Blogging...I Think

Inner Dorothy

Transform Your Chronic Life

Chronic Babe Blog Carnival

The latest ChronicBabe Blog Carnival is now available HERE

The topic is Health Care Reform

I highly recommend you check out the great information and perspectives

in this carnival.

Good Weekend

I went into the weekend that was without any plans and ended up having a rather busy one, by my usual standards. My husband and I spent most of the day Saturday looking for a new place and then on Sunday we got the opportunity to see Twelfth Night in DC. The Shakespeare Theater here was doing online lotteries for free tickets for this show. The previous weekend I didn't enter because my in laws were in town and so this weekend was our last chance. There was only the one matinee show on Sunday (For my head I knew I needed a matinee) so I entered just the one day and won! I LOVE going to the theatre and there is all kinds of great theatre here. Unfortunately, the ticket prices are just too steep so we haven't been to any shows. These free tickets were a real thrill for me.

Monday was a pretty tough day but it was all worth it.

With Labor Day finally over the fall series and season premieres are ramping up. It has been a long summer with not much on, especially August. As usual there are several shows I have real doubts about (but will give a try) and several that look like they'll be pretty good. Either way, I'm just looking forward to having something to watch while my husband works and when I don't feel well enough to be doing much else.

Health Reform Surprise

I got a disturbing letter from my insurance company late yesterday in the mail. Here's a portion of the letter:


"Because you enrolled in your plan on or before March 23, 2010, your health plan is considered 'grandfathered'. This has certain advantages. For example, your plan does not have to adopt some of the requirements of health care reform. Your plan's 'grandfathered' status allows you to keep your current health plan.


If you want all of the health care reform benefits, you can move to a different health plan after September 23, 2010. However, if you change plans:


- a personal health history may be required

- the new plan may have a higher premium (due to health care reform benefits)


- you will no longer be in a 'grandfathered' plan"



What the hell?!? I had no idea some of the health care reform benefits didn't apply to existing plans. Obviously I can't change plans. I can't imagine they would even give me insurance knowing what they know about me now. If they did I certainly wouldn't be able to afford it. I can barely afford the yearly increases now.

The language in this letter is irritating. Talking about the advantage of the "grandfathered" policy being that I don't have adopt some of the health care reform benefits. Seriously? They call that an advantage - for me? I see how it could be an advantage for them, but I fail to see how that could possibly benefit me.

The thing is, I don't even want to change plans. Considering my current health situation I'm in an ideal plan (in relationship to other plans out there). It is pretty expensive but there is a yearly cap that I always reach in the first quarter of the year and then I'm covered at 100% after that. Additionally, there is tremendous flexibility in where I can go and who I can see. I wish it included mental health care and infertility treatments but overall I'm glad to have the coverage I have.

BUT...

Now I'm just left wondering - what benefits will I not be eligible for? Is this even true? Can they really deny me rights because I've had my insurance plan for several years?

I'll have to add a call to Blue Cross to my To Do list for Tuesday and see what I can find out about what benefits I'll be missing out on.

Awareness Wish

I understand September is pain awareness month. Like many of you, I'm more than aware of pain - I have a close personal relationship with it. Because of that I've become very aware of those who are unaware of how real it is and how it impacts all areas of life.

My wish for this month's activities around the country is that those helping professionals, friends and family members who don't get it can experience an increased understanding of pain issues. The effect, positive or negative, from our loved ones and the professionals we depend on for help is profound.

I'm very thankful for the really positive support from my husband, other family members and friends. I hope you all enjoy positive support from at least some of the people in your world.

More PT

Back to PT again this morning. The exercises they have me doing at home are simple and small movements designed to strengthen my neck. I honestly don't feel like I'm actually doing anything productive but I certainly don't know anything about physical medicine. Instead the real challenge lies in relaxing my muscles between movements and during stretches, and of course being on my back on the floor. This is a good way to spark a migraine.

Yesterday was my first day on my own doing the exercises and I quickly learned that I was going to need to buy a timer. I have 11 exercises that are 30 seconds each. I wasn't able to concentrate on breathing properly, relaxing my muscles and counting evenly. The only timer I have is on the microwave and I will never be able to get up set the microwave timer and get back down in the correct position and properly relaxed in a timely manner. Only to get back up 10 seconds later to reset.