202nd Post - Guilt

I can't believe I missed it...the passing of my 200th post. This post here is my 202 - it just feels a little anticlimatic to celebrate it now. Oh well.

I managed to accomplish most of my cleaning projects over the weekend. The cleaning continues this week and will hopefully pick up a bit with some better days ahead. My head has been pretty threatening for the past 3 days - fortunately never developing into a full blown migraine. Instead I've had all the precursors and effects, just not the extreme pain.

With the onset of some good days I'm beginning to feel an increase in guilt over my unemployed status. There was a fairly large amount of self imposed guilt before when none of my days were good days. Now that I have those good days they are days sullied with this ugly guilt. I'm so very thankful that I've had the opportunity to stay home during this very very difficult time. I don't know what I would have done if we couldn't manage on my husband's income alone. Even though we manage to pay our bills, there isn't much left after that. We can't afford to do much and that causes stress. My husband works so hard and he has such a stressful job. I feel like if I could only work we would be able to live in a less stressful place, and do more fun stress relievers like vacations, movies and such. We would have more money to save for retirement and maybe could even afford to adopt a child.

The worst part about this guilt is the stress from feeling like I have no control over what happens. I don't know if I'm ever going to feel up to a regular full time job. Sometimes I think I should just do it anyway- you know, suck it up and just work through all the pain, fog and sensitives. I fear I would just be trading one guilt for another. The guilt over not contributing financially to our lives would quickly be replaced with guilt over not being able to keep up with things at home, including spending quality time with my husband.

I'm so thankful for my husband's appreciation of the role I currently play in our marriage. We both know things would be easier if I felt better and could work. But he doesn't make me feel bad about it. He really appreciates that things are taken care of around the house. I wish I was as kind to myself as he is to me. This is perhaps the most difficult part of adjusting to life with chronic pain. Some days I manage my guilt pretty good, other days not so good.

Do you ever struggle with guilt over the changes chronic pain has forced on your life?

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Cleaning Day(s)

This past week really kicked my butt, however I think I'm finally on the upswing. Still a little icky but not nearly as much as before. With my husband working from home this weekend I'm going to try and capitalize on the time to get some stuff done that doesn't get done often enough like cleaning the inside of the microwave and the counter top under and behind it.

My neck has been sore since I woke up - who knows what I may have done to it overnight. With this in mind I'm going to really limit how much I do. The goal I set seems reasonable right now but if I fall short there is always tomorrow. There is always more to do than what I can get done without requiring 3 days of recovery time, which only puts me behind again. Maybe if I say it enough, or write it enough I'll convince myself that it's okay that I never get as much done as I want to (used to).

What are your plans for the weekend?

Crossing My Fingers

Yesterday was tough. I usually have 1 or 2 really heavy flow days during my period and the migraines I get on those days are the most severe and the hardest to treat. I was half way through the day when I realized that was the kind of day it was going to be. I took out my migraine chart to check how many days I've taken the rescue medications and how many days left in the month to decide if I wanted to treat this one.

I was surprised to see that I had already had 14 migraines prior to that one. I hadn't really taken a count until yesterday but my impression of the month is that I hadn't had as many as usual. But the numbers don't lie, I'm not having fewer migraines. So what accounts for the perception of fewer migraines in January? That's when I realized, what has changed is the quality of the days I don't have a migraine. It used to be I had horrible days and bad day. There was always some lingering pain and nausea even if I wasn't having a migraine. But now I'm having horrible days, bad days, and good days. That's right, for the first time in years I'm having days free of pain, nausea and the other foggy symptoms of migraines disease. Plus not all of my migraines end up completely taking over my day. Some I'm treating with Ibuprofen and some I'm trying to manage with careful behavior.

It's been more than month since I altered my medication regimen and obviously my life has improved. I wonder if this is the most I can expect from my meds or if over the next month or so I will see fewer actual migraines.

My neuro doc here told me that even though in December my insurance company said no to Botox that we should try again because they address changes when the calendar year changes. They called and got a yes from my insurance company. Part of me doesn't believe this is true so I'll call and verify. It would be nice to have that as an option if I can't get more of the meds I'm taking now. Plus if I get relief that way then I can start taking my Bachlofen again. I'm not sleeping nearly as well and have an increase in jaw pain since I've stopped taking that medication. I tried stopping it to cut down on the extreme dry mouth that came along with the new preventive med.

I'm crossing my fingers for more good days.

A Lovely Idea

By now you all know how much I love watching things instantly on Netflix but I never imagined it would spark an idea. Just to pass some time I started watching Pawn Stars, a reality show centered around a family owned pawn shop in LasVegas.
The owners and customers are colorful people who are interesting to watch but what's most interesting is the stuff that comes through their doors. People bring all kinds of really cool old stuff, or sometimes stuff they think is really old and valuable but isn't.


The knowledge base that these guy on the show have is incredible. They know something about almost everything, no matter how random it may be. Sometimes they know enough to know they don't know for sure if something is real or not so they have experts who will come in and talk about the items and educate us all about the difference between real and replica.

I've always been drawn to antiques. I could spend all day walking around a big antique mall - I don't really care for the really high end stores where everything is $1000 or more. Instead I love to rummage through the packed cubbie areas sellers have set up in a big mall. I love the way antiques smell plus you never know when you'll come across something really cool and inexpensive. And even if you don't, you will always get the pleasure of looking at and touching all kinds of really cool stuff.

In the days since I ran out of episodes to Pawn Stars to watch I've been wondering if I could translate my love of antiques into a career. Assuming I get to feeling better of course. I've started thinking about what kinds of jobs work with antiques besides pawn shop as that is not work I could do. These antique stores usually seem to be manned with people who have a cubbie of stuff within the store. So there are people who go to garage sales and such to obtain cool stuff, maybe clean it up and then put together a cubbie to sell the stuff. And there must be jobs in auction houses and such too. That' s all I came up with. Am I missing something here or are there just not many jobs in antiques?

It may just be a dream but it would be wonderful if I could find a way to make some money doing something I really love. Dreams are lovely, especially on days like today when I'm fighting a migraine.

Oh The Things They Say

People are well meaning most of the time but the truth is most don't know how to best deal with someone who suffers from chronic pain. Honestly, who can blame them. I don't know that I would know what to say either. The impact it has on one's life is hard to even imagine for someone who hasn't experienced it themselves, many of us probably felt that way before pain became such a big part of our daily lives.

Inevitably people say things to us that are annoying, frustrating, dumb and even piss us off. The thing that bothers me the most is when people say, "have you tried..."fill in whatever common migraine treatment that is discussed on some 4 minute segment of a morning talk show. As if it never occured to me to see a doctor or do some online research, or try any of the known treatment options available. Come on, after 5 years of this it is safe to say that anything a well person knows about migraines is something I already know. Sometimes the "have you tried..." is a little more off the wall like "have you tried eliminating red dye #5 from your diet? I once knew someone who was allergic to red dye #5 and when she stopped taking it she felt better." or "have you tried moving? You might just be reacting to something in your home."

I do know all these people are well meaning and just want to help. But I am not seeking suggestions from healthy people who are not doctors. I love to hear about and from other people like me or from medical professionals who deal with people like me. Suggestions from them are always welcome. But there is such a big difference between the tons of people in this world who suffer from migraines and people like me who have migraines more days then not. It is not the same thing, it just isn't. I think what bothers me so much about these statements is that I feel blamed when people say them to me. I feel like they are saying, well if you only put a little bit of effort into treating this, or figuring out what's going on then you could feel much better. If only I had watched that short segment on the 11 o'clock news or on the doctors that's geared towards the common migraine sufferer then I would know how to handle this. Gosh, why didn't it occur to me?

Couple that annoyance with the dwindling patience that has developed after years of chronic pain and the weariness of dealing with it and you can see how this line of unsolicited suggestions really get under my skin. I try really hard not to react with frustration when this kind of thing is said. My migraine brain isn't witty on command so I never had a great response, which is probably for the best. After all the perpetrators are well meaning. Normally, I'll just thank them for their suggestion or explain that I have tried whatever and it didn't work, or, in the case of the strange suggestions, I will stear the conversation to the topic of their suggestion, glossing over the relevance to me entirely.

Roku

Recently my husband and I went searching Netflix for some new stuff to watch instantly. They are constantly adding new titles and so you never know what kind of gems you will find. In doing so we discovered that neither of us had seen the series 24 with Keifer Sutherland.

Have you seen it? All I knew about it going in was that the events unfolded in real time over 24 hours/episodes. Sounds like a concept that could go either way. An awful lot of activity would have to happen in that time in order for it to be interesting. We were immediately hooked. It drew us right in and we are already working on the 3rd season.
I love this show and even more I love Netflix streaming instantly. Whenever I'm not feeling well, which is frequently, I can always find something great to distract me on Netflix. Last year we got one of those Roku boxes so we could watch the netflix stuff on our TV. We have gotten so much use out it that it was more than worth the price.
Perhaps when our DVD player gives out sometime in the future we'll get a blue ray player and just use that to get our Netflix stuff, but for now we're super happy with Roku. It has been a wonderful alternative to expensive cable channels.

Random Stuff

I'm having a tough day that started with waking up with a migraine. I really needed to run to the grocery store to get a couple things so I went ahead and showered and got out of the house. It's oddly warm today in the upper 40s so I started getting that spring cleaning feeling. That actually ended up being a bit of a blessing as I needed to do some light cleaning around our windows.

You see, when we first moved into this apartment a little more than 2 years ago it was our dog's first experience with apartment living. She has some anxiety issues and is super protective of us and our space. It didn't take long for her to destroy the bottom of the blinds that stood between her and her ability to see outside. We've known we would be responsible for replacing the blinds when we moved out. Now more than 2 years later the people at the apartment complex have decided it is an eye sore and needs to be addressed right away. We really don't mind doing that, but we spent a couple hours just a month ago putting up that shrink plastic stuff to better seal out the cold. It didn't bother them for the last 2 years but now suddenly it's quite pressing. All we wanted was another couple months when we will be taking the plastic down anyway. But they are unwilling to be flexible.

Now I'll have to redo all of that. The maintenance guys will come and actually replace the blinds but I needed to clean around the windows and first thing in the morning I'll take the plastic off. Then we'll have to start over with the plastic. I'm kind of dreading the whole process because it means taking down the room darkening shades and spending too much time in front of the big bright windows.

Anyway, I'm glad for the motivation from the warmish day but now I just feel so nauseous and am not sure I'm making much sense so I'll just sign off for the day. I hope you ladies are doing well.

Oh Baby...

My husband and I started trying to get pregnant right away after we got married, more than 3 years ago. We shared a strong desire to have at least one child. But over the last 3 years I've struggled with the question of should I try to do this considering my migraines and such. Much like the ups and downs of my sense of hope for relief I've at times thought it would be fine and at times thought it was a terrible idea - and everything inbetween.

We tried and took a break from trying and then back to trying again. After I lost one of my ovaries last January we decided to try all 2010 and then start treating my endometreosis in hopes of keeping my other ovary. Obviously we were not successful in making a baby.

My GYN doc said we should give it a couple more months and start using an ovulation kit to tell me exactly when I'm ovulating. I had already been doing basil temperature charts for more than 2 years but she said this would be more concrete. So I've been testing myself daily. Last week I had a spike in my temperature (which is supposed to coincide with ovulation) and started to experience other symptoms of ovulation. But my tests all told a different story.

It appears I may not actually be experiencing the full burst of hormones required for normal ovulation. Something is happening - obviously. I'm still having periods and experiencing all the symptoms. My husband and I have talked about our struggles to get pregnant on several occasions and have come to the mutual conclusion that we'll be okay if we can't. We love each other and really like each other and our life together. We are not wealthy by any stretch and we both really value being financially stable. Neither of us feel like we need to drop everything and put all of our retirement savings and investments into expensive, invasive procedures to help us get pregnant or adopt.

Part of me feels the loss of my right ovary. It doesn't make any sense, I was hardly aware of my ovaries before it was destroyed. Now to think that I'm not really even ovulating, well, I feel sad about it. And that makes even less sense. I've been very aware of my intuition telling me that we can't get pregnant for more than 6 months. This isn't a surprise to me. I don't feel like I can't have a great life if I can't have children. Meanwhile, I'm seeing all these people around me having babies; friends, celebrities, strangers at the store. Each time I feel pangs of sadness and longing. Sometimes I think about what kind of things I would want to teach my child, or things I would like to do with my child. I see baby stuff in stores and wonder what it would be like to have a baby. I wonder if I would be any good at parenting. I wonder what kind of foods he or she would like or dislike. I wonder who he or she would be. I even manage to worry some about all the dangers he or she would face (online predators, crazy people too wrapped up in texting to pay attention on the road and stuff like like). These feelings don't make any sense but I'm feeling them anyway.

Kitchen Competence

Last spring I made some pretty big changes in my diet. I cut out meat entirely, almost stopped consuming simple sugars and seriously increased my whole grain and vegetable intake. This has required me to seek out and try new recipes, really learn about food and nutrition for the first time and expand my kitchen skills.

Today, not quite a year later, I finally feel like I know what I'm doing. I'm not afraid to alter any recipe to suit my tastes or my desire to consume healthy foods. That isn't exactly new this month, I've probably had this competence for several months. But today I really feel it and I think that's because now I'm also enjoying food again, for the first time in several years. Oh how I'm enjoying my enjoyment of food!

Even though I haven't seen a change in my migraines as a result of these food changes, my body certainly has changed in response to the healthy foods. My sweet tooth still exists but now I prefer the natural sugars. I feel like food has a heightened flavor now, as if the absence of the processing chemicals allows me to better appreciate the natural flavors of food. I find that when I crave food now, I'm craving healthy stuff instead of the junk food I used to crave. Even my meat loving husband has experienced some of these changes in his food preferences.

This time of year my food focus has been on casseroles and soups. This picture is a Spinach and Egg Noodle Casserole from Rachael Ray's magazine. I've made and enjoyed this several times since November when I found it. I used whole grain egg noodles instead of regular ones so it looks a big different when I make it, but you get the idea.

Do you have a favorite casserole or soup?

Blog Carnival

The new ChronicBabe Blog Carnival is up! This first topic of 2011 is Making The Most of The New Year.

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Adjusting Meds

I met with my neuro today. I was a bit nervous going in since things changed so much since my trip to Minnesota. It took a bit to get caught up and even as I was talking about the changes in my migraines over the past 3 weeks or so I was noticing even more had changed than what I was thinking.

The first several days of January were kinda rough but I also was dealing with period stuff then. I'm having headaches often before bed but am so drowsy from the Amatriptalyn and Bachlofen I take before hand, I'm getting great sleep and waking up feeling okay. As my nausea has diminished in the past few weeks my appetite has been better. I had forgotten what it felt like to really enjoy a meal. The only downside has been the extraordinary drying effect in my mouth. I bought some Biotene mouthwash and have even been chewing gum (which isn't good for my TMJ) to manage the dryness. These tactics are not making a big enough impact.

My doc suggested that I dial down the dosage of the Amatriptalyn because having such a dry mouth isn't good. I don't feel great about doing this because of the positive impact this new strategy has begun to have on my migraines and, more importantly, on my quality of life. At the same time I don't want to lose my teeth because I can't maintain a healthy environment in my mouth. I got to thinking on the way home that instead of dialing back on the Amatriptalyn I would instead dial back and stop taking the Bachlofen and also see about getting more Biotene products, such as the toothpaste and mouth spray. Maybe if I do those things I can keep my present prevention dose where it is. Dr. Garza (the Mayo doc) was pretty clear about needing the higher dose for the drug to do what it needs to. I wish I could have discussed it with the neuro doc here but my brain isn't that quick. Oh well. I feel competent enough to try this on my own.

Feeling Wainky

I think I ate something kinda funky on Sunday morning. My husband and I went out to breakfast, which is my absolute favorite meal to eat out because I love breakfast foods but get so grossed out by raw eggs that I can't eat the ones I prepare. I ended up indulging in a wonderful piece of french toast, some scrambled eggs and hash browns - yum!

About 4 hours later I started feeling very wainky and ended up cleaning my system pretty thoroughly and generally felt bad for the rest of the night. This morning I'm very hungry but still don't feel very good. I'm slowly trying to take in some food but all this wainkiness is hard on the head.

I just realized this morning that I forgot to get my new safety inspection on my car. My car sticker shows that my last inspection expired at the end of December and so I needed to get another one. I mean ti t do it last week and don't feel up to it today. One would think as long as I'm not driving around there is nothing to worry about. But there is a cop who likes to walk around the parking lot of our apartment complex and write tickets for all kinds of plate, sticker and car issues. To me that's like getting a ticket in your driveway - it's just not right.

Hopefully she won't be by today. If I don't feel better by this afternoon I'll go first thing tomorrow morning.

More Skype in the New Year

I got to thinking today about how I had wanted to see so many of my friends during my recent trip to Minnesota but ended up not being able to because of how I was feeling. Being able to sit down and talk with my friends is a great stress reliever. Good, old friends are a wonderful treasure and I am so very thankful for the ones I have. Lamenting on this vein for a while today it occurred to me that I should be taking advantage of the Skype technology to do the next best thing; video chatting with my friends.

I don't know why I didn't start doing this in 2010 when we got a web cam. I don't even know if all of my friends have web cams too, but I bet some do. In the year ahead I am going to make the most of all the technologies I have to enjoy more communication with my wonderful friends. It can only bring my life joy and have a positive effect on my health. Why wouldn't I?

Don't you love technology?

Sweet Potato Pie Goodness

I wanted to share my sweet potato pie recipe with you all. The one I've been consuming so much of since I returned home from Minnesota. I got the recipe from my mother-in-law several years ago. I don't know much about sweet potato pie in general but I understand the topping in this recipe is not usual, but certainly is wonderful. Enjoy!

4 or 5 medium sweet potatoes

1/2 C brown sugar

1/2 to 3/4 stick of butter - softened

1 tsp cinnamon

3 or 4 slightly beaten eggs

Beat with a mixer, cooked sweet potatoes, sugar, eggs, spice & butter until smooth. Pour into unbaked pie shell.

Topping

3 or 4 TBLS butter - softened

1/2 C sugar

2 C Corn Flakes

Combine the butter, sugar and corn flakes in a separate bowl. Cover the pie mixture with the topping and bake at 350 degree for 40-45 minutes.

A Bumpy Start

I had PT again this morning and had the chance to talk with my therapist about putting PT on pause until I can get things under control with my anxiety and muscle tension. It actually went pretty well. She gave me the name of a doc she knows who does neurological biofeedback on folks like me. I was relieved that she was also feeling like I had plateaued but sort of wish she would have said something first. If she was thinking that she should have said something...the cynic in me thinks it is all about money.

Anyway, I'm feeling like a bit of a weight was lifted. These appointments are time and energy consuming, which is okay as long as I am seeing a benefit. I'll have to find this biofeedback guy and see if it is something my insurance will cover and if he thinks I can be helped. If no is the answer to either of these, I'll just wait until my neuro appt in a couple weeks.

Today is the 3rd day of the new month and so far I've had 3 migraines. I got one on Saturday night but decided not to treat it in hopes it would resolve on it's own overnight. No such luck. I woke up feeling pretty bad but was able to get on top of it with my rescue med on Sunday. This morning I woke up feeling like a migraine was on the way and sure enough I've slowly been feeling worse. I'm trying really hard not to treat this one as I can only treat 8 more over the next 28 days (not that I'm counting:). My allotment of 9 rescue meds a month have me behaving like a hoarder with my meds. But even more than that I'm working hard on staying distracted so as not to start worrying about how many migraines I'm going to have this month. I don't know why I get so scared about having a migraine that I can't treat. The month is off to a bumpy start.

Hopefully tonight's episode of the Bachelor will keep me distracted until I can fall asleep tonight.

First Day of the New Year

Welcome 2011!

I hope everyone had a safe and relatively pain free New Year's Eve. My husband and I had a nice dinner and played some Yahtzee before retiring in front of the the TV. We made it until about 11:30pm (much later than I thought we would have). I had a few sips of wine with dinner - not wanting to cause any problems with my meds or my head. It was nice to at least enjoy a small taste. Despite having woke up with a headache I managed to remain migraine free for the day. All in all it was a pleasant and relaxing last day of the year.

The only thing missing was sweet potato pie but I'll make another one today. YUM!

The business of the new year is kind of exciting, in the way that preparing for the start of a new school semester used to feel. The new calendar gets marked up and displayed. A new database needs to be developed to track spending and income. And we need to suddenly adjust to seeing and writing 2011 instead of 2010.

I'm still evaluating myself for anxiety. The closer I look at the big picture my muscle tensions and chest discomfort and stress responses really do resemble anxiety as much as anything else. I can see how the smallest changes cause a physical response. I can be lying down watching TV thinking that I'm relaxed but when I pay attention I see that I'm actually engaging my neck muscles and often other muscles in my legs or arms. If I'm not completely focused on relaxing my muscles then they are tense. And any small thing that happens, like the dog barking will heighten that response, sometimes leading into the chest discomfort.

I'm finding that I really don't have much control over my body - far beyond the obvious lack of control over my migraines. I can't help but wonder if my lack of awareness means I should be on medication for this for a while. After all I can't possibly spend every moment and all my energy on relaxing my muscles. I would never get anything else done.

My progress in PT has been really slow. My therapist says that we are trying to strengthen the neck muscles and loosen the thoracic spine. Basically she stretches the spine and then I do neck exercises. It has made some difference in my hand and arm discomfort but I'm still having lots of pain in my neck/shoulder muscles along with frequent spasms. Basically I feel like I'm spinning my wheels at this point. I wonder if this is because we have not addressed whatever is going on in my brain - the stress or anxiety response.

Okay, at this point I'm just babbling.

Happy New Year everyone!