Sorry for the Absence

To anyone who might read my blog, I apologize for my absence as of late! The last post I had written spoke about the possibility of getting liquid oxygen to treat my cluster headaches. Within a day or so of writing that post, I found out that the insurance will not cover liquid oxygen for cluster headache, no matter how often I use oxygen to abort my attacks or how many tanks they must pay for. This was unfortunate and rather depressing! So I never updated the blog after that, and then things got very busy in my life and I was away for most of the month of December. I'm back now, so expect to see more posts from me in the near future! Thanks to anyone who has read!!

May Get Liquid O2!! (I'll keep breathing now! heh heh)

Image Credit Note the difference in size between the portable liquid oxygen container (left) and a regular E size oxygen tank. Then read on for why I'm excited about liquid O2! :)

Today, the smallest thing just made my day....and I feel like such a dork, but who cares? I've mentioned here that I have chronic cluster headaches on top of my nearly 7 year old constant migraine (New Daily Persistent Headache). The clusters are severe, stabbing, get-it-out-of-my-head-NOW attacks that last 45-90 minutes or so, for me are 80% on the right side and 20% hit the left, and are the most intensely painful things I've ever experienced. They come, for me, anywhere from 2-8 times a day, but lately about 4-5. I started suffering from them in late 2003, a few months after a figure skating injury that gave me a concussion. They say 50% of sufferers have some past history of head trauma. Clusters are believed to be caused by a faulty hypothalamus, so perhaps the head injury is the light switch that turns the demon on - I don't really know.

One of the best treatments for cluster headache is oxygen: 15 litres per minute (LPM) via nonrebreather mask or, even better, a clustermasx for about 10-20 minutes or so. I've been using this therapy since January 2004, and it has been a Godsend for me. At any given time, I have had E tanks, which are the size tanks you see people pull around on little carts or on the back of wheelchairs, up to H tanks, which are gigantic tanks that look like the tanks that fill helium balloons. Despite the small size of the E tanks, they still aren't very portable. I'm fortunate in that I work in a hospital and work closely with respiratory therapists, who have always said they will help me whenever I need at work - and I do keep a nonrebreather mask stored in my locker for those rare occasions when my CH hits break through my frova or amerge that I take on the bad days.

When I went to England last year, I got to try my friend's liquid oxygen for the first time. That was the coolest thing ever. Basically, there's one big tank that sits at home and is replaced regularly by the home O2 supplier, and then there are little canisters that can be refilled from the big canister. The little canisters are pretty small (about the size of a 2L bottle of soda) and have a strap for easy carrying. You have to keep them upright (or they make a very obnoxious squeal), but this is not really a problem. I know this may sound silly since oxygen is oxygen, but I swear that liquid O2 worked better for me!

When I came home, I asked the neuro nurse practitioner about trying liquid oxygen, and she said she'd look into it. At the appt after that, she said that I wouldn't be able to get it covered, and that was that. Well, since the past few days my clusters have been breaking through anything and everything I throw at them, today I took a little trip down to the O2 supplier to get 3 of my empty tanks replaced. I was having a problem with the 4th full tank because washer or no washer, whenever I hooked the regulator up it was bleeding O2 into the air.

At the O2 supplier, the first thing they did was give me 3 fresh tanks. Then the guy gave me the right kind of washer (I didn't even know there were wrong kinds of washers!) for my tank and a spare - and it fixed my tank right up! It works perfectly now! I asked one of the ladies working there if they had liquid O2, and she said they did. So I further asked her if I could get this, if I had a prescription for it. She checked my insurance (great insurance, which I pay good money for!), and she said that if I had a prescription, they would just need to call and authorize it! Awesome!! I go to the neuro NP on Thursday, so I'm definitely making sure I get that script!!

I know I know - how can something so trivial make me so happy? Oh it can... Clusters are one of the most painful conditions that humans experience, and when you live every day in pretty bad pain, anything that helps take that away is greatly appreciated!! If I get the liquid O2, it's going to become my new portable companion, since I'll be able to have my O2 in my car whenever I need it, instead of being unable to lug the E tanks back and forth to my parents' house and other places I travel. This is exciting!

In other news, I will have to write later about taking my cat to the vet today. WHAT an experience.....he was sooooooo bad! I have never seen him behave so badly!! Then of course, once we got home, he pretended that none of it had happened. He didn't even get a shot at the vet! What a trouble maker....! hehe I have to go fill my car up with outrageously expensive gasoline now and then go to the food store for a few items as this is my busy week at work and I need to have food for lunch! Will probably post again later with the bad kitty story!!

Keep It Fun!

Yesterday, I got completely depressed as I reverted back to my normal ways of sleeping in, getting up for a little bit, then napping most of the day. Then today, I got up this morning, went running, paid bills, went to a psychiatry appt, then ran all sorts of errands, and even made myself dinner. But I realized something that I discussed both with my psychiatrist and with my mom. I used to get very upset with myself when I would just lounge around, but somewhere along the line I stopped beating myself up for it and then just moved towards acceptance that I was exhausted a lot of the time and fighting chronic illness, so I didn't need to push myself so darn hard. When I decided to start running and attempt to be more active once again, I found myself yesterday becoming completely depressed because I did nothing once again.

What I don't want is for this to become some big struggle. What needs to happen is that on the days when I feel well, get out of bed, and go for a run/do other productive things, I should be proud of myself. However, on the days that I don't do these things, I don't want to spend the day depressed and beating myself up about it. In short, I need to keep it fun. I want being more active to be something I look forward to doing and enjoy, as opposed to it being something that I hold myself to and become angry over if I don't live up to expectations!

Today I actually ran a little farther than I did the other 2 days, and I also wasn't having as much trouble with my breathing. Granted, it was a bit warmer today than it has been the previous times I've gone running, so that may have helped! This afternoon, I went to target, and I did end up getting some running pants, a couple of tops, and a fleece zip up jacket. Gives me something to look forward to! Wearing a new outfit while running! hehe Despite it being a bit warmer today, I did actually wear some lightweight gloves.

I did bill paying tonight, and that is always such a huge stressor for me! (And completely the reason why I'm still awake writing this as opposed to sleeping when I have to be up at 5am for work!) A little over a month ago, I went back to 40 hours at work, which was an increase from 36 hours a week. In short, I went from 3 12-hour shifts a week to 2 8-hour shifts and 2 12-hour shifts a week. My last paycheck was even better than usual as I had put in 4 hours of overtime. Over the summer, I nearly had a nervous breakdown due to financial problems. I was deep into credit card debt and not getting anywhere in trying to get out of it, and I was really having a hard time making ends meet. Part of the problem for me is that I have all sorts of medical costs on top of usual cost of living. I really try not to buy many things that I don't need, but with high rent and lots of bills, I was having to charge things like groceries and medications. This all got me into significant trouble! Plus, due to making late payments on my credit cards while waiting for my paycheck to come in so I had money to pay the bills with, I ended up getting my interest rates raised quite significantly.

I finally went to my parents back in July to discuss all this with them. I was so stressed out that I could hardly see straight, but my parents listened, no matter how bad it was, and tried to help me with it all. I cried and flipped out numerous times, but they were always there to try to calm me back down. My dad helped me get on track to take out a loan to pay off the credit cards, and that has helped tremendously! My mom and I sat down and made a budget including every single little cost that might come up. Before going back to 40 hours of work a week, I only had about $100 left at the end of the month, and this did not include buying gifts/cards/contacts/emergencies/savings. I'm doing a bit better now that I've gone back to 40 hours, but there is still quite a bit of stress when it comes to bill paying!

A few months ago, I also had to get a new car because my old one died. We know a guy who buys cars at auctions, fixes them up, and then sells them for a reasonable price, and he's gotten all our cars for us. He got me a great deal on a Nissan Maxima, and I love my car! I've never had a car this nice before! Unfortunately, my dad sold his explorer and my old car in order to pay for the Nissan, and after everything was said and done, I owe my parents around $1500 for the new car/repairs to the old one before selling it. This really is nothing, and I am soooooooo greatful to my parents for helping me out with this!! You could say that I'm guarding the new car with my life!! haha This past month, I finally started paying my parents off for the car. They weren't hounding me about it at all, but I just had to get settled with my higher paycheck in order to have the ability to start paying them back. I won't be paying it off quickly, but I am determined that I will pay back every penny....and I started by giving them $100, which wasn't bad!

I guess what has me stressed tonight is my stinking CompUSA bill for my Mac Powerbook. Almost 2 years ago, I bought this laptop with a 24-month interest-free credit plan. I am down to the last 3 months and have very little left to pay on it. However, tonight I was looking at the bill, and it said my deferred finance charges are a little over $700. It said on the statement that in order to avoid paying the deferred charges, I need to make sure my promotional balance is paid off in full by January 16 and also that my payments are received on time. Now, in the past, I know I have made late payments back when I was having all the trouble, but I've never received anything saying that I will now owe all these finance charges, and I can't tell from this statement if they are going to hit me with this or not. I sincerely hope not!! So now I'm starting to get panicky again!! I have 3 payments left on the laptop, and I will have it paid off in 2, so at least I will definitely have the balance paid off in time. There's nothing I can do about this tonight, so I guess it is best not to get myself all worked up!

At any rate, I need to stop writing and get to bed, since I have a long day of work ahead of me tomorrow!

Today's Goals Achieved

Image Credit

I know today is only one day, but I actually achieved my goals today! My mom ended up waking me around 9:30am, and I was out of bed before 10! Good first step... After having breakfast, I ended up going for my run. I actually ran further today than the other day when I was running for the first time, so that was a good accomplishment. Until later on today, I didn't have a running playlist on my iPod, so I was running to the same song, repeated about 4 times, which gave me enough time to run as much as I was able. The other day, I did not run long enough for the whole song to run through even once, but today I accomplished that! From my parents' house, I ran for the first 3 minutes or so, then walked some. I ran 2 other times, including down one full street which was probably about 400 yards or so. I know it isn't that far, but it was for me! I still had trouble breathing and that was the one thing that kept holding me back, but I was happy that I was able to run a bit farther. Tonight, I feel like one gigantic bruise, but I just took some Aleve, so hopefully it'll feel better soon.

After running, I came in and my mom was doing her pilates, but we ended up sitting at her computer and buying upbeat songs on iTunes to add to her running playlist. We ended up with 41 songs to run to! So now I have a nice upbeat playlist to run to and won't have to run to the same song on endless repeat any longer! My mom and dad do their running inside on the treadmill, but I truly think it's much more exciting and fun to run outdoors! My mom agrees, but she thinks that I've definitely picked a challenging time to start running as the weather is so cold. Pretty soon, I'm going to have to start wearing gloves and a fleece headband to keep my hands and ears warm! I actually need to get some pants to run in instead of shorts - my mom lent me a pair of her workout pants today, but I'll have to get my own.

This afternoon, my mom and I actually had another really good heart-to-heart conversation about things going on with me lately. I talked to her about some of the stuff I've been working on with my psychiatrist lately, and I think she was really glad I told her some of this stuff. She said that I should feel that I can come to her anytime with stuff that's bothering me or that I'm working on because then she'll be more aware of it and maybe be able to help me. This is true because some of the things I'm working on concern my relationship with my parents, and my fears about disappointing or upsetting them by the choices that I make. My mom has the same fears about her interactions with people, so we talked a lot about how becoming more aware of these things can be the first step to making it better. It was a really good conversation, and I'm really glad that I was able to talk to her about all this stuff!

I ended up staying at my parents' house through dinner. (And yes, we did end up watching the previously recorded episode of "House" that I mentioned in my last post!) Dinner was great, and then I met up with my bf at the King of Prussia Mall to look for some stuff. He needs a new cell phone, and I need a new laptop battery for my Powerbook, which now only lasts about 5 minutes before dying, if that. He's decided to order a cell phone online instead, and the Apple store was closed for renovations, so I'll have to wait a bit for the battery! I did get a Christmas scrub top, which made me feel good! :) I actually have never had one of those, and this year I'll be working Christmas for the first time since I became a nurse.

Once we got home to my apartment, Jason created his first blog! He'd asked for my help in creating it, but then got annoyed when I tried to help him set up some of the elements! haha... That's okay - he isn't so sure about all this blogging stuff as it is! He just hasn't gotten addicted yet like the rest of us blogging addicts! :) Now we're settling down on the couch to watch "Troy" which is one of his favorite movies, but not one I've gotten into much! Tomorrow I'm going to try running again (with my new playlist!) and then do some cleaning around here! Not sure what else is planned, but we'll see! Sorry for the mundane day update, but hey, it's my blog and I can write what I want, right?? hehe Have a great night everyone, and don't forget to turn your clocks back!! (Extra sleep!! YIPPEE!! Just what I need! lol)

What do you do when you are absolutely free to choose?

Image Credit

This is a problem for me... I know it should be a simple answer: Do whatever it is you feel like doing. The problem is that when left absolutely free to choose, I would generally rather sleep. Most days (when not having to work at 7am), I set my alarm for around 9-10am or so, hit the snooze until around 11 or noon. I then get up, turn on the tv and check websites for about a half hour or so, and then I fall back to sleep. If I actually get out of bed on many of those days, it's around 3 or 4pm, in order to move to the couch, watch movies, and take a nap with my cat. Does this sound familiar to anyone else?

The thing is, the thought of actually doing anything other than sleeping is so overwhelming to me because I feel positively exhausted. Now, I have tried various things to "get myself moving." I've mentioned my bf is a physical therapist, and he feels that if I get more exercise, I'll feel better. This is what spurred me to start walking more often, and even to go running the other day. Unfortunately when I get home from exercise, I often feel ready for a nap. What is up with this fatigue? It would be one thing if my sleep was actually restful, but it's really not... The more I rest and sleep, the more exhausted I really am. I realize this is a common known fact about sleeping too much...

So what is it? Chronic pain? Depression? Pure laziness? A combination of all of those? Perhaps...although I don't like to think of myself, someone with 2 bachelor degrees and who was once truly a very driven person, as generally lazy. I'd say there have been other changes to turn this once type-A person into someone so exhausted that she can hardly get out of bed most days. My psychiatrist seems to think it is because I would rather sleep than deal with some of the more difficult things going on in my life. I would agree with this at least to some degree!

Part of the problem is that I don't really know how to be the driver in my own life. I'm so used to having my time structured for me on so many different levels. When left free to choose, all I really feel is empty. And in order not to feel the emptiness, I sleep. Over the past few years, I have cut out most of my friendships, and the closest relationships I have now are with my parents, my bf, and my psychiatrist, frankly! So, I guess that would leave a person feeling somewhat empty... I do actually like being alone a lot of the time, but I really do not like the empty feeling... My psychiatrist feels that I need to learn to tolerate the negative feelings that I would rather sleep through. True, I'm sure.

Whilst this is all lovely to analyze, this used-to-be-overly-driven individual has a great need for fixing and eliminating problems, and then moving on. I don't really want to just pick apart the reasons I would rather sleep - I would ultimately rather fix it. My psychiatrist asked me if I get much exercise, and I explained about my attempts at taking walks and running. He asked if I could do these things in the morning in order to get out of bed, and I explained that I have seriously tried to get up for these things, but it is just not working. I am here in part because what I am doing is not working. This much is clear. My bf tonight had a good suggestion. He said that I aim for too lofty goals. He noted that every day this week, I have gotten up around noon. So instead of setting my alarm for 8 or 9, I should set it for 11am. If I'm still not getting up, then set it for 11:30am. Make baby steps; aim for short term attainable goals and then move from there. I told him that sounds like a great idea! He said, "That'll be $50 and I'd like to see you twice a week for life." Ha! What a comedian... :O)

I actually spoke about this issue at length with my mom tonight, as I am out at my parents' house for the night. I don't normally talk about my emotional turmoil with my parents because I don't want to upset them, but once in awhile I feel the need to bring in recruitments when I'm really struggling with something. Last week I told my mom that I started on buspar for anxiety, and that was kinda a big step, too. I guess I'm trying to make some changes... My mom and I discussed the fact that maybe I need a hobby to fill in my empty time...something that I feel like getting up for. One would think that piano could be that thing for me, since it's something that I love. However lately piano has done nothing for me. Yesterday I played for 10 minutes before I couldn't take it any more - I got fed up with it quickly and it just wasn't filling the void I was feeling. We talked about possibly setting aside one day a week to teach piano lessons, but I talked about my fear of resenting this obligation. We discussed being careful for what you wish! We discussed my going back to get my masters, because even though I don't want to be a student for life, I do actually miss school, and that would fill some of my feelings of purposelessness...although I'm not sure if school would fill it in a good way or in a "hide it with busy-ness" way. We also talked about looking into some sort of class in the community: exercise, dance, hobby, something. I do know that these classes are offered in my area, but part of the problem is the unpredictability of my work schedule. I still think that all of these things are worth looking into.

I'm not going to solve this problem with my post tonight, but I felt like writing about it and getting it out. It actually is some sort of progress that I'm talking about these things with my family. Part of this may be coming from the fact that my psychiatrist told me today that he will be going away for a couple of weeks, and that always leaves me feeling a bit panicky. (However let it be known that I cannot STAND to feel that dependent on another human being... Interestingly enough, some of my biggest issues are with attachment and fear of abandonement, but I really do utterly despise being dependent on others for anything. So much of my life is a contradiction of concepts...) I realize he has every right to live his own life, but lately it seems like he tells me the week before he's going to be away, and then I have no time to mentally prepare for it. Instead of feeling completely alone, I have opened up some of my more recent issues with my family and bf so that I do have others to lean on in his absence. I'm not sure if this is a good or bad thing, but I think it is ultimately good. I said above that what I have been doing is just not working for me, and so much of what my psychiatrist and I do is analyze why I feel a certain way. But now I can bring in my family and bf to help me pull through some of it. If they are aware that I am working on something, then maybe they can help me out with it a bit. Besides all this, I have many other things I'm trying to "work" on in some way, but this is more of a pressing matter. I cannot live with myself wasting away my life like this any longer. Other things require acceptance as opposed to "fixing", but this issue really requires some active work.

I actually do feel better writing some of this out... My plan for tomorrow is to get up around 9:30am (I know I will because I'm not alone in my apartment like usual - my mom will actually make sure I get up, no matter how much of a fight I put up to leave me alone to sleep...). I then would like to go running - even brought my running clothes and sneakers with me, and iPod too! My mom also suggested doing some 20-minute pilates, so maybe we'll do those together, too. She would like to get back into those, and I mentioned that I would, too. Then we plan to watch "House" that they recorded on DVR. My bf is coming over in the afternoon after work so that we can go get him a new cell phone and then hang out together. This all gives me some sort of purpose to my day tomorrow, which is a start! But how to carry this all over to my solo life when I truly am all by myself and have nobody pushing me to get out of bed? That's going to take a lot of work, but I'm open to suggestions.... That is, suggestions other than "Just do it" since that hasn't been working out so well for me, no matter how badly I want it to!

Working on Fave Blogs List

Just so everyone knows, I'm working on my Fave Blogs links list to the right. If you've decided to follow me to this new blog, and I haven't included your blog yet, no worries! This list is just a work in progress that I'm putting together quickly before going to bed!

Running: Talk about breathing!

I used to run, and it's something that I've always enjoyed. I ran track through CYO in junior high, but that's not truly the running I enjoyed. What I enjoyed was my time running in college. I attended a large school in a beautiful rural setting. I often would come home from classes or the practice room (I majored in piano performance), and I'd take some time to go running on a trail behind my apartment complex. On days when I wasn't up to running, I would at least take a walk. I coupled that with 20 minute pilates sessions, which I truly feel helped with my body's strength and tone.

So what has changed?

The last 6 and a half years have been wrought with chronic medical problems for me. It all started with a chronic migraine that I've had since 2001, but I'm not going to focus on that now. In 2004, I was diagnosed with bilateral avascular necrosis of the femoral condyles, and in the spring of 2006, I was tentatively diagnosed with rheumatoid arthritis, and am currently on methotrexate. Between these conditions and several other health problems that I'm not even going to touch on right now, I must say that I've gotten away from running and exercising in general! Over the years, I've tried off and on to get back in shape, but it's an uphill battle. I fight against exhaustion and fatigue. Sometimes after I work, I can sleep some 20 straight hours because I'm so exhausted. And I realize that the more I sleep, the more tired I feel, but it is hard for me to muster up the energy to be active.

My boyfriend is a physical therapist, and while we've only been together the past 5+ months or so, he's already set on getting me to be more active. Just tonight he said he was proud that I've been more active lately. He doesn't really think I should run, since I have the AVN of my knees. I had core decompression drilling in June of 2005, and my orthopedic said that I can do whatever I feel up to. He didn't say I should avoid running or any particular activity at all, actually! The fact of the matter is that I haven't been running much. The first year after the surgery was rough - I spent a lot of time on and off in physical therapy for various injuries. But at this point, my knees actually feel better than they have in years. I really feel like I've got new legs some days! haha...

Lately, I've been taking a lot of walks. I live in a small town outside of Philadelphia, and it's a really nice town to walk in. I have a typical path that I like to follow: cross my apartment complex, down into town, follow the main road through town out by the sports fields, walk around the fields and past the library, then cut up one of the roads back up a hill to my complex. I call this "my loop." I'd say it's probably a couple of miles, maybe? I don't actually know for sure! The hill at the end can be a bit formidable! When my bf and I go for walks together, sometimes I'm huffing and puffing as we go up the hill. We recently went walking in the rain, and I decided to run up the hill to get home more quickly. I was wearing flip flops and running on the sidewalk in the pouring rain, while my bf was cheering me on. Even though it was just a silly run in the rain, his encouragement actually got me to the top of that hill without stopping!

Today, Halloween, I decided to go for a run. I'm not exactly sure what motivated me... Some of my favorite bloggers have been writing about running as of late, and my bf is just starting training for a marathon next year. I often read that people are struggling to start running, and then once they've been doing it for about 6 months or so, they truly enjoy it and can't live without it. I also spent the entire day on the couch being a blob, and I just needed to do something active to give my day some meaning. I was on a cluster headache message board, and I read about how someone used a technique to block against the pain of his chronic migraine and cluster headaches. I have both of those conditions, and blocking pain is often very difficult. He was talking about how, in the absence of any treatment to provide relief, he focused a great deal on mindset and on keeping his mind off the pain. He said that he has found he can do a lot more once he learned to do this.

So I decided to try it! I went for a run around my loop. Granted, in the end, I only ran about 1/4 of the distance, but it was a start! What held me back was actually not physical pain at all. I was stopped by reflux (felt like I was going to puke after awhile!) and my breathing, as I tend to get asthma related to bad reflux and activity in the cold air. (OK I realize this is only my 2nd post and I sound like a 26 year old broken down disabled person, but in spite of all these things, I'm trying to turn my health around a bit!) If I could have gotten my breathing under better control, then I feel like I could have run much further, but the burning in my lungs and subsequent buildup of "crap" in my lungs kept stopping me! I had an upbeat song blasting on my ipod (Pink's "Who Knew"), and I just tried to keep going. My problem is that if I can hear my own breathing, then I end up having to stop running. It sounds nasty trying to breathe through so much junkiness!

Despite the difficulty breathing, I still feel like I made some progress. I asked my bf tonight if the breathing will get better the more I run, and he thinks that it will. I plan to go running again tomorrow, actually! I really want to get into the rhythm of it. I guess I feel like maybe today was the worst day - the first day - and the more I do it, the better it'll get. This has happened before with respect to exercise. Because of chronic fatigue/exhaustion connected to my health problems, it is very hard for me to exercise - I often feel like my energy level is somewhere stuck in the mud, but if I could get into some sort of daily pattern, then I feel like maybe it'll get easier! Even if I don't run every day, at least I'll try to take a walk, which was what I did in college, too. I have a pilates mat in the basement, and I may drag that out, too, to start doing the 20 minute sessions again!

Who knows, I may be turning over a new leaf! I truly hope I still have the motivation to run again tomorrow!