This Week Has Kicked My Butt

This week has absolutely kicked my butt. Running out of my Bachlofen was much worse than I had imagined it would be. Not only was I not sleeping much but I got a migraine that refused to respond to my rescue meds. That hasn't happened in years...well, since I started taking the Bachlofen. Hmmm, could they be related Mayo doc who says it is not a migraine medication? I do believe so.

I remember those days...it was horrible. I would take my rescue medication cocktail (imitrex, Ketoprofen, Ativan) and either get some bit of relief or  not, but then as the meds wore off the migraine would come right back. My insurance company would only allow 18 Imitrex in a month (this was before it went generic so I couldn't afford more) so there were always 12 or 13 days of untreated migraines. I always had a migraine - before one could resolve another one was triggered. The rescue meds only started working reliably when I started on the Bachlofen.

Anyway, with my appointment still more than 2 weeks away, a ton of family coming to town this weekend, a nasty migraine that won't respond to my meds I broke down and went to urgent care yesterday afternoon. I went armed with my migraine tracking log and the list of meds that I take. I told the doc all about running out and being between people who can prescribe it (blah blah blah). He was shocked at the information in my migraine log - I guess he hasn't seen many people like me. He said that they get quite a few people in who are looking for various medications but he thought that my situation was appropriate. He had no problem setting me up with enough Baclofen to last me until the 16th (my appt) and offered me a shot of toradal (sp?) to help me get past this migraine as I had already taken the maximum dose of Imitrex.

Twenty five minutes later, with tears in my eyes I was feeling a little better and on my way to the pharmacy for some more Baclofen. I slept so good last night. Even though I still feel pretty crappy and heavily medicated at least I'm on top of the pain again and have regained my confidence that I can handle whatever pains come my way.

I feel so panicked when things get as out of control as they had. The fear quickly overwhelms me and I end up an emotional wreck, sitting in front of some poor doctor, begging for some relief. I hate feeling this way even more than I hate being weepy in front of a doctor. I was nervous going in because I don't want to get labeled as a doctor hopper, or worse, a drug seeker. Fortunately, Bachlofen is a simple muscle relaxer with  no addictive qualities - it's not even a pain med. for crying out loud.

Anyway, the lesson I learned is that I absolutely must convince the Rheumy doc to continue to prescribe the Bachlofen. Wish me luck.

Rupert

This past Saturday my husband and I went to the local humane society and picked out a new pet rabbit. Our previous rabbit, Mr. Miranda, died of old age 3 years ago. He was a great joy to me, my husband and our dog Lucy. We've wanted to get another one for a long time now, but always said we would wait until we move back to the midwest and the move from Minnesota to North Carolina with our other rabbit was a huge trauma on poor Mr. Miranda. He didn't eat for about 6 weeks causing him to lose half his body weight. The vet said he looked healthy, was remaining active and hydrated; eventually he would start eating again. And he did but it was clear we would not be getting another rabbit until we settled on a city long-term.

Now that we're here and are settled in the apartment we decided it was time to find another rabbit to join our family. We went to the shelter intending to get a young rabbit that may be more easily trained and would last a little longer (rabbits don't live long). When we got there it was a 2 year old Rex that pulled on our heart strings. We had to wait until yesterday late afternoon to pick him up as they insisted on having him fixed before letting him go.

The wait was long but we're all very excited to have him home with us, especially Lucy. She knew what was coming when we set up the cage, food, hay, litter and stuff. The familiar smells and the excitment in her tail convinced me she knew we were getting another rabbit. She's done nothing but think about and pine after Rupert every since he arrived. Since he is still recovering from surgery he is supposed to remain in his cage through the end of today. The wait is more than poor Lucy can bear.

You can see, just how cute he is.

Yikes!

Yikes! We got our first electric bill in yesterday's mail. I was certainly expecting it to be kinda high as there was more washing of clothes and dishes involved in the move, plus StL has been under an excessive heat warning for most of the time I've been here. Still, I was kind of surprised at just how high it was.

Along with the bill we got information about the rates and such. Armed with this new information I'm now adjusting our behaviors to bring that number down for the next bill. I've gone through and replaced all the bulbs in the overhead lights, which needed to happen anyway. The electric company charges more during peak usage hours (10am to 10pm) so I'll restrict my laundry and dishwasher use as much as possible to off peak hours. I'm also going to start shutting down the computer and all the other devices (router and such)whenever we are away or when not in use for any length of time.

I imagine the gas bill isn't far behind. Our stove/oven and hot water heater both run on gas...I've never had any gas appliances so I don't know what to expect there. Hopefully it won't be the shock our electric bill was.

Do you have any energy saving tips? What kind of things do you do to save money this time of year?

Running Out

Well, I'm almost out of my Baclofen (muscle relaxer) and I won't see the new Rheum doc until the 16th of August. I'm actually pretty nervous about running out as this is the only medication that has made any kind of positive difference in the frequency of my migraines. Plus it helps me to regularly get good sleep.

I can't remember if I mentioned this earlier or not, but the migraine guy at Mayo that I see didn't want to give me a new prescription for this med because it was not something he has ever prescribed for migraines so he doesn't feel qualified to write the script (whatever). He wasn't budging even after I explained how it helps my migraines. This is what prompted him to send me to physical medicine but then they told me I have Fibromyalgia and this distracted me enough that I totally forgot to even ask about the Baclofen. I've tried calling again to that doc but was told that I should find someone locally for all of this.

Of course, getting a new appointment with someone always takes a long time so run out I will - very shortly. Even on the Baclofen I continued to get muscle spasms semi regularly so I anticipate being pretty incapacitated when the next one occurs. I've been considering utilizing my Ativan to help fill this gap until the 16th. The thinking here being that by putting myself in such a relaxed state perhaps I can prevent the horrible neck spasms and maybe it would even to help me sleep at night.

Part of me feels a bit guilty about using this med outside of the parameters of the prescription, but I know myself and I remember well how things were before the Baclofen. I'm desperate and frankly these parameters don't make much sense. Of course, when I do run out I could very well spend a fair amount of time in an anxious state, putting me right inside the parameters set forth by my doc. I'm a bit annoyed at even being put in this position. I have enough to deal with here without having to run out of the one medication that was able to take me from literally daily migraines to my current average of 18/month. No doubt they are still wildly out of control, but I'm so thankful for the many migraine free days each month it has provided me with not to mention the invaluable sleep it helps me with.

Friday Plan

Today is better. I feel like my husband and I are back on the same page.

The oppressive heat wave that continues to linger over St Louis (along with much of the country) continues to keep me indoors. I've cut back to just one trip to the hospital each day, which is a little easier on me. I've been going down around lunch time and staying for a couple of hours and keeping her company while she eats. I know she has my uncle during breakfast and some combination of cousins and my aunt and uncle in the evening. As much as I would like to spend more time down there, at least I know that she is not alone when I'm not there. She seems to have stabilized and will likely be discharged on Monday.

Hopefully things will return to normal after that. In the meantime I'm going to just try to be kind to myself. To ensure that happens maybe it would be best to make a plan for kindness. I'm going to come up with 3 kind things I'll do for myself this weekend. Let's see...
1. Eat lots of cookies and cream ice cream
2. Do no laundry
3. Have a date with my husband - out of the house

What are you plans for the weekend?

Bad Migrainista

I'm spending way to much time beating myself up these days. With my grandma in the hospital my time and energy supply are way down. I'm not even able to keep up with all the everyday business of the household like dusting, dishes and laundry. I'm doing things as are necessary but never really on top of it.

Hanging heavily above my head is finishing up the moving business. Our vehicles need safety inspections, emissions inspections, new registrations, license plates and I need a new driver's license. All of this takes time and money. Both of which are in short supply. Moving to another state is a real hassle and I will do everything I can to NEVER do it again!!! This is my 4th state in 6 years and at this point I feel like we have thrown away a bunch of money just getting new plates and stuff for our vehicles.

Anyway, all of this stuff was supposed to be done this week, which simply won't happen. I'm harboring so much guilt about not being on top of things right now. My husband seems to have gotten temporary amnesia about the physical barriers I face everyday. When he started his new job he basically forgot about everything else that needed to be done - assuming I would just do everything - forgetting that I can't. I told him I need help and he told me that he works all day, I should just handle it since I have "all day" to get this stuff done. He might as well be calling me lazy.

I'm not quite sure how he could have forgotten about my health but it is really making me mad. I don't like having to explain to my husband what my days are like, as if I were explaining it to someone who didn't really know me. This tension is feeding my natural tendency to feel guilty about what I can't do and to beat myself up much more than usual. This nasty side of myself keeps telling me that there is no good reason I can't get everything done with time to spare. But it's not done. Bad Migrainista!

My Body is Pushing Back

My grandma continues to make progress every day and she was even moved out of the ICU last night. It's great to see bits and pieces of her personality come back as she stabilizes. I'm still spending a big chunk of my days with her. With my aunt and uncle needing to return to work I've been spending the bulk of those hours at the hospital.

This change in my usual daily routine has created some very long days as there continues to be so much to do around the house. I'm not yet done with all of the moving business but I did manage to secure some new insurance for us this week.

I'm exhausted and after pushing my body for 5 days straight my body has decided to start pushing back. This morning the exhaustion continues and now I also have a migraine, leg pain, back and neck pain. Between that and today's heat index forecast to be 117 degrees I just want to crawl in bed and stay put until fall. But I ought to go down to the hospital and spend however much time I can with my grandma.

I figure I'll rest this morning and pull myself together this afternoon and spend a couple hours with her. All I can do is what I can do - I don't think the rest of my family will fault me for needing to take care of my own health today but my limitations are very bothersome during such times. I wish I could do more, I wish I were better.

Exhausted But Still Going

I'm exhausted! I've been spending most of my time since early Friday morning at the hospital with my family. Fortunately the hospital is pretty close so I'm able to travel back and forth pretty easily.

Things have been progressing with my grandma throughout the weekend. The doctor took her off the ventilator just a couple hours ago, which was a huge relief to everyone. Before they would remove all the tubes and such they wanted her to be awake and able to move about some, but she was clearly very uncomfortable as soon as she became aware of all the tubes and such.

So far so good. Hopefully she will be moved out of the ICU tomorrow morning. Things are pretty quiet at the hospital. Her room is very dimly lit and for the most part we've just been sitting around visiting with each other. Yet somehow I've managed to get exhausted anyway. Maybe it's just the stress and all the talking. I didn't sleep well on Friday night and then spent about 7 1/2 hours at the hospital. Slept like a baby Saturday night but woke up just as tired. I think I could have slept all day today.

This fatigue is super inconvenient right now as everyone needs to return to work tomorrow morning so I will be her main support all day. On top of that I must set up new car insurance for my husband and I. Our old policy doesn't cover this area and our 30 day grace period is about up. I get the feeling this will be one heck of a long week.

Did I mention I'm exhausted?

An Unexpected Day

Shortly after waking up this morning I got a call - my grandma is in the ER and going to be admitted. I got dressed, washed my face and headed over to the hospital. Thankfully the migraine that's been with me since Tuesday evening finally resolved overnight so I was in good shape for the bright lights and stress of an ER.

The emergency passed but she is now on a ventilator in the ICU for a couple days at which time the docs hope she can take over breathing on her own again. There is no way to know for sure what the outcome here is. We simply will have to wait these long couple days and see what happens. She has been very clear about her wishes regarding ventilators so if she can't manage on her own...well let's just hope for everyone's sake that she can.

She suffered from migraines almost all her life. Most of it when back in the day when doctors were still blaming patients for their "pain". There were no rescue medications to take and there certainly weren't any preventatives to try. Fortunately, she didn't have them as frequently as I (and many of you) have them. We talked a lot about our migraines over the years. I was always comforted by some similarities we shared. She always kept her place fairly dark. Any light that she turned on was low wattage and well covered. People would come over and want to open the shades and turn on lights so they could "see". But she, my sister (who sometimes has migraines too) and I have always been more comfortable in the low light.

Today in the ER she was sedated because she was on the ventilator but I could tell that she wasn't comfortable. The stretcher was hard, it was too cold for her with just two of those thin hospital blankets, and there were so many bright florescent lights shining directly down on her closed eyes. Eye lids are no match for that kind of lighting. I wasn't at all surprised to see her calm and comfortably sleeping once she was in the ICU in a bed, with real blankets and only one dim light on far enough behind her head that her eyes were clear.

What Do You Think?

Not sure but I think I'm cheating on my meds today. What do you think?

Here's the thing. My headache doc has instructed me to not take more than 9 of my rescue triptans per month. He says that the preventative meds can't work if I'm overusing the rescue. Not that the preventatives have managed to prevent anything, but that's beside the point. I've committed to his plan and have been following it to the letter.

Yesterday I knew fairly early on in the day that a migraine was inevitable but, as always, I needed to determine if I was going to treat this one or call my body's bluff and try to make it through the day with just Tylenol (which might as well be a M&M for all the good it does). I decided to call my bluff and not treat it. Unfortunately, I made the wrong decision as yesterday's migraine turned out to be super bad. It was somewhere around 4pm when I finally broke down and took my triptan but of course by then I was all kinds of nauseous and in more pain than even the triptan could get on top of.

After about 3 hours the worst of the pain has gone down. As expected the triptan wasn't enough but at least the pain was tolerable and bedtime was only a few hours away so I decided to see what a good night's sleep could do for the migraine. Waking up with the same pain that I went to bed with was pretty disappointing. With the whole day ahead of me I was fearful that today would take the same path as yesterday so I decided to go ahead and take another triptan.

Here's where things get tricky. You see I'm allowed to take up to 2 triptans within a 24 hour period and if I do that, those two triptans only count as one because I'm treating 1 migraine day. Since I took yesterday's triptan around 4pm and I woke up about 6am I figured I can count today's triptan as part of yesterday's as they were taken so close together and I really was treating the same migraine that I never got on top of yesterday.

I've never taken this approach before. Usually I just count each day as 24 hours no matter what and rarely do I take more than one triptan in a day. I've already taken 5 triptans this month and I don't want to take a 6th (though technically I did) as that would only leave me with 3 for the rest of the month and I will likely need more than that when my period comes.

What do you think? Is this fuzzy math on my part? Am I trying to justify breaking the rules or is this a reasonable argument?

Wednesday

Last night's dinner was great. I really enjoying spending time with my aunt, uncle and cousins who live here. Thankfully my husband also enjoying being with them.

It wasn't long after returning home last night that a quick moving migraine took hold and knocked me out for the rest of the night. I didn't sleep well and woke up tired, cranky and with another migraine (slow moving this time) trying to knock me out again.

I got my husband off to work, managed to shower and even run out for a short visit with my grandma. It's only 10:30am and I'm in pretty rough shape. I don't know how much, if any, of my to-do list is going to get done today.

On a positive note, today's temp is more reasonable than the past few days.
How are you doing today?

Heat or Anxiety

Wow, so this is my 301st post. Cool.

I rolled out of bed this morning about 6:30am, got dressed and headed right to the grocery store. The temp was already 89 and the humidity, very high. We're in a really hot spell right now and I'm struggling a lot because of it. At least I think it's heat.

I suppose it could just as well be anxiety. Either way, I feel like all my insides are twisty and icky. There is still some moving business that will need to be addressed but I wouldn't think that is anything to be anxious about. But then again, the very nature of an anxiety disorder is that I can get anxious for no reason at all. Annoying...

Thankfully, I have some Ativan to take tonight before I go out for dinner with my family. Do you ladies struggle with physical anxiety responses that seem to come from nowhere? How do you manage your symptoms?

Welcome Back Instant Streaming

It took some doing but I finally managed to solve the Roku issue and it meant switching to a Sony Media Player. Back when we first got our Roku it was the only option for bringing Netflix to the TV and since then they have started requiring you leave them your credit card number in order to start streaming anything. If you want you can purchase MLB games or other movies and such, on demand but we pay for our Netflix and we can watch all that we want for that low monthly fee. We are never going to purchase movies or games through the Roku even though it is now available. And I sure as hell am not about to give Roku my credit card number just in case I decide to down the road.

Seriously! COME ON! I don't just go around giving my credit card info to people for no reason at all. I don't know why they feel it is appropriate to require that but there is no way that will happen.

Fortunately there are now several ways to get your Netflix streaming so I don't have to get a new Roku. The Sony player isn't quite as user friendly but it sure gets the job done. Just in time too as I'm feeling pretty rotten today and plan to spend most of it watching movies and such.

Headache Blog Carnival

The July Headache Blog Carnival is now up! This month's topic is coping with the summer months.

The End of Our Roku

After about 2 years of almost daily use our Roku streaming device has stopped working. The countless hours of Netflix it has allowed us to watch on our TV was more than worth the price we paid for it. I knew the end was near as it has been acting up more and more over the past couple of months.

My husband says that these sorts of electric devices tend to heat up and expand when in use and then it will cool and contract when it is not. He says that this constant expansion and contraction eventually will wear out the internal components. And our Roku certainly got a ton of use so I can see how this theory may apply.

Still I'm a little bummed that it doesn't work anymore. I miss it, and it hasn't even been 24 hours. Part of me wants to just drive down to Best Buy and get a new one but I'm not feeling good today. Of course, that is as much a reason to just stay put as it is a reason to replace it now. It sure would be nice to rest in front of the TV and escape into a good movie from Netflix...

Best Buy is awfully close. Then again it is really hot and sunny today. But not as sunny and hot as it will be tomorrow and all weekend for that matter. Plus with the weekend coming, I'll want it even more because there won't be anything good on TV.

Can't We Just Skip Summer?

This month's Headache Blog Carnival topic is Summertime Survival Skills. As I sat down to put some thought into the topic this morning I ended up chuckling a bit to myself because I really only have one survival skill for the long hot, humid summers that have been a reality for the almost 5 years since I left Minnesota: avoidance.

Of course, I make sure to drink plenty of water, get enough rest, wear a hat, stay out of the sun as much as possible and the like, but those survival skills apply all year round. This time of year is just so darn miserable. Going outside is like being in a sauna. It was like that in North Carolina, in Northern Virginia and here in St. Louis too. Nothing like the Minnesota summers where the really icky days are much less frequent. Don't get me wrong, the trade off is worth it as the fall, winter and spring months are significantly better outside of Minnesota.

The only way I can figure to really cope with this crazy steam bath season called summer is to avoid it as much as possible. I try to run my errands in the morning before the worst of the heat sets in. I won't turn down a social invitation because it requires going outside some but I won't seek out plans that are outside either. I won't suggest we go mini-golfing or hiking until we've safely made it into fall weather.

The real trouble is that when the air feels this thick I can feel my head almost swell, followed by a pulsing sensation, by then, a migraine isn't far behind. Plus this weather tends to exhaust my limited energy reserves and makes me a bit crabby. I suddenly find myself wanting to just sprawl out on the sofa with ice cream, fruit and Netflix.

Yes, the only thing that makes sense here is to avoid the outdoors as much as possible. It may not be the best way to cope but it is all I can figure to do. How about you?

Back to Business

I'm happy to report that I managed to survive the long holiday weekend of activity. I was out socializing, eating and even taking in some home firecrackers with my extended family. My body struggled to keep up but I took care to just lay and rest between activities. I could have used more time for resting, but I really wanted to make the most of my mom's visit and of the opportunity to eat without cooking so I pushed it more than I normally would have.

With the long fun weekend behind me, there is still much moving business to take care of this week so it is back to work today. It seems many of the address changes we made didn't take so most of our mail still isn't coming to us. I need to secure new car/renters insurance and find a new bank. Plus there are still a few piles of stuff that I need to find a home for and some pictures that need to be hung. I figure I should be able to get all of this done before next weekend. Then I will officially feel moved and at home. Can't wait!

Okay, I need to peel myself out of this comfy chair and get back to it.

What did you do for 4th?

Big Weekend Ahead

I'm becoming very annoyed at blogger. I haven't been able to comment on some of your blogs for several weeks now. Some blogs I can comment on without problem but others, for whatever reason, just send me on this cycle of entering passwords over and over. I haven't even been able to comment on my own blog, which is the most ridiculous. AH!!!

Come on blogger, get it together.

Anyway, I wanted to comment on my last blog. It seems clear the Reumatologist is the way to go and Jenn even had a name of someone in my area. Thanks Jenn! I'm going to look her up and give the office a call yet today! I am now also in South County :)

On a completely different note my mom is arriving tonight for a weekend visit. She won't be staying with us as we don't have a 2nd bed but I'm looking forward to visiting with her. When my husband gets off work tonight we're heading over to my uncle's house to meet up with mom and have munchies and such. Saturday night we'll have a big family BBQ and Sunday it will just be the 3 of us for dinner. Then Monday she leaves for MN and hubby and I will head over to the in-laws for a holiday BBQ. It is almost as if we had a life. Oh wait, I think we might actually have one now :)

I only wish I was feeling better so I could enjoy it more. The last 24 hours have been really tough pain wise, head and body. The nausea has been quickly growing since I woke up this morning. Thankfully the bulk of my time this weekend will be with my family and they already know about my health issues and are very kind and understanding. I feel more anxious about time with my in-laws as we have never lived close enough for us to get to know one another.

You know how it is when you have to explain to someone what's going on. You never know how they will respond, if they will understand, if they will judge, if they will say something hurtful or gossip behind your back. I have no reason at all to think that my husband's extended family will be anything but kind and understanding about my limitations and such but the anxiety is there anyway. They are his family and we'll be spending a fair amount of time with them in the years to come so it is important to me that things go well.

Do you ever feel anxious about letting people into your dark world of pain and limitations for the first time?