A day in the life of me

I thought of doing a post like this when I was at the library with my Mother-in-law and Sister-in-law last week and I saw the book One Day in the Life of Ivan Denisovich. It's good book by the way--I recommend it if you've never read it. Those of you that went to school with me in Waunakee may remember it.

Anyway, the fact is that I haven't yet fully disclosed what it is actually like for me to deal with this pain on a daily basis. I've learned to hide so much of it and it probably doesn't help anyone to really understand what it is like. After a lot of contemplation, I've decided to share what happens during my typical day so that people can begin to understand what it is really like to live with Chronic pain. So here we go...

The Typical Morning

Most mornings, I am woken up by pain around 5:30am and am shaking and crying within a minute because the pain is so bad that I can't stand it. My husband gets out of bed to get me something to eat so that I don't get a sick from taking painkillers on an empty stomach (learned that one the hard way). At a minimum, it takes 20-25 minutes for a painkiller to kick in, but realistically, it is more like 45 minutes (by 6:15am). From there, I am so exhausted from the pain that I go back to sleep for another 1/2 hour, bringing me to 6:45. Next, I spend about 15-25 minutes motivating myself to get out of bed. When I finally do, I take my morning meds, which has ranged from 2-6 pills. I take a short bath every single morning because it helps with the pain and because I usually don't have the energy to stand through a shower. After that, I get ready as fast as I can, which includes sticking on a Lidocaine pain patch, and packing snacks and a lunch for the day. I generally check my work e-mail and schedule for the day on my business BlackBerry to make sure that I'm not already missing a meeting, since my co-workers are all on Eastern time. I also have several employees and it is very important to me to make sure that I am not leaving them hanging on something urgent. Then, I finally get out the door far later than I intended. Considering that I used to get to work by 7am, it's stressful for me to see that it is generally 7:45 or later by the time I actually leave my house.

The Typical Workday

As you all know by now, my last day of work is April 2, so this part of my day will change very soon. After reading this, you will all probably understand why leaving my job and not working until my pain is under control is so necessary for me. However this is the schedule for now: I get to work far later than intended, quickly read all of my e-mail, prioritize my day, and make sure that I eat a piece of fruit and have a cup of coffee to keep up my energy. Inevitably, something that has to be done by the end of the day (if not sooner) comes up and my day is thrown to chaos, which I'm used to. Unfortunately, in my current situation, I throw myself into it and before I know it--my painkillers have worn off and I'm in terrible pain. Luckily, I have a windowless office and everyone that I work with is in another state so they don't actually witness this. I generally take a painkiller and curl up in my big leather chair for about 20 minutes, or sometimes even curl up on the floor for a bit. At this point, there is no way that I will be able to accomplish anything of value within the next hour and I realize that any projects with upcoming due dates will either have to be late, of lesser quality...or worse in my book...will have to be piled onto a co-worker's plate. In addition, I have at least 2 physical therapy or doctor appointments each week, so the time crunch becomes even crunchier (for lack of a more descriptive word) So, I struggle to get through the rest of the day and go home much sooner than I would want to.

Evening

At this point I am totally exhausted and generally have homework to do. School has not been truly stressful for me for a long time (with the exception of a class that I recently had with one nutty professor), but it does take me more time than it used to because I have to make an extra point to proofread anything that I write. In addition, I read a little slower than I'm accustomed to so that I can make sure that I am comprehending what I am reading. I also have far less time to complete things because I don't feel well 3-4 nights of each week. Luckily for me, my husband loves to cook, so he handles dinner and dishes while I rest and slowly work on homework.

Night

Nights are almost as bad as mornings. I only get to take a set amount of painkillers each day and then I'm totally reliant on a muscle relaxer that was prescribed to knock me out so that I can sleep. This also takes time to kick in, so if I wait too long to take it, I have to deal with a lot of pain until the pill kicks in and does its job for me. I don't really get a choice of how late I want to stay up anymore. The stuff knocks me out for a full 6-7 hours once it works, so if I don't take it by 10 along with the other 4 pills that I take at night, my morning becomes even more difficult than usual.

So, that's my life. Not much room for laughter and fun, but I still make a point to cram it in. Granted, that part is pretty easy to do with my hilarious husband ,funny co-workers, and daily conversations about the antics of two of my nephews with my sister.

I also have a few quick updates from the last week or so:

• Hematology appointment Monday--this will be the "moment of truth" that I've been dreading.
• Nerve block on the nerve that is actually causing my pain on Thursday--more invasive than the other ones I was having, so I will be unconscious. If all goes well, the day in the life of me could drastically change for the better in just a few days!
• Only 8 more workdays until I am unemployed--I'm trying to figure out what to call myself then: Unemployed? Housewife? Professional Patient? Professional exerciser? Can I pull off the title of "Trophy wife"???

Thanks for reading my most confessional of all posts to date.

-S

It's been awhile...

Hi all,



I haven't posted in awhile and it was by design. There were a lot of ups and downs over the last couple of weeks and I wanted to have it all in perspective before I shared anything.



First is the update of my blood testing. Two days after the blood draw, the hematology department's social worker called me with this statement: "Your results are consistent with a blood disorder". Then they set me up with the first hour-long appointment that the doctor had available. In totality, I have a two hour appointment set up. The first hour is to talk to the nurse about the diagnosis and treatment plan and the second is to spend time with the doctor and ask questions. I'm a little concerned about this.

I didn't say much about this in my last post, but hemophilia is a concern because my great-grandmother had three boys who died in childhood of hemophilia. I also have a great aunt who had a son with hemophilia. He was only a few years older than me and had a very rough life because of it. Per the link I posted in my last post, if I am a carrier and my hubby and I have children, we have a 25% chance of having a son with hemophilia. Aside from that, I'm concerned that there is another bleeding disorder because of symptoms that I have. My maid of honor at my wedding has seen more than her share. She saw me bleed excessively from a small head wound when we were in a car accident together, and also saved my wedding dress with quick thinking when I got one of my infamous nose bleeds at my wedding reception. So, we'll see what happens when I go in on March 22.

Next, I had a nerve block on March 5. My plan after the last one was to refuse to have another one because the effects were not long lasting. Having two needles shoved through my back is not fun, and any procedure comes with risk. But, I was talked into it by the pain clinic doctor after hearing that a patient in a similar boat as mine had to have five before she received a year's worth of pain relief. So, I dove in for number four this past Friday. I quickly learned that the nerves that were blocked were not the ones that caused all of my pain. Long story short, I got back into see my pain doc the following Tuesday, and he gave me some different muscle relaxers, upped the dose of a med that I take that is supposed to help with nerve pain, and told me to call in week if I still have the pain. The plan is to do a small injection to help that nerve if needed.

After that, I had a few good days, though I still have to take pain killers and muscle relaxers. I'll take it for now. The great news is that I only had a couple of appointments last week and was able to really focus on work and homework, and I was also able to do a bunch of errands and things I was waiting to do. The downside is that I still wake up in a lot of pain and have moments of pain between doses of the painkillers, but I'll take it for now.

Here's to a great week!
-S