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

I'm coming out...I want the world to know...

...that, as of April 2, I am unemployed. By choice. Yes, in this economy. No, it wasn't on a whim.



Back on one particularly stressful day, I came home in complete misery from a day of work, school, appointments and pain and realized that somethin's gotta give. At the time, I was only three classes away from graduation (stress-free electives), going to up to 5 appointments a week, and of course, I am in the boat of not being able to control the pain. In the end, it made the most sense to give up my job. It's only money.



This was not a lighthearted decision--I am after all a workaholic and have been with the same company for 12 years. So, about a month ago, I told my boss the words that I don't think either of us were ever expecting to hear..."You will be receiving my resignation shortly." It was a difficult conversation because I have a great deal of respect for him, along with everyone that I work with. Since then, I've been watching/hearing jaws drop all over the place as I slowly tell people that I'm leaving.



So, as we go along, I realize that I am losing out on luxuries that I can easily give up, like expensive handbags and jeans, but that I'm probably also going to lose out on the smaller things like my fancy handmade soaps, organic make-up and my favorite brand of toilet paper. Don't judge, I know you have one too. But, it's all worth it.



The decision made me feel really selfish for about a month. But, then I realized that this might be the most un-selfish thing I am doing for many reasons. However, the main reason is simply that my husband has been taking care of me for so long--running to the pharmacy for prescriptions, spending many nights in, getting out of bed at 2 in the morning to find my painkillers, taking care of medical bill disputes, cleaning, laundry and on and on and on. I see the stress it causes him, even though he's awesome enough to hide it from me. By getting better, I can give him back both his wife and the life we once knew together...which also involved much less income. :)

I can't wait!
-S

Complete Randomness!!!

Before I turn negative, I want to share this:

God didn't promise days without pain laughter without sorrow, sun without rain. But he did promise strength for the day, comfort for the tears and a light for the way.

I saw this saying on a sign in some catalog somewhere and it struck me. Since it was during a time that I was feeling well, I saved the text so I could pull it out at a time like this. Now I'm planning to find and buy the sign to hang in my bedroom so that it is the first thing that I see in the morning.

On another note--Since I recently spent two months doped up and stuck mostly in my bedroom on a medical leave, I redecorated my entire bedroom and living room in my mind. After I returned to work and had my full income again, I started shopping around for all of the components of our bedroom, beginning with a pair of black-and-white curtains with a fancy pattern that I thought my husband would never agree to, but he did...let's face it, I've spent way more time in this room than he has as of late, so I feel like I have the right to claim eminent domain on the decor. :)

OK, onto the negative. Since my Dr. is now on the blood train, I sent my mom an email asking for information about all of the hemophilia and other blood-related diseases in my family. Sadly, many men, or should I say boys, have died of hemophilia since the 1920s, and many women suffered from other bleeding issues as well. If you've ever witnessed one of my EPIC nosebleeds, you can understand why I am now becoming frightened for my own future at this point. My first concern has to be myself, but my second is now to have a genetic work-up to find out if I am a carrier of any of these diseases. By all accounts that I have been able to gather, I will be the first to go through testing like this, so the women in my immediate family (a total of 5), are going to be very interested to see what happens.

Next, is that for the first time since I've returned to work in November, I had to admit to my boss that I just don't think I can keep up with my main projects. More on that at another time, but let me just say the words were not easy to say.

Finally, I just can't seem to figure out a way to comfortably get through the day. One would think a pain clinic would be aiming to make me comfortable in both the long and short term, but this one only seems to be concerned about the long term. Friday seems miles away...

...and speaking of...I am a week into my pill case experiment. This morning, I woke up groggy and in pain, had the case upside-down and took my PM pills. Luckily for me, I removed the pill that knocks me out cold at night (See my post titled "Ash Wednesday High" for more on that pill) so it wasn't a huge deal, but I have some doses that are higher at night than in the morning.

For my finale...out with a bang. Tomorrow, I submit my application for graduation for my bachelor degree in Business Administration! It's been a long, long, loooooooooong road to get there, but I'll be proudly walking across the stage to snatch my diploma on May 16th. You'd better bet that there is going to be a party at my place, and you're all invited.
-S

Maybe there's something in your blood?

Today was horrible and great all rolled up into one. I woke up in crippling pain and I really don't feel any better right now. However, this morning my husband drove me to an appointment with my new ob/gyn and we have some new, potentially promising avenues to pursue. Otherwise, trying to work was torturous...I was in so much pain that talking on the phone wasn't really possible through much of today.

This Dr. happens to be absolutely amazing in the fact that to the best of our assessment, we figure that finding the root cause of a medical issue is his absolute passion...which happens to be a big part of what I do for a living (though no one dies if I fail...). On this visit, he ruled out endometriosis as the ongoing cause of my pain, based on my current endo treatment plan. He then suggested that I see a hematologist, due to the history of some blood-related issues in my family, and my own propensity to bruise easily, along with the knowledge of some HORRIFIC nosebleeds that I've had in the past. He also wants me to see a gastroenterologist to rule out possible lower-digestive track issues, though it's a very unlikely cause. Lucky me, I already have one for upper-digestive track issues, so I'm all set.

Getting closer! Next stop--pain clinic on Friday.
-S

So what the heck is wrong with you, anyway?

I've heard those words many times. In short, here's the list:

Migraines
Endometriosis
Kidney Stones
Barrett's Esophagus
Chronic pelvic pain syndrome (cause undiagnosed, but suspected to be endometriosis related)


The links are to sites that give a fairly straightforward explanation of if you wish for more information. They are also sites that do not automatically throw graphic pictures in your face on the explanation page as some other sites do.

These are the surgeries/procedures that I've had since August of 2006 to either diagnose or treat these conditions:

2 Laparoscopy procedures for endometriosis
1 Oomphectomy (removal of left ovary and tube)
3 Lithotripsy procedures for that stubborn kidney stone
1 cystoscopy that actually undiagnosed a previous diagnosis
1 sphenopalatine nerve block that ended lingering pain from chronic migraines
3 hyperplaxis nerve blocks to attempt (unsuccessfully) to give me relief from the chronic pain.

1 endoscopy that diagnosed my Barrett's

I actually had no idea what the total count was until I typed this....wow...12 procedures in just 3 1/2 years. Anyway,the endometriosis and chronic pain are what have been keeping me from my life since last August.

So, that's what's wrong with me in a nutshell. Here's hoping we put the missing pieces together quickly and painlessly, and that I am not one of the many that never finds the cause of her pain.

-S

Ash Wednesday High

Yup, that's right. My idea to get a morning/noon/evening/night pill case failed on day one...and actually, now that I say that, day two..brb..have to take my noon pills. Alrighty then, back to yesterday.

I came home from work, took my "evening" pills around 6pm, and went to Ash Wednesday church service. As we got there and took our seat near the front, I became groggy and remembered that my 6pm dose of pills included a muscle relaxer, which knocks me out for about an hour or two. Oh my. I quickly and quietly told my husband what was going on, then looked up at the altar and noticed that there was communion during the service. OH NO! So, as the service progressed, I could barely stand without bracing myself against the front of the next pew, with my legs at an angle resting on the back of the pew. When it was time for the sermon, I kept nodding off, in clear view of the pastor. My husband kept politely nudging me as my head bobbed, only for me to wake up and have my eyes roll right back into my head. During the offering, I had no choice but to fold my hands, put my head down, and take a minute-long snooze in a prayer position. I somehow made it to the altar for communion and then made the even longer walk to the car. By the time I got home, my husband had to drag me upstairs and to the best of my memory, it was a short night. I can't wait to explain that one to the pastor!

As for today, the pain level is pretty bad, but it's not stopping me from a quick evening with dear friends from yesteryear. Laughter is after all, the best medicine and there is no better place to find laughter than around a table with old friends.

More on what's actually wrong with me next time...people keep asking and I never have the time to fully explain.

Later,
-S