I realized yesterday that I really haven’t included you guys in any of the things I have done to help with my daily pain. I talk a lot about the ways the pain has changed my life, but I don’t talk much about the actual changes outside of relationship stuff.
Sooooo I figured I would tell you guys about some of the things I have done to help alleviate my pain.
The more difficult adjustments I have made are the things I really just can’t do anymore. I used to dance for a promotional group called Sound In Motion here in my city. I also did a lot of stuff independently for a few different night clubs as well as RedBull, RockStar Energy Drink and I also performed at the 2008 Republican National Convention. I loved dancing. There was never a time I felt more like myself, and felt completely free then when I was dancing. The energy of the crowd and the music was intoxicating, so easy to just get lost in the moment and let everything else go. Unfortunately, by the time I was scheduling my hysterectomy dancing a show was a 2 day ordeal. First, I needed to be sure I was in a “good” part of my cycle, then I would need to be sure to stay off my feet as much as I could the day of the show so that I could dance without hurting too much that night. The next day I was completely out of commission so I needed to be sure I didn’t have any plans so I could recover the next day. Eventually it didn’t matter what I did, I couldn’t manage my pain and dance, so in December I resigned. I still miss it.
Right in line with my love of dancing, I love a good workout. The loud music in my ears, heart pumping, body sweating, endorphin’s going giving me that perfect workout high after an hour on the elliptical. It was awesome, and a great way to relieve stress and get better sleep. Since standing, jumping and physical exertion cause my pain to skyrocket, I no longer go to the gym. I do still practice yoga, and stretch regularly, but it’s nothing like a good run on the elliptical. Occasionally I have tried swimming laps but it is really not my thing.
Since the valves in my pelvic veins are faulty enough to be unable to handle stress (but not faulty enough to treat) stress on my lower abdomen causes my pain to get worse. Laughing hard or coughing, lifting heavier grocery bags, kids, or laundry baskets, vacuuming or pushing a cart at the grocery store and shoveling are all examples of things I try to avoid.
I find that anyway I can absorb some of the pressure on my hips/pelvis helps with the pain. I sit on cushions at the kitchen table, and at work. Our bed is much softer than our couch so I prefer to lay there at night versus the couch. My husband purchased foam mats for the kitchen and bathroom so I can stand longer to cook (which I LOVE to do) and when I am in the bathroom after a shower. Since I have really long hair and I love makeup I set up shop on the floor in my bedroom in front of our full length mirror to do my hair and makeup. In an attempt to break up the amount of time I sit/stand to get ready I shower at night and do my hair/makeup in the morning before work (I sit on a cushion when I do this too). The warm water from the shower is also very relaxing/soothing for my pain so it’s a good way to get ready for bed.
Since the PCS makes me feel bloated and “full” most of the time, I try to avoid wearing tight pants around my waist. Alone it doesn’t make my pain worse, but if I am already uncomfortable it adds to my discomfort. I also choose a looser fit in the abdomen since as the pain gets worse, my belly swells. My summer wardrobe isn’t really effected by this since I can wear maxi dresses and cotton skirts/shorts. Winter, however is a little tougher. I have a few pairs of dress pants that have waist bands like sweatpants from New York and Co. that I love, and jeggings have become my new best friend. I also try to wear flats or shoes with a good amount of cushion in them to help with the pressure on my hips. I have some killer Steve Madden boots I am absolutely in love with, but they have heels so I can’t wear them as often as I’d like.
I also try to keep a fair amount of laying, standing and sitting in my day since too much of anything makes the blood pool in my veins and it starts to hurt. If I sit too long I can feel the pressure down low in the front, so I stand up and walk around the office every half hour or so. This also helps with the pain in my lower back and hips. If I stand too much-same thing. When it’s time for bed, I have to switch my positions every couple of hours since laying on my side will cause the blood to pool more on that side (which is crazily uncomfortable). I have adapted to the sleeping habits of pregnant women with pillows between my knees and sometimes under my stomach so I can sleep tipped forward. Occasionally a 5-10 minutes session of yoga inversions will help, but as soon as I stand up the pain returns. Also, its tough to stop in the middle of my work day and do yoga
I think the biggest adjustment in my life is how much less active I am. I really only work during the week since adding errands after work adds to my discomfort. I plan my weekends with time to take care of the normal things like groceries and house keeping but that leaves little time to see my friends since I can’t pack my days like I could before. Also, my commute to work is 45-50 minutes 1 way and, since driving is also an aggravator for my pain, I try to avoid driving more than 20 minutes one way on the weekends. I love movies, but the seats in a theater are torture, so I usually wait for the movies to come out OnDemand and watch them from my couch at home.
Instead of shopping around at the mall for the day, I try to pick out the stores I want to visit online first and then head to the mall with a few specific stops in mind. This way I can spend more time trying on the things I like, and less time walking around browsing. I love to shop, but this is an acceptable adjustment since I can still do it in small bits. Again, with an activity like this, I would not make any other plans for the day since it is such an aggravating activity.
I used to take a few hours once a week to clean the house. Ipod in the stereo, windows open, super cleaning my house. It was great and made me feel super productive when I was done. These days, The Kiddos and The Hubs do the heavy duty cleaning and I stick to dusting, wiping counters , mirrors, etc. I usually get about an hours worth done and then I need to be done since I most likely still have a meal to cook and other things to do that day. All of my activities are separated by time on the couch to try and counteract the time on my feet.
When it comes to the kids though, I will do whatever I can to make sure that we still do all the things they should get to do. I do still take the kids to the zoo or the science museum, we just have to sit down more, and I have to plan on being on the couch or in bed once we get home. If there is a movie the kids want to see, I throw on my sweats and bring an ice pack along to the theater. We sit in the row in front of the handicap bars so I can put my feet up on the bars and adjust my position as much as I can to keep the pressure off my hips. This is the one area where I make the least amount of adjustments because my kids deserve to do the things families do.
I think that’s it as far as the adjustments I’ve made to my life. At least, it’s all I can think of right now. Therapy wise, here are a few things I have tried:
TENS Unit – this did nothing but make my pain really, really angry.
Ice packs and heating pads are my best friends.
Physical Therapy- I had a few sessions, but I don’t have much in the way of muscular tension, and since medical treatment is expensive I am just doing my stretches at home. Come spring I plan on going back to see where I am at, and learn some new exercises. My PT is a huge fan of yoga too 🙂
Meditation/Guided Imagery/stress reduction: the best thing I have learned is the “Dialing Back Your Pain” piece I posted on here. 75% of the time it results in me falling asleep even when my pain is rough. The other 25% of the time I am in a spike and nothing is going to help.
As far as medications are concerned, I have tried several different kinds of hormonal birth control to suppress my cycle in an attempt to alleviate some of the pain. This tends to have the opposite effect on me. The longer I am on the pill, the worse my pain gets.
I took Celebrex for 3 weeks to try to help with inflammation but the result was a stellar appetite and a lot of gas. I also tried a Naproxen regimen but I respond much better to ibuprofen, which I still take daily.
I have tried several versions of Tramadol, including the Extended Release and HCL. Currently I find the most relief on 100mg Tramadol HCL when I wake up and another 100 mg half way through my day.
I have tried Detrol LA and Vesicare for bladder spasms to see if that would relieve some of the pain during a spike. I have tried them both ‘as needed’ and daily but I had no real change with each except ridiculous constipation. Note, constipation makes my pain unbearable.
AZO- this stuff works great in a pain spike to alleviate the aching/burning sensation. In conjunction with an ice pack on the front and a heating pad under my hips I might just get some sleep!
A have tried Tylenol # 3 a few times with a small success rate. It helped with the daily pain, but anything more than that was not even touched by these guys.
I have been taking Percocet 5/325 since after my laparoscopy in 2010, to date it is still the most effective against my pain, but it is also the most problematic since it is a narcotic so, I try to only take it when the pain is bad. Truthfully though, my pain is bad every single day.
This week I am trying Lidoderm patches and Elavil (10 mg) for pain relief. I tend to like to try things separate of each other so I know which one is working. I am not sure which one to start with yet. Lidoderm is a lidocain patch meant for localized pain (usually nerve) and the Elavil is an antidepressant/anxiety medication that has been shown to alleviate chronic back pain. I am going to try them both for a month and see what I win.
So, that’s what I’ve got for now. I am wiped, so I am headed to my soft comfy bed!