My meds have meds

meds

Let me start by saying this – I take more prescription medicine than my 84-year-old mom.  While I’m thrilled that I have such a healthy and vibrant mama – especially since she’s living with me now – it can be a little discouraging taking my multitude of pills day after day.  And, what’s even more special, is that some of the pills I take are to counteract the side effects of my other pills.  My meds need their own meds.  For example, I recently started taking Methotrexate for my Lupus. When my Rheumatologist prescribed it to me, he also prescribed me folic acid. Why? According to the website arthritis.about.com, “Methotrexate (MTX) is a chemotherapy drug that prevents cell reproduction by interfering with folic acid activation. Although very effective, its use potentially may produce serious side effects including nausea, mouth ulcers, blood problems, liver cirrhosis, and hair loss. Prolonged treatment with MTX may also lead to folic acid deficiency. To reduce the risk of these side effects, without fear of interfering with its efficacy, a maximum daily dose of 5mg of folic acid is recommended for those patients taking MTX on a regular weekly basis.” Sounds like fun, doesn’t it?  Another one of my meds, Arimidex, also has some fun side effects, such as bone pain and weakening, fatigue, and hot flashes.  My Oncologist prescribed me Arimidex after I completed chemotherapy for breast cancer. This medication blocks estrogen, which, among other side effects, can lead to bone loss, which can lead to Osteopenia or Osteoporosis.  I currently have Osteopenia, the precursor to full-blown Osteoporosis.  So, to make sure I don’t fall and break a hip at the ripe old age of 48, I’m taking twice a year infusions of a drug called Zometa (which, you guessed it, has side effects).  I also have terrible night sweats and hot flashes, so I take Celexa to counteract the lovely side effects of Arimidex.  I’m not complaining, just explaining (ok, there might be a little complaining going on, too).  Needless to say, my medicine cabinet is a happening place.

dancing meds

So, I’ve come to terms with the fact that I will have to be on one form of medication or another for the rest of my life.  Am I happy about it?  No.  Do I sometimes skip a dose when I’m feeling fed up or rebellious?  Yes (please don’t tell my docs).  But, that’s life – my life.  And, since I want to have as healthy and awesome a life as I possibly can, I’ll keep my medicine cabinet stocked – and make sure my meds take all their meds.

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Smooth(ie) Sailing

smoothie

My immune system hates me – and sometimes the feeling is mutual.  But, I’m trying very hard to repair my relationship with my body and be sensitive to its needs.  I have Lupus, which is a chronic inflammatory disease that occurs when your body’s immune system attacks your own tissues and organs.  Yes, I am at war with myself.  I have been fighting this war for a very long time and will be for the rest of my life.  After trying various medication regimens, I think my doctor and I have finally come up with a good combination to slow the disease process and battle the chronic pain and fatigue (not to mention the attractive butterfly rash on my cheeks).  But, I don’t want to depend entirely on medication, especially since side effects can include a suppressed immune system – which leaves me more susceptible to infections (in Lupus, your immune system actually is working overtime and must be slowed down).  So, I’m trying to focus on things that I can do to help myself.  I stay super protected when I’m outdoors – no easy task, since I live in South Florida – because for some crazy reason, sunlight can trigger a flare up.  I try to rest as much as I can – no easy task, with two small kids – because I get tired very easily.  I see my rheumatologist every 4-6 weeks to check on my lab work and adjust my meds, if needed.  I’m also trying to get back to the gym and eat healthier.  My latest weapon in my ongoing battle are daily smoothies. I love veggies, so that was never a problem with including them in my diet, but fruit was always an issue.  I’m not sure why, but I just never was a big fruit eater, even though I knew how good it was for me.  Now, every morning I make myself a yummy smoothie with a variety of fruits, spinach, coconut water, chia/flax seeds, and maca root.  I feel good that I’m doing something healthy for myself and actually notice an improvement in my energy level.  I do have to be careful and avoid certain things that are normally good for other people though, like Echinacea (which can speed up my already overactive immune system and lead to a flare), or even garlic (which can also overstimulate my pesky immune system).  So, even though I may never totally win the war with my body, I’m hoping to at least call a truce for a while and live to fight another day.

 

 

Live like your life depends on it

“You are exercising regularly, right?”, my Oncologist asks each time I visit.  My answer is sometimes ,”yes, of course!”, or, most recently, “um, I need to get back to doing that.”  Currently, I’m in the process of getting back to doing that.  I know about the studies that show exercise reduces the risk of recurrence and the importance of a healthy diet to maintain a strong immune system.  I know that I was very, very sick and I never want to go through that again.  But, knowing something and putting it (and keeping it) into practice can be two very different things.  Part of the difficulty for me is that, even though I survived cancer, I still have to deal with having Systemic Lupus.  Lupus makes me super tired and super achy, which makes it super hard to feel like exercising.  The catch-22 is that the more I exercise, the better I feel and the worse I feel, the less I actually do it – which makes me feel even worse.  It’s also easy to become complacent during the times when my labs are coming back good and I don’t feel so bad.  And, other times, I just want to pretend I’m perfectly healthy and ignore my past and current medical issues.  But, ultimately, I have to give myself a reality check and acknowledge that I need to live like my life depends on it – because it does.  I must stay on top of my health, not only for myself, but for my kids and my partner.  So, I’m making a real effort to pay better attention to myself and my body.  I found a great exercise class for breast cancer survivors, switched gyms to a closer, more convenient location, and have started making fresh smoothies every morning.  I’m also taking additional medication for my Lupus, which should help decrease the pain and fatigue so I can keep doing what I have to.  I’ve already noticed a small difference and hope to keep building on that.  So, next time I visit my Oncologist, and she asks her inevitable question, I will be able to answer, “yes, of course!”, and feel good about doing all I can to live a long and healthy (as healthy as I can be) life.  Now, if you’ll excuse me, I need to go mix my maca root, chia seed, spinach/mango/banana/soursop/pineapple smoothie then head to the gym – cheers to your good health (and mine)!

Lupus Walk South Florida

 

end lupus

 

One of my goals for 2015 is to get more involved with fundraising and supporting community events.  So, I just signed up to participate in the South Florida Lupus Walk in May.  As a person living with Lupus, I know first-hand the toll this disease can take, not only on the person suffering from it, but also on those who love and care for them. I would be ever so grateful if you would consider donating toward my goal of $250.00.  Thank you!

You can visit my fundraising page at:  http://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1116308&supId=418617207&extSiteType=1

 

 

 

 

 

Port Authority

In the spirit of full-disclosure, I am not an expert nor an authority on chemo ports – I just thought it was a clever title.  I do, however, have some very personal experience with having a port myself.  It signaled the official start of my treatment for Stage 2 breast cancer in 2011.  The way my medical team described it to me, it seemed like an easy enough “minor” procedure.  “Oh, they’ll just place a little port underneath your skin to make it easier to get your meds”, they told me. Well, that doesn’t sound too bad, I thought. I asked if they did it there in my Oncologist office and they told me no, they would send me to a doctor who was very good at placing ports. Fine, no biggie. When the day came, I set off to the hospital with my Mom.  I wasn’t nervous, because I really didn’t know what was in store. To avoid freaking myself out, I made a point of not going online to google my diagnosis, prognosis, or treatment, so I was blissfully unaware.  Turns out, I was in for a surprise.  The first surprise was when they brought me into the surgical area and had me disrobe and put on a gown.  For some reason, I thought they would just bring me to an exam room and magically put in whatever this port thingy was. Then, they told me they were going to start a big, scary IV to calm me down, but not put me to sleep.  Up until that point, I had been calm.  Now, I was starting to get the picture- this was serious stuff.  They didn’t allow my Mom in the area with me, so I was left by myself wondering what the heck I had gotten myself into.  I was getting scared.  They eventually came and wheeled me back into a large, freezing cold, operating room.  There were monitors everywhere and people in scrubs looking very serious.  They were scurrying around, setting up equipment and putting a curtain in front of my face, so I wouldn’t be able to see the preparations or procedure.  I remember shaking from a combination of the temperature in the room and my realization that something big was happening.  I was officially a cancer patient.

The doctor introduced himself to me.  I remember he had beautiful blue eyes.  I remember nothing else about him now, not even his name.  I remember being horrified that I was awake and could hear them all talking about what they were doing to me. I could feel them putting in the port and adjusting the tubing in my chest and neck.  The local anesthesia took away the pain, but not the sensation of what they were doing.  I prayed it would be over quickly.  I wanted to cry, but was too stunned by the whole thing.  Afterwards, back in the recovery area, they told me I shouldn’t feel too much pain and wouldn’t even know it was there.  In reality, it was one of the most painful things I’ve experienced.  It actually took a few weeks for it to stop feeling like I’d been sliced by Freddie Krueger.  Even now, a few years after having my port removed, I sometimes feel a dull ache where it used to be.

Fortunately, after my traumatic initial experience with the port, I actually grew to love it.  It was so convenient to get all my meds through and to get blood drawn from.  I got used to seeing the weird lump under my skin and the tubing that connected to my carotid artery.  Some days I wish I still had my port, especially when I have to get blood drawn – no easy task when it comes to my stubborn veins.  But, my port is a not so distant memory now.  I’m reminded of it every time I look in the mirror and see the scar it left behind.  I like to think of that scar as a badge of honor, something that signifies the battle I fought  – and, thank God, the battle I was able to win.

* For more information on chemotherapy ports, you can visit  http://www.cancer.net/navigating-cancer-care/how-cancer-treated/chemotherapy/catheters-and-ports-cancer-treatment

WordCamp Tampa 2016

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