COMMON QUESTION: What is my life like post-diagnosis?

So I was diagnosed on November 9, 2010.  The first month of my treatment I was on a common antibiotic that caused me to be the sickest I had ever been.  I had to start a medical leave from my job and give in to the sickness of my body.  For so many years I was going by the “fake it ’til I make it” motto and now I had the amazing truth of all my weird symptoms actually having a name!

My doctor at the time told me I had to get worse to get better so I was just fighting the fight.  I was living in Reno at my adorable little house while my husband was in school and working 60+ hours each week.  I was alone and spent most of that first month on the toilet or in bed.  I lost 10 pounds almost right away and was so weak I couldn’t shower on my own.  I remember talking to my one day and I told her how upset my stomach was. She was concerned and offered to pay for some groceries for me to help soothe my stomach. I told her finances were not the problem, but making it to the grocery store was the real problem.  I couldn’t stand or walk much less drive! I was sick and not safe to be home alone.

Me with my amazing and supportive husband <3

It was at this point that my husband, Justin, and I had a very difficult conversation.  We decided that I needed to move in with my parents house while he continued his schooling and work, not to mention he was leaving for Peru in a week and I was going to need a lot of support during his four week internship.  The next couple of days were spent preparing to move back in with my parents (NOT an easy decision to make, but a necessary one).  With a couple of extra eyes on me, my parents began to see how sick I really was.  After only a day or two they had me back in to see my doctor to switch my medication around.  I was only tolerating one saltine cracker each day and felt so weak.  The doctor ordered for me to get my first picc line (a line that is inserted by a radiologist in the inside of my arm with a 40cm line that goes almost into my heart) and this allowed my medicine to bypass my stomach so I could eat food more regularly.  It took me a long time of forcing myself to eat three meals each day before I was much healthier.  I was even offered medical marijuana to help stimulate my appetite.

I also started physical therapy in my house from a local home health company (Yes, this exists and it is amazing!). I did simple exercises that helped me to regain my muscle strength.  I had a few sad moments in my early treatment, like my only day Christmas shopping was spent in a wheelchair getting all sorts of judgemental looks. I also did not have my husband around when I was so nervous about my picc line procedure because he was still in Peru.  All in all, I made it through the first two months.

Justin came back home on Christmas Eve and he spent quite a few days getting used to my new medicine routine. It was much more complex than my original few pills each day.  I now had a nurse visiting me each week, I did infusions in my house and I was able to be a little more active.  We had a family discussion and all concluded that I made so much progress during the time Justin was in Peru that I needed to stay living with my parents where there were so many more family members around to keep and eye on me and help me stay on track with my medications.

This is my shower chair.  I am in love. Ha ha!

Fast-forward to the current time…I am still using a shower chair because I get really light-headed in the shower with all the medication my body has in it.  In addition, my reaction time is slower than I feel safe to drive with.  I am still living with my parents and don’t see this ending any time soon.  I have not worked since November and I miss my job and work family so much. I have a new doctor in Redwood City, CA and he has been wonderful to me. I was prescribed a workout routine for me so I started doing private pilates classes every four days to help build my body up slowly while the medication is breaking it down (Side note – with Lyme, any cardio is not allowed, it actually can make a person much sicker). Also, I am infusion medication about nine hours each day and taking so many oral medications. Justin and I are still living apart and we see each other twice each week.  I am still sleeping a lot each day and my symptoms change at a moments notice.  I can no longer predict my body, which makes it extremely challenging to make plans with anyone.  All the people who spend time with me have had to learn that I am way better to make last minute plans with than making a date on a calendar (this is the opposite to my A-type personality…I used to love scheduling things!).  Oh, and I even own an IV pole to give myself some of my medicine!  It was so funny when I got it…I keep making jokes that I want to pole dance on it when I get better!

The biggest change in my life, above all, is the mentality to feel productive after doing only one thing each day.  Sometimes that is going and walking around Wal-Mart or sitting in a coffee shop with my mom and talking, or on a really good day doing a craft project.  It is no longer a reality to do more than one thing each day! This is incredibly humbling~

One thought on “COMMON QUESTION: What is my life like post-diagnosis?

  1. You are getting better! I can tell by how you're reaching out with a “Twist of Lyme.”. Proud of you. The battle continues and you are winning.

Leave a Reply

Your email address will not be published. Required fields are marked *