Day 1: Opening Up

Creating this blog is the first fun thing! I really enjoyed designing and laying out the site as well as figuring out exactly what this project is all about.

Now, I have to think about how and if I will share it with friends and family. I would like to have readers but whether I would prefer they be strangers or loved ones, I cannot say. Putting this out there is not something I would normally do. I am not good at reaching out when I’m in need. Not, at least, when it comes to my arthritis.

In the past, when I have had flare ups, I would just hide in my apartment for a day or two until it passed. But both the longevity of my current problems and the fact that I do not live alone prevent me from doing this.

The issues I have now started a year ago. Previously, I was not taking anything for my arthritis but knew that it was time to start again. I wasn’t having major issues but also was not 100%. I started on Enbrel, an injectable that worked well for me in that past. But I kept getting infections and had to be tested for meningitis (ER visit number one). The only way to test for this, for those that don’t know, is to get a spinal tap. Thankfully, I did not have meningitis but I did end up with a spinal headache due to the pressure change on my brain when they drained the spinal fluid. The only relief I could find for this headache was to lay down. I spent 10 days in bed and when I was finally able to get up and around, I was having chest pain, dizziness, and shortness of breath. Doctors suspected I had a blood clot due to all the bed rest (ER visit number 2). I did not have a blood clot, perhaps just deconditioned from the bed rest?

From the imaging done for the clot, doctors saw that my lymph nodes were swollen. I was in a Walgreens when I got the call from my doctor saying that I needed to have a lymph node removed to test for lymphoma. One thing I am good at is keeping my cool long enough to get to a private space. I called my husband (then fiancé) from my car in tears, scared about the threat of cancer. Two short weeks later, I was having the procedure. Again, thank goodness, the tests were negative.

However all this testing and all the time resting left my arthritis totally enflamed. And for the past seven months, we have been trying to get it back under control with a combination of medications and cortisone injections. It’s been a period of trial and error during which I went back to work, got married in Mexico, was in a wedding in New Orleans and had my own big reception in Chicago. I was not hiding from people then.

And even though, my doctors did a good job of pumping me up for these events, they could not totally mask my discomfort. I got a lot of questions and concerned looks. When I reflect on it now, I realize that it did not go much farther than that because I shut down those conversations with a look and a one-word reply.

The one person I really can’t hide from though is my husband. He sees me at my very worst, when I need help just to get out of bed. On those days, he becomes my caretaker, getting me food, helping me dress and providing entertainment. Even if he has to go to work, he makes sure I’m all set up with everything I need before he leaves. I could go on and on. Seriously, the man’s amazing.

It is with his support that I start this adventure today. And I think it is the push I need to really open up about this part of my life that has been so private for so long.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: