Chronically Positive

Down for the Count

Well, it’s happened. I thought I had escaped the “end of rush” winter bronchitis but alas, it caught me. Let’s be perfectly transparent. As much as I would like to to blame Winter in Kentuckiana where it can be 60 today and snow tomorrow, or working with the public, or jokingly claim the Coronavirus made it’s way to the middle of the country, I can do none of these. This is 100% my own fault.

I started to make this a post on Facebook- then it grew and grew until it had a life of it’s own so I am dropping it here. If you have anything to add- drop it in the comments. I am sure I missed something so I look forward to added perspectives. Now here we go!

Let’s talk for a moment about Invisible Illness. It’s called Invisible for a reason. You may see a change in our gait, you may…

The Semester is OVER!

And I am eternally grateful to have survived it. I finished the last of my GEN-ED requirements (YAY) and even squeeked out a B- in the Geography lab. Don’t ask me how because I am the least science-minded person you will ever meet. For Spring, I am taking one Wintersession Sociology (12/23-01/11) class and two classes in regular session. One is another Sociology (so I can work on that minor) and…

Hi everyone! It’s been a busy, busy few months. I spent most of my summer running back and forth between two stores, helping to transition our local community college system’s store into a Barnes & Noble College store. Fortunately, I have an amazing Assistant Manager who held down the fort in the days I was away.

Working both stores went right up to my own Rush which went by in a flash…

Chasing the Cure If you are submitting your story, let me know so that I can follow your journey #ChronicIllness #ChasingTheCure #RA #Fibro #DDD #RheumLung #Pimphigoid

I am a TV watcher to the nth degree. When I was an itty-bitty kid, I could spot logos and sing theme songs way before I should have. My teen years were more hit or miss but I still remember the moment MTV was born- “Video Killed the Radio Star” anyone? Then I became a mom and after Barney, Sharon,Lois and Bram, and Carmen Sandiego the TV went off. There were a lot of years where I was too busy;…

Word of the Day or Another New Normal

Unpredictability.

Lady Gaga said it beautifully in this meme from Mighty Well’s Instagram

Meme Credit: MightyWell Instagram See more here

I saw and shared this meme on my Facebook page yesterday and I thought it would be appropriate for our next “New Normal” post. Before we get into that, I want to note that in researching them in order to give proper credit, I found their site…

It’s a Staycation!

Well, I am half way through a staycation. Theoretically I should be on Virginia Beach but sadly, my poor dad blew a staph infection where they repaired his Achilles Tendon and though they wanted us to go ahead and go, we girls decided that it would not be the same without Mom and Dad so we asked that they try to get a refund.

If you were with me on my Blogspot blog, you know that Dad went…

Random Swelling, Random Thoughts …

Do you have somewhat random swelling? My ankles and feet like to swell, especially when I am on them a long time or when it’s super hot and humid out. My ankles become cankles and my feet look like softballs with little round appendages. Summer in Kentuckiana while I am hard at work? It’s a perfect storm and a relatively painless way to flare.

I am not here to complain about it. It…

Prednisone Giveth, Prednisone Taketh Away…

A few weeks ago, I got my new diagnosis. The Dermatologist put me on long term antibiotics and a cream in hopes that the treatment would take. It just so happened that three days before that (on Friday) my Rheumy put me on a 12 day tapered pack of Prednisone for the flare I had been in for a few weeks. By Monday when I saw the Dermo, it was starting to take effect. I started the antibiotics and…

And So We Have a Diagnosis

I am not going to bore you with the details but suffice it to say my immune system is on the move again. Now it’s begun attacking my skin. This lovely disease is considered rare because less than 1 in 20,000 contract it and most who do are significantly older than I am. My dermo says that this means I have to be very vigilant about seeing my primary care and getting my routine screenings done…

Hurry Up and Wait

It’s funny how we tend to look for simple answers and/or dismiss symptoms even when we know our bodies as well as chronic illness patients do. Either that, or we don’t tie together things that are seemingly random because really, how much more can pile on?

Looking back, I think the latest issues began around/over a year ago. I have had my hair colored fairly regularly since I was 13…

I’ve been playing a revolving game of “Have you ever” in my head for a week or more so I thought I would throw it out here.

Have you ever had one of those flares that when it hits you wonder “Is this the one that will take hold and not go away?”

Have you ever thought you should get a part-time job to pay for your medical co-pays?

Have you everthought that the idea of adding a part…

The 2nd New Normal Is…

Finding workarounds for your limitations.

Some days I don’t think about my limitations at all because those I use are second nature. Some days it’s all I think about. Much of that depends on whether or not I am in flare or doing something different. One thing I know for sure is that I am not alone in this.

There are a few things that I rarely think about because they are now ingrained.…

The New Normal Is…

Adaptability.

When you have a chronic illness, one thing that you learn is that what you’ve always considered to be your “normal” life is a thing of the past.

Before I was diagnosed my “normal” consisted of more than 80 hour work weeks while trying to be a good wife, a good mother and planning to go back so to school. I pushed myself so hard that it was beyond ridiculous. At one…

Since before Thanksgiving, I have been experiencing a big "flare" in my right hip and lower back.  Now- the lower back pain has been going on for literally years and generally I can live with it but this has been high enough on the pain scale that if I so much as turn over while sleeping, the pain is so intense that it wakes me up.  By my calculations this has been escalating and beginning to recede and then ramping back up for 8-9 weeks now.  

So. I went to my doctor this morning and the hits just keep coming. She felt around on my back, felt the "grinding" I was describing in my lower back/hip area and moved my joints around. She said that I have osteoarthritis in my lower back and possibly a rheumatoid nodule in my hip.  Between the RA in my hip and the OA in my back- it's causing muscle spasms- which is why there is so much pain.  Oh- and she gave me orders for another Chest X-ray because she didn't like the looks of the one we did in June.  

She doubled my neurontin to 600mg 2x a day and told me that the only other treatment (because- of course- there is no cure) is exercise and weight loss. If I didn't know she was exactly right, and I didn't know that she's a good doctor who only has my best interest at heart, and if I didn't know that I am uber-bitchy because of the pain, I would have snapped at her and said something to the effect of "no shit- but how am I supposed to exercise and lose weight when I am in constant pain?" Big sigh

Essentially that means I can either get my butt up and out of the house at 5am to get to the therapy pool at the Y so I can walk and exercise in there (because regular walking HURTS) OR I can pay for PT- and exercise in their therapy pool. I am taking the first option starting tomorrow (Saturday-because I can find my bathing suit and go at 6 instead of 5) morning.  

When I left the office to drive back across the bridge to Indiana, I just want to curl up, cry and then sleep.  I wanted to desperately.  Unfortunately work calls so that is just not an option.  It's such a busy time of year for us in the store that a pity party is just not viable right now.  I am working 7 days a week for a few weeks and then I can relax a very little for the next following 2 weeks before my inventory.  By then, hopefully, I will be beyond the pity-party stage and can just relax.  

I was talking to a dear friend about this and she said "This year stinks already!"  I told her that I won't allow it.  Thirteen is my lucky number- I WILL make it work for me.   I just have to get past this, get working on the weight loss and reach for the stars. I don't know how yet, but I will not let this hiccup stop this from being a great year!