I'm doing it

Welcome to my blog. I’m writing this blog for a few reasons. One is to help me process and deal with the ongoing, chronic heath challenges I have. Another is to help others who may be dealing with some of the same things. A third is to help my family, friends, and those in my daily life better understand what is going on with me and what I’m dealing with.

Having an “invisible” health issue or two is challenging. People don’t always understand that I’m dealing with some significant issues, including osteoarthritis, autoimmune disorders, a genetic disorder, and other related -osises, -itises, and such. I know, I sound like a hypochondriac. Like, how can one person really have ALL these things? I typically deal with them by 1. Ignoring them as long as I can; 2. Taking necessary medication; 3. Talking to people close to me; 4. Finally giving in and talking to my doctor about it, which usually leads to another specialist in my life. I admit this isn’t the ideal way of addressing them, which is why – in part – I’m starting this blog.

This cornucopia of health issues started early on, but really began to manifest itself in my 20s. Initially, I was having difficulty with dizziness and tiredness and occasionally passing out. My doctor and I thought I might have hypoglycemia. I did a Glucose Tolerance Test that came back normal, but hypoglycemia can be somewhat intermittent, so I started paying closer attention to my diet and things seemed to improve.

Also in my 20s I discovered that I had asthma. I always knew that I had allergies and was prone to bronchitis. In my early 20s I got a severe case of bronchitis that led to me seeing a pulmonologist and finding out that I had exercise and allergy induced asthma. This explained a lot why I thought I was going to die every time we had to run suicides in basketball. Getting my allergies under control was key. Once we accomplished that and I recovered from bronchitis things started to improve. Sometimes my asthma would flare up, but over time I learned how to anticipate it and keep it in check most of the time.

The big event in my 20s was my first knee surgery. I always loved playing sports, dancing, twirling, and in general being active. I continued to play softball into my 20s. Catcher was my favorite position. I wasn’t afraid to take on a runner trying to score at home, and I loved chatting with the batters and trying to get in their heads when they came up to bat. One day I was playing in a company softball game. I squatted to catch a pitch, and when I went to throw it back to the pitcher, I couldn’t stand. I just fell over right there at home plate. My knee hurt like nothing I’d experienced before, but I thought I just had a cramp or something. I hobbled back to the dugout and sat out an inning. I then went out and played an inning in right field to see how my knee was, and I even batted when we were up and made it on base. Next inning, I went back to catcher. I caught a few pitches with no problem. Then again, I went to throw back a pitch and just fell to the ground, screaming and crying. That was it. I couldn’t move. The pain was excruciating! Someone called an ambulance, and I was taken to the Emergency Room. I cried for two hours straight. That’s how long it took them to figure out what was going on and give me some pain medicine. I had shredded part of my right meniscus and had what is called a bucket flap tear that was getting pinched in my knee hinge every time I tried to move. They wrapped my leg up, put it in a brace, gave me some crutches and meds, and sent me home to follow up with an orthopedist. My first surgery took place a couple of weeks later.

Now here I am, 30 years and 13 surgeries later, and I’ve discovered that I have the following -itises and -oses: Osteoarthritis over my entire body, asthma, a hiatal hernia, Hashimoto’s (autoimmune thyroid disorder), Celiac (autoimmune gluten intolerance), sciatica, scoliosis, spondylosis, stenosis, kyphoscoliosis, cervical radiculopathy, disc degeneration (cervical, thoracic, and lumbar), hypermobile Ehler’s Danlos (genetic collagen disorder), and Psoriatic Arthritis (autoimmune arthritis). Along with all of that, I’ve started having autonomic nervous system issues, including heart rate and blood pressure issues, trouble regulating my body temperature, my hands and feet turning white/purple/numb, extreme fatigue, and fainting. My army of doctors includes my Primary Care Physician, an Orthopedist, a Physical Therapist, a Neurologist, a Cardiologist, a Rheumatologist, an Endocrinologist, a Neuroendocrinologist, and an Electrophysiologist!! Yes, those are all REAL doctors and clinicians. I’m also now taking 17 prescription medications on a daily/weekly basis (not including vitamins/supplements), and I know I’m getting at least one more in the next few weeks. It’s a lot, which is why I’m here.

Most days I do pretty well with it all and just live my life. I have a husband and a 27-year-old son. I have nieces and nephews that I love spoiling as much as possible. I own my own marketing consultancy and enjoy taking care of my 15-20 clients, one of which is a magician who is a lot of fun. I have friends that I love hanging out with. Life really is good, and rich, and wonderful. But sometimes, I have flares, or episodes, or whatever you want to call them, that cause my health situation to spiral. I used to ignore these situations as much as I could, but I’m trying to address them sooner and not let things get completely out of control. The problem is all of the  -itises and -oses are interrelated. The symptoms are sometimes vague: fatigue, rapid heart rate, cold intolerance, GI issues, joint pain, headaches, etc. My neurologist doesn’t want to “fix” (do surgery on) my back because of my Ehler’s Danlos (hED). My heart issues might be from the hED, but it could be from the Hashimoto’s or some other as yet undiscovered autoimmune issue. My hip pain might be osteoarthritis, but it could be from the Psoriatic Arthritis (PsA). Another issue is the way our health system here in the USA is organized. I see an Endocrinologist for the Hashimoto’s, a Rheumatologist for the PsA, a Cardiologist for my heart…you get the idea. These specialists are wonderful, but they don’t all talk to each other. As a result, I now carry around my COMPLETE medical history in a 3-ring binder and provide all my doctors electronic updates on doctors’ visits and various tests. I told my PCP the other day that I feel as if I’m getting a medical degree myself as we try to figure things out.

I try to keep a smile on my face and approach everything with a bit of fun, self-deprecating sarcasm. But sometimes the anxiety gets to me. I’m hoping that sharing my experiences here will help me accept and understand everything better. And if it helps someone who reads something here, that will be awesome. I hope people who read this will take the time to share their comments and thoughts back with me. You can post them here or you can email me at aclarusmarketinggirl@gmail.com. I look forward to you sharing this journey with me.