Be Your Best Advocate

I know it’s been a little while since my last blog. I received some very touching emails from friends sharing the situations they were in or facing on behalf of a loved one. I’ve taken some time to really process these before I’ve been able to respond. People truly are going through more than most people can even begin to guess. Every day the people around you are facing their own personal battles that they have chosen not to share for their own reason, but they maintain a smile on their face in public. I applaud these friends for their strength and determination to find the good in their situation and for doing the hard work it takes to get better or to help their family members to heal. My heart truly goes out to them and I pray for a speedy recovery...

The weather has also been beautiful here in Northern California until today, so I have enjoyed some beautiful walks. (Thank you Steph!) The last few days we walked about 3 miles each day, which isn’t much, but it is a start right? It’s amazing (and a little frustrating) to be so sore after such short walks! When you have worked so hard to stay in fairly decent shape and to see it all dissolve so quickly is a bit disheartening, but it only works to strengthen my resolve to get back to or better than I was pre-surgery.

I also have strayed into “public” more than ever. Both boys had their last basketball games within the past week and I really haven’t made it to any due to my recovery. Buzzers, whistles, and all was something that was difficult to listen to, but I sucked it up and with some Tylenol I made it to both boy’s last games of the season. Jake plays on the Placer High School Freshmen team and Andy plays on the JV team for Bowman. It was really great to see all the kids and parents. We’re from a fairly small community, so as nervous as I was to be in “public” it was wonderful to see everyone’s smiling faces and to have the support of our “community.” Both boys did a great job and I felt so fortunate to have had the opportunity to watch them. Thanks to everyone for being so caring and generally awesome! Special thanks to my wonderful and thoughtful visitors, I am overwhelmed by your love and support.

On to my main topic today… Hindsight is 20/20 right? In the last month and a half I have had time to really reflect on my situation and the medical care I received prior to my diagnosis. As you know from reading my previous blogs, my tumor was pretty large and had been there for a very long time. Adding together all of the pieces of the puzzle, it’s entirely possible that this could have been found years ago if I had been a better advocate for my own health. Let me recap a little bit…

While I was in the Army, I started to experience severe migraines. They were bad, so bad that I often had to get shots in the ER to make them go away. Otherwise I had to take an RX right away when I started to feel one coming on. These migraines have continued for the past 18 plus years…

About 5 years ago I started to get vertigo. I went to Kaiser and they said it was an inner ear issue. They sent me to the ENT and that was about it. Around 4 years ago I was in my warehouse at work talking to a couple of my employees and out of nowhere the right side of my body started to shake uncontrollably. It was definitely a little scary to say the least. I called and made an appointment for my doctor that day and she examined me and did bloodwork. She couldn’t find anything so that was basically that.

I continued to get the shaking, but found that if I just held still, planted my feet firmly on ground and waited 30 seconds or so, the shaking on my right side would eventually go away. I’d already been to the Dr. so I didn’t go back. Probably not the smartest thing, but I was busy with work and kids and all and didn’t want to waste time with more appointments that didn’t get me anywhere.

A year or so later, I went and saw a naturopathic Doctor and explained what was going on. I was prescribed a whole mess of herbs and all. I also had examinations at the VA Clinic to which they prescribed me more prescription drugs. I still got nowhere with the shaking. Nothing was helping and the symptoms worsened. I remember running in our back field and feeling like there was literally something attached to my right side. It was something I could physically feel. I felt like if I looked over my right shoulder there would or should actually be someone or something there. It was actually fairly disturbing.

With the risk of sounding coo-coo’s nest to some of you, it really felt like a presence or something. I called on God, the Angels, used sage, whatever I could that I thought might help me to get back to normal. Clearly after going to many doctors with no relief, I was desperate. Like I said, hindsight is 20/20. Now I would absolutely do more research on my own. Looking at all of my symptoms I would have definitely discussed/requested a CT scan at a minimum. Thinking back I'm still shocked that no one ever even suggested a CT or an MRI.

We are programmed to listen to our doctors and our healthcare system is designed to make money. These two factors end up competing with each other and doesn’t always end up with the best result for the patient. I went through 3 very different healthcare systems with a myriad of symptoms and my tumor was still not found. When I went back to my primary care doctor after my surgery, she actually teared up as she apologized for not finding the tumor when I first came to her about the shaking. We are all human, and no one is perfect. I don’t blame her or any of my doctors. It has to be a partnership between us and the healthcare system. Always follow your instinct/gut- you know yourself and your body better than anyone else. If it doesn’t feel normal then it’s probably not.

With many health issues you know when something is wrong and when it's better. I strained my achillies a couple of years ago from overtraining and it let me know when I was overdoing my training. With this meningioma, I had zero idea that it was there. I was living a very, very full life and I was going non-stop as many of you can attest to. You know when something's wrong, even if your doctor doesn't...

My hope for you, is that if you are experiencing something out of the normal, to please see your doctor and if you’re not getting the support you need then see them again and ask more questions. If you’re still not getting the help you need then ask for a second opinion. Clearly I knew that something wasn’t right with my body even if it didn’t show up with the basic exams, tests, or blood work and the doctors couldn’t find it. I should have been more persistent in finding out what was wrong with me. I wasn’t, so it is my hope that after reading this you WILL BE! I was very fortunate that my tumor was something that for the most part could be extracted with surgery, other medical issues can’t be and the sooner they are found, the better the chances are for a long and healthy life.

My tumor had been there so long that it literally changed the shape of my brain and some brain cells had to be removed because the tumor was so large and had grown into my brain so much. Had this been found earlier, perhaps the extraction wouldn’t have been so difficult and it definitely wouldn’t have resulted in a seizure two days after Christmas. Luckily for me, I will recover. I will be getting an MRI every 6 months to a year as its common for these types of tumors to reoccur, but with the frequent MRI’s it will be found much earlier. I pray that it never comes back!

Again, the take away my friends is to be the best advocate for your health or the health of a loved one that you can. I’m not talking about being a hypochondriac, but you know when something’s not right if you listen to your body. Please be good to yourselves and take care of your health.

Many blessings of good health and happiness to all of you!

Mel

#meningioma