Questioning Direction

Do you ever feel like you have entered a rabbit hole when you were headed to the Interstate? There are days that I try navigating through the medical world only to be confused at the end of the day. This is saying a lot with over 40+ years of nursing experience behind me. I can't imagine those without any significant background in medicine or training how in the world they reach home plate?!

I obtained a diagnosis in 2004 of Multiple Sclerosis after years of being told I had a couple of different diagnosis or positive studies for other things. For 20 years I went to a MS Specialist who literally picked me up off the ground on my first visit and had me feeling the closest to normal I can remember. Some medications worked great some didn't but I knew through these years of good communication with him what types of meds did work. He was fantastic and honestly one of my biggest mistakes was moving away from that State. I not only trusted him completely which is rare but he helped me grow in knowledge with this field. I use to blog about MS and often he would provide me new material to release. He traveled the World looking for new treatments and learning about this condition. He would call just to check in with me if started a new experimental treatment just to make sure I was tolerating it. We had a fantastic Doctor/Patient relationship but didn't realize how VALUABLE this was until I no longer had it.

When you move to a new area especially living with a chronic disease it is just as important to get in quickly with a new good doctor as it is finding a safe place to live. Making sure you have your medical records with you is also a must. Knowing & having this is still very difficult to get in with a specialist period. First many aren't taking new patients, or the wait is forever, some want to review your records prior to even before allowing you to book an appointment. Had a couple that didn't review the records and wanted to start from scratch to re-diagnose. Meanwhile you are left hanging praying you don't have a relapse while just hanging for a decision. I am in the hanging stage still in year 4. Two Neurologists down that didn't work out but have another scheduled for the end of May. Unfortunately I have also set up a new problem revealed from pretty nasty looking lab results moving me in a different direction. Right now I'm going through the rule out phase but have almost ended this. A referral to yet another specialist is also scheduled in May. I am now up to 4 different specialities; Neurology, Rheumatology, Hematology, & Chronic Pain Specialist. One would think having 4 that I should be having at least a couple that are listening and/or providing a treatment. I have 1, the pain doctor. I am extremely grateful for him. He has gone beyond expectations to try and help. For nearly 2 years I have known about the abnormal labs and what this probably could mean. Then it took 1 year to get in to Rheumatology to begin the rule out stage. Now they have basically said it's time to move on to Hematology. It's kind of weird knowing what these abnormal tests are looking like, then have the Director over the department come in and say hey this is what is looks like we are dealing with but now we need to move you to the right specialist. A reality sets in hearing this news yet even with the potential seriousness you still get to wait 4 months before seeing the person confirming the diagnosis which delays starting any treatments. NO HURRY..

The only way I know how to describe how I am feeling is this. I arrived at the airport and have waited on every possible delay to finally to be told I can get on the plane. I'm sitting in the seat, seat belt on, have been told to turn off my devices and put any loose luggage under the seat in front of me. Waiting to be told we are leaving the gate. Meanwhile have witnessed many planes coming and going with many passengers moving past me. Hopefully May I can finally experience the taxiing to the runway soon. I know that there are many experiencing the exact same thing sadly. Trying to be understanding is hard especially when. you see your family watching and waiting.