Today is Monday and in a few days my husband and I will be going to the training conference for MS advocates in Boston, MA. My husband is my care partner and also my best friend. We have had a lot of "firsts" together, including our trip to the east coast. We're staying at the Renaissance Boston Waterfront Hotel. We may try to venture out a little between meetings or maybe we just relax as much as possible since the 3 hour time difference will affect us.
From Boston we will fly to New Jersey to visit my sister-in-law for one day, maybe go to Central Park for a bit of sightseeing. This will be my first time meeting her in person even though we communicate a lot thanks to Facebook. My husband hasn't seen her in a very long time so we are really looking forward to hanging out with her and her husband.
Stay tuned for updates about our east coast journey.....
Having MS has shown me a side of health care that I never thought I'd see. The world of Neurology. My first neurologist is very good in the MS world but I'm afraid that when it comes to the human element, his people skills are not good at all. I will refer to him as Dr Terrorist. When I first started seeing Dr Terrorist it took me a while to catch on to his rude behavior. I would chalk it up to a bad day because he wasn't always that way. During discussions with other MS patients, at least 90% of them always had a very terrified expression when I would mention his name. Their experiences with him were way too much for them to handle and it didn't take long for them to look for someone else.
Then the day came when I couldn't take it anymore. I cannot truly remember specifically why I left, it was a series of things regarding his behavior. He was just too disrespectful.
The next neurologist that I chose didn't know much about MS at all. He was more of the psychologist type. Let's call him Dr Shrink. I didn't do my homework and I assumed that all neurologists would know how to treat MS. That's when I recognized that neurology has many, many sub fields and when I think about it, it makes perfect sense. MS affects our central nervous system and anything that's central is usually pretty complicated. I relate the central nervous system to a computer. Dr Shrink was great because he really did care. I was at least able to discuss my concerns with a doc who would listen. Since he didn't know much about MS, he is the one that sent me to UCSF where I was exposed to even more neurologists.
At UCSF (Univ. of California San Francisco)I met another type of neurologist. One who specializes in MS in African-Americans. I shall call him Dr Afro/MS. If you follow my blog then you have read my post about this. Dr Afro/MS is the one who suggested a more aggressive approach to my treatment which is my current treatment, Tysabri. Now, the funny part about this is that Dr Terrorist and Dr Afro/MS are very good friends and colleagues. Soooo, I eventually ended up going back to Dr Terrorist because he really knows his MS and I needed a local doctor that I didn't have to educate about my condition. Plus that gave me access to Dr Afro/MS without having to travel to San Francisco. It seemed like a good idea at the time.
For the past 3 years, I handled Dr Terrorist pretty well because I didn't have to see him very often. Recenly Dr Terrorist hung up on me twice for no reason. I had an appointment scheduled with him and I called to find out if it was really necessary for me to be seen since I had just saw him a month prior and I was doing very well. I will admit that I am very forgetful at times. He told me to just come in, but then he hung up. He never answered my question, and he didn't say bye. So I call him back and said, "I think we got disconnected somehow." Once again with no explanation he tells me to come in and hangs up. I know that if it was important he would've told me. You hang up on me once, shame on you, you hang up on me twice, shame on me. There wasn't about to be a 3rd time. This was the final straw of disrespect. My husband was ready to pay him a visit and trust me, in this visit Dr Terrorist would become Dr Humble and would not have the upper hand. I think my husband just wanted to teach him a thing or two about respect. Having MS is hard enough without being treated like a loser by the one whom you depend on to manage your condition.
I attempted to schedule an appointment with another neurologist. The first group of neurologists that I contacted had a scheduler who wanted to know who reffered me. I told her that I referred myself and that I was looking for a new neurologist. That's when she informed me that they do not take previous patients of Dr Terrorist because apparently he does all of their hospital calls. What does that have to do with me? Whatever happened to patients rights? This is an entire group of neurologists. Can they really refuse to see a patient based on these grounds? Now I'm very frustrated and sad and mad and at that moment I just burst out into tears. That's when I realized that there was a "Conspiracy in the Biggest Little City." That only left about 2 or 3 neurologists in the Reno/Sparks area to choose from that are familiar with MS. First I prayed, then I contacted the TOUCH program. This is the program that every doctor and patient must be registered with in order to prescribe or receive Tysabri due to the high risk associated with this treatment. I reported Dr Terrorist then requested their assistance finding a new neurologist in my city.
In the meantime, God was working on a plan. I get teary eyed just thinking about how this all went down. You see, by this time I had a good relationship with a well known coordinator who actually helped me become an MS advocate. How appropriate right? Well at my first speech last month, the coordinator introduced me to a local neurologist who agreed to see me. I will call her Dr Savior. She was also good friends with the guest neurologist at the dinner. This guest neurologist from New York shed some light on MS that I had never heard before. I consider him to be an ally because he knows all 3 sides of the fence: doctor, patient and treatment. He has MS and is also on the same treatment, you guessed it Tysabri. Do you see how God worked that all out? Remember earlier I mentioned that the first thing I did after breaking down in tears was pray. What are the odds of me ending up as a speaker at a dinner where I would not only meet Dr Savior but also be introduced to a neurologist who was also a patient, Dr Ally. And let's not forget the coordinator. We were all in the same room at the same time and I didn't even get a picture.
I had my first appointment with Dr Savior 2 weeks ago. She understood everything that I was going through, including the "Conspiracy in the Biggest Little City." She doesn't have to rely on any of these other neurologists when it comes to her patients. It turns out that Dr Terrorist didn't discriminate when it came to his behavior. He is this way with other doctors and anyone else who comes in contact with him. So you mean to tell me that every body is scared of him, not just his patients? He should be retiring soon.
I left my appointment with Dr Savior feeling so liberated and I cried but this time it was tears of joy. I didn't realize the level of anxiety that I had until it was all over. Thank you Lord for ordering my steps and using people to answer my prayers and bless me.