I have been feeling so frustrated and at a loss recently. It seems every doctor I come across cannot seem to grasp the complexity of my situation, thus leaving me to feel like they are incompetent to take care of me (and then they prove that to me very quickly). After dealing with so many physical issues for almost 13 years, I know my body inside and out and do understand my psyche as well. I believe I have said this before but I will say it again today – I am done playing trial and error with doctors and medications. I need guidance and direction. I cannot be left to micromanage everything all of the time because if I don’t, so many things fall through the cracks. It is exhausting and leaves me feeling like it is impossible for me to surrender an ounce of control. I am on high alert all of the time.
It is 5am and I have not slept so pardon the rant that may or may not have already become of this post but there is a lot on my mind. A year ago around this time I was put on a medication that would have ended up killing me if I wasn’t so “on my game.”
To Clarify: I would be dead right now, following months and months of unbelievable physical symptoms and emotional turmoil, if I did not discover that it was a medication issue and NOT me. I had to figure it out in the state I was in. I had that burden on me. I cannot even describe to you how awful this experience was and how many times I told my parents I thought I would not make it to see Jeremy (my brother) again.
But I did. Somehow, I figured it out, weened myself off of this god awful medication and within three days, I was a completely different person.
I had an appointment with my internist on Wednesday after not seeing him for quite a while. I check in with him every now and then but since I have been under the care of my surgeon for so long, I haven’t really needed to see him for routine things. But after doing a lot of thinking this weekend and realizing I needed to make some changes , I made an appointment with him since he has consistently been the only doctor who has managed to “get it” without knowing me very well, who calls back, listens, gives me a lot of time, is very intelligent, and is just a warm human being.
I walked out of there the other day feeling hopeful. I desperately need a medical doctor to direct me and be in charge because quite frankly, I no longer have the strength to take on that roll. I am sapped of every ounce of energy I have right now and need someone who I TRUST to take over. Plain and simple. My doctor and I talked for a while about pretty much everything (relevant) that was going on in my life. After he did a full physical exam, we came up with a game plan. Or, a temporary one until I get my blood work back I guess (no jinx, hehe )
He is a gastroenterologist but admitted that I needed to be under the care of someone more “up to date” in their training since it was only his sub specialty. I haven’t had great experiences with adult GI’s and since my issues have been more surgical, I haven’t felt the need to see one. While my doctor highly recommended I see a gastroenterologist due to the nature of my IBD, he was gauging my comfort level during this conversation which I very much appreciated. I was also told what I had never heard before was that I should be sure to get my eyes checked more often as an IBD patient. He also gave me the names (in order) of a few local neurologists he recommended that he felt would be a good fit for me.
An internist, as my mom often puts it, is kind of like the “general manager” of your health. I actually left feeling like I had someone else who was going to help me be in charge of some things. I need a doctor who I can work with and for some reason, I haven’t been able to find that. Crohn’s Disease and ulcerative colitis are complicated diseases for not only the patient but for the physician as well so I do understand that the doctor/patient relationship can’t really be smooth sailing. It just seems like I have spent an inordinate amount of time fighting the system and fighting the doctors only to be told after the fact how right I actually was. I do know how this sounds but if you actually lived in my shoes or witnessed some of these experiences I am referring to BELIEVE ME WHEN I TELL YOU, you would get it.
I do hope this is a new chapter for me. I am very confident that this is the place to begin and proud of myself for trusting my instincts enough to be proactive in some of these discussions I have had this past week.