The General Manager Of Your Health: Internist

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.

  • val0525

    Marisa,

    I think this is important for everyone. With many patients seeing many doctors, someone needs to be the overseeer.

    You do have a compliated case and I think that having a game plan in place will be a relief.

    it is so important to be as informed as you can be also about what you putting into your body.

    I hope that you are able to get some relief.soon.

    Love Val

  • val0525

    PS-I am always here for you

  • TR

    I can completely understand your feelings and I’m not the patient. My daughter started battling her fight with IBD in 2010 and underwent her first real battle and 2 months in Hosp in 2012. This visit left her a different person. We ( she is now 12) were sent out in to the world with a new body image to some how figure out and believe from Hosp that she would feel better. 6 months later all those feelings you posted, I completely relate too. I am the person who is fully in charge of her health, their is no general manager who is experienced enough to give advise. The doctors have no clue how to treat this disease as every single person is unique. I have battled, argued and researched so many times and realize, if I don’t stay on top of things and advocate for her, mistakes will happen. Simple mistakes like doctors not listening to feeling dizzy, black spots, fatigue; 2 months later and no lab work- mom says to doctor ” have you checked her iron, seems like this is anemia”. Mom was right and child felt Terrible for months over a simple blood test. Another example: We need to hospitalize your daughter, she lost too much weight due to ibd. Mom says “No, she had the flu and the weight will be back on in a week just like a normal person”. Mom was right. And the list goes on. I am so sorry you have been dealt this IBD stuff– you are right, Nobody can possibly understand how terribly difficult it is unless they have lived it! I pray every single night that someone will figure out how to help IBD patients. I do believe and have faith that something will give very soon. People are learning and listening finally!!!! My Natualpath has been our savior. We are feeding the body and trying to heal the immune system and not concentrate on the disease. It might not cure IBD but it certainly is helping!!! Take care and always have faith things will get easier. My daughter literally just this morning wrote in a card: ” You can think of the bad things or you can think about what God has given us”. She then goes on to say ” Follow the trail to find how you should or would want to live your present day” and attached a picture of a home among a rainbow slide. Even with such bad moments, she shines!!

  • Jodi

    i, too, hope this is the start of a new chapter and I am so proud of how you trust your instincts. You really always seem to be right on. I hope this is someone who can help you “manage” all you are going through.
    love you.

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