Medical Updates
I've held off on writing about this, mostly because I was too overwhelmed. Too pissed. Too frustrated. Too sad. Just too everything. Here's my super venty rendition of how much I hate dealing with my medical nonsense.
I had my first appointment with my new primary care physician last week. It didn't go super well. I thought parts of it went well, but I'm not a great judge of that, because of my whole new doctor anxiety thing. They checked me in, gave me the normal, tell us all about yourself form, and sent me in to have my vitals checked. I talked to the nurse, explained for the third time that the medications forever linked in my chart from my ER visit are the correct medications, wrong dosages. I explained I needed one of my medications refilled, I only have two days remaining. I even brought in the prescription bottle. I also explained why I had been in the ER and that yes, I had originally made this appointment to see the doctor to get a referral, but things got bad and I couldn't wait and now I was already under the care of a neurosurgeon.
So the nurse asks where I got the form that I'm filling out and I tell her they gave it to me downstairs. She informs me I need to finish filling it out because the doctor won't see me until it is complete, but that it's actually the wrong form. She doesn't want to make me fill out two, so she'll make it work, but he's not going to be happy. Then I finish it, take it out to her and she brings me a release form and asks me to list my old doctor and the neurosurgeon info on it so they can get my records. I do all of that.
After I give all of the information, I hear the doctor in the hall asking about the form I just filled out and the nurse explaining that they gave it to me at check in and she didn't think he would want a delay by having me fill out a new one. And he comes in the room. He starts asking me about my back and I explain all of it and he says fine, deal with neuro. Then he gets to the part about how I'm a smoker and goes on and on about how everyone knows smoking is bad for your heart and lungs but most people don't realize how bad it is for your spine. Yeah, doc, I get it. Smoking kills. He then sees Mom is deceased so he starts asking questions. I give him the whole spiel, but kinda quickly. Then he starts asking lots of medical history questions about mom and I start tearing up. Keep in mind this is 3 days after I was with my family helping go through a bunch of Mom's belongings. This is right after I finished telling this doctor my mom just passed away. He hands me tissues. And says, oh I'm sorry, she's recently deceased. I say yes. And I'm trying to get my bearings, because I'm crying in a doctor's office. I'm already not comfortable and now I'm overly emotional.
He starts asking me questions that sound an awful lot like a depression questionnaire. No, I'm not too sad to do things. Yes, I'm sad sometimes. My mom just died. Yes I'm under stress. But I'm back at work now and things are mostly normalizing except the back issues. No I'm not having troubles sleeping. I have obstructive sleep apnea and I faithfully use my CPAP and have no issues. I have fatigue because of my back. I'm not constantly sad, just at times. Then he asks if I want to quit smoking and I say, probably at some point. Then he was back at the form asking me questions based on my answers. Next thing I know he's telling me he is prescribing me Singulair for my allergies and Wellbutrin to help me quit smoking and help with my mood and I need to go for labwork and follow up with him. I tell him I don't think Wellbutrin is a good idea. I've been on antidepressants for off-label use before and I have had bad side effects. They make me mean and I really think it's a bad idea and he apparently doesn't seem to care. Honestly at that point, I don't think I had the fight in me to disagree or argue anymore.
I was a little shocked and honestly ashamed. Why couldn't I seem to speak up for myself? Why was this man so sure I needed to take this medication? Why would I have been capable of arguing for anyone else sitting in that patient seat but I'm incapable of speaking up when it's for me? So I decided maybe I needed to just process the information.
I left the doctor's office, went to work, went to the pharmacy to pick up my prescriptions. They had called in the new prescriptions, but not the one I actually needed. So the next day I called the office and had them call in my topamax, which I take to prevent migraines. I considered talking to them about the Wellbutrin, but I didn't. I couldn't. I also didn't actually take the medication. Because when I checked the paperwork they gave me when I left the doctor's office, to make sure they had noted I was to continue that medication, I happened to notice that the doctor had diagnosed me with depression with anxiety. And I was furious. How could you diagnose me with that when I already know the depression questionnaire and I know the answers I gave him? He didn't give me one of those papers to fill out and put in my chart. I didn't sign anything. He just made it up? I'll give him the anxiety. Anything to do with the medical field anymore gives me anxiety, but depression? Depression that would justify medicating me after less than 3 minutes of conversation and 5 tears? No, I'm sorry.
So I let it be for a little while because I knew my new MRI was coming up. And that had me filled with a different level of dread and anxiety. So I showed up yesterday morning for my MRI and filled out their questionnaire about my tattoos and any metal in my body and had I ever had contrast before. And when I turned it in and the radiologist noticed I had just had scans done last month, he called up to check and make sure the orders were right. The nurse apparently decided he should just scan my lumbar spine instead of redoing all of the imaging as ordered. So my 2.5 hour MRI that was supposed to be all new images of my brain, cervical, thoracic and lumbar spine? Nope. Just my lumbar. When the radiologist told me they were just doing my lumbar I questioned him three times, explaining in detail why there were orders for new imaging. Explaining what was found and that it wasn't detailed enough, but according to him it didn't matter, we were just doing the lumbar spine. Then he had the audacity to look at me and say "You're awfully young to have all of this happening to you." I said something along the lines of "Strangely enough my age doesn't seem to stop any of it from happening." or some shit like that.
As soon as I left the building I called them and spoke to the NURSE who changed the order for my MRI. Because according to her, my neurosurgeon is on vacation until Monday, so when the radiologist called for clarification, instead of telling him to do what was ordered, she took it upon herself to go off of his dictation to figure out why he would be ordering all new imaging. Then she informed me since my follow up isn't until September 11, we still have plenty of time to get me back on the schedule to do the other scans if he still wants them.
Since I had already had to deal with utter incompetency, and was done WAY ahead of schedule, I went ahead and called my primary care doctor's office and talked to his nurse about my disagreement of his depression diagnosis. I also let her know I wasn't taking Wellbutrin. I read the potential side effects and I wasn't willing to chance "acting aggressive, being angry or violent" as that was exactly what happened last time I was put on mood altering drugs I shouldn't have been on. [Thankfully that doctor was willing to listen to me and immediately titrated me off of them and we found a different medication.] The nurse was not happy with me and wanted to know if I was having issue with the diagnosis or the medication. I told her I had an issue with both. She told me she would speak to the doctor and get back with me.
I got a call back from her at the end of the day yesterday, but I was at work, so I called her back this morning and talked to her. According to her, the doctor was unwilling to make any changes. He would discuss with me at my follow up appointment. My follow up appointment is 8 weeks away. I still haven't decided if it is worth keeping this doctor or saying the hell with it and finding someone who doesn't make me feel worthless.
So next week I'm supposed to hear back from the neurosurgeon's office on whether or not I have to take yet more time off of work to have yet another MRI that should have already been completed. And I have an appointment on Thursday with the pain doctor that I was sent to by the neurosurgeon. Who also wanted to see the new MRIs that don't exist.
So no, I'm not depressed. I'm frustrated. I'm irritated. And I'm really tired of being told I'm too young for my problems. Because my age doesn't seem to matter. It's still happening. There's no little man inside my back with a stopwatch waiting for me to mature to that magic age before degeneration and injury happens. It's already done. It's probably still happening. And if you're not sure, just hang out with me for awhile, you'll watch me drop all kinds of things when my left hand goes numb. Or watch me fidget because I can't sit or stand for periods of time without it becoming increasingly evident there is something really, really wrong inside of my spine. I'm tired of being told that my problem is all from anxiety, or that these problems can't be real because of my age.
I still do normal things every day. I go to work. I smile. I make my lunch, I make dinner. I clean up around the house. I do dishes and laundry. I have hobbies. Most of those activities hurt so fucking bad I want to punch something. And most people would never have a clue because I will still smile at you and say Good Morning as I walk by. I am not on any pain medication. None of the doctors I have seen have even asked if my pain is controlled. They haven't even asked if I have pain. But they are all too willing to throw other things at me. To be fair I didn't ask them for pain killers either. You really can't ask for them anymore. You do and you're pretty much immediately labeled a drug seeker. The local urgent cares here have signs plastered everywhere that they won't even treat you for pain if you're a chronic pain patient and they won't write scripts for anything beyond an anti-inflammatory or a very low dose muscle relaxer, and even then it won't be for more than a few days at most. And I do understand the whole fight against opioid dependency, and I'm not even going to get into that here. I don't even really want pain medication. I want the doctors and nurses at these places to quit being assholes. I want them to quit treating me and other patients like shit.
I just don't understand how every. single. step. of this has to be so damn difficult. And every one of the nurses I have dealt with at every one of these offices have seemed to hate their lives. Why do you continue to work there? Why do you still deal with patients? I worked with nurses every day for almost a decade. I know there are amazing, wonderful, nurturing nurses out there. So why do the nurses at these facilities suck so damn bad? Or did my friends just ruin other nurses for me? I have had to continually call all of the offices multiple times for things they have forgotten to handle, calls they didn't make, prescriptions they didn't fill, or I've had to send messages on their websites because their automated phone menus didn't work. And I have to keep going in for appointment after appointment, missing work again and again. Not to mention to filling out the same paperwork over and over. These places all have electronic medical records, and none of them want you to use the online version of the pre-registration. They all want the paper copies. Our healthcare system is a joke. And these are the reasons why I have so much anxiety when dealing with all of this. It's another job just trying to get anything taken care of.
If you've made it this far, thanks. I'd so much rather advocate for anyone else but me. I'm just in too much pain and I'm so tired. But I promised myself I'd see it through this time instead of giving up on it like I do every other time. Let's hope it pays off this time.
I had my first appointment with my new primary care physician last week. It didn't go super well. I thought parts of it went well, but I'm not a great judge of that, because of my whole new doctor anxiety thing. They checked me in, gave me the normal, tell us all about yourself form, and sent me in to have my vitals checked. I talked to the nurse, explained for the third time that the medications forever linked in my chart from my ER visit are the correct medications, wrong dosages. I explained I needed one of my medications refilled, I only have two days remaining. I even brought in the prescription bottle. I also explained why I had been in the ER and that yes, I had originally made this appointment to see the doctor to get a referral, but things got bad and I couldn't wait and now I was already under the care of a neurosurgeon.
So the nurse asks where I got the form that I'm filling out and I tell her they gave it to me downstairs. She informs me I need to finish filling it out because the doctor won't see me until it is complete, but that it's actually the wrong form. She doesn't want to make me fill out two, so she'll make it work, but he's not going to be happy. Then I finish it, take it out to her and she brings me a release form and asks me to list my old doctor and the neurosurgeon info on it so they can get my records. I do all of that.
After I give all of the information, I hear the doctor in the hall asking about the form I just filled out and the nurse explaining that they gave it to me at check in and she didn't think he would want a delay by having me fill out a new one. And he comes in the room. He starts asking me about my back and I explain all of it and he says fine, deal with neuro. Then he gets to the part about how I'm a smoker and goes on and on about how everyone knows smoking is bad for your heart and lungs but most people don't realize how bad it is for your spine. Yeah, doc, I get it. Smoking kills. He then sees Mom is deceased so he starts asking questions. I give him the whole spiel, but kinda quickly. Then he starts asking lots of medical history questions about mom and I start tearing up. Keep in mind this is 3 days after I was with my family helping go through a bunch of Mom's belongings. This is right after I finished telling this doctor my mom just passed away. He hands me tissues. And says, oh I'm sorry, she's recently deceased. I say yes. And I'm trying to get my bearings, because I'm crying in a doctor's office. I'm already not comfortable and now I'm overly emotional.
He starts asking me questions that sound an awful lot like a depression questionnaire. No, I'm not too sad to do things. Yes, I'm sad sometimes. My mom just died. Yes I'm under stress. But I'm back at work now and things are mostly normalizing except the back issues. No I'm not having troubles sleeping. I have obstructive sleep apnea and I faithfully use my CPAP and have no issues. I have fatigue because of my back. I'm not constantly sad, just at times. Then he asks if I want to quit smoking and I say, probably at some point. Then he was back at the form asking me questions based on my answers. Next thing I know he's telling me he is prescribing me Singulair for my allergies and Wellbutrin to help me quit smoking and help with my mood and I need to go for labwork and follow up with him. I tell him I don't think Wellbutrin is a good idea. I've been on antidepressants for off-label use before and I have had bad side effects. They make me mean and I really think it's a bad idea and he apparently doesn't seem to care. Honestly at that point, I don't think I had the fight in me to disagree or argue anymore.
I was a little shocked and honestly ashamed. Why couldn't I seem to speak up for myself? Why was this man so sure I needed to take this medication? Why would I have been capable of arguing for anyone else sitting in that patient seat but I'm incapable of speaking up when it's for me? So I decided maybe I needed to just process the information.
I left the doctor's office, went to work, went to the pharmacy to pick up my prescriptions. They had called in the new prescriptions, but not the one I actually needed. So the next day I called the office and had them call in my topamax, which I take to prevent migraines. I considered talking to them about the Wellbutrin, but I didn't. I couldn't. I also didn't actually take the medication. Because when I checked the paperwork they gave me when I left the doctor's office, to make sure they had noted I was to continue that medication, I happened to notice that the doctor had diagnosed me with depression with anxiety. And I was furious. How could you diagnose me with that when I already know the depression questionnaire and I know the answers I gave him? He didn't give me one of those papers to fill out and put in my chart. I didn't sign anything. He just made it up? I'll give him the anxiety. Anything to do with the medical field anymore gives me anxiety, but depression? Depression that would justify medicating me after less than 3 minutes of conversation and 5 tears? No, I'm sorry.
So I let it be for a little while because I knew my new MRI was coming up. And that had me filled with a different level of dread and anxiety. So I showed up yesterday morning for my MRI and filled out their questionnaire about my tattoos and any metal in my body and had I ever had contrast before. And when I turned it in and the radiologist noticed I had just had scans done last month, he called up to check and make sure the orders were right. The nurse apparently decided he should just scan my lumbar spine instead of redoing all of the imaging as ordered. So my 2.5 hour MRI that was supposed to be all new images of my brain, cervical, thoracic and lumbar spine? Nope. Just my lumbar. When the radiologist told me they were just doing my lumbar I questioned him three times, explaining in detail why there were orders for new imaging. Explaining what was found and that it wasn't detailed enough, but according to him it didn't matter, we were just doing the lumbar spine. Then he had the audacity to look at me and say "You're awfully young to have all of this happening to you." I said something along the lines of "Strangely enough my age doesn't seem to stop any of it from happening." or some shit like that.
As soon as I left the building I called them and spoke to the NURSE who changed the order for my MRI. Because according to her, my neurosurgeon is on vacation until Monday, so when the radiologist called for clarification, instead of telling him to do what was ordered, she took it upon herself to go off of his dictation to figure out why he would be ordering all new imaging. Then she informed me since my follow up isn't until September 11, we still have plenty of time to get me back on the schedule to do the other scans if he still wants them.
Since I had already had to deal with utter incompetency, and was done WAY ahead of schedule, I went ahead and called my primary care doctor's office and talked to his nurse about my disagreement of his depression diagnosis. I also let her know I wasn't taking Wellbutrin. I read the potential side effects and I wasn't willing to chance "acting aggressive, being angry or violent" as that was exactly what happened last time I was put on mood altering drugs I shouldn't have been on. [Thankfully that doctor was willing to listen to me and immediately titrated me off of them and we found a different medication.] The nurse was not happy with me and wanted to know if I was having issue with the diagnosis or the medication. I told her I had an issue with both. She told me she would speak to the doctor and get back with me.
I got a call back from her at the end of the day yesterday, but I was at work, so I called her back this morning and talked to her. According to her, the doctor was unwilling to make any changes. He would discuss with me at my follow up appointment. My follow up appointment is 8 weeks away. I still haven't decided if it is worth keeping this doctor or saying the hell with it and finding someone who doesn't make me feel worthless.
So next week I'm supposed to hear back from the neurosurgeon's office on whether or not I have to take yet more time off of work to have yet another MRI that should have already been completed. And I have an appointment on Thursday with the pain doctor that I was sent to by the neurosurgeon. Who also wanted to see the new MRIs that don't exist.
So no, I'm not depressed. I'm frustrated. I'm irritated. And I'm really tired of being told I'm too young for my problems. Because my age doesn't seem to matter. It's still happening. There's no little man inside my back with a stopwatch waiting for me to mature to that magic age before degeneration and injury happens. It's already done. It's probably still happening. And if you're not sure, just hang out with me for awhile, you'll watch me drop all kinds of things when my left hand goes numb. Or watch me fidget because I can't sit or stand for periods of time without it becoming increasingly evident there is something really, really wrong inside of my spine. I'm tired of being told that my problem is all from anxiety, or that these problems can't be real because of my age.
I still do normal things every day. I go to work. I smile. I make my lunch, I make dinner. I clean up around the house. I do dishes and laundry. I have hobbies. Most of those activities hurt so fucking bad I want to punch something. And most people would never have a clue because I will still smile at you and say Good Morning as I walk by. I am not on any pain medication. None of the doctors I have seen have even asked if my pain is controlled. They haven't even asked if I have pain. But they are all too willing to throw other things at me. To be fair I didn't ask them for pain killers either. You really can't ask for them anymore. You do and you're pretty much immediately labeled a drug seeker. The local urgent cares here have signs plastered everywhere that they won't even treat you for pain if you're a chronic pain patient and they won't write scripts for anything beyond an anti-inflammatory or a very low dose muscle relaxer, and even then it won't be for more than a few days at most. And I do understand the whole fight against opioid dependency, and I'm not even going to get into that here. I don't even really want pain medication. I want the doctors and nurses at these places to quit being assholes. I want them to quit treating me and other patients like shit.
I just don't understand how every. single. step. of this has to be so damn difficult. And every one of the nurses I have dealt with at every one of these offices have seemed to hate their lives. Why do you continue to work there? Why do you still deal with patients? I worked with nurses every day for almost a decade. I know there are amazing, wonderful, nurturing nurses out there. So why do the nurses at these facilities suck so damn bad? Or did my friends just ruin other nurses for me? I have had to continually call all of the offices multiple times for things they have forgotten to handle, calls they didn't make, prescriptions they didn't fill, or I've had to send messages on their websites because their automated phone menus didn't work. And I have to keep going in for appointment after appointment, missing work again and again. Not to mention to filling out the same paperwork over and over. These places all have electronic medical records, and none of them want you to use the online version of the pre-registration. They all want the paper copies. Our healthcare system is a joke. And these are the reasons why I have so much anxiety when dealing with all of this. It's another job just trying to get anything taken care of.
If you've made it this far, thanks. I'd so much rather advocate for anyone else but me. I'm just in too much pain and I'm so tired. But I promised myself I'd see it through this time instead of giving up on it like I do every other time. Let's hope it pays off this time.
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