Exhaustion. Sleeplessness. Wiped out. Recovery from the tumor removal has really gotten hard. Pain still comes and goes, always at the worst times. I hate to say it, but I really wish that I had more time to recover from the surgery. I only had 2 real weeks of recovery. I feel extremely rushed to return to work. As for right now, its taking a 1000% of everything I have to get up in the morning and get through a day of work. If anyone needs to have done what I had done, I would strongly recommend that you take at least 6 weeks off to bounce back. Again, hindsight setting in, but this has been an interesting experience with everything that has been going on. After the surgery, I was given Ambien. I am really on the fence about that stuff.
Does it work? Yes. Is it effective? Yes. Does it truly help? Not sure. I’ll be honest, when I take it, I get about 4 hours of sleep. Previously, it was just knocking me out for the entire night, however, it seems like my body has adjusted to the medication, and I am back to broken sleep. Waking up hourly. Just cannot get a full nights sleep. Again, I am dealing with a lot of crap. The main problem I have with Ambien, is that its a benzo. Since I have been put on pain management, its “frowned upon” if you are on them at the same time as pain management.
The strange mouth sensations that I have been feeling prior to the surgery are still lingering. I have sent a few messages to my ENT’s PA regarding it. The burning sensation comes and goes. The swelling and puffiness comes and goes. It’s just weird. I cannot tell if this is basically the effects of all the garbage empting out of my head, or an infection, or even perhaps just the CVID playing tricks. Hard to say. I did meet with my oral surgeon, he took a look, but cannot “see” anything. He mentioned Trigeminal Neuralgia. Which by the way is a bullshit thing to say. Hearing that kind of made me take a small step back and ask myself if this is the right person to continue my care. It’s been my experience that doctors are too quick to go the “neuralgia” route. For those who don’t know what that means, it means that its a problem they don’t want to deal with. They would rather just shove more pills in front of you to make you go away. As disappointing as that sounds, it is what it is. Next week I will be going to my other oral surgeon for a second opinion on 2 fronts, the issues with my face, and the upcoming implantology. My other oral surgeon was the one who pointed me towards my ENT. He is very understanding, and patient, where as my primary oral surgeon seems rushed, and doesn’t want to spend any more time on my case. The only problem with the other oral surgeon, is that he only accepts the dental side of my insurance, and not my medical. So I would have to come up with a lot of out-of-pocket to use him out of network. With that, that has a lot of risk as well, where if things don’t work implant-wise, I’ll be ending up shelling out more money. So its hard to say how this is all going to go down.
I also met with my pain management Dr. She has been an oddity throughout my treatment. Meeting her for the first time when my head was going to explode was awkward. I remember that day pretty well. Rewinding back to February 2019. Things were not going well for me. The struggle was real. Constantly eating Advil like there was no tomorrow. I felt like my mom. She always had a bottle of Advil with. She would constantly take it. Now its my turn. My mouth hurt. Period. The pulsing. The searing pain. I could go on describing the intimate detail of the pain… I met with my oral surgeon and begged him to figure this out. At this time I was also seeing my endodontist, as I was getting to “that point” of I have no idea what to do, nor have any idea who to turn to. I was starting to run out of options. My endodontist recommended pain management. Pain management doctors seem like a “different breed” of doctor. Yes, they are there to dispense pain medications to those that need it, however, I think the patients that they see day in, and day out must really wear them down. But again, that day. My wife and I got there early. Only ones in the waiting room. My previous appointment with here was really bad. She didn’t want to help. I was required to take a drug test, which I passed quite easily. So this next appointment started off the same way. She seemed pissed off I was even in the office. I think having the wife with however, made all the difference. My neck was killing me. The spasms I was getting, the severe amount of pain I was feeling from Fred (which at this time, was an unknown factor), started to paralyze me as the appointment continued. The throbbing was to the point of where my shoulder was starting to lock up again. My head being in a vice, it literally feels like its going to implode, and explode at the same time. My pain management Dr. decided based on my previous issues with my cervical spine found last year, that she would put me on pain management from that angle. Plus I also think my sheer honesty got her to pay attention that day.
The pain still comes and goes, but for the most part, where Fred was, its getting better. I think the surgery was beneficial in several ways. Taking away the face pain was probably the priority. Again, I am quite thankful that my ENT got the tumor out within 3 weeks of seeing the radiology report. Taking a look at the scans, and the radiology reports from both the MRI and the CT done early April, dude, I was in big trouble. Now I can truly understand why my ENT was very aggressive with getting Fred evicted.
I also met with my immunologist this week. I had sent him paperwork to be filled out from work so that my treatments can happen going forward without any “problems” at work. Unfortunately my infusions take time, which will require me to continually burn my benefit time at work throughout the year. As I came around the corner I just emotionally broke down. This has got to be the hardest thing I’ve had to deal with my entire life. He reassured me that I am on the right path to healing. Which has been the main concern that is always in the forefront of my thoughts. Am I going the right direction? Am I doing the right things? Those questions have yet to be answered. I guess with CVID complicating things silently my entire life, things have just a mystery up until this point. From an immunology perspective, things have been positive. Overall my body has been dealing well with the IVIg minus the day of infusion stuff (which really sucks). I am managing to keep the side effects to just fatigue. I never want to experience the first infusion side effects again, that was the fucking absolute worst. This upcoming week is my next infusion. I am looking forward to seeing where my IgG is sitting at this point, as my previous infusion, I was at 816. Since some time has passed since the surgery, I guess only time will tell, and the amount of times I get sick going forward will be the measure of success with treating my CVID.
Ultimately what all this comes down to is improved quality of life. Again, as far as I can remember, I’ve always been sick. I cannot remember the last time I went months without getting sick. I would love to go at least 6 months without having to go to the doctor, or the dentist, or insert specialty doctor here, or at most ER visits. ER’s in my opinion are not the place to go for anything. Again, those doctors are designed to just stabilize you. I am hopeful that I will be able to return to things I love doing in my spare time. The past year has been mostly confinement to either home, or work. That’s it. Outside of going to see a movie here, and there, I have been confined to those two places. I miss being outside. I miss being social. I miss life. It almost seems like I have been stuck in the penalty box, and I think I’ve done enough time. The acceptance of the disability of CVID has taken a very long time to happen, but again, there is nothing I can do to reverse it. There is nothing I can do to make it stop. All I can do, is just focus on the future, and knowing that I am not invincible. Again, it has taken over a year to find the right doctors to listen. 2018 taught me a very valuable lesson to not accept everything for face value. My goal for the end of 2019, is to focus on myself, and my improved quality of life. It’s time to take time for me.
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