A Few Updates

Ok, I will admit up front that this is a rather sloppy way to discuss or conclude some of these topics. I just scanned through a few of my latest posts and noticed huge gaps in information. I see that I've moved on from a few treatments or efforts I've made without discussing their outcomes. Please forgive the bullet points for now. I am too sick and too exhausted to put much effort into writing right now.

• Skin pain/inflammation & the anti-inflammatory diet-I did, in fact, participate in the full 3 days of eating nothing but turkey, rice, and pears. I chose jasmine and brown rice because they are both whole grain and significantly more substantial than many other kinds of rice. All in all, I can't say it helped much. I didn't notice any significant relief. Perhaps it helped to prevent further inflammation but that is not really something I can know for sure. I am glad I tried it, however, because it gave me an active role in fighting the inflammation. That's important because sometimes feeling powerless against illness feels as bad as the illness itself. Also, it was a valid option and certainly worth a try.

• Skin pain, widespread inflammation, and fluid retention have continued to be a problem-By the end of the second round of steroids (Medrol dose pack) the inflammation had returned. I spoke to Dr. Reifsnyder and he ordered that I stay on a lower dose of steroids for a while. He prescribed a large quantity of Methylprednisolone, the same drug and dose found in the Medrol dose pack. Methylprednisolone is made from prednisone and is much more powerful. Since the end of the second pack, I have stayed on anywhere from 2 to 4 tabs a day, 6 being the largest number of tabs in one day of the pack. The idea is that I should stay on the minimum number of tabs a day it takes to control the inflammation. On bad days, I should take an extra tab. So far, it's been nearly 2 weeks of varying numbers of tabs a day and the inflammation is controlled but not consistently. Even after a couple of days on 4 tabs, I was so swollen and inflammed that I looked 5 months pregnant and my legs felt tight and full of fluid. However, it's hard to know what was responsible for what at that time because shortly after, I was diagnosed with a kidney infection. More on that later. For the last 2 days, I've taken 4 tabs a day and the skin pain has been controlled pretty well. 

• The reason and plan for steroids-Dr. Reifsnyder explained it this way. The skin pain is a result of my immune system over-reacting to the recurrence of the viral infection Epstein-Barr. My immune system is sounding all alarms and calling in for way more back up than it needs. As a result, it is fighting the infection inefficiently, with resources going toward unnecessary and unproductive processes like inflammation of the skin and fluid retention. Steroids suppress your immune system and are not ideal for someone fighting an infection. They also mask signs of infections by preventing your body from having a fever and increasing your white count making it hard for doctors to interpret labs. Anyway, in my case, suppressing my immune system a little right now is a good thing because it will bring my immune response down to a reasonable level. That combined with anti-viral therapy with Acyclovir will, over time, make it more of a "fair fight" for my immune system. Now, I have been putting all of this pressure on myself to be on as little medicine as possible to control my symptoms. And, while that is a legitimate goal, I've realized it shouldn't be the focus at the moment. I've been trying to get by on the lowest dose of steroids possible. As a result, the inflammation hasn't been controlled all that well and it's causing my body to go into "fight or flight" mode causing my resting heart rate to jump to 135-far too high-and my pupils to dilate at random. When my pupils dilate like that, I get a debilitating headache. After a few days of that, I realized that it's more important today or this week to control the inflammation than to focus on getting down to a low dose of steroids. For now, I just need to use the resources I have to control the situation and take unnecessary pressure off of myself for now. Even if I end of up taking the steroids for as much as a few months, that it still considered a short course.

• The kidney infection- Last weekend, the fluid retention throughout my body, especially in my abdomen, became a problem. Even though I had taken extra steroids, I was extremely swollen and inflammed and I didn't know why. Then something called "flank" pain started on Saturday night. The week before, this same pain woke me up in the middle of the night when it came on suddenly and severely. It was pain that I've never experienced before. It was in my lower back, above my SI joints but below my rib cage, right about at my waist and just on one side. It was unlike any musculoskeletal pain I've ever had. I had also had an odd sort of headache that had been going on for 3 days. It was unlike the usual headaches I get and I kept saying I felt like I was probably coming down with something. I also had been having trouble emptying my bladder completely yet had no other symptoms that typically accompany a UTI like burning or urgency. Then I connected the dots and realized that something might be up with my kidneys. I researched the pain I was experiencing and learned that it is called flank pain. The description fit perfectly with what I was experiencing. So, I called Dr. Reifsnyder-but not before having a panic attack-and left him a voicemail. He returned the call pretty quickly. I explained the situation and he advised that I go to urgent care as soon as possible and have them run a urinalysis. The next morning, my mother took me to urgent care. My white count was elevated and my symptoms were consistent with a kidney infection. However, steroids can elevate your white count and make it hard for a doctor to tell if there is actually an infection present. They drew blood for a CBC and a urinalysis. This facility has an on site lab and the results come back almost immediately. With the labs and clinical presentation, they had to treat me for a suspected kidney infection. Again, it was their best guess given that the labs could be misleading. One thing that was not misleading was the fact that I had a fever, an obvious sign of infection. But, you're not really supposed to be able to get a fever on steroids so I suppose that's confusing too. They gave me 2 grams of IV Rocephin in the office and also prescribed a 10 day course of steroids. Then they scheduled a follow-up for 3 days later to repeat the labs and make sure the treatment is working. That was such a rough day, I was so exhausted I couldn't stand it. I was swollen everywhere and just at capacity. I felt like I might burst. I did look several months pregnant too; it was embarrassing. But, within 24 hours, I could pee normally again and the swelling went way down. In one day my abdomen went back down to normal. It was crazy how fast it happened! Anyway, I seemed to be responding to the antibiotics and the infection was going away.

• More problems with my kidneys?-Yes, that is the question now. Is there something else wrong my kidneys? I went back for my 3 day follow-up, they repeated the labs, and the doctor noted that I was recovering from the infection as expected. However, I could still feel mild flank pain and was still retaining fluid. My weight has gone up over 20 pounds in a matter of weeks but I can still wear the same sized clothing. How is that possible? At this weight in high school, I wore a size 10. Now, having swelled up suddenly to that same weight, I'm still wearing a size 4 or 6. That's weird! It doesn't make sense. That's partly how I know it's fluid not fat. It's everywhere, my doctor could even feel it in my arms. And even though the headache, pain and fever have improved, I'm still completely exhausted and retaining fluid. My doctor at urgent care said that severe fluid retention is a sign that something might be wrong with my liver or kidneys. He ordered liver and kidney function tests and asked to see me back in a week. There are a lot of things it could be, ranging from something simple like infection to life-threatening. However, no one is treating it like an emergency. They are taking it seriously and watching me closely, but no one suspects a major or life-threatening problem. I feel like things are being handled appropriately. I will know more next week. For now, all I can do is sleep. I can't get out of bed for anything. I'm just swollen and exhausted. I am alarmed at the thought that something might be wrong with my kidneys, of course, but not in a state of panic or anything. I am just really curious to know what the hell is going on. Kidneys? Really? No fair!