Trips to the doctor or lab over the last 6 months...

How many times have I been to the doctor, to a lab, or to a medical facility for a specialized procedure or test over the last 6 months you ask? Well, the answer is...

40!

That comes out to, what, once every 4 days? That sounds about right. To be honest, that feels like a conservative estimate. 

I found this out when I pulled up my claims summary for the last 6 months on my health insurance website. 

Just a funny/sad/interesting/startling/depressing/ fact. You're welcome!

Good News!

I know, it's hard to believe, isn't it? Well, I have managed, with the exception of today, to get the dose of Methylprednisolone down to 1 tab a day! I felt so relieved when I woke up yesterday without an increase in inflammation after reducing the dose. Of course, the lower the dose, the better. I also woke up yesterday to an increase in energy. Now that fluctuations in energy and inflammation are coinciding, I am beginning to trust my doctor's opinion on the role of steroids in managing this recurrence of the infection. 

As I may have explained in previous posts, my immune system isn't fighting the infection properly (big surprise!). It's not that my immune system isn't strong enough to fight it; it's that it's reacting too strongly. Basically, it is responding inefficiently to the virus and creating unproductive inflammation. So, instead of using all available resources to reduce the viral load, like it should be doing, my immune system is allocating much of its resources to producing unnecessary inflammation. In my case, it causes Hyperparesthesia, or exceptionally heightened sensitivity to touch. It's much like what happens when my immune system is fighting a bacterial infection, like Lyme, and my joints become incredibly inflammed. For me, and many other patients, when my immune system tries to fight this viral infection, it causes Hyperparesthesia. It can be excruciatingly painful. When it's bad, my skin hurts so badly that clothes, showering, and even lying in bed are all incredibly painful.

That is where steroids come in. My initial concern was that steroids would suppress my immune system. As my doctor explained, that is actually a good thing in this case. My immune system is actually over-reacting to the virus and essentially wasting resources on this unnecessary, unproductive inflammation. That is why he prescribed an anti-viral and steroids to be taken together for roughly 6-8 weeks. The combination will make it more of a fair fight for my immune system. That way, the anti-viral can do its job by reducing the viral load and the Methylprednisolone will manage the inflammatory response. After a while, the virus will be contained and the inflammatory response will go away so I won't need the steroids. 

All in all, it makes sense that I would experience fluctuations of the most classic mono symptom, fatigue, along with fluctuations in inflammation. It is more evidence that my infectious disease specialist is on the right track with this protocol. And, the fact that I'm now able to get by on only 1 tab a day and feel a significant increase in energy hopefully means that I am making progress and getting better! Fingers crossed.

Increased Heart Rate and Blood Pressure

Last month, my blood pressure was at an all time low. I was consistently getting the lowest readings of my life. My blood pressure has always been low, low enough to cause symptoms of lightheadedness and weakness. Even though it's always been low, it still fell within normal limits. On average, it was about 105/70. Now, I've been on beta-blockers for years now and in addition to keeping my heart rate normal, they also lowered my blood pressure. Starting about a month ago, though, the readings suddenly plummeted to 90/56. My cardiologist told me that if the systolic pressure (the top number) goes below 90 that I should call him. It never did go below 90 so I just kept his advice in mind and monitored it. 

Then the inflammation and fluid retention started and I was put on steroids shortly after. Since then, my heart rate has been consistently 120-130 and my blood pressure sky-rocketed above normal limits to 135/85. Those numbers are too high for anyone. Instead of taking my beta-blocker at bedtime like I have been doing for over 2 years now, I started taking it early in the day to bring my heart rate and blood pressure down. About an hour after I took it, my heart rate would come down to about 95 or 100 and my pressure to about 115/75. Although it was much better, a heart rate of 95 or 100 is still too high. The only other things I could to manage it were to drink lots of water, do relaxation exercises and avoid caffeine, all of which I was already doing. Since I was still in the middle of battling severe inflammation, it was hard to know what was causing the spike in my vitals. One theory is that it was my body's "fight or flight" response to the overwhelming inflammation. The other theory was that is was caused by the steroids themselves. It was really hard to sort it out while both the inflammation and the dose of Methylprednisolone were high. But, after about a week of the inflammation being consistently well-controlled, both my heart rate and blood pressure were still super high. 

For the record, the way I knew they were both high was because I had several doctor's appointments where they took my vitals and every time I went to the grocery store or pharmacy, I used the machines there. I also monitored my heart rate at home by checking it periodically throughout the day. 

Now that it has been nearly a week of well-controlled inflammation and a significantly lower dose of steroids, both my heart rate and blood pressure have come down. Yesterday at the pharmacy, the reading were 117/75 and 101. Now, a heart rate of 101 is still too high and is considered tachycardia, but that was a pure reading because I had not yet taken my beta-blocker. That means that now my heart rate on its own is the same as it was last week shortly after taking my beta-blocker. That's a huge improvement! Again, it's hard to sort out, but now I feel pretty certain that the high dose of steroids was causing the increase in both numbers. That is one of the side effects of Methylprednisolone, along with flushing, mood swings and increased perspiration, all of which I experienced. So, for all of these reasons, I am happy to be on a lower dose. Maybe before too long I won't need them at all. That would be wonderful!

Lowering the Dose of Methylprednisolone

Over the course of the last week, I have managed to decrease the dose of steroids (Methylprednisolone) significantly. Since the completion of the second Medrol dose pack-a 6 day regimen of Methylprednisolone that starts off at a very high dose of 6 tabs the first day then gradually decreases to 1 tab on the final day-my infectious disease specialist has kept me on Methylprednisolone at varying doses to control the severe Hyperparesthesia (skin pain and sensitivity) and swelling. At first 2 tabs a day was enough to keep the inflammation at bay. My doctor told me that it was ok to take extra tabs for a little while if the inflammation comes back or isn't managed by 2 tabs. For about a week, it took 4 tabs a day to manage it. During that week I was being treated for that kidney infection so it's possible that my body was just overwhelmed and needed some extra support. On one day during that week, I tried to take only 3 tabs one day. The next day I woke up to severe Hyperparesthesia again. This time, it mostly affected my back, neck and shoulders making it difficult to rest because the pressure of the pillows against my skin when I tried to lie down was too painful. So, I went back to 4 tabs for the rest for the rest of that week because it was clear that I was not able to get by on less at the time. 

However, since then I have been able to bring the dose from 4 tabs down to 2! I did it gradually, decreasing it by 1 tab at a time and giving it a few days to see if the new dose was enough to keep the inflammation down. Then I would decrease it by 1 more tab until I got down to 2 tabs. It's been 5 days on 2 tabs each day and the inflammation has been controlled pretty well. There were moments or even whole days here and there where I felt the inflammation but it was mild and didn't call for an increase in the dose. I feel more at ease mentally on a lower dose as well. Methylprednisolone is a powerful steroid; it's even stronger than Prednisone and the idea of being on it at all makes me uneasy. I was in a bit of a hurry to reduce the dose because 4 tabs a day just seemed excessive. Like I said, I feel more at ease about the whole thing now that I only need 2 tabs a day. I also like that my doctor gave me instructions and the the freedom to adjust the dose as needed.

Now here's the exciting part. Since the kidney infection has been treated and I've been stable on 2 tabs of Methylprednisolone a day for 5 days now, I'm thinking of trying only 1 tab today! Of course, this is just a trial run to see if it's possible to get by on a lower dose. If the inflammation returns, I may need to go back up to 2 tabs. Or, if I encounter some other major physical stress, 1 tab may not be enough and I may need to increase the dose temporarily again. No matter what, the fact that the inflammation is controlled well enough for me to try 1 tab is a good sign, I think. I hope that this dose is enough to manage it! So this morning, I only took 1 tab. I will see what happens and report back. 

More updates

I went back for a third and final visit for the kidney infection on Wednesday. The results from the labs:

• Urine culture:  Confirmed bacterial infection that is sensitive to Cipro. That means that the kidney infection is no longer suspected but confirmed. That also means that a 10 day course of Cipro should have resolved it. They are repeating the urinalysis one last time to make sure the entire infection has been treated. If not, I suppose I'll need another course of antibiotics. 

• Blood work:  Kidney and liver function tests were normal! That rules out something huge and life threatening and is a major relief! The labs also measured my TSH (Thyroid Stimulating Hormone) and found that I have an overactive thyroid.  I've had this test done several times and it has never come back anything but normal. The doctor ordered more blood work to investigate the thyroid thing in more detail. So, stay tuned.
  

So, those are the test results. Now, onto how I'm feeling. I'm still incredibly worn out and still taking steroids and still feel kidney/flank pain and am still retaining lots of fluid. The blood work ruled out a lot of possibilities but has left me without an answer about why I'm retaining so much fluid and have occasional flank pain. I'm going to have to investigate it further on my own and maybe in 6 weeks or 2 months a doctor will be able to look back, long after I've figured out roughly what was going on, and finally provide me with a diagnosis. That's the way it usually works. I mean, the kidney infection was pretty straight forward and handled very well by the doctors at urgent care. But, I'm still the one that figured it out and diagnosed myself long before they got my file. But, most diagnoses take forever and are incredibly frustrating. My guess is this fluid retention/kidney situation will follow suit. 

On a positive note, I came down on my dose of steroids a bit without problems! I have needed 4 tabs a day for about a week or so now and that's a very high dose. A few days ago, I tried 3 tabs and woke up extremely inflammed the next day. So, disappointed, I went back up to 4 for another few days. But, for the last 2 days, I've gotten by on only 3 tabs without that crazy inflammation rushing back! Any reduction in the dose is a good thing. Now that it's been a couple of days of stability on 3 tabs a day, I'm going to see how it goes on 2 and report back. 

On a not-so-positive note, my heart rate and blood pressure are out of control now. As of November 10th, my average blood pressure reading is 130/80. The highest I've seen it go is 135/85. I've always gotten low readings. For years, the readings were low enough to cause lightheadedness but not low enough to be dangerous. But, about 6 weeks ago, I started getting the lowest readings ever, like 90/56. I've been on beta-blockers for years, which lower your blood pressure, but my dose has never changed and my readings have always been about 110/70 with beta-blockers. Then all of the sudden, they started getting lower and lower until I finally got that 90/56 reading. My cardiologist said if the systolic pressure (the top number) gets any lower that I would need to call him. So, fast forward to present day and my readings are now high by anyone's standards. What's going on? Worse than that, my heart rate has been out of control, even on beta-blockers. Lately, I've started every day with a heart rate of 125-135. That's way too high. Anything over 100 is tachycardia. Even 110 would be acceptable, but not 135. It's been like this everyday. So, I take my beta-blocker earlier in the day and it comes down either to normal or to near-tachycardia for a few hours. It's not good. I need to call my doctor, check in, and see what's going on.

At first, I thought the increased heart rate and blood pressure were a response to the overwhelming inflammation, my body's fight or flight response. But even after a week or so of the inflammation being controlled fairly well, they're still too high. My best guess now is that the steroids are causing it. The fluid retention alone can increase your blood pressure and the steroids could be responsible for at least some of the fluid retention now. I'm assuming that the lower the dose of steroids, 2 tabs a day vs. 4, the better my readings will be. We'll see. I'll see what my doctor has to say about it. In the meantime, the only things I can do to try to control my heart rate are drink more water, avoid caffeine (of course!) and do breathing and relaxation exercises. Since I don't yet know if my beta-blocker should be adjusted temporarily, there's not much more I can do to keep my heart rate low. Oh, it's all so confusing. One problem causes another. Medication treats one problem only to cause another. It's all so messy. 

I've been taking 4 methylprednisolone tabs a day for 4 or 5 days now. This seems to be the dose at which the skin pain stays nearly gone. So after several days of very little inflammation, which has helped my heart rate calm down a bit, I thought I should try taking only 3 tabs yesterday. The result...I woke up to skin pain this morning. It's all over my back, neck and chest. It's not quite severe; I would say it's only moderate. But, that estimation is coming from a person on 60mg of morphine a day.

So I guess it's back to 4 tabs a day again. But 4 tabs is a very high dose. Why is it taking such a high dose to keep the inflammation down. This is so frustrating. To look at me, aside from the bags under my eyes that I conceal before anyone sees me and the fact that I mostly just sleep these days, you wouldn't know I was in so much pain. When I say inflammation, you would naturally assume redness and irritation. But there's no outward sign of it. No rash. Nothing. Just invisible, abject pain. 

After several days on 4 tabs, I had a steroid moment last night. After spending a lovely, relaxed afternoon with my friend and her 3 month old baby, suddenly my cheeks were flushed, I was starving, and my mood shifted drastically to sad and angry. I couldn't stop eating. I had an enormous appetite. I ate meals and snacks all evening that were twice the size of my normal. Nothing filled me up; nothing satisfied me. I was also in quite a bit of pain. I'm still experiencing flank pain every so often, sometimes with my regular SI and hip joint pain. The flank pain isn't made better with ice like the joint pain. In fact, ice stings and makes it worse. That's very unusual for me. Ice has been my pain lifeline for a long time now and it's weird to me that it would fail to help. But last night was just straight forward SI joint pain. I tried ice and rest but it soon became intolerable anyway. I ended up taking  a pain pill which gave quite a bit of much needed relief. God, it was a bad night though. All of that was happening at once. I managed what I could with medicine and food and ice and rest and relaxation and on and on. But it all went on for hours and consumed my evening. I know that the steroids were responsible for the flushing, appetite, and mood swing. Those are classic side effects. I've had no appetite lately. It's been days of avoiding meals and snacks, not craving anything, and bad stomach aches when I do eat. I don't know what's causing that quite yet though. So to suddenly have this enormous appetite was strange. 

So I suppose I will try 4 tabs a day for now. This skin pain is unacceptable. The fluid retention remains a mystery for now. It's still happening, still everywhere, still seems to happen regardless of other factors like inflammation or fatigue or salt intake. I'll see my doctor this week and get the results from the kidney and liver function tests. I just want to know, just want to rule things out, figure things out, and move on. 

It's 8:30am on a Saturday and I'm up for no reason. I don't know why I bother with the part about it being Saturday, I suppose to clarify the injustice of being awake early on a weekend. But, it's always the weekend for me these days. It must be the principle of the thing.

So here I am. I sat up and downed this morning's handful of pills then got right back in bed. Normally I would be racing for the kitchen, in as much as I can "race" anywhere, for food and coffee. But not this morning. This morning, and last night for that matter, I don't really have much of an appetite. Maybe I'm still sick. I'm on steroids, I should have an enormous appetite. I did have an enormous appetite last time I took such a high dose. Maybe it is yet to come. Maybe I'm adjusting to that particular side effect. Or, again, maybe I'm sick. Hard to say.

The funny and sad part about all of this came after the realization that I'm still in bed and not in the kitchen getting breakfast. My first thought, at 8:30am on a Saturday when most people are making plans to go out to eat or do yard work or go downtown or what have you, was, "Nice, I'll be awake for a long time today, and that means extra meals and snacks, and that means many opportunities to take all the different medications I need to take with food, nice and far apart from each other." Yeah, I know, it's depressing. I got excited for a minute at the thought that I'll have lots of time to take all my medicine. The worst part came next. I looked at the clock and thought, "Well, appetite or no appetite, I better get started. Don't waste this opportunity!" Yeah, I know, that's even more depressing. I'm lying here, not feeling very well, pressuring myself to "get started" and not waste time when there are precious meals to eat and pills to take. What a sad state of affairs!

Pain-Yesterday and Today

Last night I was in a whole lot of pain. My lower back, right side only, was very inflammed. There was mild flank pain but severe inflammation of everything else in the area, including muscles and joints. It was pretty bad. All I did was rest yesterday. I tried ice packs first but they didn't help much. The pain was too deep and widespread for the ice pack to cover it. So I took a pain pill, always my last resort, expecting relief. It didn't end up helping at all. The pain was just uncontrollable. I paid close attention to it, though, because the location made me feel suspicious that it might be connected to the kidney situation. It's hard to sort out, though, because it could've just been a joint pain flare. I decided to just watch it closely and see if it improves. It's always troubling when pain medicine doesn't off enough relief because there's no where else to go from there. I usually try NSAIDs, muscle relaxants, ice and rest before I take an instant-release morphine. If none of that helps or the pain isn't controlled well-enough to function through whatever it is I need to do, then I feel a pain pill is justified. I don't take them very often. When even a pain pill isn't enough, there's nothing else I can do medically. I can't take more than one and I can't overdo any of the other meds either. I can use relaxation and guided imagery to cope with the pain but that's about it. Last night, nothing helped. Even on all of that medicine,  all I could do was lie there in pain and hope it would go away soon.

It did. It was much better when I woke up this morning! I haven't had to take any extra medicine for pain or use any other coping mechanisms today. Perhaps it would've been wise to take that pain pill earlier on yesterday, before the pain got so bad. That's the thing about pain management. It's typically easier to keep pain levels at a constant than it is to bring down a high level of pain. It's smarter to take the medicine before the pain becomes a crisis so that it isn't up against such a high level. My problem is that I wait for it to get bad because that's the only way I can justify taking it. I use it sparingly and I intend to keep it that way. But, again, sometimes it's better to use it as a preemptive measure to keep pain at a more constant level. I'm still not good at knowing when to do that. I'm trying though. Anyway, the pain was much better by this morning. It's been very mild all day. I'm still too tired to get out of bed. I haven't left the house in days except to get some blood drawn. I have plans to hang out with my best friend tomorrow. She's going to make sure I get out of the house for a while. She really looks out for me. When we hang out, she takes such good care of me. She makes hanging out, getting out of the house and enjoying good distractions a lot easier. What would I do without her?

Also, I've been taking 4 methylprednisolone tabs for 4 days in a row now and the skin pain is nearly gone. I've also been retaining less fluid and that's a good sign. I was 5 lbs lighter today! I hope it's not a fluke but rather the beginning of this stuff finally getting better. I'm going to use the steroids for now, even though they're not ideal, because they will keep the inflammation low and keep my body from having fight or flight responses. Once the inflammation is controlled for a few days, I'll back the dose off a little. 

Ok, that's it for now. I've already been up for too long and am getting pretty sleepy. The sedatives are kicking in and that means it's time for bed!

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!

The Solution to the Skin Pain!

I called my new doctor, Dr. Reifsnyder, after nearly 2 weeks had gone by and skin pain hadn't improved. He recommended I stop my antibiotic, Cedax, for 3 days and see if that helps. If it doesn't, I would have to go in for an office visit. After 3 days off Cedax, the pain had not improved at all. So, I had to go to Lakeland for a visit one week before my scheduled follow-up appointment. I was just hoping that this visit would replace the scheduled follow-up and I would not find myself driving out to Lakeland twice. Luckily, my sister had her initial visit with him that week so I caught a ride with her on day 5 off of Cedax.

When I told the doctor about the pain and inflammation, he said he had seen this exact thing many times before. In his opinion, when the Cedax suppressed the bacterial Lyme infection, it gave the viral Epstein-Barr infection an opportunity to take over. He said the skin pain was a clear result of my immune system trying to fight  viral infection. This answer is in keeping with the answer I got long ago about my joint pain. I was told that it was a result of immune complexes settling in my joints as my immune system fought the bacterial Lyme infection. 

We didn't talk much about the fluid retention but I think I understand that better now too. If you think about how inflammation causes swelling in tissue you realize that it takes fluid in order for the tissue to swell in the first place. I had inflammation and swelling everywhere, especially in my abdomen and legs. My legs and ankles were so swollen that there was a little roll around each ankle. It looked ridiculous! I was so swollen and puffed up that none of my clothes fit. I didn't realize that at first because I had to wear dresses for the pain anyway. It wasn't until I tried on every single pair of jeans I owned, even the ones that were a size bigger, that I found out that none of them buttoned. It was so frustrating. I only had 2 dresses I could wear and then I was out of clothing options. But I didn't go out much while this was going on anyway.

Back to the appointment. Dr. Reifsnyder prescribed a Medrol dose pack, a powerful and short course of steroids, to knock out the inflammation. The idea was that the steroids would take care of the inflammation and swelling while my body adjusted to fighting the viral infection. It was not a solution to the problem. It was only meant to help me deal with those symptoms until the infection was under control, much like cold medicine when you have a cold. He also said to stop the Cedax and continue the anti viral medication, Acyclovir. He said to call his office in 10 days and let them know how I'm doing. Other than that, he just wanted to see me back in 3 weeks.

When we got back to Orlando, I was very tired and frustrated. I had been sitting in the car for 3 hours and in the waiting room for over 2 while my sister had her appointment and I was in so much pain. Plus, we took my mother's car and her suspension is such that I could feel every single bump and pothole on the road. That meant that every few minutes I was jostled around unless I held on tight to the handle above the door. The problem with that is that after a few minutes, I felt too weak and tired to hold onto that handle. So I was at the mercy of my mother's frantic driving and every bump in the road. The pain of sitting in a seat at all, the pain of my skin and muscles pressing into it, was bad enough without being jostled around. It was such a long day that I was very, very over it by the time we got in the car to go home. By the time we got home, I wasn't just exhausted and in pain, I was mad. I was very unpleasant to be around, I'm sure.

The next day I started the steroids. You have to start them in the morning so I had to wait until the next day. I was warned that they might make me feel wired and could make it hard to sleep. After the first 2 or 3 pills, I could already feel a difference. The inflammation and swelling was already going down. The pain began to improve. By the 2nd day, the pain was almost completely gone and I could see my ankles again! It was amazing. They really worked so well and so fast. I was so relieved to be able to get in bed or take a shower or wear a tank top without pain. The inflammation and swelling continued to get better and better over the next few days. That was, until the last day...

Ok, wait, before I get into that, I should say something about feeling wired. I didn't. Far, Far from it. For the first 3 days, I did nothing but sleep all day. Exhaustion wasn't the word for it, I was too wiped out to move. When I wasn't sleeping, I was just lying there with my eyes closed. I thought about how sad it is that that was me on steroids. What the hell would it have been like without them? Would I have slept for 24 hours again like that day months and months ago? I reasoned that it was probably an Epstein-Barr flare because steroids suppress your immune system and probably made it possible for the mono to flourish at first. It did, in fact, feel like when I had mono. I was just too tired to move or eat or anything. But then, all of the sudden, day 4 came and I was wired. I went on a cleaning frenzy. I did laundry and cleaned my bathroom and sorted through clutter that had been in my room for months. I even cleaned my car which I never do because it's really hard for me. I finally felt more like a person on steroids. Even still, I probably only ended up being capable of about a quarter of what normal can do. 

On the last day, the skin pain returned. It came on slowly and subtly. It wasn't as severe or expansive as it was before the steroids, but it was definitely there. It affected my neck and back and shoulders first then spread to my abdomen. Again, it wasn't as bad but it was troublesome. I took my final dose last night and went to sleep in a whole lot of pain. By last night, the pain was pretty bad and I went to sleep so worried that it would all come back when I stopped the steroids. When I woke up this morning, the pain was almost gone. I pressed all the spots that hurt before bed and it took a whole lot more pressure to cause pain. It doesn't hurt to lie in bed and my clothes aren't bothering me. So, ok, it looks like things are ok for now. I will just watch it and see what happens. Maybe there will be an adjustment period after I stop the steroids as my body gets used to being without them. I will try not to panic about the pain until the full 10 days have passed and I call Dr. Reifsnyder. The course of steroids lasted only 1 week and he told me to call after 10 days. There's probably some reason he picked 10 days so I will wait until then to draw any conclusions. But for now, things are ok and the steroids worked really well. Thank god. 

I woke up feeling rested this morning. My energy really improved a few days ago and has stayed that way. It's really nice to have enough energy in the mornings to make making coffee and breakfast possible, almost easy. Instead of this daunting task that has resulted in me making a little coffee station that I can reach from my bed. That way, I can just reach over and grab some coffee and a protein bar in the haze and pain and misery of the morning. Lately, though, mornings have not been miserable. I have been consistently waking up more rested and have noticeably more energy throughout the day.

The pain, however, is still here. I haven't taken Cedax in 2 days and today will be the 3rd day in a row without it. By tomorrow, or maybe Monday, I should feel a difference. If the pain and inflammation all over improves, then we'll know it's caused by Cedax. If it doesn't improve, then I will have to go in and see Dr. Reifsnyder for an evaluation. The pain is still all over, the same patches, same intensity. It does vary in intensity from day to day, but today it is no better than it's been on any day over the last 2 weeks. I've been managing it mostly by just avoiding the things that hurt like tight clothing, hugs, carrying my purse on my shoulder, putting my hands on my hips, etc. I've also been taking Aleve for the last several days and it definitely helps. 

Yesterday I had my monthly appointment with my pain specialist. I told her about this new pain and she said she's heard of other patients who start antibiotics and have a very similar reaction. She said it makes their skin hurt all over and usually only lasts a few weeks. I think she's right. I think Dr. Reifsnyder is right too, it's probably a reaction to that new antibiotic Cedax. The pain started about 4 or 5 days after I started Cedax. During my last appointment with her, we decided to decrease my extended-release Morphine because I hadn't been in all that much pain and didn't think I needed so much of it. That decision was also based on the assumption that it would probably be a while before I started treatment again. Then I got in to see Dr. Reifsnyder pretty quickly and started treatment right away. After that, the lower dose of Morphine wasn't enough. Then I ran out of instant-release Morphine for breakthrough pain. For the record, it's taken me 8 months to go through a bottle of 30 instant-release pain pills.

So, my pain specialist said she had no problem bringing my dose of extended-release Morphine up for now and wrote a new script for instant-release too. She said she wants to make me as comfortable as possible right now. She's said that before and has always followed through. She really has improved my quality of life and seems genuinely happy when she's able to make me comfortable. It also doesn't hurt that every time I see her she goes on about how pretty I am. I never get tired of that! Anyway, I'm glad I got a new script for instant-release pain pills because I was completely out and had to just hope I didn't need them in the meantime until my appointment yesterday. She also said that it would be ok to take them a little more often for a while until we get this pain and inflammation all over under control. All in all, it was a good appointment.

A Silly or Sad Thing I said...You Decide

I just found myself at the end of a long day and had just emerged from today's 3 hour nap when I said this pathetic thing. It was later in the evening and I had already had dinner but I still needed a snack before bed. I poured myself some Kashi cereal, this kind I'd never tried with these crunchy and sweet clusters, and was just about to eat it when I noticed that the clusters were too big. It wasn't so much abowl of cereal but a collection of about 10 of these clusters. So I started stabbing at them with my spoon to break them up, which by the way, didn't work very well at all. It only took a few moments but I still found myself saying, "Whoa, I am worn out. My arm is so tired now" by the time I was done. In fact, I felt so weak and worn out that I had to give up on my mission to break up these clusters and just eat the cereal as is.

Yes, you read that correctly. My cereal wore me out today. Is that incredibly silly or incredibly sad? I can't tell. I'm leaning toward sad. This is possibly a new low for me. 

The pain is still here. My body still hurts to touch. It still hurts to get dressed. It still hurts everywhere. In addition to this crazy inflammation, the joint pain was bad today. I had to take a pain pill to get through 2 quick errands, going to the pharmacy and target. I think I might have moved strangely or done something, aside from being on my feet a bit too long last night, because I experienced sudden, intense pain in my right hip joint when I got out of my car. It was so bad that I could barely walk. Each step I took felt like stepping on an open wound. It was prohibitive. Thank god I didn't have very far to go. When I sat down I took some Aleve and a cyclobenzaprine to make sure that didn't happen again. 

That type of hip joint pain started a couple of years ago. When it started, it was really only a problem when I took the first few steps after getting up. After those first few steps the joint would adjust to the change in position and the pain would get much better. But one day the pain didn't go away after those first few steps. From then on, I have been living with and managing it with medicine and physical therapy, etc. All that to say that today, each agonizing step I took from my car to the theater was like a flash back to when the pain was out of control and completely devastating. This time, it did get better and I was able to go about my day.

Now approaching the 2 week mark of this inflammation and pain, I decided to call my new doctor, Dr. Reifsnyder, to see what he thinks I should do. He suggested I stop the new antibiotic Cedax for 3 days to see if the pain goes away. It should. But if it doesn't, then I need to go in for an evaluation because it may be a new problem to address. This is day one without Cedax. Maybe I'll feel better in the morning.

The good news is that I definitely have more energy. Last night, for the first time in a long time, I had enough energy to go out to dinner and a movie and be alert and enjoy myself. It was wonderful. I started taking Acyclovir  2 days ago as part of the new protocol to suppress any active viral infections, especially Epstein-Barr. I don't know how quickly it's supposed to work. But the combination of getting better quality sleep so I've been waking up more rested and, maybe, the anti-viral is giving me much more energey. It's been nice to wake up in the morning at reasonable time and be relatively alert right away. These days, mornings are easier and getting my coffee, breakfast and pills has been a much less daunting. I am still taking good, long naps in the afternoons or early evenings. And I am going to sleep around 10pm or so most nights! That's huge. My sleep schedule has been off for years. It's amazing to sleep like a normal person. Well, you know, if you don't count all the pills it takes to knock me out, special pillows, and the positions I have to sleep in to try to keep the pain to a minimum. Even still, it's a big deal that the sleep thing is more on track.

Anti-Inflammatory Diet and Clothes That Don't Hurt

Yep, that about covers it. Last night I started the anti-inflammatory diet I mentioned in yesterday's post. To recap, the diet consists of 3 days of eating only turkey, rice and pears. The idea is that these foods are bland and will not make inflammation worse. It gives your body a little break. It was prescribed by my holistic doctor, an MD and a Naturopath, years ago to address inflammation in my joints. I didn't look too far into it, but I'm guessing that these foods were also chosen because they have some soothing properties. Anyway, I've only done this once or twice and it's really not so bad. I chose jasmine rice because it's delicious and whole grain. I may throw in some brown rice too. Ideally, the turkey should be the least processed and most chemical free you can find. I usually just get the best lunch meat at the deli counter. And that's it. For 3 days I will eat just that and hope it helps.

And, yes, the clothing situation has devolved into wearing light cotton dresses. Since I've been staying in, I'm just wearing pajama dresses. If I need to go somewhere, I suppose I will put on a real dress. But, jeans are out. Anything with a waist band of any kind is out. Tight tops or tanks with built in bras are out too. That pretty much leaves dresses. Dresses don't hurt.

God, this inflammation is really getting old. I hope it's just a Herx or a flare and not indicative of something else. I'm pretty sure it's just harmless, Lyme related inflammation. Again today, it's bad. It is very similar to yesterday, possibly a bit less severe. It finally occurred to me to take Aleve yesterday and it did help a little. I do know that NSAIDs are not ideal and shouldn't be taken often but I think this situation calls for them.

I am just going to lay low because overdoing it is another connection I've made to increased inflammation. It may be a coincidence but since the Sunday before last there have been 2 extremely bad days. The first day, that Sunday before last, of this inflammation followed an evening out for a bachelorette party. The party started at 7:30pm and I spent the whole day baking cupcakes just for the bride-to-be. Like I said in a previous post, I didn't drink or push myself too hard. But, that was the first time I had gone out in a while and it did involve a good amount of walking in heels. That evening followed weeks of being in bed most days and I suppose it's possible that I overdid it. The other extremely bad day was yesterday. I spent most of Saturday out shopping, going to dinner and seeing a late movie. I was on my feet for hours shopping. I didn't nap that day and was so worn out by the end. Then, just like the Sunday before, I woke up on Sunday in extreme pain. Is it a coincidence or a connection?

Everything Hurts More...Again

Dammit. The inflammation was starting to go down but today it is back with a vengeance. It has been exactly one week of this particular pain, this feeling bruised everywhere. Another way to think about it is the skin over most of my body feels as sore as women's breasts feel when they have PMS. Except for me, it's everywhere. I feel like I am right back where I was a week ago, the first day this started.

To give you an idea of how this particular pain is impacting me on this particular day, I just took a shower that caused all kinds of pain. For example, my neck and shoulders hurt so badly to touch that the little loofah puff thing I use in the shower caused significant pain as it lightly brushed over that area. Now, instead of the inflammation in my abdomen steadily going down and only affecting my left side and rib cage, it's everywhere just like last Sunday. I had to choose loose fitting clothes today because anything else would hurt too much. So I chose a very light, soft cotton skirt and a tank top. Only, the tank top couldn't have a built in bra or be too tight because it would hurt too much to put on. And the list goes on and on.

I'm trying to think of some more possible causes of this pain or at least figure out why it is worse now after it seemed to be getting better. One possible reason is that I might have overdone it yesterday. I spent the entire second half of the day yesterday out shopping, going out to dinner and seeing a late movie. Even though I had lots of help shopping and brought along all the usual little supportive pieces of the puzzle like ice packs, my disabled parking placard, water and some extra medicine, I was still on my feet for a long time. It was fun but very tiring. After the movie, I got into the passenger side of my own car, put the seat all the way down and fell asleep as someone else drove me home. I did far more in one day than I did all week long. I woke up rested enough to do something other than lie in bed all day. But, did I do too much too soon?

Another possible cause of this increased inflammation could be sugar. I am very conscious of my sugar and simple carbohydrate intake for many reasons. I am hypoglycemic, have Lyme disease and am on long term courses of antibiotics. Each of those conditions prohibits excessive amounts of sugar. In fact, some protocols prohibit sugar altogether. Whichever way you look at it, sugar is a bad idea. If I'm not careful, excessive amounts of sugar while on antibiotics could cause yeast overgrowth. And, just like too much alcohol, too much sugar can either cause a Lyme flare or make one worse. But, I love it intensely and still feel like cutting back is the most challenging part of treatment for me. I have been eating excessive amounts of sugar for about 2 weeks or so. I won't even define excessive in this case because it is too embarrassing. I'm not kidding, it was way too much, for anyone. As a result, I've put on a couple of pounds that will go away just as fast as they came once I stop. Anyway, sugar could be an important part of this puzzle. It might be wise to go on an anti-inflammatory diet again. Dr. kalidas ordered an anti-inflammatory diet once when my joint pain was out of control. The diet dictates that you eat nothing but turkey, rice and pears for 3 days. I think I'll try that again. It certainly can't hurt.

Surprisingly, aside from the ridiculous pain, I don't feel too terrible today. I don't feel quite as wiped out as I expected to after all that activity yesterday. I mean, it's still early and who knows when another 6 hour nap might strike. We'll see.

Feeling a Bit Better

So, I have been in varying degrees of weird and new pain for nearly a week now. My whole body is inflamed and hurts to touch. Throughout the days where the pain went from severe to moderate then back to severe and then back to moderate, my torso was the location of most of the pain. As I have written day after day lately, my rib cage, stomach, sides, back, lower abdomen and chest have hurt to touch. Now, instead of pain from the slightest bit of pressure, I can actually touch those parts of my body without cringing. The pain is not gone, not even close, but it's far more reasonable today. Today it seems to take much more significant pressure to cause pain. Now, when I say significant pressure, I mean like when I tried to pull a tight tank top on or carry my heavy purse on my shoulder. Anyway, things are getting better.

A quick side note here about a weird product of this inflammation. I have been, I don't know how else to say this, but kind of puffed up. I know, it sounds ridiculous but it's true. My stomach and even up toward my rib cage has been a little swollen all week. I can see a noticeable difference in the way I look in my clothes. I've looked like I have a belly that sticks out a bit. Today I looked in the mirror and everything looked like it was going back to normal. So weird though. I think it'll continue to go down as the inflammation goes away completely. But still, it was just silly looking.

I spent the entire half of the day yesterday sleeping. Not resting, sleeping. I guess my energy did not pick up as the day went on after all. I napped from 3:30-7:30pm then went to bed around 9:30pm. I didn't wake up until 9:30 this morning! I suppose you can't argue with the fact that I was truly wiped out. The entire second half of the day was dedicated entirely to sleeping. As a result, I woke up feeling pretty rested today. I mean, come on, it would be a little ridiculous if I hadn't. 

Everything Still Hurts

Yes, everything does, in fact, still hurt. But the good news is that it definitely hurts less! Let's see, my entire body still hurts to touch. However, the inflammation is continuing to go down and so is the extreme tenderness. It still really hurts to touch just about anywhere on my abdomen and my back, neck and shoulders. But things are returning to normal. For example, I was able to carry my purse on my shoulder last night! I can now fold my arms, put my hands on my hips and shower with less pain. But, getting dressed was painful as I pulled a tight tank top over my head and down my torso. The pressure of the fabric as I pulled it over my rib cage and stomach made me cringe. I'm also able to wear jeans, although the pressure of the button is still painful. At least the pain of pillows pressing into my skin has improved so that I can rest more easily. 

Yesterday I did a whole bunch of stuff. After days and days of not being able to get out of bed, I got up and washed my hair, did 2 loads of laundry, and made some important phone calls. I also did some very, very light cleaning and straightening up in my room. I was even able to blow dry my hair! I didn't nap at all yesterday and felt very worn out by the end of the day. I slept a full 12 hours last night, as usual, but woke up feeling pretty tired still. Did I overdo it yesterday? I hope not. I hope I'll get some of my energy back as the day goes on. 

Another symptom popped up a few days ago that is finally bad enough for me to address. I've been experiencing acid reflux again. It's been a huge problem on and off since I had my gallbladder removed last year. A common problem after gallbladder removal is the development of GERD. I have all the classic elements of GERD that I control mostly with diet. I have taken courses of Prilosec on and off over the last year with great success. Prilosec makes it go away completely. It really is a wonderful product. But, like I said, I can control it well with dietary adjustments. 

For the occasions when I really want something that I know will cause a reflux attack like anything with red sauce or coffee on an empty stomach, I take Prelief. 

Prelief neutralizes the acid in food and keeps it from causing problems. You can find it just about anywhere, Publix, Target, drugstores, etc. It costs about $8. I keep a few tablets with me at all times just in case. It really does help a lot. 

So, acid reflux problems are back and I'm not sure why. My best guess is that the new antibiotic Cedax is the problem. I don't think it has much to do with Cedax speciifically. I think any antibiotic is going to aggravate GERD. This time it's bad enough to make me start another course of Prilosec. I will just make sure to talk my doctor about it at the next follow-up and see what he has to say about it.

Other than that, I feel well enough to venture out today. I'm still really wiped out but I think I can manage some errands. That's it for now.

Support: An Ex and a Piece of Art

Today I got a package in the mail from an address that looked vaguely familiar. The return address had no name and I was struggling to figure out who might have sent it. My first clue was the package itself. It was a photo mailer specifically for the purpose of mailing photographs. Then it hit me, it was from an ex boyfriend who returned to Florida a year or so ago and was living in the same house he lived in while we were dating. He is an artist, a photographer, I dated about 4 years ago. We ended things on bad terms. He told me that he did not want to be with a sick person. We have not kept in touch but my bitterness and anger have dissolved since then. 

Despite the way the relationship ended, I continued to love his artwork. In fact, I have 3 of his framed pieces hanging on my walls right now. They've been up for years and I absolutely adore them. I have always been able to separate in my head, the ex from the artist. He is a brilliant artist and I do hope that he finds the success he deserves. 2 of the pieces that are hanging on my wall are easily my most prized possessions. One of his photographs that I am lucky enough to own is still one of my most favorite photographs of all time. 

I feel the need to provide this back story because the significance of the package he mailed me would be lost without it. When I opened the package, I found a letter, a diagram and a stack of photographs. The letter reads:

"Dear Amanda, 

I heard about your state of health. I know you might find this hard to believe but I do care, worry, and hope for a speedy recovery. I do not mean to disturb or disrupt your life, but I made this piece with you in mind to keep you in a positive mood. I cannot even begin to understand or feel what you are going through.

This piece shows the mundane that exists in the world that is happening outside your window but at the same time it has a beauty that is unique. You can hang it anyway you like but I made a diagram of the order in which I think it looks best. I know that you might view this work differently so understand that you can personalize it.

You are not forgotten in my mind and I do wish for you a very positive outcome in every aspect of your life. This comes from my heart."

After I read the letter, I picked up the diagram and the stack of photographs. On the back of each photograph is a number that corresponds to the diagram. I cleared off my bed and began arranging them according to the diagram. It was actually fun and exciting to build this and see what it would become. There were 21 photographs that were arranged in about 6 or 7 rows. The photographs were of all sorts of things like storm clouds, flowers, wall paper, cats, a stop sign, a foggy, rain streaked window and a set of keys. When I was finished putting this puzzle together, I stepped back to take it all in.

I was overwhelmed. Here is a gift that is meant to help me see and feel connected to the world I was currently missing out on. Here is effort and warmth and concern from such a surprising source. Here was a piece of art from one of my most favorite artists that was made with me in mind. Here is an enormous get well soon from someone who couldn't handle my illness once upon a time. It was beautiful. I love every bit of it, the letter, the diagram, the giant puzzle of photographs. I love the idea of someone finding a way to help me experience the world until I get well and can experience it for myself. This is a kind of support that came out of nowhere. I feel so grateful for it.

Support: Friends and Family

Support. This post marks the first of many on the subject of support. I do not mean support from medications or medical equipment or lifestyle adjustments or physical therapy. I mean the support we need from other human beings who care about us. I know that many of you are struggling with this issue. I know this because that struggle is inherent in the process of adapting to life as a chronically ill person. I have found that some people cannot handle illness at all. Others struggle with the urge to fix it and make everything better when we, the sick people, know that that is so rarely an option. In fact, the pursuit of a cure will drive some people, significant others in particular, to utter madness until they come to terms with the fact that chronic means forever. Still others struggle with being at an absolute loss for how to be supportive. 

I am very, very lucky. I have an incredibly supportive family. I have a sister, my best friend and most favorite person, who is also dealing with a chronic illness and therefore understands my situation inside and out. I also have a mother who is by far one of the strongest and most giving people on this earth. She understands parts of my struggle because she suffered through a back injury that resulted in spinal surgery and a very long, painful recovery. During the months and years leading up to my diagnosis, my mother struggled with feelings of helplessness. She had to stand by and watch as her daughter deteriorated before her eyes and there was nothing she could do about it. After the diagnosis, she had clearly defined roles. She became a caregiver and my financial backer. She paid for all the expensive tests and treatments I needed. She also provided food, clothing and shelter to a daughter that should be out in the world like every other 20-something making it on her own. Then she saw me struggle through devastating pain. She watched me decline further and further into total disability. However, she still had those clearly defined roles to give her some guidance and control in such an impossible situation. Our relationship went from being very strained and tense to open and relaxed as we both settled into our newest roles of caregiver and the very, very ill. Now that she is the one who provides the most crucial help I need and I have let go of most of my pride and let her, our relationship has really improved. Now we are sometimes friends, sometimes mother and daughter, and sometimes caregiver and the infirm. 

I am also lucky to have such supportive friends. Not a single one of them has ever expressed exasperation or frustration with my illness. Each one offers their own unique support. My best friend, Alex, offers every kind of support there is. She will bring me coffee and watch movies with me if I cannot leave my house or am having a particularly tough time. She will talk on the phone for as long as it takes to work through an issue. She will check on me via text or email regularly. When we hang out, she gets up to get our order of coffee or lunch and brings it to the table for me or holds doors or helps me carry things. She will tell me she loves me or misses me. She is there for me all the time, every time, no matter what. She will distract me or help me focus my attention on the problem. She does whatever I need. Sometimes she knows what I need better than I do. When she doesn't know, she asks. I love her and feel so very lucky to have her. 

My other best girlfriend, Betsy, offers her own unique support. We are not in the habit of seeing each other very often. It comes in waves of talking or texting then weeks will go by before we hear from each other again. She knows what a private person I am and how daunting a task it can be to keep in touch with everyone on a regular basis. So, she gives me space so as not to overwhelm me and I appreciate it. When we see each other, we have so much fun. We laugh the whole time. But, we also talk seriously and she listens to me talk about whatever is troubling me. When we hang out, she cools down the car for me, drops me at the entrance of wherever we're going, holds doors and generally treats me like her girlfriend. She has a knack for anticipating my limitations and needs, sometimes well before I do. She is incredibly silly and the most verbally affectionate person I know. She achieves a rare balance of showing me she loves me and thinks the world of me but can give me as much space as I need. She is also one of the only people who can bring out my sillier side. I love her very much and need her particular kind of support. 

Then there is Josh. He's been a good friend of mine for a few years now and also my sister's boyfriend for at least half of that time. He is a person who never, ever thinks twice about getting up to get something I need or getting to a show early to make sure he can grab a seat for me or carrying things for me. He is always one step ahead of me and can quickly come up with ways to make just about anything easier. He sees all these things he does as a given, in part because they are so easy for him and make such a difference for me. Back before the diagnosis when the pain was out of control and I was struggling to work and go to school, he would sit and read my text books to me while I was lying in bed on ice packs. He would bring me dinner if I couldn't get out of bed and lend me 10 or 15 DVDs at a time to keep me occupied. He took on the role of caregiver from the start and has continued though that role has evolved significantly since then. 

Then there is my friend Dan who lives out in L.A., although we met while he was still living in Florida. We only started to really get to know each other well within the last year. He is one of the funniest, most clever people I know. He manages to makes me laugh no matter what I am going through, no matter how devastating it might be. Our friendship has developed over the phone. I have spent more hours on the phone with him than anyone else in my life, ever. And yet somehow, the time just flies by. He has become very important to me because our friendship has evolved from one of jokes and one-upmanship to one where I can talk to him about anything and he will worry with me through any problem. He shows so much concern for me and waits with me to see if things will improve. We talk all the time now. He has become one of the first people I want to tell any news to, good or bad. 

There are others, other friends who play smaller but incredibly important parts. Each friend brings something different to the table, each one offers their own unique kind of support. 

See what I mean? Lucky.

Tips: Portable Foot Rest

Sitting is very, very painful for me. I have severe pain in my SI (low back) and hip joints. Sitting for too long puts pressure on my SI joints and causes serious pain. For that reason, if I am going to be sitting for a while like at the movies or a meeting, I bring a small pillow and an ice pack for my lower back. Unfortunately, I also have severe nerve pain throughout my body, the worst of which is from sciatica. The nerve pain that runs from my lower back down my legs is easily aggravated by sitting for pretty much any length of time. The edge of the seat of most chairs presses into the back of my legs and causes severe pain. 

I've been attempting to address or work around this particular problem for a while now. When I was still working, I finally got the idea to put a couple of phone books on the floor under my desk to use as a foot rest. That worked well enough but only when I was sitting at my desk. Lugging around phone or text books to meetings and movies was not realistic. After much consideration, it seemed as though I needed a foot rest that met the following criteria:

• It must be portable. That means that it must be light enough for me to carry around. I had already started cutting down on the number and weight of items in my purse because carrying around a heavy bag all day was very painful. 
• It must be small enough to carry around. Ideally, it would fit into a medium sized bag so I could bring it to the movies with me. 
• It must be inexpensive. I mean, it's not as though there is this huge market out there for foot rests for people with my particular kind of nerve pain and limitations. But, the foot rests you can buy from some office supply stores for your desk at work could cost over a hundred dollars. 

So, with all that in mind, I started thinking about options. Obviously, this was not a case of finding an existing foot rest that met all these criteria online or something. I knew I had to get creative. It seemed like some kind of thick foam would work because it would be sturdy enough but, more importantly, light. Then it hit me...a yoga brick!

So there you have it, my creative solution to this foot rest issue. I went right out and bought one. You can get them just about anywhere. I got mine from Target for about $10. You can also get them at sporting good stores; I've even seen them sold alongside books about yoga at bookstores. I purchased a pink yoga brick and have relied on it for close to a year now. It meets the criteria. It is light, small and cheap. I bring it with me to seated concerts, movies, meetings, long dinners, doctors appointments and even my own dining room for long family dinners. It has changed everything. It's the perfect height for a foot rest and small enough to almost go without notice, especially at the movies. Because it sits on the floor, I am always worried about germs from touching it. For that reason, I keep it in a plastic bag. That way I can put it in the bottom of a large purse without getting everything else dirty. It stays in my trunk at all times so that I always have it when I'm out if I need it. I also keep a tote bag in my trunk that has a small pillow in it. Every time I go out to a movie, I put the yoga brick in that tote bag and bring the whole thing in with me. It has become my routine. For the record, I also sanitize my hands every time I have to touch the brick because god only knows that might be on it. 

Now that I have it, it's hard to imagine life without it. It seems like such an obvious solution now. But, trust me, it took quite a bit of creativity to come up with it. I actually feel pretty clever and accomplished for having found this solution. I've gotten quite a few comments on it. Some people always expect to see me with it. Some people, healthy people, have remarked on what a great idea it is and how they'd also like to have one for when they go to the movies. All that to say that it has been a big hit across the board. 

If you are in pain and looking for ways to make sitting more comfortable, consider picking up a yoga brick. Trust me, it will change your life!

Everything Hurts a Little Less

Yes, it's true, everything does, in fact, hurt less today! I still feel inflammation all over but it definitely seems to have gone down. I still feel bruised all over but that deep muscle pain is nearly gone. What a relief. I've been in extreme pain for the better part of a week now. When I woke up this morning, after that 18 hours of rest I described in my previous post, I felt reasonably rested and in significantly less pain. There are still parts of my body that are very tender and sensitive to the touch. Resting is still painful because my neck and shoulders feel badly bruised and hurt when the pillows press into them. My abdomen also still hurts to touch just about anywhere but is significantly less sensitive. So, it looks like things are on their way back to normal. I might be able wear jeans, fold my arms, put my hands on my hips and maybe even carry my purse on my shoulder. We'll see.

It does seem as though I will finally be able to do some of the things I've had to put off this week like washing my hair, laundry and paperwork. Also, yesterday the weather finally changed and cooled off. It was beautiful out and is again today. I cannot actually be outside in the sun because I am on antibiotics but I will find a way to enjoy this nice break from the heat.

Everything Hurts: Part IV

Yesterday, Wednesday, September 30, was day four of this "Everything Hurts" pain. My best guess is still that the pain has been caused by severe inflammation from a Herx reaction after starting the new antibiotic Cedax. Finally, I started to notice improvement yesterday. For many days, the majority of the pain has been from even the slightest pressure on any part of my body with patches of even more heightened sensitivity scattered all over. Yesterday, however, deep muscle pain began causing equal pain in addition to the bizarre sensitivity. 

Actually, the deep muscle pain started late the day before yesterday, or on day three. My neck, shoulders, and upper back ached badly. My neck was so sore that I couldn't turn my head to check my blindspot in the car. The deep pain was especially bad when I was lying in bed. If I tried to lie on my back, the pressure of lying back against the pillows hurt terribly. After that, the deep aching in my neck and shoulders built as everything settled into place. So I tried lying on my side instead and, again, my neck and shoulders and back ached so badly that I had to take a pain pill to get to sleep. Taking instant release pain pills happens very rarely at home. I usually only really need them if I'm away from home and don't have access to my ice packs and bed. That evening, however, I knew the pain was too intense to have a shot at sleeping. 

Back to Part IV, day four. The pain was no longer isolated to those bizarre patches of invisible bruises all over my body; it had begun to affect the deep muscles of my neck, shoulder, and back. The tenderness all over did begin to improve and gave me back a few routine functions. For example, as of yesterday, I could fold my arms and let them touch and rest against my body. I could also tie the string on my pajama bottoms without much pain. And, finally, although still sore, my breasts and upper chest were no longer the source of some of the worst of the pain. It seemed as though that invisible bruising had begun to heal. I was still struggling with that deep muscle pain which was still making it very hard to rest comfortably. And, unfortunately, resting was just about the only thing I was doing yesterday. 

By 9am this morning, I had spent about 18 of the previous 20 hours sleeping. Yesterday I went to take a nap around 2pm or so and did not wake up until 8:45pm! When I got up, amazed at the marathon nap I had just emerged from, I had dinner and caught up with my mom for a little while. Then I treated the evening like every other one as of late but starting to get ready for bed in the 9 o'clock hour. I took some pills then a few more later on according to my pill schedule and got ready for bed, again, I suppose. I figured that after such a long nap that I wouldn't be able to get to sleep until very late. That was not the case. I was asleep by about 10pm and did not wake up until 9am this morning. It was splendid. I would always rather sleep through pain or whatever other misery has come my way than be awake and medicated for it. 

That example of my marathon nap followed by a marathon night's sleep illustrates my week rather well. I really have been so extremely exhausted that when I'm not in bed actually sleeping, I am in bed resting with my eyes closed. With the exception of going out to see a movie on Sunday, day one of this crazy pain, I have not left the house all week. Well, that's not exactly true, I did go to an appointment on Tuesday but came right home and napped afterwards. I have been in bed all day, everyday too exhausted to do anything, including shower. I've also been very scared of showering because the thought of water falling on my skin makes me cringe right now. Since things are beginning to improve, I believe showering will be fine now. But, I really have been home and in bed for most of the last four days with exhaustion as severe as the pain. It makes sense to me that the two are related and a part of the Herx reaction that seems to be on its way out. It also makes sense, however, that such intense, ongoing pain would eventually wear me out. As far as I can tell, it's a combination of the two. 

Whatever it is, it seems to be getting better, finally.

Everything Hurts: Parts II & III

Sunday, September 27th was day one of the "Everything Hurts" pain. Literally, as you can see by the post below, everything did hurt. Well, Monday and Tuesday were rounds two and three of that same pain. 

On Monday, the pain was identical to that of Sunday. I guess I expected it to hang around for a day, maybe. But no, it decided to stay longer. Monday was full of all of the same bizarre patches of sensitivity all over my body that hurt to touch even lightly. I described below a few of the startling limitations this pain caused. Well, after I wrote and posted that, I got dressed and went out to a movie with my family. I chose a pair of dark jeans that have a bit of stretch to them, thinking they would be more comfortable than other more confining choices. I was wrong. My lower abdomen, that space just below the belly button, hurt so much that the button on my jeans created extremely painful pressure. 20 minutes into the movie, I had to unbutton my jeans to get some relief. I also took an instant release morphine, 2 Aleve, cyclobenzaprine and Lyrica to try to manage the pain while I was out. Even still, I had to get up and rub Biofreeze over my SI and hip joints so I could make it through the movie. I literally did everything I could do to manage the pain that day. Well, Monday was exactly the same except I didn't go anywhere or do anything. I stayed in bed all day, taking a very long nap in the afternoon and just resting with my eyes closed for the rest of the evening. I was vaguely aware of a few calls and messages I received that evening, but kept drifting in and out of what felt like a light coma. 

By yesterday, Tuesday, September 29, the inflammation and pain seemed to have gone down a bit. My skin still hurt to touch all over, especially in those areas like my lower abdomen, left side, SI joints, rib cage, chest, thighs, etc. By then I had also noticed how very badly my shoulders hurt, so much so that I could not wear my purse on my shoulder because the pressure was simply too much. So, I carried it in my hand instead. But yesterday, while the sensitivity of my skin had decreased a bit-as evidenced by the fact that I could fold my arms and let them rest against my body again-this deep muscle pain in my neck, shoulders, and upper back became incredibly intense. It felt like I slept in a strange position so that moving my head from side to side hurt pretty badly. And when I went to lie to down to nap at 2pm and then again at 6pm, getting into a comfortable position was nearly impossible. Add to the fact that my entire body felt badly bruised, my muscles ached as I attempted to settle into any position in bed. It was awful. Every time I lifted myself out of bed or lowered myself down into it, I actually cringed and said ouch out loud. It was bad.

Again, I spent the entire day napping and resting in bed. The only differences between yesterday and Monday was that yesterday I had to leave the house for an appointment with my psychologist and I had to take a pain pill to get enough relief to go to sleep. Actually, the latter set yesterday apart from most days. I very rarely need an instant release pain pill to manage pain at home or in bed. Usually just resting or using ice packs is enough. But last night I just couldn't stand it anymore. The pain in my neck, shoulders and back was so intense that I knew I wouldn't be able to sleep. It almost felt like my bones were settling or rubbing against each other when I got into bed. Just like the pain that made my whole body hurt to touch, I was confused by the source and intensity of this deep muscle pain. 

Everything Hurts

I went out last night for the first time in a very long time. I also wore very high heels for the first time in 2009. It was all for my friend's bachelorette party and it was all worth the pain I'm in today. I fully expected to be paying for wearing heels all night. By the end of the night, I was in excruciating pain. I couldn't bear to take one more step in those shoes, beautiful as they were. My SI joints and lower back muscles were aching but the worst of the pain was in my feet. Again, this was all expected. 

A quick side note here. I just want to say how wonderful it felt to get all dressed up and go out. It's been a long time since I've been willing or able to do that. I put on these beautiful purple satin, 1940s style heels and my Marilyn Monroe red lipstick. I felt like myself again. I used to get dressed up almost every day. But a lot of that had to go when I started getting more and more sick. Anyway, it was nice to know I can still feel like that.

When I woke up this morning (and by morning, I mean 1:15 pm), I was about 10 minutes away from my pills. I needed to eat a quick breakfast before I could take my morphine and Lyrica. I knew those first few steps after I got out of bed were going to be rough. I was right, they were. However, that was not the worst of the pain. I was very surprised to find that my whole entire body hurts to touch. There are parts that are more sensitive than others like my thighs, rib cage, left side of my lower back and the skin over my SI joints. The pain is so intense that I cannot touch any part of my body even lightly. I cannot put my hands on my hips or gesture with my hands and let them fall to my lap. I cannot tie the belt on my robe because the slightest pressure is too painful. I cannot fold my arms and let them rest again my body. I have to carefully get into bed because the pressure of the pillows against my skin is too much. I have had days like this before, but not quite to this degree. I didn't do anything to provoke it that I know of. I didn't drink last night or eat anything unusual. I did push myself physically but not in a way that would cause this. I am assuming this is a Herx reaction from my new antibiotic Cedax. I just started it less than a week ago but have not had a typical Herx reaction. I have actually felt ok, with the exception of increased joint pain and a relentless headache. I can only assume that this is the result of inflammation from a Herx reaction. It is quite intense. The inflammation and sensitivity to touch started a day or so ago. I noticed last night at dinner that I couldn't gesture with my hands and let them fall to my lap without pain. During the worst months of this illness and leading up to my gallbladder surgery, I remember this kind of inflammation. It always affects my legs this way. My thighs are sensitive to touch, not the back of my legs but my lap. It's weird. Today, however, the pain is everywhere and far more intense. I'm going to take some Aleve and see if it helps. But, wow, this is bad!

IV Rocephin Therapy

This week I started IV therapy with Rocephin. I have gone through this treatment before, on and off for a few months, about a year ago. I have not tried it since my gallbladder surgery in August of 2008. I was told from the beginning that Rocephin can cause or exacerbate gallbladder problems and that many people eventually have to have their gallbladders removed as a result. I was one of those people. I do think that Rocephin was a big part in speeding up that process but I had had problems with my gallbladder for years before I took it. Another fact that complicates matters is that I also took the birth control pill Yaz for a few years before the surgery. There is evidence now that Yaz can cause heart attacks, strokes, deep vein thrombosis, pulmonary embolism, gallbladder disease or even death. Click on the following link for more information.

http://www.usrecallnews.com/2009/09/fda-sends-warning-letter-to-makers-of-yaz-yasmin.html

If you took Yaz and experienced any health problems, please file a report with the FDA by following the link below. There are many law firms around the country that are preparing and filing lawsuits on behalf of the people who may have been harmed by taking Yaz and a few other newer hormonal contraceptives. I do not yet feel comfortable participating in any lawsuits. But I do think it is important to file a report with the FDA. At the very least, I am a part of the process of discovering the extent to which this drug may have caused harm.

https://www.accessdata.fda.gov/scripts/medwatch/medwatch-online.htm

Back to Rocephin. There are many, many different Lyme protocols out there. One of the most trusted and widely used is the Burrascano protocol (http://www.ilads.org/files/burrascano_0905.pdf). Each protocol dictates different maximum dosages of each Lyme drug. Here is an excerpt from the Burrascano protocol for the use of Rocephin (Ceftriaxone):

"Treatment with ceftriaxone is dosed at 4 grams daily- given either as 2 grams IV twice daily, or 4 grams 

slowly once a day, four days in a row each week, usually for 14 or more weeks. Such a regimen is not only 

more effective in the Chronic Lyme patient, but regular interruptions in treatment lessen the potential 

complications of intensive antibiotic therapy with ceftriaxone, such as biliary sludging and colitis. Hence a 

more effective, safer regimen that by virtue of the treatment breaks, is less costly and affords the patient a 

more acceptable lifestyle. IV access with a heparin lock becomes possible (and preferred)."

As much as I would love to participate in treatment following these guidelines, I simply do not have the means to at this time. This is a rather aggressive protocol by most standards and not one that my current doctor is willing to order. I will be seeing a few more specialists soon, starting with Dr. David Reifsnyder in Lakeland, Florida, and hopefully one of them will be able to carry out aggressive treatment with IV antibiotics. 

Last week I did restart treatment with IV Rocephin (ceftriaxone). Last time I took this drug, I had very strong Herx reactions. I was usually ok the day the IV was administered but by the next day I would experience an exacerbation of tachycardia, joint pain, muscle pain, fatigue, lightheadedness (from lowered blood pressure), fever and headache. Even though I was started at a considerably lower dose than is called for in the excerpt above, only 1 gram a day for 2 days a week, I had strong Herx reactions. My doctor considers this the maximum dose and will not go any higher. In fact, in order to reduce the severity of the Herx reactions I was having, he reduced the dose to 1/2 a gram at a time 2 times per week. While the reactions were not as strong at that dose, they were still hard to tolerate. At the time I was working and trying to participate in a full social and personal life. Now, however, I am not working or going to school or socializing as much so it is not as important to keep me functioning. I believe that now is the time for a much more aggressive approach because I am willing and able to tolerate stronger Herx reactions. However, my current doctor still uses caution when prescribing IV Rocephin. At my follow up appointment 2 weeks ago, he ordered IV Rocephin as follows:

• 1/2 g once per week for 2 weeks
  
• 1/2 g twice per week for 2 weeks
  
• 1 g twice per week for 2-4 weeks
  

As you can see, he is taking a gentle and gradual approach. He is also combing some naturopathic elements with the medications. He started me on Saventaro, an herbal supplement widely used to treat Lyme for its non-pharmaceutical antibiotic qualities and anti-inflammatory properties. Saventaro is a brand name for the supplement Cat's Claw and is discussed in the book The Top 10 Lyme Disease Treatments (You can read information about and purchase the book at http://www.lymebook.com/top10book). I am also taking the supplement Nattokinase, a supplement considered a breakthrough in Lyme treatment because it is an enzyme that dissolves the biofilms that protect the bacteria in the cyst form. The research for Nattokinase is still pretty new and information can be hard to find. I like this article I found on another Lyme blog that discusses the topic:

http://www.lymediseaseresource.com/wordpress/new-hope-for-most-chronic-cases-of-lyme-disease-part-one/

Until I can see the new specialist and figure out my next move, I am happy to following the protocol I discussed in the above paragraph. Although my current doctor, Kirti Kalidas, believes in a gentle and integrative approach, he agrees that it is time to participate in a more aggressive protocol. My latest labs and some new and amplified neurological symptoms seem to be leaving us no choice in the matter. That is really fine by me. The whole point of taking 6 months off work was to rest and be aggressive. In order to do that, Dr. Kalidas is encouraging me to get a second (or third, remember Dr. Robbins?!) opinion and find a doctor who will administer higher doses of antibiotics. In the meantime, I am following the protocol below:

1.) 1g IV Rocephin twice per week-I chose to start at this dose rather than the more gradual approach he intended for me. I just didn't see the point in going slow anymore.

2.) 1 Saventaro in the morning

3.) Nattokinase 1 in the morning and 1 at bedtime-Take on an empty stomach and increase to 2 in the morning and 2 at night after 1 week.

The first dose of Rocephin-1 gram on Wednesday, September 16th-hit me pretty hard by the next day. I spent all of Thursday in bed too exhausted, weak, and lightheaded to get up. I remarked that even with all that, the Herx reaction seemed far less severe than last time I took Rocephin. When I say I could not get up, I mean that I literally could not get or stay out of bed. The lightheadedness was so intense that it made it nearly impossible. I wish I had a way to check my blood pressure at home because I think a reading on Thursday would have shown that it was very, very low. The day before, in the IV suite just before I got Rocephin, my blood pressure was 99/60. That is low but not dangerously so. I have been taking Beta-Blockers for a few years now to control tachycardia and they lowered my already low blood pressure significantly. I also recently started Paxil, an SSRI antidepressant and I wonder if it is responsible for my latest, all time low reading, of 96/56! Now, that is low even for me! I replaced Wellbutrin with Paxil and have been feeling significantly less anxious and depressed. So I spent all day Thursday in bed unable to get up. Later that night I had a fever that started at 99.3 and went all the way up to 100.1. Now, fevers are very common in Lyme disease and are very often a part of initiating or increasing treatment. I always get a fever during a Herx reaction, but not usually quite that high. I did notice that 2 big things were missing from this Herx reaction, the pain and tachycardia! In fact, tachycardia is usually one of the biggest components of a Herx reaction for me. I usually have to check my heart rate several times a day and wonder if it will get so high that I will have to go to urgent care again. This time, however, my heart rate stayed in the 70s and 80s. That came as quite a shock. By Friday morning, I had some of my energy back and drove myself across town for another gram of Rocephin. This time, the Herx reaction started later the same day with exhaustion, fever, weakness and a bad headache. The pain I did not report on Thursday, I discovered, was a reflection on the fact that I stayed in bed al day. I did not get up even to shower, only for the occasional glass of water. If I had, I would have found out that after only a few minutes on my feet, the pain in my SI joints and the surrounding tissues was so intense that I needed my ice packs immediately. Because I knew how rough Thursday was and Friday was not going too well either, I was sure I would need to prepare for Saturday to be rough. So far, however, it's not been bad at all! I was ready for such lightheadedness that I would be unable to get up and for overwhelming fatigue and pain. Actually, all that is really happening is I have a slight fever and headache. Since last night, my fever has hung around at 99.3 but hasn't spiked. In fact, I feel well enough to sit here and type for over an hour. I even got up and played guitar and sang for a while. That is something that I can only do on days when I've got the energy and inspiration to play. It is always a good sign when I play guitar and sing. All in all, today has not been half as bad as I expected. I slept alright and got up at 9:15 in the actual morning! As someone who has been fighting the urge to stay up all night and sleep all day for years and years, going to sleep with half as much xanax by 10:30pm and waking up in the 9 o'clock hour is a big deal. I was expecting to have to pack a lunch box to keep near my bed in case I couldn't get up. But that won't be necessary. I even feel well enough to get up and take a nice long shower. Fevers always make me feel a little icky so I'm looking forward to that shower. I really am surprised that today is an ok day. I was bracing myself for a rather strong Herx reaction. 

But no matter how strong a Herx reaction may be for me these days, it is still amazing that I can rest whenever I need to. I have access to everything I need, food, water, ice packs, my bed, all the time. Blood sugar, fatigue, and pain are all manageable from home. And, I don't have to wonder whether or not the brain fog, difficulty concentrating and reading, or the haze caused by pain pills is going to interfere with work projects or dealing with customers. None of that matters. I just get to be. It is pretty amazing and I feel very, very grateful for it.