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.