Resting Up and Good Friends

So before I post my whole RSD Story, I thought I would wrote a shorter update on us. Like I said previously, Aaron played in a golf tournament for The Lung Transplant Foundation and did fairly well. I was extremely proud of him for playing all 18 holes in the heat and humidity. He has had a lot of fatigue and shortness of breath lately that has been making it difficult for him to do things. He almost decided not to play, but after some convincing from me, he decided to stay in it. I think he is glad he did, even though he was EXHAUSTED afterwards.

Both of us had kind of had a lazy beginning of the week. Monday was a rest and recovery day for Aaron, and I was still fighting the pain flare. Tuesday I had to meet with the rep from St. Jude ANS about my spinal cord stimulator (for those that don't know what it is, it's basically two thin wires (leads) that are inserted into the epidural space of my spine. The leads trail down, are anchored to my spine, and are then tunneled under my skin to the "battery" or IPG- Impulse Generator. The reps program this generator, which also is part recharageable battery with specific settings to try to "cover" the areas of pain. It feels like a mesaging sensation, though it's very difficult to describe the feeling. Basically the idea is to interrupt pain signals as they travel up the spinal cord before they get to the brain). My stimulator works ok, it could be a lot better. It doesn't cover my back and hips, only my legs. If I wanted back and hip coverage, I would need a new system. It would be pretty major surgery as they would have to perform a laminectomy- removing part of one of the bones of my spine and scoop out the scar tissue blocking the epidural space, so they could put the leads there. I am really, really not ready for that, and don't want anymore back pain and problems than I already have. Anyway, I met with the rep on Tuesday, as I do from time to time, to tweak the settings to get the maximum relief and benefit from it. The past two times I haven't met with the rep I have been working with for over two years. The last time I met with some guy who was more interested in trying to sell me a new system and wanting me to have the surgery I talked about above then making what I have now work. I will NEVER meet with that guy again. The guy I met with Tuesday at least didn't try to sell me anything, but I think he screwed up my settings pretty bad. I don't know that he knew exactly what he was doing and really didn't understand what I was trying to tell him. I ended up with something that was a little better, but not really. He completely forgot about my right leg, though. I might have to go back and see my normal rep since when I lay down my legs twitch and jump from my stimulator and I have been getting horrible cramps in my back when it's been on, which is almost constantly. Whatever he did for settings is eating up my battery life, and I will be recharging my battery ( I have a rechargeable unit that has an antenna that is placed over the skin on my battery site, and it slowly charges the battery over 2 or so hours- depending on how low I let it get).

Today we went and had lunch with a group of really good friends. We have become close with a lot of people in the Duke Cystic Fibrosis/Lung Transplant group. There is an amazing community down here, and because of that, we have become close to many of them. When we moved down here (North Carolina) from Maine for Aaron's 2nd transplant, we really knew no one, but through the wonderful community that Duke has built, we met some wonderful people who can relate to our experiences. They are truly some of the strongest people I have met, and they continue to inspire me on a daily basis. They are such a wonderful group of people, and we are so thankful to have them in our lives. Mass General certainly did not have that kind of atmosphere and community, and really didn't know any other transplant people. It would have been very lonely for us down here, otherwise, since our families are still in Maine, and we only get to see them a few times of year.

I think the rest of the week is just relaxing. Aaron has a 4 hour infusion tomorrow that he gets every 3 months to help prevent chronic rejection and help his non-exisitant immune system to fight off anything that may get him sick. I am still struggling a little with the pain flare. Today was the best day out of the entire week so far, but that's not saying much. I know this heat and humidity we are having certainly isn't helping. It feels like August outside right now. My deck/patio/balcony container garden is not liking the high heat, and desperately needs water. I have never seen the soil dry out so quickly, even with the water holding crystals I have. I am also hoping the water at the pool is warm enough for me to go swimming (cold is extremely painful, and if it's still too cold, I won't be able to go in). I can't wait to get my paperwork signed so I can go back to aqua therapy (well member swim since I insurance will no longer pay for me to continue seeing a physical therapist. I wasn't making enough progress, and my pain levels were still staying around an 8/10 on most days. It definitely helps with the stiffness and muscles issues from the fibromyalgia. Hope everyone has a good rest of the week, and manages to stay cool. We won't be outside much! My RSD Story is up next!

Weekend, The Spoon Theory and Pain

First off, I wanted to say forgive me if any of this is gibberish or doesn't make much sense. I am running on Absolutely no sleep last night, and I spent an hour earlier writing this blog post and ended up losing it. It was completely done, but I wanted to re-read it and make sure there were no typos, but in between there and an attempt at a nap, the majority of the post was deleted. It has been a tough day pain-wise. I have been in quite a pain flare since yesterday.

This weekend (well Friday evening) started out great. What was supposed to be a busy weekend, only ended up partly so for me (Aaron was much busier). It ended up being interrupted by a monster "pain-flare," but at least I got to enjoy part of it. We went to see the Pawtucket Red Sox play the hometown Durham Bulls with friends of ours (AAA minor league baseball. They are the farm teams for the Boston Red Sox and the Tampa Bay Rays).Aaron and I were very torn about who we were going to cheer for and support, as we are die hard Boston Red Sox Fans (have been born and raised in New England), but we have made our home in Durham (can't believe we have been here almost 3 years!!) and wanted to support the home team as well. Aaron was a walking contradiction with a Red Sox shirt and a Durham Bulls hat. We ended up cheering for both teams, much to our friends' dismay. The Paw Sox ended up winning 6-3. We got to see two Boston players who were spending some time in the minors- Marco Scutaro and Hideki Okajima, which was really neat. The best part of the night, in my opinion, were the fireworks after the game. The Bulls have fireworks after every Friday home game. I wasn't expecting a whole lot with it being almost a weekly occurrence, but I must say I was very pleasantly surprised by a fairly long and great show. It wasn't just one here or there, it was several at a time for at least 7-8 minutes. I never knew so many fireworks could fit on such a small "trailer" parked in the middle of the field. If I can figure out how to upload a slideshow of photos on here, I will post some pictures from the game and fireworks. For now, here is a picture from the fireworks display:

Saturday was a day of necessary relaxing and recovering. Living with chronic illness is a balancing act. There always has to be some give and take. For example: I can usually got out and do something one day and may not "pay for it," or have extra pain because of it if I rest the next day, but if I were to spend two days going out and doing something without a rest break in between, I will usually end up "paying for it" in extra pain, fatigue, and some immobility due to the pain. It is always a balance of trying to live your life, get out of the house and do something you enjoy, and overdoing it. The tough thing is the days when you don't feel as bad as you normally do (also knows as a "good day," which are far and few in between), you have to remind yourself to take it easy and not do too much .It's east to go overboard as you that "good days" don't happen often and you want to take advantage of it while you can, doing everything you were saving for the above mentioned "good day." There are so many things I save for the day I have less pain and more energy, and most of the time I end up overing and ending up in a pain flare unable to do many of the basic things. You would think after almost 8 years I would have figured it out by now, but I am stubborn and know I have to take advantage of the "good days" since they don't come around very often. I usually end up asking and relying on Aaron to do things that require me to stand, walk, bend down, or a lot of movement. I absolutely hate that feeling, and I REALLY hate feeling useless. I truly don't know what I would have done/do if I ever found/were to find myself in a situation where I was living alone with no help- there are many days when even walking to the kitchen and preparing a simple meal is too much for me. I have definitely come to rely on Aaron more that I want to admit and more that I like, but I have little choice. I am so thankful to have him, and I don't express my gratitude often enough. 

Speaking of balance, I do want to mention something called The Spoon Theory. This was written by a young woman who has Lupus, but it really and truly can apply to anyone that has limitations due to a chronic illness and/or chronic pain. I, myself, do not have Lupus, but have several different chronic pain conditions (I pretty much now have constant and severe full body pain that never goes away. I've been living with it for almost 8 years now, and it never drops below an 8 into the bearable range). I came across The Spoon Theory several years ago when I was still angry about my disease and the "life sentence" that came with it. I didn't know anything about balance, and I struggled with very severe depression. I spent most of my time in bed or sleeping because it was better than feeling the pain and dealing with the disease and my depression. Finding The Spoon Theory somehow put words to my struggles and allowed me to share with others my limits in a tangible way that they could understand. Most had never know illness, severe and chronic pain, fatigue and having to set limits on what they could do. It also reminded me that overdoing it on some days, short-changed me the next day or two, or sometimes even longer than that. I didn't want to accept that I had limitations and that I may have to pick and choose what I wanted/was capable of doing, saying "no" to something I really wanted to do and was looking forward to- what college student/20-something year old does? The basic principle of The Spoon Theory (link above) is that someone with a chronic illness (Lupus in the author's case) starts a day with so many "spoons" (i.e. energy, possibilities, etc.) unlike someone healthy who may have unlimited spoons in a day. Someone with a limited number of spoons has to plan out how they want to spend those spoons during the day. Every little thing and activity you do has consequences and takes a least one, maybe more spoons- including getting out of bed, showering (which is also extremely painful and cannot be done daily), getting dressed, doing your hair, preparing meals, leaving your house/apartment, spending time with friends, going to the store, appointments, etc. Towards the end of the day, you may find you only have one or two spoons left and you have to decide how you want to spend them, possibly choosing between preparing a nice, healthy meal for yourself or trying to do something fun. Sometimes during the course of a day, you inexplicably lose spoons depending on how you are feeling, but once you lose a spoon, there is no getting it back. Some days like today for me, when your pain has kept you up all night and you have gotten very little or no sleep, you will start that next day with even less spoons. You can't rally try to "stock-pile" spoons and save them for the next day, but occasionally you can try to borrow spoons from a future day, but you will end up short-changing yourself in the end-sometimes it is worth it, and sometimes it isn't. You won't know that until well after you have made that decision. As I said before, it's a delicate balance. Sometimes it's like walking a tight-rope making sure not to have any missteps so you don't fall over the edge. The Spoon Theory is something that anything with a chronic illness can relate to, and it really helps us explain to those of you that are healthy with unlimited energy and possibilities what i forgranted t's like to have walk in our shoes and have little energy, making them think about every little task you may take forgranted or you may think is mundane- like cooking, showering, getting dressed, etc. Many people don't realize the effort those "simple tasks" take for some people. The lack of good, restorative, quality sleep for those with chronic pain/illness make those tasks even more difficult, making them feel like a production just to do them. Most of us with chronic pain have severe, sometimes debilitating and chronic fatigue. I can't remember the last time I felt like I had energy or woke up feeling rested. We all need the deep, restorative sleep for the body to heal itself, but those with chronic pain often don't get that, and the body can't fix itself, perpetuating the cycle. I would really suggest that everyone takes time to read The Spoon Theory for themselves. I have printed out a copy and put it on the fridge to remind myself that I am not and cannot be "Superwoman," and to give others who are completely healthy an idea of what it feels like to live in our world. I find many people understand me and my choices a lot more after reading it. I also waned to provide a few other links for your reading pleasure about RSD/CRPS (Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome- same disease, two different names), and what living with RSD/CRPS feels like. My next post will be more about my RSD and my "RSD Story," but some of these go along with The Spoon Theory. The first one is A world with RSD/CRPS as your constant companion, which was written by a fellow RSDer and friend of mine (She uses her injury and location of her RSD, I believe she has full body RSD now, but it started in her hand, while mine is mostly in my feet, ankles, legs, hips and back, with some pain in my hands, wrists, shoulders and chronic migraines, which is more likely fibromyalgia pain- or at least I am hoping that's the case, since I dread another spread of this monster. It has enough of my body- from upper back down. Anyway, this is a great account of what we live with on a daily basis). The second one is written by the founder of RSDHope- What does RSD/CRPS feel like? (there is only one big change from what was written there. He refers to the Old Version of the McGill Pain Index, which was developed as a way to gauge some types of pain from others (i.e. childbirth/labor, spontaneous amputation of a finger, neuropathic pain, cancer pain, etc). RSD is listed as Causalgia on the graph, which places it as the most painful and severe type of chronic pain known to exist. The McGill Pain index has recently been changed and upgraded, and RSD has been rated even higher on the scale than it did before (it used to be a 42 out of 50, and I can't find the new number, but I think it's 45). I do want to mention that I don't want to sit here and compare pain. Pain is very real and a very personal and individual thing. The only frame of reference for pain is our own- one reason I absolutely hate the pain scale, since my tolerance may be higher or lower than someone else's, making my 5 someone's 1 or even someone's 20. It's not a very good gauge or measure. We may have different pains, but pain is pain and is real to you. YOur pain may be aching or sore, which I have burning, shooting stabbing pain. My 10 might be your 2 or your 20. It really depends on the person, and I never want to belittle our pain or make you feel like the pain you are experiencing is wimpy and nothing compared to me. You are feeling that pain here and now, and the only frame of reference is your own, and your tolerance and coping with it is your own as well. I hate it when people are afraid to tell me they are in pain, or don't want to tell me because they feel like they are whining, sine I live with constant pain. It's a frustrating situation, and I always want to validate your pain. So many of us are made to feel like we are crazy or it's all in our heads, and I never want to do that to anyone else. Anyway, moving on...

On Sunday, The Lung Transplant Foundation (the LTF) held it's first annual Fred Krenrich Golf Tournament (Fred is post-lung transplant and came up with the idea and helped plan the tournament, but eventually had to withdraw from planning. Fred has been battling chronic rejection, and is not a candidate for a second double-lung transplant. He recently moved back to be with his family, and is now in hospice, so the tournament was named in his honor). The Lung Transplant Foundation was founded a few years ago by a group of lung transplant recipients from Duke University Medical Center (where Aaron had his second lung transplant)  to promote and help advance research being done to improve outcomes among lung transplant recipients. This is the second big fundraiser the LTF has done, the first being Lungapalooza: A Walk or Breath, which will be held for the second year in Septemeber. Money raised by the LTF goes towards research grants that deal specifically with lung transplant and rejection issues. Lung transplants are the least successful solid organs transplanted. Many feel that because the lungs are the only solid organ exposed to outside air, that this must somehow be related to poor outcomes and low long-term survival rates. It is a very delicate balance of keeping someone immune suppressed enough so they don't reject their new organ, but not so much that they can't fight off any opportunistic infection. They also need to be careful of high dosages of immune suppressants because over time they can destroy the kidneys, and a person may end up needing a kidney transplant as well. There are currently no cure or sure-fire treatment for chronic lung rejection (Bronchiolitis Obliterans Syndrome or B.O.S.). Doctors can stabilize chronic rejection and hopefully stop it from doing any more damage to the donor lungs, and if caught very early, maybe even reverse some of the damage. The reason this foundation is so near and dear to us is because Aaron has had two lung transplants for Cystic Fibrosis- a living donor double lung transplant and a single lung re-transplant, and is currently dealing with chronic rejection of his "new lung." He is involved in helping plan events and promoting the Lung Transplant Foundation through digital media. His chronic rejection seems to be stable for now, but he has lost a lot of his lung function because of it. The only "treatments" they currently have (and most centers do nothing and don't use these medications) are very harsh chemotherapy agents that pretty much destroy your white cells and immune system. They have pretty much given him what they equate to Chemical AIDS, since one of the medication attacked those same cells. They also tried to destroy many of his antibodies with other chemotherapy agents in order to stop those from attacking his new lungs, but these treatments have left him with almost no immune system and with no way to fight off opportunistic infections (infections that you and I would never get because our immune system fights it off before we ever get sick). It can take well over a year (it will be much longer than that in Aaron's case) to build back up your immune system enough so that you are no longer an infection risk to yourself and aren't as likely to pick up the opportunistic infections. We will breathe a sigh of relief once his white counts come back up. We are hoping that his chronic rejection will continue to be stable, and that we won't have to figure out what next, or God forbid a third lung transplant, which is extremely rare. I am hopeful that this organization will be able to fund research studies that will find out the cause and mechanism for chronic rejection, which could have implications for other solid organ transplants as well, at least until growing back a healthy replacement of a damaged organ because a main-stream reality. 

Anyway, back to the Golf Tournament. Aaron played in the tournament on Sunday, and while I really wanted to help volunteer or at least go for the dinner afterwards, it ended up not happening. I knew from the beginning that there was no possible way for me to volunteer, since I would be on my feet from 7AM until at least 5 or 6 PM. I knew that was way too much for me, so I was hoping to meet Aaron for the dinner afterwards. When I got up Sunday morning, I knew that that would be impossible due to this massive pain flare. I was so disappointed that I had to change my plans yet again. I know it wasn't a big deal, but I just get so tired and frustrated of canceling and changing my plans at the last minute. I really hate planning ahead because I never know up until that day or sometimes even just hours before if I will truly be able to go. I feel like I am giving in to the pain sometimes when I cancel, but I have to listen to my body, no matter how much I want to ignore it. Sometimes I do push on, but many times I just end up staying home so I don't make things worse. It just feels like such an incredibly common occurrence for me, and I worry I am letting down my friends and family at times. I have slowly learned my capabilities and what my body is able and willing to do, though sometimes I still ignore them. I hate having to say no, or not showing up. My mind and body don't always agree. I have learned that it doesn't matter what people think about certain things, like my sleep patterns. Most of the time I can't sleep when "normal" people sleep, and have just learned to sleep when I am able- if that's during the middle of the day instead of at night, then that's what I have to do. It's not worth punishing my body in order to try to have a "normal" sleep schedule. No matter how hard I try, it just never works. I also know that if I need to lay down and take a nap, then I need to do just that if at all possible. It will go a long way in helping my mind and mental clarity, and many times severe fatigue and complete and total lack of sleep just drive pain levels up even more. You always hear people say listen to your body, and they are right, so while I hate that I couldn't go, I know where I needed to be. My pain would be exponentially higher (I'm already in a flare as it is) if I had gone anyway, so it was better for me to take care of me. 

On a happier note, we have a family of House Finches that have made a nest in the rafters of our balcony, under the balcony upstairs. Aaron and I have grown fond of them and feel like the proud parents ourselves. There are 4 or 5 babies in the nest, and mom and dad are frequently coming in and out bringing food. You always know when food has arrived since they all start chirping. I imagine they are saying, "Hey! I want some food! Come on Mom, me me me." They are just the absolutely cutest little fluff-balls, and you often see them sticking their heads up from the nest with their beaks wide open. The nest is up pretty high so we don't have a completely clear view into it, but we can see Mom and Dad and the heads and beaks of the little ones, especially when it's feeding time. We have definitely grown attached since we saw the beginnings of a nest a month or two ago. Here are some pictures of Mom and the babies: 

                                                      Mom watching over her nest

                                      

Little head and beak peaking out of the nest

Two little heads and beaks peaking out looking for food

Anyway, I think that's about it. I think it will be a fairly quiet week. I go tomorrow to get my spinal cord stimulator adjusted to see if we can tweak a few things to help me get better coverage and relief. I am extremely doubtful that that will be the case, but I can always dream and hope. The leads just aren't up high enough (due to scar tissue blocking the way- don't want major spinal surgery, with them removing a piece of my spine and the scar tissue in order to fix it. It's not guaranteed to help either), so I have to live with what I do have. It does help, and I would be even worse without it, but it could be better. I am also hoping to get my paperwork signed by the doctor while I am there so I can start doing aqua therapy on my own. I "graduated" from aqua therapy because insurance doesn't pay to maintain and I wasn't making enough progress for them. I keep trying to tell that that I didn't get this way overnight, but it doesn't matter. At least once I get the paperwork signed, I can start going and doing it on my own, and Aaron will come with me occasionally to help me stretch and provide traction for my spine while I am in the water. I would highly recommend aqua therapy to anyone with chronic pain- my only advice is to make sure the pool is warm enough. I had to switch to a pool 10 degrees warmer (the pool I am currently going to is around 94 degrees) because cold and RSD don't mix. The "cold" 84 degree water was more painful than helpful, and I like my current pool and the program I was doing much better. I am hoping to start back soon because I miss it. Alright, I 'm sorry I was so long-winded. I am going to try to do my next post on my "RSD Story." As always, I appreciate any comments, constructive criticism or anything else. I am new to blogging and sharing my story and life with the world. I don't know how often I will write, but I will try to do it a few times a week, depending on how Aaron and I are doing. Thanks for reading! 

Welcome

Welcome to my new blog. I have been pondering starting a blog for a couple months now. I wasn't sure if I wanted to put my thoughts out there for everyone to read, and if anyone would care to read my thoughts. I don't know how often I will write, but I am going to try to write at least once a week. This blog will mostly be about my day-to-day life as a chronic pain sufferer (I have Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome and Fibromyalgia) and significant other/caretaker of someone with Cystic Fibrosis who has had both a living-donor double lung transplant and a cadaveric single lung re-transplant, who is also battling chronic lung rejection of the "new" lung. At times this blog may contain medical updates for either one or both of us, but will mostly be about the struggles, emotions, hopes, triumphs, friendships, family, and general life, and how we cope with everything life has dealt us. Feel free to leave a note, constructive criticism (I have never written a blog, so I welcome any advice), and anything else you want to share in the comments section. Thanks for reading and following my journey through this thing called life.