1 Week Countdown!

   So this will be a short post, but I'm excited to say my SCS trial is one week from today! I'm feeling pretty confident & I feel this is the road God has led me down. From all of the stories I've read on people who've tried the stim, a very few have had little or no relief. That's very encouraging to me. I keep reading about women who have had children with a SCS, and that too makes me very hopeful that motherhood is within reach for me too! This disease has taken so much from me in just 2 years- from a job I held for 10 years, to being active & social. I can't even do many household things anymore. I have resorted to being on long term disability and social security benefits. This trial could change my life. I know it's not a cure and I will still have limitations, but once you live with a disease like CRPS, any relief is a blessing. So the countdown begins and I ask for some prayers that this will finally be my saving grace!

Holidays with CRPS

   I hope everyone had a wonderful Thanksgiving holiday! I truly had a great past couple of days- not because I was feeling great, but rather because I had amazing company. I enjoyed quite the feast with my family on Thursday and with the in-laws on Friday. It's actually fortunate with my current circumstances that my dad and my husband's mom insist on always cooking for the holidays. Lord knows it would be too stressful for my husband to try to put together a family gathering by himself as I wouldn't be much help. (I don't cook, but I used to be able to clean!) It's hard enough on him worrying about transporting me in the car to our family's houses as that never fares well with my pain.
   So aside from the meals, I LOVE the holidays and everything that goes with it. I enjoy the decorating, the shopping, the festive parties. The worst part over the past 2 years is that I cannot enjoy those things like I once did. I have a large (fake) tree that I can barely wait till Thanksgiving to trim, along with all of my other Christmas decorations and lights to put up. What used to take me a day to do everything, this year has taken me almost 2 weeks to get things out little by little. I even started earlier than normal anticipating I would need to take my time. It's officially almost the Sunday after Turkey Day & I'm finally done. With my CRPS in both legs, I cannot even begin to count the times I had to sit & rest or take pain killers just to try to get through one more box. What has always been such a joyful activity for me has now become a tedious chore basically. It's another sad reminder of how having this disease limits everything we can do. I almost considered throwing in the towel this year knowing decorations do not define the holiday, but I was determined no matter how long it took me, I would not let this defeat me. With a debilitating illness, it is really important to not let it take everything from you that brings you joy.
   As far as shopping for gifts goes, I think I will be doing most of that online this year. I currently cannot drive due to pain, and riding passenger is just as bad for me actually. I can't stand the bumps and sudden stops or jolts. Unless I am going to a doctor's appointment, I really don't get out much these days. I have to use a wheelchair when I do go anywhere, which makes being out and about not very appealing anyways. That brings me to holiday parties. I think I'm passing on any of those this year. I love being around friends & it definitely brightens my spirits, but for me, it's just not worth the repercussions. I am still young & this won't be my last opportunity to celebrate the festivities. Besides, parties, decorations and gifts do not make a holiday. They are all things we have integrated into the holiday season simply to help bring smiles and merriment. What we need to remember is the true meaning behind Christmas & why we rejoice in that day. It's the people we spend it with, the birth of Jesus & the gift of forgiveness. As long as we keep that in mind, it makes our illness a bit more easy to bear. After all, someone else once decided to bear the weight of the world for us! ;o)

Pre-Trial Procedure Consultation

   So the hubby and I went to see my PM doctor (Dr.S) this past Friday to discuss the details of my upcoming SCS trial on December 6th. The appointment went pretty well as we discussed what to expect during the trial & what my limitations will be. I will have two leads inserted into my epidural space, one for each leg. I've learned it's very crucial to talk to your doctor about the location & details of your pain, especially when considering a SCS. I've heard it is best to have a separate lead implanted for each limb in order to get the best coverage as well as so that you may control only the area giving you pain versus having the SCS on in other areas where it's not needed. I need coverage for both legs, from feet to lower back. Also, my left leg tends to be worse, so I may only need the SCS for that leg & not for the right at times. I want the ability to have that control. During the procedure, I will be awake but slightly sedated so that I hopefully will not feel any extreme pain but will be coherent enough to let Dr. S know if I'm getting sufficient coverage from the stimulator. 
   After the procedure which should last about an hour, I will get to speak with my St. Jude representative who will work with me to program the SCS in whatever way will help me most. I chose St. Jude as the company I wanted to go with because I found their site to be very helpful, user-friendly and I like their ambassador program, which I did use. I was able to connect via email and then phone with a 20 year old female who had a SCS implanted. She was very open to sharing her experience with me as well as advice for post surgery. It was also very relieving for me to hear her story & it made both of us feel like we weren't alone. It also helped that she was fairly close to me in age and we both were very active prior to our CRPS diagnosis. Though I'd never wish this disease on anyone, it's comforting to have someone to talk to that understands. Now every PM doctor / practice might be different, but I was given a choice of which company I wanted. I recommend doing research on your options and if allowed, choose the one that makes you feel most comfortable. The decision to get a SCS is a very big one, and the representative from the company that is providing your equipment, as my PM doctor put it, will become one of your best friends. They will be there to answer any questions, help fine-tune your system when needed and be there if anything goes wrong. St. Jude has a great reputation, so I hope I made the right choice.
   Another choice I had to make was how long of a trial I wanted to do. I could do a 3, 5 or 7 day trial. Because I want to be absolutely sure this works, I opted for the 7 day trial. My PM doctor was a little apprehensive of letting me do the longer trial because I happen to have a compromised immune system & am on a low dose chemo pill to suppress my immune system. This unfortunately increases my chances for infection from the procedure, especially the longer I have an open wound (where the SCS wires will exit my back to connect to the battery pack). Dr. S has decided he will start me on antibiotics the day of the procedure & have me continue to take them during the trial. This will hopefully kill any harmful bacteria that may get inside the wound.
   So that pretty much concludes the important topics of this appointment. If the trial works and I decide to go ahead with the implant, we won't have it done until after the new year. The holidays are just too close at this point & since Christmas is my favorite time of the year, I don't want to be totally out of commission for it. I just think of it as starting out the new year with a new beginning- hopefully one with a lot less pain!

Pictures after the tumor removal surgery

Left foot, 1 tumor removed

Right foot, 3 tumors removed

Right foot again

Left foot again

Left foot again, Very obvious color change

   The surgery was done April 21, 2010. By August I was diagnosed with CRPS and Raynaud's Phenomenon. Aside from the distinctive symptoms, I had a bone scan done to help confirm the diagnosis. You would think I might be really angry at the doctor who performed the surgery or regret the surgery altogether, but that's not the case. Thing is, CRPS is not necessarily caused by a mistake of any kind and there's not a particular cause for it. It truly is something that just happens after trauma sometimes. I do not blame my surgeon at all. Also, I do not regret having the surgery, though the repercussions have been terrible. The tumors could have been cancerous, which if left untreated, can spread & even be fatal. There was no way to know if they were until they were removed and biopsied. The tumors were also getting so large that I couldn't wear shoes other than flip-flops and could barely walk. I was also losing feeling in my feet so bad that I almost fell once at work. I needed to have the surgery, hands down. Now, rather than dwell on what might have been, I will focus on facing the future & dealing with the cards I've been dealt - conquering one day at a time!

Pictures before the tumor removal surgery

Left Foot

Pointing to the large tumor on my left foot

Color Change on left foot

Blue / Black color change on left foot

Left foot again, horribly cold & blue

Left again, nails are blue too

Swelling & color change

Left foot again

Swollen & blue

    I realized after uploading these that I really don't have any pics of my right foot before surgery. My left foot was and still is worse than the right though. After surgery pics are next.
   These pictures are of course before I was diagnosed with CRPS. The pain I was having at this point were because of the size and location of the tumors.

Introduction to my life with CRPS

   Up until January 2010, I was very much an ordinary twenty-five year old. I will fully explain my purpose for this blog in the last paragraph, but I want to share some of my journey first. I've always been very independent and a go-getter. My then fiance & I were living in our first home, just purchased the previous October. I was working full time, about 50 hours a week, as an assistant manager in a retail store. It was the start of a new year & I was finishing plans for our May 2010 wedding, much of which was hand-made & detailed by myself. As most bride's know, a wedding is somewhat of a production and mine was nothing short of that with myself both the director and the star of the show. I'm a bit of a perfectionist, although if you ask my now husband, he'll say I'm just plain anal retentive! Lol. On top of my own wedding, one of my good friends was getting married one month before me and I was set to be a bridesmaid. I wanted to be the best maid I could & help with whatever she needed. This is just to give you an idea of what was going on in my life up to this point. I was a busy-body and always on the go, needless to say.

   I know this is going to be a long first post, so I will try my best to sum up what I could turn into a book. I was at work in January when I first started noticing the pain in my left foot. It started out just as achy, then over time progressed into a sharp pain and my foot would go painfully numb. Then in February, it started happening with my right foot as well. I noticed that I had a lump forming on the outside of each ankle that was painful to the touch. Both of my legs were swelling quite a bit from the knees down as well. I went to my PCP who sent me to an orthopedic surgeon for an MRI. Turns out the lumps were tumors.

   Now I had two options: 1) have surgery to remove the tumors that could potentially be cancerous and hopefully that would fix the pain, or 2) try to bare through the pain, see how things go and just monitor the tumor growth. A big part of my decision for surgery was that it was getting more painful to walk and wear shoes every day. I could barely deal with the pain which was made worse by being on my feet 10 hours a day at work. By March, my feet had started turning blue/black, especially near the toes and my feet were cold as ice constantly. An even bigger part of my decision was my upcoming wedding. It was only a couple months away & I couldn't postpone it- so there was the thought I wasn't even going to be able to walk down the aisle. My husband & I made the decision that surgery as soon as possible was best. On April 21, 2010 I had the surgery to remove all of the tumors at once. By that day, I had a total of 3 tumors on my right foot and 1 (the biggest) on my left. They turned out to be benign, fatty tumors (lipomas) so that was a relief. Now everything would be fixed, right?! Little did I know this surgery would lead to the worst pain I've ever experienced & as of now, two of the most difficult years of my life.

   Two weeks after the surgery I knew something was very wrong. A new, much worse pain had developed in both feet near the incisions and there were parts of my feet I had no sense of feeling in. When I talked to my Ortho's assistant about this, he said there may have been some nerve damage during the removal due to the size and location of the tumors, but that it would eventually "fix" itself as the nerves repaired themselves. I did limp down the aisle at my friend's wedding just days before my surgery and we did go ahead with our wedding, barely a month after my surgery. It wasn't easy & I was in a lot of pain, but it was so worth it. It turned out beautiful! Fast forward to July 27, 2010. I had a few tests, including a bone scan and was diagnosed with both Chronic Regional Pain Syndrome (CRPS) and Raynaud's Phenomenon. I saw my first pain management doctor and started my first series of three nerve blocks. I had about 50% success with these and after the doctor said our only next option was a spinal cord stimulator, I thought I needed a second opinion as this was a very serious surgery. In September I saw my new PM doctor at Emory University in Atlanta. I will call him "Dr. S". He's amazing and wanted to try everything possible for me before the SCS. We weren't out of options.

   We tried 2 more nerve blocks and a radio frequency ablation with Dr. S. Again, I had about a 50% success rate. We were prescribed all of the conventional medicines as well as some medicines experimentally hoping for some good results. Some may have helped a little bit, but most either didn't have any effect on me or just made things worse. Pain medicines weren't helping either. Now it was January 2011. We decided at this point to look into the SCS trial, but eventually opted to put that on hold for more tests and a few more opinions as recommended by a couple of my doctors. I just had so many weird symptoms and odd test results that we thought perhaps my diagnosis was wrong all along. By this time however, my pain had spread from my feet up my legs and into my hips as well.

   As I may have left a ton of details out as not to bore you too much, and 16 specialists later; my SCS trial is officially scheduled for December 6, 2011. I have my pre-surgery consultation this Friday, November 18th. This leads me to the reason for this blog. I am dealing with a disease that affects a truly astonishing number of children and adults that even fewer people understand. I want awareness and a feeling of hope for all of us. There is no cure yet, but I know there is strength in numbers and if we all band together I know it will make each day easier to bare. I know the feelings of hopelessness, depression, anxiety, constant pain and the loss of friends who don't believe anything is wrong with you. I want to reach out to others and hope that perhaps through my journey, it may help someone else in some way, whether it be advice, someone to cry to or just to vent their frustrations with. I also have a huge goal. I want to be a mother more than I want anything else in this world. There is not a lot of literature on the subject combined with CRPS and a spinal cord stimulator. I want to change that. Part of my goal to motherhood is to share every bit of that journey with you from the SCS trial, to planning for a baby and God willing, giving birth. I am terrified of how pregnancy may effect my CRPS as well as vice-versa. I hope to perhaps ease some others' same fears by giving one perspective on the whole process. I enjoy feeling like I'm not alone and I imagine so do many others. From now until the trial, I hope to share more details of my story thus far, some struggles I've had and answer any questions others might have. I will also try to detail every bit of the SCS trial, including posting pictures and possibly videos. I appreciate any feedback and hope this can help even one other person facing this disease. Thank you for reading! ;o)