test="I hope that this update finds you and your family in good health.To all the Jews, Shana Tova.My sincerest apologies for the LONG delay between updates.To say things have been bumpy and crazy would be a grave understatement.Thankfully, not all the craziness has been bad and since I’m a “glass half full” kinda gal, I’ll begin w/ good stuff. (DISCLAIMER:this update’s long, sorry)On July 13th, Charles and I flew to Denver for one of our closest and oldest friend’s wedding. Charles was one of two best men in the wedding, which was held at a beautiful place, Red Rocks Park.You couldn’t have a more stunning view for your wedding.We spent a few days w/ Eric and his new bride Jess, along w/ their families.Everyone had warned me ahead of time about the change in altitude and how it could affect my asthma, so I brought extra inhalers, but the only times I really felt anything was when I was either dancing or running.Unfortunately, no one warned me about the difference when it comes to the sun, that there’s less protection out there.We were outside for a 15 minute wedding and before the reception started, I was burned Phillies red.Though both painful and unexpected, it was well worth it. One of the upsides of the trip was being able to travel sans parents, to take responsibility for myself like every 30yr old does.We had worked out everything in advance w/ both TSA and Jetblue at each airport and upon arrival, were met by supervisors from both. We were then escorted through security to a private screening room, where a female TSA agent was waiting to “lightly” pat me down.We were first to board on every flight and at the Denver airport; they gave us food and bottled water while we awaited our plane. I’ve never flown w/ such ease in my life and I know TSA gets a bad rap, but I can’t praise them enough, nor Jetblue. Okay, now back to reality. For the last 1½yrs I’ve been anemic.We know this b/c it was on my discharge papers from the hospital when I was going every 5wks for IVIG.Eventually, Mom and I became concerned b/c no one in Philly was doing anything about it.So, we went to my local primary who sent my blood for a more advanced workup to see what type of anemia I had.The results showed that my numbers were alarmingly low on multiple tests, but none quite as shocking as my Ferritin level. Ferritin shows the total amount of iron stored in your body, in your blood, muscles, tissue, etc.For a healthy female(yes, technically that does not apply to me in the broader sense, but for the sake of this argument, let us pretend it does), my age, the normal range is 30-200.Mine was 1.5.We are left w/ 2 problems here, 1)how to get my numbers back up, and 2)finding the cause of these results.Number one isn’t as easy as it should be to solve.All my docs are in agreement that I should get IV iron b/c it bypasses the gut.W/ all the GI problems I have from RSD, my body wouldn’t be able to tolerate oral iron.Unfortunately, I was put on oral iron b/c of how low my numbers were, just to try to keep them from going any lower until I found a hematologist.I couldn’t handle the oral iron, so they switched me to liquid iron which was only moderately better, but got me through till I saw a hemo.He concurred w/ the other docs that IV iron would most likely be needed, but since the liquid iron had brought my numbers up a bit, let’s see how I do for a couple wks.We tried that, but to no avail, so he told me to come off it and then come in to see him.When I saw him he said my hemoglobin wasn’t low enough for insurance to cover IV iron, but my Ferritin was low enough that some days I will feel fine and other days I won’t be able to lift my head off the pillow.He was completely accurate.Right now I’m on no iron, waiting for my numbers to go low enough to qualify for IV iron that insurance will cover. Now,for 2)we have a couple of possibilities as to what the cause may be.We know for sure that I’m bleeding too much from somewhere, where is the question.It’s either GI or Gyno.For the latter,I’ve been put on a stronger hormone therapy to control the bleeding and am going for an ultrasound.As for GI, which is slightly more likely to be the culprit, they’re looking for a slow bleed, most likely in the small intestines.My GI, Dr. M in Philly, wants to do a colonoscopy and endoscopy at the same time to look for the bleed and stop it if they find one.Dr. M wants to do the procedures first thing on a Monday morning and then have me admitted directly to ICU for a 5-day Ketamine infusion to prevent a flare from the procedures.We’re trying to set it up.Unfortunately, that’s not my main issue right now.About 7-9 months ago I found a lump in my right knee, which is the knee I had the tumor and bone removed from in 2009.At first I didn’t say anything b/c I would feel it and then I wouldn’t feel it again for a couple wks.I did finally say something to Jimmy, my PT, b/c if anyone knows my body, and what each part of my body feels like on a normal basis, it’s the man whose had his hands on it 3 times a week for 10yrs.He felt it right away which ironically put my mind at ease, that I wasn’t going crazy.I saw my bone tumor specialist and he too felt it right away.I had an MRI done and the day before I left for Denver, got a call from Dr. Lane explaining that there was another tumor.It’s in a different part of the tibia than the previous tumor.Because of how severe my RSD is and how quickly I found the tumor, Dr. Lane wanted to wait 3 months and then repeat the MRI.At that point(which is this month),he will compare the scans and determine if it’s an aggressive tumor and what the rate of growth is.These 2 things will determine whether they operate immediately or wait and watch it awhile, in the hopes that my RSD will improve.In the meantime, I have to be very protective of my knee.I’m no longer able to do cardio, but fortunately Jimmy’s come up w/ a workout plan so that all my weightlifting and exercises can be done while sitting or lying down.This has definitely caught us by surprise, both the tumor itself and the location of it.I can’t explain why, it’s not rational but I always become convinced that, “this was the last tumor,” after a couple years w/out one.W/ my medical history, I should know better, but I can’t seem to prevent the assurance that comes over me, which sucks b/c it makes it that much harder when a new tumor pops up.The flip side of having had all these tumors is that I know I’ll be okay.It may be a really rough road for awhile, especially if they operate now, but in the end I know I’ll recover, Baruch Hashem, that assurance cannot be broken or taken from me. One of the strongest feelings, most crucial emotions that someone with a chronic illness experiences, is hope. W/out hope, w/out something to latch onto that says, “you can get better”,depression is almost guaranteed to follow.Over the last year as my health has continued to decline, it has started to take my hope w/ it, little by little.W/ the anemia and then the tumor, not to mention all the angst over my situation w/ Dr. S, it began to feel like someone lined up all the hurdles on top of one another, leaving no room in between for me to jump over them. Then Mom made a new friend. Dr. Chopra, out of RI, is treating RSD patients w/ an experimental protocol called LDN(low dose naltrexone) and I’m now on it.He is graciously working w/ Dr. Datta so I don’t have to go to RI. LDN is being used to treat many autoimmune diseases, MS for example, as well as Crohn's disease and so far has proven to be quite effective. LDN is used to calm the Glial cells that are hyperactive in a person with RSD.“When you have RSD you have glial activation or Neuro Inflammation in your spine and brain.Glial cells, sometimes called neuroglia or simply glia,are non-neuronal cells that maintain homeostasis,form myelin, and provide support and protection for neurons in the brain, and for neurons in other parts of the nervous system such as in the autonomic nervous system.”(The Power of Pain Foundation Website).It takes 2-3 months for it to build up enough in your system to see significant changes in your symptoms. FINALLY, HOPE! Unfortunately, it goes hand in hand w/ an extremely strict diet, gluten free, casein(dairy)free, sugar free(including natural sugars)and vinegar free.I’m not a happy camper, but if it will help me to feel better, it’s a small sacrifice.I will keep you all informed of any progress, positive or negative. As for my family,we’re hanging in. Baruch Hashem, Mom is healthy(and just celebrated her b-day)and keeping the rest of us in check.Dad is doing well and fishing a lot.He once again completed his summer with a wk up at Camp Happy Times, the camp for kids with cancer.Charles is doing ok, still balancing multiple diagnosis and the treatments that come with them.He’s also spending a lot of time in the studio recording his first EP, which will be done soon.I ask that you pray for his continued good health. I also ask that you pray for my mom and dad, that they find strength when and where they need it.As always, I ask that you keep Melanie, Lindsay, Kyle, Margo, Debbie, Kerri, Alessa, Brandy, Matthew, Becca, Bob & Carol Steinat, John and all others who are fighting daily just to survive.May Hashem carry each of them through their own individual medical battles. Please keep my dearest friend Emily in your prayers too, as she’s recovering from major surgery.May she be comforted and surrounded by all the beautiful karma, love and support that she’s put out into the world, coming home to her each night.She continues to be my biggest inspiration! I want to thank you for keeping Steven Arthen in your prayers,I’m happy to inform you of his safe return from Afghanistan. At the same time, I’m asking that you keep our friend John’s son in your prayers(haven’t gotten permission yet to give his name) as he deployed to Afghanistan 3wks ago. May Hashem protect him and the men and women of his unit and bring them home safe and soon.Their selfless service on behalf of this country is and should be admired and appreciated, but can never be repaid.It’s a sacrifice most of us can’t even fathom making. The men and women of our armed forces are the true 1%, the rest of us, the 99% who are forever indebted to them and their families. Finally, the month of October holds a lot of significance for me, a lot of anniversaries.In Oct, it will be 14yrs that I’ve had RSD, nearly half my life. On Oct 17th, it will be 5yrs from my first coma. Baruch Hashem, Tracy has remained in remission and lives her life as she did before RSD, only with a great deal more appreciation. On Oct 26, it will be 11yrs since I had the tumor and lymph nodes removed from my breast. This surgery is significant b/c it caused the RSD to spread to my upper body and only then, did my doctors start talking about a neuro issue.Personally, that’s one anniversary I celebrate, one I’m grateful for.If you’d asked me 15yrs ago to describe my life today, there would be no similarities whatsoever to what my life has become.That being said, I am so very grateful for every single thing that has happened in the last 14yrs.My life has been so extremely blessed and I can say w/ great confidence that I have no regrets about anything that has transpired in my 3 decades of life b/c it’s made me the person I am today.It’s made me strong, given me my faith in G-d, my faith in my family and my faith in humanity.I wouldn’t trade one moment of my life, w/ or w/out RSD.I pray that you all experience life w/out regrets, b/c all regrets bring you is a waste of time and the addition of more stress to your life.Instead, we should all learn from our mistakes so as to improve our future and the futures of those we love.Thank you all for your continued prayers and unwavering support for my family and I. I’m adding some new pictures, so be sure to check the photo gallery."
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