Copyright issues

Hey everyone!

Just a heads up, this medical blog is protected by copyright. If you wish to use my images, or my story you must contact me and ask for my permission. This has become a huge issue recently with my photograph being stolen and used on a medical site that is full of inaccurate information and is not even related to my SJS story.

I love that people use this to help others, and share it with other survivors, that is great! But it is not great to see my photographs used on a site with inaccurate information.

What I post on this blog is my story, my opinion, my journey to recovery. It is not to be used for medical advice, you should ALWAYS consult with your doctor. I am here to give my experience and share my extensive SJS knowledge with others. Not to give medical advice.

Thank you for your understanding and respecting my story as a survivor of this horrible condition.

Christine

Updates

              A lot has changed since I look back on all of my blog posts in the past. For a while things were not going as well as I hoped, so I had a hard time keeping anyone updated because I just was done talking about what happened. Now, I am in a completely different place a year later and I am excited to share the information with everyone. As some of you may remember last Christmas I was starting the insurance fight for IVIG- Intravenous Immunoglobulin. This fight went on for months, and months, and after 8 rejections I was finally approved. Since IVIG had never been used for POST SJS symptoms it was a long road to get it approved. I started these infusions in March of 2015, and in April of 2015 I was about back to myself. I did have some serious side effects like a battle with viral meningitis from the excess white blood cells in my spinal column. But I was fine once my body worked it out; I just had debilitating nausea and migraines for a few days. After two months of one brand they switched me to another brand, Gammunex of which I had minimal side effects from. At this point my health was about 95% back to where I was pre-sjs. My eyes had totally cleared up to the point I no longer wear my PROSE lens, my skin did not redden, I had no more ulcers anywhere, and my energy could be compared to the energizer bunny. I could not believe it. I started losing all the steroid weight I had gained from the hospital, because I was able to actually move my joints again. I was running! It was fantastic. I also started sharing my experience and helped other SJS survivors start the advocacy process and get to the doctors that would help them get IVIG, because it worked so well for me. But, I then switched doctors to see this new immunologist who I do love; but she switched me to sub-q IG which means that you insert a bunch of tiny needles into your skin and infuse at home. We did this because the Gammunex started causing large blood clots that were painful and dangerous in my arms so the sub-q was the next option. 

Well in the background of all of this I had moved out on my own back to Boston, and was not only working but also back in school for my masters in medical social work. I also have started dating again, which for anyone with a chronic illness you know how that goes. It has certainly been an adventure. But, with the home infusions it was great because I was so busy with getting my life back I had the flexibility to do it on my own in my own schedule. However, the first brand we tried did not work and I started to flare, and freak out. The ulcers came back, and the exhaustion set in. So after a week of advocating on the phone with the nurses we switched brands and doubled the dose to a medication similar to Gammunex but sub-q. The downside to this treatment is that it is 8 needles, and it is infused weekly. So I started these treatments and it seemed ok to start, my flare went down but never really went away. Then I started feeling faint every time I infused. This could be because as another side effect I had serious GI issues that lead to me losing even more weight. So after talking it over with my immunologist I am going back to IVIG the middle of January 2016. Since clotting is a concern we might have to have a port-a-cath placed but we are going to try without it and see! I know the Gammunex worked incredibly well for me so I am actually happy to go back to that, it is just a bummer because two days a month I spend 5 hours each time in the infusion room which is not fun. But it works so it will be nice to feel confident in the treatment again.

So we will see! I have received a bunch of emails and phone calls about the IVIG and as always I am more than happy to talk to you anytime about it or help advocate for it. I am also more than happy to talk about my current SJS issues off here if you want! Now that I am getting my masters in medical social work I find I use the skills I learn in school almost daily, and that is a great feeling. It also helps that I work at Mass Eye and Ear and have access to the best and most experienced doctors on SJS. I hope you all have a happy holiday and as always please never hesitate to reach out!

Thoughts on Christine's SJS experience

Since leaving the hospital, my sister Christine has been the primary author to this blog. I have been thinking about making a guest appearance for quite some time now, but it has taken me awhile to gather my thoughts, consider my content, and choose my words. Recently, Christine and I have been discussing some exciting plans for this blog, so you may see more posts by me in the future. Before I launch into my reflections of Christine post-hospitalization, I wanted to thank all of our readers for following this blog and reaching out to Christine to share your own SJS experiences. We have been truly amazed by how many people this blog has reached, from all over the world. We hope that sharing her story is helping others and their family as they suffer through what is an incredibly horrible and unfair condition.

Post Hospital Life

Christine’s one-year anniversary of developing SJS is just around the corner, coming upon us in early April. She is doing her best to adjust to the changes SJS has made to her body, her lifestyle, and her soul. She is incredibly fortunate to have the support of a family who cares about her immensely and a community of SJS victims she has met online. After leaving the hospital, Christine first lived at our grandparent’s house with our mother and stepfather so that she could be close to her hospital doctors. Her health improved, and her doctor’s appointments became less frequent. She moved to our mother and stepfather’s home, where she stayed and considered her next steps in life. A job posting for a sexual violence advocacy job in our hometown caught her eye, and she took a leap and jumped on it. In September, she began her new job and independent life.

One thing that always comes to mind when I think about my response to what Christine went through is something my mother has said to me over and over again “you will never understand the love a mother has for her child until you have kids of your own.” Because I do not yet have children, I cannot dispute this statement and can only imagine it must be true. However, I sometimes wonder if I come close to understanding what my mother feels in my interactions with my siblings—particularly those with Christine. As a rule, I am not a very emotional person. I am an engineer, and have the stereotypical logical approach to nearly all things in life and the noticeably steady emotional response to both positive and negative situations. However, the one place where I break down is when the people I love most are suffering. Even writing about this now, my eyes are welling up with tears.

Needless to say, Christine’s SJS experience has been emotionally difficult for me. I feel bad even saying this because my own emotional pain pales in comparison to what Christine went through, is still going through, and will be struggling with the remainder of her life. But writing about this is my way of telling her how much I love her, and of reaching out to the family and friends of other SJS victims who undoubtedly understand what I’m saying. I recently started a new job and my driving route to work is almost exactly the same as the route I used to take each day to visit Christine at the hospital. Every morning I am reminded of what my sister went through last spring and my own emotional wounds still feel raw.  When I think back to this horrific time in her life I am usually seized by a mixture of fear, sadness, a sense of unfairness, and relief.  I haven’t told Christine that I think about what she went through, and is still going through, every, single, day. Many days I am almost crying as I drive to work I am so overwhelmed with my memories. Every time I see an ambulance I am reminded by the terrifying experience of calling 911 from my apartment when she couldn’t breathe because of her swollen tongue and the sloughing in her mouth and throat. I have had to change my phone ring tone and notification noise, because every time I hear my old ring or text message alert I feel a jolt of panic from those nights and mornings when I was anxiously awaiting any news from the hospital. It’s a constant reminder to live in the moment and hang onto the things you love most.

Even though Christine’s skin has healed, she has become a new version of herself, both physically and mentally. She will likely always have some scars or discoloration on her skin from the full body rash. She still struggles to lose the weight that her steroid treatment caused her to gain, and to rebuild the muscle that she lost from six weeks in a hospital bed. Because she had a very diligent and caring ophthalmologist during her hospitalization, her corneas have escaped undamaged. However, she does have significant scarring on the inside of her eye lids, which needs to be carefully monitored to ensure it does not damage her cornea as time passes. Her tear ducts are scarred closed, which helps keep her eyes moist but also means her eyes are constantly tearing and she needs to carry a tissue or handkerchief at all times. She lost all of her eyelashes in the hospital, and I will always remember the day she called me crying to tell me that they had all fallen out. Her fingernails and toenails have only sort of grown back, and will never look the same again. She loses hair in clumps. Her tongue is scarred and she often has small blisters in her mouth—something that she and her doctor are currently exploring via an allergy panel. Christine’s gynecological involvement was extensive, and there are lasting effects there as well. There is constant fear of an SJS reoccurrence and skepticism of all medications. Just a few weeks ago she developed what turned out to be a harmless rash, but prior to seeing the doctor we couldn’t help but be concerned.

Despite all of this, Christine still finds opportunities to laugh, to dance around the house to her favorite tune, to wear makeup and fancy clothes, to love her dog, to hang out with her family, to make a difference to all of the sexual and domestic abuse victims she works with on a daily basis. I’m not going to lie and say that my sister has been the pinnacle of optimism.  When she first came home from the hospital, she was downright nasty to be around. She was incredibly angry and bitter about the hand she had been dealt in life, and she had trouble finding anything bright in her future. She tried very hard to be optimistic, but it was understandably difficult to do. I do not blame her for this retaliation. She pulled through, and has reshaped her life and learned to enjoy some of her favorite things again. She still has her bad days, when it’s hard to overcome the immense feeling of loss and unfairness that SJS has left her with. These days are particularly hard for me as well—naturally, I want my sister to have everything she has ever dreamed of having and to live a pain-free life. While she has a good life post-SJS, it is for sure a different life than she envisioned herself having.

Christine finds comfort in spreading SJS awareness and talking with other victims. Constantly, she says she wants to do more to further SJS research and to work with SJS sufferers and their families. She wants to share her story, and the story of others. She wants to help advance medical knowledge of SJS to help prevent further cases and improve treatment. Obviously, not all of these things are easily achievable. However, she and I are currently exploring ways she can make a difference. When I think about SJS awareness and wanting to spread her story, I always think to myself “What makes this story of pain and suffering any different than anybody else’s story? People her age are suffering from diseases, cancer, and other things all the time.” I’m not sure that her story really is that much different—tragedy comes unexpectedly and objectively to many people in this world. However, one clear way in that SJS is different from many diseases is that it is extremely rare and very poorly understood. It also attacks quickly, without warning, and is devastating to the body. I am proud of Christine for rising to the challenge to make her mark on the world and in the SJS community by raising awareness and doing what she can to further scientific understanding of SJS. And of course, I love her to pieces and am thankful every day that she survived.

Updates

I know I know. I need to keep this updated. I have received so many emails from people about updates and information it is terrible I have neglected this so badly.
SO
Here I am. I want to make this more educational too. Not have this be only about me but SJS in general. I will keep updating on my progress but I have been asked so many times for information about SJS I feel like I really should be including current events stuff too. Sound good?
First, a little update about me. I have been asked to post new pictures of my scars. To see how they look after 6 months of being discharged from MGH. I will try to do this. But as I live alone now I need someone to help me take them. But I will do that, I think it is so important for others to know that they do start to fade, and you do start to love them. They are constant reminders of your perseverance to survive. My eyes are still the same they have not changed since the last visit. I am still using steroid ointment at night on them which is wicked annoying and makes me wake up with my eyes glued together (losing more eyelashes). I honestly can not say that this makes a difference. I think it helps with the itchiness of the scarring because that was really annoying. I still can not really wear any makeup because it makes my eyes tear up like crazy. The tear ducts are still scarred shut and my eye doctor said I am not a candidate for the surgery to open them because the constant tearing is what is helping save my corneas. So I am learning now to just get over and on with this. The biggest issue that I am worried about is that my vision being so bad and my eyes watering so much it will really affect my skiing this winter. But honestly, I am about to ski so I think I will just get on with it.
My skin has been hurting a lot recently, the scars feel like they are on fire. I think it might be the weather changing it is freezing here where I live now. So ill keep that updated as well as time moves on.
My finger nails are still a mess, peeling and cracking away but there are two that are finally looking normal! So that is great!
My mouth is still very bothersome, when I drink anything bubbly it is really sensitive and painful. But again, it is ok. I went to the dentist and they were not to worried about how my teeth look at this point, I took amazing care of them in the hospital at the cost of my mouth to keep them clean. But they are very hesitant to do any kind of work on them because of any risk of infection or introducing any new chemicals to my body.
My hair is growing back slowly, I actually cut 7 inches off because I was so sick of it being dead. So that was exciting and now I have a fresh new look to enjoy.
My female problems again, if you want to know more send me a private message. The news was not good though from my last visit. Honestly the SJS seems to have affected this area of my body the worst.
That is all I am thinking of right now. I will edit it if I am missing something.
Also, I want to mention that it is not all doom and gloom. I have been able to start a new job that I love as a sexual violence specialist and that has been so good for me to work with people who are also going through something life changing and terrible. I also continue to have the most amazing family (Dad, Caroline, Alex, Mom, Sam, and everyone else in my family) and friends (especially those not in this country). I am SO lucky to have this support network which is why I am so passionate about creating this for others who may not have the luxury to call their sister and cry about how they are feeling. Or know someone who sat in the hospital next to them as they fought for their life. Or just a friend who does not know how to help. That is where I want people to feel conformable to reach out to me. While I am no expert, I did go through it and have a wealth of family and friends who can also help give advice of their experience. I also have a great network of other survivors of SJS who are just amazing that I could ask to pass information along to people too.
Moving on to other things though.
This is a new article about yet another drug that has been recognized to cause SJS:
http://www.fda.gov/Drugs/DrugSafety/ucm377204.htm?source=govdelivery&utm_medium=email&utm_source=govdelivery
It has been so interesting the emails I have been receiving, the drugs that have caused all of your SJS are totally different. I have not herd of any that are the same. This is both frighting and frustrating at the same time. It really just pisses me off that they are not researching this more A and B that they have NO IDEA WHY WE GET IT. I swear to god sometimes I know more about SJS than my doctors. I go in and teach them about it. How annoying is that? They dont know if it will happen again to me what will cause it what caused it in the medication I took to begin with, how to even test for it and the list goes on and on. How can we as a group make this more of a forefront in research. How do we get scientists and doctors to care about this? I think about this daily and if anyone has any ideas please let me know.
My younger sister who is totally amazing is doing her senior project on SJS to raise awareness. I told this to my new doctor who said she wants to go to learn more about it. I think that things like this need to happen to not only get more doctors educated but also get the community educated. Yes it is rare, but if you can help one person be spared the pain and misery I had to endure it is worth it.
I also am wondering how do we get more of us together as a support system. I have this amazing friend from England who has been above and beyond supportive to me and I hope I have been that for others who have been emailing me back and forth. But how can we be more active and supportive and reach more who could really use someone to talk and relate to. I guess how do I get my blog to become more mainstream and educational? Any ideas?
I just want people to know they are not alone, and honestly if I am making one person feel better from reading my blog well then that will make it worth it to me. No one should have to go through what my family and friends and I did. No one should feel alone when struggling with SJS and the horrific aftermath of it and the effect it has on your life moving forward.
NO ONE.
So here I am. Just one person, but I hope that somehow I can help others who can help others and then SJS will be better known. Maybe this is to idealistic but I know from the amount of emails I get weekly that there is a need for this. There is a need for support. And I will do whatever I can to be that shoulder to lean on.
Thank you for all your continued support and your emails. Please NEVER think twice about emailing me with a question. I am here to do whatever I can to help even if it is just reading my day to day experience in the hospital. Stay strong, stay positive, and let me know if there is anything I can do to help.

Changes are my new normal

As the 5 month anniversary of being hospitalized for SJS is upon me, and my 25th birthday I can not help but reflect on the past months. Never before in my life has so much changed. My body, my home, my job, nearly everything but my family, friends, and dog. As I often feel so much anger towards what happened to me and constantly wonder why me, I am trying very hard to move out of this anger stage to the finally being able to move on. But before I do I really need to thank everyone in my life who helped me get to this point. My mom and sister who single handed (along with the nurses) saved my life. I was NEVER alone, I always had either my mom, sister, or my dad there. My friends who were always visiting me, and my friends who couldn't sending me the most encouraging messages. I would never be where I am today without all of this continued support. I am started a new job that I am so excited about, I moved back to my hometown which is something I have wanted to do for a while, and I have moved out on my own (kinda). I am so lucky to be taking these next steps and celebrating my birthday tomorrow. I would NEVER have made it to this without this support system. I know I wouldn't. Thank you to each and every one of you who called me, emailed me, donated to my website, wrote me letters, sent me flowers, visited me, skyped with me, and just loved me unconditionally while I was the biggest pain when I got out of the hospital (Mom, Dad, Caroline, and Tommy). I love you all so much.
I move on with a new identity which I have learned to embrace. I was talking to another survivor last week about how so many people stare at my scars. I asked one woman if she would like to know what happened to me since she was staring. I am not scared to talk about what happened to me, in fact it is the opposite. I have found that raising awareness is the only thing that makes me feel better about it. So like I always say please never hesitate to contact me, I love talking to anyone about SJS.
SJS can be a death sentence, or TENS which is what I had. But there are also many survivors out there. My younger brother told me to include this in my blog because when he was originally researching SJS he was horrified when he could not find any stories about survivors. So we are out there!

Updates: My fingernails are back to falling off and splitting again, along with my hair. Skin is unchanged still scarred and dark. My eyes are being carefully monitored by my amazing eye doctor in Boston as the scar is growing and more caratin is forming on my lids. Eyes are still super sensitive to lights and I even have to wear my sunglasses inside sometimes now. My mouth is still healing, drinking anything with bubbles in it kills my mouth and even tooth paste and gum the mint burns it. My lips have recently reacted to something, a new allergy but we are not sure what to yet. They have swollen up and blistered on the inside. This was extremely alarming to me as it was a stage in the original SJS flare but it looks like it stayed isolated in my mouth. As for the other areas, well they are healing slowly too. I just started PT so that should help.
I also wanted to start including some news that is about SJS in these posts. Whenever I see anything about SJS I post it on my facebook but I also thought it would be nice to include it on here.

http://www.cbsnews.com/8301-204_162-57596731/fda-wants-warnings-on-acetaminophen-over-rare-risk-for-serious-skin-reactions/

http://www.cbc.ca/news/health/story/2013/09/06/sutent-skin-reaction.html

http://www.clarionledger.com/article/20130706/NEWS01/307060018/Miss-Mississippi-contestant-beats-death-s-call

and the most infuriating to me:
http://www.lawyersandsettlements.com/articles/sjs/stevens-johnson-syndrome-sjs-79-18869.html#.UitwGY1OS8A
(a note about this we should all be enraged about this decision. Our government refuses to hold drug companies accountable for their drugs. As someone who had SJS from a generic drug I am just appalled. This is NOT ok. When our insurance will normally only cover generic drugs what are we to do?)


I think it is wonderful how many people I have got emails from recently. Survivors and friends and family looking for information. I LOVE this. Please always feel free to email me with questions or anything at all. It is always such an amazing feeling to know you are not alone. I have appreciated so much the emails I have got from survivors 2,3,5 years out of having SJS. Your emails mean so much to me and the support is just fantastic. I have not felt alone in a long time, because I have so many people to turn to if I need support. So thank you so much for that.

The road of recovery

Recovery is a strange thing. It constantly amazes me how my skin has healed. I look at my body every day and am in awe of what the human body can do. I am covered in scars, but as I keep telling people who email me asking about SJS I am not afraid of them, or disgusted by them. They remind me of what I have done, which is survive this terrible syndrome. They are everywhere though, and I mean everywhere. But the more I heal the more they look less alarming and more tolerable.

I went to see my eye doctor Thursday and my lids are scarred and I have some keratin growing near my scared shut tear ducts. So that is something we will be keeping close tabs on because with that scarring could lead to cornea damage if it is not caught early enough. If it does start to cause an issue I will have to get PROSE lenses in my eyes which will protect them from further damage, but we will use that as a last resort. My eyes are still extremely sensitive to the light, even light inside sometimes, so I am always wearing my sunglasses. But I will see my doctor monthly to make sure my eyes are not harming themselves which is fine, because each time I go I learn more and more about SJS from my eye doctor who is wicked amazing.

In other news, I am trying desperately to lose the weight I gained from the steroids. My older sister made a good point to me today though, that the steroid “fat” is what saved my skin. Which is true, and when I think about it like that it makes it easier to cope with. But I am her maid of honor for her September wedding so I am not pleased with how hard it has been to get the weight off. I was on high doses of steroids for three and a half months, and that means that my body basically inflated. I am honestly more self-conscious about my weight than my scars could ever make me. I have always been active and have had a very athletic body so this is a daily struggle for me. But, now that I have been cleared to start WORKING and being more active I can finally start getting back to my normal weight. (Big event that happened was the getting cleared to actually start working again) I just really understand now what the doctors told me in the hospital though about steroids being a messy way to treat SJS but honestly I would never have expected to look the way I do from them.

My nails are finally growing back! They are very thin and keep splitting and breaking but they are coming back! What is really weird though is that now, two months later, I am losing some of my hair and my toe nails are falling off! I thought that once the damage was done it was done, but apparently it can happen after. My dermatologist said that because steroids inhibit the hair anagen growth phase even though I am off the prednisone I can still experience something called telogen effluvium. This happens because my hair had to cycle though its stages before actually losing it, it has a delayed onset which is what I am experiencing now three months later.  So this is something new that I am dealing with now but minor in comparison to other issues. I still get sores in my mouth, and my tongue is STILL healing. It still hurts when I drink carbonated things or even brush my teeth with mint toothpaste.  And, I have one of the most scarred mouths my dermatologist has seen so that is pretty impressive right! Oh, and lastly, my eye lashes are coming in strong! I had to have a few pulled out when I was at the eye doctor because they were growing in, but for the most part they are coming back, which is great news.

Finally my OBGYN issues.  I am a little hesitant to right about this on here, just because it is such a personal thing. But because it creates huge issues for women who have SJS so in general I will write about it in future posts but just not today.

So like I said the recovery process has not always been smooth. It has its ups and downs, and I get good news and I get some not so good news. I never would have guessed I would ever have to experience something like this. I never would have guessed that I would not be working at Mass Eye and Ear’s ER right now, I never could have imagined the constant support and love I get daily from people reaching out to me from this blog. I am going to continue this blog, because the emails I keep getting with questions for me about SJS and about my experience are amazing to get. I love sharing what I have been through with anyone especially if I can help make someone less scared, lonely, or mad. Because believe me I went through the anger stage. But what is important to remember is that this happened, and I have chosen to do what I can to make a positive from it. I do not have good days all the time, and in fact I have had some pretty terrible days on this road to recovery. But what matters is that you move on, I reply to some emails from my readers, I just pick myself up and keep going. In general I think this experience has seriously changed how I look at life, and though the path I am on now is not the one I would have ever expected it is just a testament to life’s unpredictability. And you know what, I think I am ok with that.

Update

I have finally been cleared by dermatology! They only need to see me on as needed follow ups! This is great news for me! All of my fingernails have fallen off and my skin is still full of scars but I do not need to go back unless a problem arises. My fingers now feel so weird now that there are no nails on them, but hey I do not need to continually tape them down anymore so that is good. My mouth is still healing, and I get sores still which is so strange to me but normal according to derm. She also said that my mouth is scarred and that's just the way it will be. My skin also has issues controlling my body temperature. I get very cold or very hot, and my body sweats at the weirdest times. Finally, the skin on my feet is so sensitive! I used to be able to walk around barefoot everywhere, but now the smallest little pebble I step on is painful. There are still lots of other medical issues I am struggling with including my vision and the scarred shut tear ducts, among other things but I will post about those as I get more information from doctors.

I am now finally off the methadone successfully! The weaning off was painful and jeasum crow the withdrawals were nasty but I am finally doing better on that front. I am also off the lyrica which is great news because my memory was affected by that. My memory I would not say is much better but its getting there. I am starting two of my pre recs for nursing school next week so that hopefully will be ok with my lazy brain. I am doing the classes online because since I had to move back in with my parents in Maine while I recover it is hard to commute for doctors appointments and classes. So hopefully they go ok! 

I am still working on a SJS foundation here in Boston, I am hoping by continually posting on here with my recovery I am able to be a resource for other SJS patients, family, and friends. The most frustrating thing for me is that there is a lot of questions for my health. No one can tell me what will happen with my vision or body because each case is different and no much research has been done. But what I can do is raise awareness and educate people about the symptoms of SJS. I wish that the doctors in the first ER I went to knew about SJS because I would have started treatment two days earlier. So doing anything I can to educate is my new goal, well and nursing school.  Keep the comments coming and suggestions! I can use all the help I can get, and thank you all for your great ideas! I am considering doing a fun run or something to raise awareness. In 2009 I biked across the US to raise money for cancer, while I can not do something that huge it would be great to do something to spread the word about SJS and have some fun! 

Thank you everyone for your continued support and love!!!!

SJS Pictures

NOTE: These images are protected by copyright. This means that you may not take or share them without my permission. Anyone who has had this debilitating condition knows all too well how vulnerable we feel having our story shared. While it is hard to have these graphic images posted online of myself, I would hope that any other SJS survivor or family member would respect my wishes. It is critical for other survivors to know they are not alone, and that they will heal. I refuse to take them down as they have helped so many others. 

Vacation!

A family tradition is going to Moody beach in Maine each year. This year it has been particularly special since I was not sure I would be able to be here a month ago. I have had to make sure to stay covered up from the sun but I have been able to sit on the beach and hang out with my Dad's side of the family. I have been walking daily, not by choice, my dad basically drags me on these walks but I am glad I have been doing them. It is crazy to think how far I have come in a month. Last month I was on crutches still and now today I walked 2 miles with my little sister and Dad. I was feeling pretty proud of myself. On the second day I was here I had my favorite food, fried clams and guess what. My taste buds were not happy. They tasted disgusting, so that was not very fun. I keep getting little surprises like that to remind me that my body has changed from the SJS. I am not sure if this is something that will go away or if it is permanent but I can still eat lobster so at least that is good! I have also been in contact with Jean who started the SJS foundation and I learned a lot from her about her family's experience and other survivors of SJS. She put me down as the contact person for Maine and Mass so I am really excited about that and talking to other people near me about SJS. It is hard to talk about, but telling people my story feels really good. From that I have kinda decided to turn this website into more of a informational website so that anyone who is a survivor can read this and learn from me. I am not sure yet how I am going to do this but I will figure it out.
As far as how I am doing, I had the apt with OBGYN and learned that I will be able to have kids in the future (she thinks). This is HUGE! The scaring is healing and on that I am doing really well. That is all I had for apts this week thank god since I am in Maine, that was a long drive. My eyes are still running constantly, and I am still on the steroid ointment at night. No progress has been made, they are still extremely sensitive to light and are very blurry. I went down on the pain meds Wed so my body is furious with me. I never mentioned it before but I will put it on here now for others to know. I was on morphine in the hospital but because I was in there for so long and in pain for so long my body got used to it and it stopped working. So they put me on methadone, which is a really scary painkiller as I have learned. It has made my short term memory disappear and made my body, not mentally, absolutely addicted to it. That is why when I tried to stop it cold I had such a bad experience and the withdrawals were dangerous. So I was put back on it and am on a "safe" wean now.
My mouth still can not tolerate anything minty or bubbly, but it is healing for sure. Things taste different but my taste buds are growing back, but my tongue is very scarred. My skin is itchy. Very itchy. But that is also healing, I am just covered in scars. The weight is slowly coming off, the steroids really killed my body I had worked so hard on, but I am slowly getting it back. I keep saying it is like I am in someone else's skin, it is the strangest thing when I look in the mirror. My fingernails are almost all off, I only have three left to go! I will hopefully be able to go back to work soon!  I am walking everyday to get my stamina up so I can tolerate my job where I was always on my feet in the ER. Fingers crossed that will be sometime in the next month or so!
So that is the update, this will be changing slightly as time goes on to be more educational about SJS and hopefully I will be able to get a support group together of SJS survivors to meet!
If anyone has any ideas email me! christinesjsblog@gmail.com I would love to hear if people have done this. Also, if anyone has any questions at all email me! I would love to answer any that people have!

SO.
Super frustrated today. Yesterday I drove to Boston because I was supposed to have an apt with an OBGYN today. Well I am just about to leave at 8am to drive into MGH and I get a call saying she was not able to make the apt. This all sucked because I drove down from Vermont to see her but that is ok! Instead I went out into the garden with grammy and picked some flowers and then drove to Carolines to get her dogs. We are going on our family vacation to Moody Beach next week so my mom is watching them for her (it is with my dads side of the family). I am really excited to go on this vacation, I look forward to it every year and I was so worried I would not be able to go when I was in the hospital. So it will be really special. I will not be able to go in the sun because of all the burning and pain but I will be able to read and just hear the ocean which is what always heals me. I do not know how but something about the beach is just so soothing for me, and always has been. The past week was good, I got to visit with a few friends from home which was great! I got lunch with my two best friends from high school and then my other friend came over for a visit. It was so nice to catch up with people and show them how great I am doing! Medically my finger nails are driving me crazy. They hurt so badly and they are like half off, they are stuck to the top of my finger. So they get caught on everything and I have to tape them down now. My eyes are still watering like crazy, but I have this steroid ointment that I am putting on at night so we will see if that helps at all. I am still on the pain meds but we are on a weaning plan so I am ok with that. Anything to avoid what happened last time with the withdraws, because that was miserable. Anyway, that is it for right now. I am working on finding out how to start an SJS foundation, so if anyone has ANY idea how this works can you send me a message? I am doing lots of research and am finding dead ends and websites for survivors only in Canada. That doesn't help. I want to get a group of us SJS survivors here in the US so we can talk and share our experiences and help others who are going through this horrific thing. Or if anyone reading this is a survivor please send me a message! I want to get the word out there that I am looking for a support group to start. My ideal thing would be that we have cards or something that we leave in doctors offices or give to hospitals to give to SJS patients so they know they could call or email and ask questions and we could create a support system.
Anyway that is what I am spending my time doing now. Any help or ideas would be awesome! If there is any way I could help someone and make this less scary or overwhelming I want to do that, because I know my family and I could have used this big time.
I will post some pictures from our vacation next week when I am at the beach :) Not in the sun of course.

So,

About that getting better at blogging thing. 

A lot has happened since the last time I was on here. One of the biggest things to happen was me moving home to Vermont. We left on Sunday and I have been home ever since. On Monday I spent the day with my mom and worked on thank you notes. In the afternoon I went for a small walk and lifted some very light weights with my mom. I finally think I have decided what nursing program I am going to apply to, and have found the place where I start taking my pre recs online. So I will be starting that soon, and starting to work on my application. I was debating for a while if I should do a BSN which is a bachelor’s of science in nursing which is an accelerated 18-20 month depending on the school program, or if I should do a direct entry masters in nursing program. I think I have finally decided just to apply to masters programs. So I have been researching programs all over and I did a bunch of that during the day too. Tuesday I was back down to Boston with my younger sister Alex to doctor appointments. She took the whole day and drove both there and back just so I could see my doctors. It was so nice of her. I saw derm and they said that my skin will eventually fade, the finger nails will finish falling off, my hair will grow back, and the weight from the steroids will come off EVENTUALLY. Wonderful. So who knows when that will happen but EVENTUALLY I will be normal again. I actually had been corresponding with my amazing primary care doctor too because I was not to sharp and decided to go off my pain medications cold turkey which resulted in terrible withdrawals for four days. Never ever again. So she was accommodating enough to see me and to make a long story short I am back on a very low dose of my pain meds again. So that is good, on the bright side my shaking and throwing and chills have stopped on the downside im back on the pain meds. On Wednesday I actually went for a walk with the dogs on the dirt road by our house. Neo was thrilled to have me walking him again. OH I haven’t even mentioned that yet. I got my dog back on Sunday!!!!!! My step dad was SO amazing and took wonderful care of him for the 8 weeks I was in the hospital and then at grammys. So on Sunday we stopped by his house and I got my dog. He had just given him a bath too, so not only did I get my dog back but he smelled good and was clean. Neo and I have hardly left each other since. He follows me everywhere I think he is worried I might be leaving him again if he doesn't  Back to Wednesday, my childhood best friend came over after work so that was so nice to catch up with her. We talked for a long time and then I had dinner and went to bed. Yesterday my dad drove me to Boston for more doctors appointments. But before I was able to have lunch with a coworker which was SO nice. Then I was able to go see my work family and visit for a bit. That was great! After, I had an eye appointment the first of many to come apparently. I learned that my eyes have a lot of scar tissue on them and actually my tear ducts are scared shut, hence the watery eyes all the time. So he said I will be very closely watched and then a whole bunch of other stuff. Apparently there is a chance I could lose my vision in the future so I have to make sure I do not miss or stop seeing him for a while. Yeah, fun huh. After I saw my primary care doctor. We got home so late last night, I didn't get home until 10 and I went right to bed. So that is pretty much the scoop!

I am clearly not very good at this blog thing. I have not given an update on here for a long time. I will try to be better about this! Since the last time I blogged medically not much has changed except I am totally off my pain meds. Which is pretty exciting. I just decided the last week that enough was enough I want my life back, and I weaned myself off of them with the help of my mom. It was not easy they are right about how addictive they feel to your body but I want to be able to drive, and have a glass of wine with my friends, and take a step closer to independence so I used that to be able to stop. The pain doctors were really impressed so that was pretty cool, and they said they are pretty much done with me unless the pain in all of my joints does not go away. They recommended I “urgently” see a rheumatologist because all of my joints hurt. Like down to my knuckles and toes all of them hurt. So I am working on that currently. As far as other things go I think I have caught a stomach bug, I have been really sick all day starting last night. But hey, on the bright side I walked around a store today without my crutches!!! I was also out in the sun without it burning to the point of tears! Two good things outweigh the bad today and each day I am getting stronger and stronger. Backing up though, on Wednesday I went to my amazing aunts house for her birthday where we all had dinner and cake together. My Dad drove all the way down here for the night Monday to take me to my doctor’s appointments Tuesday (did I ever mention how amazing my parents are?) which was so fun. We spent the day together and went to the grocery store. Also, when I was at my appointments this week I used my crutches walking all around the hospital which is a very long trek. So that was another accomplishment. Then Thursday I saw the pain people and that leads us to today where I walked without my crutches, got a stomach bug, and melted in this ridiculous heat. That is all I have to report right now. I will try to get better about keeping this current!

I am not even sure where to begin. This has been one of the best weekends I have had in a long time. I got to not only spend tons of time with my family but we went out and got to do so much! On Saturday we started the morning off like old times. When I used to live with Dan and Purvi my aunt and uncle, we would go to this bakery called Perfectos on the weekends and get coffee and muffins whatever. So on Saturday I bugged Dan to go, and we had SO much fun. We all got breakfast and coffee and just sat there like old times. It was seriously awesome. Then we went home showered and I decided SJS is no longer in control of me. I put on one of my favorite dresses, put on makeup, put on my new shoes, and off we went in the car with Purvi and the kids headed to pick up Ruby and drove to the aquarium. I have never had so much fun there. We went around to all the exhibits and saw all the aquatic life we have all seen before but it was like with renewed eyes. My little cousin, Anika, kept making sure that I had enough room with the wheel chair and the other girls had fun helping me navigate too. I swear I smiled the whole time I was there! After we went home to a steak and salad dinner cooked by Tommy and my uncle Dan. We chatted until I was almost so tired I was sleeping and went home to bed.

On Sunday we slept in a little and then decided to go to Maine to see the new house and to go to my my dad's side of the family's favorite breakfast place’s  Amore Breakfast. So off we went, Mom, Tommy, Ruby, and I to go get breakfast. We had a great time on the drive talking about the house and planning stuff. Then we got there had a little wait and then had breakfast. I had lobster eggs benedict which was as always amazing. After we finished breakfast we went to my favorite place in the WHOLE world other than Burke Mountain. Moody Beach. I was able to walk on the beach for a little bit, thank god for the rainy day there was no sun. We did take some pictures but they are not very good so I don’t think I am going to post them. But just getting my toes in the sand of that beach was healing for me. We stayed there as long as my skin could stand and then off we went to sign some papers for the house and then headed back to Massachusetts. We got dinner at the Chateatu and then came home and I went to bed. Seriously, perfect day or what?

Today was really relaxing. I have cut my pain medicine in half now so I really needed a day like this. Recectnly I have really been struggling with pain, I am constantly in pain all day everyday. But instead of taking any pain medication I have been trying to medicate with friends and family which try as I might isn’t working as I planned at the current time. SO, I am waiting until Thursday when I have an appointment with Pain to see what my options are. Anyway, today I relaxed and then went to the movies to see the Great Gatsby with Grammy and Ruby. I was not a huge fan but we had fun. After that I went to Dan’s for dinner and now am sitting at home writing the blog and starting my thank you notes. Pretty fun night! So that is the scoop on my end, had a pretty amazing three days if you ask me huh? I am one lucky girl. I have a new challenge. Take one day this week when you wake up feeling like meh this is a really crappy day and do what I did. Dress your best, wear your makeup (or not), and grab your confidence and totally take control of the day with a smile and a positive attitude. It was so empowering to do that for me, and did I ever take control of that day! Sometimes all it takes is one small change to change everything else. Give it a try, what could go wrong?

Today has been such a great day. Well let me back up, yesterday was a great day too. I went to lunch with my friends from work Rebecca and Shanna to this place that was amazing. Shanna drove us to North Reading to this cool new place. We all got burgers which was awesome since my mom is on a vegan kick. After lunch we went and got ice cream and got to catch up. It was so nice to sit with them and just act like a normal person again. It made me forget what was going on medically and everything. So thank you so much you two for making my day so much fun. After I spent the night with mom which was awesome, as much as I love Tommy it is nice to have some Mom time. I went to CVS ALL ON MY OWN with mom waiting in the car. I was able to finagle my way around inside getting things with my arm crutches and holding onto things so I could pay. It was awesome! Then we went to whole foods where I proceeded to drop numerous things on the ground including my arm crutch once when dad called. But hey I am learning how to use them still. So we went to whole foods and got stuff to make this vegan pizza (gross) but it was actually pretty good! Mom did a great job. Then I sat with grammy and mom and talked for a while which was really nice. We talked about some possible plants for me for the future like where I am going to live and whatnot. Pretty stressful stuff so I am taking it one day at a time. We did have a little medical issue yesterday that still has not been resolved but after talking to the doctors hopefully it is nothing to be worried about. But it was pretty scary.

Then today, mom was gone all day so I spent the whole day with grammy pat. My one goal of the day was the make two people smile. That was it.  I have decided to take on a new thing each day to make the world a better place. That sounds so cheesy as I write this. But after this experience I have realized that I have been given a second chance, and with this I am going to help change for the better what I can. So I am starting small. My first smile was when I saw my cousin Livvy when she got home from school. She was so excited to see me when she came through the door. The other was when I was trying on shoes today at Macy’s the woman who was helping me (Donna) was asking about the henna on my feet. This conversation always leads to my SJS because of the scaring on my feet and legs, and this was no different. She wanted to hear my whole story and then after she hugged me and smiled and told me some encouraging words. It was so cool. A complete stranger wanted to hear my story, which I made sure to say I would never have made it through without my family and friends. I think about my life right now and seriously, I want to do whatever I can to share the love and joy I feel daily from everyone. Anyway, grammy and I went to the Salem Mall and I returned something and we went to a few stores. We got lunch and then went home. The most important thing from this is that I used my arm crutches the WHOLE DAY! I walked up and down the mall twice! But I am certainly paying for that right now. Every muscle in my body is shaking when I stand and even sitting here typing my arms are exhausted. But the way I see it is that the further I push myself every day the quicker I get better. Or something like that right? After we got home my friend Laura came over and hung out with me for a while which was so nice! I am so lucky to have friends that will come and see me like that.

Have a great night everyone, depending on what happens tomorrow I will blog, if not I will blog Saturday. I love all of you, take my challenge too. Make two people tomorrow smile. For no reason at all, pass it on. 

May 21st

Today I had a ton of doctor’s appointments. It was so weird to be back at the hospital not in the hospital. It was a long day but hey it’s over. 

Derm told me that its going to be 6-9 months before my hair and my nails stop falling out, and until the weight from the steroids come off. For those of you who don't know, steroids cause you to gain a lot of water weight, and I feel incredible huge and bloated (whale-ish actually) as a result. I'm really sad to hear how long it will take. Because of the newness of my skin I can't be in the skin for a year, and that became obvious today when I got a sunburn just from walking from the car to the doctor's office. 

After visiting Derm I visited my primary care doctor, who I want to do a special shout out to. I forgot to mention her in my blog post yesterday and she has been absolutely AMAZING. She visiting me almost every single day in the hospital, and treated me like I was one of her children. Seriously, she is the best doctor I have ever had. We talked about my lungs, and decided to get a chest x ray to check things out. She thinks that it is probably still just the pain meds. We talked about my joints as well, and decided it would be best to wait two weeks and see what happens with them. 

I visited OB/GYN next, and they weren't super helpful because the treatment there is to 'stay the course'. Everything is healing slowly. They did sympathize with what a horrific experience I've had, especially as a woman. 

Caroline came for dinner tonight and ate with Mom, Tommy, Grammy, and I (Grandpa ate on his own earlier in the day). It was so good to see her, it's been a long time!! I got to snuggle with Ash and Pepper too, which totally made my day. Tomorrow I am going on a lunch date with my coworker, and I am thrilled to have the opportunity to get out of the house and visit with a friend!