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.