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Update from Laura

Hi all!

It’s been an incredibly long time since I have said anything here, and I’ve been doing a pretty poor job of responding to any of you that have messaged me personally. Sorry for that, but I just don’t know what to say usually and I don’t think I’d be of much help.

I came here tonight after somehow ending up on my father’s Facebook account. Facebook has this (I think new) feature of showing ALL of a person’s activities (maybe only available to themselves?) and I found myself seeing exactly all of my dad’s previous Facebook activity. I scrolled through all the birthday messages people left him and that got me a bit emotional seeing all the kind words from people he helped and from friends. Then I went a little farther down to find this:

Screen Shot 2013-04-01 at 12.24.32 AM

 

It might not look like much to you, or to anyone at first. But look close: July 8th, at 7:15 am. That’s in the morning before he went on his bike ride. This photo is just a silly picture my friend took of me the night before at a candy store down on the cape. If you click on the photo, he’s the ONLY one that liked it. He liked it only hours before he passed away on that bike ride. That’s the ONLY thing he did on Facebook that morning, according to Facebook’s records. He didn’t answer any messages, post on any groups. He just liked a photo my friend posted of me from the night before. We hadn’t even spoken the night before.

I’m not quite sure why I’m posting this here. It made me really emotional and thought it might be worth sharing. I don’t know really. I guess I’ll give you guys a real update from me though while I’m here.

I only have a few weeks left in the semester here at Vassar College. It has been an amazing year and I am so glad I am studying in the same place that my dad studied decades ago. Often when I am walking around campus by myself I wonder where his favorite places were, whether he ever ate at the dining hall or if he only ate in his apartment, if I sit in the same seat he did in any of the buildings…all kinds of things. I can feel him here with me sometimes. He was so happy I chose his alma mater, I can’t even describe it. And it’s definitely the right place for me. I have made amazing friends, taken the best classes, and just had an overall awesome time.

As for my health, I am doing pretty well. While home over christmas break I had an appointment with my doctor, but upon arrival at the office after a two hour drive, the receptionist proceeded to tell me that I didn’t have an appointment for that day. As you might expect, I broke down and didn’t have the best day. I did see a doctor, but not mine. I am not a fan of things being out of my control in general, and in this case something out of my control was completely messed up by someone else. All I wanted to do was scream at the receptionist and barge into my doctor’s office and meet with him. I wanted someone to blame for such a colossal failure, but there was no one to blame. I had vivid memories of being there in July and making a follow up appointment for six months later. This time I am not throwing that appointment card away and calling ahead of time to confirm. Since then I have only had troubles with this doctors’ office. They don’t answer my messages, they never answer their phones in general, and they have been very irresponsible with my allergy serums. Last week they were supposed to be delivered to my pediatrician’s office at home. I had someone from school and home call to make sure this happened. Of course, those serums were never delivered and I missed a week of injections. The nurse on the phone assured me that missing a week would not throw off my course of treatment, but I informed her that was not what I wanted to hear. The office messed up; it would be fine if I chose to go on vacation and miss a week, but they were the ones that screwed up. They did promptly send them to school on monday so I got my injections on tuesday, but I am still very upset with them. Oh and those messages I left that they haven’t responded to? Prescription requests. I haven’t had the Rifaximin I was on since starting school since sometime in January when I ran out. I can’t order it without a prescription like my dad did in the summer, and my doctor’s office hasn’t fulfilled my request for one. Yes, it is an extra prescription that isn’t entirely necessary, but it was helping and I really want it back. I will try calling again soon but, as I told the ladies on the phone at the office, the only reason I am not taking my business somewhere else is because I love my doctor so much. He is worth jumping through hoops and driving two hours and taking a whole day to see him.

Besides missing the Rifaximin, I am doing well. The doctor I did see in January told me to take an iron supplement as my iron levels were on the very low range of normal. I think I reacted badly to the supplement’s recommended dose of twice a day, and have been taking it once a day without any troubles. The allergy shots are going well and I think might even be making a dent in my horrible allergies. The B12 injections are AMAZING! I wish I could manage with health services here to get them twice a week, but once a week does work to keep me awake from 8am until midnight or so. I can pretty much function like a normal college student.

I have a good friend (he lives across the hall from me) here who is also gluten-free, and we work together to make sure we both eat right and aren’t just having salads for every meal. The dining service here isn’t the worst possible, and I am coming to appreciate the (nearly) constant supply of Udi’s bread.

While home for christmas my mother told me that she had heard from a friend that one of my friends was diagnosed with Crohn’s. I knew this friend was sick, but had no idea he was going through what I already had. She pushed me to talk to him and help him as best as I could. You know, your father would want you to help your friend; he helped total strangers. I finally worked up the confidence to send him a message (I wasn’t 100% sure my mom had correct information about his diagnoses) and it turned out to be a great decision. He really received my story and advice well. However, he is having bigger medical issues than just gastrointestinal so I haven’t spoken to him much lately. Hopefully when we are both home this summer I can spend time with him and help some more.

Well, it’s getting late and I want to get up at 9am so I can have breakfast before my 10:30 linear algebra class. I have no clue who will read this but thanks if you did. It’s pretty much a long rant, but I needed to get all of this out. It feels a lot better now. Maybe I’ll try and do this more often. Feedback on what kinds of things you want to hear about would help. I don’t have the time or energy to do the research my dad did. Obviously that is all important to me, but as a college student taking five demanding classes, I can’t be doing extra research papers (basically what he was doing here) on the side all the time.

Goodnight world [:

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Categories: Uncategorized
  1. tracee
    April 1, 2013 at 1:39 am

    (((Laura))) I loved that you shared. My prayers are with you. All the best to you!

  2. April 1, 2013 at 3:55 am

    Laura, heart breaking and heart warming!! Im so sorry you are getting the run around with your Dr!! UGH makes me so mad!!! Cant your mom get on the phone and make sure they do right by her daughter? I had my college daughter sign HIPPA papers so I can have access to her medical so I can do the leg work for her while shes busy with school. They do seem to listen more to an adult.. Please try that.. Im sure your mom wont mind will she? Best of luck Hun..

  3. Heidi
    April 1, 2013 at 6:42 am

    Hi Laura,

    I was so excited to see “Crohn’s Dad” in my inbox today! Thank you SO much for writing to “the world”! Your dad would be proud of you. He would not expect you to do the amazing research that he was doing, and we don’t either! You should focus on college for sure.

    It would be great if you can update us and continue to post from time to time. I am sure over time you will figure out what your dad’s, and now your, readers want to hear about. I would like to know more of your story of Crohn’s, from your perspective. What has helped, what didn’t, what is working now, as I am still struggling to figure out how to manage this disease!

    When I was reaching out for some answers to this disease after being newly diagnosed a few years ago, looking for an effective treatment other than some of the “traditional” medications that can be toxic, I found your dad’s blog/website. I appreciated that he was responsive to the few “comments” I made on some posts he had. I love that he had a really nontraditional way of looking at things, and that he was so willing to share his knowledge with others.

    I also can feel your pain about the loss of your dad, and I know what it is like to lose a parent. He surely was taken from you and the world too soon. Knowing how much he loved you, and that he tried to make things better for you and all of us with Crohn’s, hopefully is of some comfort to you.

    Give yourself time to figure out the future of your dad’s blog. For now, just hearing from you from time to time, and you sharing like you did today, is wonderful.

  4. Jacque
    April 1, 2013 at 7:43 am

    Laura, I read your email this morning, I’m so sorry things have not been going well w/ the drs. Bless your heart, you’ve been through so much! I’m glad you are going to the same school your dad went to, I hope that does bring you some peace thinking that you walked the same grounds he did. I will be praying for you and hope things to get better for you, Summer break will be here before you know it!
    I joined your fathers blog last year, I met him through another Crohn’s page. My daughter, she’s 11 now, was just diagnosed w/ Crohn’s when I met him. I loved his devotion and it taught me to not just accept what I was told, but to search out help for her until I was comfortable with the answers. We now drive 2 hours to see a wonderful dr too! She goes next week, I’ll think about you on our 2 hour drive 🙂
    God Bless~ and thank you for sharing your life

  5. Ellen L.
    April 1, 2013 at 8:50 am

    I’m glad you gave an update and the love you have for your dad comes through loud and clear. My 7 year-old son has crohn’s and that is how I stumbled onto your dad’s site. I research as much as possible too, and it is because I love my son so much. Take Care and don’t ever feel bad for not getting back to everyone. Your studies are more important!

  6. venus
    April 1, 2013 at 9:34 am

    Thanks for touching base and sharing…I have to be honest when i saw the email this morning, i skipped others and opened this one first! Please dont ever feel like apologizing for anything, ever. Do what serves you and remember we are all just human. I imagine melancholy days like this one will continue to ebb and flow throughout your lifetime, and it was not a coincidence that you found that picture and was reminded of your dads love for you…soley, that morning.

    Im glad you are feeling well, and doctors will forever be a pain in our ass, just dont ever stop being your own best advocate, (that is was I learned from your dad) I am a mom of a crohns son (13) and a crohns sufferer myself, and we can not afford to stay stagnent. Be well, and God Bless!

  7. Rivi Peer-Tirosh
    April 1, 2013 at 9:48 am

    I felt very emotional reading your sharing.
    You were open and sincere .
    Your father was such a protector for you and now you have to face obstacles that were not on your agenda before.
    The bright part is that his love will protect you always

  8. Shelley Stewart
    April 1, 2013 at 9:50 am

    Thank you Laura….I love you,Grandma

  9. Patty
    April 1, 2013 at 10:45 am

    Hi Laura! You made my day posting! My sophmore five hrs away attending Lehigh also has health challenges so I can relate, from a mom perspective. Ss she confronts challenges, I think and say a prayer for you too! She too made dental appointments to arrive at that office during her short break home, to be told she isn’t on that schedule! I now do a lot of the followup for her to help make sure she’s on the schedules. Not fair using up your break time home, and your much needed time at Vassar for following up these incompetences. Let your doctor know!
    Freshman year was soooo difficult for her, the health issues, new lifestyle, collegiate sprinter, bioengineer major! Sophmore year easier and I pray yours is too since you too have so many challenges. So glad you are at Vassar and feeling your Dad… with Easter, no doubt he is with you! Blessings to you and your family! Stay well, study hard, but have fun! Love hearing from you!

  10. Ann
    April 1, 2013 at 10:59 am

    Hi Laura: I sat down to read your email this morning and now I am sitting here with tears in my eyes. Your love for your father and how much you miss him reminded me of how much I miss mine. It’s very hard to lose someone you love so much. I do know that your father, like mine is watching us from heaven and saying, “good girl, I am so proud of you.” Be strong Laura, make your life as good as your father tried to make it for you and everyone he touched. Live strong in his memory and in good health. My son was diagnosed with crohn’s disease almost 3 years ago when he was eleven. It hasn’t been easy, but he has such strength and determination, something we must all never lose, and he is my inspiration. I’ve enjoyed reading all the invaluable information from your father’s research. God bless, and keep us posted of your trials and tribulations. I love this saying: Life is a journey, not a destination (author unknown).

  11. Jill
    April 1, 2013 at 11:30 pm

    I came upon your dad’s site when my then 10 yr old son (now 12) was suddenly diagnosed with severe Crohn’s and given a temporary ileostomy due to a colon perforation during his 1st ever colonoscopy. I’d really never heard of Crohn’s (or ileostomies) then, and felt I was in some sort of nightmare! This site gave me hope through your dad’s eyes, and I learned a lot about how to approach the treatments and deal with the new life we had before us. I turned to his research often in those early days, and I liked to hear about someone else who was on SCD like us, especially when it seemed too hard.

    I was so sad to read your post last summer, and I just cried for you as I read it. It is comforting to hear your update. Thank you. You both have been a blessing to this family!

  12. Christine Ryan
    April 2, 2013 at 8:15 am

    Laura, I had no idea that your dad had passed away. I was also happy to see an email from his blog in my inbox! My daughter, who is almost 26 has Chron’s, as well as Fibromyalgia, and Hyper-mobility Syndrome. She suffers more from those than the Chron’s, but I want as much info as I can get on all of her issues. Especially, non-traditional treatments, however, I am open to all info. I am so immensely sorry for the loss of your dad. It is however, very nice that you get to connect with him still through your attending his alma mater! I’m sure he’s with you always. Take care of yourself and please don’t worry about the blog. If you want to check in once in a while, that’s great! It will be nice to hear what’s going on with you, what’s working and what hasn’t. Take care of yourself!

  13. Julie
    April 5, 2013 at 12:00 am

    Hi Laura,
    I am glad to have heard from you. Your dad will always remain an angel to me. He did so much to support the Crohn’s communitly. I am really sorry you are having a hard time with the doctors. Please keep in touch. I JUST started a different treatment for Crohn’s called LDA. It is way to early for me to know if it is working because I JUST had my first shot last Thursday but I know two people that have had tremendous results with this so I am game.
    Blessings,
    julie

  14. Missy
    April 5, 2013 at 9:47 am

    Laura, Thanks so much for the update! I actually gave your dad’s website out just the other day to someone who is suffering from crohns. I know how much you must miss him! He did such a wonderful thing for you and all the other people he has helped and is still helping through his countless hours of research. His love for you still shines through. It is so special that you were able to attend the same school as your dad. I know you are making him proud. Your dad was kind enough to take my phone calls many times when my son was diagnosed at age 10 with crohns. I can’t tell you what that meant to me and my family. I too would love to hear more about dealing with Crohn’s from your your perspective if you have the time. It was great hearing from you. Take care and thanks for sharing!

  15. andrea
    April 15, 2013 at 6:47 am

    Thank you, Laura. I would like to know if you continue with the same protocol your dad had you on and how are you doing. What supplements and meds are you taking and how is your diet, are you doing paleo?

    Don’t apologize for ranting, if someone understands about doctor’s offices are us! And I don’t think many of us like them either….

    Many of us miss your dad and even thou nobody expects you to do any research we’d like to hear from you from time to time, to know that all the work that your dad did is working for you. It’s working for my little girl, and for that I will always be thankful.

    Hugs to you.

  16. Moe
    May 30, 2013 at 4:21 pm

    Laura,
    I am fairly new to site and I wanted to tell you and your family how much I appreciate this site! Your dad’s research was amazing and I am truly blessed to read his articles!

    May God bless you and your family and may your Dad rest in peace!

    Moe from Los Angeles, CA

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