DancingLight

Just a note about the booster shots, since that is what immediately came to my mind in regards to relevance to folks on the board... My PCP has been recommending the booster for whooping cough and my ANS doc has given me the A-Okay to get it. (And he's the one that does NOT support me getting the flu shot)... So, I think it's a good idea to check in to the booster, b/c as Sophia said, there have been quite a few outbreaks of whooping cough in various areas of the country in the past couple of years especially. There is also a measles booster (I think?) or is it mumps? I can't remember! But, the are also having outbreaks of those and recommending boosters for those. Time to get your booster shots folks! Here's hoping your exposure to the whooping cough does NOT cause you any problems, Maxine, and also to a speedy recovery for Mackenzie. Emily

Rachel, Thank you so much for posting this update (and I totally owe you in the email department! Sorry!). I know it is helpful to be getting answers...but they are such hard and difficult answers to deal with. It just breaks my heart. I want it to be a nightmare. I want it to not be true that this is happening to you. You have such a spirit of peace in adversity and I admire that so much, but gosh, this is hard, hard stuff. I am so sorry you are going through this. I'm really not too good with words right now as I can barely see straight I'm so out of it, but I saw your post and wanted to at least check in b/c I haven't checked in with you in such a long while. Please keep us posted on what you find out. I do hope that they will find something that can at least slow the progression and give you some better quality of life. It sounds like the doctor was really good (which is always a bonus in such situations) and that you are getting the medical attention you deserve. I have to admit that I am absolutely amazed at what they can do medically to test for this. You are always in my thoughts... Hugs to you, Emily

Michelle, Hope you had/are having a WONDERFUL birthday...and you didn't do ANY DINET-related work today! Faithful leader is a good description...so many of us would be lost without DINET! I can't believe I'm approaching my 4 year anniversary as a member! DINET is such a great resource...it's so well laid out for folks to read and I refer people to the website all of the time. The people I have met here have changed my life forever... I just read an article on advocacy in Neurology Now and they were discussing creating websites, forums, etc. and how much it takes just to create the initial website. I was exhausted just thinking about that part! LOL. So....bravo to you and many, many blessings in the coming year. Emily

I am so grateful for this post! I want to write more, more, more...but I must take a bath and rest! I'm pooped! BUT, the last post by you, Morgan, had me smiling and crying and well, you know how much I have a special place in my heart for Jake--so I just wanted to say how happy that story made me. Thank you for sharing. Thank you all for you wisdom, I will try to write more later--but I really appreciate Katherine and Morgan really saying what they said. It was what I needed to hear for sure. Also, Sophia--I want to assure you I am being very, very safe! I'm using eHarmony, which makes it very, very easy to keep yourself safe. They even have a 'secure call' thing so that you don't give out ANY phone number. And you can email in the open communication stage for as long as you want on their site, so you don't give out your email or anything. I also like the Guided Communication set-up and the ability to close a match, so no one can pester you if you decide they are not respectful. BTW, can people trace your cell phone number now? I thought I heard there was a reverse search now (but you have to pay for it)? I actually know of a few couples through friends who have met on eHarmony and are engaged right now! Sometimes I laugh a little b/c I feel like I have been 'mothered' by you all so much and I'm so grateful for it. You all watch out for me and so many others. This topic came up at the most perfect time in my life. Thank you all, Emily

Don't faint with joy, please? Well, I read your post and I was just happy you finally got some sort of 'break' from doctor crap b/c if anyone deserves it, it's you! You've been through the ringer so many times it sickens me. I miss you and just wanted to say a little hello....hope you are sleeping tiredmorgan... Emily

Ernie, I haven't been on the forum in ages! And wouldn't you know that a topic much on my mind lately was the top post? Yours! And it is Valentine's day here after all! I would really like to hear what others have to say on this topic and also how they approach discussing the nature and scope of their illness with a potential date/partner, etc. At what time is it most appropriate to bring up this information? I have just begun a journey of trying to do some internet dating/corresponding but so far I just joined and am just getting started. I am struggling with feeling like it's a horrible thing to put myself out there and men are interested in my profile--but don't know that I am sick. And when I tell them is it a total 'deal breaker'? And how do I tell them. Am I just playing a mean trick on them by even putting myself out there. On the flip side, I'm trying to believe that I am worthy of love, and that I have a lot to give as a wife. I also don't want to look back on my life and say "I never got married' and feel sorry for myself, when in fact, I did not even give it a TRY. So, I am givign it a try. I'm not in any hurry to be married, so I think the internet dating works well for me as a way just to interact with men and overcome many of my fears of men and dating (I've had some bad experiences in the past). I also wonder about the issue of sex and sexuality...I know that you have a high sex drive, but I think sex would land me in the ER right now! So, I do wonder how to approach that issue. I am torn b/w feeling it is time to accept my illness as a part of who I am and accept that healing may or may not come. Either way, I want to feel that I am deserving of love. I used to feel that I only would try dating or looking to marry when I was 'better'. Well, what is 'better' and will 'better' ever happen? I'm not going to wait for that. I'm only about two weeks into joining a website and so I really am just beginning to learn things. It's very interesting!!!!! LOL. I think maybe there are great guys out there but it may take time to find them? I worry about being seen as a burden and a financial and physical drain on someone. Yet, I am so full of love and life and spirit...so I'm hoping that's gonna get their heart first and then we'll deal with the sick stuff? Who knows. I hope others will share on this topic. It's been on my mind a lot and I had thought about posting. I know those of you who are married find strength in your spouses and in your children--but you also struggle with the feelings of burden and guilt. So, I realize that the grass is not always greener on the other side of the fence! I just know that I have always wanted to be married and always, always, wanted to be a mom. But, that part I will have to let go of for now. Sorry I've been so quiet! I pretty much stick to blogging if I'm on the computer these days! It's hard to keep up, as you all know. I miss you all! Emily

Kristen! Thank you so much for posting this update. I've been wondering ALL day if the port access was successful. It sounds like an awful ordeal and the pain will certainly be miserable was things heal up....but all I can say is that, as you said, thank G-d the port went in at all. I know Melissa will endure the pain in return for port access. Just wish everything didn't have to be so hard for her. Anyways, I just found my way over the computer wondering if an update had been posted....and am so glad you posted and kept us in the loop. I wanted to call but figured she'd be too uncomfortable...which it sounds like she is. Plus, those 8 am tests and procedures are no good for us!!!!! It's the middle of the night!!!! Thanks so much for the update and the clever 'she got her gills' analogy. Good news. Maybe I'll sleep tonight. Emily

Gosh darnit! I wish I could remember how long they tell you to see until it works....is it a month or three months? I'm not sure! It just depends too how much your dosage is and how your blood work goes (mine kept going too high). It will take some time and it will also be gradual. I'm glad that you got this med approved. I, too, had no problem getting it approved but they won't approve several other much less expensive drugs! It is a puzzle to me! Keep us posted, Emily

Melissa, Bravo to you for being truthful about death and dying on the website. No one, and I mean NO ONE should have to go through this alone. All too often though, people do. I admire that you posted the truth, even if not the whole story...you shared some of it. I have not been travelling this journey with you as much as I would like, and for that I feel terribly. In the humor department: 1. You really expect us/me not to worry if I/we don't hear anything from you? 2. Not one of those stupid things down your throat again. Grrrrrr....I hope you are not unable to talk again! And in so much pain afterwards like last time. 3. You sure like early morning tests (not)...tomorrow we leave at 7 am for my urodynamic study, so I'm very excited about that (haha). 4. Who knows what else struck my funny bone but well, except the fact that you stayed up until 4 am trying to get stuff done before going l'hopital. I am not going to give you any sugar-coated answers or whatever it's called. I have and continue to know that the dying process and dying are on your mind every day and that every day you are alive is one day you thought might never come a year ago. You are cherished here on earth. You are a blessing to us all. But I also know that weariness and fatigue are overwhelming in this process. And we must be prepared in some way to let you go. I need to get to bed myself for this appt I have!!!!! But your post 'required attention'....anyways, shoot, I forget what I was gonna say. Oh, I am looking forward to the 7 month tome on your website. Lots of love, Em

Doctorguest, May I share your words on my blog? I think your explanation of how much this illness is still misunderstood would be of great help to those who read my blog! I wanted your permission first though. My ANS doc was thrilled with Newsweek article and says he'll be handing it out to his medical students! LOL. Emily

Bravo! And Thank you. The following article is for doctors like you: MY TURN Falling Into a Medical Abyss Living with a rare disease is a little like being an orphan. But one doctor has helped me find a home. By Mark Schreiber | NEWSWEEK Some days I wish I had cancer. I'm even tempted to tell casual acquaintances that I have cancer, because when I say "severe aplastic anemia" they look at me blankly, or they reply that their aunt Sheila has anemia or, worse, they say, "Thank God you don't have cancer." That's what the hematologist said after reviewing my bone-marrow biopsy: "The good news is, you don't have leukemia." I run my uncle's internal- medicine practice, so I see cancer patients and survivors all the time. There isn't much that shocks or frightens anymore in this exhibitionist age, but there's one bridge that everyone still trembles before: cancer. Yet during my first trip to the oncology ward?oncology because there are no wards for aplastic anemia?four successive roommates, all leukemia patients, returned to their lives after receiving treatment while I stayed and reflected on mine. Aplastic anemia is a noncontagious disease in which, for unknown reasons, the body's immune system destroys newly formed blood cells in the bone marrow, causing life-threatening anemia and high risk of infection and hemorrhage. When you have a rare disease like mine, you don't fall through the cracks in the system?you fall through a gaping abyss. There is no money for what you have, no telethons, no support groups, no ribbons of camaraderie. Because there is no profit in developing and testing drugs for rare diseases, they've been lumped together as "orphan" maladies, much as real orphans are crowded together in one place to be more efficiently cared for. And the metaphor of being an orphan feels all too real, as if you're abandoned to dark corridors while mansions are constructed to treat diabetes and AIDS and Alzheimer's. When you're an orphan you envy people with families, even such horrific families as cancer. But there's one glowing advantage to having a rare disease that perhaps redeems all the rest. You never have to wait for an appointment. There may be only a handful of specialists in the entire country familiar with your disease, and you may have to endure hardships to reach them, but they'll see you right away, and they won't have to look at your chart to remember your name. After I was diagnosed last April, Dr. Jaroslaw Maciejewski, a Polish-born researcher at the Cleveland Clinic, offered me an appointment in three days, and even then apologized for not being available sooner. My parents drove me two and a half hours to the steel-and-glass structure on the Cleveland Clinic campus called the Taussig Cancer Center, because there are no buildings for aplastic anemia. As a child I had reveled in my nonconformity, but now, at 46, I wanted to meet people just like me. Instead I saw two floors of pale women in headscarves, and wheezing men with canes or walkers. Yet many of these beleaguered patients were in remission, and all of them, I realized, despite their obvious suffering and my deceptively normal appearance, might outlive me. Patients are often tossed from doctor to doctor and given little time. I got two doctors. First a fellow came to take my history and examine me. Not a student or resident but a hematologist-in-training rotating through this specialty clinic and serving as a kind of Watson to Maciejewski's Holmes. That was my first impression of the idiosyncratic doctor as he burst into the room, shook my hand and leaned against the sink, his hands empty, his hair tousled, his blue eyes piercing yet not unkind, and began, as though we had long been friends, "So, Mark, tell me ?" He spent more than an hour with me, patiently explaining my options, the history of the disease, the current state of research. Thirty years ago the severe form was always fatal, but now it can be pushed into remission or even cured by a bone-marrow transplant or less risky immunosuppressant treatments. When my mom let slip that I was a writer, the doctor's eyes lit up and he implored me to write a story about scientists, a thriller, filled with intrigue. Not the sort of tale to give a new patient confidence, but that was the best thing of all, not to be treated as a patient. So wear your ribbons and watch your telethons, but know that your cures might be born in an orphanage like Maciejewski's. And even if they aren't, these doctors who treat rarities deserve high praise for their devotion, whether they save a hundred million lives, or just one. Schreiber lives in Columbus, Ohio. Schreiber lives in Columbus, Ohio. ? 2008 Newsweek, Inc.

After fighting for months for approval of Lyrica, my doctor received news that I got approved based on a diagnosis of Fibromyalgia. He wrote to tell me the good news and also told me about the article in the NY Times. My mom and I both thought it was such a poorly written article...I was so disappointed in the NY Times. I was afraid Medical Assistance might change their mind on my Lyrica approval! LOL. I am so grateful that so many people wrote to the NY Times slamming them for this article! I will pass the link on to my doctor and he will be pleased that at least some antidote to the article took place. Thank you for posting the link Sophia! Emily

Tearose, Wow, you really hit a button for me too! I can't believe how many of us feel this overwhelmed in the same way. I will try my hardest to post on this topic later, but I'm totally wiped right now!!!!! And a big part of it is b/c I've been trying to find a way to gather up myself to get balanced again and figure out what to keep and what to pitch and just thinking about it all wears me out! I've been talking it through a lot with friends and a caregiver and also feel the same emotions you do. Letting go, yet keeping hope...it's all a very complicated mess!!!!! So, I hope you'll check back at this post later in between your sorting!!!! Emily

Lisa, I'm just like you are. I actually used to get chronic sinus infections also, but those stopped too after I got sick. I figure I'm sick enough...don't really need more on my plate! But I am soooo thankful that I don't get other stuff...I think I have had one sinus infection and one bug but can't even remember since getting sick almost 10 years ago. I agree with all of wareagle's statements....I have wondered all of the same things. I, too, often don't see anyone other than my mom and I usually tell someone if they are sick they can't come over! LOL. I wish I understood the WHY behind it...it's so strange. Emily

Julie--I couldn't agree with you more. Pat--thanks again. I was able to use the FDR quote on my blog tonight and it was EXACTLY the quote I needed for the events of the day. Thanks, Emily

Pat, Thanks! Maybe I was thinking of the FDR quote? Not sure. But those are all good ones. Emily P.S. what did you put in as your search criteria?

Mack's Mom/Julie, Do you remember who it was who said that quote about how we should be judged as a society by how we care for those most vulnerable??? I have been searching and searching for that quote and the person who said it for a VERY long time now!!!! Please enlighten me! Was it FDR or one of the presidents? I forget. And it's driving me nuts!!!!! Thanks! Emily

hello lois!! how are you? hope you are warm in florida! i was originally diagnosed with EDS III by Dr. Grubb. later i went to hopkins and saw a geneticist and he said i DID NOT have EDS III. i no longer consider it a factor in my illness--i have a few very slight symptoms of it, but not enough to account for the severity of my illness. he spent about 3 1/2 hours with me--the exam included an extensive family history, the beighton scale, history of dislocations/broken bones, scarring, and skin 'texture' (mine is very soft and doughy, a characteristic of EDS). there is no biopsy for EDS III, it's completely a clinical diagnosis. i felt really good about having a geneticist do the evaluation and later had the same confirmation from my POTS doc. hope this helps. emily

Linda, From your post it sounds as if your dad DOES have memory of a tick bite. Am I reading that correctly? Can he link beginning to feel sick some time close to after receiving the tick bite? Or a bout of fatigue, flu-like symptoms, a 'summer flu', achey joints, etc? I doubt that eight weeks of abx would be enough to treat Lyme if he has had it for over a year. And, YES it is normal to feel much, much worse when you start the abx. Some people take that as a sign that a person actually does have lyme b/c they become so sick from the abx. Do you know what abx he is taking? Anyways, the basic lab tests are inconclusive and rarely detect lyme, especially chronic lyme. They pick up a lot of false negatives as well as false positives. There are several Lyme associations in Pennsylvania and they will refer you to a Lyme physician in or near your area of the state or to nearby states you are willing to travel. You just need to google Lyme and Pennsylvania and contact them directly for a referral. I hope you are able to find some answers soon. Emily

Fascinating article. I didn't know the science behind Gatorade or the history of it. Thanks for sharing. His invention hasn't just helped athletes that's for sure. How many times have you walked out of the ER with a bottle of Gatorade in hand as your 'prescription' that they probably charged you $15 for? Haha! Emily

Merrill! I am so glad that you checked in with us! So many folks have wondered how you are doing. I love what you said about your little girl and your life now. It brings me such joy! Love, Emily

Amazing! I never knew such things existed. Those supine workstations are pretty cool stuff. I wish I had known about the laidback laptop long ago! We created our own little set-up using a recliner, a table that fits under it (from a medical supply store), a thingy that tilts the laptop at an angle and then I use a separate keyboard and mouse. It works okay, but does hurt my neck. It's far, far better than what I used before though which strained my neck even more! I wouldn't have even known such products existed, thanks for sharing! Emily

Definitely do a search for topics with the word 'Gallbladder' in them--you'll find a LOT of stuff. There are a lot of us without GBs that are in our 20's. And, Nina always says it right--the HIDA scan with CKK (CCK?) is the gold standard so that is the way to go. I don't agree with rushing into surgery though, as that was the worst experience of my life! Hope you find some 'hits' and more information through a search... Emily

Hello All! Rachel, Thank you for posting for my birthday! And, Corina--I think you were off by 24 hours! Oops! But, I'll give you an A+ for effort! I really appreciated the birthday wishes and I am sorry I'm so slow to thank you all! I did have a very good birthday filled with lots of love and we got to spread it out over the week! I think we should all have a 'birthday week'! I'm hoping 32 is gonna be a good one! Love, Emily

Rachel, I have found that it is so very difficult to find doctors to pay attention to the food intolerance issues. I did a total elimination diet and then gradually added some things in. Follow your gut (literally and figuratively!) on this one... My docs now 'get it'...and I am really lucky, but it was still something I figured out primarily on my own. Keep us posted! Emily