DancingLight

I've got to admit that I'm out of the loop this time around, or I would have posted!!! I've relayed info to her via vm and super quick phone conversations, but don't know anything else! Sorry! Any information folks have sent me via email HAS been given to her, I promise...even if I haven't gotten back to you personally. I am hoping something will give her a lead. Kristen talked to her a bit and she was about the same, I think... As for the 'next step' I'm not sure where things stand... If anyone else has the scoop...let us know! Em P.S. What I do know....TODAY is ONE MONTH of her being in l'hopital!!!!!!!!!!!!!!!! UGH!

Amby, I ended up at one point seeing a psychiatric nurse practitioner to rule out a psychological basis for my physical problems. She wrote a letter stating that my symptoms were NOT psychological and that helped to have in my file to take to doctor's appts. I KNEW it wasn't psychological, but after being dismissed so many times I decided it was worth a shot to have an appt. and have it on record that my problems were not psychologically based. I was in therapy at the time, and my therapist suggested it, as she also knew that there was something very wrong going on that the doctors were missing... Emily

Lauren, The financial thing is tricky...they will count what your parents pay as 'income'. You may need to move into subsidized housing which is rent-controlled if you are on assistance. You are really caught b/w a rock and a hard place...I know your relationship with them is strained. Interesting that they will pay rent and such but not caretaker, even though you can't live with them...I'm sorry. More hugs... Em

Amber, I hope one of these upcoming appts. will bring you answers. Please, though, don't give up until you have the answers you believe in. I sensed from your last post that if they tell you again it's 'in your head', etc. you won't pursue more help. It may take a LONG time to find the right doctor, and a lot of tears along the way, but you deserve to have answers and to be treated so that you can have better quality fo life. It took me many YEARS to find answers and a team of doctors, and we're still searching. Emily

Happy Birthday Amby!!!! Sorry I'm a little late chiming in... Hope this year starts off a bit better...I know you've had a rough time lately... Emily

Lauren, Sooooo sorry about the EVERYTHING. I don't even know where to start. But first, before we deal with the grief of the break-up, we need to make sure you are getting the essentials you need to SURVIVE! I talked to my mom a long time about what to offer you for resources. Most folks really tapped in to what's out there. Rache recommended Meals on Wheels and other services I would have mentioned. Others mentioned the option of being hospitalized or put in a nursing home (ugh)...but it is an option. I don't know what your financial situation is. Without your bf there, I would think you would qualify for services? Are you already on assistance or SSDI? What my mom pointed out is that you need to call the County Assistance office or other service agency and let them know that this is AN EMERGENCY SITUATION. They will deal with the case differently. This IS an emergency and you cannot be waiting months to get care. You need care NOW. It's hard to imagine getting this all put together when you feel so crappy...ugh. Basically, your best bet is to look in the part of the phone book that is designated to Human Services and you will find numbers for things like Meals on Wheels, Transportation services for the disabled, County assistance, etc. etc. Your PCP may need to say that services are MEDICALLY NECESSARY. What I do know about you is that you are smart and resourceful and with that phone book in front of you, you will be able to do the legwork to get the help you need. I am sorry too about your bf. It's a lot at such a young age to handle I suppose. My illness ended my longterm relationship. However, all along your bf seemed to be sooo supportive? Did you see this coming? I just want you to know how much I am thinking abotu you and please keep us posted as to whether you find some help... Many BIG super-sized hugs, Emily P.S. What makes this so hard is that every county and every state are different. My massage therapist has a sister with Lupus who lives in a county with great resources. She is able to get 40 hours of help a week--cooking, cleaning, errands, etc. It's just FINDING the resources that is a challenge.

Jennifer, This is an 'okay' topic to talk about! And, from being around on the board awhile, what you are feeling is NOT uncommon. I typed in a search just using the word 'sex' and saw there were several related topics that came up (several unrelated ones too), but you can scan through quikly. Or type in Intimacy, Sexual relations, etc. Here's a link to just one topic that several folks responded to: http://dinet.ipbhost.com/index.php?showtopic=3696&hl= there were sooooo many on the subject, that I don't have the energy to post them all. I just typed in 'sex' and did is as a TOPIC search and got a bunch of hits. People have written some very helpful and honest things over time and I hope you will find them helpful. Sorry I can't post them all for you!!!! Let me know if you need more help and I will read through them and give you some more links.... Emily

Holy cow Nina! That was fast! Okay, Karen and Kristen...got a hold of Melissa and read her the scoop...so no worries. Julie, email me if you would like to correspond that way and I will pass it on....I told her about your person. Pooh...she called the person at Pitt and a I let her know about the article. Okay, gotta scoot....but YOU GALS ROCK! Em

Wow! Thank you all and Poohbear for tips to doctors.... Julie, I think that Melissa may know the woman you are talking about? Is her name Carissa or something similar? That would be a great help b/c she was trying to fidn that doctor. There is one a Pittsburgh (which Poohbear found, and I think that Melissa remembered a Pittsburgh doctor working with one of the girls with a similar situation).... Thank you all for your help and your problem solving! Without this board I would NEVER have figured out so many things that were going on with me. Anyways, quick note to: NINA, JANEEYRE AND KAREN. Nina--this should say update 5, note 4....sorry! I was so tired last night, but when I saw all the posts to Melissa I had to update before I went to bed. Janeyre or Karen--I'm swamped with appts. and low on energy....I'll try to give Melissa a quick call right now, but if I can't get a hold of her, can one of you call her and read her this info????? I feel like it needs to get to her ASAP! (Pooh, called last night already with the name of the doc you had, but haven't caleld about the article, just got it now) Thanks, let me know! Sorry to be so short, I gotta get ready myself for an appt... Love, Em

Amy, So grateful that you are home. Remember: You on the front burner, tshirts on the backburner!!! Hope you begin to regain strenght soon.... Emily

Oh, if only all of your good wishes could have worked. You are all so amazing. And, yes, Lauren, we are her cheerleaders! I always tell everyone I've got the pom poms in a color of their choice, just don't expect me to be jumping up and down too much (or at all for that matter!) Anyways, in all seriousness... Melissa's appt. today was cancelled and not rescheduled. I logged on here really quickly before bed and need to hit the hay....but wanted you all to be up to date on what was going on...if Karen or Kristen want to chime in with more details, please do! The doctor (who she has seen before) did not feel that there was anything he could do for her. Same thing she heard from University Hospitals in Cleveland. Her team of doctors is working so hard for her at Toledo, but it seems they cannot find a doctor who has a clue about how to deal with what she has going on. She is feeling frustrated and abandoned by the doctors at the other hospitals. She's very scared what will happen as soon as they take her off of the antibiotics and antifungals. Tomorrow they may try doing feeding through her nose...rather than all TPN....but don't know if she will be able to tolerate it. ON BEHALF OF MELISSA. I want to thank all of you for your continued prayers and support. Also, thank you for the cards you are sending. They matter so much (believe me, I know this on a level from when you all did this for me after my surgery). This is an amazing forum we have. We are truly blessed. Please keep your prayers and thoughts coming to Melissa...she's got a long and hard road ahead full of uncertainty and right now, fear. Emily P.S. I decided to start a new thread as the other one was getting quite long!!!!!!!!

Julie! Thank you for letting us know... Emily

Thank you Kristen for the 'latest'...this is starting to feel like a CNN newsfeed dedicated to Melissa! I mean that in a good way/funny way...things just keep changing so fast it reminded me of that. Em

MM, I was a bit spacey when I posted the update.... You mentioned the source of the infection. They are sure that it is coming from her small intestine. The problem is locating where in the small intestine, etc. It is the most difficult part of the body to test and made more difficult by the fact that Melissa throws everything they put in her right back up! Em

Nina, Things are sort of in a 'holding pattern' so I hadn't posted...sorry! Melissa is still at Toledo Hospital in the Transitional Care Unit. The doctors have been going back and forth with Univ. of Michigan trying to get her an outpatient appt. there. (University Hospitals in Cleveland did not feel that they could help her). If she goes to Mich. it will be by ambulance for an outpatient visit hopefully this week. They probably won't admit her b/c now she is not 'sick enough'. It's all a mess really. As soon as she stops the anti-fungals and anti-biotics she WILL get sick again and it could be worse than this time around. The doctors know this, but don't have any other options at this point. It's extremely frustrating and scary. She HAS gotten exceptional care at Toledo, even though it is a small hospital. They were hoping to find out today about the U of M appt. today, and I will post more info. as soon as I know. She is fighting for her life every day....and it is very hard. Emily

Michelle, Thank you so very much for updating us...Honestly, you amaze me. I know you are so swamped as it is, and to help out by keeping in touch with Amy and keep us up to day....THANK YOU. Hopefully they will isolate the bacteria soon, and get her the appropriate abx. Yikes though in terms of her Lyme as I hope the mega-doses of abx needed to treat the sepsis don't send her into a major herx. She's in our thoughts. Emily

Thank you Michelle for letting us know... Oh, Amy...I am so sorry to hear of this! Please put tshirts at the back burner and healing on the front burner! Is there anyone who is a 'buddy' with Amy who can keep us updated or read posts to her? Just wondering...It so helpful in a situation like this. I'm totally not making sense, but the 'buddy system' always comes to my mind when Melissa posts about me or I post about Melissa or Sophia posts about Morgan or Michigan Jan, etc. and someone is relaying the prayers and good thoughts... Healing thoughts sent from PA to IA! Emily

UPDATE: This thread is getting long! BUT I have finally read Melissa all of the posts under this thread! I think though that I missed a couple under other topics and will have to go back to those. Anyways, she 'sounds like Melissa' for the first time since she has been in the hospital. There are still so many unknowns and it is soooo incredibly scary, but right now, in the moment, she is stable. Aaaaah, deep breath, and maybe I will sleep tonight! So, tomorrow she is being moved to the Transitional Care Unit where she will be for at least another week. Also, they are hoping to have an outpatient appt. at U of M, but nothing is figured out yet, so I will wait until more details are known. BTW, she has received several cards....THANK YOU! Lois, Dizzygirl, Tessa (yes, your card made it from Spain!)...and oh shoot, mental block! Sorry...but she thanks you and I wanted to make sure to pass on her gratitude. Later alligators! Emily

Karen pretty much summed it up...but for those of you who like more details...here goes... Melissa (currently labeled human pin cushion) said she is hooked up to fewer 'accessories' (not her words), but that about sums it up. She's off of the oxygen and also has the foley catheter out, both a relief. Somehow despite, like double the meds for the colonoscopy, she felt it and was awake the whole time. UGH! They were waiting for her to be more stable to transfer her b/c she said that they couldn't run any of the tests they need to run until the fevers were under control. Thankfully they seem to be (at least for the past few days) and she is finally getting some sleep, as Karen mentioned. So, now it looks like they will transfer her, but nothing is definite yet--her case is so complex it's about finding a facility that will take her. It seems most likely the infection is coming from the small intestine and leaking into her bloodstream. Now, how is this happening, why it's happening, and how to fix it? This is the next big puzzle to solve. I used up her vm the other night reading your posts...so I've got a lot more to read! Thanks for keeping her in your htoughts. I think the prayers are kicking the bacteria and fungus in the you know what! Later alligators! Em P.S. I love the graphics you are all using. However, I don't think my commentary of them is doing them justice! She'll have to check them out when she FINALLY gets to be in her own fishbowl...which still is a long ways away.

I moved this up for nadine and b/c update will be up soon.... em

Nadine, there is, and i will respond in the other thread so you can skim through it. i should have a new update for you today also, as i see melissa left a message on my vm--i just woke up so will be listening to it now. Em

Sophia! Where do you find these things???? That has to be one of my favorite graphics so far. Love the slippers. I also loved the tweety one you posted to Melissa and I...I love tweety! (Are you surprised?). Pickledfairy, I am not sure your question really got answered here. I don't know if it will help you at all, but if you do a topic search on sleep meds or on a med in particular (Lunesta, Rozeram, Ambien, Ambien CR) you will get hits and hear what others have experienced. Also, Melatonin has been discussed. So many things can be used for sleep other than the class known as sleep meds, like the doxepin, other anti-depressants, klonopin, etc. etc...it just takes a lot of experimenting. (unfortunately!) Emily

Sophia! That's so quirky that this came up at the same time for us. I have always been given the yellow ones and had to split them, but now I take .5 mg 3x/day (yes, a whole tablet three times a day) While this amount scares the you know what out of me, my ANS specialist assures me that this is okay and I am not taking too much and if it works we should go with it and blah de blah. He's probably about ready to bat me over the head for asking so many times if it is okay. Anyways, the last fill I got was pink pills...and I had remembered a discussion on the board a LONG time ago about the different ones working differently. Turns out the pharmacy decided the pink ones were cheaper than the yellow and wouldn't give the pharmacist the yellow anymore. She fought for me and got the yellow, b/c I called and made a pain of myself also. Mostly b/c I take so many medications and several of them are pink and round also. So, I actually wanted the yellow so that I wouldn't make an error (even with the pill packs--there aren't pill packs with spaces for 8x a day!). She did say that the generics DO differ in effectiveness, but usually the pink and yellow are fine, but not the green and blue...sometimes people have trouble with those not working as well. So, it is good you have been find all this time with your green ones (or did you say blue?) Oh lord, my memory. Hmmmmm.....interesting how we differ so much on these things.... Doxepin didn't do diddly squat for me, and no one coudl believe it wasn't knocking me out! I think it is often used for sleep, Nina, but I think it's officially classified as a tricyclic anti-depressant? Don't quote me though! Em

Sophia, What color Klonopin do you take? Pink, yellow, green or blue? Have you noticed any difference b/w the different generics???? Just curious. Em

Tea, I'm sorry that you felt pushed over the 'cyberedge' as you say (like that word!). I am not sure what happened, but I am sorry. I actually think I may have been a contributer during one of the Lyme posts that got a little 'hot'. My apologies. Anyways, I just wanted to add one more thing...please do not beat up yourself for feeling funky or being 'away' for awhile. We all do our best. Easy for me to say right? When all I ever feel is guilt about not being able to be 'enough' to those I want to be. So, I feel your pain. But I can say, that people on this site are forgiving and I think so often we feel guilty when we need not to. I feel guilty every time I log on and see new members needing help and I just have no energy. We're just too hard on ourselves! I don't have an answer to your sleep question. I have never had a formal sleep study done and still use sleep medications. Most of my doctors, and especially my ANS doc operates more on looking at symptoms rather than a lot of testing and then does empirical trials of drugs. If it works, we're on to something. If it doesn't we're not. But, you are right that the endless trials of drugs that fail are exhausting. I wish I had more wisdom. I do think you are right to listen to your body, yet try to be open. A very wise doctor told me: "Emily: Don't take no for an answer. And listen to your body." He was referring to all of the doctors who had not taken me seriously for the past 7 years. Hold that in your mind as you travel to Oz. Later alligator! Emily