JaneEyre9

Melissa's off the morphine (yay!) and she hopes to be coming home by Tuesday. She is weak and still can't get up, but is making progress, so that is good!! Thanks for those who sent cards...I received 3 more today and will be including them in a mailing to Melissa soon. She should have fun opening them when she gets home! Kristen

Check Emily's new "Friday Night Melissa post" for the newest details about Sunfish! Keep sending the cards!!! It's not too late!

Hey Emily! I couldn't have written a better update! I just got off the phone with Melissa now and she said that things are improving, but obviously she is still very weak. I also can't imagine going through what she has been through over the past week. It is incredible how she was able to fight off such a terrible bacteria in her blood with the wrong antibiotic to boot! Those prayers are helping! It still remains a mystery how that bacteria got into her blood. She joked that she thinks she has a chicken stomach! It's very unsettling to not know where such a terrible problem came from, but at the same time, it's good that there are no abscesses in her intestines that could have leaked bacteria. One day at a time. She told me that she was able to get a special shower cap to use in bed, which cleaned her hair up a bit. She also was able to wash her face, but she still looks forward to a shower. She had visitors today (including a large team of doctors), so it was a big day. It's tough for her being on the morphine because that lowers her BP, and steals even more of her strength. Please do keep the birthday cards and posts coming! I told her that birthday wishes will be on their way, so send send send!!! I will put them all together with these wonderful posts, and she will be able to read them all next week. Kristen

Hey all, I'm about to call Melissa. If i get a hold of her, I'll post what she says. Please keep sending the cards. Only one has come through to me so far. Believe me, she will love them even if they arrive after "the day." I will make sure she knows your wishes on the day, but after Saturday is definitely NOT too late! Kristen

How wonderful that he cares for your mind and heart, not just your physical health! Thanks for sharing...it gives us all some hope Kristen

Guys like that must have no idea how much their words sting. I had the same thing happen to me in high school when i gained weight on steroids for mono. It was not easy to get over because i'd always valued this guy's opinion of me. Now I can look back and see he was just insecure and superficial to say such a thing. He still is interested even after all these years. I'm not though! ;-) Haha. Hang in there...you are great just as you are.

Hey Emily! You made me laugh with your uterus begging to bleed. I can't tolerate the pill, so i am a period expert! I get soooo sick every month with my period. I tend to rely on Ascriptin which is aspirin coated in maalox. It helps my IBS cope with the onslaught of pain killers. I also rely on the heating pad. (I really like the peel and stick ones you can buy at the store because then i don't have to worry about a cord.) I drink a lot of water and keep my feet way up. Also, I survive by distracting myself with movies and staying as still as humanly possible. Sometimes a lower back massage helps too (as well as warm water on the back)! Good luck...hopefully it will be over with before you know it! Kristen

I have been worrying too, Emily! What gives me hope is that she was able to talk very coherently, and she said she had been able to watch a little tv. She also sounded hopeful about sleeping (with the pain meds) tonight. She is always so positive though...so you know you are getting the "sunny-fish" side of things She was so funny with her optimistic comments--- said that her PICC line insertion and second spinal tap were the "least painful ones she's had." Also, she is enjoying a private room for now! What a positive, sunny fish!

I just got off the phone with Melissa. She has been through a terrible ordeal and is still in the hospital. Briefly, on Friday she very suddenly got the worst headache of her life (a 10 on the pain scale) but it was not a migraine. She saw her doctor, got blood work done, and had a fever of about 103. On Saturday things seemed better, but by Saturday night her fever reached an unbelievable high of 107 degrees F! She was taken to the ER and many tests were done. They are still waiting on the results of some of these tests, but they did determine she had a line infection. Her PICC line was removed today, and she had another one inserted. The problem is that she still has the bad headache (now a 6-7 on the pain scale). She had two spinal taps to try to determine the cause. The fever has been up and down since the extreme high on Saturday. She does not know how long she will need to stay in the hospital. She still has a moderate fever and the bad headache, but is getting some strong antibiotics and pain meds for now as a "bandaid."

Thanks for the updates, Michelle and Emily... When Melissa leaves a voicemail that she had a "bad weekend," i guess for her, that means hospital! I'm glad that the antibiotics are helping the fever! Melissa...hope you get out of there really fast. Kristen

Hey Jacquie, I've had sleep problems that are induced by meds. Have you noticed problems related to new meds or increased dosages? If not, a sleep study is sometimes helpful and not the end of the world. It's probably one of the easier tests out there...hope you get some answers! kristen ps- i've read that beta blockers can increase the incidence of apnea

That's wonderful, Persephone! You've really triumphed over some tough circumstances. It sounds like your school recognized that fact in your letter. You're really lucky that you had the ability to push your way through graduate school, since that's not always possible with dysautonomia. I was in the middle of my graduate program when the bottom fell out, and even though i tried with all my heart, my body wouldn't let me go on. I was fortunate that my classes and experiments were over because i couldn't do any of that, even with special considerations. It took me an extra year to finally get my paper turned in to graduate, and then i had to stop my research indefinitely. I'm glad this wasn't the case for you!! As a one-time grad student, I really appreciate your great success and accomplishment! Congrats! Kristen

Hey Emily, Thanks for the warm "re-welcome!" Don't even give the old PM correspondence a second thought! I know that you have had more than your fair share of health challenges. I never think twice about that kind of stuff. Honestly, it was just nice at the time to vent to someone who gets it, ya know? I'm also happy that i can take some time to do some quiet hobby things these days. It was definitely not that way when i joined here a year ago. Fill me in on your Lyme treatment if you have the time/energy...but only if you are able and WANT to....no obligation to reply. that goes for future messages too Thanks again for the warm welcome. You are always so sweet to keep track of each person's deal and make them fell welcome and wanted here. Kristen

Haha! Thanks Emily! I have been very delinquent in posting these days. I still love to come and read. It's like coming home I've actually been branching out my activities so i'm not on the computer 24/7...reading, writing, crocheting...glad to see you posting too

Dear Melissa, I wrote out a post here, but it sounded all wrong, so i'll try again. Everything here has been so well said by people with love and care for you and with a wisdom that comes from their own suffering, that i feel there is little to add. One thing i can add is that i'm one of the many people here who love you and admire your strength (even as you grieve, you do it with strength and honesty). Thank you for sharing your feelings here as you did. I know it's a risk to open up like this on any level, and I realize your losses and pain run very deep (though i can't ever possibly know how you feel). I pray for you all the time. Even in the midst of your pain, you still have the amazing ability to be a great encouragement and friend to me. God has used (and continues to use) you in a big way in my life. I know that doesn't change what you're dealing with, but i wanted you to know, nonetheless! kristen

I've been unable to work since my diagnosis over a year and a half ago. I tried to work at first, but the stress made me significantly worse (which i didn't think was possible at the time!). I finished my degree from home thanks to an understanding boss. Kristen

Jan, I'm so sorry to hear about Jeff's passing. I wish i could do or say something to ease the grief. Know that I'm thinking about you and praying for you tonight. Kristen

Hello, I have been eating lactose free for about 13 years. The past 7 years have been very strict because my intolerance got worse after my chemical exposures. I've experimented with a lot of dairy substitutes, and I've found the ones that i think are the best quality. I enjoy these substitutions: Milk == Lactaid milk Cheese == Soya Kaas cheese (cheddar and mozzarella) [this brand is the best for melting and flavor, but can mold easily if it's not kept dry-- wax paper and ziploc bag] Yogurt == Stonyfield Farm O'Soy (soy yogurt). Ice Cream == Tofutti ice cream or ice cream sandwiches// also Breyer's Lactose Free Vanilla!! Yum! Butter == Mother's Margarine (comes in sticks-- melts well for cooking) // Smart Balance also makes a lactose free tub margarine that's passable Frozen Pizza == Amy's Soy Cheese Pizza Egg Nog == Silk Egg Nog Cream Cheese == Toffuti Cream Cheese These are my favorite products and they can be used to make almost any dish as well as if it were made with the real thing. The only things i've had trouble substituting are buttermilk and condensed or evaporated milk. One time, i tried to make a pumpkin pie, and the lady at the health store suggested substituting tofu for evaporated milk. I got the semi-firm kind and tried to mash it up, but it ended up floating around in little chunks. My parents thought i'd made a pecan pie by the appearance of the thing! Though, everyone admitted if they closed their eyes, it tasted delicious! Hope this helps. A lactose free diet is really wonderful and a lot healthier than a diet with dairy. PM me if you have any questions Kristen

You did it! What a great accomplishment, Persephone! Treat yourself to something yummy and/or fun. I know how hard it is to do school with POTS. Congratulations!

A normal dose didn't do me many favors, but I'm sensitive to meds, so a lower dose seems to be doing the trick. I particularly appreciate that i don't have gastrointestinal trouble from it, as many meds do that to me. Good luck!

Hey Dizzy, I haven't been posting much, but i've been skimming the posts...I'm so glad you got some validation and new treatment options. I know you've been suffering for a long time with all of these symptoms that don't seem to go together. Good luck with your upcoming testing and new med! Kristen

I had this feeling about a year ago after a reaction to CT dye. It lasted a little over a week and benadryl seemed to help. I got the same feeling again this week. I'm not sure what's causing it! I'm wondering if it's a food allergy.

Before my diagnosis with POTS, I was a commuter and drove at least 2 hours a day while in school and working. When i suddenly became very ill, i was too dizzy and sick to even leave the house, so i had to stop working and give up driving. It was a big loss for me, and i had to go through a grieving process and sort of put it on the shelf. Well over a year of treatment later, i found i had occasional times where i felt really well. I tried driving locally with an-able-driving passenger during these times. This has been a big step forward so far, but by no means is it a reliable source of transportation for me (ie for a job) because of all the limitations i list here: I never drive when i feel symptomatic (dizzy, tired, not at my best) I never drive when i have PMS or my period I usually have a passenger with me if i choose to drive. I don't take risks of driving on little sleep, or on an empty stomach I always have a bottle of water with me I don't drive far distances. I try to avoid rush hour or stressful driving situations. I find that at this point in my illness, going out for a short drive is very healing and relaxing for me. It has always been one of my favorite activities, so emotionally, it gives me a great boost to get out on a nice day. I always remember that driving is a responsibility and not a right, so i take it very seriously.

I feel exactly the same way. It makes me really nervous to tell anyone i'm feeling good because i could be feeling bad again by the next day or even in a couple of hours. There are few people who understand that "i feel good" is a transitory thing to be treasured whenever you can get it. Sometimes i get so excited by small improvements that my joy conveys that i'm doing a lot better than i really am.

So glad to hear the good news, Sue! Thanks for updating us!! Kristen