JaneEyre9

I shipped the last set of books! If you sent me your address, then you should have your book shortly. As bugs bunny would say...That's all folks! Kristen

I watched it yesterday and totally didn't expect to start crying, but I did. I'm still not sure why-- maybe just identifying with the pain she went through. Anyway, I'm glad to read I'm not the only one who teared up.

I'm so sorry to hear about these scary symptoms! From the reading I just did, it seems like a hypodense region is just as it sounds, an area of brain that appears less dense than the rest of your brain on your CT. Density on a CT is just like density on a regular x-ray. On a regular x-ray, you see bright dense bones because they absorb more of the x-rays passing through than the darker low-density areas of fluid. So just because there was a dark area on the scan doesn't mean there is necessarily something wrong. It just has to be explored further, which is probably why your Dr. couldn't tell you any specific answers. I hope you will keep us updated on how your MRI goes-- good luck, hon. Kristen

Congratulations! It's great when two chemistry friends find chemistry-- hahaaaaa! Seriously though, to find a guy who gets the medical stuff, is patient, and is your best friend on top of love-- well that's the real deal. you know he'll be there in sickness and in health, good times and bad. Very happy for you! Kristen

Well Morgan, I clicked on this post because I was amused by the "guess i'm not sick anymore" subtitle. However, this is anything but amusing. The first word that comes to my head is total abandonment. That's how this must feel for you and your son. You don't have people that will do the stand-up thing and just stand by you. I'm so sorry. You shouldn't have to go through another round of questioning and denial, and your son shouldn't be a homeless medical case. It's horrific when you are so sick and so in need of help and validation, and you just get more victimization on top of it-- denial is a deadly weapon when wielded by a doctor or anyone in a position of power...what they say goes, and you have to abide by it even when it's not the truth. What you and your son are going through is horrible. Kristen

Update from Melissa: Our fishy got her gills put in today! Or in other words, the surgeons were able to place a new port in Melissa today. She is in a lot of pain and on a lot of pain medication due to the 3 tries it took to place the port. Even with the drugs, I could tell it was a rough procedure. She was also having lung pain to the point where she couldn't breathe well, but the chest x-ray came back ok. This is another relief, as there would have been crisis if she did not have port access for her vital daily fluids. So basically, she is not out of trouble by any means, but has some room to breathe right now. Thanks be to God, Kristen

Hey Melissa-- glad the news is as good as possible so far-- i'm wondering the same as nina-- are the fevers gone?? still praying for you dear one! Kristen

This is a very interesting poll. I'm sad to see that 100% got worse after pregnancy. That's not a very hopeful statistic so far!

You already know how much I don't want this to be your new reality, and also just how much I admire the way you are handling it... With grace, strong faith, and authenticity as always. You are a bright light for God, a terrific friend, and an amazing example in my life. Love, Kristen

Unfortunately, I haven't made my third post office trip yet. However, most of you should have your books by now. If you asked for one and don't have it yet, please do bug me about it. I want to make sure none are lost! Kristen

Congratulations Maxine! What a cutie-- with a full head of beautiful blonde hair! Ah, how the boys will drool someday! ;-) I'm glad to hear that all went well and that you were able to be there to hold your granddaughter. What an incredible treasure in the midst of so many storms for you. Kristen

Oh Morgan-- as if losing Chloe wasn't already too much! I'm so sorry you lost another beloved furry family member. ((Big hug)) Kristen

ajw-- I'm so sorry to hear the melatonin didn't work out for you. I ended up being sent to the ER after my first dose and had a fever for a week afterward. The people at the ER couldn't believe that I would react with extreme tachy, shakes, nausea, and a fever, but that's exactly what happened. So, just wanted to share that body temp can be affected. It was in my case. Also, I'm sorry to hear you were being accused of bad time management. It's hard for us because we not only have to manage time but also energy. That is a very different thing, because you can always estimate how much time you have left to do something, but we have no way to predict our energy/functioning levels. Hang in there-- Kristen

Thanks for letting us know about this, Sophia! I saw a post on another message board about another "mystery diagnosis" which offered DVDs of a particular episode. According to the post, it sounded like the source was the mother of the patient on the show. Do you think Linda might be given a DVD of her show that she would be permitted to copy/share? Just an idea. I don't know her personally. Kristen

I mailed the second group of books today! Still have a few left for those who are interested.

LoL-- peeingastormmorgan...hahaha Several years before I was diagnosed with POTS or had any debilitating symptoms, I suddenly had urgent, frequent urination. It was so bad at times, that I could barely make my drive from home to school without feeling like my bladder was going to explode. We are talking EMERGENCY! I noticed I was urinating at least 8-10 times a day, and it was getting in the way of my college classes because I would inevitably have to leave class, which was definitely frowned upon. My point being... I didn't have POTS or know that I had it, so I wasn't salt loading or water loading. In fact, I was drinking the same small amounts of water I always did, but the problem sprang up out of "nowhere." So I went to a urologist who initially took me seriously because I tested for high protein in my urine at the office visit. But eventually after some more tests, she dismissed it as a false positive and wrote me a nice letter, which I still have, telling me nothing was wrong with me. Fast forward to my POTS diagnosis, and I find out that the urgent, frequent urination is a dysautonomia symptom. It all finally comes together with my IBS, my dizziness, near faints, high heart rate, "panic" attacks which where actually just adrenaline surges...etc etc. So, my point is, I think that this urination thing can often be blamed on us drinking a lot of water, but I think that it's another problem entirely with how our bodies handle fluid regulation in the first place. After all, many of us are hypovolemic, so maybe our bodies are fooled into thinking we need to be getting rid of water when actually we should be retaining it. Using Florinef is actually just trying to fool our bodies the other way, into retaining it. Anyway, I'd be really interested to hear other people's ideas or articles that you have read. This has long been an interesting/annoying issue for me. BTW, midodrine made it 10 times worse to the point where I almost had an accident in my friend's dad's car!! Yikes!! All this talking about urination sort of makes me feel like I need to go now. Kristen

Hi Ernie-- Is there any chance you have gastroparesis? If you do, the diet for that is very different from IBS. So just checking-- did this doctor (or another) do any tests to eliminate other possible diagnoses??? Lina is right, there is usually always something that can be done to make you more comfortable. You will probably have to try a number of things before you feel more comfortable, but diet changes and supplements can most likely be used to increase your comfort. I have had digestive problems almost my entire life. I lived with lactose intolerance for a long time before diagnosis. I also had IBS for a long time before diagnosis. I've tried many things to help my symptoms. If you have true IBS, a fiber supplement once a day may help. Citrucel is the one I use because it does not create gas like other fibers. I mix the powder with a little water and juice, and it keeps me regular-- helps me avoid constipation, diarrhea, and cramping. It was a bit rough getting used to it at first, but after a day or two, my system was used to taking it. I also, like lina, eat multiple small meals each day. Large or rich meals give me symptoms. You can experiment with elimination for dairy or gluten. Ultimately though, if you just have IBS, you will find what works best for you and what triggers your symptoms over time. (A food diary is sometimes a good idea.) Please message me if you want to talk more about it. Kristen

I mailed the first group of books today! Keep those addresses coming!

Hi Mary-- Midodrine has a relatively short half-life in the body. Maybe you can talk to your doctor about reducing your evening dose or not taking your last dose of the day as close to bedtime? Kristen

Hello all-- The first box of books has arrived, so please PM me your address if you would like to receive your free copy of "Where is God When it Hurts?" I've been cleaning out my inbox like a good little girl, so there should be plenty of room for your messages. A big "thank you!" to those who have sent kind and encouraging messages to me! I am very grateful for your uplifting words. Also, for a few of you who have sent addresses already, I have them saved and ready to go. I hope to be shipping the books later this week and will update here if anything changes. Kristen

Hi Sandyshell-- welcome! Has your headache pain lessened since your POTS diagnosis and new medications? It's so hard how our illness changes the way we "thought life would be," isn't it? Glad you found us here. Kristen

I've definitely dreamt about passing out. I also have limitations in my dreams (can't stand long) and actually feel ill in the dreams (sore throats)! However, once in a while I'll have a great dream where I'm healthy. Once I dreamt that i went on a vacation by myself, drove, went shopping, and was meeting a friend for lunch. I kept marveling in the dream about how well I felt and how much I could do. I was pretty sad when I woke up and it wasn't real. I think medications can cause us to dream more or more vividly. Also, dreaming is a way we sort out our feelings, so if illness is our main issue in real life, it makes sense that our feelings/fears would surface in our dreams. People always marvel at how well I can remember my dreams and their details. It's interesting that you have the same thing, Mary. ~k

I find many people are interested in my compensating maneuvers and how they work to make me feel better. (like drawing my legs in to my chest or sitting cross-legged) There may be question as to how moving and walking can be easier for us than standing still for the same length of time. Also, some people in your class will want to know "if this could happen to them" since young people can get it. How do you recognize the initial symptoms, get tested, etc. Good luck with your presentation, Mary!

Hi Harper-- Welcome to the forum! Beta blockers can definitely help reduce tachycardia and make you feel "calmer." I was on a beta blocker for many months after my diagnosis, and enjoyed not having that constant racing heart feeling. However, I personally suffer from low diastolic BP so the beta blocker only lowered my BP more. When I went off of it, I had a higher heart rate again, but felt less like passing out, so it was a positive trade-off for me. You might want to talk to your doctor about monitoring BP if yours runs low. Take care! Kristen

HooRAY!!! for Fever-Free!! I've been thinking about you and praying for you. It's wonderful that there is a definite cause and an apparent solution! no witty words to offer-- just happy for you Kristen