JaneEyre9

I wonder if their confusion has anything to do with the similar puzzle-piece logos for awareness. I think the "puzzle" idea is so accurate for dysautonomia.

Great picture of you both!! It's so neat that you get to spend time together now.

Carla--I'm very sorry to hear about your dad passing away. (hugs)

I think above all, it's important to look for people who share similar interests/values and who are compassionate. I was lucky in that I was starting a relationship well before I became disabled by POTS, and though it took time, the person I was dating managed to observe and learn what I was going through and how to adapt. The key was that he wanted to learn, and I was willing to be patient and "teach" what my limitations were and why. He decided that the things we could not do together because of my health weren't that big of a deal. The important thing is our connection and the fun we have just talking together. It's not as easy to start a relationship when we are already ill and searching for the right person to jump in. I think if you find a person with a kind heart who has suffered, you will have found a gold mine. There is something about talking with people who have endured pain that really helps with forming an understanding connection. I find that just with general friendships that I instantly feel bonded when I hear someone tell me about their chronic illness or other forms of pain and difficulty. You guys on here who share openly really show a great deal of strength, and a girl who has experienced difficulty will appreciate your strength of character and the will it takes to live well with a condition like this. The same goes for us ladies-- I think there are men who are looking for a woman of inner strength and maturity that comes from enduring hardship. Online dating is good because it removes that initial physical demand of meeting and conversing while our anxious hearts race away. Church is another good place, or some class you can handle that provides a quiet activity-- like a writing, art, pottery, or bungee jumping class. Just kidding about that last one. Classes/church provide a common ground for starting conversation and also start the relationship based around a mutual interest instead of focusing on illness or problems right away. I think that a great way to tell people about your illness is if it comes up in conversation, be brief and give a general summary as you would any acquaintance, then answer any followup questions directly and succinctly. It's really important for you to see if the person is even someone you might like before getting into the nitty gritty details of symptoms and everyday life. I think that stuff comes out in time as intimacy increases between two people.

I take Nature Made Super B-Complex. I love it-- no side effects, which is rare for me! I take it with food every day and have felt improvement while on it. It has 15 mcg of B12, as well as other B vitamins, vitamin C, and seems to be just right for my needs. It can make your urine neon yellow, so don't be surprised if you try it.

This may be something you've done already, but regular ibuprofen started *before* my period really helps cut down on the severity of my cramps. If I wait till I have cramps already, it's too late. I start Motrin usually 3-7 days before flow and continue through the heavy flow. It's made a big difference for me. Kristen

Sorry to read this distressing news, Maxine-- how did the catheterization go? I prayed for your family just now. Kristen

Thank you thank you!! :-D

Hey Julie-- Happy Birthday! Hope you had a good day with your family! Kristen

Thank you so much, ladies! I was very blessed today and was reminded in a special way of God's extraordinary love for me. Thank you both for the kind wishes!

I personally feel better on a very low dose of Florinef. When I was on a higher dose, it caused side effects that went away on the lower dose. I've tried going off of it altogether, but I still need a small amount of it all the time. I agree that the store opening probably threw your body out of balance, and it may take some time to get back to baseline again. Hope you feel better soon. Kristen

I hear your frustration. It's so upsetting to have all this stuff we want to get done, and without any warning, we then have to rely on other people to do it while we stay in bed. Talk about feeling out of control! Obviously we are not lazy, but our emotions can really get the best of us when we feel like we can't do the things we used to do. The past 2 days have been like that for me-- and to a lesser extent, the past couple weeks. I noticed that you live on a farm-- do you ever use pesticides/herbicides on your farm or around your house? I only ask because your symptoms sound a lot like mine when I am exposed to pesticides (even very small amounts, as I am chemically sensitive). Sometimes our flare-ups have a cause, and other times they are unexplainable. I'm sorry you're going through a bad flare. Kristen

Radha-- I use Ocean Spray saline nasal spray. I don't sniff it up my nose, but just squirt it in and gently blow whatever it loosens. I do that when I feel stuffy, and it helps a lot. If you are getting clogged specifically when you eat, have you looked into food allergies as a possible cause? Lots of people find the sinus rinse to be more effective, but for some reason, it made me feel more uncomfortable when I was done. We are all very unique and individual in what works and what doesn't!

I was diagnosed with non 24-hour circadian rhythm disorder by a sleep specialist. My sleep progressively shifts forward so that my "nighttime" is later and later, eventually drifting into morning, afternoon, evening, and back to night again after a few weeks. I tried everything at the beginning to stay on a regular schedule, but the harder I fought my body, the worse I felt. I agree with others who recommend a sleep doc. Documenting your son's sleep times on a calendar (including naps) is also a good idea. There are some non-drug solutions to rhythm disorders. One that might be helpful is bright light therapy. Is the sleeping problem new for him? It could be a response to a medication your son is taking. These are all just ideas. A sleep doc is a great place to start if you are wary of starting strong meds.

I had slightly different circumstances, but videotaped classes got me through the first part of college. I highly recommend it if the teachers are willing to work with you. Kristen

Hi Michele-- When I did cardiac rehab several years ago, I was at my worst, and the program was sort of tailored to my needs through trial and error. I think the heart rate monitor was the most important thing for me because it kept me near or below my target heart rate. I also found that lying down flat on a bench after exercising helped my BP to stabilize. Additionally, when I began, I didn't do long sessions of exercise. I had to listen to my body and stopped after only a few minutes. This got better at times, but around my period or on bad days, I would have to stop if I became too symptomatic. My tech developed a dizziness scale (from 0-4) with me so that I could communicate if I had a spike in lightheadedness. I also noticed from my documented BP and HR over time that I did better on less beta blocker, so the charting of my vitals was also very helpful. Hope this helps! Kristen

I agree with Lisa-- I've found that the best natural way to clear out my blocked nasal passages is a saline spray. The sinus rinse (or neti pot) can be a great alternative too. I take Claritin daily and have managed to stop using Nasonex for now. It was giving me bloody noses rather frequently, so I switched to the saline spray, which I love! Kristen

Are you on a fiber supplement? I was on Bentyl for a short time many years ago for my severe stomach cramping, but daily fiber therapy was the big help for me.

Yay Morgan!!!! It made me so happy to read this. I wanted to shout a big "AMEN" when you said that the doctor doesn't have to fix the problem, but BELIEVE us and AFFIRM us. I'm so happy to read this post. Thanks for telling us. Even better that he did it when he thought you were asleep. Shows what kind of doctor he is-- one who takes you seriously and has character. ClappingforyouKristen

Glad I could help! It's ironic that I was able to help you on this topic because it has long been one of my weaknesses. My mom actually suggested that technique to me a couple years ago, and when I tried it, I was amazed at how well it worked! So don't feel silly-- I didn't think it up either! ;-) Kristen

I have always had trouble saying "no" too. One trick that has helped me not to give in "in the moment" is to say, "I'll have to check my schedule," or "Let me get back to you on that." That gives me enough time to get out of the conversation, make a rational decision of "no," and then have a plan to bring it up in a way that makes me comfortable. I can say, "You know, it would give me so much pleasure to see you and help you out, but this time is really not going to work out for me." Straight and to the point works best. The less explaining you do, the better. When you go into lengthy explanations about your health or other things, it can sound like you are defensive or making excuses. Worse yet, it can leave openings for the pushier friends to make suggestions to try to "help you" get around your limitations so they can still get a "yes" out of you. Kristen

Thanks for all your hard work, Nina. I really appreciate the how reliable and easy to navigate this forum is. It's because of you and the other mods that this is such a safe, comfortable place to share and get support. Kristen

Glad to hear the good news!

We can't win-- Desiree is accused of needing a psych eval for being "too happy," Dizzy is accused of being suicidal for being "too sad"! What the heck!? Seriously, the main problem here is the particular doctor's inability to be humble and say, "I don't know." Scary words for a person who spent 21 years in school and many additional years in training. Not knowing isn't a posibility for them, so it's automatically our fault. Thank goodness not all doctors are like this and remember that they are human and don't know everything. Dizzy-- As a side note, it is HORRIBLE beyond words that your religious beliefs were called into question by a medical professional. First of all, it's not a doctor's job to talk about religion to the patient, and second of all, even if that was ok to do, people of great faith get sick all the time. I wonder how that doctor felt about Pope John Paul having Parkinson's-- did he not pray enough? ;-) Health is no sure sign of piety, nor is illness a sure sign of wrongdoing. We are all subject to suffering here on earth.

Hey Emily!!!! You are the best! I ordered peanut butter chocolate chip cookies from the Molasses Bakery website on Monday, and they arrived THE NEXT DAY! Last night we opened up the package (which was technically for my grandma since she is the confirmed gluten intolerant one), and we all tried a bite. Well the bites turned into eating several cookies. These cookies are seriously amazing. They come in a cute box, and the taste, texture, and quality are all superior to the "regular" gluten-containing chocolate chip cookies that I made from scratch last week. In my opinion, this company is everything it appears to be and more. You could easily send these as a gift because they come in a sealed, labeled bag that is placed in tissue paper in a printed box. The taste is what I can't get over. I've been eating samples of my grandma's gluten free stuff since I was a kid, and this is by far one of the best gluten free things I've tried. I can't tell you how enthusiastic I feel about this product. Super fast shipping, completely fresh and homemade tasting. I can't say much more. I will definitely order from them again. I've already eaten 2 of my grandma's dozen. The fact they are organic and dairy free is a total bonus for me-- no worries about my IBS flaring up. I highly recommend ordering from this site-- the customer service is fantastic too. Very friendly and helpful. Kristen