Raisin

Srb, I am coming to learn that so many of us (even those not dealing with a chronic illness but also experiencing the struggles that life brings to us all ) put on a "brave face". Maybe the true brave face is the one that shows vulnerability, sadness, regret, fear, etc. at least to those with whom we think we can trust with those vulnerabilities. For instance, if I was with a friend and they broke down in tears or discussed their fears, I would be honored that they could trust me enough to express themselves. I certainly wouldn't judge them as I can get some powerful tears coming down my face as well at times! My anxiety can disable me at times just as bad as my Dysautonomia! my motto as of late is "everyone this side of heaven is struggling with something." I think that in my case, the more I try to squash what I am really feeling, the bigger the feeling becomes. It's like it gets stuck inside and then grows. So, you were brave in expressing your struggle. Congratulations! You rock! Thank you Katie for this topic. You rock too! ☺️

I feel so bad that you can't get your Midodrine! I know it really helps me so much so I think I know what you might be experiencing. Why wouldn't the pharmacist be more helpful for you? They should be aware of its importance. I hope you get it filled soon! Best wishes!

Thank you for bringing this up! I have always tried to hold a philosophy of do no harm in this world. I am reminded by you all that this also includes me. I have always held very strong compassion for others but I can get mired down by thinking that I am more of a burden to others. God made me this way and I am on a journey just like everyone else. My journey counts too. My compassion needs to be extended to myself. Sometimes all i can do is pray and ask God to be with me and stand next to me. When I am very ill, I imagine an angel with giant wings covering me and protecting me. I am thankful that we are able to support one another. Thank you thank you thank you!

I got migraines as a teen and they seemed pretty much hormone related. Severe pain at the time. Then they changed as I got older to just ocular migraines without the headache where I will only see half of things as I look around (half a stop sign, etc.) . Gets scarey because I can't drive home like that. Last year, then, I was diagnosed with an atypical migraine where I had all the regular stroke symptoms (major left side weakness, slurred words, etc.). That took 5 days to regain the function in my left side. Now, I will get a headache but not bad and I can knock it out with excessive migraine. It is interesting that so many of us are experiencing migraines.

Well, I got it! I don't know if it is a different manufacturer but the pills look the same. I got mine at cvs. I should have asked them if they were having any trouble with it. Didn't do that because we were discussing cooking and spices as my friend there is from India and even crushes his own cinnamon by hand. Lol! Since I have been ill, I have gotten to know everyone at the pharmacy very well.

Hello. I am supposed to pick mine up tomorrow so I will let you know how it goes!

I am sooooooo glad to hear you are feeling better and in my opinion you did all the right things! You reached out, researched and took good care of yourself at a time when you probably didn't feel like taking good care of you. Sleep is so very important to stabilizing a mood, don't you think? I know it is critical for me. A lost job is a bummer but I am joyful that we don't have a lost Potluck! Life can sure throw a curveball sometimes, eh? Please continue to take care of yourself and let us know how you are doing. It sounds like you are saying the depression is still there a bit but is much more manageable, now? I am glad and wish you a continued recovery. Virtual hug is sent your way!

I am sorry you are struggling GJenson. I tried to look up Vanderbilt and MCAS. A doctor named Dr. Shibao Was mentioned as writing a research paper re MCAS and autonomic dysfunction and she is a member of the autonomic team there. Maybe this will help? Not sure. Maybe you can get an appt with her while you are there to see the cardiologist? If you Google it, maybe you will find something. Good luck!

Oh boy. Sorry to hear this Looneymom! I have been using antibacterial stuff like crazy and anytime I hear someone cough or sneeze, I feel like I want to put a bag over my head! Lol. Hope you stay well and well wishes to your hubby and Tyler!

One more thing....I learned that my dog loves me and is always up for a good nap when needed!

I have learned to do what I can. If I can get out and laugh with a friend, I do. If I can't get out but I can move around the house, I try to knit a scarf for someone who has been kind or organize a drawer or two. If I can't get out of bed, I try to call someone to encourage them. If I can't do that, I pray for others and thank God for my foam mattress and my blankets. If I can't do that, I try to hang on and hold on to the hope that tomorrow will be better!

Yes. I also have anxiety. Found out my norepinephrine shoots up when I stand or sit up and therefore, I am feeling like there is a lion in the room yet I am not anxious about anything in particular. It makes me feel better that it is probably physiological but I still find it very difficult to manage. I do take a benzodiazepine which helps but I realize there are a lot of pitfalls with this. I sometimes get pretty down as well and can't take an antidepressant. I try to find anything that makes me laugh as that is so healing for me. One thing I have learned is that I shouldn't be afraid to ask for help when I need it. Depression can really skew my thinking. I can now see when my "red flags" pop up. Dealing with a chronic illness is a new challenge for me so I am learning and growing because of it. I am hesitant to say this is a blessing per se but I know I will be able to use all of the things I am learning to help others some day. We are all on a journey and I feel grateful to be on this forum! I guess what I am saying is "yes! I can relate!" prayers to you. I also can say to you that a cooling vest saved me this past summer! I got mine on Amazon and it wasn't too expensive. Summers are the pits for me because I don't sweat other than my neck and forehead. I never knew that our whole body is supposed to sweat until the doc laughed when he told me it took forever to try to get my big toe to sweat. Hahaha!

woooooot! Wooooot! Welcome!

Hello sideofsalt! (Love love love the name), I also will feel ovulation sometimes. I kinda laugh because I will be walking around and then I get a sudden ow! Pain and like you, it goes away although mine doesn't last for a whole 24 hour period. Sometimes cysts can also cause this type of pain (usually benign). I would recommend a gyno consult (in my opinion) or some health systems have pelvic pain specialists as they can check things over and they know where to press to check the different types of pain. It is a bit difficult to figure it all out as our abdomens contain a lot of stuff! Lol. EGorman, I hope you feel better soon!

Though you had some troubles, it sounds like you were right to give it a shot! Congrats! Music is so healing. God bless!

I had pain in my lower right side. It started as a pain across the whole lower abdomen and then focused right where me appendix was with all the typical symptoms. (Hurt more after the doc pressed on it and then let go). They then did a CT and my appendix was slightly swollen. The doctors started disagreeing that it was my appendix and the surgeon in the hospital actually didn't believe me at all. Two weeks later, I saw his partner (who had removed my gallbladder before) and he believed me and did an appendectomy as well as exploratory. He then said the endometriosis was attached to the appendix and was invading the wall. It was also attached to my ovary as well as a few other places. I also remember getting very bloated at one point but I don't know if that is a normal symptom or not. I was lucky the second surgeon took me seriously as my appendix could have burst. I hope that was a learning lesson for the first surgeon. The endometriosis pain, for me, is a pretty sharp pain but usually quick and sometimes feels like a pulling on my hips (if that makes any sense). And, it is worse during that time (you know what I mean). I do know, though, that ladies feel different pains with endometriosis and that may be because it can kinda locate anywhere. It is usually very thin (like scar tissue) and therefore doesn't show on a ct. That's the bummer of it. Someone has to put the pieces together and consider endometriosis as a cause of chronic pelvic pain. Sorry so long a response! Lol.

Oh boy Sarah! Sounds promising! Sorry I have been off the radar a bit but I am still sending you good wishes.

I just wanted to say I am sorry you are experiencing this GJenson. Would a 30 day holter monitor catch a his or not? It would be nice to get an episode on paper somehow. God Bless.

I also have endometriosis. I haven't heard of a connection myself other than a mention somewhere about it is being thought of by some as another type of autoimmune issue. I can say that my Pots stuff hit hard right when my abdominal pain got to a point where I was hospitalized and I had my appendix out. They then saw that endometriosis was in quite a few places including attaching itself to my appendix. I will also search for what Issie is speaking of. Sounds interesting. Sending you well wishes.

i am so glad you found a doctor that seems so understanding and helpful. I also understand it will take time to process all of this information. And you are right, it is different postulating about a diagnosis and then actually receiving the diagnosis. Glad you are going to enjoy some good foods and friendship. Nothing better than that!

So adorable! Thank you!

Your words are very wise and I thank you for sharing. I was actually thinking about cancelling a pulmonary consult because I don't want to hear, " well, you are just deconditioned". Because of your input, maybe I will keep the upcoming appointments, even if they do end up saying that. Very important, though, is the fact that you are still dealing with illness and you have made friends here so you shouldn't leave us! Your words kinda sounded like a goodbye? I hope not. We are all like the island of misfit toys here. All different but we share a common ground. Santa will not forget us. We just have to form a family here and you are one of us. God Bless.

I am grateful that you wrote about this. I didn't realize that I was doing the same thing re finding the cause. I am a "why" person. I, like you, was so involved in trying to "figure it out" and then that became overwhelming for me though I also felt that if the cause was found, I would experience a great sense of relief as well as a possible cure. Now, I have been told that I am part of the 30% of folks that the cause remains elusive. While I like to feel " special" in any way I can usually, this is not the "special " that I ordered. Lol. I still remain hopeful, however, as a have a good team of docs now so I feel like they are on top of the Dysautonomia and now I feel my only responsibility with them is to keep them apprised of any new symptoms, experiences, etc. just in case that will give them any further clues. I also see a Psychologist now that I think "gets me" and I can't tell you how invaluable that feels. I see my vascular Pots guy tomorrow and I think I will ask him to not give up on me and to keep me in mind when he hears of new treatments, possibilities, etc. this place has been so helpful (the forum) for me also. To sum up the confusing post I am trying to write here...I hear ya and I am right with ya! Sending warm wishes and soft blankees....

I also have sensitivity to Hydrocodone and get nauseous and clammy and feel like I will pass out. Dilaudid made me itch like mad in the hospital once. But, morphine was fine. In other words, I am sure that something will work for you. I may have a surgery coming up in the future as well. Best of luck to you Cleo!

Rejuvahealth has great fun compression socks and thigh highs as well as tights. I have a pair of sheer black with polka dots.