Joann

CarrieJessica, Wow. It sounds like it has really helped her. I know from reading some of her posts that she is really ill. She has the iv for 2 months, if it helps her, i wonder if they will be able to continue after the two months?

Well, one of my problems is trying to figure out that fine line of pushing but not pushing too far. I am hoping these upcoming tests will reveal something. I need some kind of starting line. Maybe it is just me but I need a diagnosis. I did finally get a doctor say she would classify it as a type of POTS, but not sure what. But another doctor said may not be POTS, may be another autonomic problem. I need to know. I need to know what it is so I can figure out what to do next. I have tried the exercise route, it doesn't seem to help me. I am walking, but anything active seems to make things worse. I have had several times I begin to feel better and then I go right back to awful. But in the meantime, I am trying to figure out what I can do, if I can no longer do my job. I am/was a librarian. I was out for eight months and my boss let me come back one day a week, 6 hours, but there are money problems there and so I may get no hours this spring and summer. If my boss retires, I may not be able to have my flexible schedule. So, what can I do from home and make some of the money. Not sure. But I think this summer, I will explore this more. I am wondering if I should stay in the research area, or try something entirely new like a craft, or gosh knows. My daughter is extremely crafty at 12 and is actually selling her things online. So it is possible, but I need to figure out something that I can do well and people would want. I need some type of work, to feel fulfilled. I do know I need more interaction with people. I never realized but I am a people person, I crave others. When I am around people I am more alive. I don't know if you read the post recently about personality. Well, there are a lot of introverts on this site. I used to be very, very shy and I still can get that way. But over the years, I have gotten over this more, I think because I realized I needed to take charge or things just wouldn't get done. I still do not like confrontation, but I love to be involved and active with others. So, when my health allows it I need to be with others. That is what I am trying to decide, what is the best way to be around others. Trying to think of a way to join a group or volunteer, but in a way where I don't have to worry about letting people down when I can't make it because of health. I am trying to find friends in the area that are home during the week and understand about chronic illness. Most of my old friends are busy living life and it hurts but I understand. But when I am home alone, this crappy thing gets to me, way too much. I wish in a way I was more of an introvert. I used to love to read, but since I have been ill, I actually am not able to do this for long. I feel too guilty doing it, crazy huh? But I feel like I should be more productive and cannot enjoy one of my favorite activities. I enjoy this site, but wish there was a face to face support group in area. When the weather is warmer, I will be able to at least talk to the neighbors. My daughter plays travel ball and I am actually looking forward to this upcoming season. When I am not in the middle of a bad flare, I go to these tournaments and it is perfect. I get to see my daughter play, and meet all kinds of people. I don't usually have a problem with heat, so all I have to do is walk to the field and then I can sit through a day of games. If I feel like walking I can walk. I feel like everyone else. Most have no idea I am ill. So I will get my people fix. Also,the coach knows I am ill and I have told him, if he needs anything done that can be done at home, like computer work, I can do that. So, I guess I am working on this new me. I am still having a difficult time letting go of a lot of my old me. And struggling with letting me or others define me by this illness. But you are right, it does make you reflect on your self. Being a type A person in a body that won't cooperate is a challenge, and I am trying to relax some,but I don't think you can change completely. So I guess us Type A people need to figure out a way to be Type A, in a different way?! My goal right now is to figure out how to still be a great mom, even though I can't do things I want to, find a way to be productive and make some money, find a way to be around people more, and find a doctor that will help me figure out what is going on. Once, I get those things more settled, I would like to become an advocate for invisible illness. I have been thinking about how I would like to do this. Sorry for the rambling. Obviously, I am in the beginning stages of this journey. Maybe my goal should be to be more concise! LOL

My daughter is due (over due, actually) for some vaccines and I am a little anxious about it. I know that they are important, but you hear about side effects. Plus, my brother and grandfather both are allergic to tetanus. She had hers when she was a baby and was ok, but that is one of the boosters she needs. Plus, she is a mini me, and I already worry about her getting POTS, like me.

Just wanted to tell you, I have been having a few bad days and Bella must have sensed this, she will not leave me alone today! Right before a bad flare, I was picking my daughter up from school and Bella was trying to climb on me in the drivers seat (I was parked, not driving)she was crawling all over me and kissing my face. Right after that, I had a flare, it is like she knows. I had to give up sitting in my rocking chair, because she keeps climbing on top of me, and now am sitting with her on the couch. She is not a small dog part lab and part German short hair pointer, she thinks she is a lap dog! She makes my good days better and my bad days more bearable. When I have to be in bed, she will lay right next to me too. I think if you can get a pet, it is so worth it. I know they are a lot of work, but they bring so much love.

My bp goes up like that and they have put me on two bp meds because of it. It kind of helps, but still flares pretty high. I am thinking maybe they need to give some kind of meds that are quick acting. As to diet, any suggestions for those that hyper?

Awesome. Good to hear someone is getting better!

I agree with a lot of you, it seems like each of us is different. Walking seems to help me, but stairs are a big no-no. I seem to need to do very gentle exercise. At first I could only walk very short distance, but now I am walking 1 1/2 miles at a time 5-7 days a week, I am hoping with good weather to slowly increase. My hope is that as I increase this, maybe I will then be able to do stairs and other things. But even if it doesn't, it has helped my body re-gain some strength

Hate this! Yesterday, I started to feel a little better and thought maybe I was not going to flare too bad. Woke up last night, worse than I have in a long time. BP was high, but oddly enough my heart rate was low, and that never happens.First I was sweating and head pressure and all that fun stuff, and then I was shivering like crazy. This morning it was getting better and was feeling a bit better. Took one of my meds and now feeling bad again. Is it from the meds or just coincidence. So tired of trying to figure this out. Now I am getting this burning feeling in the back of my throat off and on. But I think if it was Gerd it would happen if I was lying down, it is happening out of the blue when sitting and standing. I think I have some type of dysautonomia, but thinking it is something other than pots. None of the symptoms makes sense or go together.

I am so sorry. Hang in there don't give up. This is a good place to vent and there are many here that can identify and offer you some advice. I had two miscarriages before getting sick and they were devastating, I can't imagine your pain losing your baby. Have you thought about talking to a counselor, or a religious pastor/minister/, or maybe even a close female friend or relative? I am sending you positive thoughts

Lel, I too have lost much of what I felt defined me. I often feel like I am not "whole" or pulling my weight. I am trying to find a new "definition" of me, and some new goals or new things to add to my life. This dumb illness/health problem has over taken my life and my families life for way too long. I do not want to be thought of as the "sick mom/wife/sister/" or the "hypochondriac mom/wife/sister" I want them to think of me in some positive light, but I think first I have to start thinking about myself that way. But I know I will never be that person that they say "oh, she was always so happy, never asked why this happened to her, she found blessings in her illness" I am not that person, and never will be. But I will try not to be the bitter complaining person also. I think its that balance of not giving up all of our old self and finding our new self.

Khaarina, My gyn will not put me on bc because of my high blood pressure spikes, he is concerned with strokes and blood clots. . I had wondered if that could have helped some of my problems, but nope. Glad it is helping you somewhat. I guess I should have said that most of the time I am having high bp problems and not low bp.

Any suggestions that will help during these times? This past month, I had been managing my symptoms somewhat well (my new normal, anyways) and then this time of month came. Now I am really struggling again. I know what my PMS symptoms are and it is in addition to those. I am extremely fatigued, I mean I cannot keep my eyes open, I am also having more of my POTS pain symptoms and oddly enough feeling extremely fearful or anxious, for no reason. As usual, most of my symptoms are on the left side, but especially just above the hip both on the front of torso and on the back. Not sure if this is the area of kidneys or what? I am drinking plenty of water and powerade, but as usual when I feel bad I have no appetite. And having more of the twitching, and electrical shock feelings off and on. Would some vitamin or mineral be helpful? or is it a hormone that I just need to wait it out?

So what are they suggesting you do for the next three months.

Totally agree. I have told doctors I would do certain actions for them to monitor my bodies reactions and they always say no.

Sign me up!!! So nice to see some positive results

Have your husband talk to him. It's not right, but often you get better response when a male complains. When us females complain, they just blow us off, as the crazy, complaining woman. But when a man complains they often get results. When we have to return something, I have my husband do it. I go to return it and get attitude with a receipt! He goes and no problem. The current doctor I am seeing is just ok, she really isn't much help, but her office staff is horrible. My previous doctor, I loved all the staff, and actually I loved her, but she didn't believe I was sick. She would not test for anything and would not listen, 6 months of telling me it was anxiety and Gerd. So I switched to my current doctor, she is willing to test, but just doesn't know about POTS, and is with a small local hospital. So I think of her as my temporary keeper of the gate. I go to a cardiologist for those symptoms and am waiting for CC doctors to point me in the right direction. So I think it is tough to find a good doctor, a good staff and one that will help you. Good luck.

My daugher is twelve. Before this, we rarely watched t.v. or movies, now we have many programs we watch together. She is also a crafter. We have put a card table in the living room and she is able to do crafts in the same room as me. Before we would have gone upstairs or in the basement for many activities, but I am restricted now to the main level. So our living room is messy but our central living area. I also have many of her friends over. They are at the age where they really entertain themselves, so if I am feeling bad, I can monitor from the couch or rocking chair. They love making homemade pizza, which is really pretty easy to have ready for them. When I am feeling okay, I take advantage of it and take her and her friends to DQ, the mall or whatever quick place they want. She does mention missing all the stuff we used to do, but I tell her we have to be happy we can do what we can, because last year was awful and this year is a little better, hopefully it will continue to get better. If your child is in school, how about after school activities? Our school has them right after school, so I encourage her to join them. So instead of picking her up from school at 3 I have to pick her up at 4, it is still just one time. Often you can have another parent bring your child home with theirs. In fact the later the better, for many parents that work. Sports are tough, but again maybe another parent may be able to help. Your two older kids, may be able to help take your youngest when you or your husband can't? But the others are right, your love and presence is what is really important. Hopefully, they will realize that we are there for them and love them whatever we are able to do. Plus, sometimes the things that they really remember are the things you wouldn't haven't even thought were important. The notes or pictures you put in their lunch, cuddling on the couch, playing their favorite game for the millionth time.. So try not to beat yourself up too much. We all feel the same way.

I used to be extremely shy and introverted, but as I get older, I am not as afraid of what others think. I think being a mom also, makes you become more extroverted. I really find it difficult to choose on many of the questions because I am different at different times and situations. I also used to be much more of a perfectionist, now I am like that for somethings but not for others. Prior to POTS I was definitely type A. I still am mentally and emotionally, just can't be that way physically. I am sure I really annoyed many - worked, prepared meals from scratch, active at daughters school, including holding office in committees, etc.. The one test I took online said I was ESFJ or EIFJ. I am also thin, somewhat tall, kind of pale (although I can tan well), and was quite athletic prior to this. I have been told Dr. Grubb said this is often the case. Wish they could figure out why, maybe we could get some answers then

Bebe, a beer sounds sooo good. Wish I could have one with you. I totally understand your frustration. I have dealt with similar issues. Currently battling, with doctor's office and insurance. One is a bill from last July. I saw a physical therapist for my neck (this was back when they still didn't know I had POTS, and was told once my neck was better I would be fine?). The physical therapist was in network and one day, she was not in - sick or on vacation-. So someone came to the office to cover her spot, and I guess that woman usually works at another office that is out of network. Sooo, even though I am in the in network office and had no idea who was going to be working on me from day to day, they are saying its not covered. I told them I would not pay that, I was an in network office, so insurance says, that either the doctor's office can cover the bill, or try and resubmit it. It is soo stupid. I also have to battle my November tilt table test, because they say it was not medically needed. ??? Why? Because I do not have any record of fainting and that is their reason for ordering it. I tried to tell them that I do not faint, but get extremely high bp, but the insurance woman said, have your doctor resubmit request. My Cleveland Clinic visit wants me to have a ttt again, and I have had them request a pre request for coverage, I really don't think it will be approved. Ughhh... So, I understand your frustration and so wish I could still drink alcohol, but this stupid illness prevents yet another enjoyment of mine.

Kris, it sounds like you have some great doctors who are really helping and listening to you. I still can't believe how quickly you have been able to get some diagnosis. I hope you are able to get treatment that helps you as quickly. It sounds as if you are frustrated and I can understand that, it seems like it is a very slow process. Hang in there. I have to say I hope I find some doctors that are like yours.

Sorry, I don't have info for you, but I am interested in this also. It has been suggested I switch to this. I have some testing coming up soon, so I want to wait until that is finished before considering changing. If there is a chance to improve, I will definitely try it.

Happy for you! Hope you continue to have more and more good times.

CarrieJessica, I love your blog. I try and keep up with it. I identify and laugh at some of your situations. Laughing with you, of course, not at you. I am trying to laugh more at these things too. Because I have spent way too much time crying and being scared. Just knowing others are going thru similar situations helps. I have gone to an eye doctor last fall, I had the blood shot eyes and I was having sharp needle like pain behind the eye off and on. I was told my eye was fine. No damage. It was one of those franchise eye places and she said vision is fine, good to go. She knew nothing about dysautonomia. I am hoping someone at CC will address it. So far, I have not had the double vision you have experienced, A few times the one eye has gotten cloudy vision, but not bad. (knock on wood, I feel like I am jinxing myself by even saying it!) Lel, I saw Dr. .Shields in neurology back in Jan and he scheduled me for the autonomic clinic tests and to see Dr. Jageu,r a cardiologist this April. Dr. Shields wanted me to go off meds for the tests, but Dr. J. says I don't have too. I also am scheduled to see an internal medical doctor, who is supposed to put all the doctors information together. I think I am also supposed to see a rhuematologist

Good luck at CC this week. I am not going until the 18th and 19th. Are you having tests done? and are you going off meds to do them? Let me/us know how the visit goes. Oh, one last question who are you seeing there? Hope you get some answers!

Lel, It's the act of putting the eye liner on that causes the blood shot vessels. Its as if my eye vessels are extremely fragile. The touching of the area causes them to burst. I am wondering if it has something to do with the bp meds I am on. I don't think it started until after I was put on them. I have asked a doctor and gotten no answers, but I am going back to Cleveland Clinic soon, and I am going to bring it up there. That or its' just another odd symptom I have. Another odd thing, my eyes get better after a hot shower. I do not have a problem with the hot showers like most, I actually (usually) feel better after them. I can get in the shower with blood shot eyes and they are much clearer when I get out. thanks for the suggestion.