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friday7

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Everything posted by friday7

  1. That's so true about not knowing how you'll feel from day to day or hour to hour. That's the part that people have such a hard time with. I guess they can' t imagine that because they haven't experienced anything like it. Usually when people get sick they have an idea when they can' t do something when they can and when they think they are getting better. But I can feel great one minute feel like going out and all of a sudden it all goes away. I need to lie down and I'm done for the day. It's also hard knowing what I should spend my energy on. I like you have only so much energy for the day and I have to choose what I need to spend it on...sometimes I can't even count on having energy to do anything. Or I'll have the energy but I'm too dizzy or whatever to do anything.. that's very frustrating. I guess that's why it hurts so much when people assume we have control over these things. We are trying so hard and then you get criticized for not pushing hard enough. I guess it' s human nature. When you're not experiencing something directly, it' s really easy to give advice on how to handle it.
  2. Thanks so much for your words. I know what you mean about not wanting to accept it. Sometimes I feel like part of the guilt is me not being able to accept that I'm not the same person I was. That I am disabled. That the life I had is no longer my life. If I'm not accepting that, It's like I'm saying I'm well and if I'm well what am I doing laying around the house all day?! So in comes the guilt. But I do have more acceptance than I used to. Somehow I have to accept it without feeling like I'm giving up on ever being well again. I have to accept that now I am a sick person. And this is my life. But that doens't mean it will always be that way. The thing is I haven't always worked . I haven't always been productive. I had a hard time as teenager. I went through a depression for about ten years. And I did a lot of lying around doing nothing. I had a lot of people then telling me what to do. And I had a lot of guilt an eventually a lot of self hate. I overcame the depression and got praise for that..But that reinforced the belief that I was doing something bad before that. The thing is I would have liked nothing better than to be happy , running around with the other kids my age but I didn't know a way to make that happen at the time. So I carried that guilt with me. Until I started to work and have goals and date and get a life. The guilt lessened. I had almost ten years..Then I got sick. I couldn't do those things that people value anymore. I had no way of proving I was a good person. On top of that you get people telling you to push yourself and not understanding. So in comes the guilt. In many ways what I'm going through now is similar to what I went through as a teenager. Feeling helpless, no one understanding, or thinking they understood and telling me what to do and making me feel worse. What you say about having compassion for yourself is true. And I think if that girl I was, was someone else I would have compassion for her. What's frustrating is I know all of this stuff, but yet I keep falling into the guilt trap. But hearing form other people here that understand is good. It reinforces the good things I say to myself. Thanks for your help Susan .
  3. Thanks for your support. I know logically that guilt does nothing for you. If anything it beats you down. It's just really hard to fight it. Sometimes you need to hear from others. I would love to come up with something to say when people like that therapist say the things they do. My first thought when she said "well Anna comes here and she has Fibromyalgia". I wanted to say well good for Anna!LOL But that wouldn't' be so smart to say. I think it might be important for me to let her know how that made me feel to be compared to someone else. I think part of it is accepting I have a different life now and my goals and achievements are going to be different than other healthy people. I really don't care anymore about having a career and money and husband. Well, those things would be nice but right now my main focus is well, me. I think society doesn't work that way. It's all about achieving, getting out there and getting more. So it makes me feel guilty for not doing that..Even if I don't want it. stupid I know. It's hard habit to break. Well thanks for listening and thanks for your reply. It helps. Susan
  4. Rach, thanks for the reply. That must be really hard not having a diagnosis. I have a diagnosis, several in fact:(and I still doubt myself . But I know that you are sick. I can say that because I read you words and I hear myself. I had a friend years ago that used to fake illness to get attention..that's a whole nother kind of talk. I wish people would realize the difference. Anyway thanks for the support. I know myself how if I push too hard I wind up making things worse..It's hard when most of the people you talk to don't get it..But as you said people hear will. That helps. Thanks again for your understanding. Susan
  5. First off please forgive any typo's but I'm not feeling up to reading right now, so I can't reread this to check for typos and I'M not the best typist.;)Sorry, but hey, maybe I'll give you a laugh. I"ve had a hard time dealing with feelings of guilt. Ive been in the house a lot lately and I guess its getting ot me. I"m not bedridden but I 'm just not up to doing much.I know I"m sick. I know I have something that most people don't understand but yet it gets to me, and i start to feel like I should be able to do something about this. Like i"m just not trying hard enough. It's almost like people that get brainwashed. You know how you see those reports on the news shows about people giving false confessions because they just cant take anymore badgering from the police, and they're mind finally gives in and makes them think , maybe they're right. Maybe I did what they said..It's like the same thing. year after year I see doctor after doctor and they say the most hurtful things sometimes. Or worse they ignore you alltogether. And when you look to people around you for support you get things like. "well, When I get sick I push myself to get out" and helpful suggestions like that. SO instead of feeling supported you feel, Guilty. Maybe I"m not trying hard enough. Maybe it's something I'm doing. Maybe I"m just not strong enough. SOmetimes it just gets overwhelming. And i joined a support group but I'm not going to go anymore. Last time I got sick while i was there, and I was afraid i would pass out. Then the therapist running the group tells me how it's alright to come when I'm sick and how this other woman makes it here who has Fibromyalgia. So that's great instead of saying something like. Well you know you'r e body, so if you feel like you're not up to it you'r e the best judge of that. Just know we're here for you. That would be lovely to hear.. But instead she' compares me to this other woman not knowing how either of us actually feels. You then get the feeling of..well Anna nmakes it here so I should..not real helpful. IT's really horrible when you feel horrible and you miss your life and then on top of all of that instead of getting support when you talk about it you get suggestions that don't help because they don't understand. I know it's only human but I wish some people would just learn how to support a person and not give them advice on how to deal with things that they have no idea about. Well I just had to vent. Thanks for reading..if you could understand my typing.
  6. Thanks for the encouragement. I really need it at this point. I too have had some much antibiotics that I wonder about candida. To me that's why it's so important to look for the cause rather than just treating it. I don't think there are any tests for Candida that my insurance would cover. Thanks for the support though.
  7. HI Diane,

    I wanted to thank you for the link you sent me,way back in October.;)

    I've been really sick with a horrible dizziness for the past few weeks and I haven't gotten here lately so sorry for the late reply. I appreciate you thinking of me Thanks so much.

    Susan(Firday7)

  8. I haven't experienced what you have exactly but I have heard that some people have their POTS symptoms exacerbated after eating. I have felt a few times like I was weak or felt a bit like fainting right after eating.I found this weird cause usually people feel better after eating. Last time I had a subway sandwich an I felt faint right afterward..Maybe it wasn' t the particular food but the stuff used in making it. When you're out or use packaged food you don't know exactly what's in it. I guess the best thing is to eat whole foods as much as possible.
  9. Over the past two years I've had one ear infection after another. I've have fluid build up in my ears too even though I had ear tubes put in several times. Only the fluid is supposed to drain out of the tubes when that happens. what usually happens is I spend weeks with my ears clogged and no draining..until I finally get an infection and then they treat that with antibiotics. I was wondering if anyone else suffers from frequent ear infection or fluid in the ears or even just dizziness. I've been dizzy and unable to drive most days for about two years straight. I really think the sinus and ears are the reason but they keep ignoring my opinion. I'm trying to figure out myself why this keeps happening and the doctors (I've seen three plus two GP's) that are not all that interested in figuring out why this keeps happening . I had one say to me ..You can't be perfect..at which point I broke down and cried and said I dont want to be perfect I just want to be able to get out of my house..Didn't seem to get through to him though...He said something like "Just try this ( the same thing we've done ten times before) and see me in two weeks". Sure it was better in two weeks and then in was back two months later. Not that it didn't bother me in between. I know this is not a sinus forum..but I also know that POTS causes a lot of symptoms..I know I have a weakened immune system, but I think there's more to it. First off, I have to take six salt tablets a day plus load my food with salt and drink a couple of gallons a water a day. Just to stay hydrated and keep my BP up high enough. I know I can not retain water. My skin, hair, eyes and so dry. I have to put baby oil on my skin to keep it from flaking and in the winter to stop it from cracking. I have been tested for Sjorn's syndrome and it came up negative. I've seen two neurologists about the dizziness and they can't find anything..One said it might be migraines but he didn't like diagnosis that because it didn't quite fit. I'm starting to suspect that the dizziness I've been experiencing over the past few years has to has to do with the fact that my body does not retain salt and water. I think the excessive dryness is causing the mucus to become so think that it will not drain. For instance the last time I went to the GP she said I had fluid in the ears. I told her it wasn't draining, and she could see that. She told me to use the Neti pot more to thin the mucus..But what happened was the ear tubes were so clogged, when I started using the Neti Pot more often, it put my more fluid in my head and it felt like it was going to explode. A few days later I got so sick the room was spinning, and I felt so sick to my stomach I was throwing up. I realize now that you can't put more fluid in your head if you've got an obstruction like that. So I went to the ENT who said my ear tubes were clogged with hard debris. I asked if this could be caused by dryness, he said yes..But wasn't interested in discussing further. He told me to use peroxide to clear the debris which it did..but that's it. They only treat what is happening at the moment they dont' care why it happens and keeps happening. The thing is I feel at this point I've got enough evidence to suggest that I need more moisture in the sinus..however, it's hard to know what to do. like I said last time I started using the neti pot more the room started spinning. Plus, I've had fungal infections in the past so I'm scared because I don't want to put my humidifier on too much or do the sinus rinsing too much for fear of creating a fugal infection. I really wish I had a doctor that would take some times to think this trough with me and suggest different ideas of dealing with it..I hate experimenting on myself for fear of making it worse. Sorry I guess this is a bit of a rant already. But I just came back from another ENT..the one that put the tubes in. ( my original ENT no longer does surgery, he's over 70, so I had to go to this guy to get the ear tubes put it) He doesn't think I have a problem because now the tubes are clear. I told him what had happened but he just ignored it. I told him how my GP saw the fluid in my ears last month, He started going on about how interns don't know anything and and when I told him my ENT said he saw debris in the tubes two weeks ago, he commented on that doctors age. (he's about 70) So apparently to this doctor if your young or old or a patient, you know nothing. Ugh! I really wish I could see a doctor that treated me as a POTS patient because they might look at things differently. Okay, end of rant.
  10. Thanks for that info. my Level is now up to 28, still a little low. And I was wondering too..the range is up to 100, but what is optimal? I will print out and take that info from the Viatmin D council to my doctor when I go. Problem is most doctors stop as soon as you are in the normal range. But maybe some of us that are Vit D deficient need a level of 50 ng/ml to feel improvement.
  11. I'm glad to hear you Son has had improvement on it. I know myself last time it was low I felt really tired and felt better a few weeks after taking it..I just don't quite understand why I dont see fatigue listed as a symptom on the medical sites. I did do a search for Vitamin D and fatigue", and got a lot of different sites with articles saying it could cause fatigue..In fact a lot of stuff about Fibromyalgia and Chronic fatigue syndrome came up and it told about people having some improvement in fatigue and pain, after taking Viatmin D. I guess your regular healthy person might not feel it if their Vitamin D level was low but if you have something like POTS or Fibromyalgia it's going to make you feel worse.
  12. How are you taking it? Are you getting injections or taking a monthly pill? You said you ached after each dose so I'm getting that you don't take it daily, so I'm just curious.
  13. Did your doctor think it would improve the fatigue? You say you've been on it for six weeks..has your doctor taken any follow up tests to make sure you were getting enough? I'm glad to hear you feel it has improved your mood.
  14. Hi. I know a lot of people that have Chronic fatigue syndrome are known to have low Vitamin D levels. I assume that a lot of POTS people probably also have this issue. My question is to those that have had a Vitamin D deficiency, has it made you feel overly fatigued? I know it's hard to tell when you are already fatigued, but I have felt soo tired lately. I can't seem to get enough sleep. I got some blood tests back and nothing is wrong but the Vitamin D level is low. I know in the past I had a low Vit D level and I felt very extra tired at that time. But when I look up the symptoms it just says muscle weakness and aches. It doesn't sound as bad as this feels. But still I thought, what is the difference between muscle weakness and weakness. Wouldn't you just feel weak? Anyway, I guess I'm just looking for an explanation for this exhaustion I've been feeling lately. I normally dont' feel this tired. I can hardly do anything because I get so knocked out by any activity. OH and I've had blood tests recently, and this is the only abnormal that came up.
  15. Thanks for the info. I guess I was concerned that fludrocortisone might not be that well known for treating POTS. I used to be on a drug that was used for another disease and doctors that didn't understand would always question why I was on it. But I guess the thing was they weren't really doing any research on it. I suppose even if I point my doctor to potsplace she should find enough info to support me using it..But if not I could always point out the resources you mentioned. thanks.
  16. Well that's good to know. I guess it works differently on each person but still it's good to hear that it helped you and you didn't gain much,thanks.
  17. Thanks for the info about the renin and aldosterone. I will have to watch the salt then if I take the tests. I take a ton of salt each day in my food and then six salt tablets. Yeah I haven't been on Beta Blockers for a few years so that's not problem. Only problem is who will give me the tests and will my insurance pay for it. I hate the idea of gaining weight. I've already got so many things that make me gain weight. I have such trouble just keeping from gaining. Although if it helped me enough I guess I wouldn't mind. If I felt better I might be able to exercise more and that could help the weight. thanks again. Susan
  18. Sorry it doesn't seem to be going well for you. Maybe you need to start on a lower dose? I know you're not taking much but I know sometimes some people are more sensitive to medication than others. I always start out with the lowest dose I can on Meds cause I've had problems with meds in the past. Thank you I'll try that site.
  19. Well I tried Mestinon quite a few years ago when I was first diagnosed and I didn't really know about other meds. I guess it was just something that that doc found helpful in some of his patients. In me , I wound up having gastric problems and the food I ate wound up in the toilet a few hours later, so that was not good for me. I am dong better than when first diagnosed. At that time my Mom had to push me around in a wheelchair in order to get out. Now I can walk and use a walker with a seat so if i feel faint I just sit down. But I still can't get out much. I still can't work. I still can't even get a volunteer job. Sometimes I can't even do much around the house. I need improvement. I did have a test for Sjogren's done a while ago. It was a blood test. That came out normal. And I was found to have hypothyroidism last year. I've been taking meds for that and my TSH is in normal range now. The thing is it's hard to know what its causing what problems sometimes. Like when you have POTS , a lot of people have low Vit D, low B, CFs, Fibromyalgia, GI problems, Hypothyroidism, etc etc, So It's like, is the POTS causing me to feel weak or is it the Hypothyroid. or is it, the Anemia, etc. etc. But I know since I haven't had a doctor that was informed in POTS I kind of let that part of it go. I"ve had no doctor that treats me as a POTS patient because of my insurance (Medicaid) I only get so much help. No one I see knows anything about POTS. I've been from doc to doc to doc..and the only one that knew anything about it enough to treat me was the first doc that diagnosed me, and I can't afford to see him. Well I've been treating all of the things that are wrong with me but not the POTS because of this. I feel like it's time to look a the POTS again and make sure I'm doing what I can to treat it right. It's gonna be hard of course because I'm dealing with a GP that never heard of it before me, but she seems nice and I feel if i bring in the right information , she might be willing to try florinef and things like that. But I'm wondering if you or anyone knows of any good clear info on how and why it is used for POTS? Wiki has some good info but I'm not going not bring in anything to my doctor from Wiki. Other sites I have found are way too technical for me to read without using a medical dictionary. So if anyone could point me to a good site that explains Florinef well and why it is used for POTS I'd appreciated it.
  20. So the Florinef helps with the blood volume..and you found the Midodrine helps also? See when i was on Midodrine, that was it. I wasn't even taking salt tablets back tehn. So who knows, maybe it might have been more beneficial had I been taking it with the Florinef and the salt.
  21. That's what I feel like right now, a Prune.LOL I'm glad to hear it helped you with that. No I never had my aldosterone and renin levels checked. What is the significance of those tests? The thing is I'm being treated by a GP right now and so I've really got to bring the information to her. So in order to get any tests or try new meds I've got to get some information I can bring to her showing why this is needed for patients with POTS. To tell you the truth I haven't been paying attention to the POTS since I haven't had a "POTS" doctor so I've been concentrating on treating the symptoms mostly, like GI issues, and sinus . plus hormonal stuff. But now I feel I want to go back to looking at the POTS itself and making sure I'm doing all I can to treat that. So I kind of have to re educate myself. I didn't know it can lower potassium. I've also seen that people take Florinef and salt and say the two together are more helpful than just the salt. I think that Florinef is a weak vasoconstrictor is important since I'm only taking salt. Maybe adding the Florinef can help the blood volume better.
  22. Thanks for the reply. I have a little bit better idea of what Florinef can do for you. I'm not Diabetic but I have Hypoglycemia, so I already keep an eye on my Blood sugar levels. You mentioned puffiness. Have you gained weight at all due to Florinef? just curious. I guess a little added wight wouldn't be bad if you feel enough improvement in your health. I'm just scared because I already have such a hard time fighting to keep weight off. How long were you taking it before you noticed an improvement in symptoms?
  23. I have never tried Florinef. I got my BP up by just using the salt so I never bothered. But now I"m wondering I should try Florinef and other drugs like it. I tried Midodrine, and Mestinon, but neither had any effect. I tried a beta blocker but that didn't help either. Then I started taking salt tablets and my BP went up. That helped a lot. So I never thought of using Florinef. I guess I thought the salt did what the Florinef would have. But now I'm thinking , I don't really know a lot about the drug and what it does. Perhaps it could have some other benefits for me. So, I just want to know people's experiences with Florinef. If it helped you, and if it did, how has it helped you? P.S. I have a real problem with dryness. My hair, my skin, my sinuses, everything. and now my eyes are so dry they burn. I was wondering if Florinef helped with dryness at all..since I heard it was to help retain water.
  24. Wow..you took the words right out or my mouth. I am so sick of trying to figure out things for myself. It's especially hard when you get brain fog all of the time. I think what frustrates me most, is the lack of caring. I think that should be a big part of what a doctor should be. And also the lack of communication between doctors. It's really ridiculous when you are seeing all of these specialists and none of them communicate with each other. I once had a GP that asked for one of my specialists number..I felt hope...but she never called them. It'd be so much easier if you had a complicated issue and instead of being ignored, passed from doctor to doctor, not listened to etc. IF they would take the time to listen and work as a team. I guess having a degree ,as the others say , you might still get some of the same problems. But I really do wish I could take a class to educate myself more in all of this. I do think someone that has a degree might get a little more respect than people that say "I read this on the internet". I'm just getting tired of having to educate myself. My mind is too foggy and I just want to give up already. And I don't like that. But I'm just tired of it all. A while back, when I had a little money , I used to see a holistic doctor. She was very nice and it was almost a therapy session when I saw her. Not just because she was understanding but because if I brought something up medically , she'd listen! And then she'd discuss it with me. One time in particular I brought in some info and we talked about it and tried it..And it helped me. She did help me physically but I think what helped most is that she treated me so well as a person. I wish more doctors were like that. Unfortunately I can't afford to see her anymore because of the insurance. But It would help so much if some doctors would realize that when you have a chronic illness you start to really know your body. You know not only from instinct but from experience.
  25. thanks fro the reply. I'm glad to hear your rheumatologist told you to start with Sheer energy pantyhose because I was thinking of the same thing. My mom used to use support hose and I was thinking maybe I could try them. I did not know they were trained to measure for the compression stockings at the medical supply store. That's good. Thanks for the info.
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