bellaluna Posted February 29, 2008 Report Share Posted February 29, 2008 My current doc is not willing to extend my leave any longer, even though I have had virtually no improvement in months, and so it looks like I will be forced to return to work on Monday. I'm terrified that I will be pushing myself too hard and I will get much worse again. I don't know what to do, and frankly the anxiety alone is making me feel 10x worse. I just want to cry. Thanks for letting me vent. Mary Quote Link to comment Share on other sites More sharing options...
mrsdavidson8605 Posted February 29, 2008 Report Share Posted February 29, 2008 so sorry to hear that. Maybe you could cut back the hours, but if you're like me, money's tight.. luckily I was able to quit and my husband works, but I know your pain. When I started getting bad, it was such a struggle to go to work. I'll keep you in my prayers. Good luck. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted February 29, 2008 Report Share Posted February 29, 2008 I'm sorry to hear this. My son was denied SSDI for the second time today, so he has to decide what he's going to do. It's a horrible situation for you. Wish I could say something that would help, but all I can say is, I understand...morgan Quote Link to comment Share on other sites More sharing options...
pat57 Posted February 29, 2008 Report Share Posted February 29, 2008 When I first went back to work, I literally prayed in the parking lot- before I went in. I did ,try to expect nothing, "stay in the moment" that stopped the anxiety.Crying is a good thing- I think it indicates acceptance. For me when there is nothing I can do- I cry.good luck Quote Link to comment Share on other sites More sharing options...
Dawg Tired Posted February 29, 2008 Report Share Posted February 29, 2008 So sorry to hear this. I know well the anxiety. Quote Link to comment Share on other sites More sharing options...
bellaluna Posted February 29, 2008 Author Report Share Posted February 29, 2008 Thank you all for the kind words. It is really nice to have people who do understand what I'm going through. Since I have no choice, I'm going to give it a go, maybe things will be ok.Morgan- I'm sorry to hear about your son. Unfortunately, in these kinds of situations, the decision making power is almost taken from us, because we need income to survive. We can't decide to remain off work when we are too ill to work, because we cannot afford to live with no money. It's a kick in the pants for sure. I'll keep your family in my thoughts, maybe something good will happen from this.Mary Quote Link to comment Share on other sites More sharing options...
iheartcats Posted March 29, 2008 Report Share Posted March 29, 2008 Thank you all for the kind words. It is really nice to have people who do understand what I'm going through. Since I have no choice, I'm going to give it a go, maybe things will be ok.Morgan- I'm sorry to hear about your son. Unfortunately, in these kinds of situations, the decision making power is almost taken from us, because we need income to survive. We can't decide to remain off work when we are too ill to work, because we cannot afford to live with no money. It's a kick in the pants for sure. I'll keep your family in my thoughts, maybe something good will happen from this.MaryJust take it one day at a time - when I get through a day I'm very happy and it encourages me to keep trying. Believe me, some days will be much better than others, and some much worse.I wish you luck. Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted March 31, 2008 Report Share Posted March 31, 2008 Hi!How is being back to work going?Hope all is well! Quote Link to comment Share on other sites More sharing options...
bellaluna Posted April 2, 2008 Author Report Share Posted April 2, 2008 Thanks for asking about me- I've been kind of avoiding the board lately because I've been so discouraged, and basically work is taking the little bit that is left of my energy. I'm working 6 hour days now, and it has been VERY tough. I struggle through the day to day stuff (tired, weak, headache, shakiness, etc.), but this past Sunday I had a MAJOR crash. I woke up and I could not be upright at all without getting horribly dizzy and feeling like I was going to die. I'm gradually "recovering" from that, I still feel a little off, but at least I can get up and try to manage. Seeing a cardiologist tomorrow, not that it will do me any good. I am so disenchanted with the medical field right now. Nobody believes that I am really sick, and it is so hard to explain to them that I may look fairly normal, but my illness can be truly debilitating at times... people just don't understand. Even the people who were my support system previously seem to be falling away. I sometimes wonder if my husband even believes me... I would give anything to have my "normal" life back.Sorry if this post is kind of negative. I'm just in a bad place right now... Mary Quote Link to comment Share on other sites More sharing options...
iheartcats Posted April 12, 2008 Report Share Posted April 12, 2008 Thanks for asking about me- I've been kind of avoiding the board lately because I've been so discouraged, and basically work is taking the little bit that is left of my energy. I'm working 6 hour days now, and it has been VERY tough. I struggle through the day to day stuff (tired, weak, headache, shakiness, etc.), but this past Sunday I had a MAJOR crash. I woke up and I could not be upright at all without getting horribly dizzy and feeling like I was going to die. I'm gradually "recovering" from that, I still feel a little off, but at least I can get up and try to manage. Seeing a cardiologist tomorrow, not that it will do me any good. I am so disenchanted with the medical field right now. Nobody believes that I am really sick, and it is so hard to explain to them that I may look fairly normal, but my illness can be truly debilitating at times... people just don't understand. Even the people who were my support system previously seem to be falling away. I sometimes wonder if my husband even believes me... I would give anything to have my "normal" life back.Sorry if this post is kind of negative. I'm just in a bad place right now... MaryI think you hit the nail on the head about looking 'fairly normal.' Only people really close to me (and only some of them) understand just how bad this can be. I push myself - and it sounds like you're doing the same - because I really don't have a choice. I just keep thinking it can get better. It has got better for others. What type of work do you do? Is it physically demanding?Are you on any medications? I'm not yet so I can give no advice...but they want me to try some. That scares me, but I guess it'll be worth a try to get better.Please try to stay a bit positive...thinks can get better. Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted April 12, 2008 Report Share Posted April 12, 2008 Hi again!How did the cardiologist go? As far as your symptoms for a while after working you will likely have to build up your endurance again. I know for myself I can get distracted and think more about the work then my health, and not take care of the basics like making sure to take meds, drink a ton of fluids, and make sure to eat. Also, salt loading if you have been instructed to do so. Then also getting up and moving around plenty to get the blood pumping. Also, because your brain is often elsewhere, try to train yourself to move slower- don't get up out of chair to fast, or walk to fast down the hall. Even making sure to keep legs moving in your chair to keep the blood pumping. Have you tried compression stockings while working? Also watch the temp of the office- have plenty of layers, a fan and a heater (especially during these transition weather periods). Just some of the things I have noticed for myself- and sometimes if you get too hot stick your head in the freezer to cool down. Also, try and make sure and get a good nights sleep and discuss with your doctor taking a multi-vitamin or other supplements to make sure that you are getting all your nutrients to try and not feel so tired and weak etc. (It is a place to start if you haven't tried- for me it only helps minimally, but it is worth a try). Because I too have continued to have MAJOR issues with school and work.I hope things have gotten better! Quote Link to comment Share on other sites More sharing options...
bellaluna Posted April 12, 2008 Author Report Share Posted April 12, 2008 Thanks again for asking about me... I've been off work the last 2 days, and it was SO nice to just rest. I find that early on in the week, I feel ok, but after a few days of pushing it, I start feeling really bad. Thursdays and Fridays are the hardest (I'm lucky that my husband has Fridays off, as I basically come home from work and go right to bed). I'm coping day by day. What else can I do? My biggest fear is that after pushing myself like this for too long, I am going to end up at the point where I can't do anything again. I don't want that.The appointment with the cardiologist went surprisingly well. He believes that I have "some form of POTS". So, finally somebody that believes that I am actually sick! I was not expecting him to say that at all. We did an echocardiogram and that came out fine- nothing structurally wrong with my heart, and the EKG we did was good too.Right now, I'm on Atenolol which seems to help keep things in check. I also take a multivitamin every day, don't know whether it helps or not, but I figured it can't hurt, right?Anyway, that's about it. Just plodding along for now.Mary Quote Link to comment Share on other sites More sharing options...
Ernie Posted April 13, 2008 Report Share Posted April 13, 2008 Hi,Have you ever done a TTT to get your diagnosis? Quote Link to comment Share on other sites More sharing options...
Megan Posted April 13, 2008 Report Share Posted April 13, 2008 I'm glad you've gotten someone to actually believe you! I'm praying for you, hoping work doesn't wear you down too much.Meg Quote Link to comment Share on other sites More sharing options...
bellaluna Posted April 16, 2008 Author Report Share Posted April 16, 2008 Ernie- yes, I had a TTT done in November. I did not pass out, but blood pressure and heart rate went up, and I became very ill (especially after the isuprel was given)... doc was testing me for neurocardiogenic syncope, and since I didn't pass out, he classified the results as "normal" even though other medical professionals that I've shown the results to think they are anything but normal. Just trying to get through day to day for now...Mary Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted April 16, 2008 Report Share Posted April 16, 2008 Hi,I am glad you are still able to take it a day at a time and continue with work. What you said about the beginning of the week and greatly fatiging as the week progresses I can relate to. Did you have other autonomic testing like QSART testing done as well? Are you also seeing a neurologist? I have gotten the most of my help from neurologists. It is great though it sounds like you have a good cardiologist that acknowledges what is going on, which is very helpful. I just found cardiologists did not want to help me for the long term. I wish you luck and that hopefully the rest of the week will go well! Quote Link to comment Share on other sites More sharing options...
Ernie Posted April 17, 2008 Report Share Posted April 17, 2008 Hi Mary,I am sorry that you still have to work when feeling so crappy even with your diagnosis.Is there a way that you can lay down at work at lunch time and-or break time? I use to do it and it helped me greatly to go through the day and the week. Quote Link to comment Share on other sites More sharing options...
Megan Posted April 17, 2008 Report Share Posted April 17, 2008 Adding to Ernie's post, maybe you could get a camping cot of some sort to use?Meg Quote Link to comment Share on other sites More sharing options...
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