taylortotmom

I have been home for five and a half years with increasing symptoms over the past three years or so. I require daily iv treatments (via my port-a-cath) to have any degree of normalcy to my life. I am an extreme case and most people do get better and do not have to have the level of treatment I do and certainly not long term. So, hopefully, I'm a bad example! While sick, (I now realize this was a dumb choice due to the consequence it had on my health) I went to grad school and received my Master's degree in Counseling. Of course, at this point I am unable to do substantial professional work. However, as a full-time and active "sick" mom I use my degree every day in some capacity. For example, today I helped out with assessments in my son's kindergarten class. I am able to do a limited amount of volunteer work a week (about 10 hours or less- usually, much less) which helps me in many ways. I have taken up the guitar and am teaching myself to play now that both kids are in school. So, is my life what I thought it would be ten years ago? No way. But, you know- it's okay. I'm beginning to see where all this is going and it might not be such a bad place afterall. Thanks for the question- I needed the lift! Carmen

Yay!!!! Congratulations- getting there is half the work! Carmen

Yep, the elderly oftentimes have a hard time seeing our disability don't they? I've found that I simply state that I have a heart problem and people (of all ages) will go out of their way to help. People usually don't mean to be insensitive, even our wonderful Wal-Mart greeters! Carmen

I have noticed that if I exhale when I am attempting to walk up stairs it really helps. Don't know why but it seems to slow down my heartrate as it is increasing upon exertion (the up the stairs thing). It has kept me from passing out so yeah, deep breathing can be beneficial. Carmen

Hope you feel better soon- dysautonomia makes everything worse doesn't it? I've had a virus that has knocked me down for going on four weeks so I feel your misery! Take care. Carmen

I think one problem in our medical community is we are overspecialized! Neurologists treat migraines, look for MS and Stroke and that's about it. Cardiologist look for coronary artery disease and major heart structural problems. Urologist look for kidney stones and cancer. Our doctors get so focused on their one area that they don't step back and look at the whole picture. So, if you don't have MS a neurologist may dismiss you despite the fact you've haved transient parylisis for the past month! He'll say your fine and send you on your way!! I'm not trying to start a doctor bash but my expereience has been many specialist look for specific diagnoses and if you don'e have it you are "fine" despite extreme symptoms and disability. It is so frustrating. So, I'm sorry about your experience. But... there are some awesome specialists who do infact look at the whole system instead of just "their area" to try to determine if someone else might can help you better. I'm sorry, I've been in both situations. It is so frustrating to take the time to get in with a specialist only to be disregarded. Hang in there and if your symptoms don't abate find someone new! Carmen

Call me crazy (it wouldn't be the first time!) but I link my "fall" to the hurricanes. The stress of seeing what has happened to so many people on top of the seasonal allergy stuff knocked me down flat. I'm just now able to sit up and do a few things. My body has gone nuts. My BP got down in the 80/40 range yesterday even after two liters of fluid so I have felt awful. Just a thought- environmental and social stresors could be contributing factors. Similiar stuff happened after 9/11- a lot of people expereinced sxs similiar to PTSD even if they weren't directly affected. So, it's possible the state of the world is affecting the state of our bodies. Take care! Carmen

Lois, First, I don't find anyone's posts "irritating". This is a place to vent as often as needed. My heart goes out to you for dealing with two major diagnoses at once. There was a period of time when my doctors thought I had colon cancer in my twenties and I remember how terrifying just the idea of cancer can be. You have the diagnosis and now receiving treatment for the very thing so many women fear- breast cancer. There is no upside to this- it's bad. But.... cancer is not the same as it used to be. Yet, for you that doesn't really matter because that doesn't change the effect it is having on your life right now. Unfortunately, you are not alone. Have you considered linking up with a local support group for breast cancer patients? Of course, DINET is here for you as a means of suppot, too. I'm sending love and good thoughts your way. Don't apologize for legitimate feelings. You have the right to be ticked off and scared. Life can be cruel but you don't have to go through this alone. Much love, Carmen

I have been an active member of this forum for several months and want to emphasize that this forum is a very welcoming, supportive forum. Two of our moderators have been quite ill lately so they have not been able to do as much as they usually do (both are awesome for the amount of time they are able to give to this forum). I , personally have had three TERRIBLE weeks physically as is the case for many of us. If you don't get answered please, please don't take it personally. Dysautonomia can knock you down at any time with little warning so understand that the members here have varying levels of functioning at any given time. Anyway, thank you for letting us know how you feel and I know I personally will try to do a better job of responding to posts as I can. Take care. Carmen

I had the same scary symptom for two years and FINALLY was diagnosed with enodmetriosis on my colon. I had a total hysterectomy last summer and my life has been much better in that department. Good luck! Carmen

Dan and Linda: You have been such a tremendous blessing to the dysautonomia community. I pray that Dan's surgery goes well and will be keeping you in my thoughts. Thank you for what you have done for the chronically ill. May the love you have shown be returned to you two-fold. God bless and keep you! Sincerely, Carmen Taylor

Although I am 31, I had a total hysterectomy last summer and regret to inform that despite "going through the change" the dysautonomia is still going strong. Sorry to be the bearer of bad news. Although, other people might have had other expereinces. Carmen

Sometimes college profs like to "push buttons" to get us to react in different ways and to see things in a different perspective. There was one particular philosophy prof who began each semester by blantantly telling his students that God does not exist. Only after getting into the course did the students realize he did that for shock value and to make us think "outside the box". He actually is Protestant and even lived in an Amish community for the "expereince. So my point is, yes, your prof was out of line but a college prof lives in a highly "intellectual" world (ESPECIALLY Graduate profs) and has the job of making students think and react in different ways they may not be comfortable with. Carmen

Won after appealing initial denial determination. Carmen

I haven't posted this week because I have been very depressed. Your post just lights up my day. I am so glad you have FINALLY found a great doctor. That is wonderful news! Carmen

My understanding is the the diagnosis of MVP is pretty cut and dry. You ether have the "billowing" leafet on your heart or you don't. The sxs attributed to what many doctors consider to be MVPS (mitral valve prolapse syndrome) are subjective but MVP (mitral valve prolapse) itself is pretty objective. Carmen

I think as a whole I manage strss well... but.... right now I am STRESSED. I mean major stress and I know it is situational to all going on in the world right now. I have major negativity and despair feelings. How can I turn on the tv and not react to what I'm seeing? Carmen

Minor problems here and there but full blown after birth of second child. Carmen

Don't apologize for legitimate feelings. Carmen

I don't know the statistics for POTS but TYPICALLY it is diagnosed more in women. Yet, POTS is not the only thing that could cause the symptoms you are describing. For instance, I don't have POTS but MVP with dysautonomia, NCS, tachy-brady. MVP is definitely seen in men and women even though it might be diagnosed more in women due to the fact women go to the doctor more often. Young women specifically are much more likely to go to the doctor for routine gynecological exams. Often MVP is detected in these "routine" exams. Young men really don't have a reason to see a doctor on a yearly basis and usually only go to the doctor when there is a problem. So, I personally believe that is part of the reason women get these type of diagnoses more often. Regarding MVP with dysautonomia, my MALE cardiologist has both so it definitely is seen in both sexes. You could request a tilt table test. It not only shows variations in pulse but blood pressure when standing which is my big issue (MAJOR drop) and hydration can and does play a role in this as you stated. Those of us with various dysautonomias often have major hydration deficits as you can tell by reading through previous topics. Another thing is MVP is oftentimes associated with extreme anxiety and panic attacks. Have you ever been told that you have MVP and/or a murmur? It is a usually (but not always) benign condition that is correlated with a myriad of problems. Hope some of this makes sense! Carmen

What a hoot!! Thank you for putting a smile on my face this morning and many good lucks for continued fun and success in school. Oh, and I could have a doctoraste in cartoon viewing thanks to my kids! Carmen

What is it you are wanting to accomplish at Oxford? What is your end goal and what will it take to make it happen? What specifically can help you make this happen? There are some things that unfortunately can't be changed: you are sick, you get substandard medical care, you have to rely on government healthcare which you state is horrible in the UK, you may not get the wheelchair you want, and your roomates may or may not be tolerate of your condition. Okay, those are things you can't do alot about. But what is in your control? Well... first, your opinion of yourself and your abilities. It sounds like you have a supportive family and that is definitely an asset. What else? Concentrating on what is negative will pull you down and keep you there. Not to say you don't have to deal with the bad, but what about the good? You have an opportunity to go to Oxford- and the financial aid came through- that in itself is awesome! Perspehone you need to vent big time right now- you've got a lot going on. Of course, the forum is one outlet but have you consider talking to someone professionally or do you have someone you could confide in as often as you need? Stress can eat you up from the inside out- don't let this happen to you. You have the potential to do great things with your life- but, it is going to have to be up to you. If you are truly feeling worthless- find someone, somewhere to tell and get help- there are many things that can be done to get you over this hump. Let me know what you decide- and good luck. Carmen

It is so sad and I know everyone feels helpless. I, too grew up in a hurricane prone area and now live in the Florida panhandle. We all thought New Orleans would be destroyed with this brutal storm but it seems Gulfport got the brunt. I will definitely pray for your loved ones. God bless and keep you! Carmen

You have gone through a lot to get to University- now is not the time to give up. If you want it- it can and will happen. I know you want it, go back and read your posts. Your heart is set on school- don't let this illness keep you out if your truly are determined. Good luck! Carmen

It sounds like you have had a bad, bad day. Are you sure about the reading? That seems like a drastic change from what you said was your typical 90/60. If you are sure about the reading- I would definitely go to the hospital even if you think they will not do anything. That's an extreme reading and needs to be checked out. There might not be anything that can be done but it at least needs to be documented and watched by someone, somewhere. I know it is so hard when you feel like no one on earth gives a rip. But.... doctors have to priortize according to how life threatening something is and unfortunately since many of the symptoms of dysautonomia are not considered life threatening we are often put to the side. Having said this, your blood pressure change is in a different category and needs to be checked out- pronto. Keep us updated and good luck. Carmen PS How often have you taken your reading today? Has it stayed up or has it fluctuated?