taylortotmom

I went to court in April- the judgement was "formalized" in May, attorney's paid and then back payment came to me around the third week in June. So in total, about a month after receiving "formal" judgement. Carmen

I can only answer based on my experience. As you know I have a pacer and until October I had a port through which I received daily iv saline. I LOVED my port- however, after getting SEPSIS my feelings changed quickly. I did not think I could make it without my port- but I have even though it has taken quite a bit of adjustment. I now have to drink a gallon of gatorade on my good days and there are bad days when I long for my port (especially when I am migraining and keeping nothing down). The port conversation will come up again when I see my cardio this Friday. He was very skeptical of me not having the port which I know is contrary to what many other people with pacers have been told by their doctors. Again, it is such an individual thing- the risk of infection verses a better quality of life. For me, right now, I am okay without my port but I do miss it at times. Good luck, Amy I hope you are comfortable with whatever decision you make. Carmen

Thanks for the post. I have an Medtronic- Enrhythm- so safe this time around!

Hi, I live in FL. May will be hot but is still a better option than coming in August. Of course, right now it is April and we are in sweaters again, so who knows. But if I had to bet- I would say early May would be better than late May but any May is better than waiting. The later you get in the summer- the worse the heat/humidity/crowds will be. Of course, hotel pools and afternoon breaks are vital to coping with Disney during summer. Have fun! Carmen

What great news to see you here on the board, Ernie! I hate that things have been so incredibly hard for you but it sounds like you had a wonderful nurse. Thank goodness! Take care of yourself- Lots of hugs and love, Carmen

Congratulations! Your story sounds almost identical to mine, two year long process, won at the appeals hearing with an attorney primarily on the heart symptoms. Good for you- I know it is a tremendous relief! Carmen

If it is new- yes, get it checked out to be safe. In my case, I have had the most peculiar vision things (ziggy lines, everything looking like it was underwater, seeing only half of my field of vision, etc.) but it is USUALLY related to migraines in me. However, I have also had some TIA's so see your doctor (s) to make sure but it sounds like migraine in nature. Carmen

I am so sorry to hear this tonight. Melissa, I am sending you every ounce of hope in my body- hang in there, girl. I am so incredibly sorry you are having to go through this- again. With much love, Carmen

Well, based on what you have written I think it would be a good idea to bring a cardiologist on board- especially one familiar with dysautonomia and willing to work with your other doctors. I have had a few heart caths in the past and no they are not just to check for blockages. You will need to discuss with your doctor(s) about all the possible things they are looking for. One of the challenges of dysautonomia is we often have rather extreme heart symptoms but our hearts appear healthy. But, sometimes there are some off-the wall things causing those symptoms. So, a heart cath might help your doctors figure some things out or at least eliminate some other possible diagnoses. Good luck! Carmen

For me personally, the brady has caused far worse sxs and is the reason I now have a pacer. Don't get me wrong, tachycardia isn't fun either and I feel it is a huge contributer to those debilitating migraines I get. But, the brady just drains me. Everything- slows- down to a nonfunctional level. Carmen

Congratulations, Persephone. You are a tremendous inspiration- I am so proud of/for you!

Well, skipping dinner (or any meal) is usually a bad idea for us with dysautonomia. Do you get a break for dinner? I would encourage you to try Ensure- the chocolate ones are okay IMO. If you could squeeze in something as simple as a baked potato (load with cheese, salt, bacon bits if you need the sodium) it would be even better. I also hope you are keeping up with your fluids. It's great that you are able to work again but don't make yourself sick in the process- eat! I stay at home and I still have to really work at eating- I have little appetite so I have to get my nutrition in concentrated amounts. But, if I don't I take two steps back. So, take care of yourself! Carmen

Welcome home, Melissa.

Hi, Poohbear. I had a everything removed during my hysterectomy in 2004. Yes, my dysautonomia is worse- but it may have been worse regardless. What it did help is I no longer have to worry about three week long periods every month and debilitating symptoms cause by horrific periods. I no longer have to worry about cancer of my gynceological organs (which came up frequently because I had endoemtriosis on my colon and bladder which caused scary symptoms). In my case, the hysterectomy elimnated a lot of huge physical issues. Yes, I have SEVERE, progressive dysautonomia but I do not have periods to deal with any more and that has been a HUGE help. Good luck! Carmen

I actually have FINALLY had mine completely, totally, and PERMANENTLY discharged. It took forever and a day. I am supposed to be refunded any money I paid into the loan- but, I'm not holding my breath! My recommendation is to make COPIES OF EVERYTHING! CALL! BE A PAIN! Seriously, you have to- this process was even more frustrating than the SSDI process- absolutely ridiculous. Understand that if you work AT ALL during the process- the whole thing will become null and void and the loan will be reinstated. You can have the loan defrred for a year at a time during the process so your credit won't be negatively affected for not making payments. Good luck to everyone trying to do this- it CAN be done but you have to really be persistent. (UNDERSTATEMENT!) Carmen

We simply have relations during the day- now that our kids are in school- it is WONDERFUL. Come 11:00pm he knows to not even try We had to have a serious talk about my need for sleep and rest at night. He works a schedule where he is often home a day or two during the week and that really helps both of us from being resentful about the night issue. Where there is a will-there is a way. Seriously. You just might have to get a little creative. Carmen

I was on bisoprolol (sp?) for several months. I want to think it is the generic for Zebeta. I liked it but now only take beta blockers on an as needed basis because the side effects were too rough. I was on propanolol first, then Toprol XL, then Zebeta 5 mg. Carmen

Welcome home. THe sepsis road is not a fun one- you will definitely be in my thoughts. Take things very SLOWLY. Carmen

I hate to hear this today. Poor, Amy! I had sepsis in October- it is no fun. I sincerely hope she gets appropriate treatment soon- hang in there, Amy! Carmen

Wonderful news, congratulations! Carmen

I drink a minumum of 64 oz of Gatorade a day. I also drink other fluids (mandatory 2 cups coffee, milk, etc.)When I received iv fluids- I took 2-4 liters a day. Carmen

I typically get presyncopal when my numbers start running 80/50's. During my tilt my pressure bottomed out. My beta blocker helps with palps (but lowers BP) and the florinef and mega fluids increase the pressure. I only take the beta blocker on an as needed basis right now because I feel so bad when I take it regularly for the very reason you described. Carmen

Congratulations!!!!!!!!!!

Well, of course this is a very personal decision that only your husband and you can make. In my situation (I'm a Floridian, too) I am unable to work and would be unable to work regardless where we lived- so, we go wherever my husband can make the most money. We are tied to my husband's job because we are a one and a half income family (I get SSDI hence, the "half"). For me, moving would do little if any to help with my over all health. I'm inside whether its 50 degrees out or 90 degrees out on most days. Good luck to you and congratulations on the promotion for your husband. Carmen

This sounds awesome! Carmen