Jump to content


  • Content Count

  • Joined

  • Last visited

Everything posted by Kitsakatsa

  1. LOL Whatever. To correct both heartrate and blood pressure and to say that you are cured is like to not open your mailbox and think that you have no more bills to pay. This is such a deficiency to a dynamic process. My doc says that you can never ever heal or simulate a dynamic process and the best anyone can do is figure out how to bolster up a POTS patient, but its purely artificial and doesn't come close to being the actual pure ability. The first step to becoming more functional is to get that heart rate and blood pressure to its optimum level, the next step is to build tolerance for ac
  2. There have been two things I've taken that helps: Adderall and Provigil. I couldn't live without Adderall. Still though, I am exhausted most mornings- I don't know how you can deal with toddler energy!!! Sympathy!!! Kits
  3. Church says Amen!!!! There is SOMETHING CRAZY about POTS. I have lost 13 pounds in one week, then gained it the next. I have lost or gained as much as 4.5 pounds in one day. The one thing that I find irritating is that by all nutrition sites and scientific calorie calculations, they tell me to eat 2000 kcal per day. I gain weight like a tornado if I go above 1300 and that is with daily exercise, 8 hours of work each day AND I had a metabolism measurement by a nutritionist that said I burn 1700 kcals per day if lying in bed. Believe me, I have tried 2000 kcals a day of healthy food and I w
  4. Kits I have a hard time napping unless I'm sick, but if I'm going to learn from anyone, it'd be my cat! How adorable. I'm glad you had a wonderful nap and the picture of cats and sunshine and napping made me happy. Aw, their names are Eleanor Rigby and Mr. World Bank. I'm so tense and they all they have to do is start purring and suddenly everything is just going to be okay. Aren't cats the best?!!! Kits
  5. Did the folic acid make you nauseated? Kits
  6. I am now a HUGE FAN of sleeping during the day. My alarm goes off at 6am and my lights are usually off around midnight. I am always exhausted but POTS for me means an overabundance of adrenaline and therefore insomnia. Well, today I felt really horrible (which I was kind of glad for, because I have a heart monitor on for the next week), and I came home from work. I was really nervous about missing a meeting, but my two cats showed me how they take naps and the house was full of sunshine and I had the most wonderful nap. I felt like I was making up for centuries of sleep. I have to say th
  7. In reply, I would check for travel. That is a bit of a different ball game. You can usually call in sick at the drop of a hat, but to call in sick for travel that your company has booked and paid for will raise the boss irritation sirens fast. It is an important question that I would ask in the interview. With airline security measures being what they are you will likely have to stand in line, run to gates with luggage and your coworkers would not be able to use your ticket. I would be very cautious about travel if it is involved. About the firing question- that is a hard question to answe
  8. Also, forgot to say. I would file for intermittant FMLA as soon as you are able. Managers around here actually seen IFMLA as a relief because your employee can call in sick and it does not drag down your attendance standards. What is hard on an employer is having them not on IFMLA and having to enforce a sick call policy on them, knowing that they are sick. I can't speak for all, but us sickies tend to think of IFMLA as putting our Managers in a trap. I myself am on IFMLA and I had an employee with Orthostatic Hypotension on IFMLA- it's actually a relief for a Manager because they often ti
  9. As a hiring Manager, I have the following advice: (I am assuming you are located in the US) The only question they are allowed to ask is if you can perform the duties of this job with or without accomodation. If you answer yes, it means that you are still entitled to accomodation and eligible for the position. Positions that include labor must list the physical requirements in the job listing. Pay special attention to those. I would apply, answer that question with a yes or no, interview as you normally would and accept the position if you are interested in it. I would not create extra ste
  10. Thank you, I am hoping that they can see what I feel. Isn't that our constant struggle? Yes, I have to admit its quite a sport of mine to internally giggle as I watch medical assistants struggle to find the BP. Physical therapists look at me like I'm coding. I once read from Dr. Google that there such as thing as "pulseless disease" and it is a type of vasculitis. I wonder if there are some common properties. Thank you for your reply, Kits
  11. I thought I would throw this question out there. Has anyone had the type of heart monitor where they monitor you for two weeks? I just have a VERY thready fast pulse- no one including machines can detect a pulse or blood pressure when I'm standing up. Few can do it when I'm sitting down. I think this is common among us POTS patients and I wonder if these can detect us- or if it will just show every other beat etc. It's an expensive test and I don't want to ruin it. I also don't want a falsley low reading that will show as normal because a tech and the machine don't know what they are doing.
  12. One of the most miserable aspects of POTS happens to me WHEN lying down- I call it static, but I think it is really adrenalin sickness. In fact, sometimes I cannot lay down. I can feel my body struggling with the change in position for 10-15 minutes and the struggle lessens if I can get back to a recliner. POTS is a dynamic impairment. A doctor that thinks that it all goes away when lying down doesn't realize the recumbent effects of the disease. That makes the complicated even more complex. Kits
  13. OMG!!! No! Mold causes major neurological effects. We kind of think that mine came either from a former meth lab or moldy apartment and we've been keeping an eye on news reports and stuff. We personally know two different families who had neuro problems from mold in their house. I would do a research search, do a google search, and then find out if your homeowners covers you and your illness and what it will take to help prove that it may have been from mold. There may be some action groups that you can utilize to help you. My heart sank when I read your post. What a trial you are going t
  14. Snort! MD: Most Dangerous with the lowest GPA. I love you guys. I feel particularly bad right now and its just making that appt all the worse. I tell myself that I cannot mourn the appt. I need to quit the pity party and move on. But this weekend I'm particularly sick. I went to Target a few hours ago and thought I would have to go curl up under a rack of clothes. I feel like I am just really overwhelmed with everything and I feel really panicy about the future. I'm still pretty spun around. I need to snap out of it. I should be a stronger person. Right now, I don't know how to get ba
  15. My wonderful Angel doctor sent me to a Cardiologist because I am pretty functional, but every morning and sometimes days on end I feel like just walking across the floor is an extreme sport (break out the protective eye wear!!) and my heart rate is extremely fast and thready. I feel like there is a huge incline, it is nearly impossible to do anything and my heart rate is reflecting that my body is working extremely hard. At these times I am out of breath and fatigue out within minutes. This is concerning because most days I can work 8 hours, then come home and exercise on the Wii. On the ba
  16. I have a port. The hypertonic solution has burned out my veins (last IV=32 sticks, what was successful blew out). The port has been an absolute lifesaver. The surgery under MAC anesthesia was easy to get through with not effects towards POTS. The recovery was Rough Ruff Rough! I felt like they had implanted a swordfish in my chest. I even accused them of it, laughs all around. But that is what it felt like. If I was a drinking woman, I would have been plastered! Part of this may be because I had an attention starved employee who decided to act up and get all bizaro and I had to return to wo
  17. It is an incredible amount of hard work! I often think that if more people had POTS that the world would just simply come to a standstill because everybody would have to go lay down! It really seems impossible sometimes. I have bad days and I know what you mean. The progress is so very slow. Sometimes the smallest thing can be so exhausting and it would be funny, except that after a while of these things it can really drag you down. Its all one step at a time, no matter how small. I once belonged to a gym next to my apartment complex. For nearly a year I would walk there, not go in, and
  18. Hopefully the Florinef will make a big difference, but it takes time (at least a week) and its all individual. It takes quite a bit to keep me upright (0.4/day). I blindly followed my physician with that dosing and it has paid off in grand ways. If anything, give it an honest try. It has made all the difference for me. Before the Florinef, I could not sit upright in bed for more than 60 seconds. To even get diagnosed, I had to have special help to even ambulate and you can imagine how grueling the testing was. I couldn't tolerate sound, light, or food and I was in severe malnutrition lyi
  19. I live at high altitude also (mountains of Utah) and I know that I have hydration issues because the the higher the altitude, the worse I feel, the worse I feel, the more nauseated I am and the less ability I have to consume liquids without feeling they are too heavy on the stomach. I recommend softer fluids: sports drinks, tea, herbals teas. As always, salt consumption is very important even if it is not sunny outside. Thermotabs are excellent. Kits
  20. Mine is absolutely necessary. I do get looks though. Its part of the mix. I use it on bad days. It is really how I can get into work some days. Otherwise, I'd be home. It is esp useful for events because you can park close enough to go back out to the car and rest. Kits
  21. Sugar, we're goin' down swingin'!!! This is a GREAT question. I ask myself it every day. I should feel settled by being able to work FT (even though its miserable), but I'm not settled. I've had new damage in the last year with tonic eye and decreased hearing in my left ear. If I don't keep pursuing a better way of life and a more complete diagnosis, I'm afraid of that this will just progress. Every time you don't feel good enough to pursue a better life is exactly the moment you have to pursue it and for that reason. Kits
  22. I love crochet. It's my favorite down time thing. It works best with a recliner some chocolate a purring cat red box movies fluffy socks backup chocolate diet coke snow outside warm inside Kits
  23. I know. I've been there. You are NOT a hypo. Its hard. My heart feels for you. Kits
  24. I wish I would have exercised more before POTS so I wouldn't be so concerned with it now. Its hard to handle! I am fluffier than I want to be, but I think I found what will work. I got a Wii for christmas and it is WONDERFUL! I can sit down and rest when I want and if that is 2 minutes in then whatever! There are lots of balancing exercises which are definately working so far. The only part is that there are alot of Yoga exercises that are not exactly POTS friendly. Too much standing! LOL! But it strengthens legs and core and those are great areas to build strength in order to get our blo
  • Create New...