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Elfie

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Everything posted by Elfie

  1. Thank you all for your replies. I guess I am feeling kind of swamped. I am taking 16 credit hours this semester, which is down from the 18 I normally take. I have a scholarship, and that scholarship requires I take 16 credit hours (which is 4 more than the college's requirement to be a full-time student). I tried to talk to the scholarship office about this, but they said there were other students that they would give the scholarship to if I was unable to take the required course load. I cannot pay for school without my scholarship and would have to transfer to another school, which would probably add another year of classes to my degree program. I have three semesters of classes left. Unfortunately, at my college the upper-division coursework is taught in combination with the graduate school program, so the classes are small. No large lectures for me, those are only for the freshman. I guess I am frustrated with my teachers for not being more flexible with there attendance policy with my special circumstances because most of the classes I am taking are being taught like lecture classes with only very small disscussion or in class activities portions. I also know that in most those circumstances I could get notes over what the discussions were like from a classmate or have them run a tape recorder for me if I absolutely had to miss. I mean, I wouldn't be adding to the discussion, but I wouldn't miss anything either. I also could easily make up most of the small in-class writing assignments that I might miss. My classmates are willing to help me out in this way. All but one of my teachers put their lectures on powerpoints and could at least take the three minutes to e-mail me the powerpoint so I could actually listen to the lecture instead of trying to play note-taking catchup with brainfog, or if I have to miss class. However, none of these things are "reasonable accomodation" which means I am really struggling to keep my head above water.
  2. I really appreciate all of the responses. From the gist of it, it sounds like you are all in agreement that I need to disclose to my instructors about my condition and try to get them to work with me. I think it is a good idea to give them a heads up rather than having them blindsided later in the semester. You all have given me the nudge to do this, which is something I have been putting off. I wasn't sure that I would qualify for disability services but thought I should go talk to my college's center because of the new addendum to the ADA in January of 2008 broadening the scope of who qualifies for those services. No one from the office would talk to me over the phone, but they set me up an appointment and told me to bring in paperwork verifying and explaining my diagnosis. I finally went in for my appointment last week and the director of the program was verified that I was eligible for services. However, he was very upset when he found out that I had not come in with a list of accommodations I would like fulfilled. I had one thing in mind and he said that that would not be considered a reasonable accommodation. So I asked him what type of things would be considered reasonable accommodations. He told me that I could get permission to tape record lectures (which doesn't work well in most of our classrooms) and that I could get extended time for testing (from 50 min to slightly longer). The director told me it was my right to chose to disclose or not to disclose to my teachers. However, if I disclose, I am on my own if the discriminate against me. In my opinion, I should tell my instructors about my condition. I already have the paperwork from the disability office to back me up. I doubt any of my teachers are prejudiced against people with POTs! However, I really do not know what type of services to request from the disability office and how to go about talking to my teachers. Does anyone have any advice? I think I may try the masks when the viruses really start going around. There are a couple of studies out that say they are effective.
  3. Someone else's post, combined with the situation already going on at my school, inspired me to write this. I am a full-time college student. I am not currently working. I had been seeking employment, but now with the school year starting I am just barely keeping my head above water with POTs, life, and classes. Right now I am keeping my head above water financially (barely) because of some savings and the support of some of my family members. School has been is session for about two weeks now and there is already what seems to me to be unusual numbers of colds and even suspected H1N1 zipping around through the school. I haven't caught anything viral yet but already have had a sinus infection because my body is run down. The day I went into the doctor I could not get my heart rate lower than 160 b.p.m. I barely had a blood pressure to take. Our teachers are allowed to set their own attendance policy. Most of my teachers have. I can miss as few as three classes and many teachers make no exceptions/no way to make them up. I understand the importance of attending classes, but I really think that is going overboard. All that is doing is screwing over people like me (that sometimes cannot safely come to class) and encouraging other people to come to class sick. I am sure many of you deal with this same dilemma in your jobs. So, I guess my question is, what do you do? How do you deal with POTs issues and attendance? Do you go to work or school when you are contagious just because you need to save sick days? How do you deal with other classmates that come to school sick? Have you ever asked a classmate not to sit by you are asked them to please not to come to class because of your own immune issues? Do you wear a mask in public? How do you deal with these issues? Ditto for work. I would really appreciate the advice, because I get sick so easily since POTs and become practically unable to function.
  4. I have heard several of you mention that you drink bouillon to help up your salt intake. I assume this would be much saltier than pre-prepared beef or chicken broth (especially the healthy kind without tons of preservatives, as it tends to be low sodium). However, I have yet to find any bouillon that does not include MSG. This confuses me. Do you guys know where to get the bouillon without MSG? Or are all of you drinking it with MSG? I am allergic to MSG and I know that that is one of the most common and potent food allergies around. I also have noticed many of you suffer from food allergies or multiple chemical sensitivities. All I can find is broth or meat paste (yuck) without MSG. So what gives?
  5. LOL! It just about did me in too! When I went to the doctor today they took my heart rate and it was 160 b.p.m. sitting. That is the lowest it has been in weeks.
  6. I just wanted to thank everyone here on the forum for caring enough to give me such good advice. I really struggled with making this decision, but looking back on this, the choice should have been really clear. I was really worried about hurting a relationship that was no good for me and hurting someone that often wasn't concerned about hurting me. I spent a week trying to work things out and rectify the situation while he spent a week manipulating me and keeping me from getting the sleep I needed. We are no longer together but have decided to stay "friends." He, however, defines friends as in "friends-with-benefits" while I definitely do not. Therefore, I definitely need to find a new place to live. I had something lined up, but the broker has apparently decided to stop communicating with me on the property (it was all set, I just had to go in to sign the contract, so I don't know if she gave the place away or what). I am having problems finding a new place to live. The college students have moved in and bought up the apartments! Now I have a sinus infection caused by my allergies to the couch and the carpet in the place. Oh well, too little too late. I really appreciate all of the support. Thank you all!
  7. I was put on an elimination diet that eliminated gluten, dairy, nightshades, certain other vegetables, certain nuts, many fruits, and all animal protein but free-range chicken and wild game by a neurologist. Everything I ate had to be organic as well. I also gave up caffeine and already did not drink alcohol. I was supposed to maintain my former calorie intake. Prior to being put on the diet I was already eating fairly cleanly (wild game and chicken only, lots of vegetables and fruits, only the occasional processed sugar, some processed flour, not alot of preservatives, and my vice was drinking about three or four cans of coke a week). The doctor had warned me that it might be hard to go off of the sugar and the caffeine, but that should rectify itself within a week or two. I was on the diet for three months and had no improvement in my symptoms. It was actually a very bad experience for me. Despite eating a very balanced mix of protein and carbs and getting lots of fruits and veggies and fats from nuts and olive oil on the diet as well as maintaining the number of calories I was taking in and actually decreasing the amount of activity I was doing I lost 14 pounds in two weeks. I lost many more in the next few months, even when I was eating twice as many calories as I was before going on the diet. I had zero energy and always felt as though I was going to faint. I was not hungry and had to force myself to eat and yet seemed to not be getting anything out of the food. All of this rectified when I went back to eating gluten and my fairly healthy but not restrictive diet.
  8. I don't know about the klonopin, but the hair loss is the pits! I think that it definitely has something to do with how POTs patients' bodies deal with stress. When I am run down or under stress I will start losing large amounts of hair. Then it takes it forever to grow back. Just when my head is starting to look less BALDING!!!! the cycle starts again. It always, always has to do with stress-induced symptomatic periods of my life though.
  9. WOW! I was still working on my post when the last two appeared. I appreciate the concern but believe me, this is not something to hurt each others feelings over. I wouldn't want to cause anyone to have bad feeling over my issue. Both of you have excellent points. I would be thrilled with the apartment had I not been sick (the rent is a little cheaper than most places this size because of the weird parts). I would be more willing to deal with the hygiene issues or complain and fight about it. I wouldn't have stress or feel guilty. I would be able to go out on my own and I would not have any problems with him being controlling. I also would have no financial issues, could live cheaper, and would be working. One of the reasons we originally moved in together was to save money. However, that hasn't worked out well for me. I have routinely had to pay both parts of a split bill to keep a service I need from being shut off. Before meeting my boyfriend I had savings and was working. I can no longer work due to POTs and joint pain and he has drained my savings. My mom and dad and three of my grandparents are putting away money here and there to send me to school and pay for my living expenses. This is a new situation, before a couple of months ago I was mostly paying my own way. I refuse to give him any more money, and I could probably afford to live alone, but I am trying to save money anywhere I can. I have also had other horrible roommates in the past. So, in the end I am struggling to make a decision. Sometimes I live with a person that treats me well, sometimes badly. Moving out would simplify my life in some ways and make it more complicated in others.
  10. Thank you all for taking an interest in my post and providing some advice. I just started my new semester at school, so along with travel, and that stress, I have been going crazy over yucky stuff. To top it all off it is 103 degrees here, so i'm not feeling well. Shower or no shower I have been blacking and passing out. I am going to break this post up by info brought up by each responder, but please feel free to read them all. Potsgirl- You are correct, I did not sign the lease and am in no way legally responsible to live there. However, if I do not move in, it will be a very large financial strain on my boyfriend to pay the rent by himself. That alone could end up ending our relationship. This could cause some strain on my relationship with our shared friends because he and I did have an agreement to live together and share the rent this year. He moved us out of our old apartment without telling me. The contract was up in September, but the landlord let him out of it early and already has another renter in there. I thought we were going to extend our contract with our previous landlord or go looking for a slightly larger place in September. He actually loves counselors. He has tried to get me to see one before, because he felt like I had abused him. He said this because before I was diagnosed I had gotten the flu and had a horrible high heart rate racing heart and chest pain and thought I was having a heart attack and literally thought I was dying and he had to take me to the emergency room. I would love to go home, but if I can stick it out with him or somewhere else down here I will try so I don't lose my scholarship and my tuition money from this semester. Tachy - I would feel guilty if I moved out. Most of the problem is the place he chose. Part of it is that this could have been prevented by ASKING me. Another part is that his behavior is affecting my health. It is hard for me to take the trash out here, as I have to go up the stairs with carrying a full bag or can, then climb a steep hill with it, lift a dumpster lid, and then lift the trash. I am about to go break down and do that in the 103 degree heat because the trash has been full for 3 days ---- and now he is propping the lid open and having the food trash overflow onto the floor. But he can't throw it in the back of his truck and drop it off on his way to work. Talk about cockroach city! Two days ago I was starting the dishes and he offered to do them. I accepted and went and laid down because I wasn't feeling well. Well, there is still a sinkful of dishes. Now they are all smelly. To top it off, there are three bowls that are mine in the whole sink. Most of the dishes are his Tupperware containers from work, with half the rotten food still in them. I'm sorry, I don't mind doing the dishes but nobody, especially no one who is immunodeficient and nauseous all the time needs that! That's a problem too. Grrr. Whatswrong- You described him very well. He is well liked. No one has anything bad to say about him. He is very sweet. He is always loving on me and making promises. If more of them came true it would be really nice. He likes recognition for anything he accomplishes (from washing his own truck to folding socks), but go out of his way to do things. Yogini- I understand that it is very hard to get the full story, especially since it is one sided. After all, I could be some crazy lady. Essentially, about six months after we got together, my boyfriend got company closed down without warning and the family members that he was living with at the time asked him to leave because they were expecting a new addition to the family and needed the extra space. Both of these things were unexpected and had followed a family emergency that had drained his savings. He took a job in my town that payed better than his last job. I offered to let him stay with me (at the time I was not set up to have long term guests but worked it out temporarily) for two to three weeks (which equated to two to three paychecks) so he could save up some money for a deposit on an apartment and first and last months' rent. He never received his last few paychecks from his old boss and therefore, I payed for his groceries and gas and other expenses the first week of his new job. What he didn't tell me was the fact that he was in credit card debt. He ended up staying with me for 7 weeks and I payed all his expenses and some of his bills (credit, insurance, and phone when he was short). He also put me in a bad situation with him overstaying his welcome with my landlord. I found out later he had two other people he could have stayed with. Within a couple of months he had his credit cards paid off and had his savings built back up in the bank. He was supposed to begin paying me back. We move back in together in a apartment that were shared this time. He was working out of town. I did all the shopping, all the laundry, all the cooking, all the cleaning, all the dishes, and baked for him weekly as per his request. The problem was that I was still paying some of his bills, buying all the food, and paying for dates if I wanted to go on one. In the past 2 years he has cost me about 5,000 to 7,000 dollars in excess. In the past few months since my condition has worsened he has started to do more of the cleaning, has taken care of the laundry, and we split the shopping. However, we still only go out with his friends, I still pay for a lot of things (slightly more than half) and do about half the work. Now that I am not doing all of the work I have to live filth. I am just afraid as I am able to do less and less work I will have to live in worse conditions. I am not very dirty. I may leave my books on the bed and my knitting on the couch, but I don't leave muddy clothes on the floor or rotten food on the counters. I am also able to do less because of the apartment he chose. I feel guilty that he has to do stuff for me and I feel guilty that I have to always ask him. Tacky and Daisy- My mom does understand POTs, but she is truly busy and there are things that get forgotten and put to the wayside. She loves me and gets it, but this still happens. People have there own lives and are busy and can't always think about and cater to my needs. I understand that. I don't expect that of my boyfriend. I just expect someone to ask me if something is ok instead of forcing it on me and to exercise common courtesy when you are living with another person, like not leaving trash and dishes around. I really appreciate all of the support and sweetness. Like I said, I am a long way away from family and friends and some of you seem so kind and wise. I am going to sit down with him tonight about trying to get out of the lease, or what we can do for cheap to make the apartment Elfie friendly, or whether I should stay or not. It is hard because he is my best friend, after we started dating most of my other friends weren't as close or are also his friends, but are more loyal to him. I have never ever see him treat his friends the way he treats me, he treats them like kings and queens. Something the fact that I forgive him or something. He can be so emotional sometimes with me and doesn't think rationally.
  11. Thank you all for replying. I'm sorry to have had to make this my first post at the forum. I hope that I did not come off as someone that does not appreciate all the things that my boyfriend helps me with. Rather it is the opposite. I try to always show my thanks for him when he helps me with something. I also hope I did not come off as someone who is anal retentive and has these insane standards that I expect him to meet. I really am just concerned about how his actions affect my health and what I am able to do. It is a difficult situation for me, because I like being independent and do not like to rely on him or have to be a nag. However, everything that he is doing for me now I have done for him in the past, even when I was sick. Now that I am more ill and not in as good of a setup (apartment wise) I am having to rely on him to do things and fight with him for what I need done, or to accept things that really aren't safe and sanitary (roaches and stairs). I took care of the cooking and cleaning and laundry and much more while he struggled during a difficult job transition. However, now that it is his turn to return the favor and help out around the house I feel like I am walking on eggshells about what I say and what I do. He seems to think that cooking me dinner outweighs the fact that he gave me mild food poisoning because of how he handled the chicken he cooked. He gets upset when I refuse to cook dinner because the pan i need is still in the sink from last night and has a cockroach in it because he did not wash it although he said he would. He gets angry when I ask him to take off his boots at the door or yell when I step on the rocks he tracked in, because he won't vacuum before the week is up and I can't do it. So I have to prevent it from happening ( I have balance issues and walking barefoot in the house reduces the amount of bruises I get from smacking into doorjambs and such). Worried Mom-- Thank you so much for your understanding. You have got it exactly right. At times he can be very supportive, and at others, well, not so much. It was so nice to hear that your husband likes to help you out with heavy things (how chivalrous), none of the men in my family are that way. And your right, the water is very easy work for him, as are most of the other heavy jobs he does around the house. He can clean the entire house in two hours, a job that takes me about four, if I can manage at all. Stress is one of the biggest factors with my health. I really appreciate your kindness. Tacky Phlegming -- Unfortunately, I believe our new landlord is a bit of a jerk, and since my name is not on the lease and my disability issues were not discussed, he seems pretty rigid. I really would love to train him. However, I am still working on things like washing your hands after you use the toilet. He is very concerned and wants to help when I am in pain, and he knows what causes the pain, but he cannot seem to not put me in situations that will cause pain. Example: He knows that I do not do well after about eight o'clock at night. This is normally fine as he gets up early to go to work so we usually come home around nine at least if he is working the next day. However, if he is not working, he will keep me out to all hours of the night because he is enjoying himself. Just two days ago we cut short plans with a friend of mine because it was getting late and he had to work (for once I was feeling fine and would have liked to stay). So, he gets the concept of preventing pain and side effects when in comes to himself, but not to me. I have offered to stay home, but he always promises we will go home when I want to and then he strands me somewhere. Being alone would be more expensive for the both of us. That is part of the reason that our relationship would probably end if I decided I would not live in this apartment. He has locked himself into a contract that it would be difficult for him to pay without me. So I feel like I am hurting him by not moving in. I really am not preoccupied with cleanliness. When I was talking about cleanliness standards, they were all potential health issues. I do not expect everything to be neat, spotless, and sanitized. I do not mind a few dishes left in the sink. I just always rinse the food out of mine (so it doesn't rot and smell in the dishes). I also don't leave so many that the sink is completely useless for doing other things until the dishes are done (i.e. piled so high I can't wash vegetables or get a big glass of water out of the faucet or fill a tea kettle). The main reason that the dishes and food messes (like sauce and cereal left smeared on the counters and sitting in the sink) are a concern are because of cockroaches. The area of the country we live in is full of them. Having no food laying around is the key to keeping them out. Any apartment in town is susceptible, but you don't usually have a problem unless food is left like he leaves it. He has attracted them in the past. That is the issue. I think we all would agree that that is a health issue. I always rinse my own dishes and load the dishwasher or handwash them if it is just a couple and I feel up to it and always keep food in its place and wipe counters clean. No double standard here. Other things involve things like taking work clothes off before sitting on the furniture (fiberglass insulation and excema don't mix!) and taking boots off at the door so I am not stepping on rocks and mud. I really don't feel I should have to pay all of the utilities. I am not keeping the apartment freezing. I just want it to be room temperature so no one is sweating. He may be able to live with it being 80 in the house all the time and 105 outside, but he is definitely benefiting from the AC. I just feel when the agreement was to split utilities 50/50, a normal personal would expect to be able to run all the appliances the apartment comes with without taking on sole responsibilities for those bills. I want to run the dishwasher so I can help out more. He is in no way paying for anything. I pay for most the food. I still do most of the cooking (even if I burn it or myself because of POTsyness). In the old apartment I was doing the dishes and cleaning more, but he has made that really difficult. Sophia, don't worry he doesn't have night terrors. I know what you are speaking of. My father has had those for years and can get very violent, to the point of cutting and trying to asphyxiate my mother when she has tried to wake him, as well as doing dangerous things while sleepwalking. My boyfriend is not that kind of violent. He is just like sleeping with some little kids. He flails around and kicks and hits while he is doing it, as well as putting his body weight (and heat) on the other person and sometimes shoving them off the bed. He isn't a serious danger, except for a few bruises and my quality of sleep. He wasn't always like this, but it seems as his own life has gotten less stressful he sleeps less exhausted and more like a kiddo. I'm not allowed to wake him up as he has to be at work slightly earlier than me, so apparently his sleep is more important than mine (grrr).
  12. Hello everyone, I am new to the forum, but have been reading for awhile. I was officially diagnosed with POTS in June of this year but have been having life disrupting symptoms for two years, and severe joint pain for two and a half. It is nice to have a diagnosis, but so far treatment has had little effect. I am a college student and am eight hours away from my family and support system. While I am at school, my support system consists entirely of a handful of friends and my boyfriend. I try to be fairly independent. I am a full-time student and try to set up my schedule so I can safely drive myself back and forth to my classes. I am not a dirty person and can do some light cleaning. I struggle with laundry because I don't have a washer or dryer in my unit, so that adds a lot of lifting and bending and up and down stairs to my day. I cook and do great if I can use the dishwasher. I try my best not to be a burden on anyone, but there are times I am practically bed bound for days and really like to have someone around. My boyfriend and I went through a real rough patch a couple of months ago. Essentially, over a period of two years our relationship went from casually dating, to seriously dating, to me supporting him, to him taking advantage of me, to it being more fifty-fifty. We have not been around each other for several months (I was out of town at the Mayo). Prior to my absence, I was getting in trouble for asking him to pick up after himself. A lot of our arguments centered around the fact that he expected to be praised for doing laundry and occasionally doing the dishes, and would get very upset when I would ask him to not leave food in the sink and dirty counters. While I was away he decided to go looking for a new apartment for the two of us. He signed a lease on an apartment without telling me! I just got back several days ago and was able to see the apartment for the first time. It is a nice apartment, but he really wasn't thinking about me and my health or limitations. First, the place has stairs. There is really no place for me to be able to sit to cook. There is a dishwasher, but it it older and he won't let me run it. If I want to run it or the air conditioner full-time he says that he will no longer pay part of the utilities. He bought a water filter for the sink, but the water is really hard and I still can't drink it, but I am not supposed to purchase bottled water (he or someone else has to go with to carry it and he is tired of it). The apartment is a two bedroom, but he insists on sharing a bedroom and sleeping together even though I don't sleep well with him because he is a violent sleeper. He insisted on building me a desk, which is splintery and comes up to my armpits when I sit down. My biggest concern though is that the only shower in the house is a very small 60s era stall shower. It is very dark, holds steam very badly, and is too small to shave my legs in without folding myself in half. I also cant put a shower chair in the shower. This scares me, because even with short cold showers I regularly pass out in the shower. He says he wants to do the chores, but he has essentially taken my independence from me. There is very little I can do in this apartment to help out. He doesn't exactly have very hygienic practices (like hand washing with food preparation and bathroom use) and I have a low immune system and often get sick off of food he prepares or the way he keeps house. I am afraid to speak up about any problems because then I am ungrateful. The apartment is also kind of far away from most of town. When I am not feeling well enough to drive in, I am isolated. He works out of town and I am often alone until 7 or 8 at night. He is usually the only person I am able to see besides my classmates and occasionally one of "his" friends on the weekends. Sometimes he will be out of town for a week with no warning and I can never count on him being home. Before I got really sick I always used to cook a full meal for him, every night. Now I have a hard time cooking big meals and probably wouldn't attempt anything harder than grilled chicken and or pasta, but he still wants me to cook. I am not even supposed to eat most of the things that he expects me to cook and am supposed to be keeping my meals small. If he cooks he gets very upset if I do not eat it, even though my docs suggested eating a smaller meal earlier than he is home. He is a very sweet guy and he is thinking marriage. Sometimes he really saves me energy and goes out of his way to help and do sweet things. However, I just feel like I have been put in a bad place with this living situation. Me moving out would probably collapse our relationship. I do love him and need his help and support when I am feeling bad. Sometimes I just feel like he puts me in even worse positions with my health with his my way or the highway attitude that he always pretends like doesn't exist when I confront him. I'm so sorry for the length of the post, I just really could use some advice.
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