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ukwildcat

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    kentucky

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  1. Almost every morning, I wake up and miss the old days. The days I woke up and felt rested and good and ready to start the day. I am so tired of waking up and feeling bad and feeling like I have to push myself to get up and get started. Even if I should be excited about what the day holds, I feel so crappy I don't even want to really do anything. Im tired when I wake up and usually tired and pushing myself all day. I'm so tired of feeling bad. I really just want to be normal again but what is left is just a vague memory of what normal really is. I have to remind myself to be thankful for the many blessings I have. Focus on positive instead of negative. Sometimes my mind remembers and still has the glimmer and want to do things but this stupid body just will not do all it is told to do. I guess it is stubborn like me. We just to do the best with the hand we are given. Some days it is just a struggle and remembering what life was like before just makes it harder.
  2. With my pots I have chest pains a lot, tight chest, stabbing pain under my breast, and some trouble breathing during these pains sometimes. Right after my first pacemaker surgery I had these pains and they kept getting worse and worse and it became harder and harder breathe. I tried to wait it out to see if it would go away but became so difficult to breathe and awful pain that I finally called my cardiologist emergency line and they said to go to ER right away. It turned out that my chest wall had become inflamed.
  3. I have been trying Cymbalta with awful results. Not able to turn tv on due to light or sound and unable to concentrate on computer till now. Finally able to look at computer and make sense of things and this is first thing I clicked on. It made my day. Prior to pots I was an elementary school teacher and I love this. This should be made into a children's book to explain pots to young children. Thanks for bringing joy into my life today.
  4. I saw Dr. Neilson at children's hospital in OH yesterday. I was dx with EDS with a beighton score of 7 out of 9. He is sending me to PT, pain management, and RA doctor. However, we didn't think about it till we got into car that he didn't mention a follow up appointment with him(Neilson). I have a call into the genetic counselor with questions I had after the appt. I always have more questions after I have a while to think about and process the information. Funny I get on forum and read the post and Kris444 had same question about follow up with Dr. Tinkle. Appointment was interesting finding out how EDS is related to pots, GI problems and my space orientation(why I am always tripping on air, running into walls and hitting my head on things). Neilson said I was unusual in that my hands are not as affected as my feet and my large joints(shoulders, hips, neck, back and knees). He said most people have affects of EDS in hands first. I am excited to finally have a dx and start the process of feeling better hopefully. I cant wait to start Pt. I have high hopes this will greatly improve how I feel. Question-does anyone know why I'm being sent to RA doctor? I know it is hypermobility and RA doctors work with that but if dx with EDS already why are many people sent to RA doctors too.
  5. Pink 1975 I am so sorry to hear that your husband is treating you that way. This illness is so awful and someone talking to you that way is unacceptable. I cant image a love one telling me to knock it off and get up off the floor after I fainted. You should be proud of all you accomplish in a day. Right now, I could never have completed all those tasks. Many people with out an illness are not motivated enough to do all those activities. I have lost many friends due to this illness. Many people just do not understand and never will. After awhile, I have decided that I don't want to be around the negativity. It would be so hard to be in a relationship with someone like that, someone you have to be around every day. It just breaks my heart that you are treated that way. I don't know how to correct your problem. However, would he be receptive to the suggestion of couple counseling or therapy. Also, does he ever go to doctor appointments with you? In my experience (15+ years of Pots) the more knowledge people have about this illness or any illness, the more understanding they are. I hope your husband begins to understand or at least learns to appreciate what you do for your family. I hope you have a family member or friend in your life that is supportive of you. My prayers and best wishes go out to you.
  6. At a doctors appointment recently the topic of menopause came up, again. I have asked this question before to other doctors over the years. I said that since I have many of the symptoms of menopause maybe it wouldn't be as bad for me as it is for women that are having these symptoms for the first time. The doctor said that POTS symptoms many times get worse during and after menopause. I have a really hard time with pots symptoms before, during and right after my period. So I was very sad to hear this news, even though doctors have told me this before. I have always hoped that after menopause, I would have some hope of feeling better.
  7. Hholmes13 your cake is amazing. I am very impressed. It is way better than the cakes that I see in the bakeries around my house. I like to quilt, when I am able. When you think of quilting, you think of little old ladies doing it. However, it is hard work. Many days it kicks my butt. I always joke that those must be some strong old ladies. It may take me a lot longer than most people to complete a quilt but I love the feeling of completing a project, other than house work. Even when I can't physically quilt, I can look at books or computer to come up with my next project. I make quilts for family and friends and quilts for people I hear of that are sick. For example a CF patient that had a lung transplant and for breast cancer patient. Also, there is a group of ladies in my area that get dolls and then they make doll clothes and a quilt for each doll. Then, they give them to less fortunate children at Christmas. I have made doll quilts for them. Recently, I learned of a rehab facility in my community that gives quilts to the ladies when they graduate the program. Now, I am working on a quilt to donate to them. Even though not able to quilt many days, it gives me something in my house to do when I feel good enough and something to think about and plan even when I feel bad.
  8. Casper, Just wanting to warn you about getting to close to neighbors. My neighbor also has a chronic illness. We became friends and were friends for 7 years. However, mostly due to our spouses we got into an argument, now we don't speak to each other. Even though my feelings were very hurt, I try to be nice but she doesn't in return. Let me tell you by experience, it is vey rough when you have a disagreement with a neighbor because you see them every day. I am a person that hates conflict and now I seem to have it every time I let my dog out.
  9. I agree. They send you to one specialist after another. Some doctors just want to get rid of us and some doctors would like to help and don't know how. I don't know if it is a problem with everyone but doctors want to keep doing the same test over and over. It just cost my insurance and myself more and more money. They keep on saying they don't know the standards the test were done. I understand that test can be done under different standards, an MRI can be done in different % of slices( I know not medical terms) but why if two RA test come back positive then why do we need a third, lets move on and either test more in depth or for something else. I decided Pots patients just don't fit the standard many times so hard to dx, I guess. Doctors act applaud when I ask questions. When one said who cares if we test again your insurance will probably pay for it, I think that may be one thing that is wrong with our health care today.
  10. I know I shouldn't be complaining when I have a good day. However, good days bring with them their own issues. During bad days I'm just concerned with getting through the day with necessary activities, take the dog out, make food to eat, drink water or G2, get to restroom, etc. When I have a good day it has it's own issues. My house should be cleaner, I miss working, I should be doing more for other people. Also, the list piles up after a bad spell of everything I need to do. I have trouble with even good days health wise not turning into bad days mental wise. Anyone else feel this way??
  11. I have no answers for you but you are not alone with this problem. I also have trouble sleeping at night and I exercise everyday. I am awake till 3 or 4 in the morning. Then after I fall asleep, I wake many times and don't have continuous sleep. I have been having horrible dreams and even when I wake up it feels like my adrenaline is pumping even for hours after I wake. I also get night sweats and chest hurts, it feels like someone is squeezing my heart. I cant sleep late either. I go to sleep at 4 and I am lucky usually if I sleep till 8:30 waking up many times. I try not to take naps because I want to sleep good at night but this doesn't work. Therefore, I just go without good sleep, even though I am so tired. It seems like this problem comes and goes but lasts for months once it starts. This time it has lasted for 6 months so far. Sorry I don't have answers for you but sometimes helps that you are not alone with this problem. I hope you start sleeping better and feeling better. Hopefully, someone out there has answers for you.
  12. I'm so happy that you had a good appointment. It is amazing when a doctor actually looks at the medical records that you send them. Also, that he wants to work with your other doctors is amazing, that is a rare thing. I hope they come up with a dx and a treatment program that will help you. I live by Cincinnati and I have an appointment with Dr.Neilson in April (what they told me was that Neilson worked on Dr. Tinkle's team when he was located in Cincinnati at Children's Hospital.) I have been waiting for this appointment for many months. After hearing about your apt. I am now second guessing myself if I made the right decision with this doctor because Tinkle sounds awesome. I was just trying to stay close to home because my family already drives me hours to see Dr. Grubb. However, a great doctor is definitely worth the drive. Many doctors are a waste of time and create even more stress. When a doctor says what is Pots, or EDs you know the appointment is probably not going to go very well. However, a good doctor is first step(sounds like you found that first step) and you have been in my thoughts and prayers that you find the answers and help you need. Please keep us informed about your progress.
  13. Some of you were talking about drinking something warm. Many times when I drink something hot like tea, hot chocolate, or even soup it many times triggers my pots symptoms. At first I thought it was caffeine but even happens with soup. Anyone else ever have this problem.
  14. I'm so excited for you. I hope you are able to get the answers and help you need. Keep us posted on what happens. Warm wishes and prayers.
  15. I drink G2 and propels but like Snow Drifter, I have found that eating beef jerky and drinking regular water(or G2) helps too. If we are planning a trip, I always make sure to pack beef jerky. It has become a sort of joke with people we travel with, that if anyone gets hungry I am the person to go to because I have jerky hidden everywhere. It seems to help me even when G2 doesn't help. I was thinking it may be combination of salt, water, and protein. Beef jerky has helped me many times. We even make our own deer jerky because it is leaner. I am going to start trying home made sport drinks too.
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