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Roselover

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Everything posted by Roselover

  1. Think I'll go try one right now! Thanks! ~Roselover
  2. Hi everyone! Since I started this post... I have been swimming regularly. I also use the weight machines and sometimes the recumbent bicycle. The weights I use are very minimal ( I go with my daughter who is a dancer and I put the weight at the top and she moves it to the middle of the stake ) LOL! So after almost a year of swimming and exercising here's what I've found. 1. I LOVE the feel of being in the water... it's a weightless freedom I never feel at any other time. Some times I just float around and swim underwater like a seal just to feel the freedom of movement! 2. Crawl stroke is still almost impossible for me - even after a year of consistency. I swim breaststroke and back stroke and side stroke, attempting to use all my muscles. I often use a kickboard. When I first started I only swam with a kickboard becuase I was too scared. My husband would sit and watch me. But after a while I gained confidence and did it all my self. 3. The hardest and scariest part is getting out. I almost always feel close to passing out. I do lots of head down, stooping etc... and I swim in the lane right next to the stairs and there are benches right there to sit. 4. The very hardest part - like may of you have said... is the shower afterwards. My gym does have a handicap shower, but often, there are others who have put their clothes and towles on the chair - this frustrates me a lot when I know I need to sit to shower. 5. I enjoy the weight machines... many of them allow me lay back or I don't sit up long. I avoid all the machines that require me to lift my arms above my head... but my muscles have become much stronger. 6. At the begining, I noticed some very slow improvement in my stamina... but it only went so far. I've now faced the fact that doing this exercise in not about getting stronger. I have exersice intolerance... and it doesn't go away just because I am consistent. This has been hard to accept having been very athletic before this illness. But it is about keeping muscle and trying to avoid osteoperosis in the future, so I force myself to keep going. A typical week for me is exercise one day with a long nap that afternoon - worse fatigue the second day and by the third day I exercise again. It's is basically ALL I can do in life! But I've learned to make it fun and going with my daughter is really great. 7. I CAN NOT drive after I have exercised!!! My sight is often blurry- my head doesn't think straight... etc... so my daughter drives. 8. There are times where my fatigue is so severe that I can not exercise at all... then I just rest... take a break even for a month or more and when I can, I get back to it. I figure this is going to be life long! As for ideas for excersing in a pool... I would suggest anyone who is just starting to just enjoy the weightlessness, swim around alittle, and do some normal stretches you might want to do on land. Holding the side of the pool so you're vertical is best for the POTS... kick your legs a little, stretch them back and forth and don't push too hard!. And we need to not be afraid to get our heart rate up a little... that's what exercise is all about... of course - we mustn't go too far with this either. But talk to your cardio about how high he/she is comfortable with when you are exercising! When my HR goes to high with swimming - which some days it doesn - I just stop and go very slowly with a kickboard or just hold the edge and swing my legs! Well there's a swimming novel for you!!! But I thought I should share how it's gone for me! ~Roselover
  3. Sending love and prayers for you and your family Maxine. Grieving is a hard thing to do... I will pray for your physical strength through this time. (((HUG))) ~Melanie
  4. Maxine, just wanted to tell you that I too am praying for you, your family and your mother. I echo the prayers that cardiactec wrote. Just wanted you to know. ~Melanie
  5. Sleep seems to be an issue for many of us! I heard from Vanderbilt this week that they have a sleep study underway. I hope to get more info about it this week and will let you all know what they're looking at and doing wiith it. I read an article recently about sleep in a Fibromyalgia journal. They quoted a doctor at OHSU (Oregon Health Sciences University) where they are doing some of the top research in Fibromyalgia. She has an a amazing regimine of meds that she prescribes. She has the patient alternate them. On that premise, I've been trying to find three different sleep meds to help so I can rotate them. Ambien has been good, but as many here have found, it is working less and less. Clonazepam has been great, but I don't want to take a benzo everynight. So the challenge has been to find a third med. Right now I'm trying a combo of Trazadone and Unisom....but it leaves me very very groggy in the morning.... My PCP wants to send me for a sleep study because she feels over her head in trying to prescribe these meds. But I've been afraid that, though the sleep centers are good, they are not familiar with these autonomic causes of sleep disturbance. But I may have to do it anyway. So as soon as I know anything more about what Vanderbilt is studying, and doing within their study, I'll let you all know. ON ANOTHER NOTE: Tearose.... I remember all the compression you use... and I have a seat cane... but could you tell me more about what you called your "formula for electrolyte supplementation and protein supplements"? I am really struggling with nutrition and would love to hear what you're doing in this area. I think I saw in another post (I'm going to go look for it) that someone orders an electrolite mix. I drink a lot of gatorade... but I am sick of the sugar. Thanks! ~Melanie
  6. My PCP was excited to find me a doctor that specialized in POTS. I waited almost a month for the appointment. The doctor walked in and introduced himeslf and said "I specailze in Potts disease. Unfortuneately, that's not what you have..." and then he explained that Potts was degeneration of the spine due to TB. So we waited a month and paid a copay to be told that I should be thankful I have POTS instead of Potts! (which I am... it sounds terrible!!!) I went back and explained the difference to my PCP and told her to change my file to say "Partial Dysautonomia" instead of POTS so it wouldn't be misunderstood again. ~Melanie
  7. Hi Tearose! It's so nice to hear from you!!! Anyone heard from Briarrose lately?? Tearose, I really appreciated your post on your trip to Mayo. I think it just has to be Ok for us to take some time off and then come back to pursuing answers! My challenge is always when to drop it and when to keep seeking! I do love my art.... though, this has been such a bad physical week that all I've done art wise is talk to other art friends on forums. But all my painting stuff is ready for me when I can do it and when I can't I know it's there when I can get back to it. Thanks for leaving a message for me!!! Love Melanie
  8. I had a GI doc tell me that I could live on Boost or Enurse if I had to too. He said that Instant Breakfast is almost as good. You might try adding a little instant breakfast to your milk. It adds a lot of sodium and vits. I have several different stages of eating. When fairly normal I drink a lot of gatorade (rain only - it's the least sweet) and I eat little bits all day - staying away from seeds, nuts, whole grains, all fresh veggies and any cooked veggie with a skin. So no peas, corn, beans. I do cook beets and sweet potatoes and freeze them and put a little in my smothies. I also have a protein powder I add to my smoothies. When I can tell things are slowing down or the pain starts I move to mostly mashed and liguids - smoothies, boost, instant breakfast and maybe mashed potatoes with no skin. Then when nausea and pain are real bad, I move to two-four days of NOTHING but Gatororade and Ginger ale. On the second day if I'm doing OK.. I might add some soda crackers. Then if I'm doing Ok I move up to the next level of eating. If I'm not doing better or I get worse during this time, I call my doctor for IV fluids and give my stomach a complete rest. I now have orders for home health care so they come out to my house, put in the IV and leave me the bags to change. Nothing in mouth (except meds)for 24-48 hours. This usually does the trick and while still on IV' fluids I begin taking in ginger ale and gatorade and then move back up the steps. So far, for the past year, this process has kept me out of the hopsital!
  9. Melissa - so so good to see a long post from you again!!! My tears flowed with you as I read about your shower... how good that must have felt! I think I personally have understood the reality of your situation and speaking it outloud and honestly for us is very helpful to me. Love you so much and I'm so glad to hear from you. I'll talk to you very soon I hope!!! And, thank you to everyone who has helped keep us up to date on our Sunfish! ~Melanie
  10. Oh Shoot! I just wrote a long response and then it didn't post!!! Well, now I'm exhausted, but instead, I'll just send you a hug Corina and thank you for your loving words of encouragement! We'll see if this one will post..... ~Melanie Oh goody!!! There it is!!! It wasn't there when I refreshed the page! LOL! xox, ~m
  11. Oh Corina, I agree with you with my whole heart!!! The things I find most difficult though, is that I can't "settle" down into "this" life because this life keeps changing! I keep thinking - ahh... now I know what I'm dealing with... and then bam... a new symptom. But you know what? I think part of that is what is making me stronger. I have really tried to keep my focus on my life's goals and just adjust how they are going to look based on my health. So I continue to readjust and readjust - and as much as that causes periods of grief and uncertainty, it also strengthens me to life my goals out better and better each day. My life goals have been to Love God and Love others (to put it very simply) I used to think those things depended on what I could do - but I am learning they can happen no matter where I am in life. They look different, but being sick and having new symptoms doesn't change living those out. I used to be good at crying during the grieving stages... but I think it's becoming a refelex to resist it on a physical basis. You know, like a physical reflex to sit before you faint... I avoid crying to avoid the symptoms it causes... I guess I need to take a time to just let myself grieve again though. Thank you so much for your encouragement! It must be a bit stressful living in the midst of remodeling! I'm going to send you a PM with my new email address so that when you can get back on your computer, you'll be able to get me. Are you looking forward to the garden stores opening up? I am.... though I don't have much gardening I can do anymore. I am going to buy some Hollyhocks for in front of my window where I sit in my recliner. My sweet hubby has basically taken over the rose garden and lovingly cares for it for me. I had a long border of perennials I'd collected to make an english garden border along a white picket fence. We took all of them out last fall. It was sad - but I knew they needed to go because I couldn't take care of them. We have planted a new hedge rose along the fence and I hope it will begin filling in this year! Nice to see you and chat with you both! ~Melanie
  12. Pooh... hubby and I prayed for you again last night.... I pray for you often. Hope you begin to get out of pain and recover soon. Luv ya! I miss chatting with you in emails... when you get back home and are more yourself, we'll have to get back to that! luv ya, Melanie Pooh... hubby and I prayed for you again last night.... I pray for you often. Hope you begin to get out of pain and recover soon. Luv ya! I miss chatting with you in emails... when you get back home and are more yourself, we'll have to get back to that! luv ya, Melanie
  13. Emily - you silly goose! You make me smile soooo much! You KNOW I understand about emails and getting the energy to do anything! And yes, I think I do escape in my art... but I also channel my thoughts and heart back to God through my art which strengthens me. But, yes... I am so frustrated I want to scream! And grieving... just to say the word I begin to tear up! I think I really need a good cry, but it takes way too much energy to cry and flares all my symptoms so I hold it back. Wish I could come see you! I'd love to see your room... See ya later alligator, after while croccodile, not too soon old baboon...... LOL!!!! ~Melanie
  14. That sounds sooooo fun! Kinda like getting out of the cocoon for a few minutes huh? This weekend, I was looking at the Cedar Point amusement park website. They have actual videos of most of their roller coasters. I could never survive really riding all those coasters, but watching the videos was really fun. They're taped like you're really on it. Driving the track with a real race care driver - WOW! ~Roselover
  15. Yes...yes... and YES! I've just recently had the same problem!!!! After about 7 weeks, my hearing seemed to get better and then worse and then better........ I was sent to a specialist who took great interest in my dysautonomia... he thinks he as another patient with it and I gave him the dinet and ndrf websites and he looked them up and learned a lot! Yeah another doc who is now educating himself!! But I digress... sorry I had a hearing test and was told I had NOT lost hearing! I was very surprised as I had experienced the same symptoms you mention and couldn't even hear a conversation between my husband and daughter at a distance I would normally hear. But he said he was sure it had to do with my neurological system not communicating correctly as it does with other parts of my body. So I feel like I can't hear, but I'm not losing hearing. I don't like the first part when it flares... but I am so comforted that it's not an actual hearing loss.... But he put me through a battery of tests for the dizziness, unbalance and vertigo. They showed that I have some damamge to my left inner ear which is causing all of that. He examined a recent MRI I had and could find no reason for the damage and said he suspects some kind of circulation disturbance (which we all know we have LOL) and that somehow it caused this damage. However, I also have weakenss on my whole left side... so don't know how all that plays in..... So there you go... probably more than you needed to know, but at least you know you're not alone in the symptom and there are some things they can look at to confirm whether it's a true hearing loss or another neurological issue. Do you have a feeling of fullness...like your at a high altitude too? I get that too. He told me he thinks that much of this and the tinnitus (loud buzzing, whirring, ringing etc) is due to muscle strain. If you have any questions... ask away... I'll share as much as I possibly can. Oh... he was an Otologist/Neurotolgist/Skull Base Surgery Specialist. ~Roselover
  16. Oh pooh....sending you lots of gentle warm love. Praying so much for you dear!!!! Anyone who talks to her, please relay all these messages so she knows how much she is loved! ~Melanie
  17. Hi Corina!!!! I think of you often! I'd love to hear where you are at with your health and how things are going for you! love, Melanie
  18. Hi Amby, No, you probably don't know... I've not been around much. I'm tired of the complaints... ME... not others LOL! I don't have my list of symptoms at the bottom of my page. I have POTS... but also gasteoparesis, neurological problems, severe fatigue and brain fog, sight problems and now an inner ear that is damaged by who knows what, and a CNS that works best with some CNS depressants. But... I'm pretty content... most of the time... and then I hit those days where I want to scream - ya know? Thanks for caring... ~Melanie
  19. Hi Corina - ready for spring flowers yet? Hi Poohbear - I'm praying for you dear... hope to hear you're out of the hospital soon and that H is very helpful- mine was! Hi Melissa - no, I know you're not able to check in, but I had to say Hi anyway.... I love you dear and pray for you often Hi Em - watch for my email.... Hi Briarrose... don't see you posting much either! Hi EVERYONE!!!! I know I know, you don't see me here much. I check in and read a lot, but don't post much anymore... I feel lost in what to do...we're all so different with different problems....I'm overwhelmed with my illness so I'm trying to think of other things. Been painting a lot and am now selling quite a bit too. I sit in my recliner, take naps, wonder what will be next.... After reading about Pooh and Melissa's ongoing saga... I just wanted to say Hi and tell you all I love you. If any of you want my email, send me a PM so we can keep in touch. Hugs! Melanie
  20. Sophia, Sounds like you already have lots of help, but I do ebay too so if you need any more - send me a PM and we'll talk. I sell art, but have also sold personal things. I actually have two ebay ID"s !! It really is easy and Paypal makes it easier... but I do find myself having to be very careful with my orders. I can get confused easily and if I'm not careful, I can package the wrong item or write my listing wrong. But you could easily set your auctions up so that you only had to check in 5 days a week. However, if you set a store, it'll have to be 7 days a week. Good luck! ~Roselover
  21. Sheridan, I've been on domperidone for over a year now. I had hoped to take it and then take breaks so that it wouldn't lose it's effectiveness, but I can not go without it. Without I am nauesous, pain in my upper stomach and end up in the hospital. So far, the only side effect has been the very smallest amount of lactation... which has not caused me any problems. I dread the day I have to go without or it becomes ineffective. I really keeps me going right now. It did not worsen my POTS and hasn't had any other side effects. Hope this info helps. ~Roselover
  22. Tammy, as the others have said, I too have a very hard time singing or reading outloud. This illness is all about learning to restructure life and cope. When I read your concern I coudl relate to you not wanting to lose this time with your daughter, so I had this idea. How about getting books on tape and listen to them together? Also, children's music on tape or children's music videos. You can still snuggle and be together, but it'a adjusting to where you are physically, I know it's hard... I've been doing it now for several years, and I keep finding things that I have to adjust... I just always ask myslef, "how can I still accomplish my goal in a different way?" ~Roselover
  23. Ah! I should have read this one first! Please Em... tell her I send her a big hug and my prayers and thoughts are with her!!! Thanks for keeping up with her progress. ~Roselover
  24. Ditto what Megan said.... Sunfish (Melissa) has a great and detailed post and I also posted as well as several others about their experiences there. For me it was well worth the trip and effort - but it's not for everyone. ~Roselover
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