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Everything posted by tinkerbella

  1. I'm so very sorry to log on tonight and read about your loss of your dear dog. When we are sick they bond with us in a very unique way. My boy saved my life one night when the line from my port's iv severed and I was bleeding out all over my bed room floor in the middle of the night. I was sound asleep, but he wouldn't Stop barking till I woke I saw what was going on. There is a wonderful video online called the rainbow bridge. Grab a bunch of tissues and watch it. It's beautiful, but will make you cry good tears knowing one day you will meet again. I wish I coulld find a man who could love me like my dog does. UNCONDITIONALLY! I will say a special prayer for you right now. Blessings- bellaMia
  2. Thanks for your support, the doc wants me to start using the picc and next week we will put in a new port on the other side. I have loved using the port, especially after I was trainned to do my own dressings. : )
  3. I'm so very sorry to hear about the loss of your mom. I hope you find some peace and comfort in knowing their are people who care for you.
  4. update Sept 2014, had port taken out, as there was a hole in my skin above my port that was not getting any smaller. Two weeks ago when they pulled the port, they put in a picc line. It looked like a smoldering infection going on. i was told that my power port only lasted 3 years anyway and was time to come out. one week later the hole won't heal and I'm bleeding. there is a hematoma in there. : ( I had it checked again when i was having the picc dressing changed. My left arm is all swollen and hurts, and my left leg too. Ultra sound shows I now have a blood clot in my arm. I'm now taking blood thinner enjections twice a day. will address what to do on tuesday after the holiday about a new line. I was told not to fall. lol Guess I need to wrap up in bubble wrap. I asked the er doc, if he knew I was a fainter? He asked from what? I was told I was going to be admitted from my doctor. Oh well, maybe where I am is where I'm suppose to be right now. i hope all is well with all my potsie friends. love, bellamia
  5. I spent many years going to an infusion clinic first for one day, then two days, then three days. Slowly working up the fluids,I wanted it to go in faster... but was told it was slow so I wouldn't go into congestive heart failure. It went in very slowly over many hours and I would spend the whole day at the clinic. After building up to 2 ltrs. three times a week, I would be exhausted from my trips back and for the to the hospital and I was also losing venous access. Years later, I had 2 picc lines put in, as one got infected. I started daily 2 ltr. home infusion therapy over 12 hours. Soon I needed a port put in and we added 2 ltr bag day over 12 hours and 500 mg bag for night over 10 hours. I also get potassium in each of my bags rather than the oral form. I have to add that I have the difficult form of POTS where many meds do not work well. I also notice a big difference between drinking and getting the fluids by iv. I'm also severely dehydrated. Should a bag break and I have to drink I lose my voice and I look dehydrated. When I'm disconnected from my fluids, I start to get all Potsy... It's not fun being attached to an iv all day and night. The day bag is so heavy which flares up the fibro. It can hang on your wheelchair, but twisting and turning to get to it also plays havoc on your body. You need to know where all the bathrooms are when you go when connected. Remember to use hand sanitizer wherever you go, it will be your new friend... Good Luck to all of us on IV Hydration ; ) May we always stay infection free.
  6. Good Luck sweet one. I have been unable to to serve several times due to medical. they have been very understanding. So don't worry anymore about it.
  7. I'm so sorry that your dog was sick and passed away. I lost my other dog of 15 years and it broke my heart. She would lay on the stairs till I would come home from the hospital. Boy, did I love that little girl! She was one wonderful therapy dog for my whole family! She still brings a tear to my eyes when I think of her.
  8. Shakey, My heart goes out to you ...big hugs to you. I have had many pets over the years. My dog senses many things about me. Recently I've been keeping him off the bed, as my nerve pain is so bad. He often finds a way when my BP is too low and lays on me as if it gives me more pressure. The other day he got caught up on my iv line and my port line got torn out. We were both traumatized. No more dog on the bed anymore. Sometimes I feel like I should give him away, so he could have a life where he could be taken out to run and run. He also has a Neuro disorder. I have cried and as he has seized for 15 mins at a time in my arms. Thinking each time this will be the last time. I see him so loving, yet fearful at times. Living with a chronic illness is hard, even in a pet it is so sad to watch. I often see myself in my dog, I wish he could talk and tell me more that was going on so could make life easier for both of us. Maybe, it is why we ended up together.... I think we needed each other. We paean so much from our pets, as we work with them. I believe that they really pick us. I worry about the future and if I should move to an easier lifestyle, would my dog be allowed to move in with me. It's getting to hard to manage my large home now with my progressing pots and sfpn. More housing needs to understand the importance of one's pets in their life to help them continue to maintain a healthy family relationship with their pet as they move. I would be so lost without my furry friend. Good Luck to all ~
  9. Rich I had a problem sending you a large message. Is your mailbox full? I wanted to sent you a list of Boston docs that you might like. I also had some questions for you and news about IVIG coverage. I hope you are doing well. Drop me a line and I'll send you the info. Hope it will work this way.
  10. My doc sent me to him as he thought he might want to write an medical journal on my case. I gave him two chances. Personally, I need a doctor who will spend more time with me. My cardio is the best is MA and sends me everywhere in MGH for testing. You might like to see him. I'll send you a pm.
  11. Robert, All your had me rotfl, and after the week we have had here in Boston, I'll tell you this post reminds me how we all need more laughter in our lives... Thanks for bringing this post back up and welcome to the forum.. I have some new ones to add: You know you have pots when you fall going up the stairs... You have so many black and blues you could play connect the dots... When you have to have foam padding in your bathroom on the vanity so when you faint in the night you won't get hurt... You have note everywhere reminding you to get up slowly!!! You have your smart phone programmed for alarms to go off to remind you about everything... (((((Brain Fog Alarms))))) When people ask you if your going for a hike because you wear a backpack all the time and you have to tell them it contains your iv. When people try to push you in your motorized wheelchair. : ) " We must laugh all the time, it helps to keep us somewhat sane. lol Love you all ~
  12. Here's a few things garlic, onions, olives, hawthorn, alcohol ( too much will raise ), turmeric, ginger, Passion flower, mayflower, stevia, dark chocolate, potatoes, soybeans, skullcap, magnesium, coQ10, potassium, cardamon and there are more ... Just look online right now my dog has to go out. Hope this helps. : )
  13. I also find fish oil that I have to take drops mine.
  14. I will never put color chemicals on my hair again...I used to feel terrible because I was brain washed that blondes had more fun...I don't call this fun! I have naturally beautiful hair that is just fine without the color now. Woman now are embracing their grey hair...I give them more power : ) I think they look great. Why is it men can have grey hair and they look distinguished, but their is more pressure on woman to color their hair? Also,if you read about coloring your hair, it will tell you how those chemicals are going all over your body. Most woman color their hair in the shower. I also feel worse with shampoos with chemicals in them... I have to use all natural shampoos or my symptoms are worse too. Embrace your gray and throw your color away ~ : ) " Hubby will still love you.
  15. Mike, Have you tried when sitting to drink 16 oz of water fast. You could take a salt tab with it or you could add sea salt to the water. I preferred that to the florinef and the miodrine. They both made my migraines worse. I'm wondering if your not pushing enough water in general. I would keep searching low blood pressure laying and sitting on the internet for more answers. Did you have a tilt table test? Keep us posted Mike and I wish you the very best... : )
  16. Are you on any meds now? Anything that may be lowering your BP naturally: foods, vitamins, herbs? MIDODRINE can be taken laying down only in certain pts. I was one, there is a certain percentage of pts who need this. Must be approved by doctor. Have you had a holter monitor done to look at this?
  17. Iron upsets my GI system and makes me sick... although my doctor believes we function better with our iron stores pumped up to around 200. I had iron infusions to do this. They made me so sick...but brought my #'s up quickly. Good ways to get iron in your diet is cooking in an cast iron pan and eating iron rich foods. I had my neuro/ pots dr suggest this way and it was less irritating. I just needed more help. There is also a slow flow Iron that is less hard on the system. I took that for a while also.. I have to take zantac for the upset that iron causes... Does your daughter take on an empty stomach? I take with food. Good Luck and Hope she feels better soon. : )
  18. Rich, Ty for all of your support. You are amazing, keep up all of your great work. Bellamia
  19. Hang in there sweetie. I went through that phase. I stopped Washing my hair every day. I went to once a week it got much better. the doc had me cut it at the time also to help me stop pulling any out. Have you been checked for lupus? I got dxed with sfpn today and they think may have lupus. They have thought this for years and years. We all need to pray for one another and send positive energy to one another. I send you HOPE!
  20. Rich, I just got back back from the doctor and he said I have it .The biopsy showed that I have it pretty bad. He wants me to go for another biopsy I was crying so much that I can't remember what the new one is for. : ( I'm having so much pain in my chest , flank and back. He thinks it may have taken over my GI system and bowel as well. Everything is really starting to make sense.
  21. My ears drove me crazy for years...Finally after being treated for ear infections forever, my PC said that when she didn't take her thyroid meds she got terrible ear pain. I then told her I used to be on thyroid meds years ago and then they stopped them as I was borderline hypo. I had all the symptoms and many docs treat on symptoms. Once on the med, the crazy cycle of ear pain and infections went away. Once in a while I will get one, but I was having non stop pain and I was on allergy meds as well. Hope you find some relief soon. That pain is terrible, well all pain is... Hang in there and keep us posted. Hugs.
  22. Thanks Nicole for those links. I used to use cinnamon for my BP, as it lowers it as well. I think I'll also give it another try now and just take a daily does. And see what happens too. : )
  23. I have had this forever. It is sooooo bad that I have plugs put in my tear ducts. I have to be careful not to rub them out. I need to go back and get new ones on now. Wearing sunglasses indoors helps. Don't use regular eyes drops, you need Preservative free or they will just irritate your eyes. If your insurance will cover them Restasis work well for most people. Severe dry eyes can be a symptom of Sojourn syndrome or Sicca syndrome. Good Luck all and take care of your eyes and see your eye doctor. He found I had retina problems in one eye going on. I've heard other potsie's say the same thing. I also have a hard time with my eyes after the doctor dilates them. It takes days for them to get back to the right size.
  24. I was having legs pains as well. I'm in bed most of the time. ; ( I had also torn my knee joint that they felt could have bleed down onto my leg. Do they keep you on potassium on a daily basis. I take it in my iv and used to take or by mouth. I lose so much with my IBS, so it's important to have it onboard.
  25. I wonder with all your swelling and head aches they were just making sure with the ddimmer that you didn't have a blood clot. I know that I test positive and I don't have one. Many people test false positive. They have given me the VQ scan several times to check my lungs. I think it's amazing all the medical knowledge we have learned from this illness. They have even scanned my legs with ultra sound looking for those clots also after the ddimmer. Alex is right about the condition she is talking about. Nothing is easy. Have a nice night all.
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