tinkerbella

Mito Action http://www.mitoaction.org/tips-and-tools-for-living-with-mito http://www.mitoaction.org/energy-4-education http://itunes.apple.com/podcast/mitoaction.org-podcast/id290467730 Some of these are for kids, but tomorrow is Mito Awareness Day ~ BellaMia ~ x's to all ~

Lynne, I'm Single but L@@king just West of Boston ~ LOL !!! Love long walks on the beach in my wheelchair ~ I can drive, just choose not too, as I don't have a vehicle that holds my motorized chair. I have many mode of transportation, walker, cane, all depending on where I'm going and if they have a chair there. I met a nice Doctor on the way to MGH last week. I need to email him and let hem know how I made out. I would love to start a local support group in the Metro West Area of Boston, as I do believe that When you meet a Potsie it's like meeting a long lost relative who really loves you. I have 3 people already who want to be in a group. Anyone else let me know ~ If I can help you our Lynne count on me. I'll put a link here about mito with audio and slide shows to watch. Education is the key to everything. So I would read up on all you can if you think that 's what is up with you. Email me anytime for any questions ~ xxx's You are never alone here ~ http://www.mitoaction.org/files/awareness%20week-2011_1.pdf love ~ Bellamia ~

I'm using the Curlin 6000 and wondered if anyone else has used it ? Suddenly my computer screen has turned half pink. Maybe, it's age or my son said did it get near a magnet? Would be a shame if I can't use it around my computer now ~ Any thoughts??? I will call the company tomorrow, but just thought I'd ask ~ Thanks, BellaMia ~

Hello Lynne, I was dxed with POTS almost 4 years ago ~ You can read a lot of my story on my about me page, but I'll fill you in ~ Just before the POTS dx I had a level 2 and a level 3 cardio plummy test @ MGH in Boston. the first was suggestive of Congested Heart Failure and the next on Neuro/muscular Disease. Just before that I was given a muscle biopsy in my left upper arm looking for Mathis gravis, it was thought that the muscle came back look like a type muscle, fybromyalgia and I alreadly had that dx a;ong with chronic fatigue.. Slowly I would find out I had many of the layers that made up pots, but as 4 year went by I got worse and the fatigue left me bedbound. I had gone from hydration in the hospital 2 days a week to now neding it daily 2 leiters. A simple trip out to the doctors in the am and I was asleep for the day. Soon my body was having episodes @ night that were pretty scary. Head droops, hitting my head over and over again till told my PC and MY CARDIO and he told me the new work being done at MGH on MITO and POTS and the relationship with the failed level 3 cardio plummy test that I failed almost 4 years ago. ( I have read that other stress tests are not this invasive and give the same results ) I have havd other stress tests that tell me I am fine. My cardio believes MGH is where I need to have my stress tests, and now will not put me through this much stress as I told him I know I can not do it again. I honestly thought I was going to die when I went through the second test and they were so very , very nice to me.... I thought they were prepared for the worse. MY CARDIO then sent me to a NEURO @ THE MOVEMENT CLINIC @ MGH IN BOSTON, WHO MADE THIS MAGIC ALL COME TOGETHER. I call it magic, because he LISTENED TO ME, said he was so sorry that my life was like this. Then tried to make the plans. I must send him a Thank you for making all of this happen So, will this be the missng link to the puzzle? I don't know, and all I really want to know is if there is a gene in the family so that my children and my grandchildren could be treated earlier and saved from all the **** that I have been through. I need something right now, to make my Whole Family look at me before it's all too late ~ This is not a game , but the sand in the timer is running out. I LOVE my family so very much. I can't make them include me the way I yern to be included. They have there lives and mine is too complicated to even look at ~ I just have to start living my life alone, and accecpt the days I see them, cheridh the times we talk on the phone, as D I A M O N D D A Y S as I'm told I S P A R K L E and L I G H T U P when they are all around me or talk to me ~ I WANT TO BE A SPARKLING MOMMIE AND NANNIE FOREVER MORE. I LOVE MY KIDS MY GRAND KIDS SO VERY, VERY MUCH ~ <3 BellaMia ~

Awww corina, You sure know how to make my day brighter than sunshine ~ thanks ~ <3 Bellamia ~

I'm finally home from my trip to MGH in Boston for the workup for Mitochondrial disease. They made me feel like a celebrity, as everything was carefully planned by a team of doctors, as my neuro was leaving for vacation. The floor said they were not used to having someone with POTS, so I did have to fight a bit with the interns to educate them that you can't just pull all of my meds after years of fine tuning." NO worries," the head of the team would say each day and something else would be pulled and I would have to fight for while being as fatigued as I've ever been in my life. Everyone was so nice to me...When I arrived to the OR for my muscle biopsy, they wondered if I was a celebrity under a different name. lol they said they hadn't had that much setup for someone for a simple procedure. I told them I was a STAR ~ lol We had a lot of pre-biopsy laughs and decided what was best if I did have mito. Seeing my mom had a hard time being put fully under, they changed the plan at the last moment. When I could feel the cut they gave me more and next thing I knew I woke up dreaming some crazy dream. Then itching like crazy needing bennadryl and ice packs to stop the itching from the pain meds they used. I had no idea how big that incision was going to be, NO MORE mini skirts for me ~ lol I had this silly thought that I would have no pain. they had told me I had diminished everything and you can stick me with pins and I feel nothing. But stab me and I guess I still have FEELINGS ~ Very deep feelings ~ More meds please ~ When some doc came to check out the nice work done, he said you will need more meds than a Vicodin for that. So I asked, but none were written..... I was in lots of P A I N till the wee hours of the morn till the Docs on call could be reached. So make sure you have pain meds written on board before that take that muscle out ~ Thought I would never walk again, but yes I'm walking still in pain. Each day gets better. While I was there they opened a whole new floor and I got transferred over. Each patient has a private room and they are very, very nice. My nurse had 2 patients so she was able to really help me out a lot ~ Next, on my agenda was my power port. I got a purple one ~ I like purple ~ For days I felt like I had done the wrong thing and had this foreign body in me that I wanted to rip right out. Day by day it get easier to get used to ~ I will now need more skilled nursing to help out with it ~ I had liked the new nurse that I had gotten just before I left for the hospital ~ I also had really liked the one I had before her. I have been through so many changes that it has been very hard on me. They want me to come back to their ED clinic to see someone about my episodes at night. They think they may be fatigue and I should try to limit my computer use. Try to get in a better sleep schedule. If needed they will admit me and watch me under camera and do an egg for the episodes that I have been having. While there they had me on holter monitors 3 of them for 72 hours, but impossible to fill out or really capture anything when I'm in bed all the time. On cardio machine for the nurses to monitor, I had already done the Blaird 111 cardio plummy stress test that came back neuro muscular and I had told them I couldn't do it again this time. Well, If anyone has any questions, let me know? I won't know for sometime the results of the biopsy. The only thing I noted is they had me on IV potassium the whole time I was there mixed with sodium chloride. I usually take it by mouth. I've been craving frozen bananas 2 of them every day. I feel slightly better. Is it the rest, iv potassium, not doing my own IV treatments??? I don't know, was I low??? No one tells you anything because your doctor is not there. We shall see... Has anyone else had this all done before @ MGH or anywhere else? Would love feedback if you have any ~ Boy, did I miss my friends ~ love ~ BellaMia ~

Hi newbie, Welcome Aboard to our wonder land of support here ~ Brain Fog was my biggest problem so tiny, tiny, tiny, and I mean really mean tiny chips of the med were started on me after a regular does made me so forgetful. I would suggest going slow on any new me if you are sensitive to meds in general. My other thought is could it be that your Dysautonomia had progressed to the sweating point that most of us live with? Are you on any other meds that you take at the same time? Sometime the interaction of meds after taken you will have a heat feeling come over you and not knowing this, I would assume it would cause a panicky feeling. Just some thoughts, but when in doubt, I always check it out ~ I'm glad you found us and if I can be of any help to you feel free to send me a message. Hugs ~ BellaMia ~

Thanks Julie, Hope all is well with you these days.I sure needed that ((((E-Hug)))) tonight ~ T H A N K S ~ TIME FOR A BEDTIME SNACK! BELLAMIA~

Rockies Girl ~ Hello Sweet one, Now don't cry or I'll cry more." Makes me think of my little Granddaughter who's Gram pa died this past May ~ Ever since she thinks I'm going to die, and when she cries I cry and she say's, Nannie, don't cry or I'll cry more." I'm sorry your having such a bad week also, I'm so self centered this week which is so not like me. I'm so overwhelmed, been waiting for help all day to come, the insurance company sends a homemaker out. Someone I don't know, and she arrives when I'm at bed @ 8 pm. Sorry the lights are off and no ones home when it's that late and I've never met you before. I needed help with a shower and getting my hair washed. She called earlier, and was coming but my son was here and it was his grandmother's birthday and she passed away in January. So, we needed are time together. I wanted some hugs today. So she said she stop by later, but I didn't think she meant that late. I have so much to do, but I'm going to call it a night. My body H U R T S so bad tonight ~Also, the line I type are so wavy and I just had that checked out a few months ago. I'd like to leave with this prayer of friendship tonight. The prayer is by Vienna Cobb Anderson and it about says it all... Prayer for Friendship You have blessed us, O God, with the gift of friendship, the bonding of persons in a circle of love. We thank you for such a blessing: for friends who love us, who share our sorrows, who laugh with us in celebration, who bear our pain, who need us as we need them, who weep as we weep, who hold us when words fail, and who give us the freedom to be ourselves. Bless our friends with health, wholeness, life, and love. Amen. Love to all ~ Bellamia ~* --

Everything is so OUT OF MY HANDS even my ride ~ I have to take 2 cabs to get there. I can call MGH @ noon to see If I have a bed or not. So, I have to setup the cabs. They can't guarantee that they will not be @ my house before my phone call. Can't they write a note, usually I'm the only one on the Whole Bus ?????? Feeling kinda mad today and things are feeling out of control. I need a good nap. God Please help me ~ I need your help, as I can't do this all alone anymore. Bellamia ~

Guess it's kind of hard to let go of the fact that I was a children's program director, teacher and responsible for so many children over the years. Thanks for the good advice. Now I need to work on calling my cab. May we all reflect on 9/11 and Count Our Blessings~

THANKS for the sweet responses. kayJay, I'm not on that famous book in the sky any more. They are in the works of becoming open to the who internet. Soon people like us who liked our privacy will have none at all. It already started. So I closed that chapter or my book and if you can search yourself online, watch out you may be surprised @ what you find your self linked to. If not now very soon you'll show up. I can email you more details if you would like. Sadly 30 year olds know more about all of this than we oldie but goodies with potsie brain foggy brains do. When our Books on that famous sky, are wide open with personal info, there's a problem....BIG ONE! Any who, Tinks, I like that name, he, he, he ( those of you who know me know why) I'll tell you one day soon too. the support I have is in my bedroom drawers. They are called B R A S, S U P P O R T H O S E, and those B O D Y S H A P E R S ~ NOW don't get me wrong, my daughter has her hands full a 7 and 4 year old, one in school in all day and the other in school @ afternoons. Then there is soccer practice and games.. We haven't even celebrated my birthday together. I'm a Labor Day Cry Baby, and my daughter is always away with her dad @ her camp and his camp is next door. Along with her in laws, friends, one of my sons. I used to go there when I was married to her father. Now everyone, and I mean every is invited there but me. My feelings hurt so bad about that also. It is a 6 hour trip, but I have not had a vacation in years. Her dad has another family with a woman 15 years younger than him, his youngest child, my granddaughter's aunt is 9 and my granddaughter is 7. My youngest son, listens to me for hours on end on the phone, mows my lawn, takes me to the store, Sunday morning we go to a little thrift shop to find antique bottles to bury for the kids to dig up in my magical garden to make memories that will last a lifetime., he teaches everything I don't know how to do and then more on the computer. My oldest son is my muse, he's an artist @ school We video chat, his art is so beautiful, he finds art like mine, and encourages me... When it was me that encouraged him to do art. He thanked me years ago in a letter for encouraging him to go to art school when all the other parents were discouraging them not to . He told me he thought he wanted to work with kids, and it touch ed my heart..being a teacher myself. He has returned to collage again, @ Bar Harbor MA. a place I would love to live, but may never get to see again. ~"MY DEAR CHILDREN, are all young adults, that I love with all of my heart and would drop anything just to help them or to be with them, because that's what the love of a EverReady's Mother's Heart...She just does " ~ Bellamia ~

I miss you all and I'm not well @ all right now ~ I really need your prayers right now. I didn't make it to addmission to MGH in Boston yet. We had a hurricane out here. She must have had PMS or broken up with her Man cause she was a grouchy ~ I was protected and blessed, but damage all around my home. She took fquite a few shingles from my rooftop to let me know she went by and shut down my power. Mother Nature is mighty powerful ~ Made it to the ER @ MGH and they thought they would admit me, but my new midline when my nurse went to change the dressing pulled the thread out and back in again. X- Rays showed it is in the wrong place. They were willing to change it that night, I refused because I was all alone and It hurt so bad for days when I had it put in. I cried and cried like a baby once I got home and the lidocane wore off. They said I could still use it, but to only for infusion, no blood draws. BP 176/80 I was now at risks for superbugs that are now at the Big hospitals. I didn't want to get a new one put in if I was getting a port within days, and I thought this was an admission for Mito workup and for epilipsey. What was I suppose to be doing???? Playing figure out the dx???? What a bizzare night. Then the doc says, when we do the muscle biospy for Mito for you, you are going to have to go to rehab after. I said , NO Way, I'm not doing that!!!!! My nurse told everyone, I have no memory??????? She won't answer my calls now. The day she told everyone was her last day with me. I was Bull. She's the one with the memory problem. She can't fill my pill box right. Houston, I think we have a problem~ Ok, I live alone~ I asked my kids, I'm ok. My family doesn't get involved... My sister said tonight don't worry. Yeah, be Happy ~ I'm very upset here. I try to tell my daughter tonight that you know this is not all normal. They told me on the phone for me all procedures will be done in a cardic operating room. Do you understand what I'm telling you and I would really like to see the kids before I go. My sweet granddaughter, said the other day when my sweet daughter dropped me off, "Why don't we ever go and stay with Nannie?" Then she said," I really want to." Then we hugged and kissed and parted and off I went alone as always. Funny or maybe not, the week before I listened to my 85 year old room mate right back as they would tell her she was going to rehab. My heart went out to her, she was so sweet and she thanked me for talking to her. I felt like the man behind the curtain. Our curtain was always drawn, she saw me pushed in and a few times in between. She kept saying, "your too young what are you doing on this floor? It was telemetry, They thought I had a heart attack, blood clot, or arm infected I told her over and over again. I loved her, She made me think of my mom and I miss my mom. I wonder if one day my kids will ever miss me. I feel like I'm only a burden, but I know a little girl that really loves me and on the way into the hospital she asked me if we could have a special day together? I said ,"yes" She asked if I still drove a car and why not? I felt sad and sadder knowing her mom will never let me take her anywhere alone. I said maybe mom will drop us off at the craft store when I come home and we'll get your birthday gifts, would you like that? She said, "yes." That is what I live for, a trip to the craft store with my little girl and my little boy who thinks my exercise bike in my bedroom that I can't use, is a gift that I bought him. Who could ask for anything more? I should be admitted Monday @ MAGENERAL Hospital for several days. I'll most likely be alone, as always ~ Take care my friends ~ God Bless or whomever you believe in watch over all of you ~ love <3 Bellamia ~ love to all ~ Bellamia ~

Was Once upon a time a long, time ago... there was this young woman named, Bellamia who worked in the medical field ~ Just spent last night in their ER, how S T R A N G E after all these years. I saw sitting there sitting out Pots 101 ~ They never heard of it, as my midline was infected ~

Heather, That really meant a lot to me tonight. Thank you so much ~ ; ) It's just being heard when we are all alone that makes a difference. Thanks again for the prayers. Bellamia ~

Well no phone call today, do my cardio must not have been back from vacation to help arrange the admission. So another day thinking and waiting around without much family support ~ OK What do I want when I know what my family is like? That is what my youngest son says to me this morning. So today I'll change my expectations. I'm not going to get anything different. So I'm going to ask my Friends and Fellow Potsies for support and prayers. I'd be lying if I said to you I wasn't scared at all right now. I'd searched seizures here on this forum and it said you don't want to get a dx of epilepsy. It puts all kinds of restrictions on your life. Then the fear factor started creeping in and then I said, "what life????" " Come on do I really have a life?" Seems to me the doctors think I do. Remember to tell them if you live in your BED ~ Last night was really bad with the so called episodes and then this morning they are almost like a dream. Merrily, Merrily, Merrily So is life like a DReAm? Oh, please pray for me... I'm kind of scared and I can't count on my family, they pray for everyone else, cause they don't think I'm sick! One does, he sick also, takes one to know one. Bellamia ~

I have had 3 and they all showed pots but 2 and 3 my cardio asked what was wrong????? Well 2 I had IBS all night long and I thought I was going to be sick on the table. So my bottom number kept getting higher and higher ~ Why didn't the neuro ask me what was wrong? I was unable to be put up the full tilt and for very long I was so sick to my stomach. # 3 I arrived on time and my cab was due back before they had started my test. I called the cab company and they said, "well we don't think we can even come and pick you back up then." I got off the phone and went to see the secretary of the well known clinic and she took the phone number and I went in for my test. I went up on the tilt only 60 degrees and was so sick. my pots was there alright, but once down only lasted maybe 3 mins. my out of control HR took too long to come back to baseline. The used my tilt as a classroom case. I was furious as they had put into anxiety by running late. They knew I arrived early and they ran late. We discussed it at my next visit and that was when I found out they used my tilt. I asked him to change my record as he had messed up my life now. Whoo Hoo, I made it to the classroom I taught the students something. Lucky me~ He begged me to come back again, but his boss the big doc had no personality at all and would only see me for five mins. I think anyone who is worthy of class room material is worth more than that. Also last time I met this big guy he threw his arm up in the air as he didn't know how to treat my case. NO WAY ~ So remember be an advocate for yourself when you have a ttt. Tell them if you were sick the night before, your holding in farts, have to go to the bathroom. anything that could change the results of your tests. Otherwise they will say your.. Stressed, have anxiety, make up something so please COMMUNICATE ~ Always talk cause they don't know what is going on ~ Half the time they are students in there.... Enough said ~ Bellamia ~

Hello everyone~ What a disaster this has turned out to be ~ The first infusion co was a nightmare. I need to know what to do with all the supplies I'm now charged with and services that were unacceptable. I will not rip them apart here, but please when a company will not contact you before a home procedure, that should have been my FIRST RED FLAG. I don't think I'm allowed to say what happened. But, I had to change companies the next day and now I have all different bags of iv fluids and I don't know what is going to happen insurance wise. I have been really sick, exhausted and kind of out of it in this strange world where I can't believe all that has happened to me. I thought a midline was in my upper arm and it went in my ac that has been used for 3 1/2 years.... I'm now feeling pain in my upper arm and each day it gets higher.. I could be that I spent an evening at MGH hospital In Boston, with my neuro. I was stressed as I went all alone in my motorized wheelchair. Laugh right out loud if you will, but I can't back up and I can't drive in a straight line. It is a rule going by the transport I use that you back in to the lift. Now, it's kind of like when I can't pronounce a word and someone catches it. Then it only gets worse... I had to take two buses to get there and two back. Get the picture maybe I tensed all of my muscles and the one with the midline was trying to eject it from day one anyway. Well today, I can't stand without my heart rate going out of control. My 8 hour home infusion just ended for today. My nurse, doesn't want me to go to my er and they won't drive me to Boston, or Newton. My cardio comes back tomorrow from vacation. The neuro wanted me to know that there is a 3 month waiting period to get into MGH for what he wanted to do to me. I explained that my dear son was going to lock my bedroom door so I wouldn't accidentally kill myself in the bathroom at night. Also, I had to let him know that I'm not the normal POTS patient. I love this doctor, he has taken over for the person who used to see the adults. So, I believe I'm his first POTS pt. He looked at me and I looked at him and our eyes locked. He sighed, I sighed and I knew he knew as he said I'm so very sorry your life is like this. We talked for a while about how communication is very important, as I felt perhaps my caretakers did not know me as well as I thought they did. That someone else had a life and was going to school with mito while I lived in bed... did my doctor not know that. Did he think I had a life. So everyone at every visit make sure you tell your doctors everything. Even if you told them before, they don't remember. They don't realize we have no life unless you tell them. Next, I needed a doctor who would take on a possible epilepsy case. "What????? I was saying in my head, no you have it wrong... I just have seizures, it's part of Pots." Then, I needed a Port placement, The Blaird 111 stress test, "No I can't do that again It will kill me, I already had it." "I can't do it again!" I hope he remembers I came back neuro/muscular disease. I wanted to say I can't die right now will you listen to me. My granddaughter is very worried about me right now. YOU can't make me die right now, as it will break her little heart which is really very big for a little girl. I have promised her, I'm not dying right now even though it feels like it right now. Her granddaddy died in May and she is still a mess. My Mngel nurse met with her this past week to answer all of her questions. The first one was, "Is my Nannie going to die?" So, right now I'm on call for anytime, Monday, Tues, Wed.... so he said I better perform..... so I need so of your prayers please, I don't want another thing wrong with me but you all know how it is here. I need them to catch on video what happens at home. Please pray that they see it and that they give me my meds correctly. Every hospital doesn't want to give me may meds correctly so I get all messed up. The pharmacy won't give it to me as it is more cardizem cd than a horse can take in one day. My mom had trouble waking up from anesthesia, so I worry about that. My grandfather died from anesthesia also on the other side of the family he was also a firefighter and had complications from smoke inhalations. I also want to tell you all I love you and my computer is dying. I'll try to keep you updated on my ipod. It's kind of hard on the ipod. I know God is with me holding my hand and the Blessed Mother is holding the other., so my hands are full, but a good full ~ Blessings and Love to all ~ Bellamia ~

Sorry Sophia3 I love my modern junk and just thought that someone else might read this post and see you can throw away almost everything you own and just have a smart phone. lol Hope you found the watch you wanted. I'm just trying to simplify my life now and wish I had an I touch years ago, then I wouldn't have all this junk that I'm trying to get rid of now ~ Have a good night ~ Bella ~

Why Ty corina ~ I try my very best to keep the spirits up over here, otherwise the dog would be board silly ~ I'll be ready to catch those healing thoughts in my catcher mitt. I've never missed one sent my way ~ thanks again and have a lovely evening ~ Bellamia ~

Ty corina ~ I'll be in good hands tomorrow. It's real ouchy today though. I'm going to have to ask my dog to get off the wedge and let me put me legs back up now. Come on Boy, come lay beside me. ;3p woof ~ Go fetch me some food ~ lol ~ Bellamia ~