well the greatest news for this week is my cousin Brooke successfully had a baby boy Blake Emmerson Huber.
I think I am going to start a caringbridge web site for medical updates my goal is to teacg my mom how to do the posting for when I am in thwe hospital or having a surgery nest time.
I'd like to report that Kendra Springs is home again now!
her family used caringbridge and I think it is an awesomr news gadget for those sick and their family or friends to keep updated and can make commentw in the persons questbooks!
I'm still dealing with to much pain, and the pain doctor has not returned our calls in thee weeks worth of tries. My pain seems to be higher now the shots andother things makde it less painful abour 2 weeks, i also noticed around my ovulation and periods i hurt worse in my side
Well this is short but I need to go ly down.. please continue to pray for me and my family as well as Kendea Springs and her family, she may need to undergo a bone marrow transplant to make sure all the cancer is gone but first she meeds to gain more of her strength back, they ised a different chemo in NYC than what she has recieved since her cancer was discovered in April here in Indianapolis and she's been dealing with nasty fatique and nausea she can't keep food down at all.
take care everyone! please post or email me at amberv1981@gmail.com if you'd ;like anymore information or would just like to write to say hello!
Thursday, September 1, 2011
Monday, August 15, 2011
pain specialist, in town dr. appt and this weekend
well since my last post last week, i went to my in town doctor because the pain in my side got worse and i was hoping for some kind of UTI or bladder issues, bad new/good news it was nothing serious *had to undergo a CT scan immediatrely) ad news is it's just pain from probably a spine tumor! nothing they can do! i then went to a pain specialist on Friday my neurolosurgepon and my neurologists both talked about doing epidural type injections into my spinal cord where I'm free of tumors to kill my nerve causing the pain, but the first thing this doctor said was it's not possible into the spinal colum it's to risky. I asked if there was anything he could do for muscle spots, he did injections into three sore muscle masses and that did provide relief a total of three days, I'm allowed to have the shots once a week, but my mom gets tired of driving to Indy so much! I didn't stay home with my aunbt and a friend over the weekend I joined my family down at my sisters for my niece Megan's 2nd and Heather's 31st bday parties.. so i missed my reunion, I hear not many showed came thought, none of the peo0ple I knew well from school days were going except my friend Laura and her husband David. anyone who reads this really pray for me, I am really lost with why I've got to suffe4r so much with no end in sight. my family keeps talking about a family vacation in the year 2012, if i feel as bad as I do now, that's going to be over a year of bad suffering, death is not in my near future but I'm pretty suire I'll not be able to put off surgery that long tumors grow spraticly, please pray for my family to understand this, they just keep telling me I'm sorry you have to deal with it all, but... they need me here so i keep waking up in the morning and going with them but it's getting mroe and more difficult to wake up in the mornings! so be praying if I am too make it til October 2012 that some miracle happens that there is something they can do for the pain, and lord for bid pray that the tumors don't grow! thank you!
Wednesday, August 10, 2011
Dr appt for my breathing
well two down, one to go!
I've managed to get through two of my doctor appt this week all threee have been in or are in Indy and all have been before 10 am! I'm tired my parents are napping as i type!
So my breathung specialist was not to happy I haven't worn my mask with the bi pap machine at night *like I'm supposed too* the last 5 or so months but her frustration really wasn't directed towards me! I see two breathing specialists and i went to the other one when I stopped being able to wear my mask due to it causing me more pain in my chest and not being able to sleep with it on plus losing 20 pounds made all the mask they have too big *don't ask me why they have no mask small enough n this town for someone who is 29!
anyhow I have to have a sleep study and she wants to see me in six months which to me seemes like she doesnt' care really if i get through the sleep study and wear my mask!
She did say I can't have surgery until i see her in six months and have worn my mask at night. So we will see!
My fear of surgery is having a breathing tube during the operation which is second nature for most but when you're breathing is as bad as mine it means I'd have tons of troubles getting off the thing and they'd have to do a trachea and I'd need to use a vent, I really don't want that because it is not living but artifical breathing!
I keep telling my parents that I just can't fight anymore nor wish to keep living if my pain stays as bad as it has been lately.. but I'm not near death either so i feel kind of ripped off! i feel i need some huge miracles to either get worse rapidly or get feeling better soon! living witrh this pain is really hard I've never had this much pain before please be praying about Friday's dr appointment which is with a pain specialist and hop0efuly he cabn help that day somehow!
I am suapposed to be staying home this weekend with carious peop0le while my aprents and Heather and Noah go down to my sisters for Megan's second bday party and to visit!
I have my ten year reunion from high school this Saturday, can't believe it's been ten years already! hopefully I'm not in to much pain and can enjoy seeinmg people there! thankfully Laura and David could take me to the reunion andstay with me some!
until I write again take care to you all who read my blog!
I've managed to get through two of my doctor appt this week all threee have been in or are in Indy and all have been before 10 am! I'm tired my parents are napping as i type!
So my breathung specialist was not to happy I haven't worn my mask with the bi pap machine at night *like I'm supposed too* the last 5 or so months but her frustration really wasn't directed towards me! I see two breathing specialists and i went to the other one when I stopped being able to wear my mask due to it causing me more pain in my chest and not being able to sleep with it on plus losing 20 pounds made all the mask they have too big *don't ask me why they have no mask small enough n this town for someone who is 29!
anyhow I have to have a sleep study and she wants to see me in six months which to me seemes like she doesnt' care really if i get through the sleep study and wear my mask!
She did say I can't have surgery until i see her in six months and have worn my mask at night. So we will see!
My fear of surgery is having a breathing tube during the operation which is second nature for most but when you're breathing is as bad as mine it means I'd have tons of troubles getting off the thing and they'd have to do a trachea and I'd need to use a vent, I really don't want that because it is not living but artifical breathing!
I keep telling my parents that I just can't fight anymore nor wish to keep living if my pain stays as bad as it has been lately.. but I'm not near death either so i feel kind of ripped off! i feel i need some huge miracles to either get worse rapidly or get feeling better soon! living witrh this pain is really hard I've never had this much pain before please be praying about Friday's dr appointment which is with a pain specialist and hop0efuly he cabn help that day somehow!
I am suapposed to be staying home this weekend with carious peop0le while my aprents and Heather and Noah go down to my sisters for Megan's second bday party and to visit!
I have my ten year reunion from high school this Saturday, can't believe it's been ten years already! hopefully I'm not in to much pain and can enjoy seeinmg people there! thankfully Laura and David could take me to the reunion andstay with me some!
until I write again take care to you all who read my blog!
Friday, July 29, 2011
important doctor appointments
well, i know I am offically the worst blogger alive! i just don't usually have anything to post on a daily basis. But I've got two pretty importnt doctor appointmkents in mid August that I'd like to ask for stedfest prayers for. the first one is August 9 at 9am. this appointment is with a breathing specialist to check my O2 levels while I walk, I also must have another sleep study to see if my apnea is worse the same or better! i am supposed to sleep withu a cpap machine because I quit breathingt pretty frequently while I sleep, but about 4 months ago, the air gong into my hest stated causing me pain where I huad surgery a long time ago in my esophagus, it feels likle my esophagus moves, very painful, hopefully my weight loss has made that tad better but with my wt loss comes the mask issues, I am really pete in my face, of all the pepolple in the world wheyeso need cpaps they don't have any small enough to fit my face without le1 my aking into my eyes! My breathing while i walk is better though at lesst to me it feels that way! my biggest fear has always been the vent, i am so sscared that since I can not use the mask or tolerate the air flow in my esophagus that she is going to tell me i must get a trach and use a vent, this is my worst nightmare coming true to fast! I DO NOT WANT TO LIVE ON A VENT! please pray she has some kind of magic and figures out a way to help me first by trying everything possible without doing a trach/vent!
On august 12 i finally am getting into the pain specialist PTL! my pin has become even more unbearable, it's become so bad in two different places, one is where they keep wanting to do surgery the other is where they thought shots, so i amhoping aginst hope theycan do some shots ASAP and in both locations just not one! my kids viosited for a week, the pain from being so active I was about to call the surgeon to schedule surgery, it was nasty! in fact I've been on the computer for a whole hour today riught now and my pain is horrendous, so this will be cut short i am afraid!
please just pray for these appointments, I'd like to ask you all to pray for some wonderful miracle to happen, a pastor friend of mine says miracles are a wonderful thing to ask for, we just never know the way God is going to work His miracles. My hope in a miracle is that I can learn a way to make my pain tolerable again. that my breathing can be better since I have lost the 20 excessive pounds!
please pray for my family too, we are in this together, even if I get my prayers answered there is still a lot of stress on those who have to watch a person suffer!
much love all!
Amber
On august 12 i finally am getting into the pain specialist PTL! my pin has become even more unbearable, it's become so bad in two different places, one is where they keep wanting to do surgery the other is where they thought shots, so i amhoping aginst hope theycan do some shots ASAP and in both locations just not one! my kids viosited for a week, the pain from being so active I was about to call the surgeon to schedule surgery, it was nasty! in fact I've been on the computer for a whole hour today riught now and my pain is horrendous, so this will be cut short i am afraid!
please just pray for these appointments, I'd like to ask you all to pray for some wonderful miracle to happen, a pastor friend of mine says miracles are a wonderful thing to ask for, we just never know the way God is going to work His miracles. My hope in a miracle is that I can learn a way to make my pain tolerable again. that my breathing can be better since I have lost the 20 excessive pounds!
please pray for my family too, we are in this together, even if I get my prayers answered there is still a lot of stress on those who have to watch a person suffer!
much love all!
Amber
Tuesday, July 5, 2011
MRI Neurosurgeon visit
well i got some good news for once! not going to schedule surgery quite yet!
I've got two locations that hurt pretty badly. the tumor at T2 and a tumor that is on T6-T8 the T6-8 is causing me more pain than the t2 tumor at this time. I've got a nasty ache pain all over my mid spine into my ribs and stomach and hip on the right aide of my body. He is going to get me into a pain management doctor hopefully soon. my next step will be trying an injection into my spine i believe that is to help with my pain levels. I had no damage from falling hard on my back a week ago nor had any new tumor growth visiable in the MRI but swelling does not show up in MRI'S!
We are all super relieved at this point i do not need surgery yet, but the doctor thinks i should do the surgery sooner rather than later. the concern with surgery is that my breathing will be so bad that I will have trouble getting off the breathing tube from surgery and end up needing a trachea with a vent and I don't want to live that way!
please keep praying that this little injection helps my pain it is becoming unbearable!
thanks everyone for praying and sending positive thoughts!
much love
Amber
I've got two locations that hurt pretty badly. the tumor at T2 and a tumor that is on T6-T8 the T6-8 is causing me more pain than the t2 tumor at this time. I've got a nasty ache pain all over my mid spine into my ribs and stomach and hip on the right aide of my body. He is going to get me into a pain management doctor hopefully soon. my next step will be trying an injection into my spine i believe that is to help with my pain levels. I had no damage from falling hard on my back a week ago nor had any new tumor growth visiable in the MRI but swelling does not show up in MRI'S!
We are all super relieved at this point i do not need surgery yet, but the doctor thinks i should do the surgery sooner rather than later. the concern with surgery is that my breathing will be so bad that I will have trouble getting off the breathing tube from surgery and end up needing a trachea with a vent and I don't want to live that way!
please keep praying that this little injection helps my pain it is becoming unbearable!
thanks everyone for praying and sending positive thoughts!
much love
Amber
Tuesday, May 31, 2011
a whole lot lighter!
So here is some good news on my week last week and a helping of some not so good news to0!
I've been walking almost daily since it's been warm enough too outside but prior to the nice weather I started wlking at the mall and at Target and wal mart instead of using my wheel chair to get around. after my trip to the Bahamas in Feb I was up to my highest weight ever and excperiencing some swallowing troubles. I had a swallowing culture done and it showed where I had my tumor in my esphagus like 10 years ago was now not shutting when I was done eating and my food was coming back up making it feel like everything I ate was stuck. After a few months of getting sick everyday. Four doctors kept mentioning all my thousands of problems would be better if I just lost weight! not an easy task when you don't exercise right?!
so in mid Feb my friend Josh started taking me to the mall to walk, everytime i went i walked a bit further. Once i started doing this, i just stopped using my wheel chair Id just walk holding o9nto someones arm or pushing a cart or something. I had more energy and kept getting more strength but I hadn't changed my eating habits yet so I still wasn't reeally losing weight. Josh then told me abour counting calories so I started doing that and I kept walking. Once the weather turned warmer outside I started walking everyday by myself, it felt good to do something all by myself for once!
last week when i weighed in I had hit the over 20 pounds lost mark!!
I was bad this past weekend but there is nothing this week that will habe a weigh in AND today I started counting my calories again and getting back on track!
my bad news is on Sunday during my walk my right side didn't feel right so I decided to cross the street to come home (I normally do not cross any streets i just turn around and walk the long way home) I mis timed my step onto the curb and flew forward from losing my balance. I scrapped up my knees pretty well and my right shoulder and my left arm *both surgwery spots) have not been feeling very well. please pray I didn't damage anything.. today is the first time I've typed on a computer and it's been a slow paindful process!
however, I've walked everyday! just not by myself!
hope everyone has a great day!
please be thinking on my neighbor Teresa Rohler whop needs to have surtery on her rotator cuff pm Monday, she'll be out of commissiopm up to 6 weeks!
I've been walking almost daily since it's been warm enough too outside but prior to the nice weather I started wlking at the mall and at Target and wal mart instead of using my wheel chair to get around. after my trip to the Bahamas in Feb I was up to my highest weight ever and excperiencing some swallowing troubles. I had a swallowing culture done and it showed where I had my tumor in my esphagus like 10 years ago was now not shutting when I was done eating and my food was coming back up making it feel like everything I ate was stuck. After a few months of getting sick everyday. Four doctors kept mentioning all my thousands of problems would be better if I just lost weight! not an easy task when you don't exercise right?!
so in mid Feb my friend Josh started taking me to the mall to walk, everytime i went i walked a bit further. Once i started doing this, i just stopped using my wheel chair Id just walk holding o9nto someones arm or pushing a cart or something. I had more energy and kept getting more strength but I hadn't changed my eating habits yet so I still wasn't reeally losing weight. Josh then told me abour counting calories so I started doing that and I kept walking. Once the weather turned warmer outside I started walking everyday by myself, it felt good to do something all by myself for once!
last week when i weighed in I had hit the over 20 pounds lost mark!!
I was bad this past weekend but there is nothing this week that will habe a weigh in AND today I started counting my calories again and getting back on track!
my bad news is on Sunday during my walk my right side didn't feel right so I decided to cross the street to come home (I normally do not cross any streets i just turn around and walk the long way home) I mis timed my step onto the curb and flew forward from losing my balance. I scrapped up my knees pretty well and my right shoulder and my left arm *both surgwery spots) have not been feeling very well. please pray I didn't damage anything.. today is the first time I've typed on a computer and it's been a slow paindful process!
however, I've walked everyday! just not by myself!
hope everyone has a great day!
please be thinking on my neighbor Teresa Rohler whop needs to have surtery on her rotator cuff pm Monday, she'll be out of commissiopm up to 6 weeks!
Wednesday, May 18, 2011
health status of the week
so I've been having trouble with my vision the last couple months. My eye started bleeding again in early January, luckily I've only dealt with minor issues associated with it. I had another laser treatment that made it stop bleeding but I've still got a little blood left but it hasn't changed for the worse in awhile. The last month my eye has been going super cloudy and blurry like clock work at 7pm. I have been going to my cornea specialist still every one or two weeks for the last 5 years! I really like the doctor though so that helps!
Last week when I went I asked about my eye giving out, he thought maybe the cornea moves when I am tired or it just gives out for over use, but early last week I noticed if I put my pressure drop in earlier my eye didn't go bad so when I went last week to the eye doctor my pressure was REALLY high (35) my norm is around 18. For the last week I've been using different medicine to keep the blood from worsening and a pressure drop still and my eyesight hasn't given out in about 5 days!! my vision was better today too, i saw 20/60 with the naked eye no special shield that hasn't happened since about December! my pressure was better today but still high but it was lower that is the good point!
I've been feeling weary though. tired of being deaf, visually impaired and in pain please send us all some good positive vibes or prayers please.. it's hard to talk about it to those i love the most who want/need me here but I've been fighting now for over 16 years and the last 4 I've been in a ton of pain, deaf and visually impaired, before I lost my vision I could lip read at a 85% accuracy which made it seem like I wasn't deaf at times, I felt included in conversations for sure!
Im tired of people talking around me but no one letting me know enough to feel apart of the conversations.
Good news I got my laptop fixed today, should be able to post More now. I've been sharing the computer room with Noah and Megan where the crib is at and with my eye giving out at night I've not had much computer time,
I just might be boring that's all!
have a great evening everyone!
l0ve
Me
Last week when I went I asked about my eye giving out, he thought maybe the cornea moves when I am tired or it just gives out for over use, but early last week I noticed if I put my pressure drop in earlier my eye didn't go bad so when I went last week to the eye doctor my pressure was REALLY high (35) my norm is around 18. For the last week I've been using different medicine to keep the blood from worsening and a pressure drop still and my eyesight hasn't given out in about 5 days!! my vision was better today too, i saw 20/60 with the naked eye no special shield that hasn't happened since about December! my pressure was better today but still high but it was lower that is the good point!
I've been feeling weary though. tired of being deaf, visually impaired and in pain please send us all some good positive vibes or prayers please.. it's hard to talk about it to those i love the most who want/need me here but I've been fighting now for over 16 years and the last 4 I've been in a ton of pain, deaf and visually impaired, before I lost my vision I could lip read at a 85% accuracy which made it seem like I wasn't deaf at times, I felt included in conversations for sure!
Im tired of people talking around me but no one letting me know enough to feel apart of the conversations.
Good news I got my laptop fixed today, should be able to post More now. I've been sharing the computer room with Noah and Megan where the crib is at and with my eye giving out at night I've not had much computer time,
I just might be boring that's all!
have a great evening everyone!
l0ve
Me
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