hey there punks and kittens~~
sorry it's taken me a while to get an update posted. there has been a lot going on. thanks for your patience.
my doctors and i dont believe the lidocaine/steroid injections and/or the lidocaine iv infusion treatments are really doing any good. in fact, most of the time i feel worse for days after treatments with no pain relief once the treatment effects wear off. doctors say that i am still pretty close to the baseline i was at when i first started seeing them. no improvement really. so this coming monday the 23rd will prolly be my last round of the lidocaine iv infusion. but they wanted to give it one more try.
many of you know that the neurologist i was seeing was a quack. i am seeking legal action against him. this is still in the beginning stages. and go figure, my employer's medical leave reps denied my application for extended medical leave based on what this fucking idiot that calls himself a dr had told them. thing is, i have letters and scripts in his handwriting that completely contradict what he wrote to the medical leave board. so now, i have to go thru the appeals process. they said could take from 30-180 days. and in the mean time i still have NO PAY. i told the claims rep i find it frustrating, ironic, and confusing that i have seen 16 doctors in this time off and they base their decision on the one idiot i saw that i am trying to sue. my luck is outstanding.
now my pain dr is referring me to a different neurologist at a different hospital. pain dr wants me to have another round of brain and spinal mri and emg. thing is, they cant see me until january 4th! the fact that this is taking so much time is hurting me a lot. as of april 2010, i no longer have a job. i only get 1 year of approved medical leave. and since my extended medical leave has been denied, now they have me on a temporary "personal leave". this is worse. this still keeps me attached to my employer, but i have NO pay AND i am now going to be billed for my health insurance. i know, i know, at least if have health benefits... but without pay, how do they expect me to pay for them?
i have moved out of my roommate situation and back to my house that i own. my sister and her kids were renting my house until they could get their own place. they moved out in october. just this last week i moved back in to my place. my roommate situation was getting out of control. i'm not going to express all the details... but it was not a good situation... and in fact, i think it was a huge additive to my already high stress and anxiety levels.
now i am back in the house that i own and am trying to sell. when i moved out of my roommate situation last week, i put everything in storage. so the only stuff in this house is me, my dogs, my nephew's old bed (which the dogs and i are sleeping in!), and the dining room set i am trying to sell. hoping that the first week of december will be ready for open houses. i'll keep you all posted. i'm trying to sell it by owner right now. i just want to get out of it. i dont want to have to upcharge a ton of money just to pay a realtor. we'll see how that goes. i am also trying to sell the fridge and stove/oven if you or someone you know might be interested.
my pa's (stepdad) mother is in the hospital with a lot of cancer and is not doing well at all. "they" dont think she will make it to the end of the year. i hate when they try to tell someone "you only have this much time left". they dont know. we dont have expiration dates. and i think if you tell someone they only have a certain amount of time, they get that in their head and heart and maybe dont try because they are counting down the days. it's a miserable situation. brian (my stepdad) has been at the hospital non-stop. he's suffering very deeply about this. without going in to their family dynamics... brian lives the farthest away and has been camped at the hospital... while her immediate family that lives just minutes away hardly stop in once a week. brian's heart is just breaking. and there is nothing any of us can do to make any of this better for him or his mother. it's just so sad.
i had another round of ultrasounds yesterday to recheck the ovarian cysts. i wont go in to the gory details. i dont get the results until december 4th, but the tech said it looks to her like the huge cyst on my left ovary might be getting smaller. they said that cysts can disintegrate... but that it'll be happily unusual if this one (because of the size - the cyst is the same size as my ovary) disintegrates rather than ruptures. i've had some pain for a couple of weeks, but they said it could be slowly breaking apart rather than one huge excruciating rupture. i can do without the excruciating! so, fingers crossed, this will get rid of itself.
there is more going on... but i'm kinda tired of typing right now. i know things seem to be crazy for so many people right now. i see posts on twitter, facebook and myspace and i am astounded by all of the miserable situations people are having to deal with. broken hearts, broken homes, illness, death, medical, financial, emotional... i just wish the best to each and every one of you. i love you all dearly, and even though some of us only chat online, i still cherish any contact i can get with you. (even though i would much rather give you each *hugs* in person!)
take care of you and yours.
much love.
be well.
~angela
Showing posts with label medical. Show all posts
Showing posts with label medical. Show all posts
21 November 2009
03 November 2009
asking for help
alright.
*breathe*
i think, at this point, if you know me you know that i am currently on approved medical leave without pay. i have been on medical leave since may 15th. i have had ZERO income since september 15th. if my application for extended disability thru my employer is approved, the earliest i would see a paycheck is january 25th.
this is what it is coming down to. i am going to need to ask for / accept financial assistance. i have applied for state assistance but my application is pending approval which they said could take about another 3 weeks for an decision. this is for the michigan food assitance program. according to my application results, they say i dont qualify for cash assistance. i have no idea why not.
i applied for forbearance on my mortgage. in 5 years i have never missed a payment. now i am 2 months behind. my application is still pending at my mortgage bank, also. and low and behold, while i am awaiting the bank to make a decision (which they said could take 30 - 60 days) i received a notice today that due to taxes and escrow my house payment went up about $20 per month. lovely.
however, i do have the house for sale. hopefully my first open house will be this weekend. i figure i am on medical leave and cant do anything really, so the days i dont have packed with dr appointments, i am just going to sit at the house with my "open house now! come on in!" sign in the yard. i know the market sucks right now, but my house is in a really great neighborhood and i only want what i owe on it. oh yeah, and i am trying to sell my appliances individually for some quick cash.
i was approved for disability assistance on a small personal loan that i have. it's only a couple thousand dollars, but the insurance on the loan agrees to pay the full amount of my monthly payments while i am on disability. they even kicked in retro payments. yes!
additionally, i have medical bills racking up and still have to eat and pay for home utilities. i keep the house lights off as much as possible. i keep the gas heat down and just layer my clothes and cuddle with my doggies.
i have never had a credit card. which may be a good thing, so that i'm not racking them up now. however, it also means that in my current urgent situation, i dont have anything to fall back on now that the cash i did have is gone.
anywhom, so, yes, i am to the point i need to ask for help. i have never done this. i have always been able to take care of myself and anyone else that might need it. this is new and very uncomfortable for me. but i dont have much other choice. i have had some offers from family / friends wanting to send me money. up until this point i have turned them all down.
long story short, i need help. if you are willing and able to loan me anything financially, PLEASE KNOW THAT I WILL PAY YOU BACK! --AND THAT I WOULD BE EXTREMELY APPRECIATIVE! i am going to keep a journal of anything i get and payback every single penny as soon as i can. however, please keep in mind that "as soon as i can" might not be for a couple of months. i'm still in the process of making payment arrangements with everything listed above... but i am hoping, if all goes well, to be moving in the right direction by february.
as it stands now, i need about $4,000. any small amount would be helpful.
words cant express my deepest gratitude for any help at all.
even the smallest amount is huge to me right now.
i love you all oodles and bunches!
be well.
~angela
*breathe*
i think, at this point, if you know me you know that i am currently on approved medical leave without pay. i have been on medical leave since may 15th. i have had ZERO income since september 15th. if my application for extended disability thru my employer is approved, the earliest i would see a paycheck is january 25th.
this is what it is coming down to. i am going to need to ask for / accept financial assistance. i have applied for state assistance but my application is pending approval which they said could take about another 3 weeks for an decision. this is for the michigan food assitance program. according to my application results, they say i dont qualify for cash assistance. i have no idea why not.
i applied for forbearance on my mortgage. in 5 years i have never missed a payment. now i am 2 months behind. my application is still pending at my mortgage bank, also. and low and behold, while i am awaiting the bank to make a decision (which they said could take 30 - 60 days) i received a notice today that due to taxes and escrow my house payment went up about $20 per month. lovely.
however, i do have the house for sale. hopefully my first open house will be this weekend. i figure i am on medical leave and cant do anything really, so the days i dont have packed with dr appointments, i am just going to sit at the house with my "open house now! come on in!" sign in the yard. i know the market sucks right now, but my house is in a really great neighborhood and i only want what i owe on it. oh yeah, and i am trying to sell my appliances individually for some quick cash.
i was approved for disability assistance on a small personal loan that i have. it's only a couple thousand dollars, but the insurance on the loan agrees to pay the full amount of my monthly payments while i am on disability. they even kicked in retro payments. yes!
additionally, i have medical bills racking up and still have to eat and pay for home utilities. i keep the house lights off as much as possible. i keep the gas heat down and just layer my clothes and cuddle with my doggies.
i have never had a credit card. which may be a good thing, so that i'm not racking them up now. however, it also means that in my current urgent situation, i dont have anything to fall back on now that the cash i did have is gone.
anywhom, so, yes, i am to the point i need to ask for help. i have never done this. i have always been able to take care of myself and anyone else that might need it. this is new and very uncomfortable for me. but i dont have much other choice. i have had some offers from family / friends wanting to send me money. up until this point i have turned them all down.
long story short, i need help. if you are willing and able to loan me anything financially, PLEASE KNOW THAT I WILL PAY YOU BACK! --AND THAT I WOULD BE EXTREMELY APPRECIATIVE! i am going to keep a journal of anything i get and payback every single penny as soon as i can. however, please keep in mind that "as soon as i can" might not be for a couple of months. i'm still in the process of making payment arrangements with everything listed above... but i am hoping, if all goes well, to be moving in the right direction by february.
as it stands now, i need about $4,000. any small amount would be helpful.
words cant express my deepest gratitude for any help at all.
even the smallest amount is huge to me right now.
i love you all oodles and bunches!
be well.
~angela
15 September 2009
angela medical update after 1st lidocaine iv infusion
first off, thank you to everyone for your well wishes, thoughts, prayers, meditations, and such while i have been going through this miserable medical mystery. i appreciate your support more than i ever get the chance to tell you. thank you.
yesterday was my first round with the lidocaine iv infusion. i think, initially, i was more worried about the procedure than i was about the after-effects. the medical office requires that you have a driver to take you home after the procedure. my sister took me for this appointment. thanks sis, i love you! i got checked in at the front desk and then a nurse came and got me. she took me to this little room with an over-sized medical recliner, a heart monitor, iv stand, and a waiting chair. she had me sign some papers and she explained to me how it works. she was super nice and kinda relaxed me when we started talking about our pets. anywhom, she hooked me up to the heart monitor and explained that once she got the infusion going she would start at the lowest setting and gradually increase the levels depending on how i was doing with it. she got my iv started (she was good! i barely felt a thing!) and set me on the first level. she said that basically i would start to feel like i had one tooo many margaritas. (which is why you need a driver) she sat and talked with me for a few more minutes and since i was doing fine she kicked it up a notch and left me for a bit. the receptionist came back and wanted to know if my sister could sit with me. i said yes, of course. Heather came back and said that she was going to walk around the mall but it was closed that early in the morning. so she sat with me and we chatted. i could tell i was feeling more and more drunk and i kinda had to concentrate on not laughing most of the time. nurse kept checking on me and kicking it up to the next notch. i was really having to focus on talking with Heather... but it was nice to spend some time with her. i love my sister very very much.
eventually the nurse said "now you're at full blast!" yay! i could certainly tell! it was so weird. i mean, i've been drunk before, but i havent drank in a couple of years and just sitting there with the drunk feeling coming over me was odd. she left me at full blast for a while then came in to disconnect me. she said i did well and that the front desk would set me up with another infusion 4 weeks from now. earlier, the nurse had explained to me that the people with the best results after this treatment usually are the ones that go home and do nothing but rest. she said no mowing the lawn or doing laundry or anything like that. she also said that they need me to keep a journal of how i feel from now until my next infusion. she said that i wont feel better right away. she said it will be slowly noticed things... like... i'll notice while standing in line at the bank that it doesnt hurt so much to stand there, or it doesnt take as much out of me to vacuum, or i can wash my hair, tie my shoes, or hold the phone to my ear for longer without so much pain in my hand and arm... and a list of other examples. she said they need me to pay attention to all those sorts of things and journal them.
i checked out and they set me up for another infusion on thursday october 15th. we got out of there and sis took me home. my roommie, Michael, had stayed home to watch my doggies for me. KaiYin specifically since she is only a few days out of her 6th cancer surgery. i got home and c r a s h e d! i didnt just feel drunk at that point... i felt hungover. i felt miserable. my entire body was angry. i fell over on the couch and was attempting to explain to my roommie how it went and i think i just passed out. he let me sleep. i woke up a few hours later, still "hungover". i asked Michael if he could maybe fix some dinner while i showered. he did. my shower wasnt really as relieving as i had hoped. but dinner was yummy! we ate and watched a movie, then i cuddled my doggies on my couch while Michael played online and read his book on his couch. i guess i must have passed out again because i didnt wake until this morning. suppose i needed it though.
and how lovely that i get to wake to dealing with medical bill collectors. really?! the bills they are calling me about are from appointments on 05.11.09 and 06.11.09 ... may and june... it's only september! it's been like 3 months and i am s t i l l on medical leave for the same reason i was then and they are already threatening me with collections?! they say i have 15 days to pay a few thousand dollars IN FULL or they will send me to collections. really?! you people are ass holes. and i realize some people "are just doing their jobs" but you know what? you dont have to be condescending, heartless rocks during our conversation. when i worked for blue cross and blue shield in north carolina i actually got "talked to" by my team leader many times about the fact that i was "helping clients tooo much" (kinda like mr incredible when he was his secret identity bob parr during his day job at the insurance place in the movie "the incredibles"). the way i saw it was, if someone is calling their health insurance company then either they themselves or someone they love has been sick or injured. they are going through enough without having to deal with money and bills. so i always did all i could to help them. we had a $500 cap per client that we, as customer service specialists, could issue to clients without a signature from higher up. so, if i could help someone, even with only $500, i did. anywhom... my deal right now is (primarily) docs and i are still trying to figure out what the hell is going on with me and why am i in sooo much pain! yes i realize i owe medical people money, but i'm on medical leave only getting medical pay and I AM paying my copays and percentage insurance at every visit and paying for my prescriptions and gas money driving back and forth ( i'm still not driving but i give gas money to the people that drive me ) keep in mind that i still have to eat and pay rent/mortgage and such... no, i cant pay your thousands of dollars er bills in the next 15 days. sorry. what they fuck do they expect?! gaaa!
-- clip 0:40 - 1:55 --
exhale. sorry about that, folks. this stuff just drives me insane. i am 1,000% grateful that i have a job with benefits and medical leave and medical pay and family and friends that help me when i need it... i am honestly grateful. but i am also worried that docs are still trying to figure out what is wrong and how to fix it and in the meantime my medical leave is almost exhausted but i am still not able to work and i worry about losing my good job and all it's benefits ... oh and i have suffered from depression most of my life, so that's a huge help throughout this ordeal. i am not looking for sympathy or pity or anything like that... sometimes it just helps to vent. even if no one ever reads what i write, it does help to get it out. the only thing about writing that does not help is the fact that my hand hates me for all the typing / writing so i have to do it in spurts.
okay... i have been writing this in between medical bill phone calls. these people are driving me insane. i think i have made/taken my last medical phone call for today. *i need to fax some stuff which means i have to get out of my jammies and out of the house and be seen in public. * blargh. additionally, my cell phone has been acting up. it powers off just whenever it feels like it. i havent been able to notice a pattern. battery is fully charged. anywhom, so i need to get that in to be diagnosed. yay, dealing with more customer service people. phooey. so, if you have sent me texts or called without answer and left voicemails, i am sorry. half the time i pick up my phone and notice it has powered off so i dont know what calls i might be missing that dont leave messages. i did the software upgrade on it this morning, but it doesnt seem to be helping.
*** nice, roommie just got home and said that while he is out running his errands he will fax my junk for me! yay! and i am not sooo concerned about my phone at this moment, so i suppose i will stay in and continue to rest today. that is a relief. ***
this is the current version (remainder) of my medical schedule as i know it to be, right now:
wednesday september 16th i see the pain psychologist for about an hour, then after him i see the occupational therapist who should be giving me a TENS unit i will take home with me.
thursday september 17th i see the pain doc for an "occipital nerve" block injection ( direct injection to the nerve in the lower back right side of my noggin ) as well as "trigger point injections" for the pain spots. yay.
tuesday september 29th i again see the pain psychologist
thursday october 15th lidocaine iv infusion #2
they told me that each time i go in for one specific treatment they will then set up my next appointment for the same treatment to be repeated. so i'll keep you posted as more appointments are made. hopefully they and i know more soon... the not knowing is sometimes the hardest part.
thanks again to all of you for your continued support and understanding.
i love you all oodles and bunches.
be well.
~angela
yesterday was my first round with the lidocaine iv infusion. i think, initially, i was more worried about the procedure than i was about the after-effects. the medical office requires that you have a driver to take you home after the procedure. my sister took me for this appointment. thanks sis, i love you! i got checked in at the front desk and then a nurse came and got me. she took me to this little room with an over-sized medical recliner, a heart monitor, iv stand, and a waiting chair. she had me sign some papers and she explained to me how it works. she was super nice and kinda relaxed me when we started talking about our pets. anywhom, she hooked me up to the heart monitor and explained that once she got the infusion going she would start at the lowest setting and gradually increase the levels depending on how i was doing with it. she got my iv started (she was good! i barely felt a thing!) and set me on the first level. she said that basically i would start to feel like i had one tooo many margaritas. (which is why you need a driver) she sat and talked with me for a few more minutes and since i was doing fine she kicked it up a notch and left me for a bit. the receptionist came back and wanted to know if my sister could sit with me. i said yes, of course. Heather came back and said that she was going to walk around the mall but it was closed that early in the morning. so she sat with me and we chatted. i could tell i was feeling more and more drunk and i kinda had to concentrate on not laughing most of the time. nurse kept checking on me and kicking it up to the next notch. i was really having to focus on talking with Heather... but it was nice to spend some time with her. i love my sister very very much.
eventually the nurse said "now you're at full blast!" yay! i could certainly tell! it was so weird. i mean, i've been drunk before, but i havent drank in a couple of years and just sitting there with the drunk feeling coming over me was odd. she left me at full blast for a while then came in to disconnect me. she said i did well and that the front desk would set me up with another infusion 4 weeks from now. earlier, the nurse had explained to me that the people with the best results after this treatment usually are the ones that go home and do nothing but rest. she said no mowing the lawn or doing laundry or anything like that. she also said that they need me to keep a journal of how i feel from now until my next infusion. she said that i wont feel better right away. she said it will be slowly noticed things... like... i'll notice while standing in line at the bank that it doesnt hurt so much to stand there, or it doesnt take as much out of me to vacuum, or i can wash my hair, tie my shoes, or hold the phone to my ear for longer without so much pain in my hand and arm... and a list of other examples. she said they need me to pay attention to all those sorts of things and journal them.
i checked out and they set me up for another infusion on thursday october 15th. we got out of there and sis took me home. my roommie, Michael, had stayed home to watch my doggies for me. KaiYin specifically since she is only a few days out of her 6th cancer surgery. i got home and c r a s h e d! i didnt just feel drunk at that point... i felt hungover. i felt miserable. my entire body was angry. i fell over on the couch and was attempting to explain to my roommie how it went and i think i just passed out. he let me sleep. i woke up a few hours later, still "hungover". i asked Michael if he could maybe fix some dinner while i showered. he did. my shower wasnt really as relieving as i had hoped. but dinner was yummy! we ate and watched a movie, then i cuddled my doggies on my couch while Michael played online and read his book on his couch. i guess i must have passed out again because i didnt wake until this morning. suppose i needed it though.
and how lovely that i get to wake to dealing with medical bill collectors. really?! the bills they are calling me about are from appointments on 05.11.09 and 06.11.09 ... may and june... it's only september! it's been like 3 months and i am s t i l l on medical leave for the same reason i was then and they are already threatening me with collections?! they say i have 15 days to pay a few thousand dollars IN FULL or they will send me to collections. really?! you people are ass holes. and i realize some people "are just doing their jobs" but you know what? you dont have to be condescending, heartless rocks during our conversation. when i worked for blue cross and blue shield in north carolina i actually got "talked to" by my team leader many times about the fact that i was "helping clients tooo much" (kinda like mr incredible when he was his secret identity bob parr during his day job at the insurance place in the movie "the incredibles"). the way i saw it was, if someone is calling their health insurance company then either they themselves or someone they love has been sick or injured. they are going through enough without having to deal with money and bills. so i always did all i could to help them. we had a $500 cap per client that we, as customer service specialists, could issue to clients without a signature from higher up. so, if i could help someone, even with only $500, i did. anywhom... my deal right now is (primarily) docs and i are still trying to figure out what the hell is going on with me and why am i in sooo much pain! yes i realize i owe medical people money, but i'm on medical leave only getting medical pay and I AM paying my copays and percentage insurance at every visit and paying for my prescriptions and gas money driving back and forth ( i'm still not driving but i give gas money to the people that drive me ) keep in mind that i still have to eat and pay rent/mortgage and such... no, i cant pay your thousands of dollars er bills in the next 15 days. sorry. what they fuck do they expect?! gaaa!
-- clip 0:40 - 1:55 --
exhale. sorry about that, folks. this stuff just drives me insane. i am 1,000% grateful that i have a job with benefits and medical leave and medical pay and family and friends that help me when i need it... i am honestly grateful. but i am also worried that docs are still trying to figure out what is wrong and how to fix it and in the meantime my medical leave is almost exhausted but i am still not able to work and i worry about losing my good job and all it's benefits ... oh and i have suffered from depression most of my life, so that's a huge help throughout this ordeal. i am not looking for sympathy or pity or anything like that... sometimes it just helps to vent. even if no one ever reads what i write, it does help to get it out. the only thing about writing that does not help is the fact that my hand hates me for all the typing / writing so i have to do it in spurts.
okay... i have been writing this in between medical bill phone calls. these people are driving me insane. i think i have made/taken my last medical phone call for today. *
*** nice, roommie just got home and said that while he is out running his errands he will fax my junk for me! yay! and i am not sooo concerned about my phone at this moment, so i suppose i will stay in and continue to rest today. that is a relief. ***
this is the current version (remainder) of my medical schedule as i know it to be, right now:
wednesday september 16th i see the pain psychologist for about an hour, then after him i see the occupational therapist who should be giving me a TENS unit i will take home with me.
thursday september 17th i see the pain doc for an "occipital nerve" block injection ( direct injection to the nerve in the lower back right side of my noggin ) as well as "trigger point injections" for the pain spots. yay.
tuesday september 29th i again see the pain psychologist
thursday october 15th lidocaine iv infusion #2
they told me that each time i go in for one specific treatment they will then set up my next appointment for the same treatment to be repeated. so i'll keep you posted as more appointments are made. hopefully they and i know more soon... the not knowing is sometimes the hardest part.
thanks again to all of you for your continued support and understanding.
i love you all oodles and bunches.
be well.
~angela
08 September 2009
angela medical update with some significance
well, i do have a bunch to tell about my LA trip last week... but right now i have medical stuff weighing on my mind, and folks asking about it, so i'll get that out of the way now. i had my first appointment (today) at the Kalamazoo Anesthesiology Pain Clinic. i was very happy with the docs i met and interacted with. first they sent me in to the pain psychologist, he does just what it sounds like, he helps you emotionally handle the pain you are going through and what it is doing to your life. then i saw one of the pain specialists. he talked with me forever in addition to doing a basic pain exam. it was nice not to feel rushed out of the office! they dont believe all of my pain is related. they think there may be 2 or 3 different things going on, but they are going on all at once, so some docs are getting confused trying to find one diagnosis that covers everything. so what this doc is going to do is, try to relieve at least 1 portion of the pain ( i think just which ever one subsides with treatment ) and we hope that if one of the pains will go away, it will help to figure out what the other pains are and how to diagnose and treat the leftover pains. does that make sense to you? it makes sense to me... but i was also in the office for about 2 hours talking this all through! so, this is what my schedule looks like:
(today) tuesday 8th for pain clinic consultation
(tomorrow) wednesday 9th drop of KaiYin to the vet surgeon in ft.wayne for her 6th cancer surgery
thursday 10th if all goes well, bring KaiYin home from post-op
friday 11th appointment has been rescheduled for monday 14th
friday 11th i have my first appointment for "lidocaine infusion" iv. i'll be learning more about this and i guess it's not as scary as it sounds. ( but i'm still kinda freaked about it )
monday 14th i have my first appointment for "lidocaine infusion" iv. i'll be learning more about this and i guess it's not as scary as it sounds. ( but i'm still kinda freaked about it )
wednesday 16th i see the pain psychologist for about an hour, then after him i see the occupational therapist who should be giving me a TENS unit.
thursday 17th i see the pain doc for an "occipital nerve" block injection ( direct injection to the nerve in the lower back right side of my noggin ) as well as "trigger point injections" for the pain spots. yay.
tuesday 29th i again see the pain psychologist
meanwhile, pain doc prescribed me with "Elavil" to help me sleep. but pharm is closed so i wont have that until tomorrow. for the appointments when i am getting iv and injections, they gave me paperwork with strict rules that i must have a driver or my appointment will be canceled. i havent been driving anywhom, but i especially wont take any chances with all of this going on.
so, this is all i know. they dont have a diagnosis for me since they dont know what pains are related to each other or what caused them. i could go on and on about all of the things i've been going through since what seems to have been the onset in april, as well as new issues that have arisen, but i wont bore you all with the details. i'll try to keep this simple until we know more. pain doc mentioned that if all else fails, then we might discuss the Cleveland Clinic or Mayo. but that ( i believe ) is going to be a last resort kinda thing.
thanks to all of you for the well wishes, love and support you have given me! i really appreciate it! even if i dont write updates or return calls or emails right away, please know that i am thankful for all of you!
take care of you and yours.
be well.
~angela
( i'll try to post an LA update in the next few days! )
*updated* 10 sept 09 at 128p
my appointment for tomorrow (friday 11th) has been rescheduled for monday 14th. also, last night was my first night taking the Elavil for sleep. yeah, it didnt really work. i took it about midnight and was wide awake at 230a. blargh. i was in and out of sleep all night/morning. it is only 10mg and doc said i can take more than 1 if i think i need to... for those of you that know me, i despise taking meds. especially for things that i think should just be natural. i dont have problems going to sleep... i have issues staying asleep through the pain. so, that is my update for now. thanks again for all the well wishes. i'll keep updating as i know more. *hugs*
(today) tuesday 8th for pain clinic consultation
(tomorrow) wednesday 9th drop of KaiYin to the vet surgeon in ft.wayne for her 6th cancer surgery
thursday 10th if all goes well, bring KaiYin home from post-op
friday 11th appointment has been rescheduled for monday 14th
monday 14th i have my first appointment for "lidocaine infusion" iv. i'll be learning more about this and i guess it's not as scary as it sounds. ( but i'm still kinda freaked about it )
wednesday 16th i see the pain psychologist for about an hour, then after him i see the occupational therapist who should be giving me a TENS unit.
thursday 17th i see the pain doc for an "occipital nerve" block injection ( direct injection to the nerve in the lower back right side of my noggin ) as well as "trigger point injections" for the pain spots. yay.
tuesday 29th i again see the pain psychologist
meanwhile, pain doc prescribed me with "Elavil" to help me sleep. but pharm is closed so i wont have that until tomorrow. for the appointments when i am getting iv and injections, they gave me paperwork with strict rules that i must have a driver or my appointment will be canceled. i havent been driving anywhom, but i especially wont take any chances with all of this going on.
so, this is all i know. they dont have a diagnosis for me since they dont know what pains are related to each other or what caused them. i could go on and on about all of the things i've been going through since what seems to have been the onset in april, as well as new issues that have arisen, but i wont bore you all with the details. i'll try to keep this simple until we know more. pain doc mentioned that if all else fails, then we might discuss the Cleveland Clinic or Mayo. but that ( i believe ) is going to be a last resort kinda thing.
thanks to all of you for the well wishes, love and support you have given me! i really appreciate it! even if i dont write updates or return calls or emails right away, please know that i am thankful for all of you!
take care of you and yours.
be well.
~angela
( i'll try to post an LA update in the next few days! )
*updated* 10 sept 09 at 128p
my appointment for tomorrow (friday 11th) has been rescheduled for monday 14th. also, last night was my first night taking the Elavil for sleep. yeah, it didnt really work. i took it about midnight and was wide awake at 230a. blargh. i was in and out of sleep all night/morning. it is only 10mg and doc said i can take more than 1 if i think i need to... for those of you that know me, i despise taking meds. especially for things that i think should just be natural. i dont have problems going to sleep... i have issues staying asleep through the pain. so, that is my update for now. thanks again for all the well wishes. i'll keep updating as i know more. *hugs*
11 August 2009
update, for now...
hey there punks and kittens~~
when i started this page i had the best of intentions of posting all the time. well, life happens, and i havent been able to post as often as i wanted. i've got quite a bit going on, so i'll just give a quick outline... in no particular order...
KaiYin had another biopsy on the mass i found about 6 months ago and this time they did find cancer cells in the mass. she is scheduled for surgery september 9th. 9-9-09 hopefully will be lucky for all of us. she is my baby girl and i dont know what i would ever do without her. this will be surgery #6 for her. i know some people think i am crazy. i've spent (very roughly) about $10,000 on all of her surgeries combine. "she's just a dog" is not part of my being. she has not yet been physically sick or aware that she is sick... so the fact that i can find these masses and catch them when they are small and they can be removed, well, i'll do all i can for her. thanks to those of you that have sent well wishes to us. i'll keep you posted as we find out more.
the garage sale we had this past weekend at ma's house went okay. friday was a very decent day. saturday was nothing but rain and trying to get the tarps to stay up against the wind and rain. i think we actually had more traffic the day of the rain... but we had a lot of stuff covered with tarps so there werent as many sales. that sucked. sunday cleared up to be a hot but beautiful day. however, we barely had any customers. we had 4 families in the sale and i think overall we made about $1500. i only made about $115. but it's more than i started with... and i finally got rid of my old entertainment center. that was a big relief. still have a bunch of garage sale leftovers. if you or someone you know might be interested, get with me and we'll work something out.
my medical stuff is still a nightmare. i have been on medical leave for almost 13 weeks now. in the first 52 days they gave me 12 different prescriptions. i despise taking pills... and luckily, i am not on them right now. but that is only because they cant figure anything out so they dont know what to do with me. most of you know that i have been struggling a great deal with my neurologist to file my medical leave paperwork in a timely manner. he is terrible. i have had my benefits and pay suspended multiple times because he cant seem to fill out and send in paperwork / medical records when they are due. now, i know some people think, "he's a neurologist and you are not his only patient." i know this. i also know that he told me i did not need an appointment to get my bloodwork results, he said call back in 4 days and we could discuss it over the phone, and that he did in fact have the results on the 4th day, but because he still had not signed them for 19 days ( ! ) none of his nurses could give me the results. it took me driving over an hour one-way to his hospital and speaking with his office manager (after i made 29 calls in 19 days to his office) before i finally got my results. then they said his schedule is booked out by 2 months and i cant see him again until august 13th. what the fuck?! keep in mind, he has not started any treatments for me. so it's not like "hey, lets try this and see you back in 2 months" nothing. his assistant said "well, he doesnt have you on my 'urgent' list so lets just assume that no news is good news." no, lets not. i know that i am in constant pain and that i have been to multiple specialists for multiple tests and that nothing has been figured out. my employer doesnt want to hear that i am off simply to wait for my next appointment. they (and i) want me to be off because i am undergoing treatment to get better and well enough to return to my everyday life and work. i have requested a new / different neurologist but i have been told i have to wait to complete this august 13th appointment with current neuro before i can get a different one. i have been in a lot of pain and it gets really VERY intolerable sometimes so i finally just went back to my primary care and asked if they could suggest anything else. she is referring me to the spinal institute. i've been waiting about 2 weeks to get in there.
for those of you that dont know what has been going on, here are my "issues":
it started with sudden onset pain in my left arm. they thought maybe a blood clot but never found one.
severe pain (not headache) in the lower, back, right-hand side of my head.
pain throughout my arms, shoulders, neck and lower/back of my head.
(including frequent numbness)
tremors in my arms and legs
weakness / pain in my arms and hands (all the time)
loss of balance.
muffled hearing - mostly in my right ear (kinda like i am underwater).
vision is fine, i passed my vision test 20/20 but i am seeing little floating "spark-like" things and my right eye gets painful quite often.
loss of focus. i cant really concentrate when someone is talking for too long or if i am reading or writing for too long. (so i'm not driving unless necessary)
slight memory loss.
my blood levels are elevated and they are not sure why. i've had the same tests run 4 times.
i've had vascular and arterial ultrasounds in my arms and chest area, brain and spinal MRIs, surface and needle EMGs, and tons of bloodwork and tons of meds.
anywhom... my next neuro appointment is this thursday august 13th (also my twin's and my birthday). i'm trying to think positive thoughts that something good will happen. i'll keep you updated.
what else?
i am putting my house up for sale. for real, hopefully soon. i have had it for sale by owner, but no luck. i think i'm gonna need a realtor. currently my sister and her kids are living there while she gets on her feet from her divorce this year. but my place was only a temporary fix for them, so she is looking for something more permanent and i am looking to get out from under the mortgage. really, i am willing to sell it for what i owe, just to get out of it. hope something happens soon.
when my hand / arm is being cooperative, i am trying to work on etsy projects as much as possible. i have not posted anything for sale just yet. i am trying to get a handful of pieces in stock in the case i might actually get some orders! i need to make money somehow. medical pay is obviously less than my regular pay, but i have not been getting paid on a regular basis since my neurologist has not been filing the paperwork properly. yeah, so, i'll post my storefront soon ~~ but in the meantime, you can learn more what it's about at www.etsy.com
i've been having a pretty torrid affair with twitter. it's just an easy site to post thoughts and updates in real-time without the headache of all the profile junk (like myspace and facebook). this is me http://twitter.com/imaginebttrfly if you want to keep track. there is also a link on my sidebar, on this page, that shows my most recent 5 updates. if you get or have a twitter account, send me your link!
my baby beast (jeep) is still parked. not only because i am not really driving right now... but also because she is sickly and i dont know what is wrong. if anyone knows anything about automotive repairs - jeeps in particular - please let me know! my friend matt did some work on her a few months ago after the deer jumped out in front of me. it had been fine, but the last time i drove it, it went crazy and i dont know what is wrong.
well, i'm gonna post this and get on with my day. it's taken me a few hours to put this all together since my hand doenst have much stamina right now. (so much for a "quick outline", huh?!)
i miss you and love you all!
be well.
~angela
when i started this page i had the best of intentions of posting all the time. well, life happens, and i havent been able to post as often as i wanted. i've got quite a bit going on, so i'll just give a quick outline... in no particular order...
KaiYin had another biopsy on the mass i found about 6 months ago and this time they did find cancer cells in the mass. she is scheduled for surgery september 9th. 9-9-09 hopefully will be lucky for all of us. she is my baby girl and i dont know what i would ever do without her. this will be surgery #6 for her. i know some people think i am crazy. i've spent (very roughly) about $10,000 on all of her surgeries combine. "she's just a dog" is not part of my being. she has not yet been physically sick or aware that she is sick... so the fact that i can find these masses and catch them when they are small and they can be removed, well, i'll do all i can for her. thanks to those of you that have sent well wishes to us. i'll keep you posted as we find out more.
the garage sale we had this past weekend at ma's house went okay. friday was a very decent day. saturday was nothing but rain and trying to get the tarps to stay up against the wind and rain. i think we actually had more traffic the day of the rain... but we had a lot of stuff covered with tarps so there werent as many sales. that sucked. sunday cleared up to be a hot but beautiful day. however, we barely had any customers. we had 4 families in the sale and i think overall we made about $1500. i only made about $115. but it's more than i started with... and i finally got rid of my old entertainment center. that was a big relief. still have a bunch of garage sale leftovers. if you or someone you know might be interested, get with me and we'll work something out.
my medical stuff is still a nightmare. i have been on medical leave for almost 13 weeks now. in the first 52 days they gave me 12 different prescriptions. i despise taking pills... and luckily, i am not on them right now. but that is only because they cant figure anything out so they dont know what to do with me. most of you know that i have been struggling a great deal with my neurologist to file my medical leave paperwork in a timely manner. he is terrible. i have had my benefits and pay suspended multiple times because he cant seem to fill out and send in paperwork / medical records when they are due. now, i know some people think, "he's a neurologist and you are not his only patient." i know this. i also know that he told me i did not need an appointment to get my bloodwork results, he said call back in 4 days and we could discuss it over the phone, and that he did in fact have the results on the 4th day, but because he still had not signed them for 19 days ( ! ) none of his nurses could give me the results. it took me driving over an hour one-way to his hospital and speaking with his office manager (after i made 29 calls in 19 days to his office) before i finally got my results. then they said his schedule is booked out by 2 months and i cant see him again until august 13th. what the fuck?! keep in mind, he has not started any treatments for me. so it's not like "hey, lets try this and see you back in 2 months" nothing. his assistant said "well, he doesnt have you on my 'urgent' list so lets just assume that no news is good news." no, lets not. i know that i am in constant pain and that i have been to multiple specialists for multiple tests and that nothing has been figured out. my employer doesnt want to hear that i am off simply to wait for my next appointment. they (and i) want me to be off because i am undergoing treatment to get better and well enough to return to my everyday life and work. i have requested a new / different neurologist but i have been told i have to wait to complete this august 13th appointment with current neuro before i can get a different one. i have been in a lot of pain and it gets really VERY intolerable sometimes so i finally just went back to my primary care and asked if they could suggest anything else. she is referring me to the spinal institute. i've been waiting about 2 weeks to get in there.
for those of you that dont know what has been going on, here are my "issues":
it started with sudden onset pain in my left arm. they thought maybe a blood clot but never found one.
severe pain (not headache) in the lower, back, right-hand side of my head.
pain throughout my arms, shoulders, neck and lower/back of my head.
(including frequent numbness)
tremors in my arms and legs
weakness / pain in my arms and hands (all the time)
loss of balance.
muffled hearing - mostly in my right ear (kinda like i am underwater).
vision is fine, i passed my vision test 20/20 but i am seeing little floating "spark-like" things and my right eye gets painful quite often.
loss of focus. i cant really concentrate when someone is talking for too long or if i am reading or writing for too long. (so i'm not driving unless necessary)
slight memory loss.
my blood levels are elevated and they are not sure why. i've had the same tests run 4 times.
i've had vascular and arterial ultrasounds in my arms and chest area, brain and spinal MRIs, surface and needle EMGs, and tons of bloodwork and tons of meds.
anywhom... my next neuro appointment is this thursday august 13th (also my twin's and my birthday). i'm trying to think positive thoughts that something good will happen. i'll keep you updated.
what else?
i am putting my house up for sale. for real, hopefully soon. i have had it for sale by owner, but no luck. i think i'm gonna need a realtor. currently my sister and her kids are living there while she gets on her feet from her divorce this year. but my place was only a temporary fix for them, so she is looking for something more permanent and i am looking to get out from under the mortgage. really, i am willing to sell it for what i owe, just to get out of it. hope something happens soon.
when my hand / arm is being cooperative, i am trying to work on etsy projects as much as possible. i have not posted anything for sale just yet. i am trying to get a handful of pieces in stock in the case i might actually get some orders! i need to make money somehow. medical pay is obviously less than my regular pay, but i have not been getting paid on a regular basis since my neurologist has not been filing the paperwork properly. yeah, so, i'll post my storefront soon ~~ but in the meantime, you can learn more what it's about at www.etsy.com
i've been having a pretty torrid affair with twitter. it's just an easy site to post thoughts and updates in real-time without the headache of all the profile junk (like myspace and facebook). this is me http://twitter.com/imaginebttrfly if you want to keep track. there is also a link on my sidebar, on this page, that shows my most recent 5 updates. if you get or have a twitter account, send me your link!
my baby beast (jeep) is still parked. not only because i am not really driving right now... but also because she is sickly and i dont know what is wrong. if anyone knows anything about automotive repairs - jeeps in particular - please let me know! my friend matt did some work on her a few months ago after the deer jumped out in front of me. it had been fine, but the last time i drove it, it went crazy and i dont know what is wrong.
well, i'm gonna post this and get on with my day. it's taken me a few hours to put this all together since my hand doenst have much stamina right now. (so much for a "quick outline", huh?!)
i miss you and love you all!
be well.
~angela
14 July 2009
small medical update
*warning... this kinda goes off on a bit of a tangent... just so ya know...
**also, just so you know, all of my posts on here wont be depressing... i've just been going through a lot lately. thanks for understanding.
in 12 hours i will be on my way to yet another new specialist for yet another series of tests. this dr is an immunologist. and go figure, my neurologist that ordered these tests is out of the country for 2 full weeks. this neuro is really getting on my nerves! his assistant JUST called to tell me this 2 days before my appointment that he would be out of the country. lovely, huh? i feel like i am being pushed aside and ignored. neuro's assistant said, "well, dr doesnt have you on my urgent list. so lets just assume no news is good news." FUCK NO! I AM IN PAIN! i have put in a request for a new / different neuro but i doubt the hospital will do anything about it. it's been 84 days since this painful onset. i am not at all afraid to speak my mind... especially when it comes to my health and well-being. i'm not afraid of doctors. i will say what needs to be said because i want to make sure i am being treated right. i know i can be straight-forward... but that is what i want from a doctor, as well. i'm straight-forward with you, you better be straight with me. if you cant figure me out and treat / fix me... admit it as soon as you have doubts so i can find someone that is capable and willing to take care of me. my only medical fear is the unknown.
it took me about 9 years, countless tests and doctors, 3 different state medical boards, petitions, and 3 exploratory surgeries, before i finally found a dr that believed my "female pains" were not "just cramps" and gave me a hysterectomy. fuck, it got to the point i was taking a $600 injection every 3 weeks that was a medication for men with prostate cancer! ($600 out of my pocket, after insurance, per injection!)
my current neuro told me that it would take 4 days to get my previous bloodwork back. i specifically asked him if i would need to make and appointment to get the results (i have a witness). dr said, no. told me to call him on the 4th day and we could discuss the next step over the phone. when i called on the 4th day, his assistant told me that she gave dr my results but he had to sign-off on them before i could get them. well, i called the office 29 times in 19 days before i finally broke down, drove an hour to the neuro office, asked for the office manager, and finally got my results. that is fucking ridiculous! in the meantime, i was under no treatment. i still am under no treatment! so while i am waiting for docs to get around to my case, i am still in pain and suffering. i am still not working. not driving unless absolutely necessary. no lifting. over-exertion... blah blah blah. yet i am STILL in pain. every single day. now, i am going to see this immunologist tomorrow for a 2 hour session of tests. it sounds like allergy testing, but the receptionist is kinda giving me the run-around about it. they said neuro wants immunologist to do an allergy workup since my blood levels have been on a steady incline. but they said "dont mix apples with oranges. this is no necessarily what is causing the pain and weakness in your limbs nor does it probably have anything to do with the nerve issues and pain in your head. neurologist just wants to run more tests before he starts treatment for the physical pains." really? that's great. take your time why dontchya. i know they are trying to sound all thorough and such... but i'm not falling for it. i think it's laziness. i feel like it is. it took me making a 2 hour round-trip drive and asking for the office manager after almost 30 unreturned phone calls before i got MY test results that i was told were in fact complete at the time of my first call. gaaa! oh.. and get this! they told me that if i have any "specific or acute pains that cant be tolerated, go directly to the er." really?! because i went to your er 3 times in 2 weeks and they keep saying they dont know what it is and i should prolly consult my family dr to see a specialist. FUCK! in the meantime, i am running out of medical leave at work, i'm sure my boss is running low on patience with my time off, and i am flat broke. i mean, i'm getting my medical pay (not on a regular basis) but it doesnt much matter when i'm racking up the medical bills. ya know? and to top it all off, i get these tests run tomorrow, july 15th... but i am told that neurologist isn't going to see me until august 13th!!! what the fuck?!?! *side note, august 13th is my birthday. and what a day it'll be, i'm sure.
okay, i'm going to end this rant for now. sorry if i got out of control here. i just get so flippin' frustrated with the healthcare system. i used to work for blue cross and blue shield of north carolina and i made sure i was pleasant and helpful in every way possible. i mean, think about it, if someone is calling a dr or health insurance place, it is most likely because they or someone close to them is not well. be compassionate. have a heart. be human. how would you want your family member(s) to be treated? how would YOU want to be treated? be nice to people. if you dont like working with people, then dont get in a profession where you need to be a people-person. simple as that. shit, i used to say that when i worked in a damn restaurant. "if you dont want to serve people, dont be a server." i would yell it in the back of the kitchen i managed, when i saw servers standing around.
for serious, this rant is to be continued. i will try to keep it tame. i'm just getting frustrated.
in the meantime...
thanks SOOO much for all of you that have sent well wishes, love, prayers, thoughts, chants, all of it my way!
i love you all oodles and bunches.
take care of you and yours.
be well.
~angela
**also, just so you know, all of my posts on here wont be depressing... i've just been going through a lot lately. thanks for understanding.
in 12 hours i will be on my way to yet another new specialist for yet another series of tests. this dr is an immunologist. and go figure, my neurologist that ordered these tests is out of the country for 2 full weeks. this neuro is really getting on my nerves! his assistant JUST called to tell me this 2 days before my appointment that he would be out of the country. lovely, huh? i feel like i am being pushed aside and ignored. neuro's assistant said, "well, dr doesnt have you on my urgent list. so lets just assume no news is good news." FUCK NO! I AM IN PAIN! i have put in a request for a new / different neuro but i doubt the hospital will do anything about it. it's been 84 days since this painful onset. i am not at all afraid to speak my mind... especially when it comes to my health and well-being. i'm not afraid of doctors. i will say what needs to be said because i want to make sure i am being treated right. i know i can be straight-forward... but that is what i want from a doctor, as well. i'm straight-forward with you, you better be straight with me. if you cant figure me out and treat / fix me... admit it as soon as you have doubts so i can find someone that is capable and willing to take care of me. my only medical fear is the unknown.
it took me about 9 years, countless tests and doctors, 3 different state medical boards, petitions, and 3 exploratory surgeries, before i finally found a dr that believed my "female pains" were not "just cramps" and gave me a hysterectomy. fuck, it got to the point i was taking a $600 injection every 3 weeks that was a medication for men with prostate cancer! ($600 out of my pocket, after insurance, per injection!)
my current neuro told me that it would take 4 days to get my previous bloodwork back. i specifically asked him if i would need to make and appointment to get the results (i have a witness). dr said, no. told me to call him on the 4th day and we could discuss the next step over the phone. when i called on the 4th day, his assistant told me that she gave dr my results but he had to sign-off on them before i could get them. well, i called the office 29 times in 19 days before i finally broke down, drove an hour to the neuro office, asked for the office manager, and finally got my results. that is fucking ridiculous! in the meantime, i was under no treatment. i still am under no treatment! so while i am waiting for docs to get around to my case, i am still in pain and suffering. i am still not working. not driving unless absolutely necessary. no lifting. over-exertion... blah blah blah. yet i am STILL in pain. every single day. now, i am going to see this immunologist tomorrow for a 2 hour session of tests. it sounds like allergy testing, but the receptionist is kinda giving me the run-around about it. they said neuro wants immunologist to do an allergy workup since my blood levels have been on a steady incline. but they said "dont mix apples with oranges. this is no necessarily what is causing the pain and weakness in your limbs nor does it probably have anything to do with the nerve issues and pain in your head. neurologist just wants to run more tests before he starts treatment for the physical pains." really? that's great. take your time why dontchya. i know they are trying to sound all thorough and such... but i'm not falling for it. i think it's laziness. i feel like it is. it took me making a 2 hour round-trip drive and asking for the office manager after almost 30 unreturned phone calls before i got MY test results that i was told were in fact complete at the time of my first call. gaaa! oh.. and get this! they told me that if i have any "specific or acute pains that cant be tolerated, go directly to the er." really?! because i went to your er 3 times in 2 weeks and they keep saying they dont know what it is and i should prolly consult my family dr to see a specialist. FUCK! in the meantime, i am running out of medical leave at work, i'm sure my boss is running low on patience with my time off, and i am flat broke. i mean, i'm getting my medical pay (not on a regular basis) but it doesnt much matter when i'm racking up the medical bills. ya know? and to top it all off, i get these tests run tomorrow, july 15th... but i am told that neurologist isn't going to see me until august 13th!!! what the fuck?!?! *side note, august 13th is my birthday. and what a day it'll be, i'm sure.
okay, i'm going to end this rant for now. sorry if i got out of control here. i just get so flippin' frustrated with the healthcare system. i used to work for blue cross and blue shield of north carolina and i made sure i was pleasant and helpful in every way possible. i mean, think about it, if someone is calling a dr or health insurance place, it is most likely because they or someone close to them is not well. be compassionate. have a heart. be human. how would you want your family member(s) to be treated? how would YOU want to be treated? be nice to people. if you dont like working with people, then dont get in a profession where you need to be a people-person. simple as that. shit, i used to say that when i worked in a damn restaurant. "if you dont want to serve people, dont be a server." i would yell it in the back of the kitchen i managed, when i saw servers standing around.
for serious, this rant is to be continued. i will try to keep it tame. i'm just getting frustrated.
in the meantime...
thanks SOOO much for all of you that have sent well wishes, love, prayers, thoughts, chants, all of it my way!
i love you all oodles and bunches.
take care of you and yours.
be well.
~angela
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