The last few weeks have been interesting to say the least...I had no idea that medications could be responsible for so many dizzy spells, falls with the scrapes and bruises to go with it, and just plain old clumsiness. I am dropping everything. I've wrecked or broken so much stuff it isn't funny, including 2 keyboards for my computer from spilling coffee (fortunately, we had extra keyboards in the basement or I wouldn't be writing this).
No real news on much going on. The pain doctor changed my meds 2 days ago, so hopefully the falls will stop, and I see him again on the 30th, but I can already tell with only 2 days, since he is weaning me off one of the medications, the abdominal pain is increasing again.. I am seeing my internal medicine doctor on the 26th, since the edema is getting worse. At points it is swelling up over my knees and making walking extremely painful or impossible. Besides I have this weird double vision thing going with my left eye.
After lots of phone calls, I finally heard from social security only to be told I had a doctor's appointment (I ended up talking to the examiner's supervisor, since she never mailed me the info. and I would have missed it). Anyways, I had to go to a special office for them, new doctor...turned out to be a psychiatrist and they wanted a mental health exam. I wasn't truly surprised by the diagnosis, but it is more real when someone actually says it...so I am now officially diagnosed with chronic depression and a generalized anxiety disorder. Not sure what happens next with that, since they don't prescribe meds or set up doctor appts. they just needed the information to determine my eligibility for SSD..my doctor will have to decide what will happen next. So at this point, hopefully with these 2 diagnosis, plus the diagnosis for the abdominal nerve and muscle damage that is the cause of the constant pain, and since I am still losing weight---down to 125 now, which looks pretty anorexic if you ask me, they'll approve me. They won't even look at any of the other stuff, since the doctor's don't know why or what's causing it, hence no diagnosis as usual. Gotta wait and see.
Will check in again when I know more. Hope your all enjoying your summer.
Its been HOT, HOT, HOT, here in Michigan.
Thursday, July 19, 2012
Wednesday, July 4, 2012
No Celebrating for Me this 4th of July!
Yes, I know, its been a while since I've checked in...but in all fairness, its very frustrating when there isn't much to report and I don't have very much to tell you.
Here's a basic overview for those of you that are new to my blog and don't want to read all the posts, or just a refresher for those of you returning. There are so many people that have similar, if not exact symptoms as myself and if I can assist in helping one person find a treatment that works, maybe it will help others too. I've been writing this in hopes that something I've been through, a test, medication or anything may allow you to talk to your doctor about it and see if it can help you or someone you know that is going through this.
First off, I had bariatric surgery in 2008. Although I think this surgery contributed to my problems, I'm not certain it is the cause, since the true symptoms didn't start until later after my gall bladder was removed. In spring of 2009, I had started getting sick after ever meal and when I say sick, I mean nausea, vomiting, and extreme abdominal pain. After avoiding eating and pushing it off as long as I could, since I was in fear of losing my job and health insurance if I needed to go on medical leave, I finally ended up in the emergency room in such severe pain, they determined my gall bladder needed to be removed. The same doctor that performed my bariatric surgery removed my gall bladder and was convinced this would take care of it...but it didn't, it was much worse and till this day I still can't describe how bad it feels except to say it would rate a 12 on the 1-10 scale, and as of today the doctors have still not found a medicine to stop these episodes that leave me curled up in a ball, in tears until it finally subsides, which may be within an hour or may last as long as 3-4 hours. Up until this point, both surgeries were laproscopic, leaving me with minimal scaring. In October 2009, since all the tests were coming back negative, this same doctor decided to perform a open exploratory surgery (leaving me with a scar from just above my pelvic bone, all the way up above my belly button--no more options of a bikini for me). He stated he removed lots of adhesions (scar tissue) and that this should correct the problem. Unfortunately, during all this and being on medical leave for so long, I lost my job, along with my health insurance and because of our countries economic problems, my husband had already lost his job previously, leaving us with no income, except unemployment compensation and no health insurance. Plus my employer fought paying unemployment, which meant I had to appeal and did not receive any income until almost 3 months later. I even swallowed my pride and tried to get state assistance, only to be told that with our unemployment compensation we were making too much money...even though we were ready to lose our home and months behind on all of our bills and the only thing keeping us afloat was my 80+ year old father-in-laws generosity, which he couldn't afford either. The same painful episodes returned, along with a constant pain that was now 24 hours a day, which Tylenol couldn't even take the edge off of and I had no where to turn, since I had no health insurance, leaving me to just live through it, as it continued to slowly keep getting worse.
For 1 1/2 years I researched on the internet. I tried heating pads, ice packs, cutting out dairy, then gluton, wheat, then sugar...all to no avail. I tried multiple vitamin options and home remedies I found online, but none of these options helped either. By May of 2011, the pain was just unbearable and I finally called my original surgeon again and begged for help, since I still had no insurance. His office manager referred me to a different hospital's resident clinic, that he also worked out of and they approved me for assistance. For three months, I was passed from one resident to another who each put me through lots of tests, but were not authorized to prescribe pain medications, and all the tests continued to come back negative. The clinic was so disorganized, no one knew what the other was doing and my original surgeon, who was supposed to be supervising what these residents were doing had no idea of what was happening with my care. In order to keep a very long story shorter I'll skip some of this, but needless to say, he told me it was all in my head, I left his office, and he actually sent me a registered letter informing me, I was no longer his patient and they revoked my assistance and expected payment on the services rendered by the residents. My only saving grace at this point, was that my husband was finally able to find a job and we only had a short wait until the health insurance was being activated.
Once the insurance became active, I went to a gastroenterologist, who was finally the first doctor to give me something to try and at a minimum make me more comfortable, prescribing Vicodin for the pain and also added in Bentyl believing it might be muscle spasms from IBS, but he also referred me to another bariatric surgeon. At this point. the constant pain was still there, as well as I was still having the episodes of severe pain, but now I had constant nausea, was vomiting more than my meals and I was having lots of trouble swallowing. This surgeon did quite a few of the tests over again to verify what the residents from the other hospital did, then preceded to add in a few others, but still..everything came back negative. Baffled, he offered to do another exploratory (laproscopic this time) surgery to look around inside and see if he could find anything. Desperate, I agreed and the surgery was scheduled for right after Christmas. ***As a funny side note to all this, during all this time, every time I would lay down in severe pain, my cat would jump up on the bed, climb on top of me and use his front paws to push down and rub the area in a downward motion that hurt really bad, like he knew exactly what was causing the problems and wanted to help.*** The surgery went perfectly and he explained afterward, that he found and repaired the largest para-esophageal hernia he had ever seen. He could not explain why this never showed up on any of the tests, but my entire stomach and part of my intestine had worked their way up, pushed my esophagus to the side and lodged next to my diaphragm. (***think my cat knew something us humans didn't?) This was formed from a hiatal hernia, that was left undiagnosed and it was allowed to just keep getting bigger.
Unfortunately, even though the para-esophageal hernia was serious and was adding to some of the symptoms, it did not stop them all and I am still having problems. I'm not sure if this bariatric surgeon couldn't figure out what was going on, or was just too busy to try, but he passed me off to another doctor. So from February to April of 2012 I was passed off from one doctor to another, like a hot potato, as more tests come back negative and no one can solve the problem, but my symptoms are getting worse and the list of symptoms continues to keep getting longer.
Well, not much else to say for now. My pain specialist I see at the end of July and I'm not scheduled to see the Internal medicine doctor until September, but am supposed to call if anything gets worse. The insurance company is doing nothing more than delaying my own doctors from helping me. Nice huh What the hell are we paying $700 a month for?
Sorry to have to do this update:
I apologize to all readers that would like to do comments. Unfortunately, it was necessary to block comments because I have an immature and ignorant family member that has decided to use this site for fighting grounds between my immediate family and his/her own. They decided it was okay to name name's and bring up personal family issues rather than discuss them with us like an adult. This site is intended strictly for individuals with severe abdominal pains and issues that are similar to my own and that are looking for solutions that their doctors may have overlooked or hasn't considered. I won't allow the comments section on my blog to become their war grounds, as it is not what this site was intended for.
In the future, if you would like to make a comment, please send your comments to my email: ShariLynnGardner@gmail.com and I will post them all together under one heading, as long as they are regarding this topic. So please email me and look for your comments there. Thank you, I am sorry for any inconvenience this may cause.
Here's a basic overview for those of you that are new to my blog and don't want to read all the posts, or just a refresher for those of you returning. There are so many people that have similar, if not exact symptoms as myself and if I can assist in helping one person find a treatment that works, maybe it will help others too. I've been writing this in hopes that something I've been through, a test, medication or anything may allow you to talk to your doctor about it and see if it can help you or someone you know that is going through this.
First off, I had bariatric surgery in 2008. Although I think this surgery contributed to my problems, I'm not certain it is the cause, since the true symptoms didn't start until later after my gall bladder was removed. In spring of 2009, I had started getting sick after ever meal and when I say sick, I mean nausea, vomiting, and extreme abdominal pain. After avoiding eating and pushing it off as long as I could, since I was in fear of losing my job and health insurance if I needed to go on medical leave, I finally ended up in the emergency room in such severe pain, they determined my gall bladder needed to be removed. The same doctor that performed my bariatric surgery removed my gall bladder and was convinced this would take care of it...but it didn't, it was much worse and till this day I still can't describe how bad it feels except to say it would rate a 12 on the 1-10 scale, and as of today the doctors have still not found a medicine to stop these episodes that leave me curled up in a ball, in tears until it finally subsides, which may be within an hour or may last as long as 3-4 hours. Up until this point, both surgeries were laproscopic, leaving me with minimal scaring. In October 2009, since all the tests were coming back negative, this same doctor decided to perform a open exploratory surgery (leaving me with a scar from just above my pelvic bone, all the way up above my belly button--no more options of a bikini for me). He stated he removed lots of adhesions (scar tissue) and that this should correct the problem. Unfortunately, during all this and being on medical leave for so long, I lost my job, along with my health insurance and because of our countries economic problems, my husband had already lost his job previously, leaving us with no income, except unemployment compensation and no health insurance. Plus my employer fought paying unemployment, which meant I had to appeal and did not receive any income until almost 3 months later. I even swallowed my pride and tried to get state assistance, only to be told that with our unemployment compensation we were making too much money...even though we were ready to lose our home and months behind on all of our bills and the only thing keeping us afloat was my 80+ year old father-in-laws generosity, which he couldn't afford either. The same painful episodes returned, along with a constant pain that was now 24 hours a day, which Tylenol couldn't even take the edge off of and I had no where to turn, since I had no health insurance, leaving me to just live through it, as it continued to slowly keep getting worse.
For 1 1/2 years I researched on the internet. I tried heating pads, ice packs, cutting out dairy, then gluton, wheat, then sugar...all to no avail. I tried multiple vitamin options and home remedies I found online, but none of these options helped either. By May of 2011, the pain was just unbearable and I finally called my original surgeon again and begged for help, since I still had no insurance. His office manager referred me to a different hospital's resident clinic, that he also worked out of and they approved me for assistance. For three months, I was passed from one resident to another who each put me through lots of tests, but were not authorized to prescribe pain medications, and all the tests continued to come back negative. The clinic was so disorganized, no one knew what the other was doing and my original surgeon, who was supposed to be supervising what these residents were doing had no idea of what was happening with my care. In order to keep a very long story shorter I'll skip some of this, but needless to say, he told me it was all in my head, I left his office, and he actually sent me a registered letter informing me, I was no longer his patient and they revoked my assistance and expected payment on the services rendered by the residents. My only saving grace at this point, was that my husband was finally able to find a job and we only had a short wait until the health insurance was being activated.
Once the insurance became active, I went to a gastroenterologist, who was finally the first doctor to give me something to try and at a minimum make me more comfortable, prescribing Vicodin for the pain and also added in Bentyl believing it might be muscle spasms from IBS, but he also referred me to another bariatric surgeon. At this point. the constant pain was still there, as well as I was still having the episodes of severe pain, but now I had constant nausea, was vomiting more than my meals and I was having lots of trouble swallowing. This surgeon did quite a few of the tests over again to verify what the residents from the other hospital did, then preceded to add in a few others, but still..everything came back negative. Baffled, he offered to do another exploratory (laproscopic this time) surgery to look around inside and see if he could find anything. Desperate, I agreed and the surgery was scheduled for right after Christmas. ***As a funny side note to all this, during all this time, every time I would lay down in severe pain, my cat would jump up on the bed, climb on top of me and use his front paws to push down and rub the area in a downward motion that hurt really bad, like he knew exactly what was causing the problems and wanted to help.*** The surgery went perfectly and he explained afterward, that he found and repaired the largest para-esophageal hernia he had ever seen. He could not explain why this never showed up on any of the tests, but my entire stomach and part of my intestine had worked their way up, pushed my esophagus to the side and lodged next to my diaphragm. (***think my cat knew something us humans didn't?) This was formed from a hiatal hernia, that was left undiagnosed and it was allowed to just keep getting bigger.
Unfortunately, even though the para-esophageal hernia was serious and was adding to some of the symptoms, it did not stop them all and I am still having problems. I'm not sure if this bariatric surgeon couldn't figure out what was going on, or was just too busy to try, but he passed me off to another doctor. So from February to April of 2012 I was passed off from one doctor to another, like a hot potato, as more tests come back negative and no one can solve the problem, but my symptoms are getting worse and the list of symptoms continues to keep getting longer.
Currently, I have an internal medicine doctor, a pain specialist, a gastroenterologist, and a surgeon that are all now working together on my case. Unfortunately, my insurance company is fighting everything they want to do, including no longer covering office visits, most of my prescriptions, out-service tests, any urgent care visits and I am filing an appeal. (Even the exploratory surgery that discovered the para-esophageal hernia, which required me to stay overnight in the hospital and that bill alone was $17,000, they only covered $3000, stating it was an unnecessary emergency procedure). I filed for Social Security Disability in the end of April and still have heard nothing. So, my doctors are doing what they can, with their priority being keeping me as comfortable as possible and watching the stuff that they are truly concerned over, while finding a solution is basically on the back burner, since their hands are tied because of the insurance company. If I were rich, this wouldn't be a problem, but I would have to win the lotto first, what chances do I have?
None of the doctors have given me a specific diagnosis, but they believe I have abdominal nerve and muscle damage which is causing the 24/7 pain, which there is no cure for. They decided I am not a candidate for reversal of the gastric bypass, since they believe the surgery would cause even more damage to the nerves and muscles, especially since my body is not absorbing vitamins like its supposed to and they still don't know why that is. Its been suggested that the episodic pain I have after eating is visceral pain, but they don't currently know what is causing it and no medication can stop it. The edema in my feet, ankles and calfs is getting worse and is now including my knees. I can't stand for any length of time, walking is painful, stairs are out of the question, and at times it hurts so bad, I can't walk at all, so I use my office chair that has wheels to roll myself around the house...fortunately we have wood floors. In the process of trying to manage the pain, I've learned I am now allergic to medical tape too, so using the fentanyl patches didn't work, since they caused a rash and itched so bad. Methadone made me so tired, I could not stay awake, falling asleep sitting up anywhere. Currently I'm on a combination of Neurontin for the the nerve pain; Cymbalta for the muscle pain, as well as depression; morphine and Percocet. It doesn't eliminate it all still, but he is getting closer, unfortunately with having to take all of these drugs, I'm often dizzy, my depth perception is impaired, I'm often tired and driving is out of the question.
Here's my current list of symptoms, if you want to do a comparison:
Consistent (24/7)
abdominal pain. Often worse at night.
Episode Pain—double-over,
severe abdominal pain, usually after I eat
—happens about 2-3x a week.
—happens about 2-3x a week.
Shoulder/back/arm
pain---burning
pain---left side—mostly at night.
Chest Pain---about
1 x a week.
Nausea
is not constant anymore, but just happens now and then,
Vomiting
occurs about 1x a week now.
Heartburn---1-3
times a week.
Bulge
that occurs on the right side of my upper abdomen after vomiting or
sneezing/coughing hard…I push it back in….maybe a muscle spasm?
sneezing/coughing hard…I push it back in….maybe a muscle spasm?
Constipation
and diarrhea—alternates consistent
Hiccups
-on a daily basis, especially at beginning of meals.
Often
feel full with just a few bites.
Extreme
amount of gas---that is causing pressure, which I
think is some of the pain.
Edema----legs,
ankles, & feet—some days up over knees—most days can barely walk
Low
blood sugar ( I have a meter and test it) on
average 2-3 days a week.
Muscle
cramps—legs, feet, hands
My
blood pressure has been running low—
over the last couple of weeks 103/62, 101/57
over the last couple of weeks 103/62, 101/57
Swallowing
problems—mouth is really dry
Urgent
need for the bathroom, but often can’t urinate
—sometimes have to really “push” to go.
—sometimes have to really “push” to go.
Dizzy
Spells—have fallen a couple of times.
Vision
problems--Points when my vision in blurry/ double vision
left eye.
Current list of medications:
Furosemide
(Lasix) 40MG Tabs—1 every morning.
Chlordiazepoxide/Clidinium
Caps (Librax)---1 to 2 capsules, 3-4
times a day, as needed for spasms.
Omeprazole
(Prilosec) 40MG capsules---2 x a day
Ondansetron
(Zofran) 8MG Tabs-when needed nausea
Multi-Vitamin
(Over-the-counter)---1x a day
B-Complex
(Over-the-counter)—1x a day
Vitamin
D (Over-the-counter)—2000IU---1x a day.
Allegra
(Over-the-counter)—1 every night at
bedtime.
MS
Contin (Morphine Sulfate ER) 30MG tablets –3 times a day
Oxycodone/Acetaminophen
(Percocet) 10-325MG TB- 1 every 4hours as
needed.
Gabapentin
(Neurontin)---300MG 3 times a day.
Cymbalta----60MG—1 every night at bedtime
Well, not much else to say for now. My pain specialist I see at the end of July and I'm not scheduled to see the Internal medicine doctor until September, but am supposed to call if anything gets worse. The insurance company is doing nothing more than delaying my own doctors from helping me. Nice huh What the hell are we paying $700 a month for?
Sorry to have to do this update:
I apologize to all readers that would like to do comments. Unfortunately, it was necessary to block comments because I have an immature and ignorant family member that has decided to use this site for fighting grounds between my immediate family and his/her own. They decided it was okay to name name's and bring up personal family issues rather than discuss them with us like an adult. This site is intended strictly for individuals with severe abdominal pains and issues that are similar to my own and that are looking for solutions that their doctors may have overlooked or hasn't considered. I won't allow the comments section on my blog to become their war grounds, as it is not what this site was intended for.
In the future, if you would like to make a comment, please send your comments to my email: ShariLynnGardner@gmail.com and I will post them all together under one heading, as long as they are regarding this topic. So please email me and look for your comments there. Thank you, I am sorry for any inconvenience this may cause.
Wednesday, May 16, 2012
What's most important?
Hi all. I know, it's been a couple of weeks since I last updated, I've already been yelled at by a few people for not updating, so I will try to keep you all up to date a little more often.
Since the last time I posted, I have had a few appointments with my internal medicine doctor (She had basically been seeing me once a week---but is now waiting a month to check my blood levels again, so I don't go back until the 7th of June). Pretty much same for the pain specialist, I was seeing him every other week, now its a month, and I'll see him again on the 11th of June.
The EGD on the 1st was pretty uneventful, except for my having a fever of 99.9 and they almost canceled it, but he decided to go ahead and do it anyways.. All it showed was a lot of inflammation, which as of yet, they still don't know what is causing it. The biopsy came back normal. My IM doc, the Gastro Doc and the surgeon all sat down together and had a pow wow meeting about my case, but have definitely decided I am not a candidate to have the bariatric surgery reversed. At this point, they believe all of the abdominal pain that I have is being caused by nerves and muscles which have been damaged from all of the other surgeries. Unfortunately, this is not repairable and something I am most likely going to have to live with.
One additional thing has appeared, that they are not sure if its related or just got infected because of my immune system being so messed up, but I developed an abscess on the back of my thigh. Its amazing that cutting yourself shaving can cause such a problem. I (of course), thought I could take care of this myself, it was just a big zit, basically, right? Wrong? I took a needle and opened it, blood and pus came out and I threw a band-aid on it. But within a week, this thing turned into this huge, over a half-dollar size sore, that hurt like hell, looked like a big blood blister and wouldn't go away. She ended up having to put me on 2 different anti-biotics, cut it open, clean it out and I am stuck with it draining and putting on anti-biotic ointment for the next 2 weeks. Think I might stop shaving back there, if there's hair there, oh well. I won't let this happen again. Ugh!
Right now the biggest concerns are still the edema, first and foremost. I had a doppler done on my legs which showed no clots, but because the edema is so severe, I am at a very high risk of developing one.
This picture is after they've been raised a while, they are even worse if I try walking for a while, they swell almost all the way up to my knees and I can barely walk. Usually you can see the veins and some of bones in my feet, I can't wear any of my shoes, only my husband's slippers. Even my toes are swollen :(
She put me on 20mg of lasix and has now increased that to 40 mg. They reduced my Neurontin medicine to only 2 times a day, instead of 3, because it can add to the edema, but it increases the pain in my abdomen. Currently, I am supposed to either be in a lying down position, such as in bed, with my feet elevated above my heart or if I have to be up and about, my feet and calves have to be in braces or wrapped to keep the swelling down. Its painful and not much fun. She is keeping an eye on my kidneys, since they are not functioning at a very high level, but they think its because of all of the medications, but its their 2nd highest concern. Basically, because the pain in my abdomen is being managed with pain meds at this point, its been put on a back burner until they solve the edema problem. They are also keeping a very close eye on all of my vitamin levels, since it appears my body is not retaining any of them, especially the most important vitamin D. So, right now, between pain meds, nerve and muscle relaxers, and vitamins, I'm taking around 25 different pills a day. I still can't drive, since most of these medicines leave me sleepy, dizzy, or light headed. I can't focus or concentrate, which makes doing stuff like writing this blog or doing my MBA homework hard and I'm having to time it so that its done during the least amount of side effect times. And let me explain, when your taking Percocet every 4 hours and morphine at night, along with Neurontin in the morning and at night, plus muscles relaxers ever 4-6 hours, and Cymbalta at night, it doesn't leave many times during the day to not be fuzzy headed.
Oh, plus I started the battle with Social Security Disability. Not sure if I'm going to qualify and get approved or not, but filled out all the paperwork (took 4 hours) and I know my one doctor filled out his portion already. Cross your fingers for me, with only my husband working and me with no income, its been really, really tough. We need this bad, especially if it turns out I'll never be able to work again.
Well, that's about it for now. Once they figure out more I will let you know.
Since the last time I posted, I have had a few appointments with my internal medicine doctor (She had basically been seeing me once a week---but is now waiting a month to check my blood levels again, so I don't go back until the 7th of June). Pretty much same for the pain specialist, I was seeing him every other week, now its a month, and I'll see him again on the 11th of June.
The EGD on the 1st was pretty uneventful, except for my having a fever of 99.9 and they almost canceled it, but he decided to go ahead and do it anyways.. All it showed was a lot of inflammation, which as of yet, they still don't know what is causing it. The biopsy came back normal. My IM doc, the Gastro Doc and the surgeon all sat down together and had a pow wow meeting about my case, but have definitely decided I am not a candidate to have the bariatric surgery reversed. At this point, they believe all of the abdominal pain that I have is being caused by nerves and muscles which have been damaged from all of the other surgeries. Unfortunately, this is not repairable and something I am most likely going to have to live with.
One additional thing has appeared, that they are not sure if its related or just got infected because of my immune system being so messed up, but I developed an abscess on the back of my thigh. Its amazing that cutting yourself shaving can cause such a problem. I (of course), thought I could take care of this myself, it was just a big zit, basically, right? Wrong? I took a needle and opened it, blood and pus came out and I threw a band-aid on it. But within a week, this thing turned into this huge, over a half-dollar size sore, that hurt like hell, looked like a big blood blister and wouldn't go away. She ended up having to put me on 2 different anti-biotics, cut it open, clean it out and I am stuck with it draining and putting on anti-biotic ointment for the next 2 weeks. Think I might stop shaving back there, if there's hair there, oh well. I won't let this happen again. Ugh!
Right now the biggest concerns are still the edema, first and foremost. I had a doppler done on my legs which showed no clots, but because the edema is so severe, I am at a very high risk of developing one.
This picture is after they've been raised a while, they are even worse if I try walking for a while, they swell almost all the way up to my knees and I can barely walk. Usually you can see the veins and some of bones in my feet, I can't wear any of my shoes, only my husband's slippers. Even my toes are swollen :(
She put me on 20mg of lasix and has now increased that to 40 mg. They reduced my Neurontin medicine to only 2 times a day, instead of 3, because it can add to the edema, but it increases the pain in my abdomen. Currently, I am supposed to either be in a lying down position, such as in bed, with my feet elevated above my heart or if I have to be up and about, my feet and calves have to be in braces or wrapped to keep the swelling down. Its painful and not much fun. She is keeping an eye on my kidneys, since they are not functioning at a very high level, but they think its because of all of the medications, but its their 2nd highest concern. Basically, because the pain in my abdomen is being managed with pain meds at this point, its been put on a back burner until they solve the edema problem. They are also keeping a very close eye on all of my vitamin levels, since it appears my body is not retaining any of them, especially the most important vitamin D. So, right now, between pain meds, nerve and muscle relaxers, and vitamins, I'm taking around 25 different pills a day. I still can't drive, since most of these medicines leave me sleepy, dizzy, or light headed. I can't focus or concentrate, which makes doing stuff like writing this blog or doing my MBA homework hard and I'm having to time it so that its done during the least amount of side effect times. And let me explain, when your taking Percocet every 4 hours and morphine at night, along with Neurontin in the morning and at night, plus muscles relaxers ever 4-6 hours, and Cymbalta at night, it doesn't leave many times during the day to not be fuzzy headed.
Oh, plus I started the battle with Social Security Disability. Not sure if I'm going to qualify and get approved or not, but filled out all the paperwork (took 4 hours) and I know my one doctor filled out his portion already. Cross your fingers for me, with only my husband working and me with no income, its been really, really tough. We need this bad, especially if it turns out I'll never be able to work again.
Well, that's about it for now. Once they figure out more I will let you know.
Wednesday, April 25, 2012
Same old, same old
Lets see...had another Doctor appointment yesterday.
The infected cut on the back of my thigh is a lot worse, so she prescribed an antibiotic ointment to put on it three times a day. If it isn't better by next week, then she is going to refer me back to the surgeon, so he can cut it open and clean it out...not looking forward to that, so hopefully this works. Just an FYI, you really need to be careful shaving your legs!
She changed the antibiotics again for the kidney infection and edema. Since the Keflec was making me so sick and it appears not really working (she's using it to clear up my leg too), she switched me to Bactrum. She checked my urine and is convinced the kidney infection is almost gone, although I am having a lot of trouble with just going to the bathroom. It feels like I need to go really bad, but sometimes nothing happens...I just can't go. Although she thinks some of this may be caused from the Lasix pills (diuretics). Other problems still going on and not sure if related to the water pills, infection or what, but I'm really thirsty and my mouth gets really dry, to the point, I'm still having trouble swallowing. The infection on my tongue, which she says is not thrush, is still there, although it has let up a bit and has stopped bleeding, but its still there.
I can truly say, I had absolutely no idea how much water my body was holding. Between the last appointment and this one, they weighed me in the office, and I actually lost 15 pounds that was all water. Can you believe that? No wonder my weight has been fluctuating so much over the last couple of months. Even my calves look thinner than they ever have, so I'm guessing I've been retaining water for a while. I have to keep taking the water pills for a while, even though she isn't quite sure what caused the edema, it is finally starting to clear up, but its not all gone yet and the muscle cramps, charlie horses, or whatever you want to call them, that are occurring as the water goes away is really painful. My feet still feel and look like they are bruised making it extremely painful to walk...not sure how long that will last. With the water loss, I'm at risk of losing potassium, so I have to eat a banana every day and if needed, she will give me supplements for that too, when she checks my blood again next week. Plus I have to take 400IU of magnesium every day.
The blood results from last week, according to her looked pretty good, except for my Vitamin D. Even though my previous family practice doctor had me take 50,000IU once a week for 8 weeks because it was registering at a 7 then (anything below 20 is a deficiency), it registered as a 0 this time, meaning I have none in my system. The doctors will have to figure out why my body is not storing it, but in the mean time, she is having me take 2000IU 3 times a day to see if it registers next week. Currently, I am risk for Ricketts, plus having a deficiency in Vitamin D causes all kinds of problems, such as depression, muscle cramps, dental problems, nausea, etc. which are all symptoms I have now. Not sure how this is all related....so, as usual, more questions, no answers.
Anyways, Next week will be busy. I see the pain specialist again on Monday, on Tuesday my gastroenterologist is doing an EGD scope on me, and then on Thursday I see the family practice/internal medicine doctor again. Guess we go from there. I'll update again soon.
The infected cut on the back of my thigh is a lot worse, so she prescribed an antibiotic ointment to put on it three times a day. If it isn't better by next week, then she is going to refer me back to the surgeon, so he can cut it open and clean it out...not looking forward to that, so hopefully this works. Just an FYI, you really need to be careful shaving your legs!
She changed the antibiotics again for the kidney infection and edema. Since the Keflec was making me so sick and it appears not really working (she's using it to clear up my leg too), she switched me to Bactrum. She checked my urine and is convinced the kidney infection is almost gone, although I am having a lot of trouble with just going to the bathroom. It feels like I need to go really bad, but sometimes nothing happens...I just can't go. Although she thinks some of this may be caused from the Lasix pills (diuretics). Other problems still going on and not sure if related to the water pills, infection or what, but I'm really thirsty and my mouth gets really dry, to the point, I'm still having trouble swallowing. The infection on my tongue, which she says is not thrush, is still there, although it has let up a bit and has stopped bleeding, but its still there.
I can truly say, I had absolutely no idea how much water my body was holding. Between the last appointment and this one, they weighed me in the office, and I actually lost 15 pounds that was all water. Can you believe that? No wonder my weight has been fluctuating so much over the last couple of months. Even my calves look thinner than they ever have, so I'm guessing I've been retaining water for a while. I have to keep taking the water pills for a while, even though she isn't quite sure what caused the edema, it is finally starting to clear up, but its not all gone yet and the muscle cramps, charlie horses, or whatever you want to call them, that are occurring as the water goes away is really painful. My feet still feel and look like they are bruised making it extremely painful to walk...not sure how long that will last. With the water loss, I'm at risk of losing potassium, so I have to eat a banana every day and if needed, she will give me supplements for that too, when she checks my blood again next week. Plus I have to take 400IU of magnesium every day.
The blood results from last week, according to her looked pretty good, except for my Vitamin D. Even though my previous family practice doctor had me take 50,000IU once a week for 8 weeks because it was registering at a 7 then (anything below 20 is a deficiency), it registered as a 0 this time, meaning I have none in my system. The doctors will have to figure out why my body is not storing it, but in the mean time, she is having me take 2000IU 3 times a day to see if it registers next week. Currently, I am risk for Ricketts, plus having a deficiency in Vitamin D causes all kinds of problems, such as depression, muscle cramps, dental problems, nausea, etc. which are all symptoms I have now. Not sure how this is all related....so, as usual, more questions, no answers.
Anyways, Next week will be busy. I see the pain specialist again on Monday, on Tuesday my gastroenterologist is doing an EGD scope on me, and then on Thursday I see the family practice/internal medicine doctor again. Guess we go from there. I'll update again soon.
Friday, April 20, 2012
Changes and tests
Hi everyone,
This is the first chance I've had this week that I've been able to stay awake long enough to even write up a post. Between both doctor appointments from Monday and Tuesday, they switched all my medications around and I've been so sick that all I'm doing is sleeping.
The first appointment on Monday was with the pain specialist. Since the Percocet was not really working and wasn't lasting long enough, he changed me over to a long-acting pain medication. I have to admit, this scared me a bit, since he prescribed methadone. When he first mentioned this, I freaked a bit, since all I've ever heard about is the stuff junkies use on the streets. In actuality, this is not the same thing at all. In some cases, doctors actually use this same drug to help people that are addicted to heroin, morphine or other drugs, since it stops the euphoric affects, but still stops the pain. For patients like me, it stops the pain and lasts for a long time, stopping the need to take pain pills every 4 hours and now I'll be able to go every 12. Plus, once I get used to it, it will stop the "fuzzy brain" feeling that I hate. With still being in school, I have to be able to think, which the other pills were making it really difficult for me to do, but right now it makes me really, really tired, along with the other stuff they changed, I can hardly keep my eyes open. He didn't change the Neurontin, so still taking that 3 times a day, plus he added Cymbalta, which I take every night before I go to bed. Cymbalta is a anti-depressant, but it also helps to reduce muscle pain, which this doctor thinks is part of the problem. He thinks I have chronic neuropathic pain, along with some muscle damage from all of the abdominal surgeries I've had. The Neurontin stops the nerve pain, while the Cymbalta stops the muscle pain. He wants to try the combination of these 3 for a month or so and then go from there, depending on what is working and what isn't. Time will tell. His priority is stopping the pain until the other doctors can figure out what is causing it all and fix it, then hopefully I can stop taking all of this stuff.
On Tuesday, I had my first appointment with my new family practice doctor. She is actually a Internal Medicine doctor and my gastro specialist referred me to her. Her specialty is figuring out complex cases and solving puzzles, kind of like Dr. House on the television show, LOL. She seems nice, but has a tough demeanor, I think she's Russian or maybe Ukrainian, definitely makes decisions quickly, tells you what to do, and my daughter and I kept waiting for the whip to come out, so she could crack it, since I had not been following doctor's orders over the years. She wasn't too happy that I haven't had a pap in over 4 years, I skipped my last mammogram, so its been 8 years on that, plus I have a cut on the back of my right thigh that I had been trying to clear up on my own, but is now infected. With all my stomach problems, I didn't think these were important...to her that was wrong, so those will be getting taken care of soon.
First thing she did was draw blood, testing for vitamin deficiencies, and she wants to check my kidneys. She prescribed a really strong anti-biotic (Keflec 500MG, 4x a day) that I have to take for 2 weeks and these are making me so sick, I feel like I have the flu and I'm running a fever. Since the abdominal pain issues are under control for right now, she wants to clear up the infections and the edema first, then she'll concentrate on whats causing the other problems. The edema in my feet, ankles and lower legs was really bad, so I went Thursday morning for a venous ultrasound to check for clots. That came back negative, so her office called in a prescription for a diuretic (water pill) to start clearing up the retained water. Never thought it was possible to go to the bathroom this much, but its amazing that with only taking one pill, most of the swelling went down, but now they feel like they a bruised and broken, I can hardly put any weight at all on my left foot...its hurts really bad. I go back to see her again on Tuesday and then she'll decide the next step, since she should have all the results back from the blood tests. In terms of my stomach, she said, if necessary they can actually do a reversal of my gastric-bypass. Her guess right now is that I have mal-absorption, causing the vitamin deficiencies, and low blood sugar, there is more going on with my kidneys than just a simple infection...so, one step at a time.
I'll update again when I know more, for now, I'm going back to bed :)
This is the first chance I've had this week that I've been able to stay awake long enough to even write up a post. Between both doctor appointments from Monday and Tuesday, they switched all my medications around and I've been so sick that all I'm doing is sleeping.
The first appointment on Monday was with the pain specialist. Since the Percocet was not really working and wasn't lasting long enough, he changed me over to a long-acting pain medication. I have to admit, this scared me a bit, since he prescribed methadone. When he first mentioned this, I freaked a bit, since all I've ever heard about is the stuff junkies use on the streets. In actuality, this is not the same thing at all. In some cases, doctors actually use this same drug to help people that are addicted to heroin, morphine or other drugs, since it stops the euphoric affects, but still stops the pain. For patients like me, it stops the pain and lasts for a long time, stopping the need to take pain pills every 4 hours and now I'll be able to go every 12. Plus, once I get used to it, it will stop the "fuzzy brain" feeling that I hate. With still being in school, I have to be able to think, which the other pills were making it really difficult for me to do, but right now it makes me really, really tired, along with the other stuff they changed, I can hardly keep my eyes open. He didn't change the Neurontin, so still taking that 3 times a day, plus he added Cymbalta, which I take every night before I go to bed. Cymbalta is a anti-depressant, but it also helps to reduce muscle pain, which this doctor thinks is part of the problem. He thinks I have chronic neuropathic pain, along with some muscle damage from all of the abdominal surgeries I've had. The Neurontin stops the nerve pain, while the Cymbalta stops the muscle pain. He wants to try the combination of these 3 for a month or so and then go from there, depending on what is working and what isn't. Time will tell. His priority is stopping the pain until the other doctors can figure out what is causing it all and fix it, then hopefully I can stop taking all of this stuff.
On Tuesday, I had my first appointment with my new family practice doctor. She is actually a Internal Medicine doctor and my gastro specialist referred me to her. Her specialty is figuring out complex cases and solving puzzles, kind of like Dr. House on the television show, LOL. She seems nice, but has a tough demeanor, I think she's Russian or maybe Ukrainian, definitely makes decisions quickly, tells you what to do, and my daughter and I kept waiting for the whip to come out, so she could crack it, since I had not been following doctor's orders over the years. She wasn't too happy that I haven't had a pap in over 4 years, I skipped my last mammogram, so its been 8 years on that, plus I have a cut on the back of my right thigh that I had been trying to clear up on my own, but is now infected. With all my stomach problems, I didn't think these were important...to her that was wrong, so those will be getting taken care of soon.
First thing she did was draw blood, testing for vitamin deficiencies, and she wants to check my kidneys. She prescribed a really strong anti-biotic (Keflec 500MG, 4x a day) that I have to take for 2 weeks and these are making me so sick, I feel like I have the flu and I'm running a fever. Since the abdominal pain issues are under control for right now, she wants to clear up the infections and the edema first, then she'll concentrate on whats causing the other problems. The edema in my feet, ankles and lower legs was really bad, so I went Thursday morning for a venous ultrasound to check for clots. That came back negative, so her office called in a prescription for a diuretic (water pill) to start clearing up the retained water. Never thought it was possible to go to the bathroom this much, but its amazing that with only taking one pill, most of the swelling went down, but now they feel like they a bruised and broken, I can hardly put any weight at all on my left foot...its hurts really bad. I go back to see her again on Tuesday and then she'll decide the next step, since she should have all the results back from the blood tests. In terms of my stomach, she said, if necessary they can actually do a reversal of my gastric-bypass. Her guess right now is that I have mal-absorption, causing the vitamin deficiencies, and low blood sugar, there is more going on with my kidneys than just a simple infection...so, one step at a time.
I'll update again when I know more, for now, I'm going back to bed :)
Sunday, April 15, 2012
FRUSTRATION...I needed to vent.
Just a short update this time... feeling very frustrated and needed to vent a little.
I have two doctor appointments this week, Monday and Tuesday, so hopefully one will get somewhere. The edema is really bad right now...my feet and ankles, plus half way up to my knees looks like it belongs on a elephant instead of me. I can barely walk. Plus my eyelids are swollen too...certainly doesn't make me feel like leaving the house...which, since I can't really walk, I'm not doing anyways.
As of Tuesday, I will have a new family practice doctor. The last one, as it turned out, left little to be desired. I actually received a threatening letter? WTH, is that how doctor's practice now...what happened to the Hippocratic oath? Over the last few weeks, I have left voice-mails and actual messages with her office staff and never received a return phone call. Tried to set up appointments, only to be told they had no openings, not even with the other doctors in the office, so if I really needed to be seen I should go to urgent care. So, I sent her an email...which I guess was a sin. The letter I received in return stated that if I needed to reach her, I should call, leave a message or set up an appointment...(I tried all three), but that if I sent another email, she would "discharge" me, as her patient. Hmmm...well....I don't respond well to threats...so I'm "discharging" myself.
Anyways, I saw the gastro specialist last Thursday. He recommended this new doctor I am going to on Tuesday (I see the pain specialist on Monday). The Hida Scan was normal..no sphincter of oddi dysfunction, which is a good thing. But, he wants to take a look to see if anything has been missed by the other doctors, so I am scheduled for another EGD scope on May 1st. I am supposed to go get blood drawn on Thursday, so they can see if the kidney infection is gone...which, as of right now, since I am still running a fever and still have burning and flank pain, I know its not, plus the thrush is back. My immune system is shot to hell. I am just so tired of being sick...someone has got to figure this out.
Will update again later in the week...hopefully with better news.
I have two doctor appointments this week, Monday and Tuesday, so hopefully one will get somewhere. The edema is really bad right now...my feet and ankles, plus half way up to my knees looks like it belongs on a elephant instead of me. I can barely walk. Plus my eyelids are swollen too...certainly doesn't make me feel like leaving the house...which, since I can't really walk, I'm not doing anyways.
As of Tuesday, I will have a new family practice doctor. The last one, as it turned out, left little to be desired. I actually received a threatening letter? WTH, is that how doctor's practice now...what happened to the Hippocratic oath? Over the last few weeks, I have left voice-mails and actual messages with her office staff and never received a return phone call. Tried to set up appointments, only to be told they had no openings, not even with the other doctors in the office, so if I really needed to be seen I should go to urgent care. So, I sent her an email...which I guess was a sin. The letter I received in return stated that if I needed to reach her, I should call, leave a message or set up an appointment...(I tried all three), but that if I sent another email, she would "discharge" me, as her patient. Hmmm...well....I don't respond well to threats...so I'm "discharging" myself.
Anyways, I saw the gastro specialist last Thursday. He recommended this new doctor I am going to on Tuesday (I see the pain specialist on Monday). The Hida Scan was normal..no sphincter of oddi dysfunction, which is a good thing. But, he wants to take a look to see if anything has been missed by the other doctors, so I am scheduled for another EGD scope on May 1st. I am supposed to go get blood drawn on Thursday, so they can see if the kidney infection is gone...which, as of right now, since I am still running a fever and still have burning and flank pain, I know its not, plus the thrush is back. My immune system is shot to hell. I am just so tired of being sick...someone has got to figure this out.
Will update again later in the week...hopefully with better news.
Tuesday, April 10, 2012
A lot can happen in just a few days...
Mini Update---A lot can happen in just a few days.
Since I posted on Wednesday, the swelling in my feet and ankles is getting much worse (I don't think I've mentioned this in previous posts, not sure why, guess I didn't think it was really important until now). This has been happening since I had the CT scan. When I saw the surgeon for the CT Scan results, he said its because I'm not getting enough protein, since I can barely keep food down. Its the protein that holds salt and water in the blood vessels and when it gets too low, edema occurs. So basically, this means I have malnutrition. I have to keep my feet elevated above my heart, which means laying down a lot, which is hard for me. On Friday this swelling was so bad, my feet actually hurt and it was hard to walk. Plus, I started to have a lot of pain and burning, whenever I went to the bathroom, with pain on my right side and in my lower back. I tried to push both off, figuring I could wait until I saw my gastro specialist on Thursday. But, by Monday morning, I didn't think I could wait, dealing with the burning, because it was getting really bad and the swelling (edema) is constant now. As usual lately, haven't been able to reach my family practice doctor (so much for thinking this one cared...guess she's another one that thinks this is all in my head), so I decided to go to urgent care, after the hida scan, and its time to find another doctor (I'll start working on this today).
So anyways, I had the Hida Scan yesterday (Monday) morning. I truly hope I don't have to do another one of those anytime soon, let me tell ya, it was not fun. Since narcotic medications affect the outcome of the test, I was told I had to be off all pain medication for 24 hours before it. So, needless to say, this completely ruined my Easter Sunday, as once the pain medications wore off, I spent the entire day and night (didn't even manage a half hour of sleep---zip, zero, none) in pain, pain, pain. The test itself wasn't painful, although the first injection of the CCK enzyme caused a lot of nausea (usually this is used to cause the gallbladder to contract, but for me they were looking at the sphincter of oddi), after this they injected a radioactive isotope, but that didn't cause any reaction. This appointment took about 2 hours all together (registration, getting the IV and injections and then the scan--which believe it or not, I slept through. I don't think he gave me any pain medication, guess I was just that tired from not sleeping and relieved to be getting it over with). I'll get the results on Thursday when I see the gastro specialist.
I went urgent care afterwards and that doctor was really nice. I wish she had her own office, but she only works there :( During this appointment I had to pee in a cup (big surprise), she pressed on my abdomen and back, etc. and she looked at my feet and ankles too. I had a fever, even though I didn't know it, and the results showed bacteria & blood in my urine. She explained that it was a good thing I didn't wait until Thursday, since what once started as another bladder infection (I had one in November) was now a kidney infection. A kidney infection can be really serious if it is let go for too long, since the infection can enter the blood stream and it risks serious damage to the kidneys. So she put me on anti-biotics for the next 14 days, plus she gave me this great numbing medicine, so I can go to the bathroom without the burning...although, my pee is orange now, LOL. As for my feet and ankles, she gave me a prescription for these special socks to wear and she insists I need to tell the gastro specialist to check my blood work. The malnutrition is wreaking havoc with my immune system and I keep getting sick: the edema, bladder and kidney infections, the thrush infection, colds and flu, and I'm at risk for worse.
Anyways, I'll update again after I talk to him on Thursday and see what he decides to do next.
Obviously, this isn't in my head, someone needs to figure out what is wrong with me before I get too sick.
Since I posted on Wednesday, the swelling in my feet and ankles is getting much worse (I don't think I've mentioned this in previous posts, not sure why, guess I didn't think it was really important until now). This has been happening since I had the CT scan. When I saw the surgeon for the CT Scan results, he said its because I'm not getting enough protein, since I can barely keep food down. Its the protein that holds salt and water in the blood vessels and when it gets too low, edema occurs. So basically, this means I have malnutrition. I have to keep my feet elevated above my heart, which means laying down a lot, which is hard for me. On Friday this swelling was so bad, my feet actually hurt and it was hard to walk. Plus, I started to have a lot of pain and burning, whenever I went to the bathroom, with pain on my right side and in my lower back. I tried to push both off, figuring I could wait until I saw my gastro specialist on Thursday. But, by Monday morning, I didn't think I could wait, dealing with the burning, because it was getting really bad and the swelling (edema) is constant now. As usual lately, haven't been able to reach my family practice doctor (so much for thinking this one cared...guess she's another one that thinks this is all in my head), so I decided to go to urgent care, after the hida scan, and its time to find another doctor (I'll start working on this today).
So anyways, I had the Hida Scan yesterday (Monday) morning. I truly hope I don't have to do another one of those anytime soon, let me tell ya, it was not fun. Since narcotic medications affect the outcome of the test, I was told I had to be off all pain medication for 24 hours before it. So, needless to say, this completely ruined my Easter Sunday, as once the pain medications wore off, I spent the entire day and night (didn't even manage a half hour of sleep---zip, zero, none) in pain, pain, pain. The test itself wasn't painful, although the first injection of the CCK enzyme caused a lot of nausea (usually this is used to cause the gallbladder to contract, but for me they were looking at the sphincter of oddi), after this they injected a radioactive isotope, but that didn't cause any reaction. This appointment took about 2 hours all together (registration, getting the IV and injections and then the scan--which believe it or not, I slept through. I don't think he gave me any pain medication, guess I was just that tired from not sleeping and relieved to be getting it over with). I'll get the results on Thursday when I see the gastro specialist.
I went urgent care afterwards and that doctor was really nice. I wish she had her own office, but she only works there :( During this appointment I had to pee in a cup (big surprise), she pressed on my abdomen and back, etc. and she looked at my feet and ankles too. I had a fever, even though I didn't know it, and the results showed bacteria & blood in my urine. She explained that it was a good thing I didn't wait until Thursday, since what once started as another bladder infection (I had one in November) was now a kidney infection. A kidney infection can be really serious if it is let go for too long, since the infection can enter the blood stream and it risks serious damage to the kidneys. So she put me on anti-biotics for the next 14 days, plus she gave me this great numbing medicine, so I can go to the bathroom without the burning...although, my pee is orange now, LOL. As for my feet and ankles, she gave me a prescription for these special socks to wear and she insists I need to tell the gastro specialist to check my blood work. The malnutrition is wreaking havoc with my immune system and I keep getting sick: the edema, bladder and kidney infections, the thrush infection, colds and flu, and I'm at risk for worse.
Anyways, I'll update again after I talk to him on Thursday and see what he decides to do next.
Obviously, this isn't in my head, someone needs to figure out what is wrong with me before I get too sick.
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