Friday, October 28, 2011
Addition to Last Night's Update
The tilt table test that will test my autonomic nervous system has now been scheduled for Monday and my file has been sent to the neurologist for referral so his office should be calling me soon to set up that appointment.
Thursday, October 27, 2011
Big Update
I will say sorry ahead of time for the long update but since I haven't updated this for a while there are multiple things that I need to include. So here's an update on all of it. Also, if you are reading this blog please leave me a comment so I know about you.
I saw my pain specialist today though who thinks it is the best option for me would be a neurostimulator but my insurance won't approve that right now so he's going to try a celiac plus block. It's in the air whether that will help me but the possible benefits out way the risks and if it does help it should give me 6 or 8 months of relief and if it works it will prove to my health insurance company that a neurostimulator will work for me. That will happen on November 15th unless something changes.
My primary care doctor has put me on medication for my daily migraines and depression and she wants to send me to have a tilt table test done but it can't be done when I have any type of infection and I've had several in the last month or two. She also plans on sending me to a neurologist for the migraines once she gets down to the bottom of my recent kidney issues. For the last week or so I've had right flank pain, I've had the chills, my ankles are swollen, I haven't urinated much at all and when I did I had to strain to go at all. At first she thought it was a kidney infection but that has come back negative so I had an ultrasound of my kidneys and bladder today to look for kidney stones or other issues that might be causing the issues. I should hear back about that on Monday.
My GI doctor is happy where I am at and how I'm doing besides she wants me to exercise more and cut dairy out of my diet again since I'm lactose intolerance but just seemed to forget about that somehow. Most of the time I'm eating again which she liked to hear but I still can't eat normally. I can though eat a pretty large amount and balanced diet as long as I eat very often and eat very small amounts each time. I continue to gain weight but that is not a concern of hers right now especially since I'm starting back to exercise again and I'm not malnourished.
I have started doing biofeedback twice a month to hopeful help me to deal with the pain, nausea, and stress that comes along with this illness. So far I haven't noticed any difference even though my vital signs are showing a difference.
I have also started back to pilates once a week now and while that has caused me to be really sore and sick for several days after each class with every week I go those issues decrease so that's promising. I'm trying to also do some form of cardio at least two or three days a week but that doesn't always happen.
I'm still going to the chiropractor and getting a massage twice a week during most weeks courtesy of my car insurance company. It helps to just settle my body down since when I vomit a lot or are in a lot of pain, etc. my body freaks out and all of my muscles tense up.
I'm also working hard to get my social life back again but it's difficult because my schedule does not work well with most. My goal is to get out with friends at least twice a week but I'm okay if it only happens once a week.
Lastly, all of our yard sale stuff is done until next spring but I continue to try to sell items on craigslist and look for other opportunities to get money coming in even though I can't work really at all due to the way my illness is. I do plan on posting several items on craigslist and looking into selling some sort of crafts on an etsy site.
I saw my pain specialist today though who thinks it is the best option for me would be a neurostimulator but my insurance won't approve that right now so he's going to try a celiac plus block. It's in the air whether that will help me but the possible benefits out way the risks and if it does help it should give me 6 or 8 months of relief and if it works it will prove to my health insurance company that a neurostimulator will work for me. That will happen on November 15th unless something changes.
My primary care doctor has put me on medication for my daily migraines and depression and she wants to send me to have a tilt table test done but it can't be done when I have any type of infection and I've had several in the last month or two. She also plans on sending me to a neurologist for the migraines once she gets down to the bottom of my recent kidney issues. For the last week or so I've had right flank pain, I've had the chills, my ankles are swollen, I haven't urinated much at all and when I did I had to strain to go at all. At first she thought it was a kidney infection but that has come back negative so I had an ultrasound of my kidneys and bladder today to look for kidney stones or other issues that might be causing the issues. I should hear back about that on Monday.
My GI doctor is happy where I am at and how I'm doing besides she wants me to exercise more and cut dairy out of my diet again since I'm lactose intolerance but just seemed to forget about that somehow. Most of the time I'm eating again which she liked to hear but I still can't eat normally. I can though eat a pretty large amount and balanced diet as long as I eat very often and eat very small amounts each time. I continue to gain weight but that is not a concern of hers right now especially since I'm starting back to exercise again and I'm not malnourished.
I have started doing biofeedback twice a month to hopeful help me to deal with the pain, nausea, and stress that comes along with this illness. So far I haven't noticed any difference even though my vital signs are showing a difference.
I have also started back to pilates once a week now and while that has caused me to be really sore and sick for several days after each class with every week I go those issues decrease so that's promising. I'm trying to also do some form of cardio at least two or three days a week but that doesn't always happen.
I'm still going to the chiropractor and getting a massage twice a week during most weeks courtesy of my car insurance company. It helps to just settle my body down since when I vomit a lot or are in a lot of pain, etc. my body freaks out and all of my muscles tense up.
I'm also working hard to get my social life back again but it's difficult because my schedule does not work well with most. My goal is to get out with friends at least twice a week but I'm okay if it only happens once a week.
Lastly, all of our yard sale stuff is done until next spring but I continue to try to sell items on craigslist and look for other opportunities to get money coming in even though I can't work really at all due to the way my illness is. I do plan on posting several items on craigslist and looking into selling some sort of crafts on an etsy site.
Saturday, October 15, 2011
Why I Started This Blog and What I Hope to Get Out of It
Hey guys- a friend of mine suggested to me to make a page of facebook to see if anyone on there could help figure out why I'm sick and I did that but then I thought a blog would be better because keeping both the facebook page updated and my caringbridge blog.
What I hope to do from starting this blog is to get new ideas since two heads are better then one and new eyes on the situation can never be a bad thing. What I hope to get out of posting this page is new ideas when it ...comes to diagnosis, roads we haven't explored, life style changes I haven't tried, specialty doctors I haven't seen, medications I haven't tried, etc. Any ideas/suggestions/questions are appreciated.
My "story" when it comes my health issue has been added below in another post along with my caringbridge entries. The older entries are first for some reason and I can't figure out how to change that so the latest entries are at the end of the blog right now but the next time I post an update it will be at the top of the blog.
I would appreciate it if you would check that out and give nothing else you will have more of an idea of what I live with everyday. Feel free to send the link to my blog to anyone you know that might be helpful to me. Also, I plan on posting coupon links/good deals/freebies that I find since I've really got into that here lately since I'm not working and my medical expenses are huge! Thanks ahead of time!
"My Story"
I'm a 25 year old female with a teaching degree but I'm unable to teach or move out on my own due to health issues. I've seen many different doctors and hundreds of tests no one has been able to figure out what is wrong with me and I continue to get worse as time passes by. So I'm hoping that someone will see this on here and be able to help me or can send me in the right direction. I'm going to try to not make this a book so I'm only trying to hit the high points but if you have questions or are confused send me a message. I hope it makes sense to others when they read it but I'm having a rough day and I haven't slept much.
It all started 9 years ago with some nausea and abdominal pain especially after I ate. My primary care doctor could not figure out what the issue was so he sent me to see Dr. Alberto Castellanos, a gastroenterologist here inLexington University of Louisville Lexington
I was then sent to see Dr. Kathleen Martin here inLexington
I've been to a neurologist, cardiologist, gynecologist, hematologist, a health psychologist, etc. I even saw one of the world's best motility specialists in the nation who found out that I have vagus nerve nueropathy in one of the test he ran but after he ran a ton more testing he decided that the best thing for me to do is get a feeding tube and IV fluids around the clock at home until everything settled down but I decined that offer because it would take what little quality of life I still have away, I'm not underweight or malnourished- actually I'm overweight and continue to gain more, and it would open me up to more infection risks. I had an appointment to go to Mayo Clinic but my insurance wouldn't pay for it.
We've tried a million different medications, diets, lifestyle changes, etc. but I continue to get worse. I have recently changed to a new family doctor since my old one was just kinda throwing stuff under the rug so to speak.
Since I continue to get worse and more issues keep popping up I'm not able to work at all now. I'm waiting on a hearing with social security about getting disability. Also, as soon as we seem to start figuring things out my symptoms change so that makes it really difficult.
Here are a list of my current symptoms in no particular order: "being pale as a ghost" in my mom's words on my face and lips, extreme fatigue, insomnia, migraines, relentless nausea, really dark circles around my eyes, vomiting, chronic severe abdominal pain, blood pressure/pulse extremes, heat/cold intolerance, mostly chronic constipation but diarrhea has been an issue in the past, flushing of the face lightheadedness, joint and muscle pains, bloating, weight gain, occasional low grade fever, brain fog, muscles tension, and symptoms kinda comes in waves or flare-ups when symptoms are worse then normal but I never feel "normal". Things that makes it worse: heat, fatigue, lack of enough sleep or rest, too much activity, eating/drinking too much, etc.
I know that list is not complete but that's all of the symptoms and stuff I can think of since I'm so tired tonight. If I remember anything else I will add it to the list at a later time. My current diagnosis are gastroparesis, irritable bowel syndrome, vagus nerve nueropathy, tachycardia, acid reflux, insomnia, anxiety, depression, and chronic migraines.
It all started 9 years ago with some nausea and abdominal pain especially after I ate. My primary care doctor could not figure out what the issue was so he sent me to see Dr. Alberto Castellanos, a gastroenterologist here in
I was then sent to see Dr. Kathleen Martin here in
I've been to a neurologist, cardiologist, gynecologist, hematologist, a health psychologist, etc. I even saw one of the world's best motility specialists in the nation who found out that I have vagus nerve nueropathy in one of the test he ran but after he ran a ton more testing he decided that the best thing for me to do is get a feeding tube and IV fluids around the clock at home until everything settled down but I decined that offer because it would take what little quality of life I still have away, I'm not underweight or malnourished- actually I'm overweight and continue to gain more, and it would open me up to more infection risks. I had an appointment to go to Mayo Clinic but my insurance wouldn't pay for it.
We've tried a million different medications, diets, lifestyle changes, etc. but I continue to get worse. I have recently changed to a new family doctor since my old one was just kinda throwing stuff under the rug so to speak.
Since I continue to get worse and more issues keep popping up I'm not able to work at all now. I'm waiting on a hearing with social security about getting disability. Also, as soon as we seem to start figuring things out my symptoms change so that makes it really difficult.
Here are a list of my current symptoms in no particular order: "being pale as a ghost" in my mom's words on my face and lips, extreme fatigue, insomnia, migraines, relentless nausea, really dark circles around my eyes, vomiting, chronic severe abdominal pain, blood pressure/pulse extremes, heat/cold intolerance, mostly chronic constipation but diarrhea has been an issue in the past, flushing of the face lightheadedness, joint and muscle pains, bloating, weight gain, occasional low grade fever, brain fog, muscles tension, and symptoms kinda comes in waves or flare-ups when symptoms are worse then normal but I never feel "normal". Things that makes it worse: heat, fatigue, lack of enough sleep or rest, too much activity, eating/drinking too much, etc.
I know that list is not complete but that's all of the symptoms and stuff I can think of since I'm so tired tonight. If I remember anything else I will add it to the list at a later time. My current diagnosis are gastroparesis, irritable bowel syndrome, vagus nerve nueropathy, tachycardia, acid reflux, insomnia, anxiety, depression, and chronic migraines.
February 7th Update
Having a tough day today. Dealing a lot of pain today and none of the medications I have are not working. I have a call into my family doctor to see if he can give me something stronger to help me through these flare-ups especially until they are able to get me in to see a pain doctor- this plan is what the specialist at U of L has suggested. He also suggested starting IV fluids and medications but I told him I didn't want to go down that road right now since the vomiting is pretty well controlled with oral meds, I'm pretty sure that I'm not dehydrated, and I need to save my veins for when I really need IVs.
I've been able to eat pretty well today without vomiting once. Due to the pain issues I'm having sleep issues too. I've probably only had 10 hours of sleep in the last 3 days. I'm just glad that can take this time to take care of myself and get healthy.
I've been able to eat pretty well today without vomiting once. Due to the pain issues I'm having sleep issues too. I've probably only had 10 hours of sleep in the last 3 days. I'm just glad that can take this time to take care of myself and get healthy.
February 9th Update
Saw my family doctor and the dentist both today. Got good and bad news.
Bad news: my teeth are showing signs of damage from all of the vomiting. I go back Friday morning to get them cleaned well and have x-rays taken of all of them. The dentist is hoping there isn't too much damage to them but it is difficult for her to tell until after they are cleaned better. I most likely will need to come in every couple of months to get them cleaned until I am no longer vomiting on a regular basis. The tooth I thought I had a cavity in though ended up just being really sensitive and can be easily by using Sensodyne on it for a few days.
Good news: My family doctor was able to take me off of two more medications I was on. He did replace one and believes the medication he put me on will help my pain without me having to be on pain medication all of the time. He said if this medication does work I should see results in the next 24 hours! I've already took two doses but all I've noticed so far is it has made me pretty groggy, this is to be expected and should be better tomorrow. It did help me a nice nap today which was great since I am beyond exhausted now because I have barely got any sleep in the last five days. Only time will tell though.
Bad news: my teeth are showing signs of damage from all of the vomiting. I go back Friday morning to get them cleaned well and have x-rays taken of all of them. The dentist is hoping there isn't too much damage to them but it is difficult for her to tell until after they are cleaned better. I most likely will need to come in every couple of months to get them cleaned until I am no longer vomiting on a regular basis. The tooth I thought I had a cavity in though ended up just being really sensitive and can be easily by using Sensodyne on it for a few days.
Good news: My family doctor was able to take me off of two more medications I was on. He did replace one and believes the medication he put me on will help my pain without me having to be on pain medication all of the time. He said if this medication does work I should see results in the next 24 hours! I've already took two doses but all I've noticed so far is it has made me pretty groggy, this is to be expected and should be better tomorrow. It did help me a nice nap today which was great since I am beyond exhausted now because I have barely got any sleep in the last five days. Only time will tell though.
February 14th Update
The new medication my family doctor started me on last Wednesday is helping some. More than anything it is helping me get the rest I so desperately need but it is starting to settle my system down some in return reducing the amount of pain I am in. I am in no way feeling great but it is an improvement to where I was at this time last week. It is also great to actually sleep at night now! Also, after more x-rays and a good cleaning my teeth aren't in as bad as shape as my dentist originally thought!
I did find out today though that I most likely have endometriosis on top of all of the digestive system issues and it could be part of the pain I'm currently dealing with. I go in for more testing to check on that issue on March 1st and after that we will know whether or not I will need surgery to take care of this issue.
I'm still pretty unstable but the vomiting has slowed down for the time being, the pain is starting to get more under control, I'm gaining weight, I haven't had issues with dehydration in several weeks, I'm eating decent and I'm finally getting the rest I need. We head back to Louisville on Wednesday to see what the next steps are with digestive system issues.
I did find out today though that I most likely have endometriosis on top of all of the digestive system issues and it could be part of the pain I'm currently dealing with. I go in for more testing to check on that issue on March 1st and after that we will know whether or not I will need surgery to take care of this issue.
I'm still pretty unstable but the vomiting has slowed down for the time being, the pain is starting to get more under control, I'm gaining weight, I haven't had issues with dehydration in several weeks, I'm eating decent and I'm finally getting the rest I need. We head back to Louisville on Wednesday to see what the next steps are with digestive system issues.
February 15th Update
I posted this on facebook but I thought it was just amazing so I thought I would also put the link on here. http://rushingforrushton.blogspot.com/2010/08/day-in-life-of-gastroparesis.html
February 16th Update
I made yet another trip to Louisville today to meet with Dr. Wo, my motility specialist this afternoon. He was happy with theprogress I've made since I saw him a month ago. This was the first time since August that I have not lost weight when I saw him and I was looking overall much more healthy with my coloring, etc. He was also very happy that in the last month I have not needed home health, IV fluids in the doctor's office, have not had to go to the ER and have not been admitted to the hospital. Dr. Wo's plan this time around is to just keep an eye on things until the pain specialist is able to get my pain issues under control (seeing that doctor on Friday) and until we find out for sure if I do in deed have endometriosis (and if I do how I respond once I have surgery to help out with that). I go back to see him again in another month and we will see where we are going to go from there.
February 18th Update
Have had my feel of doctor's offices this week but they were all good visits so I can't complain. I saw a pain specialist this morning. He doesn't know if he can help me or not but is willing to try. He has treated one other person with issues similar to mine before who was actually also a patient of Dr. Wo's. The only difference is his other patient already had the gastric stimulator put in before she came to see the pain specialist and it ended up that the simulator was causing her pain because once it was taken out she no longer had problems. So, this doctor is planning on trying some epidural injections and some non-naroctic medication, then going on from there.
I'm glad this week is over though, it's been quite a long week full of doctor's appointments and I'm not feeling well at all. I haven't been able to really eat in the last two days, only been able to drink very little, and in quite a bit of pain. I'm hoping resting for the next several days will help with that though.
I'm glad this week is over though, it's been quite a long week full of doctor's appointments and I'm not feeling well at all. I haven't been able to really eat in the last two days, only been able to drink very little, and in quite a bit of pain. I'm hoping resting for the next several days will help with that though.
February 20th Update
So I guess this last week was just too much for my body because I've gone backwards quite a bit. I'm pretty well where I was a month ago. I'm not able to eat because when I do eat something I either throw it right back up or it causes horrible pain, along with taking every bit of energy that I have. Drinking is a little easier because it only causes pain but even though the pain gets worse when I drink something I am trying to make sure I drink enough so I won't have to have IV fluids. I'm having trouble sleeping again due to the nausea and vomiting. Sitting up for extended periods of time or even taking a shower is difficult again because my energy level is very low again. I'm still hopeful that I'll start going back in the right direction health-wise once I catch up on my rest and chill out for a couple days.
February 23rd Update
I'm doing now doing a little bit better since I updated this last. I had to stay on liquids only for six days but did not lose weight from it which is a good thing. I ended up having to get IV fluids on Tuesday and since then things have started turning around. My doctor in Louisville gave me the green light to start introducing solid foods into my diet again as long as it didn't start the vomiting back up too. Overall I've done quite well, still not eating a huge amount but what I have ate has stayed down. The abdominal pain I had been in has also decreased quite a bit. I'm still very tired but part of it is from where I was up all night Monday night due to pain and vomiting. Things seem to be turning around, just in time where I should be able to enjoy dinner out with my family on Friday for my mom's birthday!
February 28th Update
Since my last update I've been able to go back to eating solid foods again without too much in the way of vomiting or increase in abdominal pain. I'm still struggling with drinking enough fluids but I am not dehydrated due to the fact that I am drinking a lot more Gatorade than normal. I was starting to feel better when something else hit me, I don't know whether it is a virus or what but it's took everything out of me. I'm not nearly as tired today as I have been but Thursday, Friday, and Saturday I couldn't stay awake for more than an hour or two at most. Then I started running a pretty high fever yesterday that has yet to go away even with Tylenol. Right now I'm just trying to let it run it's course unless other issues pop up.
In other news, we are yet again fighting humana to cover a procedure to help with my pain control. They don't want to pay for it even though it is better for me in the long run. We have tried several different non-narcotic pain medication and none of them have helped and frankly the pain specialist doesn't believe any other medications will help me for the pain issues due to my digestive system issues. I also go on Wednesday for some tests to check to see if I have endometriosis or not. If I do have endometriosis, I'll be scheduling surgery for them to go in there to look to see if I truly have it then they will try to take it while they are in there. I'll update this after that appointment.
In other news, we are yet again fighting humana to cover a procedure to help with my pain control. They don't want to pay for it even though it is better for me in the long run. We have tried several different non-narcotic pain medication and none of them have helped and frankly the pain specialist doesn't believe any other medications will help me for the pain issues due to my digestive system issues. I also go on Wednesday for some tests to check to see if I have endometriosis or not. If I do have endometriosis, I'll be scheduling surgery for them to go in there to look to see if I truly have it then they will try to take it while they are in there. I'll update this after that appointment.
March 1st Update
Fever is gone, still kinda tired but I did have a much better day today than I've have had recently on several fronts. I was able eat well today with minimal pain/nausea because I really watched what I ate, how much I ate, and how often I ate. I'm really going to try to work on this since it seems to help quite a bit, it's just quite difficult to make myself eat that way. With the weather being so nice today and feeling pretty good I was able to go on a very nice walk. It felt so good getting outside and being active again. I can't wait for spring to be here for good so I can get out more, get back to walking and swimming in turn increasing my strength, endurance and overall mood.
Also, if you are reading this I would appreciate it if you would sign the guestbook so I know who is reading/checking this website.
Also, if you are reading this I would appreciate it if you would sign the guestbook so I know who is reading/checking this website.
March 2nd Update
I had an ultrasound done today and saw the gynecologist. Everything looked good on the ultrasound but the doctor said that it is not unusual to have a clear ultrasound but still have issues sincemany GYN issues don't show up on anything. With the information we have the doctor doesn't know if I actually do have GYN issues or if it is intestinal issue. So the next step is exploratory surgery. This is the only way to rule anything in and out at this point. I don't have a date yet but I should have one by the end of the week if not sooner. This is very minor surgery with the maximum down time no more than 2 or 3 weeks and it will be outpatient. I will update this again once I find out anything else.
March 9th Update
So surgery is in the morning. I'm as ready as I can be for it. After a weekend of pretty much only liquids, not much sleep, a constant temperature and not doing much of anything, I'm going into surgery not 100% but the doctor doesn't seem to think it is a problem. There are risks like any surgery but they are very minimal though. Also, I will be talking to the anesthesiologist beforehand and they are going to do their best to keep my GI issues in check with pre-medicating me for it before any issues come up. Surgery has been scheduled for Tuesday March 8th.
Last time I saw him he told me a week or two of downtime and I'd be back to what is normal for me right now but today he said the recovery will probably be closer to my recovery when I had my gallbladder removed which was six weeks so we will see. It all really depends on what they have do and what they find once they get in there.
I will try to update this again as soon as I feel up to it after surgery. Thank you everyone for all of your thoughts and prayers. It is greatly appreciated.
Last time I saw him he told me a week or two of downtime and I'd be back to what is normal for me right now but today he said the recovery will probably be closer to my recovery when I had my gallbladder removed which was six weeks so we will see. It all really depends on what they have do and what they find once they get in there.
I will try to update this again as soon as I feel up to it after surgery. Thank you everyone for all of your thoughts and prayers. It is greatly appreciated.
March 9th Update
I'm doing okay, in quite a bit of pain, but overall doing pretty well. I have a small bit of endometriosis but they are planning on just keeping an eye on it. It was very little and would cause more issues to leave in than it is to leave it alone. So good news and bad news, there are not any GYN issues going on but that means there are more GI issues going on that we do not know of.
Had complications from surgery, so it was looking like I was going to have to head back to Central Baptist but we didn't end up having to go after all, because time and non oral medications got things under control. I was vomiting and both my pulse/heart rate were really high.Only time will tell if I can make it through the night without having to go though. I was able to drink a little of a milkshake and keep it down, but the true test will be when I take my medication again, here in a little bit and if my blood pressure and pulse will stay under control.
Now I'm really tired and in pain after the first few days I should be okay.
Had complications from surgery, so it was looking like I was going to have to head back to Central Baptist but we didn't end up having to go after all, because time and non oral medications got things under control. I was vomiting and both my pulse/heart rate were really high.Only time will tell if I can make it through the night without having to go though. I was able to drink a little of a milkshake and keep it down, but the true test will be when I take my medication again, here in a little bit and if my blood pressure and pulse will stay under control.
Now I'm really tired and in pain after the first few days I should be okay.
March 10th Update
Here it is almost 48 hours after surgery and my recovery process has not been an easy one. I spoke to my doctor's nurse four times today because I'm having difficulties with peeing and having bowel movements after surgery due to the medications they gave me during my surgery, my nausea has got somewhat better than it has been and I haven't vomited since Tuesday afternoon. I am now also able to eat solids and keep them down all day today which is an improvement but I am still struggling to drink enough though.
I'm also covered from head to toe in a rash and it itches, the doctor can't figure out what might have caused it so now along with nausea medicine and pain medicine, I also have to take benadryl every four hours to try to clear that up. While the vomiting has stopped the pain has increased quite a bit. My doctor's nurse said it is quite normal for the second day is usally harder than the day of surgery because the medication they give you during surgery can last close to 24 hours. The only thing is my pain is only getting worse instead of better especially when from when I got out of surgery until now. My pain was more soreness than anything but now I'm getting sharp stabbing pain around the incision sites when I get up and move around. It sucks! My doctor originally told me this afternoon to stop taking the pain medication and to take benadryl so the rash would clear up even though we don't have any clue to what caused it.
I feel asleep this afternoon and my medication alarm didn't go off so I was 1 1/2hours late in taking my medication and because of that I was in tears from all of the pain. The pain had been getting worse throughout the day so my mom suggested that I call the doctor on call. That doctor said to go back on the pain medication, and add Motrin to the mix but if that didn't help I would need to go to the ER. I'm trying my best to avoid that at all cost, originally my doctor said that if I wasn't feeling any better by Friday morning let them know and they would work me in to see the doctor but I believe I'm going to actually have call them before then if things don't settle down pretty soon I'll be there sooner than later. I totally understand it takes time to heal but I wasn't feeling great going into the surgery and then throwing this surgery into this situation probably wasn't the best thing but you do what you have to do. I do know that there are many other surgeries that are worse than the one I had done but still recovery has not been fun. I just think the digestive system doesn't like to be messed with in any way or form (scopes, tests, and even other surgeries in the abdominal cavity that have nothing to do with the digestive system).
Other than those issues, I have been able to eata pretty "normal" diet today, I've drunk a little more even though it's not nearly as much as I should be. As long as I get settled and say still the pain is manageable but even the slightest movement causes a lot of pain. So right now it's just a waiting game so I can recover from this surgery and move on to continue trying to figuring out what our next step is with the GI stuff.
I'm also covered from head to toe in a rash and it itches, the doctor can't figure out what might have caused it so now along with nausea medicine and pain medicine, I also have to take benadryl every four hours to try to clear that up. While the vomiting has stopped the pain has increased quite a bit. My doctor's nurse said it is quite normal for the second day is usally harder than the day of surgery because the medication they give you during surgery can last close to 24 hours. The only thing is my pain is only getting worse instead of better especially when from when I got out of surgery until now. My pain was more soreness than anything but now I'm getting sharp stabbing pain around the incision sites when I get up and move around. It sucks! My doctor originally told me this afternoon to stop taking the pain medication and to take benadryl so the rash would clear up even though we don't have any clue to what caused it.
I feel asleep this afternoon and my medication alarm didn't go off so I was 1 1/2hours late in taking my medication and because of that I was in tears from all of the pain. The pain had been getting worse throughout the day so my mom suggested that I call the doctor on call. That doctor said to go back on the pain medication, and add Motrin to the mix but if that didn't help I would need to go to the ER. I'm trying my best to avoid that at all cost, originally my doctor said that if I wasn't feeling any better by Friday morning let them know and they would work me in to see the doctor but I believe I'm going to actually have call them before then if things don't settle down pretty soon I'll be there sooner than later. I totally understand it takes time to heal but I wasn't feeling great going into the surgery and then throwing this surgery into this situation probably wasn't the best thing but you do what you have to do. I do know that there are many other surgeries that are worse than the one I had done but still recovery has not been fun. I just think the digestive system doesn't like to be messed with in any way or form (scopes, tests, and even other surgeries in the abdominal cavity that have nothing to do with the digestive system).
Other than those issues, I have been able to eata pretty "normal" diet today, I've drunk a little more even though it's not nearly as much as I should be. As long as I get settled and say still the pain is manageable but even the slightest movement causes a lot of pain. So right now it's just a waiting game so I can recover from this surgery and move on to continue trying to figuring out what our next step is with the GI stuff.
March 13th Update
So recovery from surgery has been quite difficult. I've been having a lot of trouble with nausea/vomiting, severe pain, lack of appetite, and lack of sleep.
The nausea and vomiting has went away but my appetite has almost completely went away. Eating has become a chore unless it is milk based. I'm lactose intolerant and have never been big on anything that has milk in it but in the last week I haven't been able to eat/drink enough milk products. I hadn't had a milkshake in probably several years until this week when I've had five and we are now making them so we can add protein powders/nutrient mixes in them.
I've had severe pain since surgery and the pain medication my doctor gave me was a joke! I mean tynelol works better than it does and tynelol doesn't do much. I went in to see the GYN, he ran some tests but pretty much said that all of my problems with recovering from surgery was from my digestive system problems and was not connected in any way to the surgery! All of the tests he ran came back normal besides them finding that I had a urinary tract infection. He gave me medicine for that and told me to come back tomorrow morning for my post-op visit but did not give me anything or tell me anything I could do to help with all of the pain I'm in besides going to the ER. I refuse to do that even with three different doctors telling me to go though because all they would probably do is pump me full of pain medicine and send me home. Then once that medicine wore off I would be back at square one.
I'm just trying to push through it all but it's just not fair that I have to suffer this much.
The nausea and vomiting has went away but my appetite has almost completely went away. Eating has become a chore unless it is milk based. I'm lactose intolerant and have never been big on anything that has milk in it but in the last week I haven't been able to eat/drink enough milk products. I hadn't had a milkshake in probably several years until this week when I've had five and we are now making them so we can add protein powders/nutrient mixes in them.
I've had severe pain since surgery and the pain medication my doctor gave me was a joke! I mean tynelol works better than it does and tynelol doesn't do much. I went in to see the GYN, he ran some tests but pretty much said that all of my problems with recovering from surgery was from my digestive system problems and was not connected in any way to the surgery! All of the tests he ran came back normal besides them finding that I had a urinary tract infection. He gave me medicine for that and told me to come back tomorrow morning for my post-op visit but did not give me anything or tell me anything I could do to help with all of the pain I'm in besides going to the ER. I refuse to do that even with three different doctors telling me to go though because all they would probably do is pump me full of pain medicine and send me home. Then once that medicine wore off I would be back at square one.
I'm just trying to push through it all but it's just not fair that I have to suffer this much.
March 16th Update
So, it's a good thing that I updated when I did this last time because my world has been turned upside down since then. I went for my scheduled post-op visit with the gynecologist Monday morning and since I had still been in severe pain all weekend the doctor ordered the exact same x-rays and blood work he ordered the previous Thursday to see if there were any changes since then or anything he might had missed. He looked at the tests during his lunch and I saw the doctor that afternoon but during our waiting time I started vomiting. Everything looked okay in the x-rays/labs but since I had also started vomiting the gynecologist felt it was probably time to just admit me to the hospital for a couple of nights to allow myself to get rehydrated over the hump I was in. Well things changed dramatically once he admitted me and showed my x-rays to a surgeon who just from looking at my x-rays believed I had a whole in my bowel and free air in my belly which would surgicallyneed to be removed. Sorry, Im getting too tired but I will try to finish this sometime tomorrow but until then just know that I've been admitted to Central Baptist and will be here until at least Monday.
March 20th Update
So long story short, I just got home from a six day stay at Central Baptist hospital recovering from major abdominal surgery. I ended up having surgery Monday night where they went through everything in my abdominal cavity inch by inch but found nothing really wrong besides the free air. The doctors aren't sure why the air was there but it's gone now and even though the recovery from surgery has been and continues to be quite hard I feel better than I did before surgery.
March 25th Update
Still recovering from surgery, it's getting better and easier with less pain but it's still slow going. I've been able to walk quite a bit the last two days without too much of a problem and was able to cut back quite back on the pain medicine I am taking. Last night I had just made the comment that I had started to feel halfway normal again but I think I spoke too soon. Around the time I was trying to go to sleep I started vomiting and that continued for an hour and the retching made the pain from my incision start up again so constant cycle continues. I'll be happy if I get at least a couple hours of sleep tonight and I'm just glad that I don't have anything I have to do in the couple of days.
So from here I go for my post-op visit with the surgeon and will finally get all of these staples out of my stomach! Then I see the motility specialist at UofL on Wednesday to see if he has figured out where we go from here. Last time I went there he didn't want to do anything until we knew one way or the other if I had endometriosis and I saw a pain management doctor since that was the biggest problem I was dealing with at that time. I saw that doctor but am still waiting on Humana to decide one way or the other whether they are going to let him do any procedures or injections because oral meds are doing too much. Now though the nausea and vomiting have become much more difficult to live with than the pain so I'm hoping he will have some ideas but we will see Wednesday.
Next week is just a very busy week because we're having a yard sale on Friday and Saturday to help raise money to pay all of these medical bills. If anyone does not have the information about the yard sale and would like it please send me an email. I will try to update this a little more often too.
So from here I go for my post-op visit with the surgeon and will finally get all of these staples out of my stomach! Then I see the motility specialist at UofL on Wednesday to see if he has figured out where we go from here. Last time I went there he didn't want to do anything until we knew one way or the other if I had endometriosis and I saw a pain management doctor since that was the biggest problem I was dealing with at that time. I saw that doctor but am still waiting on Humana to decide one way or the other whether they are going to let him do any procedures or injections because oral meds are doing too much. Now though the nausea and vomiting have become much more difficult to live with than the pain so I'm hoping he will have some ideas but we will see Wednesday.
Next week is just a very busy week because we're having a yard sale on Friday and Saturday to help raise money to pay all of these medical bills. If anyone does not have the information about the yard sale and would like it please send me an email. I will try to update this a little more often too.
March 30th Update
So we are back at square one with my health problems. The specialist I've been seeing is leaving UofL in May to go to Indy this fall (taking the summer off in between to spend with his kids) and even though he will still be at UofL for another two months he has pretty well already checked out. He was not happy that I had those surgeries even though he was the one that suggested that I have the first one because he thought if I did have endometriosis it could be adding to my GI problems. He said that he doesn't believe that the pacemaker will work for me at all so he said we aren't going down that road again. For the last week I've been vomiting either really late at night or very early in the morning so I've been lucky to get any sleep at all which just makes things worse because not getting enough sleep is my number one trigger. His suggestion to this was to put a port in me and put me on home health until further notice. I would not agree to this because I do not want a port and I had home health for an entire month several months ago and it didn't help at all. Since I naturally drink so much water right now I'm am to keep up with the fluids I'm losing from the vomiting. His only other solution was to take domperidone which I took for several months last fall and it did nothing. Since I turned down both of his options he told me that he didn't know what else he could offer me so even though originally we had planned on following him to his new practice I think we are going to try to see if I can get in to see a different motility specialist. The problem with that is the waitlist for those doctors are very long and we are going to have to travel much further. Since that's really our only option at this point that's what we will be working on even though we really can't afford to do all of that traveling. All I know is this stuff is getting really old, I'm getting worse, and I really wish I could have my life back.......
April 5th Update
Had a really good day yesterday! The constant relentless nausea was gone for most of the day even without having to take medication for it and I can't tell you the last time that happened! I was able to eat and go to the bathroom normally. I also had a ton of energy which I almost didn't know what to do with it all since I'm so used to being tired all of the time. I actually felt normal for a change! It didn't last because I got really nauseous late last night and I'm little nauseous today but still it's an improvement on how I normally feel. Hopefully it will stick around because I could really get used to this.
April 11th Update
Some the roller coaster that is my life with a chronic medical condition continues. After having such a great week last week things have dramatically changed for the worse. During the last two days I've been extremely tired, running a fever, very nauseous, a bad headache, in horrible pain, and not been able to eat any solid foods without throwing it back up. Luckily my schedule isn't packed this week so I can just chill out and rest until I get feeling better. It's just difficult to go back to this life when I got a taste of what a normal life is like last week.
April 12th Update
Still going through a flare-up that is probably worse than any flare-up I've had in months. My appetite is huge but I end up throwing up any solid foods I try to eat. Even the smallest sip or bit of food/liquid causes horrible pain and nausea. I'm so hungry and thirsty though so I keep drinking liquids and eating baby food to satisfy those desires but end up paying for it later. Even the emergency medications I keep on hand for times like these aren't really helping much so it's just kinda a waiting game until I body decides it actually wants to deal with food correctly. Until then though I'm pretty miserable and just laying around resting. I just hope things turn around soon because I really enjoyed feeling well last week.
April 17th Update
I finally seem to be getting through this last flare-up but my abdomen pain is back because I busted my surgery incision up one night when I was vomiting and retching quite hard. So besides just trying to get my strength and energy back after my flare-up I have to do twice daily very painful wound dressing changes and have pretty strict restrictions when it comes to exercising, moving around, and lifting. At this point I'm eating but my appetite has yet to come back so I'm not exactly eating the best but it's still better than not eating at all. Somehow I haven't lost any weight which is kind of a good thing even though I don't just understand it. I'm hanging in there but I'm still not out of the woods with this flare up yet.
April 23th Update
Like I need more stress in my life right now but on my way home today someone hit my car while I was sitting at an intersection. I'm okay, just shuck up. It was over something so silly too. Traffic was backed up so even though the light was green I couldn't go any where without hanging out in the intersection. The people who hit me got impatience and tried to go around me to make it through ...the light but instead took my driver's side bumper and stuff out. Luckily a policeman was going the other direction and could settle these people down because they were sure crazy! I went to the chiropractor afterwards because I was getting stiff and found out that I pinched two nerves in my neck though. It's no fun at all but like the chiropractor said I know will be able to get two massages a week for free along with the chiropractic stuff. I am pretty sore tonight and was told by the chiropractor that I probably will be in quite a bit of pain this weekend but after that it should get better. It's really not what I needed now but it could have been a lot worse.
April 26th Update
Feeling pretty yucky today but wanted to update this quickly before I forgot to since there's a lot to update everyone about. There's really nothing new to report in the digestive system issues but there's quite a bit to report on other fronts.
I saw an attorney about my Social Security disability case yesterday and didn't really get good news. He believes I have a case but because of my age I haven't worked long enough to have paid into the system enough to get much if anything from social security disability but I may be able to get SSI and a medical card which would be better than nothing since right now I'm on COBRA but it's only good for 15 months. So I'm going to work now on getting my doctor's to fill out questionnaires he gave me. If I can get them in fast enough I may not even have to go through a hearing but if I do he is all willing to help me anyway possible even though he won't be getting paid anything from it since I most likely won't get any backpay.
Also, in the last two days I've found out that I have received financial assistance for several of my medical bills so I won't have to end up paying around $2000 worth of those bills! I still haven't heard if I will get any help by my hosptial bill but I should know something by Friday. Other than that I only owe about $400 in medical bills which is manageable so I can't complain right now.
An update on my car accident. My mom took my car to get the damage documented for the insurance company and to get an estimate. The estimate was over $1000 so we are going to wait to get it fixed until the insurance company is able to get the police report and contact the other person's insurance company since our deductible is $1000. That should be totally waived but we have to wait until the insurance company can get all of the information they need and all. Also, all of my medical expenses will be paid for from the accident (right now it's mainly chiropractor visits) up to $10,000 plus paying me for my mileage going to and from those visits.
I saw an attorney about my Social Security disability case yesterday and didn't really get good news. He believes I have a case but because of my age I haven't worked long enough to have paid into the system enough to get much if anything from social security disability but I may be able to get SSI and a medical card which would be better than nothing since right now I'm on COBRA but it's only good for 15 months. So I'm going to work now on getting my doctor's to fill out questionnaires he gave me. If I can get them in fast enough I may not even have to go through a hearing but if I do he is all willing to help me anyway possible even though he won't be getting paid anything from it since I most likely won't get any backpay.
Also, in the last two days I've found out that I have received financial assistance for several of my medical bills so I won't have to end up paying around $2000 worth of those bills! I still haven't heard if I will get any help by my hosptial bill but I should know something by Friday. Other than that I only owe about $400 in medical bills which is manageable so I can't complain right now.
An update on my car accident. My mom took my car to get the damage documented for the insurance company and to get an estimate. The estimate was over $1000 so we are going to wait to get it fixed until the insurance company is able to get the police report and contact the other person's insurance company since our deductible is $1000. That should be totally waived but we have to wait until the insurance company can get all of the information they need and all. Also, all of my medical expenses will be paid for from the accident (right now it's mainly chiropractor visits) up to $10,000 plus paying me for my mileage going to and from those visits.
May 2nd Update
So I went back to see my local GI today for the first since August when I started seeing the specialist at the University of Louisville. The appointment went great and it was so nice to have her taking care of me again since she does everything she can think of to help me with living as much of a normal life as possible while the U of L specialist seemed to want the total opposite. When now have a new game plan like I have been asking for for months. Dr. Martin, my local GI is going to do a procedure next Tuesday where she is going to inject botox into the sphincter between my stomach and small intestine and I should see improvement if any within a couple of weeks if not sooner. The only real side effects are from the actual procedure it's self but even they are minimal. It normally last 6 months but it has lasted much longer than in some people. The way it works is the botox relaxes the sphincter between the two organs so that it is easier for food to flow out of the stomach so it could help both with the reflux issues I have along with the pain/nausea/vomiting issues I also have. A few days after the procedure I will also be starting back on a low dose pf domperidone in the hopes that the combination of the two will help. I go back to see my GI two weeks afterwards and by that time we should know if it worked or not and can figure out a new game plan then if needed.
The last several times I went to see the doctor in Louisville I left discouraged since I just seemed to be getting worse and I really wasn't getting any help from him. Now with my local GI I am feeling encouraged because I know she won't give up even if she doesn't know exactly how to help me.
I also had to end up getting fluids today at the doctor's office because of all of the flair ups I've had lately I've not been able to drink enough to make up for the vomiting I've been doing. My heart rate and blood pressure where pretty high today there and I was running a temp again which is not good but I have not lost anymore weight so that's a good thing. Even though we aren't sure if this is going to work it still is a step in the right direction and it's sure better than the just lets watch things.
The last several times I went to see the doctor in Louisville I left discouraged since I just seemed to be getting worse and I really wasn't getting any help from him. Now with my local GI I am feeling encouraged because I know she won't give up even if she doesn't know exactly how to help me.
I also had to end up getting fluids today at the doctor's office because of all of the flair ups I've had lately I've not been able to drink enough to make up for the vomiting I've been doing. My heart rate and blood pressure where pretty high today there and I was running a temp again which is not good but I have not lost anymore weight so that's a good thing. Even though we aren't sure if this is going to work it still is a step in the right direction and it's sure better than the just lets watch things.
May 12th Update
I'm exhausted so this is going to be a short update. It's been two days since I had the procedure where they injected Botox into my stomach. I wouldn't say this procedure was a piece of cake but it was easier than my last several ones. I'm still really tired, in some pain, and have a total lack of appetite but all of those issues should resolve with time. I start back on domperidone today and am also starting on a medication to help with the pain from the procedure which I shouldn't have to be on for more than a week if that. Time will only tell if the Botox is going to help me or not but my doctor is fairly confident that the combination of the two should help me quite a bit. Until then though it's life as normal which right now consists of a lot of rest, trying to eat what/when I can, etc.
May 14th Update
I think I mentioned that I had an appointment coming up with a pain management doctor- Dr. William Witt. That appointment was yesterday and he has suggested waiting to do anything for the pain for a couple months until I am fully recovered from surgery and the botox has had time to do it's thing. If I am still dealing with pain issues then he said my best real option is this: page=HCP_Overview&navRelId=1000.1003&method=DevDetailHCP&id=10068931&pageDisclaimer=Disclaimer.ProductPage
Other than that I don't have much to new to report. I haven't noticed a difference yet from the botox but it could be a month or two until I do. My appetite has yet to really come back and I've having to push the liquids to keep from having to get fluids on a weekly basis. I've gained quite a bit of weight in the last two weeks without even eating that much but my doctor said it isn't anything to worried about.
Other than that I don't have much to new to report. I haven't noticed a difference yet from the botox but it could be a month or two until I do. My appetite has yet to really come back and I've having to push the liquids to keep from having to get fluids on a weekly basis. I've gained quite a bit of weight in the last two weeks without even eating that much but my doctor said it isn't anything to worried about.
May 18th Update
I'm really not feeling so hot today so I hope this makes sense. The last several days have been very difficult with lots of vomiting at night, not much sleep, and horrible abdominal pain. I was able to get out for a little while yesterday but other than that I've pretty well been in bed since Sunday. All because I overdid it last week so that's why I've tried to have a much lower key week this week so I can get everything settled back down.
Also I got the results from the biopsies that my doctor took last week while she was in there with a scope to inject the botox. The biopsies showed inflammation of esophagus which most likely has been caused from acid reflux. There was no inflammation of my esophagus this time last year though so the biopsies showed that my reflux has gotten worse and is now causing permanent damage. All they can do for it though is keep me on meds for the reflux and keep it an eye on it which most likely means having a scope done at least once a year.
Also I got the results from the biopsies that my doctor took last week while she was in there with a scope to inject the botox. The biopsies showed inflammation of esophagus which most likely has been caused from acid reflux. There was no inflammation of my esophagus this time last year though so the biopsies showed that my reflux has gotten worse and is now causing permanent damage. All they can do for it though is keep me on meds for the reflux and keep it an eye on it which most likely means having a scope done at least once a year.
June 3th Update
So it's been a while since I updated this but I haven't been feeling very well. I've been struggling daily to eat and keep down solid foods, drink enough, and just even get out of bed. So far the Botox and domperidone isn't doing anything so I'm hoping my GI has some new ideas when I see her on Monday. We figured out this week that part of the reason for all of the recent flare ups is my digestive system just can't handle the ups and downs of my hormones but the only way to fix that issue is to stay on birth control pills but even with that it could take 3-6 months before they level out. The good thing came out of that is my gynecologist actually talked directed to my gastroenterologist on the phone so they could be on the same page and figure out a plan together. Pain has become an issue again and nothing has really helped for it here lately. My hope is my GI might have some suggestions for this too but if not I'll just have to wait until I go back to the pain specialist in July (due to the recent surgery and the Botox procedure he wanted to give my body time to recover from those before he did anything new). In the last several weeks I've also had numerous people question me on whether I am making all of this up, doing it for attention, etc. which is like someone stabbing me in the gut every time. I wouldn't wish this on anyone and why in the world would I wish for a life like this when my friends have a career, are or close to getting married, buying their first home, having kids, etc. That's been tough especially since I've been sick so much in the last several weeks and pretty much only leaving the house to go to the doctor. There's not much else to report and I'm exhausted so this is all of the updating that's going to happen tonight.
June 12th Update
I've went downhill quite a bit in the last month so I haven't been on here very much. I'm struggling just to eat and drink because even a sip of water causes horrible pain and nausea plus my normal go to nausea med phenergan (which has been my go to medication for the nausea and vomiting since none of the other meds work for me) is no longer working. I saw my GI doc last week and she doesn't believe the Botox worked and has told me to stop the domperidone since it doesn't seem to be doing anything either. I had another another gastric emptying scan done on Friday to see if there has been any change in my motility since the last one was done in the fall. She suggested trying to eat healthy when I do eat and push the fluids but she isn’t too concerned over my not being able to eat or drink much at all since I’m actually gaining weight than losing it.
She is trying cymbalta now to see if it will help any with the nausea and pain until I go back to see the pain specialist in July (he didn't want to do anything until then to make sure I was totally over the surgeries I had in March and to give the Botox time to work if it was going to).
We have also figured out that my digestive system is going haywire every time I have my period (because it just can't handle the normal ups of downs of women's hormones). So my GI talked to my GYN about stopping my period totally but he would only agree with cutting it down to 4 times a year and has me on birth control pills but it's expected to take 3-6 months on it before my hormones will even out. I saw my GYN on Thursday and he ran tests and figured out that my reproductive system is totally fine so things in that area should even out with time.
For some reason I'm also running a pretty constant fever that ranges anywhere from 99 to 101 but my blood work doesn't show any signs of infection. Day to day functioning is becoming difficult much less exercising or getting out with friends now because between not eating or drinking much, not sleeping very much from the pain and the vomiting I'm just getting really exhausted and weak. It's just getting quite frustrating because I don't want to spend my summer lying around the house because I feel too sick to do anything.
She is trying cymbalta now to see if it will help any with the nausea and pain until I go back to see the pain specialist in July (he didn't want to do anything until then to make sure I was totally over the surgeries I had in March and to give the Botox time to work if it was going to).
We have also figured out that my digestive system is going haywire every time I have my period (because it just can't handle the normal ups of downs of women's hormones). So my GI talked to my GYN about stopping my period totally but he would only agree with cutting it down to 4 times a year and has me on birth control pills but it's expected to take 3-6 months on it before my hormones will even out. I saw my GYN on Thursday and he ran tests and figured out that my reproductive system is totally fine so things in that area should even out with time.
For some reason I'm also running a pretty constant fever that ranges anywhere from 99 to 101 but my blood work doesn't show any signs of infection. Day to day functioning is becoming difficult much less exercising or getting out with friends now because between not eating or drinking much, not sleeping very much from the pain and the vomiting I'm just getting really exhausted and weak. It's just getting quite frustrating because I don't want to spend my summer lying around the house because I feel too sick to do anything.
June 13th Update
The results from the tests that I had done on Friday came back today. They showed I had moderate gastroparesis (which we already knew) but once my gastroenterologist looks at the results she may be able to tell me more since all her nurse could tell me was what was written in the report from the radiologist. The results also showed protein in my urine which is to be expected since I'm not eating much. What that means is my body is automatically is breaking down my muscle for nutrients and energy, which isn't a good thing. My doctor is on vacation right now but will decide what to do about it if anything when she gets back.
June 17th Update
Not much has changed this week- It's still a daily struggle to eat, drink, and sleep. My pain has been horrible this week even with me pulling out all of the stops I have access to. I have a call into my doctor now so they are going to ask her about it when she gets back in the office. My fever, heart rate, and blood pressure all are staying high still but I still am not losing weight which is a good thing. I've pretty much spent the entire week in the bed because I've felt too bad and too weak and tired to do anything else.
I kinda got the results back from the tests I had done last week. My doctor is currently on vacation so all her nurse could tell me was what was written on the report but I should get more information about the exact results once my doctor looks at them. The gastric emptying scan showed that I have moderate gastroparesis which we already knew and there is now protein in my urine which means my body is actually breaking down my muscles for nutrients and energy (my doctor's nurse said it is to be expected since I'm not eating a lot and there wasn't a terrible amount of it but it is still the beginning of malnourishment). Again, I don't know what if anything my doctor will want to do about this.
I kinda got the results back from the tests I had done last week. My doctor is currently on vacation so all her nurse could tell me was what was written on the report but I should get more information about the exact results once my doctor looks at them. The gastric emptying scan showed that I have moderate gastroparesis which we already knew and there is now protein in my urine which means my body is actually breaking down my muscles for nutrients and energy (my doctor's nurse said it is to be expected since I'm not eating a lot and there wasn't a terrible amount of it but it is still the beginning of malnourishment). Again, I don't know what if anything my doctor will want to do about this.
June 27th Update
Not a lot has changed since my last update. I'm still struggling with eating, drinking, sleeping, vomiting, and abdominal pain. My GI is thinking now that my GI issues are being caused by anxiety but I think that the GI issues are causing the anxiety. No one really know though.
My health psychologist has a student working in her office right now that is doing biofeedback with her patients and we are going to try that starting next Tuesday. I go back to see Dr. Witt (pain specialist) next week where we are most likely going to get the spinal cord simulator process started. I am also going to a new family medicine doctor (Dr. Carol Mitchell) at the end of this week since my currently is never in the office and does not return phone calls. She is my mom and aunt's current doctor and I have seen her a couple times awhile back since she used to work out of the same office as him plus it can't hurt to get a new set of eyes looking at things.
Yard sales are going well, they are a lot of work but we have been quite successful with them.
My health psychologist has a student working in her office right now that is doing biofeedback with her patients and we are going to try that starting next Tuesday. I go back to see Dr. Witt (pain specialist) next week where we are most likely going to get the spinal cord simulator process started. I am also going to a new family medicine doctor (Dr. Carol Mitchell) at the end of this week since my currently is never in the office and does not return phone calls. She is my mom and aunt's current doctor and I have seen her a couple times awhile back since she used to work out of the same office as him plus it can't hurt to get a new set of eyes looking at things.
Yard sales are going well, they are a lot of work but we have been quite successful with them.
June 30th Update
I saw my new family doctor this morning and the appointment went great. Basically she took a really good history from me, asking me about different things we have and have not tried, did a physical exam, and told me that her first priority was to get me comfortable then we would start tackling the other issues. She seemed to believe though if we could break this pain cycle then my body wouldn't be as stressed so my blood pressure, heart rate, and fever will probably go away. Also she believes that I will probably be able to get more sleep plus we are hoping eating and drinking won't cause as many problems. So she gave me some medication for the pain to take every four hours until the pain cycle breaks and told me to go straight to bed to get some rest. It feels so great to have a doctor that just gets it! She also had me sign a narcotics contract with her to support me next time I have to go to the ER. I'm so glad that I finally decided to change family doctors and I wish I had done it a long time ago!
July 12th Update
Not much has really changed health wise since I last updated this website. I'm still vomiting almost daily, running a fever, having trouble with getting my heart rate and blood pressure to become stable, and am really struggling with pretty severe pain. I still haven't lost much if any weight which is a good thing since my GI said that that fact tells her that my body has figured out a way to work with what I give it.
Now to an update on all of my recent doctor's appointments. It feels like that's all I've been doing for the last month! I had my first biofeedback session last week and while it was interesting I don't see how it's going to help any with my problems but it's free so I'm willing to give it a few more sessions.I saw the pain specialist again last week and we are going ahead with the spinal cord simulator trial process as soon as they can get it approved by my insurance. Then I saw my gynecologist yesterday where he took me off the birth control pills since they were actually causing more side effects then they were helping. He also released me from having to see him for a year unless there are issues.
Now to an update on all of my recent doctor's appointments. It feels like that's all I've been doing for the last month! I had my first biofeedback session last week and while it was interesting I don't see how it's going to help any with my problems but it's free so I'm willing to give it a few more sessions.I saw the pain specialist again last week and we are going ahead with the spinal cord simulator trial process as soon as they can get it approved by my insurance. Then I saw my gynecologist yesterday where he took me off the birth control pills since they were actually causing more side effects then they were helping. He also released me from having to see him for a year unless there are issues.
July 13th Update
I went to the dentist today and she were amazed what good condition my teeth are in with all of the vomiting here recently. There are a few teeth they are going to be keeping an especially close eye on but nothing big. She was pretty concerned about how dry my mouth is now though but most likely that is being caused by some of medicines I'm on so I have a call into my doctor about it.
July 16th Update
Social Security has denied my disability appeal due to my age and education level so I'll have to go to a hearing to talk to a judge about it next. I'm vomiting almost every night now and that's starting me keep me from getting to sleep at a decent time again. I'm having major issues dealing with the heat though, if I'm outside longer than just to walk from the car to inside a store for example I start vomiting. My core temperature is off too because I literally have my AC on 64 degrees and 2 fans on and I'm normally still hot. I take cold showers and sleep with an ice pack on but that's normally just a short term situation. The littlest thing is wearing me out too. Also, even though I'm on pretty strong meds I'm still having pretty bad abdominal pain. All of this is getting really old. Here it is my birthday today and I was up to 4am this morning in pain and vomiting. Then when I woke up this morning I still felt horrible so it looks like my birthday this year will consist of hanging out in bed.
July 18th Update
So I thought I had found a doctor who actually gets it and had some new ideas about where we could go from here but I should have known it was too good to be true. She had gave me medicine to help take the edge off of the pain which did seem to help enough so I could halfway function but now she wants me to go off of it but isn't giving me anything to replace it with. She also told me I needed to talk to my GI doctor about where we go from here even though my GI doesn't have any new ideas and this doctor did! I hate that my good morning hasn't not stuck around because I'm making up for it this afternoon/evening with horrible pain, vomiting, a horrible headache, etc. I just wish I could catch a break because this life is getting really old quickly!!
July 25th Update
Also, I have yet to see any results from the biofeedback sessions so we are going to contunie them but try a couple new things with it to see if my body will respond to that. I had the testing done last week so now my pain specialist office can submit the spinal cord simulator to my insurance company for pre-approval. It's also a waiting game on that because as soon as it is approved I can get it done but it could take months for Humana to approve it even though my pain doctor said that it is covered 99% of time.
I went back to my GI doctor today. She is not happy with where I am right now but I'm not either so at least we are on the same page but it issue is the more things (medicines, procedures, etc.) my doctors try to help me it ends up backfiring. For some reason my body just wants to be left alone so anytime my doctor's put me on a new medication I normally get all of the side effects plus more digestive system issues. So my doctor wants to just watch things for now but did run blood tests to check on my vitamin levels and to make sure I'm not malnourished. If they come back really low she may put me on vitamins to make up with what I'm not able to get through eating. My blood pressure and heart rate has been all over the place for the last couple of weeks so I'm going to see my primary doctor in the morning to see if we can get that under control especially since the ups and downs are causing headaches and dizziness. One good thing is my weight has pretty much stayed the same since the last time I saw my GI two months ago. The idea of traveling again to see a specialist is off of the table right now since traveling always makes me sicker, it is so expensive, and my doctor is concerned about them either not being any help or even making me worse. So for right now it's just wait and see what happens....
I went back to my GI doctor today. She is not happy with where I am right now but I'm not either so at least we are on the same page but it issue is the more things (medicines, procedures, etc.) my doctors try to help me it ends up backfiring. For some reason my body just wants to be left alone so anytime my doctor's put me on a new medication I normally get all of the side effects plus more digestive system issues. So my doctor wants to just watch things for now but did run blood tests to check on my vitamin levels and to make sure I'm not malnourished. If they come back really low she may put me on vitamins to make up with what I'm not able to get through eating. My blood pressure and heart rate has been all over the place for the last couple of weeks so I'm going to see my primary doctor in the morning to see if we can get that under control especially since the ups and downs are causing headaches and dizziness. One good thing is my weight has pretty much stayed the same since the last time I saw my GI two months ago. The idea of traveling again to see a specialist is off of the table right now since traveling always makes me sicker, it is so expensive, and my doctor is concerned about them either not being any help or even making me worse. So for right now it's just wait and see what happens....
July 26th Update
So I went to see my family doctor this morning because my heart rate and blood pressure had been pretty high the last week or so even on medication for it. She got asking me questions about it and my other symptoms and asking me about the small bowel test I had at the University of Louisville back in November. That test showed that I had vagus nerve neuropathy in my small bowel but were told at that time that it wasn’t serious or anything to worry about, there were not treatments for it specifically besides what I was already doing or medications I was already taking for my stomach, and it was only an issue for my small bowel so it did not affect the rest of my body. While my family doctor told me that all was correct she also said that between that, my heat intolerance this summer, the issues with my stomach, headaches and dizziness I’ve been having, my constipation issues, and the problems with keeping my blood pressure and heart rate down even on medication for it all sounded like an issue with my autonomic nervous system (Click this link for more information about the autonomic nervous system: http://www.merckmanuals.com/home/print/sec06/ch091/ch091a.html
She said there are several tests that need to be done until she can say 100% that this is the problem so today she has ordered a tilt table test, a 24 hour urine test, a ton of blood tests, and a 24 hour heart monitor test all to be done before the end of the week. Even though she knows this is a lot of test to put me through in just a couple of day but it very important to do them when my symptoms are flared up. I’m supposed to go back to see my family doctor next Friday to go over the test results and talk about where we go from here. There is no real cure per say but symptoms can be treated and there are some different medications I can try to help control the symptoms. It’s really nice to have a doctor who is not playing games with me, is trying to help me get a better quality of life and willing to get down to the bottom of the cause of all of my symptoms. So after the tests are done and I talk to her about the results of the tests I will have more information but right now it’s great to think that we might actually know what is causing me to be this sick for the last nine years.
She said there are several tests that need to be done until she can say 100% that this is the problem so today she has ordered a tilt table test, a 24 hour urine test, a ton of blood tests, and a 24 hour heart monitor test all to be done before the end of the week. Even though she knows this is a lot of test to put me through in just a couple of day but it very important to do them when my symptoms are flared up. I’m supposed to go back to see my family doctor next Friday to go over the test results and talk about where we go from here. There is no real cure per say but symptoms can be treated and there are some different medications I can try to help control the symptoms. It’s really nice to have a doctor who is not playing games with me, is trying to help me get a better quality of life and willing to get down to the bottom of the cause of all of my symptoms. So after the tests are done and I talk to her about the results of the tests I will have more information but right now it’s great to think that we might actually know what is causing me to be this sick for the last nine years.
August 9th Update
Most of my test results came back normal besides one and that one was only borderline. My primary care doctor plans on talking to my GI doctor about that one and then getting back to me. I'm sure if them coming normal is a good or bad thing at this time....
August 11th Update
I'm not sure if it is a good thing that my doctor called me personally to let me know that I might have a rare disease called Porphyria. It is a group of disorders that result in a buildup of chemicals called porphyrins in your body. Although porphyrins are normal body chemicals, it's not normal for them to build up. The cause is usually an inherited mutation. She's never had a patient who has it in her 25 years of practicing medicine but all of my symptoms fit. The tests she ran a couple weeks ago could have showed it but only one of the tests came back abnormal but it was borderline. My doctor is not surprised at this fact because it normally doesn't show up on test results unless the tests are timed exactly right. She is planning on talking with my GI doctor about it since she has treated me for a while and set me up to see a hematologist since it's in their area of area of medicine. Dr. Mitchell, my primary care doctor is planning on talking to them before I see him/her about just trying the treatment on me because for one it can only help and that way we would know if it is this one way or the other. The treatments include mainly a series of IV infusions but nothing is going to be done besides treating my symptoms until I meet with the hematologist though. These two websites explain this well:
http://neuromuscular.wustl.edu/nother/porph.htm
http://www.mayoclinic.com/health/porphyria/DS00955
http://neuromuscular.wustl.edu/nother/porph.htm
http://www.mayoclinic.com/health/porphyria/DS00955
August 24th Update
I saw Dr. Ari (hematologist) and Dr. Ashmun (gynecologist) this morning and talked to Dr. Witt’s nurse (pain specialist). Both appointments went well besides me being miserable since a flare up started early this morning but the last two days had been amazing with little to no pain, minimal nausea and fatigue.
Dr. Ari thinks that it is unlikely that I have Porphyria but since I have all of the symptoms and it could possible that it is the issue. He gave me a lab order to get done when I am in a bad flare up between today and a month from now when I go back to see him. He’s very excited to have my interesting case and is determined to figure out what he also believes is the underlying issue even if it isn’t Porphyria or a blood issue.
Dr. Ashmun thinks that Dr. Youlikis (previous gynecologist) didn’t have success in helping me because didn’t give either birth control method enough time and tried to skip necessary steps. She said it takes at least 4 months to know if it will help and for my body to get used to it. She wants to avoid the GI system so we are trying the nuvaring again but with different directions then Dr. Youlikis had given me. Dr. Ashmun said she will try to remember to run my case by her husband (Dr. Matt Ashmun at Lexington Clinic) since he is a gastroenterologist before I see her next in December to see if he might have any other ideas for Dr. Martin (gastroenterologist).
Humana denied the approval for the spinal cord simulator and since Dr. Witt dotted his I’s and crossed his T’s before he sent it in he doesn’t believe that appealing their decision. I asked his nurse to ask him about other options and/or a refer to someone who might have new ideas for pain management and she's supposed to call me back after she talks to him.
Dr. Ari thinks that it is unlikely that I have Porphyria but since I have all of the symptoms and it could possible that it is the issue. He gave me a lab order to get done when I am in a bad flare up between today and a month from now when I go back to see him. He’s very excited to have my interesting case and is determined to figure out what he also believes is the underlying issue even if it isn’t Porphyria or a blood issue.
Dr. Ashmun thinks that Dr. Youlikis (previous gynecologist) didn’t have success in helping me because didn’t give either birth control method enough time and tried to skip necessary steps. She said it takes at least 4 months to know if it will help and for my body to get used to it. She wants to avoid the GI system so we are trying the nuvaring again but with different directions then Dr. Youlikis had given me. Dr. Ashmun said she will try to remember to run my case by her husband (Dr. Matt Ashmun at Lexington Clinic) since he is a gastroenterologist before I see her next in December to see if he might have any other ideas for Dr. Martin (gastroenterologist).
Humana denied the approval for the spinal cord simulator and since Dr. Witt dotted his I’s and crossed his T’s before he sent it in he doesn’t believe that appealing their decision. I asked his nurse to ask him about other options and/or a refer to someone who might have new ideas for pain management and she's supposed to call me back after she talks to him.
August 29th Update
My appetite has finally came back and the nausea/vomiting has settled down some but the severe pain has not went anywhere if anything it has gotten worse. It has been set up where I can go have the porphyria testing at Central Baptist hospital around the clock so it won't be an issue to get the testing done at the right time due to the lab not being open especially since I normally have the toughest time during nights and weekends. Other then that it's still a waiting game.
September 14th Update
So, we are back to square one again. Tests have confirmed that I do not have Porphyria now. My hematologist isn't in the office today and wants to do some research before calling me tomorrow to discuss where we go from here. Other than waiting on the test results to come back I have struggling quite a lot in the last month. I'm in the worse flare up I've had since December of last year. Severe abdominal pain, nausea, vomiting, exhaustion, dizziness, daily migraines, blood pressure/heart rate issues, weakness, insomnia and fatigue have became my normal. It sucks and is getting really old.
October 8th Update
It's been a crazy month between a million doctor's appointments, our last yard sale of the season, having to spend several days hooked up to an IV to get fluids due to dehydration, lots of vomiting and severe pain, and not much sleep.
My GI doctor is happy with my eating habits, and my weight (which continues to go up even with a lot of vomiting and not eating much). She isn't happy with all of the vomiting but we are already doing everything we can to stop it so it's really just a waiting game and keeping an eye on the hydration levels. My blood pressure, temperature and heart rate is finally starting to set down again so that's a good thing plus I'm not staying so hot like I was before. I am still not malnourished and I haven't got car sick in several weeks which is great since about a month ago everything I was in a car I would get really dizzy, nauseous, and vomiting sometimes so it was difficult to get out of the house to do anything. The weather has cooled down so I've been able to get outside to exercise which has been great!
I saw my primary care doctor yesterday and she has a new plan she wants to try. She decrease the medication I'm on to settle down my heart to once day to hopefully stop my blood pressure from dropping down as low, increased the medication I take for the depression that has become a problem in the last month or two, added a medication to hopefully help my migraines and settle the pain down some so I don’t need to take pain meds as often or not at all if it helps, a nasal spray twice a day for my head congestion which she’s thinking is partly causing some of the migraines and also causing some of the vomiting/nausea issues with all of that draining into my stomach, decreased once nausea med, and wants me to increase a different one since it has less side effects to decrease I take in the hopes of helping up with the dry mouth issue.
She is also going to refer me to neurologist for autonomic nervous system testing.The pain specialist I have seen in the past is now back in his office part time after being out of the office for several month because he had to have major surgery.
My GI doctor is happy with my eating habits, and my weight (which continues to go up even with a lot of vomiting and not eating much). She isn't happy with all of the vomiting but we are already doing everything we can to stop it so it's really just a waiting game and keeping an eye on the hydration levels. My blood pressure, temperature and heart rate is finally starting to set down again so that's a good thing plus I'm not staying so hot like I was before. I am still not malnourished and I haven't got car sick in several weeks which is great since about a month ago everything I was in a car I would get really dizzy, nauseous, and vomiting sometimes so it was difficult to get out of the house to do anything. The weather has cooled down so I've been able to get outside to exercise which has been great!
I saw my primary care doctor yesterday and she has a new plan she wants to try. She decrease the medication I'm on to settle down my heart to once day to hopefully stop my blood pressure from dropping down as low, increased the medication I take for the depression that has become a problem in the last month or two, added a medication to hopefully help my migraines and settle the pain down some so I don’t need to take pain meds as often or not at all if it helps, a nasal spray twice a day for my head congestion which she’s thinking is partly causing some of the migraines and also causing some of the vomiting/nausea issues with all of that draining into my stomach, decreased once nausea med, and wants me to increase a different one since it has less side effects to decrease I take in the hopes of helping up with the dry mouth issue.
She is also going to refer me to neurologist for autonomic nervous system testing.The pain specialist I have seen in the past is now back in his office part time after being out of the office for several month because he had to have major surgery.
October 15th Update
The brain fog and fatigue has lifted some in the last couple of weeks which has allowed me to start exercising again, see some friends, to cross items off of my to do list and run some errands. It has been really nice to get back to get back to "life", enjoy eating sometimes, and enjoy this wonderful fall weather. I also was able to take my first pilates/yoga class in a year which was amazing! I still have my bad days but mentally they aren't as difficult because I'm able to enjoy the better days.
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