Disability Hearing and UK Urologist

My disability hearing was yesterday. It went well, I was confident with my answers to the judge's questions, felt very prepared and I didn't get emotional like I sometimes do out of frustration when talking about my health problems and how it's taken most of my quality of life away. The judge seemed to listen to me, believe what I was saying and really understand how all of my health problems would make it impossible for me to work. My lawyer is also very confident and said he's at least 90% sure that I will win my disability case. I won't know one way or the other until I get a letter in the mail from the Social Security office sometime in the next couple of months. Even though I don't really know if I won or not, it's a relieve for me to have that over with so I can relax a little. 


Today I went to see Dr. Katie Ballert, a urologist at UK that is much more specialized then the urologist I have been seeing because that urologist knew I needed more testing done then she can do.   I really like this urologist. She listens well, is down to earth, doesn't try to scare her patients but also tells it like it, isn't intimidating like some doctors can be, doesn't play games but is medication/procedure/surgery happy, and I feel comfortable with her which is a good thing because the testing that I need done is pretty invasive. She believes my bladder problems are either from one of two different causes: 1. neurological- which falls in line with the what my primary care doctor is thinking or 2. intentional damage from the open abdominal surgery I had to have last March. I have an appointment with a nervous system specialist at UK in May which should hopefully be able to determine one way or the other if the nervous system is the cause of my bladder problems or not. The urologist is going to do her testing after I see the neurologist so that she can have all of the information to come up with a plan once she has the results of the testing she will be doing. Until then though she put me on a muscle relaxer because the muscles around my kidneys and bladder are extremely tight and so muscle relaxers can really be helpful with that which would settle down the symptoms until they can figure out what the problem is truly is. Also, I will be trying pelvic floor physical therapy since that normally helps with symptom control both in the short and long term. 

March 5th Update

Went back to the ENT this morning for my last post-op visit and to get a tube put in my ear. It ended up being only a post-op visit because my eustachian tubes have become unblocked most of the way since the inflammation has started going down from my sinus surgery. The ENT said from what my sinus look like now you would never know that I recently had sinus surgery or even had sinus problems. So for now I'm able to avoid ear tubes and physical therapy for my balance so unless I take a turn for the worse or get an infection I don't have to go back to see him until July. He said I should continue to get better as time passes with regards to my balance, ear pain/pressure, sinus pressure/pain, sinus headaches, sinus drainage, and dizziness. 

Not much else has changed with my health. Still vomiting on a consistent basis but have been able to keep myself pretty hydrated so I've only had to get IV fluids once in the last 5 months. My primary care doctor put me on a medication that is helping me sleep better and might even help with some of my nausea. Eating is still day to day but I haven't lost anymore weight which is a good thing. I'm still having kidney and bladder problems when it comes to urinating but I will be starting urgent pc therapy (http://www.uroplasty.com/patients/urgentpc) once a week for the next 12 weeks as soon as it gets approved by my health insurance company. I went off of the medication for migraines because even at a pretty high dose it wasn't helping a lot but since I went off of it my migraines have got worse. My GYN thinks my issues when it comes to my issues in that area actually are being caused by my GI system and putting me on medications seems to make it worse and really the only option that would help would be a hysterectomy which due to my age isn't an option. 

Otherwise I've been trying to prep for my disability hearing at the end of the month and our yard sales which also will begin at the end of this month. I'm really trying to work smarter and not harder this year since we have some experience and my medical bills continue to add up (I've already paid over $6,000 since the beginning of the year) and my endurance isn't nearly as high as it was this time last year. Please email me at craigslist_seller_tiffany@yahoo.com if you want more information about our yard sales and/or have items that you would like to donate. Thank you ahead of time for this and all of your good thoughts/prayers.

Doctor Appointment after Doctor Appointment after Doctor Appointment.......

He's a long much needed update. Have had a ton of doctor's appointments lately but nothing has changed dramatically. Exhaustion has set in between being up several nights vomiting all night in the last couple of weeks and not really sleeping good the other nights so I apologize ahead of time if this post doesn't make any sense.

I had my second post-op appointment with Dr. Shashy (ENT) this Monday.  He said I'm healing well and wants me to start balance physical therapy within the next 2 weeks. He will be putting a tube in my right ear on the 5th to see if that helps also helps with my balance, ear pain, and ear drainage problems. If it does help on my right ear he will do the left two weeks later.

I saw Dr. Mitchell (my PCP) last Wednesday. She's pretty concerned because my depression and anxiety has got a whole lot worse lately in part to do with the fact that I'm having difficulty taking and keeping pills on a regular basis and my quality of life is getting less and less as I am getting sicker and sicker. I broke down in her office today mostly due to exhaustion and frustration but also from a combination of pain, constant horrible nausea, multiple nights spent vomiting, all of the doctor's appointments I have had, disability issues/health insurance issues, and the difficulty all of this has made to my quality of life and my life outside of being sick. She's going to try to get me on some other meds for migraines, sleep, anxiety or depression including trying the remeron again but is going to do some researching  on other ways I can take them besides orally and will call me once she figures all of that out. Dr. Mitchell's really wanting me to take a non-graded class somewhere in something I'm interested in along with volunteering or something like that but my problem with that is I feel like I'm struggling to what I am doing now and if I'm going to do something I have always want to do it right with 100% of my energy towards it and I don't feel like I can do that right now. I'm in the process of trying to find a volunteer position at one of the children's hospital which will combine my personal health/medical knowledge and my love/knowledge of working with kids.

I also saw Dr. Martin last Monday. I was pretty dehydrated so I ended my 4 month no IV fluids streak. I had only lost a couple of pounds since I saw her 2 months ago but my blood work is starting to some signs of malnourished but since I'm still officially over weight and am eating some most days. She did tell me that I did need to start forcing myself to eat again even if I don't have an appetite.

 All hell's broke loose in the week from my period coming then stopping and then coming again which didn't give me much relief at all because normally I'm okay after the day before and the first two days. This month though I got through those three days pretty much  taking demerol and midol around the clock and eating/drinking as much stuff with caffeine in it as I could stand/keep down. Then it stopped for a couple days and the cycle started back again. Dr. Ashmun (GYN) is supposed to be calling Dr. Martin to try to figure out a plan C since Plan A (beyaz and nuvaring-each tried for 4 months) didn't work, actually made me worse and Plan B (Lysteda) which is supposed to make your periods extremely light so Dr. Ashmun thought if my period was very light my cramps wouldn't be nearly as bad and could maybe avoid my period triggering a gastroparesis flare up. Dr. Ashmun is also supposed to run my case by her husband to see if he could think of anything that might be helpful since her husband is a GI with Lexington Clinic. 

I saw Dr. Windisch (urologist) this morning. She has tried two different medications and neither are helping long term for my bladder problems so she believes we are still missing something with her guess being a nerve issue that's causing all of the urological issues. So her office set up a consult for me at the end of March with Dr. Katie Ballert who is also a urologist but is one that specializes in nerve and urology problems. Dr. Windisch wants Dr. Ballert to run more specialized test to figure if this problem is or is not being caused by nerve problems. Depending on what those tests show she's go down one of two different roads- pelvic floor physical therapy/biofeedback or urgent pc treatments. She also suggested a bladder pacemaker like device but I'm not comfortable with that option so Dr. Windisch pulled it off of the table for the time being. 

I think that's all and I hope it makes sense. Yard sale prep has already started for the season, trying to work smarter then harder this year since we have experience. I will tentatively realize the dates soon. Again I appreciate all the positive thoughts and prayers, while physically they don't make me feel better- mentally they do since the fact that I have such a huge loving support system is amazing and I don't think I could get through all of this as well as I have without all of every one's support. 

Time to Catch Everyone Up on How Things Have Been in the Last Three Weeks

There's been a lot going on health/medical wise for me in the last couple of weeks so this is kinda going to be a catch-up post.


I saw a neurologist last week and was pretty much told that I have one test showing some nervous system/nerve damage while a different test showing the total opposite. I now have an appointment with a nerve specialist at UK in May that may or may not be helpful in figuring out if nervous system problems can be ruled in or out. 


Recovery from the sinus surgery I had three weeks ago has been pretty easy. It fixed the problem with my sinuses not draining like they should and should greatly decrease the amount of sinus infections I get on a regular basis but not help with the vertigo and ear pain problems. I have had an increase in energy since surgery though so that's been a welcome effect of having the surgery.


I had balance testing done today which came back normal. In some ways that's a good thing but in other ways it's not since I we still don't know what is causing the vertigo but the doctor who ran the balance testing said that even with or without knowing what's causing it most people have improvement of symptoms after trying vestibular rehabilitation. So, that's my next step on this issue and will starting that as soon as the physical therapy company calls me to set it all up.


I'm doing pretty good when it comes to eating and exercising here lately but brain fog has become a big issue. I've messed up a couple of appointments in the last couple of weeks and I've had to start get people to check over things for me which sucks but it's what needs to happen right now.   My chronic abdominal pain has also settled down some too which has been nice.

I think that's everything but I see my main two doctors next week so there will probably be another update sometime next week.

Post-Op Sinus Surgery

I had balloon sinusplasty sinus surgery (http://www.balloonsinuplasty.com/) last Wednesday and am doing well. While recovery was not and is still not any fun it's not been as bad as I thought it might be. The swelling and bruising has gone away now, most of the bleeding has stopped, and the pain has started to decrease although it hasn't been too horrible considering what I was expecting. The post-op nurses told me that the first thing I told them was that I could breath through my nose better and had more energy then pre-op and that fact still stands today which is a great thing. Today I was able to get out of the house to run some errands and while I'm pretty tired this afternoon, I'm doing pretty well considering I just had sinus surgery 5 days ago. Also, I had been in a flare up for the 3 weeks before surgery and surgery actually knocked me out of it which is amazing since normally it's the other way. I have a meeting with my disability lawyer, a post-op appointment with my ENT and an appointment with a neurologist scheduled for the couple of weeks so until then doing the recovery thing.

Upcoming Sinus Surgery

I saw the ENT today where I had a CT scan of my sinuses done.  The CT scan and the scope yesterday confirmed my sinuses are most likely causing the problem so I'm going to have sinus surgery on the 18th. The type of sinus surgery that I'm having done has a quick recovery time, doesn't include any incisions, and they will not have to break my nose or anything even though that's the doctor will get to my sinuses.
Then if my ears are still causing problems once I recover from the sinus surgery I may be tubes then. 

I saw Dr. Ron Shasy (ENT) today. If you ever need to see an EN, you should check him out. I love doctors that are though but works at a very face pace since he isn't going to play any games. It's really nice to walk out of a doctor's office with a detailed plan in place.

The fluid that was in my ears has drained out but he still believes my eustachian tubes are blocked caused by chronic sinusitis so he put me on cipro and prednisone even though I've had GI issues/triggered a flare with it before because I'm not "allergic" to it. Even though these two medications might not help a lot to get rid of my sinus infection before Monday it will give my system a jump start on it along with just being a good thing to do with the thinking that I will most likely be having surgery sometime in the near future.

He checked my hearing and scoped my nose and has scheduled a CT scan of my sinuses on Monday. After the CT scan I will see him again to go over it at which time he will most likely schedule sinus surgery (http://www.balloonsinuplasty.com) asap. If we aren't able to have that done within a couple of weeks he will go on and put tubes in Monday at his office to give me some relief until then but if can get the sinus surgery in soon he'll just wait to put them in until then.

In other health news- I'm still vomiting a lot, looking pale, no to very low energy, not eating a lot between not having much of an appetite and being nauseous most of the time, running low grade fevers, being very weak, etc. Somehow though my blood work continues to look good and I've been able to keep myself hydrated though so that's a really good thing.

December 26th Update

I’m sorry that I’m just now getting this blog updated. This month has been a crazy one with 10 doctor appointment and everything that goes along with the Christmas season.  I tried to make this year’s as low key as possible for myself. Today I'm not feeling the best after a wonderful and busy Christmas. I was able to enjoy my Christmas with my medical issues only in the background, instead of forefront which felt amazing. It also felt great to take some of the cooking and cleaning work off of my mom, because she’s always picking up the slack for me.  

I saw all of my current doctors in the month of December. I kind of have more questions, now besides answers but that's the way the cookie crumbles for me here lately. I still have several appointments in January though.

 I've dropped 10 pounds and 4 pant sizes but none of my doctors are concerned because I'm not malnourished. I haven't had to have IV fluids, for a two month time frame. My doctors are keeping an eye on things. Some days I have a huge appetite, hungry all of the time, food/drinks don't bother my stomach or cause any problems. Other days a sip of water can cause pain, nausea and make my stomach bloat up to the point that I look at least 5 months pregnant for hours or even days. Most of the time it doesn’t matter what I eat beside dairy, really fatty/greasy, spicy, popcorn, eggs, and any foods with a lot of fiber in it.

I’ve been vomiting a lot more in the last month, then I normally do.  I think that is being caused by the pretty bad vertigo that’s caused by all of the fluid in my ears. I saw an ENT a couple weeks ago but I didn’t like him. He put me on medication that I was allergic. He told me that I just had air/pressure in my middle ear, even though there is clearly fluid in them. I was able to schedule an appointment for the first part of next year with a different ENT, that was personally recommended to me by a friend.

I’ve also seen an urologist several times in the last couple of months. The testing she did last week I found out that for some reason its takes all of my pelvic muscles and some of my abdominal muscles just for me to pee. This is a new issue that has popped up. which she and my primary care doctor believes is being caused by a nervous system problem. I do have an appointment to see a neurologist towards the end of January. Until then my urologist is trying several different medications with the hopes that it will take care of the issue. If they don’t,  the next step would be pelvic floor physical therapy.    

I'm starting to get some of my strength back. I'm really pushing myself to get back to walking at least every other day. I plan on trying to get back to Pilates in the next couple of weeks. Also, there has been an improvement on the coping front. I have found that I seem to do better overall, if I don’t push through it. I schedule all of my appointments in the mornings, going to liquids or baby food when needed, and taking medication when needed also .

A social security disability hearing has finally been scheduled for the end of March. I hope to get approved for disability for several reasons, but mainly to get health insurance through the state. My COBRA insurance runs out in June. Due to having multiple pre-existing conditions I am unable to get health insurance any other way.

Interesting Article about the Link Between Gut Bacteria and Behavior

http://www.eurekalert.org/pub_releases/2011-05/mu-tam051711.php#

December 7th Update

In the last couple of months I've normally spent one night a week vomiting (even with medication, and lack of sleep is my #1 trigger for symptoms), struggled with eating/drinking enough most days, had to take pain and nausea everyday which makes me kind of tired all day- so not able to drive, low grade fever more days then not (which we've not found a reason for), pulse and blood pressure either pretty high or pretty low with also no reason for it that we have found yet, rentless nausea 24/7, dizziness/vertigo most days (if it's vertigo my vomit from it if I've up moving around or even sitting up- both primary care doctor and GI doctor both think this is from the fluid in my ears), terrible fatigue and brain fog most days, etc. Eating a decent amount most days is a struggle at this point; I have lost 8 pounds and dropped 3 pant sizes from when I saw her Monday and when I saw her last 2 months ago. She said though as long as I don't drop too much more, are not showing signs of being malnourished, and am to keep myself hydrated she isn't too worried at about it at this time because since she been seeing me (6 years) I have went up and down with my weight quite often.

The pain specialist I see did a celius plexus block which gave me 4 days of at least 75% of pain relief for 4 days and in those 4 days others told me I looked physically better then they had seen me in years and was able to be much more active along with not having as much of an issue with eating/vomiting. He said even though it was only 4 days of relief it was a good sign that his idea that a spinal cord simulator could be very helpful to me and that if we were able to get the pain controlled some of the other issues would most likely settle down too and I probably could have a better quality of life. I've started having bladder and kidney issues where I'm having right flank pain and having to strain a lot to pee so she's sent me to an urologist to kind of get back to the bottom of it. I've seen an urologist twice now and she tried a medication but it didn't help any so she's going to do urodynamic testing here in a couple weeks. She believes it more of a bladder issue that’s been caused by nervous system damage and then the bladder issue is causing pain that is acting like a kidney issue just to confuse my doctors more then they are already. I’ve also have done 6 biofeedback sessions and while my body seems to be reacting to it I don’t feel any different from when we started doing it. I go back to see my psychologist in a couple weeks to decide if we are going to continue them or just stop.

My PCP doctor believes all of my issues are being caused by an issue of my nervous system especially since we know from one the test the motility specialist I saw at UofL showed that their is an issue with the vagus nerve in my small intestine. She had an appointment set up for me to see an neurologist last week but that doctor ended being out of network for my insurance company so I'm waiting for a call from them to try to get an appointment with a new neurologist that is in my insurance network but all of them in town don't have appointments open for new patients until the new of January. I've been having horrible troubles with fluid in my ears for the last 4 months even after My PCP has tried flonase, Sudafed, antibiotics, and steroids and both her and my GI doctor thinks the fluid is probably is what is making me feel so sick here lately so I have an appointment to see an ENT (Dr. Al Speach of Bluegrass ENT) this up coming Monday about possibly getting tubes in my ears.

A social security disability hearing has finally been scheduled for the end of March and hopefully I will get approved then especially since my COBRA health insurance runs out in July. Since I have "preexisting conditions" that while I can not be denied by health insurance companies after the health care law that was recently passed but they are allowed to charge as much as they want. I'm still struggling to pay my COBRA insurance now even with successful craigslist, consignment and yard sales. We are planning on doing the consignment and yard sales again in the spring but until then it's difficult. It's also difficult because I hate having to depend on others, not being productive, and not being able to give 100% or more on things when I normally do not do anything unless I can give it my all. I'm still posting items on craigslist and facebook of some of the items I have for sale, plan on posting some items on ebay once my schedule and my body will allow it, and keeping my eye out for flexible part time work at home jobs that I could do when I feel up to it but not mess up my chance for possible disability and/or unemployment. More updates are likely to come soon as I already have 6 upcoming appointments before the end of the year. All positive thoughts, prayers, and comments are greatly appreciated.

Update About This Weekend and Today's Urologist Appointment

These last couple of weeks have been full of ups and downs. After the nerve block I had done last Tuesday and I have 4 really good days but then a flare-up started up again. I spent the weekend curled up in bed, not sleeping much, not eating at all, and only drinking minimal amounts of water. I felt halfway decent last night which was nice since we had our Thanksgiving dinner last night and I was able to eat/keep down some yummy food which was really nice. I'm back into the flare up today and it's still not as bad as it was this weekend. To add to it I'm slightly dehydrated, I've lost 8 pounds, and I've went down two pants sizes just since November 4th. I'm going to try to force myself to drink more so I can avoid IV fluids. I see my gastroenterologist doctor in a couple of weeks and she will address the weight lost then. The verdict is still out on whether the nerve block actually worked or not but I go back to the pain specialist in the morning. I had 4 pretty much pain free days right afterwards but then the pain came back full force when this flare-up started.

I saw Dr. Amberly Windisch (a urologist) this morning about the kidney and bladder problems I've been having lately. I really enjoyed talking to her where her eyes and attention were on me the entire time because she doesn't do any charting while she's in with a patient. Also, she was very concerned about my GI/other medical issues and makes a huge effort to make sure what she doesn't want to make any of those worse with her treatments.

Dr. Windisch believes I have a bladder issue instead of what my primary care doctor thought was a kidney issues. Dr. Windisch thinks it's probably bladder spasms since my bladder is completely emptying and her guess is when I had those two surgeries in March the surgeon could have knocked into it or moved it to a spot that my bladder didn't like. I mentioned to her that those surgeries were eight months ago but she said that isn't unheard of. Most of the time the body tries to fix it by it's self but when the body isn't able to do it you can get these symptoms. So she put me on a medication that may or may not help but in theory it should and I'm having to keep an input and output chart for the next two weeks. I go back to see her after the two weeks so we can see if my symptoms have improved and talk about plan b if need.

Celiac Plexus Nerve Block

I had a celiac plexus nerve block back done on Tuesday by my pain specialist.  I got an instant result and didn't have any pain at all in my stomach for a day and a half and while the pain is starting to come back now it's not nearly as bad as it was. This is to be expected but the pain specialist told me that from the instant results I had after the procedure he believes it should give me at least some longtime relief. The exact time period and how much relief I will get from it is still up in the air but my doctor sees this as a good sign. This result so far supports his theory that a spinal cord simulator would be a great option for me long term but he has to give it more time before he can call it a success and try to get my insurance company to pay for the stimulator. Even if they won't pay for that, my pain specialist said he could do a block every 3 or 4 months or longer if I can since it's a very simple procedure and isn't damaging plus he told me that there are more options that have opened for me for pain treatment now we know exactly where the pain is coming from. So right now it's a waiting game to see how long I will get relief and what road we want to do once I'm no longer getting relief from this go around.

Otherwise, there hasn't been many other changes. I'm still struggling with fluid in my ears that will not go away no matter what we do, kidney issues, appetite issues, low grade fever, fatigue, etc. I have several appointments in the next month with some new specialist and some I see all of the time so hopefully we can get the ball rolling on the other problems too. I'm still really tired and weak from the flare up I've been in so I've not been exercising as much as I was or should be, I'm not eating as well as I was or should be and I haven't been getting out with friends as much either but I'm really trying to get back to all of that soon as long as my body will let me.

More Appointments with Specialist and Testing Ahead

I'm starting to get back to my "normal" after the tilt table testing last Monday. My appetite is back, my energy is starting to come back, the pain is starting to calm down, I'm starting to sleep better and more along with no longer currently vomiting on a daily basis.

On other news, I got a call from one of the ladies at that works at my primary care doctor's office. My doctor wants the kidneys issues that I've been having lately checked out more since overall the ultrasound was normal but there was a little difference between in my right and left kidneys in size and function. So I will be seeing a urologist on the 22nd of this month and more testing of my kidneys will likely follow that appointment. My primary care doctor also is sending me to see Dr. Everman at Lexington Neurology on November 29th for more testing of my nervous system as it does seem to be an issue with my nervous system but my primary care doctor isn't sure exactly what it is.

I Need New Fundraising Ideas or Money Making Opportunities

Since we are not having any other yard sales this year I'm now looking for other ways to make money to pay my medical expenses. So I'm looking for some new ideas of what else I could check out/do to make more money or fundraiser to pay those expenses. If you know of anything that I may be able to do or something I need to research email me or comment on here. Any suggestions would be appreciated.

What I Have Done and/or What I'm Currently Doing
Coupons
Craigslist
Swagbucks
Pinecone Research Company


What I am Already Planning on Doing
Ebay
Esty Shop


The problem is I haven't had a great success with any of these and my medical expenses continue to add up. That's what I'm looking for help with. Any and all fundraising opportunities have to have flexible hours both times and days, because I never know when I'll get sick and how long I'd be down. It would be best if it was something I could do at home too.Most days it's difficult to get out of my house either because I feel too bad and/or some of the medications I'm on makes it difficult to drive or even ride in the car. It can't be physical because my body is so weak, and it can't be around kids, because I really can't afford to get sick from one of them because an infection usually triggers a flair up.

Primary Care Doctor Appointment Update

I saw my primary care doctor yesterday. The ultrasounds of my kidneys and bladder along with the tilt table test came back normal. She did order different blood test to check, for several things including the amount of the migraine medication I'm on because it's not helping. If the right amount of this medication in my blood, she said we just need to give it some more time.If the isn't the right amount we may have to try a different medication. At least keep me on it until I am able to see the neurologist she is referring me to for the migraines and for the nervous system issues that we know I have.

She believes that the vertigo is being caused by the fluid in my ears, she put me a nasal inhaler to hopefully clear them out. If after another month or two if we haven't any progress she is going to put me on steroids for it. She said she wouldn't be surprised if we get that fluid out, the nausea I have to deal with on a daily basis could decrease some but we will wait and see.

My primary care doctor has some ideas for a couple tests and medications that might be helpful.Since I seem to be getting worse instead of better she is thinking probably the best thing for me would be to go to the Mayo Clinic or Cleveland Clinic.

More Testing and A Bad Flair Up

Here's an update on what has been going on in the last week or so. There is still an issue with my kidneys or bladder that is causing me not to be able to pee at all unless my bladder is completely full and even then I really have to strain. Dr. Mitchell has ruled out infections and had an ultrasound done of my kidneys and bladder last week.

 

 

 

I have an appointment with her on Friday to go over the results along with the results from the tilt table testing I had done on Monday. She has referred me to a neurologist for the migraines but that office hasn't called me yet.

 

 

 

Besides the kidney/bladder issue I had been doing really well the last several weeks- I was eating quite a bit and a balanced diet. I was also exercising at least every other day including a pilates class each week and getting out with friends at least once a week if not more. I'm really ready to get back to that but the tilt table test really flared everything up which is probably worse then it has been in at least 4 or 5 months. The test was done on Monday and even though I'm slowly getting back to eating and daily living things, the last two days I was so weak that I couldn't sit up, I had one of the worse headaches I've ever had, very little sleep, dizziness, vomiting, the works. Luckily I was finally able to get some Gatorade down last night or I would have to go get IV fluids today. I'm hoping that I continue to make improvements each day like I have the last two days but it really sucks especially with the weather being so nice and me being stuck in the bed for days on in.

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.

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.

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 in Lexington. Along with many other tests my gallbladder was tested and it was slightly dysfuncting so it was removed. That really didn't help any so thought I had sphincter of oddy dysfunction so I was sent to the University of Louisville since they had better doctors and facilities to test and take care of that. That sphincter was dysfunctional so they cut the sphincter but I still didn't get any better. The doctor I saw at UofL decided to test me for gastroparesis (when your stomach doesn't empty as fast as it should). That test did come back that my motility was a little slow and I got the diagnosis of gastroparesis. That doctor tried a variety of meds before I asked to be transferred back to a doctor here in Lexington since the trips there and back where difficult with me going to school.

I was then sent to see Dr. Kathleen Martin here in Lexington to see if she could figure anything out. I'm still seeing her 8 years later. She's really great, very smart, really tried to gets to know me, is willing try new things and listen to me but is very conservative in her treatments. She will not run tests if they don't really need to run or rerun tests if they aren't going to give us more information or put me on medicine just because along with being willing to do whatever she needs to done on an outpatient basis so I can avoid frequent ER visits and/or stays in the hospital. She's tested me for every common thing she could think of and some of more uncommon things too.
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.