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.