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.