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.