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.