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.