Posted 1/22/2016 1:56 AM (GMT 0)
This is a long rant, but if you skip to the end you can see my question about LDN.
So I'm having issues with pain because my doctor has "a medical condition that prevents him from seeing patients." Pretty sure that it is early onset Alzheimer's based on personality changes in the last two years and the mess he left my records in.
So the practice that he joined two years ago is dumping every patient with a Fibromyalgia diagnosis and probably every one who doesn't let them shoot meds into their body using really expensive procedures. So since that doesn't and didn't work for me. I have had trigger point injections, but one of the pain docs in the practice couldn't find anything that was "wrong" and that was the only thing she could think of. Lasted 10 days instead of the normal three months.
If you don't come in for these expensive procedures every three months, then no meds. I really mean no meds. No sleep meds. No meds for dry mouth meds. Nothing. So they dropped me. I have been with that doc for 13 years. I had a combination of meds that worked to make life bareable. I am on narcotics, but they don't make me high and I'm not addicted. I go without them for long periods when need to drive or do something else like that. They work to knock my pain down about three notches.
So I did find a Rheumatology practice that would see me and help me the meds until we can figure out something. They sent me to a Pain Clinic who, today, patted me on the head and said just do yoga and go to a support group and I will feel much better. She also told me that she has plenty of patients that she is treating for other reasons who also have Fibromyalgia and they manage fine.
So she referred me to another pain clinic. They "just don't prescribe narcotics for Fibromyalgia because they don't work." I brought up LDN and then got lectured about reading things on the internet. I should be "going to a Fibromyalgia support group where I can talk to live people." Right, I have trouble taking the dog out to pee and I should get in a car and drive for 45 minutes so that I can be part of a pity party or be the person providing support. Been there done that. She has no idea what she is talking about.
Sorry about the rant.
It's been a really difficult 2 weeks, proceeded by a difficult couple of months (9) with too many things going wrong in my life. Since I'm ranting I might as well say life is not fair. Some have heard part of this, but here goes. In May my dad went in for an outpatient surgery and ended up with 10 surgeries 5 weeks in the hospital in and out of ICU. This was followed by rehab since the end of June in a SNF. He won't ever be able to live alone again. My mother was in an SNF with end stage COPD.
They were here in NC near me and moved back to CY two years ago because my mother "wanted to die in CT near her grandchildren." Mind you I have two kids who have seen less of their grandparents than the other grandchildren because we moved away for work. Oh, and I never sponged off my parents like my sisters did.
So I am POA for both and healthcare proxy. I spent the first 5 weeks my Dad was in the hospital trying to figure out why the docs were calling me. Come to find I out my niece (who works at the hospital) was calling up and changing the phone number they should contact me at to her phone number. The surgeon would call her number and ask for me and she would talk to them as if she were me. After I got into the financials, I found out my niece was stealing from them.
So during all this, I was also fighting with my mother's SNF to get her the care she needed. I literally was calling them two to three times a day to make sure that she was being cared for.
They prevented me from getting hospice in for three months. One week before she died. Why? because hospice is a mandatory report and they were neglecting their patients. No answering buzzers and moving patients into the hallway away from their buzzers and leaving them there for hours.
In October my mother died. I had to travel to CT, fly my daughter up from Florida and my husband had to cancel a business trip. It cost us $4000 and I had to make up my daughter's missed time at work so she could make her rent.
That's doesn't include the $8000 I had to pay for all the funeral expenses. By myself. It wasn't spilt between me and my sisters. I'm paying everything and there is still $1300 left to pay for the remainder of the headstone payment.
I also had to do the reapproval paperwork for Medicaid for my Mother and the entire application for my father. I would never wish this on anyone. I now have to find my father a place near me that fits into his income and move him from CT to NC.
Add to this the fight I had to get my doctor sign off on the Igenex test and then being dumped after 13 years.
My daughter works for Disney so there is no such thing as Thanksgiving and Christmas. We booked a Disney Cruise for December 5th because she could get that week off. I know it sounds like money isn't an issue, but we have been members of the vacation club since 2003 and we used 2 1/2 years worth of vacation club to do it.
The day before we were leaving, my daughter got into a car accident. Totaled the car. She was ok but the other girl shattered her ankle. Frankly, she was speeding and on her phone. My daughter was turning left and the girl was coming up over a hill and wasn't visible. In FL, if you are in an accident and you are turning left then you are automatically at fault regardless of what the other party was doing.
So my insurance company is throwing us to the wolves. They took 100% liability without asking us and have already sent the girls lawyers a check for $100,000. They told me that the poor girl spent 4 days in the hospital and already had $197,000 in bills. Poor girl, she should have been driving responsibly. Four days in the hospital doesn't come up to !97K. I know I have seen all my dad's bills and it took about 3 weeks and 8 surgeries before he got anywhere near $197k.
So they sent the check to the lawyers without any release of Liability. The lawyers figure we're worth more than the $100,000 and are waiting to see how much they can get. So I will end up in court because my daughter is still on my insurance and that makes me liable. Too bad the cop completely screwed up the police report and we have pictures of everything and witness statements.
The cop told me there were no witnesses (during a phone conversation) except he didn't ask and I was sitting next to the person in the car behind my daughter when it happened and he told my daughter there was no way she could have avoided it. We have enough to show the girl was culpable and if she had been traveling at the speed limit and had been watching the road instead of her phone, then she would have missed my daughter and not been hurt.
Anyone know of a Personal Injury lawyer in FL that takes the defendants side?
In addition, the judge can impose a min $500 fine and suspend her license for three months. She is now in FL permanently but can't get a FL license until they decide they are not going to sue or the suit is done. In order to get her license before everything is settled she would have to put up a $11,000 bond. If her license gets suspended she can apply for a hardship license - drive to work, school, the grocery store and church.
Luckily, she is still licensed in North Carolina and as long as she doesn't renew a license or register a car, NC won't see the suspension. Means that the car we bought to replace the totaled one has to stay in my name until she gets a FL license. Did I forget to mention because she has an NC license she couldn't buy a car and register it in FL? We had to buy the car (paying out of pocket), register it in my name and then my husband had to drive it down to FL because the insurance only wanted to pay for 5 days of car rental. She's under 25. The insurance company only paid enough to buy half a car.
My husband travels for work 2-3 weeks a month. He's in Japan right now and will likely get stuck in Houston on Saturday because its guarenteed that the airport i going to come down. We're going to get ice from the storm and we likely will loose power overnight.
This leaves me home with my 16 year old son. He's 16. Enough said. Actually, a couple of months ago he died his hair red and wore a hat for almost a week before deciding he was going to show me. He then asked me if I was going to make him shave it off. I said no. I would rather he not dye it but I'm not going to fight him about it. he actually hasn't re-dyed it so I think it was just rebellion.
For those that chimed in when I asked about treatment for Rages, I did start my son on the Jernigan's CNS/PNS and the rages have subsided except for our vacation week when I forgot it. It was amazing to see the difference. So he is ok for now until I can get me figured out.
Oh, I forgot. I went to the one LLMD in NC and only got as far as blood tests. She did diagnose me with Lyme (not hard I had positive CDC/Ingenex tests), Bartonella (have every symptom) and Babesia (have every symptom). The blood work cost me $900 after my insurance. She ordered tests for Babesia and Bartonella which were unnecessary as they were likely to come back negative. She suspended her practice for now due to her own health reasons. So I paid about $1200 out of pocket and the only thing I got that I didn't already know was I chlamydia and mycoplasma.
Then all this. I know a lot of this is nobody's fault. But boy life really sucks right now. I know you guys understand regardless of what the idiot doctor said today. Oh and I found out that it doesn't pay to be honest on the mental health portion of the questionnaire. Silly me, I thought docs would deal with me honestly.
Teragram, I can't ever understand what you sent through but I came close today. All because I answered honestly on the question about suicide. On the Never, sometimes, etc I said whichever was one step up from never.
Then I got interrogated about if I was safe. I am and I already have someone I can and do talk to. My son has ASD (me too probably) and we went through a very long time of therapy. We recently restarted - actually I am the only one that has been because I have lots of things going on. My son does need to go in and talk somethings over but more about how to navigate through some other issues that are not immediate.
So my real questions are does anyone have the link to the list of docs that will prescribe LDN? I think astroman posted link but I can't find it. I think this is going to be my only option.
I know that if I treat the Lyme eventually the pain will resolve but I need to make it to that point. I am on my own with this right now. I'm trying to figure out what herbals to try and need to get those started. I am going to start with Buhner's protocol and I have the new book but I'm having trouble with detox anyway. I don't have the MTHFR mutation but I have just about every other mutation that can cause problems. I have an appointment with one of the functional med docs on the MTHFR site in a few weeks. Hopefully that will sort that part of it out.
I have another question about Nystatin but I'll post it separately.
Thanks for listening.
Kim