Taking the House Off the Market

Hubby and I have decided to take our house off the market and stay put. We were unable to find a house we loved, in the area we wanted to be, at a price that made sense for us. 

I'm glad to no longer have strangers coming through our house. People are not always respectful. One person left an oil stain on our driveway. Another one picked up and dropped an insect trap in our basement, somehow getting the super sticky glue onto the cement, walking through it and spreading it all around. A couple of them left lingering perfume. No good.

Plus, it'll be wonderful to no longer spend all that time and energy prepping the house and looking at houses. No more inconvenient showings. No packing or unpacked. None of this was migraine of fibro friendly. 

Life is returning to normal, now with the comfort of knowing we are presently in the optimal situation. 

Selling and Buying in a time of Chronic Pain

This selling/buying is not migraine or fibromyalgia friendly. Most days there are no new houses to look at. Inventory where we want relocate is very low and when something hits the market it is usually sold in 1 or 2 days, which means we have to go and look at a house as soon as it hits the market. We've also had a lot of people looking at our house. All of it is hard.

The house is in a pretty constant state of ready for a viewing but there are still several things that need to happen before each showing. The roughest is opening all the room darkening curtains, removing the blackout cover I have attached to the bedroom windows and removing/folding the furniture covers. Then upon return I have to replace everything so we are ready for regular living. All of this is a challenge for my fibromyalgia and migraine prone head.

The leaving is also difficult. Most of the time there is no place to really go with the dog, so we just drive around the corner and wait it out. Sometimes I walk around a bit with Gypsy to help her feel less anxious but mostly we just wait in the car. It's uncomfortable, I have to put up with the lights and there isn't much of anything to do. This, on top of the added tasks to get ready and settle back in, is rough on my easily triggered migraine head.

It's not so bad to do once every day or two but we had 5 scheduled leaves over this past long holiday weekend. We also looked at a potential houses. Boy was that rough. Even after taking yesterday off, I still haven't recovered from all that activity.

I'm struggling to manage my migraines and fibromyalgia through this process. It can't come to a close soon enough. Right now, it's really just about finding another house cause we have plenty of interest and even offers coming in but have yet been unable to settle things since we don't have a place to go. The whole thing is a giant hassle. I hope in the end it will have all been worth it.

To Try Botox Again or Not

So I've been going to a neurologist for the pain in my hands and feet. Because I also have chronic migraines the doc wants to know more about that too. He specifically asked if I had tried botox before. I explained that I had two rounds of injections, neither of them effective and I had a reaction to the 2nd round. He then started pushing for me try it again. He said it can take as much as 3 rounds to be effective.

I wasn't really in the right frame of mind to make a decision like this because I wasn't there to talk about my migraines and, while he is a neurologist, he is not a migraine specialist. But he went ahead and told his assistant to start the process with the insurance company.

The circumstances surrounding my first 2 rounds are a bit complicated. The first round was in the early months after it was approved by the FDA for use as a chronic migraine preventative. I received the injections from my migraine specialist at the Mayo Clinic. It was quick and painless but ineffective. Meantime, we're in the process of moving to St. Louis and my specialist tells me about a wonderful colleague of his he has known since medical school, who is also a migraine specialist in St. Louis. Some of you might know him as he has been active in the migraine community - Dr. Todd Schwedt.

I loved the idea of having a local migraine doc so I started going to him. It took several months to get the initial appointment and several more months to get the insurance company to agree to allow me to try it again. Of course, far too much time had passed for the first round to to help build up to a thearputic level with the 2nd round so we were basically starting all over again. This time it was administered by the resident and supervised by Dr. Schwedt. The whole thing took much longer and it was quite painful. I regret agreeing to let the resident do it.

Worst of all, I had a reaction to this 2nd round. For almost 3 months I constantly felt as though I was getting the flu whenever I would do anything. It was this extra layer of exhaustion that would kick in coupled with a low grade fever. I also got a red mark between my eyebrows that never went away.

Within a month after getting the 2nd round of injections, I received the terrible news that Dr. Schwedt was leaving Wash U/Barnes Jewish. Further investigation revealed that he had taken a job with the Mayo Clinic in Arizona and he was being replaced by two neurologist - neither one a migraine specialist. Between the reaction I had to the 2nd round and losing my migraine specialist I decided I was done with botox.

I do see how this might not have been a completely fair trial of botox. But I also didn't think it was worth doing more since I felt so lousy after that 2nd round. Even if it had been effective in helping with my migraines, which it hadn't, I'm not sure those side effects are worth a small decrease in my migraine frequency because it made even my migraine-free days difficult. I'm honestly not sure if I want to give it another try.

Right now I'm still working to figure things out with my hands and feet. I'm still feeling a bit overwhelmed by the additional pains and loss of functionality. I'm just not sure that I am up to dealing with additional limitations and side effects from the botox.

I've gone ahead and let the office help me investigate what the cost would be through my insurance. It's kinda expensive as you can imagine, plus I'll have an additional fee for administration of the injections.

Another misgiving I have is that this came solicited by the doctor. I don't know this doctor very well as we have only met twice and both times the main subject of our time together is the pain in my hands and feet. He is a neurologist and not a migraine specialist. He doesn't have much of my migraine history at all because he didn't inquire. He jumped rather quickly to asking about botox and seemed a bit pushy to get the process started. I am not convinced his motives are completely pure. And I certainly never would have chosen him to help me manage my migraines.

My gut is telling me something isn't right. I think the best thing to do is to listen to my gut on this one. I don't think I should let this guy give me botox injections. I don't think now is the right time to do a botox trial. But I'm still undecided about the notion of giving it a try again. Maybe it's something worth exploring further with a migraine specialist, another time.

Medical Costs and Billing Needs to be More Transparent

I have my fair share of doctor appointments. In fact, I've probably had more than my share over the past 11 years since my migraines went chronic. Over the years I've grown increasingly bothered by the way billing is handled. 

We make an appointment and we check to make sure the doctor is covered by our insurance. Then before we can see the doctor we have to sign a paper giving permission to be treated, to have our insurance billed for the treatment and vowing to be financially responsible for anything that isn't covered.

I get why we have to sign this paper. The doctors and practices need to protect themselves BUT there are no financial protections in place for us as patients.

Let me explain. 

1. We never see an itemized bill. The insurance company gets a bill and they make adjustments and payments based on that bill. Then, when applicable, we receive a bill for whatever portion we are responsible for. We never have an opportunity to verify anything in that bill. 

Call me crazy but doesn't that open this entire system up to fraud and mistakes? How much money is being wasted because there is zero transparency for and accountability to patients for the billing process. 

2. Nobody can help us figure out what something is going to cost in advance. Considering the high cost of every single medical encounter, I find it outrageous that pricing isn't readily available and disclosed to every patient, every time. 

For example: I went to see a physical therapist several years ago. We started our sessions at the end of one year and it continued into the beginning of the following year. I never saw a bill early on because I had met my out-of-pocket maximum. It wasn't until the new year that I saw what was being charged. To my horror, I discovered that I was being charged more for appointments when I asked questions than when I didn't. 

The physical therapist I was stuck with was super obnoxious and she felt the need to drone on and on about her farm and her horses and other shit I just didn't care to hear about, so often I would try to redirect the conversation by asking about my progress and getting ideas from her about things I could do better. Turns out, every time I did that I, she charged more for the appointment. So me and my insurance both paid her more money simply because I didn't have the energy to try to pretend to care about her personal life. I had nothing in common with this woman and I don't think it's right for her to fill silence during our appointment with personal stories. If we had to talk I wanted it to be about something germane to my appointment. 

I wish I had been told in advance that my appointment would be more expensive if I asked questions. Let's not gloss over the fact that asking questions during a pt session SHOULD NEVER COST MORE. 

Cost needs to be transparent and formally discussed at every stage along the way. Basic costs should be discussed before every appointment of every kind. Then if the doc needs to do more that should be discussed at the time. Then before leaving both parties should sign off on all of the expenses that were incurred.

I've Lost Pieces of me to Chronic Migraine and Fibromyalgia

Often I feel as though so much of my life is happening to me, beyond my control. I never know when a migraine will hit but I can be certain I'll have lots of them. The list of things I can't do is long so I don't often make plans. Those I do make are constantly in the stressful shadow of the uncertainty surrounding my health. 

Obviously everyone has to deal with things that are beyond their control in life. But it's different now than it was before I was living with chronic migraines and fibromyalgia. Before the things I couldn't control was limited to what others were doing around me. I still can't control any of that but now I have also lost control over much of myself. 

I can't control my migraines or my fibromyalgia. Sure I try to avoid my triggers as much as possible and I work hard to structure my days to minimize the various pains, exhaustion, nausea and other symptoms. I even put a lot of effort into staying positive and making the most out of the days that aren't too bad. Despite my best efforts I still have an average of 18 migraines a month. I still experience fibro flares. Inexplicably, it even seems my fibro pain has gotten much worse in the last 6 months with the addition of this foot and hand pain. 

At times I feel like I'm failing at life. I know this is just my mind making generalizations that are not necessarily factual. When I think about it I can point to some successes. Still, the failures feel frequent and significant. I lost my ability to work, my career, and with it the sense of pride, accomplishment and independence. I lost most of my hobbies and with it a lot of joy, balance and growth. 

I've lost pieces of me and pieces of my identity. I used to be a lot of things I no longer am. And it's hard.