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Wednesday, February 22, 2017

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.

Tuesday, February 14, 2017

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.

Monday, February 13, 2017

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.


Thursday, February 2, 2017

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. 



Thursday, January 26, 2017

Putting our House on the Market - the Migraine Way

After much consideration, hubby and I decided to put our house on the market. We love our house and the thought of moving makes both our stomachs turn but we stand to save some significant money by moving to another part of the county, plus hubby can shorten his commute. We have not committed to moving but we have committed to giving it a try.  So here we are.

Thankfully there wasn't a whole lot of work that needed to be done to prepare the house for showings so we were able to get it on the market pretty quickly. Because of my chronic migraines and fibromyalgia, having a simple get-out-of-the-house-quickly plan was most important. I needed a simple plan so that if I needed to prepare for a showing during a migraine, I could do so without much work and without much thought.

To that end I put together two bug-out bags. One has all of our small electronics and financial stuff in it and the other has all of my prescription drugs and some water. I've also stashed an eye mask in the clove compartment just in case I need to shut out the light.

So far, we've had plenty of notice for the showings but you never know when someone will want to get in right away. My plan has removed most of the stress from the situation.

I've uncovered an unanticipated downside to letting strangers into our home. Someone came through wearing so much perfume that I could smell it for more than an hour after they left. I tend to believe nobody should ever wear so much perfume that the smell lingers that long. I wish I could ban people like that from coming in here. My migraines have made me very sensitive to smells so I was quite annoyed when we returned home and had to endure this woman's perfume for a time. Although, if I had to choose, I would pick perfume over cigarette smoke any day.

Honestly, I don't know that there is any way to prevent such things from happening so I've resigned to just put up with it. After all, it's not as if everyone coming through leaves their smell behind.

Friday, January 20, 2017

Seeing Some Fibro Pain Improvement from Nortriptyline

A bit of good news after two attempts to find a medication to help with the nerve pain in my hands and feet, I'm actually responded to the latest one - nortriptyline. I've been on a low dose for about a month now and in the last week or so I've noticed some improvement. I still get the pain when I'm on my feet or do any cleaning or whatever with my hands. By the end of the day I'm still in pretty bad shape but the aggravation of the day usually resolves overnight. I'm also able to do a little more with my hands before the pain takes over.

I had a follow up appointment with the neurologist this week and he is going to have me slowly increase the dose in hopes of seeing even more improvement. The thought of actually getting some relief, well, it's thrilling! I spent so many years trying medications for my chronic migraines and never seeing any benefit. The constant ups and downs of hope in a med and disappointment when it wasn't effective conditioned me to NOT expect relief. Especially considering the fact that all of these meds are ones I've tried as migraine prevention.

As always, the downside is in the side effects. The big one with this medication is the dry mouth. It wasn't bad at 10mg but it was more noticeable at 20mg. I just increased to 30mg and it has already become a bigger issue. Also my doc noticed I've developed a small tremor in my hands. It was minor enough that I hadn't noticed it. He said this can be a side effect so it is something we will keep an eye on.

When it comes down to it, the benefits far outweigh these side effects. I might actually be able to resume using my hands and feet in a more normal fashion. Even retaining the small benefit I've already seen would be priceless to me. The chronic migraines and other effects of the fibromyalgia are hard enough to cope with.

Tuesday, January 10, 2017

The Challenge of Understanding

Every now and then one of my friends will encounter some challenge in their life that they never saw coming (divorce, rough pregnancy, etc). Suddenly they are thrust into a terrible challenge and they find themselves being judged and hurt by the response of people around them. As they emerge from it they will write a lengthy facebook post preaching about those challenges and how the responses of others has hurt them and how it only added to their burden and made coping more difficult. They go on to plead, with all who read, to show other people, going through their specific challenge, compassion and kindness because it actually is really difficult and can't be understood unless you've also gone through it.

I tend to be of the mindset that the only way to understand what it's really like to go through anything is to actually go through it. Even then, you can only ever know what it's like to go through it as you, with your temperament, personality, intellect and background. So when I see my friends make these kinds of posts I always want to reach out in the comment section and point out that this is true for all people going through all challenges - especially when this is coming from someone who has gone out of their way to paint entire groups of people with harsh judgement, which completely lack perspective and context.

As someone living with chronic invisible pain, I'm constantly facing these sorts of challenges. Yes, it does add to my burden and make coping with a very difficult situation even more difficult. I totally get why they want to reach out and plead with people to understand and be kind to those who are going through the same thing. But I keep finding myself feeling frustrated when the lesson they learn is always specific to their situation. Even if unintentional, their plea that we shouldn't minimize the experience or judge someone going through X, implies it's still okay to think people going through Y are lazy, weak, immoral, or whatever. Again, this feels especially true coming from people who are unapologetically judgemental.

It's the same with politicians. Often times when you find a politician fighting hard for rights, research and policy change for a specific populations it's because they are personally impacted by it. We have a state rep who ran for reelection this year, who boasted in his commercials about how he fought to make it easier for children with autism to have access they didn't have before because he had a child with autism and knew the challenges. That's all well and good for children with autism but I wish the lesson he learned was that all children, facing all kinds physical, mental and socioeconomic challenges deserve the benefits he fought so hard to get exclusively for children with autism.

Why can't we all see that we all deserve the same go at life? When we all do better we ALL do better. Why is that such a hard concept to realize?