Further Endometriosis Trouble

Well yesterday was a total loss. I spent the entire morning at the doctor's office and more than an hour on the road home due to a bad traffic jam on the highway. I've had a big increase in bleeding and pain and the doctor isn't sure why. She took a biopsy and I've been scheduled for an ultrasound. It may be a few weeks before I know anything. She also took me off the hormone pills I was taking and switched me to a quarterly injection instead.

I spent the rest of the day laying on the couch - exhausted and in lots of pain. The pain then woke me up in the middle of the night and has been getting worse as the morning goes on. I think I'm about 4 hours away from needing an actual pain pill.

Whatever is going on has triggered a migraine that doesn't respond as well to my usual rescue meds, my legs are in a nasty fibro flare and yet the squeaky wheel is this endometriosis or whatever it is. My periods were growing increasingly painful for about a year until it the pain become incapacitating in August and September. The one is September landed me in the ER. I told my doctor I never want to have another period again. I just can't manage the pain without serious painkillers and that is not acceptable.

When it comes down to it, I've become terrified of my cycle. I don't understand why my body is torturing me the way it is and I wish stopping it wasn't so complicated.

Some Endometriosis Drama

After landing in the ER because my endometriosdis pain had gotten so out of control this past September I was unable to eat, drink or move, my doc and I decided it was time to eliminate my periods and regulate my hormones. She wanted to give me an IUD but after doing some research and talking to some women who had tried this I decided it wasn't for me. The chances of complications were too high and if anyone was going to have complications it was going to be me.

The simpler solution was to just go on the pill and take only the active pills. She recommended one specifically and wrote a script. I started taking it right away and after a few weeks of adjustment I found that my body was responding in a most ideal fashion. I wasn't having any breakthrough bleeding or a period and the intolerable pain was eliminated right along with it. Ideal. 

It was ideal for 3 months. Then when I refilled my prescription and started the new pack I started spotting. Every single day since then I've been spotting. It has been about 4 months now. I thought for certain it was a bad batch of pills because it started the exact day I started a new set of pills. 

I called my doctor's office first and her nurse, after speaking with the doc, told me it would be something I need to work out with the pharmacy. Since I'm dealing with the mail order pharmacy I had to first have a frustrating conversation with the careless customer service folks who answer the phones and then I finally got to talk to a pharmacist, somewhere in Kansas. I was given some complicated instructions and a bunch of hoops to jump through to test different batches from the same manufacturer and also different manufacturers. 

I did what I was told and the daily spotting continued through it all. 

Satisfied I was having a reaction to this medication and not that batch of pills I called my doctor again. This time the doctor actually called me back. That's a first. Even stranger she called me on a Sunday afternoon. She asked what I was taking and then recommended another drug. When I went to pick this one up I discovered it was actually the exact same drug just at a different dose and different packaging/brand name. sigh

I did a search for this drug and read through all the possible side effects and discovered that this daily spotting was listed under possible rare but serious side effects. How did both my doctor and the pharmacist miss that?!!? I had very frank discussions with them both about what was happening. And why would my doctor prescribe the exact same medication I was struggling with? Why aren't these people more careful? Why does every little thing have to be so damn hard? WAKE UP PEOPLE! PAY ATTENTION!!

So let's try this again and see if we can't get a new drug to try.

The Narrow Window of Opportunity Between Weather and Pain

We've had lots of chilly, windy and rainy days over the last month or so. With a weather respite now arriving I have a list of things I want us to get done outside. Nothing too big - some light maintenance to the exterior of the house and some spring clean up and prepping for some planting. The trouble is, we not only need to work around the weather but also my migraines and fibromyalgia.

I can't do this kind of outdoor work unless I'm having a fairly descent day AND it's not too cold or not too hot. We're talking about a 7 degree range of comfort here. Even on those days I can't spend much time outside. The sun is a big trigger for me so it doesn't take much to put me on the road to a migraine. 

With these narrow parameters it seems like we never quite get everything done that I'd like before the summer heat and humidity make any outdoor projects impossible for me. I find myself wishing I could spend the time our neighbors do outside tending to their landscaping. The results of their efforts are always so nice. I would love to do that. 

Whimsy Wednesday

I just love Kate Mckinnon's impression of Hillary Clinton. It just makes me smile.

Have a great day!

Wondering if I Could Handle Getting Involved

I've been blogging a little less than usual for the past couple of months. Mainly because I've been preoccupied with some drama going on in our neighborhood. It's a very complicated situation that I have no interest in trying to explain here, but when it comes down to it our HOA isn't following the legal document that is supposed to dictate how things are run.

I've been on a fact finding mission that has turned up very few facts, other than everyone is being evasive. I've been feeling so frustrated, defeated, angry and helpless. I have so many questions and I can't seem to find any answers.

Then a small glimmer of hope. Rumor has it a seat on the board of trustees for the neighborhood might become available soon. My first thought is, I need to be on that board. I'm asking questions nobody else is. I'm thinking about this differently. I see so many problems with the way things are being done. If I was a trustee, the conversations I know we need to have would definitely happen.

But I have chronic pain and I honestly I don't entirely know what kind of a time and energy commitment being a trustee would require. Is it 2 hours a week, a month, a year? I don't know how often they meet - honestly I'm not entirely sure they ever have real meetings. There certainly are no agendas, minutes or financial statements made available to the homeowners (this is one of many things I would try to change). It's obviously not a job and can't possibly require a lot of time but without knowing at least a ballpark of what the requirements are I can't exactly commit to putting my name up. After all, it doesn't take much to be too much for me.

I feel like I could handle fielding email questions from other homeowners and if we had meetings every 2 or 3 months. I could make phone calls and communicate with the other trustees to get things done, so long as I could work it in around my pain. I DON"T know if I could handle a constant fight with the other trustees to get them to do the right thing. Either way, I certainly wouldn't want to do it for more than 2 or 3 years, but there is no term length for trustees (another thing I think needs to change).

I wonder how much stress being a trustee would carry with it. Would that stress be better than the current stress of feeling helpless and unsure of how to affect change without any path, power or pocket? Stress has such a big impact on my chronic migraines and my fibromyalgia. I don't want to exacerbate my conditions and I don't want to further complicate my life by taking on something like this. But this is not a choice between having stress or not having stress. No matter what this situation is stressful.

Under normal circumstances I wouldn't want anything to do with being a trustee but these are not normal circumstances. I don't trust our current trustees. I have very serious concerns about how things are being done. I know the neighborhood would benefit from my voice. But I have limitations. I have to be realistic here. I hope when the official word comes down about this seat it is accompanied with adequate information about what is required of a trustee AND some time to consider the decision. I don't have much faith that this will happen but without it, I can't consider the post.

Whimsy Wednesday

More Henri to bring some humor through his unique purr-spective.

Have a great day!

Lessons of a Wedding Weekend Away

A couple weeks ago I wrote about the planning that was taking place so that I could enjoy a weekend getaway with hubby to attend a family wedding. Well, with the wedding weekend behind us, I've learned an important lesson - I can't handle even the lightest of travel AND attending a wedding.

The early am meds kicked in and I felt semi good
at the church

I had a migraine the entire time I was away from home. I left home with the same migraine I arrived back home with 48 hours later. With heavy medication and a strong desire to see my family I managed to at least attend all the planned events. But I didn't feel well enough to enjoy them as much as I could. As a result I didn't get to talk to everyone I wanted to talk to. I didn't take nearly as many pictures as I wanted to. And I didn't have as much fun.

Part of the problem is that there were some unexpected triggers at the wedding receptions. I expected the music to be loud (though it was louder than expected as we were seated right by the speakers) and I expected flashing lights. What I didn't expect was the very chilly temperature inside. It was cold when we first walked in and I thought well, once the ballroom is packed with people it will warm up. It didn't. Then I thought once we got some food in us, it'll warm up. It didn't. In fact, by the time dinner was over I had been cold for 2 solid hours. As a result of being in the cold air I wasn't able to drink enough water because the water was also very cold. Between the muscle tension from the cold and the dehydration that followed, we had to leave almost as soon as the dancing began.

Hubby and I had hoped to get at least one dance in before we left but the dance floor was very small and very packed so there was no real room to do anything other than bounce in place. So we just went back to the hotel.

I'm not sorry we went because we did have fun seeing family we rarely get to see and we learned our animals do well with the sitter we found, which means we can leave them when we go up north to visit my mom in the future. Even though I'm glad we went, we will never again attend another big family function that requires travel.

Next year, almost exactly a year from now we have another family wedding. This one will take place in the area we live so I'll have another chance to get some of those pictures I didn't get this time around. Plus I will be better prepared for the potential triggers I didn't anticipate this year. It was a weekend of lessons learned.