Life, She is a Changing ... and I am Changing with Her

The last few years have brought tremendous changes in my life. I went from travelling every week for work to finding my dream job locally. I was well respected in my field and loved my work. My family is wonderful and likewise was doing very well. I found a very comfortable niche. In the midst all of this life goodness, I continued to get sicker. I went from playing pick-up soccer to roller skating to walking to doing not much at all because my legs began to fail me. I have been gaining weight despite dieting, experiencing a lot of pain, migraines, breathing problems, so many things. Getting assistance from doctors was difficult for a long time. When you are overweight, that is all they see. As my body continued to spiral downwards, finding compassionate doctors who were willing to look beyond the obvious and really dig in with me was very difficult and there were a lot of humiliations along the way. Finally, when my thyroid died in 2015 I was able to get doctors to take me seriously. It was the beginning of putting together a crackerjack team of doctors who finally figured out what was wrong with me. For those of you who do not know me, I have been experiencing increasing debilitation across most of my body's systems for almost 30 years. It wasn't until I found a good immunologist, neurologist, and family doctor that I was finally diagnosed with the conditions that have plagued me for years. I have over 12 conditions diagnosed so far. 5 or maybe 6 of them are rare conditions. It is completely overwhelming. Despite being overwhelmed with my diagnoses and the things I need to do in order to feel better (and the reality that I can only feel so much better and it will likely continue to get worse), I try to stay focused on life. I have a great family, many things to do, etc. But, I have to admit, it has been difficult in the face of increasing illness. This year I finally became sick enough that I could no longer work. It was very demoralizing to reach that conclusion and to face the scary future. Being disabled means different things to different people. For me, it has stripped away all of the things I used to self-identify myself - being super smart, cute, active, successful. I have had to dig deep to find what still makes me unique and different and special and focus on bringing those things into the light. Without that, I would probably have succumbed to despair. I have many ideas of things I would like to do - from advocating for animals to writing books, but I am currently grounded by fatigue. I hope to one day be able to fly up high with my ideas and put them into action. In the meantime, I am learning about my conditions, advocating for myself, and trying to develop the discipline to take care of all of my conditions properly. I hate discipline. I hate even the idea of discipline. But discipline is necessary. It is a careful balancing act. I am hoping to blog more. I would like to improve awareness of my rare conditions. I would like to connect with others who have similar stories. I would like to change the conditions that make diagnosis of rare illnesses so difficult. Early intervention is critical. Waiting 30 years is too long. I hope you all are doing well in your own lives, and if you are not - I hope that you make great strides this year. All of our challenges are different. Namaste.

Polarization - Talk About Climate Change!

Have you noticed how polarized life is getting? The fringe is getting more fringe-y. The violent are getting more violent. Crimes arae getting more spectacular every day. News is getting more sensationalized. Paparazzi are getting more invasive. Trial verdicts and jury awards are crazier and crazier. Government is more and more divided and angry and defiant. It seems like, anymore, people don't think it's worthwhile to take a step unless it can be a very large step that rocks the world and goes viral. I miss peace, quiet, and sanity. At the rate we're going, those words are going to end up obsolete. They will go the way of fardel and golly.

In a world of me/my we've lost our sense of common purpose, of acting for the greater good, of compromise, and common sense.

I really miss seeing common sense.

Please bring back common sense.

Jen

Biggest Loser Part Ooof

I've been upset the last week on and off while processing things and getting things worked out. Things are going ok, but the benefit of this (aside from getting things worked out) is that I haven't felt like eating and I've had so much anxiety and the nervous energy that comes with anxiety that I've been constantly on the move. I lost 3 pounds! Woot!

I've gotten on the treadmill twice - once for an hour and once for ten minutes. My lower back and hips have been in a lot of pain and I'm using my cane again, but it's going ok. I'm taking my meds (OTC and prescribed) and just taking it a day at a time.

My goal is to lose a pound a day. So far it's 3 over 8 days. But maybe now that the losing has started, I can keep it on track. We'll see.

But, my house is full of sugary carby snacks for the kids. I have no desire to eat them. Woot! That is an excellent sign.

Jen

What Is Compromise and What is Ripping Out the Heart of Who You Are?

The thing I get the most push back on personally and professionally is my Type A, detail oriented, risk adverse, analytical self who needs to understand everything in a very microcosmic sort of way. That is so integral to the person I am it is very difficult for me to look outside that and see any other way to do things. It's instinctive.

I ask a lot of questions. I think about things. Ponder. Project. Analyze. Speculate. Hypothesize. I come to conclusions (sometimes wrong conclusions). I act on what I think I know. If I'm wrong, so be it. Give me more data and I will put it into my mental grinder and come to new hypotheses.

I am risk adverse. And I don't like change. When I plan, it is to avert as much potential bad crap happening as I can without being ridiculous about it. However, my personal idea of how much planning is the right amount of planning and someone else's might be very different.

The problem I have is that people are so unpredictable. And not only are they unpredictable, they also are not all tuned into themselves enough to understand their reactions and motivations. Some are, don't get me wrong. But some aren't. How do you know the difference? I don't think you really can. You can only go with your instincts and hope for the best. And a lot of people really don't feel they can be honest with you. Everything is said in a metaphorical way to be nice. The hard true stuff is just left out or justified even when they think it's ridiculous .. all in the name of the relationship.

And every so often you come to realize that when you thought you were in synch with someone else, you were so wrong. You missed all sorts of flags and hints and subtleties (because you are not so good with the subtleties). But when you finally notice them, they hit you hard because there are so many of them and they are so completely clear you feel stupid for missing them. Projecting and hypothesizing only works if you are running projections in the right direction. Turn around and the projections look completely different.

I think interpersonal relationships are the single hardest part of being human by a huge margin.

My life would probably be a lot simpler if I were not the Type A, detail oriented, analytical, risk adverse person I am. I can, maybe, just not act on my projections, but it gives me a LOT of anxiety. What if later someone comes back and says, well, why didn't you say something if you thought it was a bad idea? Letting go and just watching things fall where they may is very, very hard. Frankly, I don't know if I can do it. But I'm going to try.. even if just to see if it works better.

In a way, though, I resent feeling like I need to try. I feel like I'm being asked (although really no one has asked), to change the core of the person I am in order to fit into society better. It makes me feel like life is chipping away at my identity in order to turn me into some Stepford person.

Life is hard.

Jen

I'm Kind of Peeved

You know how when you first meet a new person they are all bright and shiny and interesting and they think you are all bright and shiny and interesting.. and then.. after a while, you become just a background piece of scenery in their life.. they want you there.. they like you and all.. but they don't really talk to you anymore or make direct eye contact. It's like they stop seeing you as a person. You're more like a pet.

I hate that.

I want sincere, being in the moment people-ness. Tuned in. Paying attention. Interacting on purpose. Seeking each other out due to a mutual desire to spend quality time together.

It seems like life is so full of busy-ness and constant demands on our time and attention that the sincerity of interpersonal relationships has taken a flying leap into the toilet.

It bums me out.


Jen

Oh, just ARRGGHH!! anyway.

First, food. I lost 3 pounds last week. I have come to the conclusion both through reading studies and through experimentation, that sugar substitute is the Devil when it comes to dieting. Sugar substitute and exercise. Do you find that as funny as I do? I mean, really. Because that's been the whole sing-along I've been hearing about weight loss for over 20 years. How ironic.

Second, ARGH! Our dog Lilly has abcesses all down one side of her body (I'm guessing they're from some sort of insect bites, but no way to know for sure). Disgusting. She is currently on antibiotics and anti-inflammatories while they conduct some cultures and getting twice daily cleanings and antiseptic/hot compresses. Hopefully this will not require surgery, but there are no promises. She is doing well though. No fever, good attitude, eating good, lest you be inclined to worry overmuch. Bad news, but not terrible. In addition, my horse, Caspar, is getting overheated. This may be due to insufficient sweating (anhydrosis). Apparently the condition can appear at any time and be partial or complete lack of sweating. In his case it would be partial. I am still observing his sweat patterns to see if I can determine if this is the case, but my initial inclination is to say yes. So, I am going to the barn several times a day and wetting him down with tepid water, watering down the shade parts of his stall to make it cooler, and letting him out to pasture at night to prevent colic (a kind of stomach ache that can be fatal and can occur when a horse is stressed). So far he is doing well under those tender ministrations. Oh, and he also now has a bloody scratch near the corner of his eye. No idea how he did that. So, I cleaned that up and got him some electrolyte powder for his feed. I also got a rectal thermometer so I can, in a pinch, get a reading and make sure he's not getting heat stroke. There are other signs I will look for first though.. bulging veins and panting. (Less gross.)

And, my jeep.. which I love, has a very cool humongous sky slider roof (an accordion style soft roof that slides back). Said very cool roof has decided over the last couple of weeks not to close entirely. Monsoon rains are due to begin next Tuesday. The earliest the service center can get me in? Wednesday, naturally. It's also a very bad time to be without my car, as I need to go to the barn several times a day to hose Caspar down. And I'm working next week, so I can't just stay at the barn.

ARGH!!!

I feel very aggravated.

And now my HOA is saying we must move the shed from behind the side of our house to the back of our house. Which is fine.. but time consuming and it's 109 degrees out. (baleful look) Why couldn't they have objected to it in December or January?

On the positive side (a short but important list), the new fish have not been eaten by the turtle. My two new corals are still alive. My son is doing well on his new medication (thank God), and I get to be home for the next 3 weeks (one of which is a vacation week).

And, of course, I lost 3 pounds.

I am a poorer and busier - but thinner - girl.

Jen

Puppies Puppies Puppies Puppies Puppies

Before Bailey died, I had been planning for the future.. thinking about what kind of puppy I would get after she passed away. I always knew her death would be very hard for me. Originally, getting MacDubh and Duncan was a way to ensure that I would still be surrounded by loving dogs after she passed. But both of the boys went to live with Tasha when she moved out because they were pretty cat aggressive and MacDubh was totally devoted to Tasha. Then MacDubh died at only 6 years from a severe bronchial infection. Duncan still visits, but its not the same.

Then Robert moved in with his dachshund Lilly. She's sweet. She's 10. Totally a lap model. Not quite the same though. She's a dog. Most definitely. Bailey was more like a person. So was MacDubh. Duncan was similar, but not with the same intensity.

I thought, well, maybe I would get a labrador retriever. They are great dogs and excellent retrievers. I could teach my lab to bring me things that I drop and help me.. as I'm not so bendie anymore.

But really, my heart belongs to mastiffs. The more I looked at pictures of labradors the more I wanted to look at pictures of mastiffs.

So, I think Robert and the kids will have to endure the slobber and the hair for a while longer.

I still miss Bailey, but I don't cry for her anymore. My heart is opening up for another baby to love. I just want one that looks different. I don't want to see Bailey in their face. A different structure .. maybe a fawn boy with a big square head this time.

I was shocked at how much prices have risen. Bailey was $1850, fully health tested parents and a solid lineage. The ones I have seen recently that meet my health testing and lineage requirements are $2500. That is going to limit how soon I can have one. And also, my job ... travelling all the time. I need time at home for my new puppy. That stresses me the most. I can have a bunch of time at home next summer. But that is a whole year away. I long for a puppy now.

Makes me a little sad.

Jen