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Walking on Sunshine

The change in my mood has been remarkable since I found out that I would be moving forward with the hysterectomy. For people who are chronically ill, the difference between getting good treatment and not is HUGE.

Being chronically in pain or ill is depressing enough. When you compound it with feeling frustrated that your medical providers aren’t listening or don’t seem to be working toward a solution to the problem it becomes almost unbearable. At that point it’s like there’s no end in sight. The thought of living that way FOREVER is pretty heartbreaking.

I saw the ENT this week as well. He reviewed my CT scan with me and sure enough, my septum is deviated. He said that with surgery I will be able to breath better and suffer fewer sinus infections. Since I’m trying to do a half-marathon (that idea seems crazier and crazier to me now as I cut into my training me), I need to be able to BREATHE while I walk quickly/jog. So, we’re moving forward. My tentative surgery date is November 5. That’s probably too close to the hysterectomy, so we’ll likely be pushing it out a week or so.

I am so thrilled to be moving forward on these two things. Finally not having to worry about endless bleeding and heavy bleeding is such a weight off my shoulders. It’s seriously felt like there was an elephant trying to balance on my head or shoulders. It’ll take a bit after the septoplasty, but to be able to breathe well at night should reduce some of my fatigue during the day and give me the energy I’ll need to train and finish the half.

The other thing I’m excited about is that my shrink gave me a prescription for ADHD medication. I tested “average” on the cognitive skills assessment, which would normally mean no drugs for me. However, given my symptoms she thought I could try it for a month and see if it helps. I won’t be starting until after the hysterectomy though. It’s probably a good time to start since I won’t be doing too too much physically and will have be largely focusing on mental tasks.

These last couple months have been great in terms of moving forward in my health. I hope this trend continues into the foreseeable future! I’m not sure what else I can control at this point, but who knows.

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A weird thought

A few days ago my friends and I started joking about turning my body parts into characters in a novel. I was building out a whole storyline based on my medical history, not just about the problems with my uterus.

But, the more I thought about my uterus as a character (played by Julia Roberts), the weirder it got. I have this image in my head of Uterus standing outside of a house, sad and lonely, having just been kicked out by everyone else because she’s been so disruptive (screaming and throwing blood everywhere).

I have always been the person who felt bad for stuffed animals left over at the end of a season, and I tended to buy them myself. When I see someone who’s been excluded, I feel bad. So then I got to feeling bad about kicking Uterus out.

I mean, it is weird, the idea of taking a part of your body and essentially throwing it away. However, if my arm were causing me the kind of problems my uterus does, that shit would be off my body so fast. My cycle (or lack thereof) wreaks havoc in my life. On top of all my other conditions, I just cannot deal with it. It is a physical and mental strain I just don’t want to deal with anymore.

This isn’t about me not physically having children. The idea of being pregnant has always freaked me out. It seems like a parasite just taking your nutrients and making you feel like shit. In my opinion, there is nothing LESS NATURAL than dealing with that for 9 months and then trying to shove something the size of a small watermelon out of something the size of a lemon. I hear the hormones make it so you don’t remember any of that mess, which is how mothers are able to love their children.

Still.

I also know what happens next in the scene. The people in the house feel bad about kicking Uterus out, so they let her back in. You know what she does next? She continues to go apeshit, shrieking and throwing blood everywhere. HOW ABOUT NO?

I’ve played this game with my uterus before. Thinking everything is getting better only to learn that no, everything is the fucking same. While that sounds like a party, I think I’ll pass. I’m over having Carrie as my uterus.

So, goodbye and good riddance.

I hate doctors: Part 76,589

Y’all know about the troubles with my uterus, so I’m not going to go into them again, except to add that this summer I had a 90-day stretch of bleeding WHILE ON PROVERA. Yes, you read that correctly – NINETY DAYS.

And for funsies, 10 of them were of the “how am I still alive to bleed anymore” variety. So yeah, that was fun. I was good and kept going to the gym, but not without nearly destroying a ton of my workout pants.

Anyway, I’m desperate to get rid of my uterus. It’s been the bane of my existence since 2002. I “became a woman” (God do I HATE that expression) in 1995. That means that for 7 years things were fine, and for the last 15 they have been absolute shit. Just complete and utter shit (not unlike Trumplestiltskin).

I figured, what with 90 days of bleeding, the doctor would agree that shit is really fucked up and it’s time to just get rid of the damn thing. At a minimum I expected that we’d at least follow up and make sure that the endometrial hyperplasia is gone (that was my diagnosis after the D&C).

Well, there’s a new head consultant in town and he doesn’t think the endometrial hyperplasia is a big deal. Uh, what? That seems like something we should follow up on since it causes an increased risk for cancer (not a huge risk, 1%, but I’d still like to just make sure).

Not only will we not follow up on that, he just wanted me on more drugs to deal with the heavy bleeding. Hormones haven’t really worked for me in the past (see above re: 90 days of bleeding while on progestin), so I’m not sure why he thinks that would fix things.

We went round and round about the Mini Pill or an IUD, neither of which I want. So then we chatted about a hysterectomy. We chatted at length. “You don’t want kids?” “No, I don’t.” “What if you change your mind?” “I won’t.” “Well, hypothetically, people can change their minds.” “Yes, I agree with you. But I’m me.”

I explained all the reasons I don’t want my uterus: My body can’t sustain a pregnancy, I’m like quadruple high-risk (diabetes, thyroid issue, lupus, age), I have mental health conditions that are heritable and I have NEGATIVE interest in passing them on, even if the chance is slim.

He went on to tell me that it could be a complicated surgery. Yes, thanks, I get that. I’ve had a SPINAL FUSION.

My favorite part was this exchange:

Doctor: I cannot make you take treatment you do not want.
Me: That’s true.
Doctor: Similarly, you cannot make me do a treatment I do not want to do.
Me: That’s also true.

So we hit an impasse. I didn’t want what he offered and he didn’t do what I think is best for my body.

I got so frustrated I cried.

This guy could not let go of the fertility aspect. Even though he asked me at one point, “You’re 36, don’t use contraception, and you’ve never been pregnant.”

HOSTILE UTERUS, DUDE. GET WITH THE PROGRAM.

Seriously though, this was a waste of an hour of my time that I am not going to get back. He HEARD me but he damn sure wasn’t LISTENING. I have had major problems for FIFTEEN YEARS. YEARS, my friend. And that’s enough?

The fact that I’m telling you how much it impacts my life to bleed heavily and for extended periods of time isn’t enough. I made him well aware of the list of other conditions I have. Did not matter.

Ultimately he passed me off to another doctor to talk about an endometrial ablation. I left unsatisfied because I was pretty sure that wasn’t the answer. Some research later, it’s definitely not. I’ll still meet with that doctor and see if I can convince her of the validity of my choice for a hysterectomy.

If she can’t help me, then I’ll talk to someone else. And if they don’t work, someone else. I will go until someone is going to fucking listen to me and UNDERSTAND where *I*, their patient, am coming from.

 

 

 

4

The Kid I Cannot Have

I recently decided that I do not want to have kids. I resent that I had to make that choice.

You may be wondering, “If she resents it, why did she make that choice?”

My 35th birthday is in a couple of weeks. The statistics about pregnancy after that age are readily available and definitely not positive.

But that’s not why I don’t want to do it.

Mr. Lyndsy has pretty great genes. He’s 35 and in good health. He broke a vertebra in his back and an old ankle injury gets him sometimes, but he spends his days in activities with kids who are twelve years old and does pretty well. He still plays sports. His father is in his 60s and still VERY active. He’s smart. He’s funny.

I’m smart. I’m funny. But that’s where the good stuff ends.

I was born with a bad back, or so said the neurosurgeon who fused my spine. Even now I still have back issues, just located in a different place. I have chronic pain in my foot from the nerve damage and tendon transfer.

I have Hashimoto’s which causes my body to ebb and flow through periods of almost manic energy and then into a state of fatigue. I’m lucky to have an endocrinologist now who was willing to treat it with medication, but it took going through three doctors before him.

Even with the Hashimoto’s treated, I have to contend with fibromyalgia. Random flares of body pain and bouts of fatigue so oppressive I don’t want to get out of bed. When you do finally get out of bed to do something, brain fog kicks in and you can’t remember why you up in the first place.

Of course, that’s not the only reason I don’t want to get out of bed some days. Depression and anxiety also like to jump into the fray, further knocking me down. The commercials that say depression has a physical component aren’t kidding. The body aches and fatigue are on top of feeling like your soul has done a round with Mike Tyson.

Diabetes can be a result of lifestyle choices. But sometimes, when your body is under attack from a bunch of other shit, diabetes gets you anyway.

For shits and giggles my kidneys leak protein. They aren’t supposed to. We do not yet know why it happens.

Perhaps my favorite is that I seem to be allergic to the sun. Prolonged sun exposure (as little as 30 minutes) results in a butterfly rash across my face and bumps down my arms and into my hands.

I have walked on the edge of the ultimate blackness. Been in that place where dying seemed like a much better idea than living. I managed to walk away from the desire, but my kid may not be so lucky. And it hurts because I know that all of my love wouldn’t be able to save him or her from that edge.

I don’t want that for my kid.

I had 15 doctor appointments in one month. I had blood draws for probably 40 lab tests. I spent a lot of time going to and from the hospital for those appointments. I have spent 9 nights in the hospital. The place where you’re supposed to get healthy, but health is impossible when you can’t sleep because someone is coming in every hour or so to make sure you’re okay.

I don’t want that for my kid.

There’s a long ass list of foods I don’t eat anymore because they upset my stomach. I can’t eat some of my favorite treats, unless I’m willing to risk an explosion of diarrhea at the worst possible time.

I don’t want that for my kid.

Standing, walking, and sitting cause pain. Running is out of the question. Sports don’t happen. Theme parks require sunscreen and a hat, and even then my face feels like it’s on fire and my arms look like something out of a sci-fi movie.

I don’t want that for my kid.

So I won’t have one.

I feel like I’m making the choice any good parent would make.

That doesn’t mean I like it.

I resent the hell out of it.

But it’s the choice I have to make. For my kid.

 

The Shoulds

A big struggle in my life right now is dealing with The Shoulds. I’m over it for the most part in certain areas – that I should talk like a lady, that I should have a certain body type – but there are bigger areas that I can’t shake it. Like when it comes to working.

I’ve obviously got some struggles with my health. Sometimes things are okay (not great, but okay) for a while and then BAM! I get hit with a big ass 2×4 and I’m down and out for a while. I have to be particular about how I use my time. Sometimes I can’t tell until it’s too late that something is going to steal all of my spoons.

The problem is that I have student loans. All those fancy letters weren’t cheap. When Mr. Lyndsy and I were getting to know each other, I told him that was my debt and that he wouldn’t ever be responsible for it. But here we are now. My health is such that I feel pretty gross a lot of the time. I work, but it’s not paying the loans. I can’t work in a traditional setting here because I wouldn’t have the protections I would back home. Even if I managed to not get fired for all the time I’d have to take off or because I can’t make it in before 10am, I wouldn’t be able to do anything EXCEPT work. My life would be look like this: Struggle to get up, get to work, work, go home, pass out.

Which brings me to my real issue: Do I have the right to have a life or should I force myself to work even if that’s all I could do? We live here to save money and saving would be severely hampered by me not working. If I were in the US, I probably would have already filed a claim for social security disability, and I don’t say that lightly. Because I don’t live in the US, I can’t do that, so it doesn’t matter anyway.

There’s a voice inside my head, I’ll call it MOM, that is yelling at me and saying, “Of course you should work! It is your responsibility to pay those loans. Your husband does not pay those for you! So what if you can do nothing else? Life is about sacrifice! And, are you really THAT sick?”

And then there’s another voice, quieter though, that says, “But how is that living? Is it even worth being around if that’s all you do?”

Then I end up in a downward spiral because I know that my body would suffer tremendously if I tried to work like I would need to in order to pay my loans. They work longer hours here and many jobs are 6 days per week. More than once I’ve thought something along the lines of, “If you can’t work, you shouldn’t be anymore. Do something about that.” Then I have to work to pull myself out of that dark place.

It makes me sad that I feel like my life doesn’t have value unless I’m sacrificing everything to work. Is that really an American value? Work at all costs? You have no value unless you work?

I didn’t ask for any of it. I don’t think my current conditions are my fault, I don’t think I did anything to cause them. I think my mom blames me for the diabetes, but science doesn’t exactly support her on that. I also don’t think I gave myself an autoimmune thyroid condition either (and I’m pretty sure this is what causes the crushing fatigue and brain fog that make my life hard). The neurosurgeon who did the spinal fusion surgery looked at my MRIs and said I was born with a bad back. (Back issues are what the vast majority of social security disability claims are for.)

And yet, I feel like I have to push myself anyway. I buy into the idea that I’m not THAT badly off, so I need to push myself to work. It can’t hurt my body that much, can it?

Shockwave Treatment: Commencing April 5

I finally got into the doctor to see about getting rid of the pain in my achilles tendon. (I made this appointment in early January.) Since I’ve been weight-bearing  after the surgery, I’ve had pain in my achilles. I thought I tweaked it (and I may have) but the surgeon said that the lengthening he did could cause pain and inflammation. So he referred me to another doctor for treatment. The real issue is that it affects my gait, which probably causing hip pain from time to time. I’ve got a vacation coming up that will involve a lot of walking, so I need to get as healthy as possible!

I totally love the doctor. Because my tendon transfer was so unusual and because of my tattoos (lots of doctors apparently watched the surgery), I’m pretty memorable there. There were two doctors there and they were both really nice. The one I was referred to discovered that I actually have a lot of pain in the ball of my foot and created a foam support to help with that until I get firmer shoes.

He was very cautious in promising results from the treatment, but said that it does help a lot of people. I may not get a 100% reduction in pain. I told him I would take anything at this point.

From what I gather this will be a multiple-session event. The only downside is the traffic getting to the office. I just hope I can get some relief and start walking more normally. As a bonus, I get to go shoe shopping!

30-Day Project: February Wrap-Up/March Project

30-day Project

Hahahah. Oh holy hell was February a complete failure. I think I stitched maybe 7 days total. Which is terrible. I had projects I wanted to finish if I was going to start selling them on Etsy. It’s not a the world’s biggest deal obviously, but crap. I did finally frame things I had finished. I feel like I should get some credit for that.

My goal for March is to journal every day to sort of track how my body feels from day to day – back pain, leg/foot pain, stomach issues, etc. – and see how my activity, eating, and sleeping affect how I feel. A friend does it and while hers is a lot more detailed than mine will be, it’s a good start.

It’s not exciting and don’t worry, I won’t post the day to day in here. That would be terrible of me to do.

While I’m here, I may as well give a quick update on my leg/foot. I still have a bit of pain and my gait is totally screwed up. I walk with my foot turned out and I don’t step all the way through because of pain that happens in my foot and achilles. At the January 6 appointment with the surgeon, he acknowledged that due to the Achilles lengthening, there could be some inflammation and scarring in there that are causing pain and making it difficult to walk. He referred me to a doctor to get an extracorporeal shockwave thing to help break it down and hopefully help me walk. Unfortunately, the first appointment that doctor had available was in mid-March. So, in a couple weeks I’ll see him and get this sorted out. Maybe.

I had an MRI yesterday to make sure there isn’t any nerve entrapment that’s still causing pain down my leg and into my foot. I doubt there is since they did an MRI right after the spinal fusion that caused the foot drop and there wasn’t any then.

I do attribute some of the foot/leg nerve pain issues to the work done by the physical therapist after the surgery. He can pretty much suck. A lot of the other nerve issues had resolved, but NOT in my lower leg. I do wonder very seriously if the foot drop would have resolved if I had never seen him.

At any rate, that’s where I’m at. I’ve had some days where I wasn’t having a ton of pain and it was amazing. I think it was over a week! Still had some pain, but nothing like it had been. Then yesterday I was reduced to a sobbing mess because my back, hips, leg/foot, AND arm hurt (thanks cellulitis!). Today is better. I chalk that up to getting a fuck ton of good sleep. Yay for melatonin!

Anyway, I hope you all are well or if you’re not, that you get there soon!

 

(Last?) Foot/Leg Update

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I went back to the doctor this morning for my boot follow-up. NO MORE BOOT!!! The one I got before I left broke while we were in Brazil so Mr. Lyndsy had to go out and find one for me. The one he picked up is much less cumbersome than the one we got here, but holy crap, they’re all annoying. And man, they develop one hell of an odor.

In an interesting twist, the doctor doesn’t want me to do physical therapy. He’s concerned that they’ll pull my foot down too far and ruin all the work he did. I’m not really supposed to do any sports either. Not really an issue. I do want to go back to the gym, but I don’t see how this will be an issue for that.

His big point is that what I wanted is to be able to pick up my foot and I can. I’m curious to see how my foot will feel walking in a normal shoe rather than the boot. I know I need to get some shoes that have more arch support in them. Neither of the boots had any and I could feel a lot of pain in the arch.

My ankle gets a little sore when I walk for a distance so I try to break up any walking I do. I’m working on being able to bend my toes without picking up my foot. Not sure how thats’ going to go.

This journey isn’t at a complete end yet, but the worst of it should be over!