Oh boy it’s been a long week.

It’s Friday night and I’m just getting around to starting to write.

Ah, shit.

That’s what I get for being busy.

Monday this week I had my primary care appointment.

It went really well.

I updated her on how it was going on the 2.5mg’s of Abilify.

I’m having to break a 5mg tablet in half now.

I’m no longer peeing my pajama pants at night – which is amazing.

Because I was on the 5mg.

(further on in the week I had TWO FUCKING ACCIDENTS, I’m not happy about this at fucking all. but I’ve been exhausted, so I don’t know if I was unable to wake up to use the bathroom until it was too late or what, but it’s unacceptable. So I called Dr Bandy’s office – the endocrinologist, and luckily hale had a cancellation for 2pm on Tuesday the 18th. Fuck Abilify. Hopefully he can figure something out becuase I’m not coming off my Paliperidone, and I had zero symptoms with the high prolactin levels and traded it for another med and pissing the fucking bed… so….not cool.)

I wake up about two or three times in the night to use the bathroom still every night.

But I usually get right back to sleep.

It’s annoying, but I honestly usually don’t even remember getting up until I really think about it the next day, so it’s not a huge deal, I guess.

Even though lately I’ve been having unrelated sleep issues.

I’ve been waking up around 3am and not being able to fall asleep for about an hour.

It sucks.

And I don’t know why.

The only thing I can think of is because I’ve been on steroids the past couple of weeks.

And my primary care doctor did give me a refill of the Prednisode too, for my intense pain levels.

Only 6 tablets.

But it’s because all of my procedures have been postponed for now – including my back ablation, until the blood clots have cleared up and I get the okay from the hematologist.

Which is fucking terrible.

But anyway, we’ll see if the waking up dies down here in a couple of days, now that I’m off of the steroids for a while.

Hopefully it does.

Because I don’t think it’s related to the bathroom situation.

We talked about my Topiramate too.

I told her how it’s been working well for my appetite suppression.

I’ve been noticing I’ve been making food at night and putting it away either right after I make it or half way through eating it.

So that’s been an awesome change.

I’ve been eating more apples and peanut butter than anything else.

So that’s good too.

Now it’s Saturday – I know, writing on Friday night didn’t last long, and I did binge on Friday night, like, right after I wrote that.

It’s like sometimes, I self sabotage so fucking hard.

And today I ate a few fucking candy bars.

I know why.

And I don’t wanna talk about it right now.

It’s a fucking thing.

And I’ve gotta stop.

But lately I have been eating less all in all.

I have really been reeling it in. 

Now it’s Sunday.

I keep starting to write late at night and I can’t keep my eyes open so today I started in the morning.

I had the hematologist appointment on Tuesday this week.

It was good.

You know how sometimes those doctors can be so knowledgeable, that they’re assholes?

This guy wasn’t like that.

So that was surprisingly nice.

He asked me seemingly a bunch of random questions about my history – trying to get a grasp of possible clotting issues.

Was I a traveler?

Did I have a family history?

Was I a smoker?

Had I had clots before?

And some other ones that I can’t recall because they seemed out of left field.

But he got on me about smoking – said it doesn’t help the situation at all.

I know, I know.

But I told him I had already quit vaping and he was happy about that.

I told him how much the blood thinners had helped the swelling in my legs.

And how I had been having vein ablations to help with my venous insuffienciency, but the blood thinners had been the most helpful so far, since the vein ablations.

Seemingly more helpful than the sclerotherapies, which had gotten me into this mess in the first place.

But the sclerotherapies have helped my mobility quite a bit.

So, there’s a tie there.

Anyway, I looked at his notes the following day, and he did a good job.

They weren’t judgy or rude, they were straight forward and included everything I had asked him and he had asked me.

The only thing I didn’t like was the “obese” part – but I never like that part.

He was thorough, and I appreciate that.

I sent them to my primary care doctor.

He wants to see me again on October 22nd.

And he wants me to schedule my next follow up ultrasound for the week before, so I did, for the Monday before, on October 12th.

So there’s enough time for the imaging center to get the report over to the oncology office.

I figure that’s enough time, a week and a half.

Even though I feel like that’s a really long time between ultrasounds.

He said they do them 4-6 months apart.

So they’re counting on the blood thinners to do their job.

And I am too.

I got the lab work back today and it looks alright.

There are some abnormal reports, but I did some googling, and it looks like the blood thinner I’m on can cause the lab and blood work abnormalities, so I’m not concerned about them.

On a totally different yet similar note, I had a home nurse visit this morning, on Sunday!

It went well. 

Really well.

He was here for about an hour or so.

He just went through my medications, and diagnoses mainly.

Did a few examination type things.

We talked about what I deal with and what doctors I see, the last times I saw them, and then next time I see them.

He said I was a busy gal with appointments – I said I know, I always am.

He said that he really feels for me that I have to have so much on my plate – that I deal with a lot of frustrating and awful ailments that are complicated and debilitating.

He said he doesn’t understand how I function outside of appointments – that I must find it hard to live a normal life.

I told him it’s maddening at times, and my mental illness doesn’t help the situation in the slightest.

And that I don’t feel like I live a normal life, but I make it work somehow.

And he nodded and said he understood.

He was a really good nurse and I really wish I could see him with my primary care doctor regularly.

He was in really good spirits, was easy to talk to, liked Bruce, and knew what he was doing and talking about.

It was nice that he came to me too, and that I didn’t have to go anywhere.

I’ve never had a home visit before and that was really quite nice.

I really liked it.

I could use more of them.

We talked about quite a few things, and he took my blood pressure, and listened to my heart and lungs.

He said my lungs were clear, which I was happy to hear.

He then took my pulse through my ankles and feet and inspected my legs.

He noticed the pitting edema on my legs and was very concerned about that – especially on my left leg because I am usually wearing a thigh high compression stocking on my right leg nowadays, for the blood clot.

He said that should not be happening.

Especially at my age and with no apparent heart issues besides a mild murmur.

A mild murmur should and would not be causing pitting edema like that, he said.

He said it’s no doubt, due to the venous insufficiency, but that pitting edema itself can lead to blood clotting and he noted that my left leg was discolored as well.

He said that he wanted me to call the hematologist office and get the follow up ultrasound for the blood clot changed to the bilateral legs.

Because he didn’t want something to be missed just because they were overlooking the left leg.

And I told him that seemed like a simple enough change, and that I would call the office tomorrow and get that done.

What I actually did though was email one of the gals in the back office at my pain management clinic, and ask her if John, the ultrasound tech there, could do a scan of my left leg while doing the sclerotherapy follow up on Thursday, the 20th.

I’m sneaky like that.

And Thursday is a lot fucking closer than October!

And then I don’t have that weighing over me the rest of the time the blood clots are too, ya know? 

Then it’s one thing at a time.

She said absolutely, so that’s wonderful, and I’ll see them on Thursday and get that done.

I asked them if my appointment time needed to change, because it may need to and that’s fine if it does.

I’ll absolutely live.

I just hope nothing’s wrong with my left leg. 

I hope everything is good.

It might be worth it to get a second opinion too.

Like when the hematologist does their scan, it might be worth it to have a better and different machine do another scan on my left leg at that time too..

Fuck.

Okay.

I’ll message them right now and copy and paste the email… and least I have that already.

I might need to change a few things in it, but I have the bulk of it. 

I got a response this morning already and Dr Braden’s nurse said she’d pass the information and request along.

Yet another reason to quit fucking smoking.

Because I googled “does smoking cause pitting edema” and it came back with “Yes, smoking can indirectly cause or worsen pitting edema by damaging blood vessels, reducing circulation, and contributing to severe underlying conditions like heart failure, chronic lung disease, or vascular disorders that lead to fluid buildup in the lower legs and feet.”

Fucking great. 

Vascular disorders are exactly what I’ve been going through this past year treating…

With all these vein ablations and sclerotherapies…

And I know I looked it up when I first got diagnosed with the blood clots a couple weeks ago, that what nicotine does is basically make the inside of the veins sticky, so the blood cells can collect easier.

Scary shit.

So, a million reasons to quit.

Anyway, he was super concerned about the pitting edema, and said there was no way someone my age should be having that severe of edema at this point in time.

And I just thought, this is nothing compared to what it was before being on the blood thinners – I probably should’ve told him that, but I honestly didn’t think of it till right now, as I’m writing this.

I’ll tell Dr Rocha – my primary care doctor, and Dr Braden – the hematologist.

I’m wondering if I should set up another follow up with the cardiologist.

Just to talk to her about my legs.

I’ll ask Dr Rocha if I should.

She’ll know.

Man, he kinda scared me about it.

It’ll be okay though.

Anyway, that was really the visit.

He did a memory test.

Where he asked me to remember three words.

And then sidetracked me for like fifteen minutes and then asked me to recall them.

I remembered them!

He gave me hints though, so I don’t think it really counts, hahah!

But it half counts.

That’s the first time I’ve ever recalled the three words!!

I’m proud of me!

Even if I did have hints! 

It was a good visit – I’m really glad I did it, and I’m really glad he came.

I’ll have to be in touch with the hematologist office and maybe the cardiologist office.. I’ll ask Dr Rocha.

But it’s now Monday morning, and the hematologists nurse just called me, like, 15 minutes ago..

She told me that one of my antibodies in my lab work  came back abnormal, and the doctor would like to do a retest in 12 weeks, to keep my appointment with him, and that the lab would be calling me to schedule something soon for that 12 week mark.

Oh.

Okay.

Dang.

She didn’t tell me anything more and I was caught off guard and didn’t know what to ask!

So that was fucking that.

Remember how I said earlier that “I got the lab work back today and it looks alright.There are some abnormal reports, but I did some googling, and it looks like the blood thinner I’m on can cause the lab and blood work abnormalities, so I’m not concerned about them.”

Well, now I’m concerned.

Damnit.

I hate this.

I hate having all of these issues so that I can’t even enjoy a day.

It’s fucking absurd.

And by the way, the whole quitting smoking thing is scary.

And I have got to quit smoking.

How do I let go of a vice I’ve had since I was like 18?

It’s been such a huge comfort in my life for so long.

How do I just abandon it like this?

How do I let go?

I’ve got to let go though.

My Mom gave me this huge piece of tobacco leaf.

It’s organic and natural.

I bought some papers for it yesterday.

I’m almost out of camels.

When I’m done with the camels, I’m gonna roll up the tobacco leaf and get rid of the added chemicals in my body from the cigarettes. 

Then get rid of the tobacco.

Then the nicotine.

It’s a step by step process.

No one will help me medically because I was told that my antidepressant interacts with both of the medications that could be used for smoking cessation. 

So, I’m shit outta luck with any sort of prescription to try and help me quit smoking.

So I’ve gotta raw dog this shit.

So doing a step by step, a slow taper, is my best bet. 

I’m down to five to seven smokes per day right now.

I sloped up and had an extra one yesterday, last night, when I woke up in the middle of the night and couldn’t get back to fucking sleep.

But that’s okay, I won’t do it again tonight.

And I’m not gonna be mad at myself for doing that. 

It is what it is.

I did it.

It’s done.

I quit vaping all together and that’s fucking huge.

I can’t believe I did that so quickly.

And I didn’t start smoking a bunch of ciggs to make up for it either.

It’s not like I started smoking a pack a day when I quit vaping.

I kept it steady.

It sucked.

But I kept it even.

I think I should step outside still, even when not smoking.

Maybe that’ll make me feel better. 

Because it’s the ritual, right?

It’s the enjoyment of being outside and interacting with the neighbors and people that’s half of the addiction.

So maybe I should step outside with sugarfee gum in my mouth every so often still.. 

just for like 5-10 minutes.

Just to give myself that little fix of outside time still.

Maybe that would help ease the antsyness.

Here’s the plan; 5 camels/day for four days, to 3 camels/day for four days, to 3 tobacco leaf ciggs/day for four days, to one piece of nicotine gum every three hours for five days, to one piece of nicotine gum every six hours for five days, to one piece of nicotine gum every eight hours for four days, to done.

I can do it.

Hannah gave me so much encouragement this week in therapy.

She said when I put my mind to something I get it done unlike no other.

She said I have the determination that very few people have.

And I know she’s right.

It’s just that smoking is different.

Smoking’s always been different.

It’s this vice I can’t seem to break.

But I know I can.

I didn’t smoke till noon today.

And I’m not gonna smoke again till 4pm damnit.

– Keren