Steep Downward Slide

Please allow me to acquaint you with the progression of my blood sugars over the 4 hours since discovering my site was kinked:

I think my site is working perfectly fine now.

It doesn’t help that my blood sugars tend to crash following an IVIG infusion. The last time around, I spent the day of in bed sleeping and I spent the day after adjusting the pump. I’m in for an awfully long night. Good thing I can spend all day tomorrow sleeping.

After seeing that lovely blood glucose reading of 48 mg/dL, I did what any normal girl who had her sugars drop 355 points in 4 hours would do:

Mmm carbs…

I’ll be honest, after 8 months of low carb I really didn’t enjoy those Doritos and Faygo as much as I used to – and it has nothing to do with the fact that those chips should be Better Made ones. I’ve read about people losing their taste for carbohydrates after going LCHF, and I’m now wondering if I am one of those? In a past life, that can would have been gone as well as 3/4 of the bag…well, I only drank 1/3 of it and I stopped at maybe 2 oz of chips – twice the serving size, but way less than I would have eaten a year ago. Blood sugar right now is at 73, so I’m at least at a perfectly liveable state, the temp basal got cancelled and that extreme 10 unit dose of Novalog at 7 this evening in an effort to drop the sugars, I have no idea how much is left active because I didn’t deliver it through the pump. I’ll probably be up for another couple of hours just to make sure I don’t crash. In the meantime though, I’m uploading the pump settings since I’m curious to see what the IVIG will do to my settings so that maybe I can anticipate it next month. I seem to go on a dip and then I start raising my settings after 2 and a half weeks or so when I start running out of Ig because I’ve started out with active infections and I’m having a tough time fighting things again. I want to be able to have data so that I can anticipate what I need to do for next month’s round.

My life would be so much easier if illness didn’t spike the crap out of my blood sugars.

Of course, I will be doing this all over again when I start on the SCIG, but whatevs. The more data, the better. I do hope that the SCIG will keep me on a more even level so that I don’t go through the peaks and valleys with the blood sugars and the peaks and valleys with my energy levels. Because last month was extreme. I’m hoping that this month, like the infusion, will go better.

And here I was trying to add a “Diabetes” tag to the post, getting pissed off because I am mashing on the enter key and it’s not adding, yet I can add everything else…until I realised that “Diabetes” was the first one I put in…yeah, I think it’s time for me to go to bed…

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Take Two

Went in for my second IVIG therapy today, and it was a vastly different experience than my last one. Instead of curling up in a ball, sobbing, shivering and in quite a bit of lower back and knee pain, I made it through this round without a hitch. No pain, no feeling of cold, not even a headache. I still have yet to develop one, which is amazing. My mother thinks that it’s because this time around my body is a little more used to it. A lifetime of zero immunoglobulin and then suddenly pumping 25mg of the stuff in…makes sense that it made me feel awful.

However, what did make me feel awful…how about some serious high blood sugar levels. Woke up well over 300 this morning, so I shot up via syringe. Added a bunch more before breakfast mostly because I mistakenly stacked doses, but knowing that I was fixing to be pumped with 5% dextrose solution, I didn’t worry about it. Ran some errands, found that my blood sugar was high again, went to the bathroom and discovered that my set had come disconnected. So I snapped myself in, bolused through the pump and figuring that everything was fine, went on my way.

I spent the rest of the afternoon pumping insulin through a syringe until I ended up logging a 403 after a supper that consisted of carb-free crab cakes and sauteed zucchini that could not have had more than 2g of carbohydrates in the entire meal. So I decided the site had gone bad after less than 24 hours in, so I went to change it out.

Well, that explains a lot…

Yup, the cannula kinked. That happens an awful lot. It makes me sad, since it makes it so that very limited insulin comes out of the system, sending blood sugars through the roof. So, I sighed, and busted open the box of Medtronic Mio infusion sets that I had received in my last order because I had heard that they didn’t kink as much and I finally remembered to change. Added bonus, they’re bright pink. So now that’s in and I’m hoping that my blood sugar will come back down.

But all in all, the infusion was a success. Minimal complications, and the cough I had been developing the last week has magically disappeared. With any amount of luck, over the next three days my lungs will clear out and I can actually run. Which would be excellent, seeing as I’m doing my first 5K on Saturday.

I will say though that while I don’t exactly look forward to IVIG sessions, I do look forward to feeling well afterwards. Never before had I known what it was like to feel healthy, and I’m well on my way to feeling completely normal for the first time in my life – or at least as close to normal as one can feel with type 1 diabetes. I have always wanted to be able to run, and my lungs always burned like fire whenever I did. Since starting IVIG, I have been able to do it with minimal chest discomfort – in fact, the pain comes more from my out-of-shape thighs and the knee that I had an ACL reconstruction done on just before my 15th birthday.

Today, I feel like a whole new woman. And I’m looking forward to going out and exercising tomorrow. That will be my last run/walk before the 5K. And I can’t wait. 🙂

Back to Work

I won’t lie, there are times I wish I could just be a stay-at-home mother. I would be quite happy taking care of the baby and the house, and cooking and making sure laundry gets done and keeping track of everyone’s schedules and appointments.

I also know that I would lose my damn mind if I did that.

So, I went into work today for the first time after the infusion. It was…well, I survived. Sure, I was still feeling somewhat woozy and the 9 and a half hour shift was probably way above and beyond what I can handle anymore, but whatevs, I survived.

I did, however, get banned from schoolwork tonite by both my husband and one of my coworkers. I have been ordered to relax. I know I need it…but these 150 pages of 1491 aren’t going to read themselves. 

I will say though that I think that the only reason I’m able to get anything accomplished right now is because Lord Imp has taken the baby over to his mother’s for the week so that I can relax and only have to worry about myself. Because he knows that even with him around, if the baby is in the house I am going to spend all my time taking care of her and no time taking care of me. As much as it pains me to say it, he did the right thing. I feel incredibly guilty that he’s dealing with her, especially since she’s been incredibly fussy lately. But I can’t deny that I am incredibly grateful for the alone time to focus on getting myself back up and running again.

But I do wish he were here though. After 9 and a half hours on my feet, a back massage sounds excellent. Especially since my back is still a little achy after the infusion…

It’s Working

For the first time in what feels like my entire life (and probably is), I have woken up not hacking up a lung. 🙂

It feels weird, like a part of me is missing. But weird in a good way. I’m not quite to the point of being able to take a full, deep breath yet, but I know that I am getting there, and fast. 

I think that I may actually try running in a few days. But not today, I’m still feeling woozy.

I also woke up with a fasting blood glucose of 70. Eek! So excited, I haven’t done that in a while, either!

I must finally be clearing out all the infections that have been going on in my body over the years.

Granted, the high-dose antibiotics I’m now on are also contributing to this. But I don’t care what is working, all that I know is that…

It’s working.

In the meantime though, I’m going to have some breakfast, chug down a couple glasses of water, and then go back to sleep. Because I’m still dehydrated and woozy.

Live From the Infusion Clinic

Whoo, I guess I need to update y’all.

So I got a phone call yesterday telling me what I pretty much already knew: they think I have XLA. Oh goodie. I got written another lab for a genetics screen to see what’s what, spent some time talking to the doctor about what’s next, and he lit a fire under the infusion clinic. Sure, I had to physically go there to set up the appointment, but whatevs.

So I went and ran my errands, visited what felt like 1000 doctor’s offices updating phone numbers and signing releases of information for Baby Imp, got myself a piece of cheesecake from a local cheesecake shop (because fuck low carb, that’s why) and got my daddy his father’s day present. Then I ran Baby Imp out to my mother in law’s so that she could watch her while I went and did this.

So now I’m sitting here in the infusion clinic, alone, bored, and scared. I’ve already called my mama up sobbing, she should be here shortly. With saltine crackers and diet ginger ale. 

Because fuck low carb. That’s why.

That and I’m feeling a little queasy.

Surprisingly, despite being mixed with a 5% glucose solution, my blood sugars have actually been dropping – pretty rapidly, as a matter of fact. Which means one of two things is happening:

1) The supercharged high-dose antibiotics I was prescribed for the ear infection are starting to kick in.

2) The immunoglobulin is getting straight to work.

A combination of the two, possibly?

It started off all right. They are titrating me because I am new to this. And holy hell, was it not a pleasant experience. The first half hour, I was perfectly fine. The second, my chest started hurting a bit. I was checked out and determined to be fine, it was probably related to the chest congestion I’m currently rocking. Then they put me up a third time, and things got SUPER uncomfortable. I started shivering and my back and legs started hurting and OMG it was awful.

This was when I called up my mama in tears begging her to get here.

And then I checked my blood sugar and saw a 59. Woo, that’s not good. Especially since I had turned the pump off an hour prior after an an 89 and about a unit of active insulin. That was when the shivering started, I checked my BG just in case it was because I was low (that has been known to happen).

So I toddled myself over to the nurses’ station and was shown where to get me some apple juice and crackers. Total hypoglycemia correction overkill, but right now I really don’t give a shit.

Now, I feel mildly functional. Minus the knee pain, lower back pain and headache. I should probably get myself some more water.

But mama’s coming with ginger ale. And I like ginger ale. 


 

 

I just realised it’s Friday the Thirteenth.

That Impossible First Step

I will admit, I had one hell of a time getting out for my walk this evening. I had been feeling like death all day, dizzy and lethargic despite having blood sugars what most endocrinologists would classify as normal. But not having gone out last night, I knew that getting out tonight was a necessity, even if I only went for a mile.

While I was out, I did a lot of thinking. The air was comfortable and had the lovely smell of the woods before a summer rainstorm. Without a doubt, that is my favourite smell on earth, earth and fallen leaves absorbing the humidity and in return giving out the smell of new life coming from the end of another. I thought a lot about what I was facing, what I am going to be in for during the next few months. I have to admit, I’m scared. I’m scared half out of my mind. I’m scared of the side effects. I’m scared of not being able to care for Baby Imp on my own. I’m scared that I won’t be able to finish my education. 

I’m scared of what the future brings.

But despite my fears and desire to just say “fuck it” and turn around and go back to bed, I am still putting my foot forward. Just like I did tonight with my walk, I am going out and doing something that I know is going to hurt, that I know is going to suck, knowing that it has to be done and once it is I will feel better.

And you know what? Once I finished the walk, panting and coughing due to the immense amount of chest congestion I have, I realised that I do feel better. After a shower and a dollop of lotion, I felt even more so. I feel like I accomplished something, I feel pretty and I smell like a beautiful day (quite literally, since my lotion of choice is Beautiful Day by Bath and Body Works).

I almost feel healthy.

Despite not really wanting to, despite feeling awful, I still took that impossible first step out the door and went on that walk. It was hard, it hurt doing it, but I was able to enjoy the smells and sights along the way. And when I came back, I found that I truly felt better than I did when I started. I know this is how it is going to be with IVIG. I know it’s going to hurt, I know it’s going to make me feel crappy, but I know that I will eventually start to feel better than I do now.

And this is a walk worth going on.

Rolling the Ball on IVIG

So I talked with the nurse at my immunologist’s office today. Apparently, the labs came back “not where we would like them,” and they want to start intravenous immunoglobulin therapy. I really wish she had been a little more detailed or I had thought to speak with the doctor about it, because he’s much more of a straight shooter and I appreciate straight shooters. But anyway, the plan right now is to start IVIG here really soon, do that for three months and then go into the office to discuss starting subcutaneous immunoglobulin therapy.

That conversation was somewhat amusing in my opinion:

“So, you’ll be given it through the skin, kind of like a diabetic. Now it’s a lot of needles and poking and a lot of people have problems with that especially giving themselves the needles. Do you think that is something you’ll be interested in?”

“Well, it turns out I am a diabetic, so needles really don’t bother me. As a matter of fact, I’m on an insulin pump so I know what it’s like to be hooked up to a machine 24/7. So yeah, let’s do it.”

I wish I could be hooked up to my insulin pump for only 2 hours a week like it is with the SCIG. That would be pretty sweet.

But for now the plan is thus: three months of IVIG in the hospital so that I can be monitored. Assessment after the third infusion, then getting the ball rolling on SCIG.

Sounds like a plan, man.