Seizure dos and don'ts!

Do you know what to do if you witness someone having a seizure? Well here are some tips that I've learned since my epilepsy diagnosis. Keep in mind that I am by no means a specialist nor do I play one on the internet. This is information I have been given by my doctors and from The Cleveland Clinic's Guide to Epilepsy.

Seizures are pretty common. Chances are that you will witness one in your lifetime. You should know what to do if that happens!

DO!

• Try to stay calm!
  
• Put something soft under the person's head to cushion in. A pillow is ideal but in a pinch you can use a jacket, blanket, or something similar.
• Move anything near by that the person could injure themselves on.
• If you can, roll the person onto their side in case the vomit.
• If this is a first seizure for the person or you don't know call 911.
• If this is not a first seizure you may not need to call 911 unless it lasts more than 5 minutes, the person stops breathing, or they are injured during the seizure.

DON'T

• Never try to restrain the person! You could accidentally injure them or yourself.
• Never try to put something in their mouth so they won't bite or swallow their tongue. You're more likely to get bitten than prevent an injury to the person seizing.
  
• Don't leave the person alone. After they come around from the seizure they might seem totally aware but they could still be post ictal. This is a period of time after a seizure but before a person is completely aware. My post ictal period lasts for the entire day after a seizure! I act normally but will have little to no memory of the day later.
  

There are many different types of seizures. They can range from someone just staring off into space and being unresponsive for a few minutes to the full blown tonic clonic (formerly known as grand mal) seizure that you typically see on TV shows and in movies. If you have a body part that just won't stop moving on its own, it could be a seizure and you need to get looked at.

I hope that this information is useful if you ever see someone seizing. It is a very scary thing to see but you can make it easier if you know what to do!

Update.

Hello out there in blogger land! I hope everyone is doing well in the new year.

First, I appologize for not blogging more, I know I promised I would a while back. The fact is that not much has gone on. I've been doing well, had a slight cold last month but it was no big deal. I've been snow boarding a couple of times. Last time I did really well with the altitude! YAY!

I'm still on treatment for MAC, its coming up on a year. I have a CF clinic appointment next month where I'll give them a sputum sample to culture. Cross your fingers that its still clean for MAC.

I have been seizure free for exactly 13 months! That is amazing! I know that I could still seize at any time, but the fact that its been so long is very encouraging. I could legally drive now if I wanted to (but I don't). I still try not to use the oven when no one is around and follow other precautions to keep myself as safe as possible in case I do seize.

Speaking of seizures, I have been meaning to do a blog about the dos and don'ts if you witness someone having a seizure. There are a lot of myths out there!

Ribbit!

Thirty!

My birthday was last week. I'm 30 now! I don't know a whole lot of women that we ok turning 30 let alone excited about it. But I am. 30 is huge for me. My CF seems to be pretty moderate. But when I was born the odds were that I wouldn't even get out of high school. So much for that!

The treatment of CF ha come a long way, and I give full credit to all the people out there who have done that. But part of it also that I'm not done here yet. I love life. I have an amazing family, a wonderful guy, and the best friends a person could ever hope for. They are the reason I keep at it, no matter how hard it gets or how crappy I feel. They need me, but I need them even more. Thank you all.

The best birthday present I could ever have is just having another birthday.

It all comes at once.

Why is it that I can go for months without setting foot in my hospital (other than to pick up meds) and other times I go months where I have at LEAST one appointment a week, maybe more.

So lately my pain has been REALLY out of hand. I got the stuff done to get seen at the pain clinic at UW again. There was some drama the day before the appointment that I just don't want to go into because I was really upset. Anyway, the doc flat out told me that she doesn't know if there is anything she can do for me. Are you fucking for real!? She's a PAIN SPECIALIST....supposedly. Of course she wants to consult with all of my other docs, which I expected. I go back to see her tomorrow to see if she came up with a plan. In between these appointments she referred me to a psych. Of course she told me it was because she wants to see if the shrink has any ideas for meds that might help me. But of course its because she fucking thinks I'm drug seeking. If she wanted ideas she could review my history with the shrink on her own. Whatever, I'll play ball for the time being. I do have a lead on another pain clinic in the area though.

I've been having a lot of "I think I might puke" so I went in for blood work on my liver. The ethambutol I take for the MAC can cause liver issues. I also got a scrip for zofran, oh how I love thee. The blood work came back and one of the levels was elevated but of course when I asked what it measures exactly the dumbass nurse couldn't be bothered to explain it to me. And I was out and didn't have a pen with me to write down which test it was so I could look it up myself. She's so annoying.

I went to my primary doc's office about pelvic pain. I swear if I still had my appendix I would have been in the ER a long time ago thinking I was going to die soon. The doc dug around in my lady bits (for the THIRD time this year!!!) but since she didn't feel anything out of the ordinary so she didn't order an ultrasound or refer me to GYN. My head hurts. Normally she's really cool and listens to me. I'll ask my CF doc to do the refering. Or maybe even the pain doc tomorrow.

Anyway, that's about it for me. I hope everyone out there is doing great!

Chronic Chicks

What do you get when you have 3 women, 1 double lung transplant, 1 cancer warrior, 2 CFers, 1 epileptic, 3 ports, 2 lawyers, and 1 cosmetologist wanna be? You get me Piper and Lisa hanging out together!

My cyster Piper, who is from NYC, was out here for a wedding and she was kind enough to make time to get together with me and our friend Lisa. I have blogged about both of them before. Piper had her transplant a little over a year ago, Lisa is the wife of a CFer who passed last year and now she is fighting breast cancer (and looking wonderful while doing it!).

So we all got together lunch. We updated each other on our current medical statuses (stati?), compared ports, told hospital horror stories, told good hospital stories. Of course we also talked about stuff not related to our medical issues, pets, family, significant others, and plans.

Lisa had to go to an appointment in the afternoon which left Piper and I to do whatever. We drove through Seattle a little bit and headed down to Pike's Place Market.

You can't come to Seattle and not go to the market, its a law. We didn't explore the inside of the market because its always crowded and Piper is, of course, immuno suppressed. We did see the very first Starbucks though. I don't know why that's such a big deal but everyone has to see it. There's always a line out to the street. A little further down we came accross an ice cream shop and Piper treated me to a sundae.

As we were walking back up the hill to the car Piper commented that I seemed like I was handling it well, not coughing much. Which was true, I feel good since starting my MAC treatment, but I couldn't help envy Piper because when she got to the top of the hill she could complete a full sentence without taking a breath, or three. When I see my friend who are post tx and doing well it just confirms for me that when my turn comes up I want it. Sure, there are no guarentees but I at least want the chance to feel good. I never feel really good these days. There is pain, shortness of breath, stomach aches, naseau, piles of pills that don't seem to do much of anything, treatments that are unpleasant at the least and very painful at the worst. Its getting harder and harder to maintain my baseline. I know its only a matter of time before I start to decline and things will get even more complicated. So seeing Piper inspired me. I'm going to keep doing what I have to in order to keep these tired lungs as long as I can, but some day I hope to have fresh ones.

Anyway, where was I? I had to stop by my hospital to get my weekly amikacin so Piper said she would take me there. So she even got a glimpse of my hospital while she was in town! While we sat waiting for my number to be called I pointed out staff that I recognize and Piper noticed a CFer. I got to thinking about it later and I realized that I have been admitted at the same time as that CF patient. I don't know who she is though, she didn't seem like she wanted to talk when were on the floor together.

After the pharmacy it was time for me to head home. Piper dropped me off at the bus stop and I got a picture of us before we parted ways. I am SO glad I got to meet her in person finally. She has been a big source of inspiration, friendship, understanding, and support me. For all of that I thank her very much and I hope that she has benefitted from our friendship half as much as I have.

Rough week.

What a week this has been. Monday was pretty uneventful. On Tuesday evening I had a fundraiser at a local burger joint. We raised $250 for the CF Foundation.

On Wednesday I had an appointment with my diabetes nurse practitioner. I've been struggling with my blood sugar. Abx make me run low, and finally my NP acknowledged this. She started me on a long acting insulin which should reduce my need for the short acting insulin that is making my sugar bottom out. This means I should be able to eat like I'm supposed to between breakfast and dinner and not have to stress about my blood sugar so much. After that I went to have some blood work done and pick up meds.

The lab screwed up some of the blood work. They sent it to be spun when it wasn't supposed to be. So while I was waiting at the pharmacy I was paged back to the lab. The redrew the screwed up tubes. So now I have matching hemotomas on my arms.

Then yesterday....fucking yesterday. I was scheduled to have my port flushed but Missy kitty wasn't doing well. She has been sick for a while but yesterday she got worse. We knew that she didn't have much time left so we decided to get her put to sleep. I called my nurse and left a message telling her I would have to reschedule then we went to the vet.

Missy kitty was pretty old, probably in her teens. We didn't want to watch her get worse or have her suffer. I really feel like we did the right thing for her, but just having to make that choice is hard not to mention losing your friend. J and I both got to say our goodbyes to her. When I held her for the last time she purred. She hadn't purred much in the previous few days. J and my mom both said that she was telling me she loved me. We were not with her when they did it. I was there when my dog died and I was hysterical afterward, I didn't want to watch my sweet kitty go.

A little while after we got home the doorbell rang. My nurse didn't get my message. Since she was here I just let her go ahead and access me. Only my port wouldn't return blood. She thought she was missing it. So today another nurse came out to try. She got it in one shot but then there was no blood return. That means yesterday the nurse was probably in too. So now I am accessed while I wait to hear what the all knowing IV people want to do. Probably TPA, an enzyme that dissolves clots.

This week can go fuck itself.

Bad Froggy!

Ok, so I know that I haven't blogged in 6 months, BAD GIRL! Sorry 'bout that. Its just that things have been stressful and I just didn't feel like talking about it. Most of the cause of this stress is directly related to money and the fact that I have none.

Anyway, let me update you all on the health stuff.

I started treatment for my MAC in early March. So far so good. I take 1000mg of ethambutol a day, that's a very strong antibiotic normally used to treat TB. I also take 250mg of azithromycin, a good broad spectrum antibiotics. Then there is inhaled amikacin 3 times a week. Not a bad regemin at all. I just had sputum cultures taken a couple of weeks ago so I am just waiting for those to grow out and see if there are still MAC buggies in there.

I am feeling much better since starting the MAC therapy and I haven't had to go back on IV antibiotics since I finished at the end of January. YAY! My energy level and appetite are up from 3 months ago, my lungs feel clearer and I don't get short of breath so much.

I have been struggling a bit with my blood sugars. Since the begining of the year I have needed less and less insulin and its become a lot harder to manage things. I keep taking too much insulin and then chasing lows all the time. So, today I saw the NP at the diabetes clinic who works with a lot of CFRD patients. She is trying me out on some long acting insulin to see how I do. This will hopefully make it easier to keep my blood sugar stable and reduce the amount of fast acting insulin I am taking so that I won't have so many lows. We'll see what happens. I am also scheduled for a 3 day blood sugar sensor test in August. This will show how this new plan works and what might need to be changed.

So that's about it I think. I'm broke but my health issues seem to be looking up. I promise to try and do a better job of blogging.