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What is Patience?

3/28/2013

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Patience - an ability or willingness to suppress restlessness or annoyance when confronted with delay.

I use this word often when describing a life with Lyme disease. Growing up I never had patience. I was an instant gratification kind of girl, and my parents obviously enjoyed that wonderful quality. In many ways it was positive because I was always a hard worker. I would put my mind to any task and figure things out ASAP to get that quick gratification. However when I had to translate this part of my personality to Lyme disease it proved to be quite a hindering quality.

There is nothing fast about Lyme disease. By the time you catch this chronic disease it has already invaded multiple organs & body systems. At that point no treatment will be fast. Not only that but no recovery to the organs/body will be fast either. Step 1 is accepting that. I think it's been a hard road for me, but I have accepted the patience needed for Lyme itself. I have been able to not set a time line for myself & respect my body enough to let it take the time it needs.

When it comes to things outside of Lyme I am 100% impatient. I will be honest, I am mad... I am frustrated.. I am at a loss for words at how overwhelmed I am about this C Difficile set back. I have cried in sheer frustration so many times since the end of January when this nightmare began. I had to stop treatment just as I was improving and deal with the mess of this scary & difficult infection in itself. I was so angry for so long, because C Diff is its own beast. It's not an easy infection you get & just quickly move on with. This is an infection that is fatal, and has to be taken care of 100%... Except its tricky because it contains spores & a biofilm protector, and even let's out different toxins. This damn infection is hands down the most complex stomach bug I have ever encountered. So thanks to that I had to halt treatment suddenly 2 months ago, and I can't start back until I am completely cured. Since C diff is so powerful I can't possibly risk treatment weakening my immune system to let it take over my body. I can't mess around with a superbug that accounts for over 30,000 deaths a year. No thanks.

But this is where my lack of patience comes in. I worked so hard for so long to get relief, and to get a sliver of my health back. In January I felt like I had made big strides. I was celebrating 2013 & ready to keep on keeping on. And now, here I sit, almost April, and I feel my old symptoms creeping back as I helplessly wait to get back on treatment. I just have to sit on the sidelines while I watch my body crumble & regress little by little. Can you imagine the frustration?

Every 2 weeks we have re tested for C Diff, and every time my mom delivered the bad news it took a piece of my heart. It's like this infection came in & began to chip away at my soul. The pain of the infection itself, the pain of the side effects of treating it, the pain of the Lyme disease flaring... None of it combined even comes close to the pain of being helpless in it all. I know in the big picture this is a small moment in life. In the grand scheme of things God has a plan for me, and unfortunately for me to reach my ultimate outcome I had to travel some muddy waters in the process. I know life isn't always rainbows & butterflies, I preach that every day. So it certainly isn't a lack of understanding this that leads me to my frustration, it's the lack of patience.

I believe as humans we have a gas tank, so to speak, that is full of Patience. As we travel life sometimes it requires more fuel, other times we get a break and it "refills" our tank. For me, I feel as though my patience has run dry... I am siphoning extra patience anywhere I can get it! But, at the end of the day I look to God to fill me up.

For everyone who reads this blog & prays for me I would like to end this by saying thank you. This infection could certainly have been much more cruel to me than it was, and I know it's through the power of prayer that it hasn't been. I feel really superstitious about saying something has improved, because its almost like as soon as I say it that thing comes back. So, I don't want to get ahead of myself, but I have ever so slowly been inching in a positive direction.

C diff has a "post" C Diff phase which is where you are clear of the infection, however the stomach lining is still damaged, so until it heals you will still have symptoms without the active infection. So, because of that, it's hard to say based on simply symptoms that its "gone." That diagnoses is left up to the lab. Next Wednesday I'm due for another test to check so I will be praying extra hard.

Much love to everyone.

Xoxo,
Christina


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C Diff.. The infection that likes to linger

3/20/2013

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You know guys, this c diff is no joke. I really hope and pray this is the first and last encounter that I have with this lovely infection. I never dreamt that 6 weeks later I would still be here battling it... It's one tough cookie to get rid of.

I recently started taking a medical grade probiotic with 450 billion strains of good bacteria per packet. And continuing with the Florastor. I went back and forth with trying Vancomycin, but the negatives outweigh the positives. There are so many risks that come with it, and it kills all good bacteria in your stomach too, so you're kind of left worse off then when you began. But I made a promise to myself that if by a certain date I am not better then I will have to bite the bullet.

Overall symptom wise I have improved, so that is encouraging. I think you have to judge a lot by how you actually feel. And compared to the beginning of this mess I feel much better, just not all the way there. And the way the tests go for c diff, even if you have 1 single spore of c diff, it will pick it up as positive. So it doesn't necessarily mean its as bad as it was before, but it does mean its not 100% gone. I would just hate to take all the hard work and progress with probiotics and throw it down the drain with Vancomycin (which may not even help). A lot of c diff sufferers have to take 2-3 rounds of Vancomycin, and even then have a hard time tapering off of it without having a flare. It just doesn't sound enjoyable to me & everything I read from people's experiences is so negative. It's like eek... No thank you. So hoping and praying I can take care of this naturally!

Thank you to everyone for your constant prayers and support, I can't wait to post when I say it's finally gone! That will be a wonderful day!

Until then, I hope everyone has a wonderful week.

Xoxo,
Christina

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VSL #3 Coupons

3/13/2013

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Hello all! Today I received VSL #3 probiotics to take for my C. diff. These are the strongest medical grade probiotics & I have heard nothing but amazing reviews about it. There are two strengths, the Regular (450 billion units) and Junior (250 billion units).

These probiotics are amazing, but come with a hefty price tag. And today I got a packet with a lot of $5 off coupons for both the regular & the Junior. If anyone needs coupons please message me & I will mail you some! These are paper coupons so that can only be used IN store, and not online.

Ill keep this updated on how it's working for me. Hopefully it's all it's chalked up to be! :)

UPDATE 07/2017

I still have coupons. Although this is an old post please email me if you would like some cskova01@ladyoflyme.com
... PLEASE make sure you email me. Some people just leave a comment on this post and I end up missing it. I want to help as many of you as I can so an email is the best way to touch base. Since these are paper coupons please email me with your address so I can ship them to you.

Xoxo,
Christina

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Tips for a good blood draw: small and difficult veins

3/4/2013

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If you typically have trouble with blood draws (multiple pokes, small veins, difficult veins etc) you have come to the right place!

Having Lyme (and other illnesses) comes with lots & lots of blood tests. Things are constantly changing in the body & blood tests are usually the quickest way to detect these changes. Before getting diagnosed I had many years of doctors trying to figure out what was wrong...and that came with many many tests in itself. If I had to guess I would say on my road to diagnosis I easily got poked for blood 200+ times. The high estimate is due mostly to the fact that I have rather small veins which are difficult to hit/find. There would often be 3-4 missed attempts before success, and all the missed tries resulted in needles poking & prodding, sometimes even bursting a vein. This can cause veins to build scar tissue and callous over, which can make that spot/vein unusable.

With that being said, I know this is not an uncommon issue. A lot of people fighting various illnesses also struggle with their veins and getting a good blood return. It could be due to small veins, or it could be that the veins have been poked so many times they are getting tired of it.

Since I have always had trouble I went looking for tips online. I thought surely there must be something out there, but much to my surprise there was almost no information relating to this topic. So I wanted to put some tips I recently collected all into one place. Hopefully this will be easy to find for someone who needs it in the future!

1. Try doing curls with dumbbells. These by no means need to be anything extravagant. Maybe 1-2lb weights for a few minutes a day. You can even do this in bed. When you build these particular muscles up it pushes the veins up to the top of your skin & does 2 things: 1) makes the vein easier to access 2) makes the vein more plump & less collapsed. A common issue with veins if you are dehydrated, or if they are overused is that they collapse. Having the muscle built will help combat this issue.

2. Get as hydrated as possible. I know it's not always an option, like with me I get an IV when I'm dehydrated due to outside forces. But if it's optional and you know you are getting a blood draw try to get 2 liters in the day or two before to help. Hydrated veins mean more plump veins.

3. Put heat on the vein. Most doctors offices don't have this as an option, but heating up your vein helps a great deal by dilating the blood vessels & getting the vein to plump up. Since I get blood drawn at home I learned I have to take a hot shower beforehand since it gets everything perked up & going. I also have the ability to put a heating pad on my arms for about 30 minutes before. However if you are going to the doctor I highly recommend buying these "Hot Hands" which you crack & they release heat. Trust me on this, you will need these with you. They are ready any time and can be taken with you to place on your vein.

4. Don't plan a blood draw first thing in the morning. Veins are much more flat in the AM hours. If you do have to get something first thing in the morning then I recommend making sure you eat a full breakfast & take a hot shower beforehand to prep.

5. It can also help to gently slap or massage the vein right before the draw to get the to plump up. Key word here is gentle. After the nurse puts the tourniquet on your arm, it might help to pop it up.

Okay, those are the 5 tips! The times I had much better success with my veins were times I followed those guidelines. This last time we tried to start an IV I did none of the above & it was a hot mess. My arm went through a lot and ultimately no IV was started. I certainly learned my lesson since then! So if you are having trouble give these tips a try, and hopefully the process will be a bit more smooth.

I hope this information was beneficial to some of you. Have a great week.

Xoxo,
Christina

UPDATE:
This is a popular blog post, and as I have continued to have a lot of blood work throughout the years I wanted to let you all know that these tips have continued to serve me really well! Especially taking a shower and using hot hands on my veins, those two are the biggest contributors to success. 

However, I have an important update for those of you who struggle with either of these complications:
  1. Veins rolling 
  2. Useable veins are just difficult to find, but otherwise can be accessed okay (typically on darker skin tone)
My issue is problem #1. Often times my nurse will find a vein and it will be plumped up and ready to go, but when she puts the needle in the vein rolls. This is a really common issue that is frustrating because no amount of good prep can prevent it. I have some veins that roll like crazy, and unfortunately they are my best veins right now because the others have been overused. 

Enter, VEIN FINDER! These gadgets used to only be used by certain hospitals and they were very pricey ($3,000+). However in recent years they have made them compact and affordable enough for the average Joe. Most hospitals and blood draw centers do not have these on hand, which is upsetting. But, I found one that not only helps find the vein via a special illuminating red light, but it also holds the vein in place so it doesn't roll! It's targeted for sale for nurses, EMS workers and the like, but if you are someone who has to get many sticks due to a chronic illness, cancer, dialyses etc, then this is worth its weight in gold. And it's not even outrageously priced! This Vein Finder perfectly holds the vein in place so it doesn't roll, and is magical. Even though I know exactly where my veins are this has helped make difficult sticks a rarity. I wanted to share in case anyone is in the same boat!

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