Sunday, June 26, 2016

Insomnia and Crohns

So for the past 2 years I've had so much trouble sleeping. I didn't think anything could be worse than having Crohns Disease but this one I'm pretty sure trumps it. Insomnia mentally and physically fucks with you as does Crohns but having both!!? Come on man! Let me catch a break. 
I've been struggling with getting any sort of sleep for so long it's just normal to me now. Last night I finally fell asleep at 7:30am! Yes, u read that correct AM! Tonight it's already almost 2am and I'm in for another long night it seems. Yes I know being on my phone definitely doesn't help and will make falling asleep harder but believe me I've tried almost everything. Everything u could possibly try, trust me I've googled everything and tried it. I've chugged Zzzzzqil, NyQuil, I've tried Unisom, every sort of sleepy tea imaginable, melatonin, lavender smelling shit, hypnosis videos and tapes, I could go on forever. 

Not sleeping makes u insane! I wouldn't wish it on my worst enemy. Yes I know I'm bitching a lot but I can't help it and that what my blog is for....for me to get out my feelings, vent and let people know that they aren't alone. 
There are things that help me fall asleep but require prescriptions and are all habit forming besides weed. I've never been a smoker of weed EVER! I hate the smell and the taste but I was desperate to try anything. 

I finally had had enough of not sleeping and I wanted to try a natural remedy rather than the prescription drugs the docs were throwing at me. So me and my sister went to Colorado stocked me up on different strains to try and came back home. Like I said, I've never been a smoker and have never liked it, after trying the stuff from Denver I still don't like it but it does help with my insomnia!

 It all started off with RLS(restless leg syndrome). If you haven't experienced this, you are one lucky son of a bitch because it's miserable! It feels like your legs constantly need to be moving and need to be stretched out. But no matter how much you move or stretch nothing is enough! I feel like I want to pull my legs off sometimes! It drives so so INSANE! I became mentally unstable one night and immediately went to the doctors the next morning after not falling asleep not even for one minute the night before. The doctor ended up prescribing Ropinerole and it's a life saving drug for me! It worked to stop my crazy legs but not to help me sleep which was a victory at the time. 
The strains of weed I bought in Denver were Indica strains and were the kinds that were more for sleep, relaxation and pain. I'm all for medical marijuana and believe that it should be legalized nationwide and regulated just as alcohol is. I do hate the high, and don't think I'll ever like it. But like I said I bought the Indica strains that are more for a "body high" and not a "head high". I've smoked a few times and tried edibles a few times since returning from Denver and have had some success with treating my insomnia. It makes me eat A LOT more than I usually would which is excellent considering I'm underweight as a lot of Crohns patients are! One time I smoked and ate 12 donuts in one sitting! πŸ˜‚πŸ˜‚πŸ˜‚πŸ©πŸ©πŸ©πŸ©πŸ©πŸ©πŸ©πŸ©πŸ©πŸ©πŸ©πŸ©
It helps with my pain and insomnia also! Within 10 minutes I'm sleepy enough to fall asleep and not fight it or go crazy trying to sleep. 

Other than success with weed I've had some success with Ambien but I wouldn't recommend it. It's a scary drug and is super addictive! I don't remember doing some things at night after taking ambien as a lot of other ppl have also reported after taking the drug. I have two scars from falling after taking ambien and not remembering how it happened along with waking up to food I cooked that I don't remember cooking. 

My pain medications if taken in higher doses almost always do the trick but it is HIGHLY discouraged to take them for sleep as they are for pain and very ADDICTIVE! Pain pills are amazing drugs but can also be a demon for me. I've struggled with taking them bc I've been on them so long that I've grown a tolerance and small addiction to them. Withdrawl symptoms are the worst thing EVER! That's why I'd rather stay away from them as much as I can. The most recent drug my doc has me trying is Ativan which is an anxiety med that can help some ppl relax and sleep too. I've had some success with this med but have only taken it a few times as this is also a very addictive drug! Why are all the drugs that help me fall asleep all bad for me and so addictive!? Such a bummer. So as much as I dislike the taste and smell of weed I'd highly recommend it if you're struggling with sleeping. Trust me. Crohns is bad enough, we don't need insomnia as well. 

Wishing you all a good night sleep! 


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Saturday, June 25, 2016

3rd Entyvio Infusion

Once again I'm slacking on this whole blogging thing, but what can I say.....I have an exhausting disease. Most people would think that typing up a post once every day or even once every week would be a piece of cake.....heck even I thought that before starting one, but I'm not a normal person. I have an autoimmune disease and as most people with these diseases come to know, that even the smallest of tasks become so exhausting both mentally and physically. But here I am, I found some strength to type up a post tonight, it's a rare occurrence that I'd like to see happen more often. 

So on to my Entyvio...about a month ago around May 17th I received my 3rd infusion of my new drug to treat my Crohns Disease called Entyvio. It's pretty much the last conventional med for me to try to control my Crohns with bc all else have failed miserably. I haven't hit the 6th month mark yet to where my doc says that is when the med seems to start working for the majority it does end up working for. I'm still hoping and praying that this med is the one that does the trick. The infusion went well and once again they gave me some iron in my infusion as well bc my hemoglobin is still so low. 
☝🏻️☝🏻☝🏻there's my routine infusion selfie
After all the countless meds I've tried from all the pills to Remicade to Humira nothing has given me any results...ZERO, but so far with Entyvio I've at least seen weight gain. In my 7 years of dealing with this horrible disease I've never gained a significant amount of weight other than when they had to put a PICC line in because I was at a dangerous weight. I'm 6'6" and at my lowest weight I was 140lbs. A PICC line was put in at that point and for a year I stayed steady between 155-160lbs. After removing the line I remained at this weight for a few years. Since starting Entyvio I've gained 20lbs and am now weighing between 175-180lbs, the HIGHEST since being diagnosed! (205lb was my heaviest weight) 
Other than gaining weight I've seen an increase in energy and my hemoglobin has gone up and stayed up(still low for a "healthy" person but up for me). Although my bathroom trips haven't decreased nor has my urgency, I'm encouraged that I've seen some improvement in other areas as I haven't had any improvement on any other meds. I remain hopeful that I continue to see results with Entyvio! 

Gotta include a pic of the girl that keeps a smile on my face....πŸ˜„

Keep your heads up!