My Time at Envita

When you have chronic lyme disease, it’s really really really hard to get better.

I went to Envita Medical Center and was there receiving treatment through my port for 4 months. Basically you sit in a lazy boy and they pump antibiotics and nutrients into you through your port. I highly recommend getting a port if you will be doing IV antibiotics.

This has been a really hard post to write.. my experience there was so difficult and made me feel like I was dying at some points.. but now I’m walking!

I’ve been home for over a month and now I’m walking and driving by myself when just a month ago I was in a wheelchair. I can’t help but think I can thank Envita for that.

I spent my whole time in treatment thinking that it wasn’t working, I felt so sick the WHOLE ENTIRE TIME.. but people kept telling me that after I got home and stopped the IV’s, things get better.

Physically things have gotten better; I’m walking, my nausea is gone, my brainfog isn’t as bad, my pain is less, and my shaking and tremor are gone. Yet emotionally and mentally, I am struggling.

My anxiety is through the roof since coming home, and my depression reached it’s peak. I can barely get out of bed most days i’m so sad. I miss everyone I met at Envita, and miss having that understanding every day. I had something to do every day and people to talk to.. now i’m back at home living with my parents, with no friends in real life.

nursesThese are the nurses being silly, I love them all so much. Part of me wishes I could stay there forever but at the same time it was a horrible journey.

I’m having a hard time finding stuff to do that distracts me.. i’ve tried breathing, crafting, drawing, blogging, swimming, walking, nothing distracts me. Nothing kills the horrible anxiety in my body.

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Long overdue Update

Treatment has been so horrible I haven’t even been able to think about writing my blog.. I’ve been throwing up every week and the bag of vitamin C is not going to get any better. But I have to do a lot of catching up on here my current treatment is infusion through my ports from bags of meds hanging on a pole. I can’t find anything that helps my nausea for the vitamin c and the keylation bag.

It turns out that I have a lot of lead in my system so I have to do keylation through infusion and it has made me throw up A LOT. Throwing up isn’t even a common side effect for that medicine. It’s ridiculous. Every day I feel like I can’t do it anymore.

Every one that works there is AMAZING and all the patients are too.. well most of them are (haha) But my anxiety and depression has been through the roof so it’s hard for me to enjoy any of that because I can’t control my anxiety.

So far medical marijuana is the only thing that helps me with my anxiety and nausea but I can’t smoke during treatment and i’m usually to nauseated to eat the sweet edibles. The doctor told me to keep the medical marijuana steady but it’s so hard when your so nauseous.

My parents have been great too but I just don’t feel like we can ever get things together during the week. Especially me.. I haven’t been able to get up early enough to get to the clinic in time to do treatment with my friends. So I end up doing most of my treatment alone when having them there is such a good distraction.

I’ve also started seeing the therapist at Envita.. she’s very nice and it seems to be going okay. I just have so much inside of me that I just end of babbling the whole time never really finishing subjects just jumping around from subject to subject..

I keep having people tell me that I need to be more positive. No one really says those exact words anymore because of how made I get.. but they say it in different words and it’s really starting to get on my nerves. I’m not sure why but lately I don’t feel strong or like I can do anything right and being positive just isn’t on the docket right now.

Tonight I’m having a really hard time sleeping, it’s 2:30 in the morning and I don’t feel tired at all. Honestly I feel like playing sims. I think I will after this.

I also need someone else to talk to besides my parents so please feel to comment, I’ll try to start back to updating and critiquing very soon 🙂
These next 2 weeks are crunch time. Apparently if I do everything I’m supposed to for these next two weeks I could be breaking the wall that’s keeping me from getting well.
So I will try to write as much as I can.

To sum it all up.. i’m not doing that great but I guess I could be doing worse..

The ins and outs of Coffee Enemas

Your first thought is … WHAT THE F***?????!!!!!! That’s that stuff I drink. uh BYE!

But here are 10 reasons why you should at least try a few!

I’m going to give a few tips myself.

If you read the previous post – Scientific and TMI update – you’ll see that the enemas have not worked for me after doing 6 but I’m making this post because I believe they help others. I’ve met way too many people who say they like doing them because it helps them, plus it’s the only way to detox properly with the treatment we are getting.

Tips and My Critique

Going somewhere to get it done for you
– If your at Envita or in the Phoenix area, Angie at Detox for Life is the best person I know of. (She also does colonics if that helps you more)
– Otherwise, remember the less relaxed you are the more your going to cramp so if you don’t feel comfortable speak up or leave the appointment.

Doing it from home
– Don’t have to worry about weirdness from someone else being in the room.
– Use water first and start with two cups to work up to four.
– Start your show or movie before you lay down, just distract yourself the whole time.
– You have control over the flow.
– The higher it is the faster it’ll flow (I put mine on the toilet seat)
– Hold for as long as possible up to 14 mins

My Chronic Critique? They don’t work for me, even when I went to see Angie and got colonics and the enema, I still had a migraine and was sick that night.

BUT EVERYONE IS DIFFERENT!!!!!! I know alot of people who get great help from them.

Any Questions?

A Scientific and slightly TMI Update

So in the past week I’ve learned that I do in fact on top of having Borellia, Bartonella, Babesia, have Epstein Barr Virus,  and Herpes Virus 6. I say it that way because EBV has been showing up on my blood reports for years and my other docotors kept telling me that I didn’t have it. It’s another stupid thing us Lymies and Spoonies get to go through.

Thank goodness for Envita. Interestingly enough, Herpes Virus 6 is commonly associated with Chronic Fatigue Syndrome among others but it shows that that, plus other CFS symptoms, can indicate that I in fact that Chronic Fatigue Syndrome also.

So this isn’t such a positive post more as a educational catch up;

According to my X-Rays my lumbar has too much curve, the thoracic has ‘the Lyme Twist’, and the cervical doesn’t have enough curve. So nothing too crazy, turns out my old chiropractor  actually helped!
I wholeheartedly support chiropractors and advise everyone at least try it. Especially us Lymes with our “Lyme Twist”.
I put quotations around the words ‘the Lyme Twist’ because i’m not sure it’s a real doctor term..
All I know is that the Chiropractor at Envita says it’s a thing and that most people with Lyme have it. I assume its some curve in that area of the spine which makes since because my spine is on fire, ALL THE TIME!!

Also I started the dreaded coffee Enemas. If you don’t know what i’m talking about here are 10 reasons why you should do a coffee enema. If it sounds weird to you, trust me I was WAY more uncomfortable with it. But people SWEAR by them. Not me. I completed my 6th one (First one was done with Angie who also did colonics and I cramped like crazy! And felt horrible after! But she’s still really nice and works for some people.) today and I feel terrible.
I’m starting to wonder if these are working on me and i’m having to take an Imitrex for my migraine after EVERY SINGLE ONE. This can’t be doing good for me.. I just feel malaise, fog, migraine, and cramps.

I’m an anomaly, that’s the life of a Spoonie. Everything EVERYONE says is different when it comes to chronic illness. At least I have some more viruses to tack on to my already wonderful life!

 

Accessible Christmas in Scottsdale Arizona

Butterfly Wonderland has a lovely Christmas event daily until 4:30 which includes live angels, and live Christmas music. Plus the indoor Butterfly garden is Amazing! And accessible just be careful not to run over any butterflies 🙂
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Must See Christmas Lights in Scottsdale Arizona
– 8415 E Valley Vista Dr – This one is called Winter Wonderland and it’s a walk through! (the walk through is NOT accessible) There was hot chocolate, cookies, and s’more supplies for sale. And besides the HUGE light display they had a snow machine! (my favorite) 
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– 8312 E MacKenzie Dr – They had a lovely display but it wasn’t my favorite
– 8514 E Avalon Dr – They had an amazing musical display and a huge fire for us to sit next to while we watched. Plus they served hot chocolate and cookies!
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Zoo Lights
During Christmas, at night the Zoo turns into a magical wonderland! There were Animals, a beautiful garden, 3D Light sculptures, and a musical show!
Its a must see! My mom, dad and I had a great night and it’s all very accessible.
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My Spoonie Holiday

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Since i’m living in Arizona for a few months for treatment, my parents are doing the ole switcheroo game so my mom left before Christmas. It’s really sad not being with family for Christmas but at least I had my dad. We had a quiet wonderful day of presents and Boston Market 🙂
The worst part is that my moms side of the family has a Christmas gathering every year and this is the second year in a row I haven’t been able to go. And I’ve hardly seen my dads side of the family since I got really sick. Winter Wonderland in Scottsdale is where this picture was taken, this family does this every year so check it out!
After most of my friends turned out to not really enjoy being friends with a sick girl, family is mainly what I have left. They mean everything to me and they’ve gone out of their way sending me cards and gifts. That’s really what Christmas is about, the love of family.

For New Years, I knitted a scarf! Haha exciting I know but we also watched New Years with Ryan Seacrest and sang along with Jimmy Buffet and others haha we had some fun.
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New Years day was my favorite, I was really anxious all day so after dark, we found some streets that went up into the mountains and looked out over Phoenix and all the lights of our area. It was breathtaking! It was just like the movies sans the romance haha. If you are in the valley, do it! There wasn’t anywhere to park really just a bunch of really expensive and BEAUTIFUL houses but we were able to pull over and just look for awhile.

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I hope everyone had a wonderful holiday!

 

Anxiety Problems

The pain from my port, my dad having a cleaning day, and all this down time is giving me intense anxiety. Well I guess it’s the Lyme, Bartonella, and Babesia that’s giving me the anxiety but still. I’m not good with down time.

All this illness is, is down time. I’m so sick of it! I’m sick of having nothing to do and being too sick to do things that are actually fun.

I can’t even put into words what I feel right now but it just feels like something isn’t right. Maybe I should be doing things? But I can’t just keep doing things, I’m too sick. It’s a horrible horrible circle.

But I can hardly sit still. I can’t even sit and just watch TV (That’s why i’m writing this blog) I have to be doing something. But I’m exhausted and my wrists and hands are tired from typing.

I’m starting to sound crazy and man do I feel crazy. These diseases SUCK.
hate feeling like a crazy person; Anxiety, Nausea, and the fact that I can’t walk are the worst parts for me.

What I do
– Take Valium
– Hold something like a stuffed animal or a real animal
– Mess with my key chain necklaces (I collect key chains that you can mess with and fiddle with)
– Color (In coloring books)
– Take a epsom salt bath
– Use calming essential oils
– Scream when none of those things work….. That’s where i’m at right now.

If anybody has any tips please let me know!

Port Pains

First of all, getting something inserted into you with only twilight sedation is bad enough. I hated it! I only had a little hole to look out of and I hated the feeling of pressure and the stitching. Ugh it makes me shudder just to think about it. But I got through it.

Secondly I’m still having pain! It’s been 10 days and I’m still having to ice it basically every minute i’m awake. It’s getting quite annoying. But right now i’m not accessed so it’s slightly less annoying than having that painful pony tail hanging off my body. And I learned recently that I have a childs port which means it’s smaller and therefore harder to poke.
Hopefully Destanie will always be there to save the day with her amazing poking skills – If you have a problem getting accessed at Envita, ask for Destanie. (So far she’s the only one who’s accessed me and she saved me one day when I had been poked with no success.)

Maybe it’s better to get an adult port no matter what? I don’t know!
It hurts the worst where the tube goes over my collar bone but the doctor says that’s normal unless it continues into next week..

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Very Bad Day

Today was horrible. The chiropractor was wrong, I’m feeling major pain from my adjustment a couple days ago. (I got adjusted so that my frequent urination would slow, and it has!) I’ll probably forget to tell him though.

Vitamin C is kicking my ass. First I start getting nauseated from the Doxy and take some nausea meds etc, and i’ve been able to tolerate it. But then comes Vitamin C and man, that bag kicks my ass. I threw up twice and couldn’t even keep saltines and water down. They had to give me the bag of hydration that of course I can’t remember right now, it’s something rings. But basically it hydrates you and helps with the vit c nausea, and it made me feel much better so that I could leave.

Then I had my Ketamine treatment which didn’t go as well this time. Even though I used the bathroom twice before it started I still spent most of the time trying to pee and this time my hallucinations were Star Wars related which I gotta say was the cool part. Plus the lights came on by them selves for like 30 mins before I could get someone to hear me and come turn them off. (I have high sensitivity to light) but I still got about 4 hours or so of relief from pain! yay!

Altogether it was a pretty bad day, but hey it’s almost Christmas 🙂 and my Aunt Martha sent me some yummy sugar free, dairy free, and gluten free sweets! Hmm.. maybe I am starting to get a little positive. I’m at least trying to notice positive things that happen which I think is a big improvement to my normal attitude.

I also had a really enjoyable time talking with some new friends. Even while I was throwing up, they just kept saying nice things to me and helped me get through my bad day. Thank you to Christine and her daughter Lauren and Jill. Meet them if you go to the clinic 🙂

Today I am Thankful For
1. My Dad
2. My Aunt Martha
3. My New Envita friends

Temporary Medical Marijuana Card

medical-marijuana

This post is mainly for future Envita Medical Center patients who want to try Medical Marijuana (And you should AT LEAST try it!)

I don’t know about other centers, or states, but in Arizona, and at Envita, patients can get a Medical Marijuana card to use during their treatment and stay in Arizona. I will be here for at least 4 months so I decided to get one, so here is my perspective.

What you need to do
1. Get Arizona I.D.
– Bring 2 forms of I.D. – I chose birth certificate and university I.D. (Passport is most common but I don’t have one)
– If you use your drivers licence they will probably take it from you
– You have to go to the DMV but it’s worth it I think
2. Get referral from Envita  – You also get a discount for bringing recent medical tests and diagnoses etc.
3. Get consultation from a Medical Marijuana Drs office
– Most go to the one in Tempe but I personally went to the Scottsdale office. There is also one in Phoenix.
4. Wait 7-10 business days until your card comes.
5. Go to any dispensary you want and use it for your relief.

Honestly I think it’s something everyone should try at least once. You’ll be surprised at the benefits.