Hey Peoples.

I am in a very emotional head space right now. Had a very bad day, and people said some things that hurt me, but I know they didn’t mean to. So this will not be a super crazy and detailed in this post like I usually tend to do. I’ll keep it simple.
I digress.

So, in 6 days, I’m starting IV treatment for my lyme and co-infections.
I’m going to have to be  driving out of my city to get these treatments done, which is about an hour and a half each way.
I’ll be starting pulses 2x a week. And moving to a higher dose once I am taught how to do my own IV treatments so I can do them
at home.

Also. I officially lost my position at my group home. Yay.
It’s times like these when I wish I would have cancer instead of lyme disease.

I’ve not been doing well the last few weeks. I’ve had major symptoms which makes me more stressed. The stress  in turn makes me more sick. It’s a vicious cycle. Also now that I’m starting IV I need to make sure that I have the funds to do so which is stressing me out.
I’m trying not to stress too much and let God provide…it’s just very hard to do.

Pray for me:
-Please pray for my emotional  well being.
I’m weary and tired and don’t want to fight any more.
-Please pray for finances for my medications and doctor visits
-Please pray for my disability papers to go smoothly as I’m applying for PWD. If I get approved this means I can
hopefully get more money to cover my expenses.  (Half of my cheque that I just got is gone from buying meds and seeing my doctor yesterday which is supposed to last me through the next month.)
-That God willing would open doors to being able to work in some capacity or earn some money.
-Healing
-Another place to live

bad day

Advertisements

Cure the IDSA

20140522-161522.jpg

May is lyme awareness month, and as it’s fitting I figured I would talk about the issues that are continuing to leave so many chronic Lyme disease sufferers sick and going without proper treatment. There is a misconception in the medical community that Lyme disease is A. Not chronic and B. Not fatal. Luckily there is a lot of scientific evidence out there to overthrow those two claims. The problem is: the IDSA is not acknowledging this science. For years and years the IDSA have stuck to their guns about Lyme disease even though their guidelines and definitions of ‘Lyme’ are outdated. The science has been growing with figuring out why Lyme can be chronic and hard to treat. Yet the IDSA still claims that Lyme disease is not chronic and easy to treat. This leaves those with chronic Lyme disease in a tricky place. How can one get help for their disease, if their disease is neglected and or dismissed by big health officials like the IDSA/CDC? Where does one turn? Even some doctors who want to help chronic Lyme patients are stuck. Where do they go for support? How do they diagnose and treat patients when there these overseeing bodies (CDC/IDSA) putting barriers in the way of a doctors ability to diagnose and treat Lyme- especially if it’s chronic Lyme. Must their hands continue to be tied if they want to do the right thing? Remember the hypocratic oath? !

In addition, I personally have not recovered from the ‘IDSA standard’ that claims that 2 weeks of antibiotics can cure a Lyme disease infection. I have been on treatment for almost a year and am still not better (this does not include co-infections either smh).
The IDSA and the CDC are the main problems that are hindering individuals from getting better from Lyme disease because until they also change their ‘standards for treatment’. There are many forms of treatment protocols. One is long term antibiotics, either orally or through IV. Long term antibiotics are hard to get, because as mentioned earlier- chronic Lyme is still up for debate. You can’t treat something chronically if it doesn’t exist chronically. This is why chronic Lyme disease needs to be validated, that way we can hopefully get a cute. After all, that’s what the hypocratic oath is for right? Do no harm to the patients? Then why is the IDSA doing harm and denying hundreds of thousands of people the treatment they deserve to get better. People should not have to die from Lyme disease, and I blame the IDSA and CDC- because they are responsible. They also set the standards to what level of treatment doctors can prescribe to their patients. They hold mercy in their hands, yet refuse to show it to any of us.

To understand this in more detail especially concerning Lyme disease please check out the following document:

http://media.wix.com/ugd/12c4ab_6f9d666c08b440b0a42515cda30fea05.pdf

Love yall.
Mulah.

Lyme Awareness Event

Please check out this upcoming event if you are able to! 
You just might end up saving someone’s life. 
Knowledge is prevention!

It’s also on my b-day, soo *cough* that would be an awesome gift, y’know, supporting lyme awareness and education! 😉
Image

Holy Hives Batman!! Some remedies that have helped me!

These past few weeks I’ve had a bunch of crazy symptoms flare up in my big ol’ face.
I think part of it has to do with the fact that I’ve been so stressed! We all know that stress is not good because it increases the cortisol levels within the body. So when your cortisol is high, you’re immune system starts to malfunction, heart rate goes up and all sorts of other treats decide to happen. So please, if you read this, find a moment in the day to relax somehow. Stretch, do a little exercise (if you can), read, pray, go to the park and be in nature..whatever. A moment to relax and unwind is better than none. 🙂

So one of my main complaints recently has been something called dermatographism ucticaria, also known as “skin writing”. I like to call it hives on steroids because in my opinion that’s what it is! It’s a nasty lil sucker! And holy crap is it ever irritating (pun intended).
A lot of times the causes of different types of hives can be unknown, sometimes there can be an allergy trigger, or a viral or baterial infection in the body or an underlying auto immune condition and the skin reacts to this. Because I have lyme disease I’ve done some research and have found that while herxing, a lot of times the ‘bugs’ like to exit through the skin. With herxing all the toxins and chemicals get released throughout the body, so it’s no wonder why the skin would immediately become irritated. I’ve had this issue of dermatographism for 10+ years, but for the most part it comes and goes in waves. Usually it lasts weeks, or months for me and disappears. Ever since I’ve started treatment, I’ve had more skin issues. More rashes, more hives. But these past few weeks my ‘dermatographism uticaria‘ has come back full blast. So, what I’m trying to do is help my immune system get up and running by taking some vitamins in the hopes that my body can relax a bit and the swelling will go down.

Image
Remedies:

1. Cut out coffee. This is hard for me, because I love coffee. But lets be honest, coffee isn’t the greatest for us. It still is a drug and the high amounts of caffeine have been shown to have negative effects on blood pressure and the brain, so if you’re blood pressure is already high or if you’re having arythmias cut it out of your diet, even if it’s for a little while because caffeine can exaggerate those problems.
Instead drink lots of water and tea to help eliminate toxins from the body. I reccomend Ginsing tea. I buy mine from Vitamin World.
The more toxins you can remove the greater the chance of your hives going down- if your cause of hives is due to toxicity, or bacterial infections.
**Note: Caffeine also dehydrates you, so drink as much water as you possibly can!

2. Antihistamines!
Oh my lawwwd, I love me some anti-histamines. Some anti-histamines contain different ingredients, so find out which one works for you. The one I’m currently taking contains diphenhydramine hydrochloride USP. It has been so helpful.

3. Gold Bond cream. This was a suggestion I tried from some friends on facebook. I wasn’t sure if it would help my hives,
but to my amazement it did! I also tried the powder, which I didn’t find as effective, but the lotion stopped the irritation almost immediately. It WERKED.

4. Aloe Vera Gel has helped me in the past. I keep my bottle in the fridge and put it on my hives while it’s cold! EEE!
Aloe Vera is very soothing on the skin, and is great for irritation.

5. Find the cause.
If you can find what’s causing your irritation, then you can find ways to prevent outbreaks.
Ask your doctor for allergy tests. If you’re hives aren’t going away and you also notice jaundice, flank pain, with an onset of other symptoms it may be a good idea to make sure your liver is still in tip top shape.
If you think this may be the culprit you can buy liver detox teas, drink more green smoothies and change your diet to help your liver be able to eliminate toxins and do it’s job! I also like to take detox baths with a mixture of hydrogen peroxide, ginger, and epsom salts.
You can also do the same with essential oils and epsom salts, some even use apple cider vinegar.

I hope this has been helpful for some of you!
Do you guys have any remedies that helped with your hives?
Share your tips with a comment below!

Much love,
xoxo.

Treating her like the only girl in the world…

Image

My favourite flowers!

This is just something I have been thinking about lately.

Everyone gives love and receives love in different ways. (Cue 5 love languages!)
For women, we want to be  treasured.  Ever since we females were youngins- we were daddy’s little princesses.
Essentially, we felt “special” because we were given the role of princess.

Now, times have changed, we’re older and while princess isn’t a common relationship nickname, we still want to feel treasured by those who hold our affection. (Sidenote: That’s also why I think that a God that pursues his bride is so awesome).

I do have one thing to add before you take a gander at the list I found on Deviant Art.
If your partner/wifey also has a chronic illness, remember to let them know that you want to be with them. Chances are, they feel like burdens, not so attractive, and  like a waste of resources. I guess in a sense I got lucky because my ex was a nurse, so he was good at not freaking out when I would convulse or spasm. Instead he would hold my hand while we waited for it to end.

I’m going to write another blog on dating and chronic illness soon (if I can manage).

But anyways, as I was exploring the net I found this post which was pretty right on, and ironically it was on deviant art, in it there are some ideas you can do to make your lady feel treasured. I agree with most of this list.
(One thing that isn’t on the list that I would add is: Pray for her. Pray together!)

So without further adu, here it is:

1. Tell her she is beautiful (NOT hot, fine, or sexy.)
2. Hold her hand at any moment, even if it’s just for a second.  Make her feel protected.
3. Leave her voice messages to wake up to.
4. Always tell her you love her every second of the day.
5. When she is upset, hold her tight and tell her how much she means to you.
6. Recognize the small things . . . they usually mean the most.
7. Sing to her no matter how horrible your voice is.
8. Pick her over all the other girls you hang out with.
9. Write her notes.  (She loves them.)
10. Introduce her to family and friends . . . as your girlfriend.
11. Play with her hair.
12. Pick her up, tickle her, and play-wrestle with her.
13. Sit in the park and just talk to her.
14. Throw pebbles at her window in the middle of the night . . . just because you missed her.
15. Let her fall asleep in your arms.
16. Carve your names into a tree.
17. Never refuse to kiss her in public.
18. Give her piggyback rides.
19. Bring her flowers
20. Treat her the same around your friends as you do when you’re alone.
21. Look her in the eyes and smile.
22. Let her take as many pictures of you as she wants.
23. Slow dance with her, even if there isn’t any music playing.
24. Kiss her in the rain.
25. Love her. If you don’t, you’re not going to treat her like a queen. Assuming that love is in place, it is up to you to treat her well.
26. Give her a nickname that she loves and makes her feel special.
27. Treat her special! Open doors for her, give her your coat when she’s cold, don’t let her walk on the curb, carry her purse, etc.
28. Do something for her without her asking you to do it. Surprise her by getting a card for her for no reason. Buy her chocolate on your way back home. Drop by or give a random call telling her that you miss and love her.  Understand that little things mean a lot!  A love note, rose, sweet text message or things like this just to let her know you are thinking of her and care for her.
29. Make her feel like the best thing in your life. She probably is!
30. It’s okay to have friends (male or female); however, if your girlfriend has a problem with the female friends you should be willing to compromise.
31. Be careful about complimenting other girls, especially if she doesn’t know them. She may get jealous and angry with you.
32. Don’t ever hug friends for too long, especially if you know she’s not too fond of the friend.  Also, don’t treat your female friends like you’d treat her.  She’s a special part of your life, so save the cuddly stuff exclusively for her.  Don’t lean your head against one of your female friend’s heads or nap with any of your female friends.  This will only make her jealous and distrusting.
33. When people diss her, stand up for her.
34. Be her best friend. Girls can be insanely loyal; she will be yours, no question.
35. Be yourself. Don’t put on a fake show of yourself.
36. When you are spending time with her, make sure she has your attention. Make sure you listen to her and talk to her. Just sitting beside her doesn’t count as time together.
37. DON’T CHEAT ON HER. It may seem foolproof, but girls tell each other everything about everything. Trust me, she WILL find out and you WILL be dead (or over.)
38. Beware of every single male relative and all guy friends. Any of them would kick your ass at the drop of a hat, and a lot of them wouldn’t even wait for the damn hat.
39. Every girl should eventually get THREE THINGS from her boyfriend- a stuffed animal, one of his sweatshirts, and a really pretty ring. Even if it’s not a serious relationship.
40. If a guy is bothering her, it is your right to kick the shit out of him.
41. If you’re talking to a female friend of yours, pull your girlfriend closer.
42. Memorize her god damn birthday. You forget her birthday and you’re basically screwed for life.  Make her feel like her birthday is the most special day in the world
43. DON’T give her something stupid for her birthday or Christmas or Valentine’s Day. It doesn’t have to be expensive, but it has to be meaningful.  Jewelry is always nice.
44. After you’ve been dating for a while, realize that they really have started to trust you. When you have a girlfriend who truly trusts you, you have a lot more responsibility, privilege and control than you would think. Be careful with it, most guys would kill for that kind of power, and it can be lost in a nanosecond.
45. Put your arms around her waist and whisper in her ears.
46. Look deep into her eyes, put both hands on her cheeks, and tell her you love her more than anything.
47. Be the best boyfriend in the world.
48. Buy or make her something special once a month to show your love.
49. When something makes her mad stay with her until she is smiling again.  When she is crying wipe her tears away with your hand and hold her until she stops to let her know that you’ll always be there for her
50. Look at her like she is the only woman in the world that you see.
51. Always remember the way and the date that you met.
52. Have your portrait taken together.  It will be a lifetime memory of your happy relationship and it may come in handy some day in the future– when you need a photo for the newspaper engagement announcement!
53. Never talk about your ex-girlfriend in front of them.
54. Be her superman: no matter what she says or how she reacts to things, she’s always going to need you.  Never let her down by failing to return a call or text and making her worry.
55. If you make a promise to her about something important, keep it.  Disappointment is one of the worst things that can happen to her, and when it comes from you it significantly hurts her.

My Feet are Slipping…

Psalm 94:18-19

When I thought, “My foot slips,”
your steadfast love, O Lord, held me up.
When the cares of my heart are many,
your consolations cheer my soul.

I just want to Say a big thanks to those who have been keeping me in their thoughts, prayers, and even pocketbooks.
I just want to recap on how treatment is going. It’s almost been 9 months straight that I’ve been on treatment now for late stage neurological lyme disease, babesia, bartonella and anaplasma phagocytophila. I can’t even believe it. It all seems like a bluur, a crazy ride filled with moments of highs and lows, victories and setbacks. Smiles, and nights ending with many tear-stained (thanks mascara) pillowcases. I remember in the beginning, everything was so scary. The nights I would wake up gasping for air, have horrid heart palpitations, vertigo, nausea, inability to stand for long periods of time, have to use my wheelchair, have horrid pain, spasms, blackouts, and see…all those things used to terrify me. I remember going to bed at night, expecting not to wake up the next morning. But, I’m still here. But now, I don’t scream when I’m in pain any more, or cry my head off sobbing uncontrollably if I can’t breathe-instead, now I just wait patiently, and silently for it to end. Sometimes tears still fall in the silence as I still try to hide my pain from people. But I only do it because I don’t want to complain about something people don’t understand or make them stressed.
In a way, I’ve gotten so accustomed to certain symptoms, that it’s almost like I’ve made a new friend, rather than an enemy, because I wont ever know which symptoms will be cured and which ones might stick around (because of damage also known as post lyme syndrome).
On a positive note: Slowly but surely I am getting better. I don’t know how much longer it will take to get back to normal but I am finally optimistic about being ‘cured’ of this horrid disease. At first when I started treatment I thought that being ‘cured’ was something that seemed impossible, but now as little by little I get better, I finally feel like I may get my old self back.

Now the negative news: My disability has been cut off through my insurance company, so now I have no income to pay for my meds/vitamins and other bills. I’m still not well enough to go back to my job, so I would appreciate every ounce of prayer that you can muster- to pray that God would provide. On top of being ill, stress can aggrivate my symptoms, so I am trying my hardest to trust in God throughout this thing and not freak out. As of this point, I feel like my feet are slipping, yet somehow I’m still standing.
So prayer that God would provide for my medical treatments, government disability, and for God to intervene with my case workers from my insurance company that stopped my disability (they haven’t even written me a formal letter saying that it’s been cancelled, they just stopped it). So bills are piling up, and funds are zip.

I’ve also started new treatment for “fibromyalgia” and had to stop it. Again. My air hunger and heart issues have come back, and I’m attributing it to the new med which can cause those side effects. I’ve also been feeling ‘ill’ in general since being on this med and I think it’s because it supresses the immune system, which in turn lets other things reak havoc in the body.
I also have a bunch of other scary health things acting up, so long story short:
I still need lots of prayer. I have a specialist appointment at the end of April, so hopefully I don’t have any more negative news.
But, God isn’t done with me yet. Apparently there’s still work to be done. And Like Paul said, to live is Christ and to die is gain.
If I live, it’s only because of Christ and his miraculous works, and if I die…that would be great because I get to be with Christ.

So let my life be a reminder to you that God isn’t done with you yet either.
I’ve made so many mistakes but he still pursues me and loves me. In the same way, he loves you.

xoxo.
Ang

Happy New Years!

Well, I’ve been gone for awhile. My apologies.
I hope you have all had a good holidays, actually, on that note:
HAPPY NEW YEAR!

I’ve been really sick the past few months, and had to switch around my meds to try and combat all the horrible new and increasing symptoms I’ve been facing. So over the holidays, Christmas day to be exact I felt like absolute death. I was a living zombie. Rawr.
I was vomiting non-stop. Into the night and the early morning I could not keep ANYTHING down. I had a fever, insane weakness and heaviness, my face was jaundiced, my head felt like it was exploding and I almost passed out. Anyways, I pieced things together and I realized that my LIVER has been the problem. The jaundice, vomiting up bile, not being able to tolerate my meds  at all -eugh. (Apparently this is very common though for us lyme patients on long term abx!)
So because of this, I’ve been off all of my meds. It’s only been a week, but I certainly don’t feel like I’m dying anymore. PHEW. You all can put your guns away, because I no longer want yall to blow my head off. (That’s how bad the pain was!)
And then prior to that, maybe a week earlier, I had stroke like symptoms where I was unable to speak and only make sounds, was suddenly weak, had a horrible headache and even bladder issues (that was new! 😦 *sigh*)
But right now, I’m alive. My head is burning and my TMJ area aches on my jaw, I feel dizzy and I have a huge headache. I’m not on my meds. So I don’t know if I’m beginning to relapse or if I have been feeling ill because of detoxing? (And having a toxin overload in my blood?)

But possible yucky detox side effects aside, I’m starting off the new year, 2014 with liver friendly foods and vitamins.
I’m going to be trying to eat tons of green smoothies. I just made one with kale, spinach, bananas and kefir! It was baaangin! Just sayin’.
I am also taking milk thistle, alpha lipoic acid, magnesium, B vitamins, and multivitamins to aid in helping my liver get it’s mojo back.

I may have to eventually do “IV” antibiotics because that way it bypasses the liver and gut and goes directly into the bloodstream. It would be more expensive (*gag*) but I’ll have to do it, if that’s what I need to do.
So I may be doing some more fundraising in the near future to cover the picc lines, meds, supplements etc.
🙂

Anyways though, no matter what you’re going through remember that God IS with you.
Love you all,
XOXO.