Wednesday, March 26, 2014

6 Months: Where I'm At

Sunday is my last day of month 6 for my treatment and Monday I see Dr.N and start month 7 protocol. 

So how am I doing? Where am I at? How can you pray? 

Well, I never saw that "turn for the better" Dr.N was hoping I'd see. Actually, this past month has been really hard. Last month, month 5, was okay. I mean it was like the couple months before it. The "normal" pain and neurological issues. But this month was down right miserable. I even broke down and called my Dr to ask if I should go to the ER. My heart was hurting, like this piercing/tight/unable to breathe pain. And my chest was tight and I could barely breathe without crying. I was kinda freaking out. Dr. N said I was having a babesia flair up. This was due to the bartonella dying off and the babesia was "taking it's place" and becoming the top infection in my body. He said we were gonna have to attack it harder when I see him next. Whoopie! I guess we'll find out in a couple days what that all entails. 

He was really reassuring, which was super encouraging. He said the ER wouldn't know what to do with a babesia flair up. But he also told me he understood how extremely painful and scary heart pain can be and he hates when his patients call about it, cause he can't do anything on the spot.  He also said that when he saw me again we'll get it figured out and keep attacking the disease head on. The fight continues. 

I've been praying for encouragement lately because it's been so hard. I didn't know what that would look like, and I didn't have an expectation- just needed something. And God delivered. Over the past week I've gotten letters, texts, messages and spoons. Yes, spoons! 

I was given actual spoons from friends. How sweet and thoughtful is that?! They each have such a special meaning to me. I cried when I got each one of them. I have the spoons where I can see them all the time to remind myself that I'm loved. And that I can do this. 

It's hard to help a Lymie. That's why these spoons mean so much to me. It's not a generic gift, but something really personal and meaningful to where I'm at. I mean making a Lymie a meal is hard cause our diets are super strict. And hanging out with us is not easy. Some of us can't drive. We may set a date and have to break it cause it could be a bad health day. And if we say yes to one thing we probably have to say no to the next.

This pass weekend I was able to go to church and was bombarded by people telling me they are praying for me and being encouraging. People that are going through some really tough things went out of their way to pray for me and see how I'm doing. 

This week has been good for my heart. I love words of encouragement, and my spoons, and people laying hands on me to pray. 

It's also hard to receive it- and humbling. I want to be helping people I see struggling, but I have absolutely no energy to do so. I want to go find meaningful spoons for people and make meals, but no energy. I know it's my season to rest and fight for my health though. Because of that I started writing down all the ways people have reached out to me and ways I can help others. So when I'm able I can pass it on. 

Alright, I'm done rambling. Thank you, from the bottom of my heart, for praying for me and encouraging me. It's getting me through. Here's to month 7 and that "turn for the better". 

Energy Expelled: Three hours to write. Stiffness in hands and fingers. Massive headache. And the usual sweety hands. I wrote this at 3am. Haven't slept in four days. Sorry for the poor grammar. 

~ "Without hope I wouldn't be able to breathe..."

Monday, March 10, 2014

27 Things Learned.

Okay. I have learned a lot more than 27 things through this treatment time. However, I had to find a way to finish this list and 27 is a nice number. 

So here are some serious, random, not so serious, weird things I've learned since I started treatment back in September. 

1. Avoid putting lotion on your face while you are twitching. Your lotiony finger may end up in your nose or between lips and gums. 
2. There is always something beautiful to be found in the valley. 
3. Spoons do not grow on trees. Use them wisely and prepare to possibly pay later. 
4. Baking soda is the most brilliant thing to put in a detox bath. Makes me less shaky when I come out of the tub and reduces inflammation. 
5. Applesauce, all natural jello, and turkey bacon are an acceptable breakfast, lunch or even dinner. 
6. Don't compare your marriage to someone else's. Just cause you are chronically ill doesn't mean you have to have a sucky marriage. 
7. Focus on the people who care about you. Don't focus on the people who don't.
8. If someone didn't care about you before you were diagnosed with a disease don't expect them to suddenly care after you are diagnosed. 
9. My Dr wasn't kidding when he said I was shaking things up in my body. And he wasn't kidding when he said the treatment is worse. 
10. Some people really do have good intentions, they are just busy with their  own crap too.
11. People can't come along side you if they are dealing with their own tragedy and hardship. Doesn't mean they hate you, just means their life, at the time, sucks too. 
12. Intently look for good. 
13. Don't compare your disease to someone else's. Even if they have a lot of the same symptoms, it's all different. 
14. My body is not the enemy, Lyme is the enemy. 
15. It's "Lyme Disease", not "Lymes Disease".  
16. Taking out organs is not always the problem solver. 
17. Taking a bath then taking a shower is stupid. Just lay back down and wash your hair in the tub. Ain't nobody got spoons for that. 
18. Watching Netflix all day does not make you lazy. It means you're resting and taking good care of your sick body. 
19. Talk to yourself. Tell yourself you have made it thus far, this is not your forever, and one day the world will be yours again. 
20. Make a list of what you're going to do when you are in remission. Nothing is too big or small to be on this list. 
21. Remember the things people said, didn't say, did and didn't do. Good or bad. So you can use that when you're healthy to help others. Don't let the cycle continue. 
22. Appreciate the people that are walking this battle out with you. No matter how few there may be. Focus on those who are fighting with you, not those who "should" be. 
23. Nobody likes being around a victim. You are victorious and more than an overcomer. 
24. Be real. Be honest. Chronically ill folks are great at putting masks on, and faking it. Doing so only hurts them and benefits no one. 
25. Set your boundaries and hold to them. Don't be around large groups of people if you get over stimulated. Don't go to an action movie if loud noises hurt your ears. Don't be around insensitive people if it's too much for you. Don't go to a restaurant if they don't have food you can eat. Just because you made plans doesn't mean you have to keep them. If your body has had enough that's okay.  Dressing up is overrated. Sweat pants are perfectly acceptable. Your health goes first. 
26. Giving up is not an option. 
27. Just be thankful you can ______ (fill in the blank with whatever you are complaining about). 

Energy Expelled: Writting this post was difficult and exhausting, but it just added to how I've been. These past two weeks have been a nightmare. I feel like I've just been getting worse. I'm really looking forward to seeing Dr.N in a few weeks. I need a change. Can't keep feeling this way. I really covet everyone's prayers. 

~ Out of suffering have emerged the strongest souls. 

Monday, March 3, 2014

Everybody Needs Some

I started month 6 for my Lyme Disease treatment about 5 days ago. It's been miserable. Since I started this month I've been dealing with Lyme rage, anxiety, leg pain, arm pain, heart pain, spleen pain, and neurological issues like twitches, spasms, tremors, eyesight issues, dizziness, and such. I expect this to happen when I start new antibiotics and supplements though, cause I'm herxing. Hopefully this won't last too long and that 'change for better' Dr.N was telling me about will happen this month. 

This month I started a new antibiotic (taking 2 altogether now) and started 3 new suppliments (taking 13 altogether now). The supplements and antibiotics are focusing on attacking the cysts that are formed with the bacteria that are in hiding. 

Because it's been such a rough start to the month, I've been reading over a lot of pictures I've saved on my phone from Lyme awareness websites, and Facebook pages, and pictures sent to me for encouragement. And I wanted to share them with you. Some are focused on Lyme and others could encourage anybody. So I hope these will be uplifting and encouraging to you wherever you are in life. Lymie or not, we all need encouragement at times.