Month 8:Good Start

Well I saw Dr. N yesterday.  And I left feeling so hopeful and uplifted. I really struggle with thinking I won't respond to treatment, I'll always be sick, this is a waste of time, this is my forever, blah blah blah. But, yesterday, I left crying happy tears cause I felt encouraged and like there is still hope for me yet! 

He said I seem better to him. He said he didn't want to negate all the pain I'm in, but I was more alert and was talking better. This was so great to hear! After dealing with this for so long I think I have a hard time seeing the positive changes. And my family has been so wrapped up in the middle of it- that it's  hard to see improvements when you're in it day in and day out. 

We were also going back and forth about retesting me for Lyme Disease. I did a blood test at the beginning of all of this, but because of all of the antibodies built up, it was "grey" results. We decided to pay the $200 to test me again. For the sake of my insurance company and him treating me. At one point he said,"this isn't about me, it's all about you." He's so great! Really cares about me. He also said if need be he'll call the blood work place to speed up the process. He said he's not afraid to yell at someone and that it's way to difficult to get me what I need. That's a caring doctor for you! 

He's keeping me on the PICC line another month and put me on some other suppliments and antibiotics. The coinfection, bartonella, is showing up, so I'm on stuff to knock that out. He was pretty happy I was showing a lot of Bart symptoms cause that meant it was at a place to be killed (or something like that. This medical stuff really confuses me). 

He also said I'm responding to treatment! Ah!!! This is the best thing anyone has ever said to me (sorry, Tanner. "I do" comes pretty close ;). 7 complete months into treatment and I'm finally responding. I mean, I don't feel much better to be honest, but little things count, folks. Responding doesn't necessarily mean I'm feeling better or will be in remission tomorrow, but it means I'm not reabsorbing the toxins back in- I'm moving forward! 

Thanks for praying :) I needed to hear those words "I see improvement" yesterday by my doctor. I've still got a crazy journey ahead of me, but I feel like I'm actually moving along now, not just stuck. I see him in a month. We will see what happens in 4 weeks. HOPEFULLY, just more improvement and steps towards remission. 

I already had hicup with pharmacy stuff. Hopefully that's it for the month. No EMT, no ER, no bad reaction to medicine. Just a smooth sailing and positive month. 

Quite a few of you texted me and messaged me on Facebook the past couple days. Sorry I havn't gotten back to you yet. I've been pretty exhausted the past couple days. I'll get back to you soon :) 

Energy Expelled: I'm SO irritated right now! I think I may need to lock myself in my room before/if it turns to Lyme rage. Stupid toxins in my brain. Like usual my hands, wrists, eyes, head, and neck hurt. This took like 2 hours to type. I hope it's understandable to you all. 

~ "Your grace is enough for me." 

Month 7: The Stories

Month 7 was getting-used-to-a-PICC month. This past month I had two very bad reactions to some medication, called 911, went to the ER, and experienced some major herxing. 

I'm not a fan of the PICC line. It feels as if I have a third arm, but I can't use two of them. Showers and baths have become really hard to manage. I wrap my PICC arm with plastic wrap, tape on top, bottom, and side, and wrap this water repeller thing around it as well.  I try to stay away from showers because I end up just using one arm for everything and just exhausting myself. It's like my own marathon. The spoons used aren't worth it. Baths are more time consuming, but I can sit lol! 

The first week on the IV antibiotics I was horribly nauseous. Like the kind of naseous you can't think, move, or breathe with. We finally found the trick to drinking ginger and rooibos tea, eating right before and after, taking a ginger tablet with food, and constantly wearing my sea bands (these rock! They are acupuncture point wrist bands. Black bands on both arms. I'm so cool ;). And a friend of the family's has been bringing me juices that have helped- and tastes great! 

After that week the pain got really severe. To the point where I was up till 2am crying at nights. I was having horrible mood swings, dealing with intense anxiety and lyme rage. This lasted a couple weeks. My family are all saints walking this out with me! It was pretty difficult. I knew I was herxing pretty good cause when I herx I get terrible leg and lower back pain (my kidneys are fine. I get them checked weekly). Just hoping and praying the die-off is leaving my body, and the toxins are not reabsorbing like last month. 

This past week I've been feeling flu like all day, and a couple hours after I finish the infusion I go down hill with pain, and neurological symptoms. 

While there have been some symptoms that have been worse, I have seen a few positive changes. I sleep a little more. Not nearly as much as I should be, but I'm not up all night. I feel like my stuttering has gotten better. And instead of not being able to walk a lot cause I fall and have poor balance, it's more of knee pain, and just being stiff. While I do see minor positive things, there is still a lot of symptoms that have not gotten better. I just hope I'm herxing. Die Lyme! Die! 

 

My home nurse comes once a week to change my PICC line dressing and to make sure all is well. I also go to labcorp for blood testing each week. Making sure my kidneys, liver and gallbladder is good. So far so good :) 

Story Time: 

So, the first week Dr.N gave me a sleeping pill and pain reliever to try. The pharmacist told me I could take both at night before bed with no problem. NO! She was wrong. That was a big problem. About 20 min into taking the pills I started hallucinating and freaking out. Finally threw up - that helped. Those pills need to be taken separate and one with food. That would have been nice to know before I was on a magic carpet ride through San Francisco with gorillas. 

Then about a couple weeks ago I got extremely sick. Like I truly, honestly thought I was going to die. I started a new medication that we think did not mix with something I was already taking. After I threw up (that's always the trick) I heard Tanner say "why can't anything go easy for us." I like to think of it as another story to tell. I've got lots of medical related stories.

All along I have been told if air got in my PICC line I could die. I have been very careful with this. Seeing as I hate this thing and just want everything to go well and get it out! A couple days ago, right after I finished my IV infusion, the end piece of my tube came off! This is the piece that the IV, anti-blood clotting, and saline solution attach to. Which meant air was getting into my tube. I, like the rational Bekah we all know me as, held on to the tube with my right hand and held onto the broken piece with my left. I proceeded to run around the table screaming "I'm gonna die! I'm gonna die". This made my mom and brother start to panic as well. My mom calmly  called 911 using two different phones. She reassured me I wasn't going to die and told me to put the cap back on. My brother stood in the room like a deer in the headlights. The EMT folks told me to go to the ER. The ER folks made sure nothing was broken on the line, pulled the air out and said all was well and I won't die.  Not how I wanted to spend my night, but I'm glad all was well. And I didn't die! The good part was I was in and out in under 2 hours! Whoop! Didn't miss the last episode of 'Friends' that night either ;) maybe another time I'll tell you about the doctor who gave me the third degree about Lyme not being in CO. 

I get to see Dr.N today. Looking forward to hearing what he is going to say. I can't wait to tell him all of my stories either ;) I feel like at the end of all of this I'll be one of his favorite patients. Not because I was easy, but because I always have interesting stories with my health! Hard to forget me haha

May is Lyme Disease Awarness month. Please Please Please take this month to do some reaserch on LD. No matter where you live, who you are, or your age- you can get it. It's easily misdiagnosed, and if not treated properly or in time it's deadly. You have to do the reaserch too. Don't expect your doctor to come up with LD and treat you. I got the 3rd degree from the ER doctor the other night. He didn't think I had LD after meeting me 5 seconds prior.  Check out "Under Our Skin" on YouTube and check out the websit  ilads.org. Lyme Disease is not something to mess with! It's the great imitator. And not just given by ticks! 

Energy Expelled: As you can tell it's taken me a few weeks to write. Just been too exhausted. Took me about 3 hours to type out. Currently my hands/wrists are not too happy with me. I've got a pretty good headache with some neck and back pain. My chest is burning and tightening up. And I'm dizzy/nauseous. Nap time! 

~ Today, there is still hope... 

Month 7: part2

Well, it wasn't that bad getting a PICC line put in. Not my favorite thing to do nor would I like to do it again, but it wasn't horrible. I think it was a little more painful than people told me cause my body wasn't responding very well to the procedure. The woman doing it had to numb me twice cause the first time I didn't go numb, and felt putting it in. Then my vein wouldn't take the line and she had to find another. I was pretty sore, to say the least, the rest of the day and a good bit today. But it's done! And it's in! And I'm okay! Jesus gave me a lot of peace. 

So blessed that my mom, husband and best friend A were there to support me and encourage me :) 

So, right after it was done the three of them walked up to me and gave me a funny face. Cause between the procedure being done and them taking 7 steps over to the bed I had formed a hive under my left eye. Just one! Didn't itch or anything. Just a random white bump on my face haha! The nurse wasn't concerned because it wasn't near my PICC line, and started getting smaller as fast as it popped up. Probably resulted from all stress I had built up. The nurse said, "You're body is kinda weird, but you're cute." 

God hand picked that nurse for me. She knew the severity of Lyme Disease. She didn't have it, but watched someone very close to her suffer and die from it. So very hard and sad to hear her story. 

The nurse came today to teach me how to give myself the treatment and such. I was not looking forward to this, but so ready to start feeling better. I took quite a few taurine before hand. It wasn't bad at all. Actually, totally easy. She comes again tomorrow to make sure I understand everything and am able to do it in my own the rest of the week. One day down! 

I'm still in shock it had to come to this and take this long to get proper treatment. I'm so thankful for God's peace. "And the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus." (Phil 4:7) It's God's peace that's getting me through. 

Energy Expelled: My arm with the line is SO sore now. Even more so than before. My hands hurt. Headache. My neck and back really hurt. Legs are so uncomfortable and achy. Okay IV, you need to work! Ready to walk out in remission. 

~ "But the Lord stood with me and strengthened me." 2 Tim 4:17

7th Inning Stretch

Oh boy! Am I being stretched these past couple weeks. When I went and saw my Doctor, the end of April, he informed me I need a PICC line. It was kinda a commical appointment, in a weird way. Right away when I walked in the room Dr. N started trailing off about how he's been thinking about me a lot. He then started saying how he might put me on a PICC line and need cocktail treatments (funny Lyme brain story: I thought he was talking about alcohol and I got excited because I've had one drink since treatment started. But then I realized he was talking about IV treatments. I could really go for a hard cider ;). He stopped after a bit and said, "Oh, I have not even asked how the past two months have been. I bet not well since I've thought about you a lot... But how's it been?" I then explained to him how the past month has been hell. He did some tests and came back saying I need a PICC line. 

He told me I remind him of the main girl from "Under Our Skin", the swimming girl. I asked if it was a compliment and he said she's pretty and had her 15 minutes  of fame.... Haha! Well, that's great!

I thought I understood the headache I was about to receive trying to get a PICC after Dr.N rambled and ranted for about 20 min on how to get it, but I was poorly mistaken.  I underestimated the size of the headache. In the past week and a half I have dealt with my insurance company, talking back and forth with my Doctor and a company to send me my medication, the hospital where I'll get the PICC, my insurance company, a home nurse company and my doctor office. At least a handful of times each. And they weren't short conversations either. 

Without saying, Trying to get this PICC line has been such a headache. Getting into the hospital to have it done, seeing what/if my insurance will cover anything (barely any), dealing with large amounts of paperwork, relating information from group A to group B and A to C and D... It's crazy. And to be honest, I don't understand most of this stuff. Insurance companies, and how to pay 4 different groups, and when to pay them, and processing so much information. Part of Lyme Disease is intense anxiety- I think I have that symptom down. But not really. 

At first I was totaling stressing trying to talk to these places, especially my insurance company. I just wanted to revert every conversation to Tanner. But he wasn't able to take every conversation. He has a job where they want him to work. So I had to figure it out on my own. It was trial by error. I actually feel kinda empowered now figuring all this stuff out. I mean, I feel bad for the people who have to talk to me with my Lyme brain, but I'm slowly figuring it out.

That's not to say they're not any less confusing or scary- but I'm getting my PICC line Monday so I must have done something right! 

I'll have a nurse come once a week to teach me how to do the IV meds. I guess I'll just add this to the list of medical things I've learned along the way. I feel like I should get an honorary doctorate degree soon! 

I was freaking out about the money of it all, having a PICC line, and doing the treatment myself each day. But then someone told me to picture PAC-MAN going through my veins and eating all the bacteria. I'm ready for some Lyme butt kicken and killin! Lyme Disease messed with the wrong chick! 

I am so disgusted at what Lyme has taken from so many people. The time, opportunities, jobs, adventures, relationships, money, education, and the list goes on.

These past couple weeks I've been so encouraged by the reminder that God is not gonna just restore what's been lost, but multiply it. Job 42:10 says, "After Job had prayed for his friends, the LORD restored his fortunes and gave him twice as much as he had before." That's the kind of God who loves me. One that doesn't just restore, but doubles it. That's hopeful! 

Energy Expelled: 4 hours to write. The usual sweaty hands, headache, dizziness, hand cramping, and my mom correcting my grammar. 

~ "Even though I don't know what Your plan is, I know You make beauty from these ashes"

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..."

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. 

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.