Month 8(prt 3): Random Ramble

Well, month 8 hasn't been my favorite. I'm still off all my oral antibiotics for Lyme Disease- which means I have not been doing Lyme Disease treatment in two weeks. I chatted with my dr a few days ago to discuss the gut infection situation. He said he can't put me back on LD treatment until we know for sure the infection is gone. Otherwise it can come back with a vengeance. I finished the gut infection treatment a few days ago and will see him Thursday. Giving me about a week, until I see him, to make sure the gut infection is positively gone. 

When I was talking on the phone with Dr.N I was explaining to him how bad my symptoms have been and he said I'm relapsing. Which totally sucks! I'm so frustrated cause just three weeks ago I saw him and he said I was responding and improving-but I feel like now I've lost all that. Pretty discouraging. 

Never thought I'd say this, but, I miss my IV and oral meds. Now that I'm relapsing I can look back on last month and see how they were helping. In the moment it was hard to see, but I believed Dr.N that I was getting better. And now that I'm off of them I can see the good change that was happening. I really hope I can start treatment again on Thursday! 

Something I've been learning recently is how important it is for me to take every thought captive. I struggle with depression, which I don't know if that's the disease or the fact that I've been cooped up in pain for 8 months. It doesn't naturally come to me to chose hope. If I don't focus on God's promises, prophetic words, and hope I can sink down fast. 

I've had to learn to focus on the truth of things and not the heaviness and doubt. I constantly have to remind myself that God's plans for me are for good, for me to prosper, and to live an abundant life. That God works all things together for good and His glory will be shown in and through all of this. That God does not like seeing His children in pain, but on the other hand He doesn't waste anything. 

I know that people can die from LD, and there can be perminant damage, and may never go into remission. But I just can't think like that. I have to focus on how God made me victorious, more than a conqueror, a co-heir with Christ, a warrior and a fighter. I know that God is good, kind, Healer, consistent in His character, unrelenting, and His grace is enough. I know that nothing is wasted in His kingdom, and He wouldn't allow this to happen and leave me hanging. And above it all I KNOW He loves me. Without a shadow of a doubt He loves me. I have to focus on these things. I have to focus on Christ, otherwise I sink. 

Focusing on the Truth of things and His character gives me peace. When I get away from that I get depressed, and restless. It's a choice I'm learning I have to make moment by moment. 

My pastor once told me to not be under the circumstance, but above it. And that's what I'm learning. I'm learning to thrive in this sitatation, not just survive it. 

Sorry this was a bit scatter brained and random. Just getting my thoughts typed out was a challenge. Lyme brain is hard to work through- but I'm trying. 

Today is the last day of Lyme Disease awareness month. Please take a moment to check out ilads.org or watch "under our skin" http://m.youtube.com/watch?feature=youtu.be&v=CVzXsKvN2ck 

Even if you think Lyme Disease has nothing to do with you, you may be surprised. There is valuable information in this documentary that will surprise you. Please get educated about Lyme Disease! Ignorance is not bliss in this situation. 

Energy Expelled: I am beyond exhausted. My typing hand is tight, cramping, and really sore. My vision is going in and out. The ringing in my ears is loud. Bad headache, leg pain, and back pain. 

~ "They will have no fear of bad news; their hearts are steadfast, trusting in the LORD." Psalm 112:7 

Month 8(prt2): An Adventure

As Tanner once said, "It can never just be easy for us." My family and I joke about how I'm an "overachiever" in the medical world. I can't just get a normal sickness- one that's common, recognizable, and easily treated. I have to get things that are abnormal, have controversy and just make life downright miserable. 

When I saw Dr.N, 2 weeks ago, and was explaining to him my symptoms, he mentioned how I may have a gut infection. He told me to call him in a week if nothing clears up and we'll go from there. Last Friday I called him and he told me to get tested. Saturday morning he told me to get off all oral and IV antibiotics. And Monday he sent in a prescription, to kill the gut infection, for me to start. He told me to stay off all oral and IV antibiotics (except for the ones to kill the gut infection) untill I see him the first week of June. PICC line stays in and at my next appt. he'll decide what we'll do about Lyme treatment. Basically if we keep doing the IV or not. 

So I'm not doing Lyme Disease treatment for the next two weeks and am focusing on the gut issue. Super fun ;) I'm flushing my line everyday still. 

Dr.N did tell me that this infection could be the reason to why my Lyme just won't freaking die! It also could be why I'm always on yeast stuff. If that's the case that's so exciting! We won't know till I see him next, but here's to hoping!!! 

No, being off LD antibiotics is not like a vacation. I wish! Not only am I still on suppliments (which are just as mean as abx), I feel like death. Pretty sure my Lyme is flairing up. My legs hurt SO BAD! It's this burning, on fire, deep, "growing pain". And my head keeps getting this needle shooting pain. My lower back is in constant pain and at times unbearable. My feet hurt to walk on. My chest is tight. I feel flu like. My joints are stiff. My spleen hurts terribly. I'm exhausted! My finger tips are doing weird things. Let's go with PAIN! Lots of it. 

But... If taking this "break" to focus on my gut could help the Lyme- I'm all in! 

My nurse came over Tue and could tell I wasn't doing too hot. Which is not as exciting as last week when she said she could tell there has been improvement. You should have seen her face when I told her about my infection! We ended up just laughing. Cause, let's be real, who has a medical file like mine at 23 years of age?! She said if she didn't know me and just read my file she would say I was a hypochondriac, but really I was just handed a bad deck of cards. But we laughed. What else can you do? 

I can't wait to see what God's gonna do with all this. You can't have a medical file like mine and it be wasted. 

She also told me I am one of her favorite patients and have the most interesting stories. And that there is never a dull moment with me. All her other patients are old and have had a lifetime of stories to tell. So I'm not sure if that was a compliment or not... 

My PICC line has been looking wet and had these yellow pieces around it. It's also been itchy and sore. I was sharing this with her and what Google said about it. She told me to stop going on the internet and just watch mindless TV. Haha! 

Right before Dr.N and I hung up on Mon he told me to hang in there. I'm trying! 

Energy Expelled: 4 hours to write. My head is not happy. Hands are hurting and cramping up. Time for my heating pad on my back and ice pack on my spleen. Thank God for those! 

~ It's always darkest right before the dawn 

Month 8: My Job

My job. What is my job in all of this? I watch people finishing up their degrees in college. Some of my dear friends are amazing mamas. People are going to work: part time, full time, two part times. My newsfeed on Facebook has people talking about job interviews. I watch Tanner and my dad go to work everyday. I watch my mom go to work some days. And I watch my brother work and go to school. 

And what do I do? My days aren't filled with work or school or parenting. I'm not waiting on a job interview or test score or running errands. My chore list is a mile long cause I'm not crossing anything off of it. When people ask to come see me I have to plan ahead and make sure I have rest days in between. I'll do one load of laundry and my mom or Tanner finishes it. My cat is supossed to get half a scoop of food morning and night, and to be honest, if my mom or Tanner doesn't feed her she's not eating. Unless she comes and bites and paws at me in the afternoon. My bathroom normally gets cleaned every other week - and that's generally by Tanner after he's just worked a 60 hour week. 

I spend most of my days on the couch or in my bed cause my legs hurt too bad. Planning out my meds and when to eat and when I can't. Calling for whoever is home to fill my water up. After I do my IV medicine in the late afternoon I'm done for the evening. Practically useless. To the point people are carrying me to bed, fetching my heating pads and ice packs, bringing me pain meds, and basically doing everything for me. 

Sometimes, on the weird occasion, I'll go on a date with Tanner (doesn't last long), go to my bible study, have a friend come visit or get my own lunch (I don't make anything. Just warm it up). 

I sometimes, rarely, have tolerable days that I have to pay for later cause I overdid it trying to enjoy the day. Which basically means I just did something. Like the other night we took our moms out for Mother's Day dinner. Went to a quiet, small restaurant. I made it about an hour then had a terrible evening and today is pretty rough. Tanner and I are celebrating our 2 year anniversary this weekend and I blocked out the days before and after to rest. I actually just canceled on two friends for next week cause I'm super stressed out and sick. 

I feel terrible canceling on people, having my family do a lot for me, complaining about my symptoms- just not being human. I feel lazy. Which is absurd, I know, cause I'm doing everything I possibly can! 

So what's my job? 

To rest. Give myself grace. And not feel guilty for it. 

I need to remember I am doing the best I can. I have an amazing husband  and mom and dad and brother who kindly and lovingly help me. They act like Chik-Fil-A people with a "my pleasure" attitude. And I need to be thankful for that and not feel bad for it. 

When my mom finishes my laundry cause I can only put one load in, I should be thankful for her and not feel guilty. When my husband gets my meds ready and carries me to bed, I should feel loved instead of like a nuisance. When my brother fills up my water bottle cause I'm too tired, I should feel blessed instead of lazy. When I cancel on my friends coming over cause I'm too sick, I should feel spoiled that they'll even reschedule and are so understanding. 

When I rest I'm getting better. The more I rest the quicker to remission I'll be and the sooner we'll all be dancing at my healed party! I need to remember this is not my forever and I'm doing the best I can. I'm not just resting, I'm healing and fighting for my life. 

If you're a Lyme Warrior- YOU are doing a fabulous job! Keep fighting. You're an inspiration, warrior, and fighter. Keep up the fight. It's gonna be worth it. 

Energy Expelled: My lower back and spine feels like death. My chest hurts. I have a massive headache. My legs, hands, and feet are burning. My eyesights going. I'm running a fever. My spleen pain is almost unbearable. I'm naseous. I don't feel too swell. 

~ "Out of suffering have emerged the strongest souls" 

Lyme Disease Awareness: What It Feels Like To Have LD

Something we say in the Lyme Disease community is "you don't get it, till you get it." I think that fits any chronic illness or disease. It's a world people don't really understand until they are walking it out. And as much as I sometimes wish people understood, I wouldn't wish this on my worst enemy. 

Explaining what I go through on a daily basis is really hard to do. And explaining some of my symptoms is close to impossible at times. Before I started seeing Dr.N doctors would give me the strangest looks when I tried explaining my symptoms. It's also hard to explain because I tend to look "fine", but how I look is the opposite of how I feel. 

I found some pictures on my Lyme awarness facebook pages that I think give a good idea as to what it's like to have Lyme Disease. These are some of the symptoms Lymies have to deal with... 

May is Lyme Disease awareness month. If you havn't please take some time and watch "Under Our Skin" on YouTube and check out ilads.org. Lyme Disease is a despicable disease that could affect you or someone you love-leaving you or them misdiagnosed or undiagnosed. Please educate yourself!  

Lyme Disease Awareness: What Is LD?

Because it's Lyme Disease awareness month I figured I should do a post about LD. So here are some posters/pictures/memes about what this disease is. I figured pictures are easier to follow and understand than me trying to explain it.  Thanks for reading this and learning about LD. 

Please take some time this month to watch "Under Our Skin". It's a wonderful documentary about what it's like to have Lyme and what it is. It'll help you understand what others are going through. Plus you'll then be educated about this horrendous disease- which could save someone you know or even yourself. You'll be very surprised by what's really going on! 

~ "Even the darkest night will end and the sun will rise." 

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...