10 Crazy Comments: Don’t Say These To A Lyme Patient

I was thinking the other day at some things people have said to me (doctors, nurses, friends, strangers and family members) over the past three years …. and you guys, they made me chuckle … loud!

IF THEY ONLY KNEW!!!!!!

So, here are some things that were said to me, and I am sure you can all relate to a few of them … or all of them!

1- But, you don’t look sick.ย 

I think we have all heard this one and it drives me crazy!!! I am not sure if it is a compliment or if they are hinting in a nice/weird way that I am not really sick because I am physically not showing any symptoms. I never know if I should say “thank you” or “oh, but I feel really rotten on the inside.” A friend of mine told me she saw a bumper sticker once that read “if I looked like I felt I’d scare your children”, and that pretty much sums it all up.

2-ย What is Babesia? is it a skin infection?

FYI, this came out of a nurses’ mouth!!! My response to her “very close actually, it is a malaria-like parasitic disease that infects the red blood cells … it almost put me in a wheel chair.” Complete silence on her end!!

3- Maybe you just need to get out of the house.

I mean, I don’t know about you, but I really really enjoy laying on the couch with my robe and pajama pants on all day, feeling utterly useless, my hair looking like I was electrocuted in my sleep, bags under my eyes and groaning because of how much pain I am in!! Trust me, if I COULD get out I WOULD!!!!

4- Maybe you need to exercise.ย 

Imagine having the flu, feeling hungover (for no apparent reason) and got hit by a huge semi! Yep, that’s what we feel like most days. If you want to avoid a bart-raged woman or man (and trust me, you do) do not tell them maybe they need to exercise!!

5- Are you drinking enough water?

This is not the flu guys!!!

6- Maybe if you get pregnant it will go away.

BAHAHAH! That is all I have to say to this one.

7- There’s no way you have Babesiosis, it is very very rare and most commonly found in animals. (ER doctor)

Well, that brings me so much comfort that this illness is being acknowledged in animals but not humans! Cool Beans!

9- You want to believe you have Lyme, but that’s not what you have.

I mean, having Lyme Disease is the “in thing” now a days, why would I not want to have it!?

10- Are you sure you are just not depressed?

“Father, I am bart-raging right now. Breath peace in me, Lord”

 

I know people have said some crazyyyy things to you, if you feel comfortable enough to share them here, I would love to hear them!! ๐Ÿ™‚

Blessings & Love,

Aisha

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Finding the New Normal

Am I going to be normal again?

I have asked myself this question a 100 times.

I day dream of doing Ballet again, I day dream of running on a cool, fall morning again. I day dream of having an abundance of energy again, I day dream of being with family & friends and actually enjoying my time with them instead of wondering if I am going to croak right there, right then, in front of everyone.

I spend too much time thinking about how I used to be healthy and all that I was physically able to do, and I forget about what I am currently able to do! It is an awful mindset and it puts me in a deep pit of depression!

No more …. I am done!

When I am sitting, complaining, that my eye floaters are driving me insane and wishing I had better vision – who cares! I mean really, who cares if I am swatting “flies” away when in reality they are my eye floaters. God has blessed me with two eyes that can see. I can see the beauty that is around me, I can see when my husband winks at me (one of my favorite things), I can see my beautiful family and so forth.That is a huge gift.

There were so many incidents when my husband and I would take walks and we would have to cut our walk short because my legs would get weak and shaky. Almost every time, I would secretly go to the bathroom and tear up because I thought my husband and I can’t even enjoy a beautiful summer walk because of me.

Two years ago, I had a very hard time walking. I couldn’t go to stores unless I held on to my husband or I was leaning against a cart for balance support. Today, I can walk by myself without having to hold on to anyone or anything! Yes, my legs are still weak, and yes, I still can’t run (YET), but I can walk with my husband (even if it is for a short time), I can run errands (even if I am exhausted afterwards), and this is another huge gift from God!!

I don’t know if I will ever be able to do some of the things I was able to do when I was healthier, and I want to be at peace with that.

I want to find the new normal for me this year.

I want to enjoy and be grateful for what I am able to do now and not look back at what I was able to do.

I want to enjoy my walks with my husband, even if they are 5 minutes long.

I want to enjoy our nights on the couch, watching movies, holding each others hands because I don’t feel good enough to leave the house.

I want to enjoy my time with my family, whether I feel awful or not, and remember the moments I have with them.

Time is short, friends …. we are not guaranteed a tomorrow. Let’s embrace and savor every moment!

I made a list of things I am currently able to do, and the smile on my face just grew wider and wider. I challenge you to do the same. Right now, get a piece of paper and a pen and write out the things you are physically able to do. It will shock you, and it will open your eyes to how little you lost from this illness! I used to say I lost a lot from this illness, but no, I gained way more FROMย the things I lost.

God’s gifts are endless … we just have to open our eyes and look a little closer.

 

 

 

 

 

 

 

 

 

So Many Meds

I was looking through some old photos and I came across this one. (sorry it’s large)

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That was the month I started treating Lyme & Co’s for the first time. My husband and I were going out of town and I remember looking at my bag and thinking “WOW, these are a lot of meds to take”, so I snapped a photo of it and sent it to my siblings saying “Look at all the meds I have to take.” I also thought I will only need these meds to get me better .. HA .. boy was I wrong!ย 

I threw away a lot of my meds and empty bottles, but I saved some just in case something happens with our insurance or whatever .. you just never know now a days! After I looked at this photo, I went and gathered all my meds and supplements that I have taken in the past year, and I would say this photo is just half of what I took – not including the empty bottles I threw away!!

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It’s crazy how many supplements/meds Lyme patients need to get better! You name it, and we are on it!

Ooooohh, the joy’s of having a chronic illness, right?! :p

Blessings,

Aisha

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What Did You Say?!

This has been my husbands favorite sentence all week.

My neurological issues scare me quite a bit, but this time I couldn’t help but laugh at some of the things I have been saying recently.

My sweet husband would look at me with a concerned/baffled/feel sorry for me face and I would just vomit out Lyme words that would make absolutely no sense!!

Here’s a quick story for you –

We have been having a hard time finding a Church here in our new hometown. So, Saturday night, we talked about watching Dr. Charles Stanley on TV Sunday morning. The following day, My husband was sitting on the couch, and as I was walking out of our bedroom I say … wait for it … wait for it … “Hey honey, did you want Dr. Charles Stanley for lunch?” … my husband, for the 100th time this week, says “what did you say?!?!”, we both look at each other quietly and burst into laughter. He then proceeds with “no no, Dr. Charles Stanley doesn’t really sound that good for lunch .. thanks though.”

I originally wanted to say “Hey honey, did you want to watch Dr. Charles Stanley this morning?” ย I have no idea where the lunch part came from nor was I thinking about lunch, or anything that pertains to food for that matter!

I started feeling very ill Monday morning with extreme vertigo, AWFUL headaches, stomach issues and extreme fatigue. I thought I was herxing really bad, relapsing, or coming down with a nasty bug. A few days ago, both my husband and I smelt something funky in the basement. My husband calls for someone right away to come check it out, and come to find out, we had two gas leaks in our home – that’s the last thing my body needs right now! It was fixed that night, but I left and spent the night at my in-laws house and sure enough, the headaches and all that stuff went away the next day!!

Anyways, so I keep telling my husband my brain was being filled with toxic gas this past week and that is why I was saying all these weird words! ๐Ÿ˜‰

I know how scary it can be with these neurological issues – memory loss, word retrieval and all that stuff – it can be extremely depressing and frightening, but sometime it is good to just laugh at it rather than dwell on it. For me, it feels like a small victory against this illness!

This might sound really strange to you all but sometimes (not in public or out loud .. I promise:)) I talk to the Lyme and Co’s (which by the way, I am certain they are somehow related to the devil … cousins or siblings … especially Babesia). Yesterday, for example, as I walked away from my hubby after our laughing attack, in my mind I said “I bet you didn’t see that coming, you nasty little things.” Other times, on days where I feel like this illness is trying really hard to get to me I would say to it “you have no control over my body or mind.” Our minds are sooo powerful, you guys … ย it creates reality in a ‘sense’!! The way we think determines what we can and can’t see or do. We have a huge advantage over this rotten illness … let’s use it!

Last year I would have been bumming out big time for messing up my words as much as I have in the past week. I would have went on and on about me not sounding smart and it would have spiraled into a sobbing fest.

Let’s try these together –

If you can’t retain any information while you are conversing with someone, just say “wow, that is crazy” like I do ๐Ÿ™‚

If you are driving and forget whether the turn signal goes down or up for left or right turns – it is okay – just put your hazard lights on. (this totally happened by the way)

On a serious note, no matter how weird we may sound or act … let’s add a little humor to it and laugh at ourselves! I am not going to let this illness win and neither are you!

Small victories, my friends … small victories!

“With enough small victories one can overcome impossible opposition and odds”

 

 

 

 

 

 

 

 

 

 

Too Busy For God

What a busy few weeks it has been!

When I first started this blog my goal was to write at least one post a week (since I have all the time in the world) but, that didn’t happen because life was really busy for the first time in a very long time for me. I forgot what busy felt like and how busy life can be, and to be honest I am not sure I miss it all that much.

I was just telling a friend about a month ago how much I miss being busy and on the go instead of having so much time on my hands. So ironic I got a glimpse of it the past few weeks, because it opened my eyes to a few things I really needed to see.

I was too busy for God. Oh, how I hate admitting that. Unfortunately, the busyness of life does that, and for the first time EVER, I missed being cooped up in our tiny apartment sitting at the feet of Jesus and sipping on the Word of God. Don’t get me wrong, I am very very grateful I was able to go out and about with family and friends and enjoy my time with them, but there’s a different and a deeper kind of joy that comes out of bathing in God’s Word every day, and my soul yearned for that while I was away and busy.

I was in Duluth one weekend, Iowa the following weekend, and Rochester and Lake Vermilion the next, and I had appointments galore during the week. My sick body was not used to doing all of that, and any down time I had, I would plop myself on the couch and not move or blink or anything… that’s how tired and busy I was. I felt like I had no time or energy to dig into scripture, or even pray for that matter, and I did not like that feeling one bit!

I truly believe busyness is a great distraction of the enemy. It is his desire to keep us too busy for God.

Since I became ill and have so much time on my hands, I spend quite a bit of time with God. I wake up, get on my knees, close my eyes and pray. I ย spend some time working on my Bible study (hope y’all are doing Priscilla Shirer’s Bible study, Gideon, this summer … it’s fabulous). I spend time digging into His Word and listening to worship songs … all in our tiny little apartment. This has been my almost daily routine for the past year and It dawned on me last week, in the midst of all the busyness, that I am very blessed for all the free time that I have because I get to spend it with Him. Wow, what a huge blessing that is!!!

When I woke up Monday morning, I got on my knees and, shockingly, I thanked God for my illness. Even though I was super dizzy, my body hurt and I had zero energy, I still sincerely thanked Him for this awful illness (I bet Satan didn’t see that coming :p). For the first time ever It felt like I was looking at suffering from God’s perspective and it felt good … so good!!

Today, Lord, I thank you from the bottom of my heart for this illness. Thank you for the days when I am not able to leave the house because that is when you breath love and hope into my soul. I will always be still for you, Lord. ย Amen