Mystery Illness – My Old Notes

I have a really old laptop, you know, the ones that could be easily mistaken for a TV …. it’s huge! It doesn’t really work all that well .. so my husband and I just put it away and haven’t used it in 3 years.

I’ll get back to the computer story here in a minute, but I started a new herb two weeks ago and at only one drop it has been making me feel pretty icky. I haven’t left the house much lately because of my health and because we have been having glorious weather (by glorious I mean never ending snow) here in MN. Any folks down south want to take in a sick gal? my achy body needs warm weather!!!

But, I digress, let’s get back to the story …

I have been on a looking through old photos kick lately and decided to take my old laptop out and look through some of the old photos that are in it, as I was doing that I stumbled upon a file called Mystery Illness and I thought to myself “NO WAY”!! When my symptoms began 3 years ago, my primary then didn’t know what was going on with me, so I decided to type out dates, what I was doing then and what my symptoms were for him so he could help me figure what was going on with me. I thought I deleted the file years ago but apparently I didn’t!!

{Sigh} It brought back so many emotions … I remember where I was sitting when I was typing it, I remember the anxiety and the frustration, I remember my arms feeling so weak while my fingers tapped on the keyboard and tears of sadness and desperation silently rolled down my cheeks.

Here it is, copied from my old computer (I did remove the doctors names that were caring for me at that time):

September: Went to the ER for Severe lower left abdominal pain, diarrhea and nausea. Doctor diagnosed me with an Enterovirus.

Oct. 8: Went camping.

Oct. 12-13: Went to cabin.

Oct. 14: Went to Duluth – Woke up around 3:00am with upper left abdominal pain and nausea.

Oct. 15: Duluth – Woke up around 3:30am with excruciating upper left abdominal pain and nausea. I made myself vomit and the stomach pain went away.

Oct. 16: Felt sick and weak all day.

Oct. 17: I called to make an appointment for my stomach pain, but they insisted I go to urgent care/ER.

* Made a follow up that week with Dr. and she prescribed me medication for GERD.

* Symptoms did not get any better. On and off dizziness.

Oct. 29: Felt very sick all day. Stomach pain, nausea and headaches.

Oct. 30: Felt the same as the day before.

Oct. 31: Woke up with severe pressure in my head. Did not get any better after taking Ibuprofen or extra strength Tylenol.

* Went to Dr. that week and mentioned the pressure in my head. She looked in my ears and said I had fluid buildup in my ears and later prescribed me Tramadol.

* The following week, I was riding in the car with my husband one night and I noticed the street lights hurt my eyes so bad I had to put my head down.

* That same week, I was watching TV one night and I felt an odd sensation in my head, almost like a crawling feeling. It was very uncomfortable and weird.

* Made an appointment with Dr. that following week and he noticed my sinuses were very clogged. He prescribed me steroids and over the counter medication.

* Started steroids that Friday and felt instant relief with the pressure in my head.

* Saturday night – Right when I was about to lay my head down, I felt as if my scalp was burning. Since then, it has been painful to sleep on the left side of my head and on my back. Also, the left side of my scalp has been very sensitive to touch.

Symptoms:

Headaches – the pain varies from spot to spot. At time, pressure in my temples. Shooting pain on the left side of my head and the back left side of my head. Sometimes pain behind both ears.

Extreme nausea.

Some abdominal pain but not severe like it used to be.

Cooling/pain sensation on my left temple and left side of my neck.

Shooting pain in my spine.

Odd sensation back of the head and shoulders.

On and off twitching in my left eye, and left side of my lip.

Tingling and odd sensation in my left arm and left leg. (I noticed while carrying plates at my work, my left hand felt weak. It was hard for me to carry three plates at once, and I had been doing that just fine for the past year)

Pain in my left eye at times.

Pain in left jaw at times.

Tingling in my left cheek at times.

Very fatigued (towards the end of the night, I am very very tired. I almost feel like I am drunk)

* Something that has been really bothering me, and it might sound stupid but normally I am a very good speller, however, lately I noticed it takes me a little while longer to figure out how to spell a simple word.

I hate to mention I went camping (never sprayed any tick repellent or anything) in August of that year as well (a month before my symptoms started).

After I gave my Dr. these notes, heΒ ran an ELISA test and sure enough a positive babesia (ding ding ding), but I was only treated for one week and then 50 more symptoms showed up after that!!Β I completely forgot I had some of these symptoms, so It is a good reminder to look back and see what has improved and what hasn’t!! This made me want to write down my current symptoms so I can look back a year or so from now and see what has improved and what hasn’t!!

Blessings & Love,

Aisha πŸ™‚

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You Know You Have Lyme When You ….

1- Write “Lyme” on the grocery list instead of “Lime”.

You know you have Lyme when you …

2- Are talking and mid sentence you completely go blank and ask what you were just talking about. (Put Lyme patients in a room together and you end up with the best comedy show EVER)

You know you have Lyme when you …

3- Know how many moles you have on your body.

You know you have Lyme when you …

4- Have a tick repellent spray bottle, tick repellent wipes and a tick remover with a magnifier in your purse ALWAYS!! (Maybe this is just me haha)

You know you have Lyme when you …

5- Are excited for your new shipment of supplements to come in.

You know you have Lyme when you …

6- Vacuum the floor a 100 times during spring, summer and fall.

You know you have Lyme when you …

7- Sit there for 10 minutes trying to figure out how to spell the word ‘roof’ .. “is it ruf? ruph? .. crap I need to google it.”

You know you have Lyme when you …

8- Ask if you will be anywhere near grassy/woodsy areas when planning an outing with family or friends because you need to be prepared!!

You know you have Lyme when your …

9- Body can’t handle heat nor cold. You have ten layers of clothing on in the winter because you can’t warm up and you feel like fainting during the summer because you’re too hot.

You know you have Lyme when you …

10- say “oh it’s a full moon … that must be why I feel so crappy”, and everyone looks at you like you are coo coo.

You know you have Lyme when you …

11- Have returned furniture and numerous articles of clothing because they have a strong smell to them that no one else could smell but you.

You know you have Lyme when you …

12- Know every antibiotic that was ever made, how it’s spelled and how it’s pronounced.

You know you have Lyme when you …

13- Leave the house wearing slippers and had to drive back to put regular shoes on.

You know you have Lyme when you …

14- Are very well known in the Emergency Room … maybe even by your first name.

You know you have Lyme when you …

15- Have every prescription under the sun given to you and could possibly open up a pharmacy of your own.

You know you have Lyme when you …

16- Start thinking that some of the herbal names could be cute for a future daughter or son.

This list is never ending for me!

How about you?

you know you have Lyme when you?!?

Blessings & Love,

Aish

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.Β 

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-Β 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.Β 

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!! πŸ™‚

Blessings & Love,

Aisha

Β 

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?” Β 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! πŸ˜‰

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 … Β 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 πŸ™‚

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”

 

 

 

 

 

 

 

 

 

 

10 Crazy Things I Do Because of Lyme

I was thinking the other day how coo coo this illness has made me, and I couldn’t help but chuckle.

I don’t know if you all can relate or not, but here are some things I realized I have been doing since being ill with Lyme and Co’s … please don’t judge haha!

1- I carry a tick/mosquito repellent with me EVERYWHERE I go.

2- During spring and summer, I vacuum everyday, sometimes twice.

3- I am pretty sure I know how many moles I have on my body.

4- If my husband is anywhere near a woodsy area, I have him take his clothes off in the entry way and put his clothes in a bag so I can wash them, and he goes straight to the shower …. bless him πŸ™‚

5- I write Lyme instead of lime on my grocery list.

6- I’m sorry, but Julia Roberts and all those actresses have nothing on Lyme patients. I could feel completely awful but still attend a family function and force myself to look and act as if I have nothing wrong with me … all with a smile on my face. We deserve an Oscar.

7- If I am conversing with someone and you hear me saying “that’s crazy” a lot … it is most likely because I am not a 100% listening to what they are are saying, because I am thinking about the 100 crazy symptoms that are going in my body, like “O crap, was that my heart that just skipped a beat? am I having a heart attack?” “Did my eye and face just twitch uncontrollably? Am I going to have bells palsy?” Β … and trying my best not to fall off the chair!

8- I have a box of surgical masks in my cupboard for when I clean, because I can’t handle the smell of cleaning products. My husband and I live in an apartment and we have hard water which makes it harder to clean things. Well, one night we both tried to tackle the tub and we used almost every cleaning product we had. I had the mask on the entire time. I kept it on a little while longer and watched some TV with it, waiting for the smell to go away … Β my husband could not stop laughing and he, of course, had to take a photo of me. I would post it on here, but it is kind of embarrassing!

9- I mix up my words soo much. I am not sure if it is funny or scary. For example, I was trying to explain where a store was to my husband and I said “It is next to Good Sporting Dick’s” instead of Dick’s Sporting Goods.

10- Once I have a yard. I will be that crazy neighbor walking in my backyard with stilts on … I think I need prayers haha!

I am sure there is more … but my Lyme brain froze! I am sure some of you can relate to these … I would love to hear some of the coo coo things you guys do because of this illness!! πŸ™‚

 

Blessings & Love,

Aish