Vacation & New Blog

Yikes .. it’s been a while since I’ve written a post!

My family and I went to Arizona to get away from the MN weather and bask in the AZ sun a few weeks ago.

It was wonderful!

Since I have been ill I have had very low Vitamin-D levels, I am sure this is very common with chronic illnesses, and I made sure my vacation consisted mostly of me lying in the sun … and that I did!!! I felt so good, you guys … hardly any pains, no aches, no dizziness, no fatigue, nothing … all those annoying symptoms were pretty much gone and I felt pretty close to normal for 5 days!!

Such a big tease!!

When we got back to MN, sure enough, the very next day I was back to feeling icky again.

Do any of you feel better during the summer?! Have any of you made that drastic move and relocated to a warmer state?

Now .. if only I can convince my small-town-Minnesotan-husband to move!!

Happy wife happy life …. write that down gentlemen! 🙂

Completely off the topic-

When I started this blog last year I didn’t know if I was going to enjoy it, so I purposely chose the easier way to start a blog and didn’t really put much effort to the design because I wasn’t sure if I was going to keep it. Well, since I thoroughly enjoy writing (who would have thought?) I have decided to switch from WordPress.com to WordPress.org and get a better design for my blog. I have been reading up on the switch and it sounds very confusing. I don’t want to start a new blog, I just want to transfer the contents from this one onto the next one! I don’t know how some people do this for a living .. it is very very confusing! To add on to the confusion, I have a Chromebook (don’t ever get a Chromebook) and it is run by Google, therefore, I am unable to download certain contents onto my Chromebook!! I might have to bust out my humungo computer and start using that one … we shall see!!

Hopefully within the next week or so I should have it all figured out!!

Blessings,

Aish Xoxo

 

 

 

 

 

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, he 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!! 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 🙂

Quick Health Update

My health hasn’t been the best lately. It has been very up and down (mostly down).

I decided not to see the Lyme doctor I was seeing … her and I weren’t on the same page on a lot of things and I just felt like she didn’t know how complex and difficult this illness is. I spoke with a few friends who have Lyme and they recommended a doctor in WI, so, I see her Sept. 11th. These people that I have spoken to are doing much better under her treatment, so, I am praying so hard that she can help me out!

I found out a few months ago that I have this gene mutation called C677t and I am homozygous for this gene mutation, which means I got it from both parents. You can click on the C677t right above and you can read all about it … it is very complex. When I was on antibiotics, I would get really really sick … I mean I felt like death. Part of it was the herxheimer reaction and the the other part was because of my gene mutation. I mentioned before that detox is sooo important with this illness, because when the bacteria dies, you want to detox as much as possible to flush out the toxins and dead bacteria from the body. Well, this lovely gene mutation that I have makes it hard for my body to metabolize medication and my liver has a hard time detoxing everything out, so I had A LOT of toxins building up in my body and that can be very very dangerous!! Also, anyone who has this gene mutation and has a chronic illness, they become more sick compared to one that does not have this gene mutation. Not only is Lyme and Co infections very difficult and complex to treat, but now I have this gene mutation which makes it ten times more difficult to treat! My primary suggested I get a full genetics test done, just so she can see everything in a bigger picture and help heal my body. I should be getting the tests results in a few weeks here!!

Life has been one CRAZY roller coaster ride … physically, mentally, emotionally and spiritually! I’ve cried out to God in pain, in anger, in joy, in sadness, in hopelessness, in desperation and He continues to restore me every single time. Wow …. I am so humbled by His love!

If you all could please continue to pray for my health, my husband and this new doctor, It would mean the world to me!!! Thank you from the bottom of my heart!!!

*God is soooo good*

Blessings & Love,

Aisha

New LLMD

After a lot of praying (thank you for your prayers) and crying out to The Lord, I decided to switch doctors … AGAIN! This will be my fourth doctor. I am praying that she will be my last!!

At this point I feel it is best to take the natural route, because my gut is still healing, and I really don’t want to add antibiotics to the mix and ruin my gut even more. I’ve never tried any naturals, so I don’t know what to expect. I keep thinking, what if i’m too sick to use naturals and that I actually need something stronger, like antibiotics, or a port, and is it going to be a waste of money and time. The unknown scares me … a lot. I need to lay it all at His feet, because there is nothing more that I can do but trust Him.

He’s so got it all under control … and I need to remind myself of that.

I saw my primary doctor yesterday, she is so wonderful and Lyme friendly (meaning she does believe in chronic Lyme). I am beyond blessed for her. She thinks I have a gene mutation called MTHFR … this is very common with Lyme patients. You can read about it here. I have a low RBC folate (red blood count) along with other symptoms, which made her think I might have this. I will found out next week. In the meantime, she suggested to start taking some supplements to help with this, and she said she is very sure it will help me feel a lot better, especially with my mood.

I am hopeful.

I am worried about one thing. This new LLMD (Lyme Literate Medical Doctor) I am seeing next week is very new to all of this, however, she is ILADS trained, and that brings me a lot of comfort. If you could please continue to pray for me & my hubby, and for this new doctor that she will know what to do with this diseased gal, I would appreciate it so much!! 🙂

In the midst of this crazy, dark storm I am in right now, The Lord is still is so good. He’s always good. I am thankful for everything He does, but mostly for His abundant and everlasting love. He knows that’s what I need most right now.

“Be still, my child … I will shelter you under my wings in the midst of all storms. I will never leave you, nor forsake you”

Oh, He is so good.

Prayer Requests

This past month and a half has been very tough … physically, emotionally, mentally … all of it! I have been off antibiotics for a month and half now, because the last antibiotic I was on completely ruined my gut. So, I’ve been having gut issues on top of some of my old symptoms coming back because I am not in treatment right now.

Thankfully, I started a medication for my gut two days ago and it has helped tremendously. No pain, no cramps and hardly any nausea … so that’s good. The cramps were HORRIBLE! I don’t know what giving birth feels like, but if it’s anywhere near the cramps I had … then, I might pass on the whole giving birth part! Adoption sounds like a better idea!

Because of this whole gut issue, I had to do a very strict clean diet. I’ve been losing weight with this diet, and it’s been stressing me out because I can’t afford losing any more pounds because I am tiny as it is! I decided to go to the Co-op today and get a protein shake. Let me back track a bit and say that I have been feeling really crappy today .. weakness, kind of dizzy and my mood wasn’t the best. Back to my little story, my awesome, handy GPS gives me the wrong directions on my way there and I was pretty much going in circles, for like 20 minutes… I was very tempted to chuck my phone out the window.

At this point, I was feeling very overwhelmed.

Marc calls me while I was at the Co-op, and I almost started crying on the phone with him because I was stressed out with everything, and all of a sudden I felt like I couldn’t catch my breath … almost like I was suffocating (last time I felt like this, I had a panic attack). I kept trying to calm myself  by breathing, but at the same time I was rushing to get my stuff and get out of there! I get to the protein shake isle, and a sweet gal came up to me asking me if I needed help. I told her what I was looking for, so she grabbed a protein shake bottle and was explaining why it was good and yada yada … I was standing there and all of a sudden I felt very dizzy, lightheaded and my heart started pounding. I knew I was having a panic attack. I grabbed the protein shake out of her hand while she was talking, and I just pretty much walked away, fast, without saying anything (Sorry sweel girl at the Co-op). I get to the cashier and I was like speedy gonzales .. I’ve never put groceries on the counter so fast in my life!

I get to my car and I just sit and wait until it passes. I was dreading the 20 minute drive back home … but, I had no other way. Finally, after 45 min of deep breathing techniques along with prayers. I calmed down , said another prayer, and drove away!

This was the second panic attack I’ve had. The first one was two months ago … and I was driving!! I actually ended up calling 911 because I literally felt like I was dying!

Prior to my illness, I’ve never ever had a panic attack, never suffered from anxiety … nothing! The Co-infection Bartonella causes anxiety and panic attacks, and all my symptoms right now scream Bartonella. So, I need to get back on antibiotics, but I don’t know if my gut can handle oral medications right now. So, I’m not sure whether to take the natural route, or risk it and try orals again, or do a port. That’s why I am here asking you all for prayers please. Prayers for wisdom, guidance, knowledge, discernment and patience, for me, Marc and both of my doctors!!

It’s SOO tough, but I know The Lord will get us through this set back we are dealing with right now!

P.s: Don’t use a GPS on your phone anymore … apparently, they can trigger a panic attack :p

Blessings & love,

Aisha