Cake walk

I want to address something that has been brought to my attention, that it "must be nice" to not have to work/have so much time/do this, that, whatever. Cake walk is how I will define it... clickbait guilty. But this is important to read.

My simple response: "It must be nice to BE able to work a full time job, have an income and completely support yourself."

My extended response:

It's far from nice...
- to feel pain every single day... sometimes joints, sometimes muscles, sometimes eyes, sometimes head, sometimes stomach, etc.
- to have fluctuating weakness and never know when it will come on or how hard it will hit.
- to start sweating for no reason causing you to almost pass out.
- to have brain fog and short term memory issues.
- to have to have someone else go to the store for you because you can't stand in line.
- to have to miss out on anything that is outdoors in summer because heat makes you rapidly decline.
- to have to skip birthday parties and other outings because someone is sick and you have a compromised immune system.
- to have to avoid certain places or leave because the air isn't circulating at the right temperature and it makes it so difficult to breathe.
- to have a little cold turn into a hospital stay.
- to lose weight as well as gain weight without trying or changing anything.
- to feel nausea more days than not.
- to have to avoid gluten, dairy, sugar, soy, caffeine, processed/gmo foods as you watch everyone around you chow down on pizza and donuts.
- to need someone to push you in a wheel chair if the distance is too long.
- to go from being a cross country runner to not even being able to walk a mile, and it having nothing to do with being out of shape.
- to NEED, not want, help with cooking, cleaning, laundry, changing the bed sheets, driving, etc.
- to have to plan out your week, even your day, in order to conserve enough energy to do the things that mean the most such as church and doctor's appointments.
- to have a disease that is so controversial people accuse you of being a hypochondriac or having "just anxiety."
- to therefore have to pay entirely out of pocket to see a doctor who can properly treat you.
- to have another disease that is so rare most people have no idea how to treat it and you actually fear going to the hospital.
- to have 30 bottles of medications, vitamins and supplements and plan your meals according to how many pills you have to take with or without food.
- to NOT be ABLE to work when you pray every day that God makes you again able.
- to not have an income, or live off disability which isn't even enough to get a tiny apartment.
- all the while, to "look fine" and have no one any clue of all those things you are going through.

What I don't understand is this: Do people expect those with a chronic illness to be a hermit? The reason I cannot live a normal life in addition to everything above is because it is SO unpredictable. One minute I'm fine, the next I have no energy. One minute I'm fine, the next my blood pressure drops and I'm about to pass out. One minute I'm fine, the next I have a throbbing headache and can't think straight. I have to rest more often than do any sort of activity. Resting every part of me- physically and mentally. That is the only way I'm actually able to do anything else. Rest an entire day, go out for a couple hours, rest another entire day, go out for a couple hours. "Going out" isn't always fun, typically it's not. It's necessities. Fun is few and far between but as soon as we do so we get ridiculed, judged, attacked and accused that "it must be nice" or that we aren't really sick otherwise we wouldn't be out. Well, you are seeing us for that short time frame, not the rest of our lives when we prepared for this brief moment before and after by resting. Please don't judge. Instead we really need support.

With that said, I'd like to bring up two things.

May is Lyme Disease Awareness Month. I have failed to do much for this even though I intended to. So, to close out this month I would like to invite you all to watch this video. It was actually created by a 14 year old but is so clear to the point to explain what Lyme is and the controversy behind it. Lyme is actually quite common, in every state, and it can take lives. Please do yourself a favor and watch this. It could save your life. Video

The reason I failed to focus on Lyme Disease Awareness Month is because June is Myasthenia Gravis Awareness Month. And with that comes the MG Walk at the beginning of June. Thus, I have been focusing on fundraising for the walk. Please, if you have not already, go here, click on fundraisers, then my name and consider a donation of any amount. Or you may donate on the link posted on my Facebook page. We need awareness so this judgement stops happening, support to those who struggle through it, and better treatment options with the hopes of a cure.

Thank you for taking the time to read this and educate yourself. I hope that those who accuse the sick of having it "nice" or easy, never get inflicted with such a horrible struggle themselves. Thank you to those who support without judgement or ridicule. You mean so much to us.

Physical or Mental Health?

I haven't written in a long while so I thought I'd get back to it by giving an update. Here's what happened:

There is a medication called LDN. The regular form of this medication is actually used to help drug addicts. However, LDN is used off label to help those with chronic health problems. It is found to help regulate your immune system so your body can fight harder on it's own.

The thing about this medication is it is somewhat difficult to find the right dose. Because I am extremely sensitive to medications, we started very low dose.

It has to be made by a compounding pharmacy so I got my dose from a local pharmacy and started it. Everything was fine, but it also wasn't really helping. It wasn't doing anything.

My doctor said most people get this medication from one specific pharmacy in another state that mails the orders, because that pharmacist is the expert on this off label usage. I decided to transfer pharmacies. I began a new bottle from a new pharmacy at the same dose. But now things got out of control.

This medication is not supposed to have many side effects or serious ones, but you know I'm always the exception to the rule. Emotionally I was all over the place. Crying for no reason or every reason, depression, anxiety, anger, agitation... It was horrible. I did not feel myself and worse than that I could not feel God's presence. I felt like something had taken over me, taken over my brain and changed me, for the worse, much worse. But... physically... I was doing so much better! My physical symptoms improved before I even realized it.

I called and talked to my doctor and pharmacists from both pharmacies. What seemed to happen was that though I thought I was staying at the same dose, I may have actually increased the dose due to differences in the way the pharmacies make the medication. I was advised to decrease the dose, so I did.

Finally, mentally and emotionally I am in a much better place. However, my physical symptoms are much worse again.

So what it seems like is I can either take the medication at a high enough dose to help me physically but then get thrown off mentally and emotionally OR take the medication low dose or not at all to remain stable mentally and emotionally but decline physically.

So what is more important- physical health or mental health?

Of course I want both, but if I have to choose I think I choose mental health. I've been used to the physical symptoms for over 5 years now, but mental and emotional stuff not so much. Feeling like you aren't yourself is even worse than feeling physically sick all the time, especially if you can't feel God's presence. I'm not giving up on the medication just yet but I'm also not going to jeopardize who I am in order to physically do more.

Maybe God wants me right where I am for a reason I don't yet know, and sometimes I think I should stop fighting it and just accept it. Once again, losing something else (mental health) if even temporarily, makes you realize what you had. I had, and again have, the ability to use this brain I was given, the ability to write, the ability to reach out to others if even only though the internet. God has given me these abilities and He can at any point take them away. So rather than asking for more more more- physical health, I will say thank you Lord for blessing me with emotional and mental health. Thank you Lord for using me however You please to advance Your kingdom, whether it's physically out in the world or right here laying in my bed. Thank You Jesus for my many blessings. Amen.

New Blog Update

Hi everyone! Thank you for following me over to my new blog address. I just wanted to share a little update with all my readers.

2.5 years ago I started my blog as Fight MG. My purpose was to have one place all family and friends could go to stay updated while I was in the hospital, because I would be too weak to write or talk to every person. My surgery turned into complications and additional diagnoses and thus MG was no longer the only thing I fought. Therefore, I came up with a new name, Chronically Cheerful, as through it all I tried to keep a smile on my face. This eventually started to bother me though, because truly I don't always have a smile on my face. It's hard, very hard.

For some time, I've been trying to come up with a new blog name. I wanted something that would tie everything in. Though I occasionally still write updates, that's no longer my main focus. My main focus consists of two things: awareness of chronic illness and my God who gets me through it. I've been thinking about this for months. Finally it hit me.

About Me, Not About Me.

You see, the story I write is about me. But truly, it's not really about me. It is about God who I serve, God who gets me through it. The only reason I have a story to write is because He gave me one. I write for Him. I write to lead others to Him. The other day I wrote this:

"I just realized something. The more difficult situations I've been through means the larger my audience to potentially lead to Christ. Job loss, MG, POTS, Lyme, pulmonary embolism, moving back in with parents in your adult years, divorce. Those may all have been struggles laid on me, but they are also amazing opportunities... to reach and relate to all those different groups of people. The more obstacles, the more opportunity!

I wasn't placed on this earth to lead an easy and self focused life. I was placed here for Him... to be His hands and feet and lead others to the cross. So I will pick up my own cross and carry it, knowing it's all for Jesus."

And so we have my new blog name. With nearly 25 thousand views, I am both blessed and honored to still be writing. Perhaps one day I will write that book, but for now this is what I feel God leading me to do. 

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. 2 Corinthians 12:9-11

In closing I would like to ask you all a favor. Though MG is no longer the only thing I battle, I still battle MG. I will be participating in the walk this year which serves as a fundraiser. The foundation uses the money raised for research, support, awareness and hopefully one day finding a cure. Please consider making a donation of any amount as every bit helps. If you know me personally, please go to this website and find my name under the list of fundraisers. Or if you are friends with me on facebook, go to my page and click on the direct link to my fundraising page. 

Thank you so much for your continued support and prayers. God bless you!