It's a good day

What if every day was good?
What if every day IS good?
What if you started looking at it in that way?

I have been fundraising for the MG Walk, which was yesterday. I had every intention on going and walking as far as I could. Then yesterday I woke up feeling very sick and weak. My family still attended, but I could not. Was it a bad day? Was it a good day? What determines that?

If I looked at only that aspect, of course I'd say, it was a bad day. But that would actually be fairly narrow minded of me. I have to look at the whole picture. All in all, it was a good day. Every day is a good day, even when it's a bad health day.

I'm not only alive, but I'm living. Maybe it's not how I imagined and definitely not how my friends and family would desire, but I'm living as best as I can given my situations. Look at the beauty around us. Nature. People. Animals. Love. We don't have to have any big plans to experience any of that. And thanks to technology, I can lay in bed and connect with others. Most importantly I can always connect with God. It's a good day.

Furthermore, here is something great. I can't remember the last time I used the wheel chair. I think, perhaps, it was in June at the last MG walk- the local one. (Yesterday's was national). But even then, I accomplished something huge that day. I walked a mile, an entire mile! June 2014 was the first time I was able to walk a mile in at least 2 years. My situation today is so much worse than my situation used to be. However, how I am today- mentally/emotionally/spiritually is so much better than I used to be. It's a good day.

I have Myasthenia Gravis, POTS/Dysautonomia, Lyme Disease, Bartonella, Chronic EBV, Candida, Adrenal Fatigue, an immune deficiency, a blood clot disorder, scoliosis/back problems, gi problems and more. But....

I have a home, family, friends, food, clothing, an education, entertainment and most importantly God. And with God alone, I have it all. So... every day is a good day, because every day is a gift from God. Treat each day as a gift, as a blessing, see it with a positive attitude, give your life a positive outlook. We can't control some of the situations we are placed within, but we can control what we do with it. Make it a good day.

When I was 20 years old...

You can read the my story page to hear how it all started, or so we think/thought. There may be a missing part in there. That missing part was about 10 years ago, or about 5 years before I suspected it all started.

Back in college, I remember going to the doctor for a bullseye like rash, can't remember if I had any symptoms. I remember the doctor mentioning lyme, and I remember taking medicine. But then I got better, or so I thought, and carried on with life until fully getting sick and declining many years later.

This past Friday I saw an LLMD- a doctor specialized in lyme. The problem is these doctors are few and far between. The bigger problem is they don't take insurance. The politics and such behind treating lyme properly is ridiculous. So anyways, made a little trip to Indiana to go see this new doctor. He spent 2 hours with me- discussing my history, my current symptoms, examined me and then going over a treatment plan.

He has no doubt in his mind I have Lyme Disease, but there is more to it. He believes my lyme from college never was treated properly. So my past lyme kind of just hung out in my body for many years, until I got sick in 2010 and then I felt more symptoms of it, and now with this new case of lyme it hit me much harder. In addition to lyme, he strongly believes I have bartonella. That is another tick-born illness that often comes along with lyme.

So his plan is this: He is upping the dosage of the antibiotic I am currently on to the proper dosage. This treats the current lyme and half tackles the bartonella. He is also adding a second medication that will tackle the rest of the bartonella. In a few weeks, if I am handling these meds ok, he will be adding a third medication. The third medication will basically reopen the old case of lyme so that the first medication can try to rid it from my body. Lastly, the fourth medication is the other one I'm already on but he is increasing the dosage on that as well. He expects me to be on all of these through December.

In addition to the pharmaceutical side, there is a more alternative side, the side I of course prefer. Fortunately, I don't have to make many changes there because I'm doing just about everything he suggested in regards to what I eat, small amounts of exercise as I am able to, and supplements to ease this process and help my body recover.

I can't even remember what it's like to feel healthy. I have to now take 20 pills a day (7 prescription + 12 supplements + 1 OTC). 20! But my newest doctor thinks he can get me close to feeling healthy again, and for once I somewhat believe him. I will still have Myasthenia Gravis, that is a for sure separate diagnosis. I will still have many of the other diagnoses as well. But this doctor's thinking is that IF lyme was the absolute root cause/beginning and we successfully treat the lyme, everything else will most likely improve. That would be an absolute dream come true.

And so, prayers please- for successful treatment, my body, especially my liver, to tolerate all of these meds, no further complications or worsening of symptoms/not flaring my MG or POTS, and better health in the not so distant future.

In the mean time, I now get to promote awareness on yet another illness, make that two: lyme and bartonella. I officially dislike ticks.

A wonderful update

Thank you so much to everyone who has been praying for me. Lyme kicked me down so very hard. But with your prayers, and these antibiotics, I am doing much better right now and just had an enjoyable weekend. So here is an update for anyone following:

The antibiotics took about 3 days to start working, and then gradual improvement, but by this past Saturday after taking the antibiotics for about 8 days, I started feeling not only back to "my normal" but even slightly better!

In regards to the lyme only, I'm still somewhat stiff in my neck, shoulders and back and the pain still comes and goes but isn't nearly as intense. My temperature is still off but minus the chills, so that's pretty much back to "normal." Fatigue has extremely improved! So much to the point that I'm slightly shocked at what I was able to do these past few days.

Over the weekend, I not only went to a wedding but I wore heels- HEELS! And I danced! Anyone healthy will be like huh? Anyone with chronic illness will be like WHOA! Because yes, whoa it is. That's huge for me. And then the next couple days I was able to play bocci ball, basketball and hit golf balls. Whoa again. Now there was a lot of rest in there: bocci ball needed an intermission just to get through one game, basketball consisted of shooting maybe 5 shots and I only hit about 5 golf balls all of which were the little plastic ones to practice with. But regardless, I did it and that's more than I can normally do.

Today I'm feeling the effects of it and I'm resting. Also today I had to take the 2nd medication, which I have to take once a week. That is making my MG and POTS flare, as it did last week also. But I am so very thankful for this past weekend, so very thankful for the antibiotics and so very thankful for your prayers.

I'm against medication in general, but sometimes it is warranted. This was one of those cases and fortunately, I believe only because of prayer, I did not have any side effects from this one. Friday I will be seeing an LLMD- doctors who specialize in lyme treatment. He will most likely test for any co-infections of tick born illnesses and let me know if I'm on the right treatment plan. I'm doing this so we don't risk this lyme case turning chronic if it hasn't already. So if you will please pray about that I would appreciate it.

Ever since I first got sick in 2010, I've just wanted to be healthy again. But things like this lyme disease make me realize it can always get worse, which also opens my eyes to how much I truly am blessed with. With the decline due to lyme, I also experienced the feeling of improvement that came with it when the antibiotics kicked in. That was a great feeling. To feel you are getting through it. And each and every day we all are- maybe it's your health, maybe it's your job, maybe it's a family/marriage situation, maybe it's just life in general. But without the lows how would you be able to experience the highs? That's why we can't focus on the situation but the only One who can and will get us through it.

Praising God again for the good times and the bad. Praising God for taking my health situation and turning it into something greater. Praising God for the "simple" things in like like this blog which allows me to turn a passion into a purpose. Thanks for reading. God bless.

Praising God for my bad news

Quick summary for anyone not following every post-
Tuesday I had a bite like mark on my arm. This developed into a bullseye rash. Along with it came extreme stiffness, severe fatigue, muscle and joint pain and weakness, chills and headache... unlike my "normal" symptoms. Thursday I went to the doctor. I suspected lyme disease but my doctor claimed lyme never happens here, probably just an infection. He put me on 2 weeks antibiotics and ran some blood tests to check for lyme.

Note- lyme often will not show positive in a blood test even if you have it. If it does happen to show positive it almost always will not show for at least 4-6 weeks after infected.

2 weeks of antibiotics for lyme disease, especially with as severe as my symptoms were and progressing so quickly, would not nearly be enough. There is a huge problem of regular md's not being knowledgeable in lyme, refusing lyme as a possibility, not treating lyme properly. If you are interested in knowing more, watch this video. It's as long as a movie but it's worth it to learn more.

I very quickly dove into research on lyme and reaching out to the lyme community. I did this because of my history of medical problems and the treatment or lack there of that I received. I knew treatment for lyme had to be quick and aggressive. If it's not quick and aggressive, and even sometimes if it is, lyme can turn into a chronic disabling condition- even worse than MG or POTS.

I research everything because I can no longer trust doctors. I can no longer trust doctors because of going 2.5 years undiagnosed with MG and 3.5 years undiagnosed with POTS. During those years I was misdiagnosed more times than I could count, put on more inappropriate medications than I could count. Those medications caused additional problems, resulting in hospital stays and further decline. I research because I have to be my own advocate. No one else can feel what's going on inside my body. I've come to learn my body very well and I have to look after it the best I can. We're only given one.

So anyways, today I receive a call from the nurse saying my blood tests results are in. Now all this time this may sound crazy, but I have been praying to God if I do in fact have lyme disease please Lord give me a positive blood test so the doctor will properly treat me. Well, hallelujah Praise the Lord!! I have a positive blood test!!! How that is possible just two days after symptoms started, I have no idea other than the power of prayer. So my doctor is now changing my 2 week treatment to 6 weeks. Normally I would say I hate medication and want nothing to do with it, but this is something needing to be aggressively attacked to try to rid it from my body.

Still there are concerns. My doctor will not put me on more than 2 pills a day. 3-4 is recommended. He also still isn't knowledgeable in it. My doctor didn't test for any co-infections that ticks can also give you. Those can be just as serious as well as sometimes fatal. I should find an LLMD- lyme literate md- specialized in treating lyme properly, but they almost never take insurance. Again its back to politics and such in the medical industry. Watch that video. So do I take these 6 weeks and hope that's enough and that I have no co-infections? Or do I pay out of pocket, which could be a whole heck of a lot, to go see an LLMD and do more testing? I guess I'll keep praying about it.

The good news is the lyme community tells me I'm one of the "lucky" ones... I actually got a rash, noticed the rash, saw the doctor while I had the rash, the doctor acknowledged lyme as a possibility, my blood test came back positive. I was told those things rarely ever happen especially not all of them together. So Praise God!

This has kicked my butt pretty hard. This fatigue is absolutely horrible. And it has set off my MG and POTS in a bad flare. It's actually making me appreciate having "just" MG, POTS, etc. etc. etc. But now I get to add Lyme officially to that list. All these things try to take me down on a daily basis. Sometimes it's hard just to sit up. I feel so under attack. But I just continue to rebuke the devil in Jesus' name and commit my life to Christ. I know I probably wouldn't be in as deep of a relationship with God as I am now had I been healthy, so in that regard these illnesses are a gift. Praise God in ALL things, not just what we see as good things. So I'm praising God for my bad news, not only because it resulted in better treatment, but because God is always good. I just ask that He please help me through this and out of it so I may live a better quality of life while remaining close to Him.

Thanks for reading, thanks for learning, and thanks for considering a donation to the MG walk I will be doing later this month :)

God bless.

The challenge in having a chronic illness

So I now have suspected lyme disease. Very slim chance I don't considering the bullseye rash and my progressing symptoms and debilitating weakness. This weakness/fatigue is outrageous. I thought MG and POTS were bad. Goodness this is so much worse even. I very much hope it gets better the more meds I get in me to treat this. But I'm concerned because I'm not being treated properly. I'm not being treated properly because my doctor doesn't get it.

My doctor claimed there have been no cases of lyme in IL in the past 12 years. I've already talked to 4 people in the past 24 hours who have had lyme in IL. My doctor ran the blood test yesterday. Do any research and you will find that test is highly unlikely to come back positive, but I could still most definitely have lyme. My doctor claimed 2 weeks on this med would work. Do any research and find I need a higher dosage for at least 6 weeks to even have a chance of this not turning into chronic lyme disease.

Chronic lyme disease would mean this extreme fatigue doesn't go away for good. Fatigue as in I'm not sure if I can sit up from bed in the morning. Once I have enough energy and make it downstairs, I'm not sure if I can finish getting my simple breakfast. A few steps and I feel like I have the worst case of mono. The stiffness doesn't go away. The muscle weakness and pain doesn't go away. The joint pain and weakness doesn't go away. The chills and fever return again and again. The stomach like flu symptoms come back. It can turn worse. It can add additional more serious symptoms, neurological, vision impairment, heart trouble, etc. It can kill you.

I say this because I speak the truth, I always speak the truth. And I feel it is so incredibly important to do so and to get awareness out there. Where do you get your information from? The regular MD's? The media? Friends or family who are healthy for the most part or have a common/known about health condition? Please think outside the box.

The medical industry is big on treating cancer, treating heart disease, treating COPD, treating diabetes. The medical industry fails on successfully treating or even acknowledging syndromes or diseases that don't show up on tests, that have to do with the autoimmune system, that treatment doesn't succeed on, that there is no clear live or die. They think they know more and sometimes they do. But sometimes they really don't. We are the ones living this every second of every day. We are the ones focusing in one on or a few specific diseases/conditions, talking to others who have it, learning what our individual bodies respond to and don't respond to. They read what is in a medical book based off of testing on a small percentage of patients who have something. We live it.

We with some chronic illnesses fall into a hole. We fall deep into this hole that doctors don't care about for the most part. Other than the medical industry being a money making industry, I don't know the true reason why we aren't treated. But I do believe the majority of regular doctors don't fully understand or acknowledge chronic illness such as the ones I have. That is sooo very hard for us. It is so stressful. Stressful to have to be told it's just anxiety, stressful to be told it can't be this or that, stressful to be told its not a positive blood test so there is no way you have it, stressful to not be treated or treated properly, stressful to be dismissed, brushed off or dropped as a patient, stressful to be judged and harshly criticized, stressful for no one to believe you, and stressful to deal with being jailed inside your own body each and every day.

Family and friends please get behind us and support us if you haven't already. Please don't question what we are going through or argue us on it. Please don't believe a doctor or another friend but not believe us, especially if you haven't done the research. We have it hard enough. More than anything we need support.

Myasthenia Gravis is a real disabling disease.
POTS/dysautonomia is a real disabling condition.
Candida is a real disabling illness.
Chronic Epstein Barr Virus is a real disabling illness.
Adrenal Fatigue/Insufficiency is a real disabling condition.
Lyme Disease and/or Chronic Lyme Disease are real disabling diseases.

I have all of them. And then I have the stress of people not believing me. I'm doing everything I can to improve or maintain my quality of life, to spread awareness and to stay positive. So if you want to disagree, please first do the amount of extensive research I have done, take a test drive in my body, and then tell me your argument. But better yet, just believe me and provide the support I need. I really do need it. I need you. Thank you.

Side note, the MG Walk Fundraiser is this month. Please consider making a donation. Funds go towards helping MG patients such as myself, with better treatments, improving quality of life and searching for a cure. Your support is much appreciated by myself and everyone with MG!

God bless.

Another day, another diagnosis

Sometime in the past few weeks I felt something bite or sting me while at the park. I remember saying oww! but then carried on about my day. Not sure if that is related. I've also been spending a lot of time outside in general and seem to attract every sort of bug, bee, animal out there. Not sure if that is related either.

The beginning of last week I started feeling kind of odd. I didn't connect this with anything I just mentioned above. Instead I thought most likely it's my "normal" conditions just flaring in a different way. Still not sure if its related.

But now into the real story, this Tuesday I woke up scratching my left arm because it was itching. I looked and noticed a red welt like mark. At first I thought maybe I got a spider bite, maybe a mosquito, no big deal. But then it started to look a little like a bullseye, classic sign of Lyme Disease, so I called and mentioned it to my doctor. He asked if I had any other symptoms and I said not anything different than usual, so he said wait it out til Friday and see if it goes away.

Yesterday, Wednesday, this turned into a definite bullseye and seemed to be growing. More conerning was what I thought was just a stiff neck Tuesday turned into all body stiffness, muscle and/or joint aches and pains and tightness. Then I got the chills so I took my temperature and had a fever. Called my doctor again and they made me an appointment.

Today I go to the doctor bringing in my pictures that I've been taking to show the changes of this thing on my arm. As soon as my doctor saw the bullseye, he said that's reason enough to have to treat you for Lyme Disease. He said I have a definite infection spreading in my body but he doesn't know for sure if it's Lyme or something else. He's starting me on antibiotics as well as an anti-fungal because of candida. He also ran some blood tests and depending on how they come back may change the treatment, and then wants me back in 6 weeks to check on me and run more blood tests.

Here are my concerns and what I'm going to ask you all to please pray about:
- Lyme Disease treatment, especially when its already through your system, is at least 6 weeks of 300mg of the antibiotic. He only put me on 2 weeks of 200 mg. Most doctors don't know how to properly treat Lyme.
- Antibiotics have landed me in the hospital before. Many medications have the potential of making MG and POTS worse. This is on the "be cautious with" list. "Be cautious with" is the lighter way of saying- hey if you take this there is the risk that you will end up on a ventilator; choose wisely.
- What this infection, whatever it is, will do to me. I'm already very stiff, weak and in pain. More importantly, the fact that we don't know for sure what the infection is. Lyme is diagnosed mostly based on symptoms because blood tests are often incorrect. Any infection, with or without treatment, typically makes MG and POTS flare up badly.
- If Lyme isn't treated properly from the very beginning, and sometimes even if it is, it has the potential of becoming chronic. That would add yet another chronic illness to my list.

Fortunately, most of what I just mentioned falls under "potential". So there is also the potential none of that bad stuff will happen to me. Prayer is powerful, and I ask that you all please pray that this medication does not negatively affect me, that the rest of my illnesses stay under control with no hospital stay, and that this medication kicks this infection out of my body. Furthermore, if it is God's will, that He heal me- completely heal me! Make me able to live a normal life again. Thank you for your support and prayers!

And I can't sign off without throwing in a plug here... the MG Walk Fundraiser is this month. Please consider making a donation. Funds go towards helping MG patients such as myself, better treatments, improving quality of life and searching for a cure. Your support is much appreciated by myself and everyone with MG!

God bless!