Q and A

If you have any questions, please send in a comment (mark it private if you don't want it publicly posted) and I will do my best to answer. This page will be updated as new questions are asked.

Q: I know a patient who runs marathons OR I know a patient who spends most of the time in the hospital and has been on life support... why are you so much better/worse?
A: You can't really compare one person with chronic illness to another. Myasthenia Gravis is called the snowflake disease because it affects every patient very differently. Furthermore, there is the rarity that someone will go into remission and be able to lead a "normal" life again. They can still say they have MG but in that circumstance MG isn't currently attacking them. Dysautonomia/POTS and Lyme are similar in that every patient is different and every day/moment is different.

Q: So does this mean you don't have any of those other things you were diagnosed with?
A: No, it doesn't. While MG, POTS and Lyme are what I speak about the most and my main diagnoses, it is not the entire story. Unfortunately, those with chronic illness often have several diagnoses because their body just isn't working right. With autoimmune, once you get one, it is commonly seen that you get more.

Q: Why have you been so negative OR How have you become so positive?
A: Well, anyone who has a chronic illness can probably tell you its full of ups and downs. You don't know what to expect day to day or even minute to minute. I am trying to be much more positive, but there have been and will continue to be days that I am down or I just need to be sad or cry. It happens. It happens to everyone and emotions are normal. In a way anyone with a chronic illness is experiencing a loss, a loss of oneself how they knew themselves, a loss of some ability and sometimes a loss of others in their life. The stages of grief are normal. At the same time I have developed a strong faith and relationship with God who gets me through each and every day.

Q: I know you don't want to hear "you look fine" but why do you look fine if you have this illness?
A: Sometimes I don't. Other times how I look definitely doesn't match how I feel, and by the time I would not look fine would probably be too late and I'd be on my way to the hospital. Remember Don't Judge a Book By It's Cover... it works in reverse too. Don't assume anything by how I look. My looks are the "healthy" part of me, so I thank God I still have a part that is healthy, but it can be very deceiving.

Q: Is there pain associated with it?
A: Short answer, yes. Long answer, with MG many doctors claim not, but many MG patients say yes. With Lyme, is there pain? Absolutely yes. I've never ran a marathon but sometimes it feels like I did... after walking downstairs or after taking a shower. Other times I feel like I was run over by a truck, no joke. One of the worst pains is when my neck muscles go weak. If I don't catch it soon enough and put on my neck brace it turn into a massive horrible headache in which all I can do is lay down until it passes. Joint pain, muscle pain, headaches/migranes, stomach pains/aches. Even when we smile, there is pain beneath it.

Q: What is the hardest part?
A: There have been a lot of hard parts. One that stands out is basically learning how to walk again. The emotions associated with that are hard. I felt like a toddler taking his/her first steps. It's crazy how your brain just won't connect with your body to make it move... and even when it does your muscles just don't want to work. I had to be taught how to step, how to position my body, and I had to have someone holding me by a guard belt while doing so. Both times in rehab I went from not at all walking to standing, to a few steps with a walker, to a few steps on the parallel bars, to a few steps with just the guard belt to finally walking with someone next to me but not holding on. That's a difficult thing to go through. Also, getting a pulmonary embolism as a complication from thymectomy, I thought my life was ending right there and running through my head was "did I do everything I could do in life?" not for myself but for others. But in general, I'd say the hardest part is having to/needing to depend on others. There are thing I just cannot do sometimes.. like opening a bottle, lifting something, going up the stairs, drying my hair, etc. I hate depending on other people, especially for those basic every day needs.

Q: But when I saw you, you were walking just fine?
A: That somewhat goes along with not telling me I look fine. I would use the analogy of myself being a telephone and rest or medicine being my charger... but I have a very very short battery life and keep needing to be recharged. I might walk just fine for a minute or a few but if you keep on watching if I'm too stubborn to take a break you will start noticing the "tipping" as I call it. Usually my core gives out first and it'll look like I'm falling but I've always caught myself, knock on wood. If I keep on pushing, which I really really shouldn't, then my leg muscles will start giving out and it will become extremely difficult with every step I take, like my legs are weighted down. The point is, I need to stop what I'm doing before it gets to that point, though sometimes it comes without warning or catches up with me later so sometimes you will see it happen.

Q: Is there a best time of day for you to do things?
A: Yes and No. Every day is different, I never know what to expect. But for the most part, mornings are bad for POTS and Lyme Usually mid afternoon is the best part of the day for me and that's typically when I'll plan appointments or get things done. By the end of the day I'm worn out, which is MG.

Q: You were diagnosed with MG in 2012 and POTS in 2013, and your doctor thinks you had it since 2010, but when did you actually get it?
A: I'll probably never have the answer to that. It could have started when we moved to San Antonio, it could have started with the pneumonia, it could have started with one of the many medications I was given while misdiagnosed, MG actually could have been in me since I was a kid but just mildly in my eyes until something else (such as pneumonia) set it off. The doctors asked me if I remember any of these symptoms as a kid or teen. Initially I said no I was really active, always playing sports. But they made me think harder. Well I always did have a problem with my left eye wandering out... you could only notice it if you really pay attention. Well, that could be a symptom. And one of my first symptoms upon moving to San Antonio was swallowing difficulty, that's a symptom. I've always had problems trying to swallow pills... could be a symptom. We'll never know, and I've decided I'm ok with that.

Q: How did you get it?
A: In regards to MG and POTS, I'll probably never have the answer to that either. Autoimmune diseases, neuro-muscular diseases, I guess they just happen. Some can be passed down through the family, but in my case there is nothing that we know of. Some can be brought on or brought out by medications, environment or illnesses including pneumonia. In regards to Lyme, I most likely got it back in college and it was dormant in my system until all these other problems came out. Then I was bit and got Lyme again in 2014 which made everything much worse. Rather than focus on how or why or when, I focus on pushing through it. This is my life as I know it now and I'll live it as fully as I can with what I'm given.

Q: Will it get worse or better?
A: It could, either one... but this is what I mean by that... most medical sites and even doctors will claim MG is not progressive, or that maybe it is for the first 2-7 years. If you speak to a large group of MG patients, as I have, most all of us will agree it IS progressive. It can go into remission but that doesn't happen very often. POTS can go away or go into remission, but again doesn't happen often. Lyme can also go into remission but usually takes years upon years of very hard treatment. What everyone needs to remember is we don't "get better" like we have the flu. The key is to remember this is a "chronic" illness not acute. It is long lasting, life lasting. We have "good" days/moments and bad days/moments. It still all comes down to treatment and what works and how well it works and how our body responds, as well as if there are other illnesses that complicate things. However, I'll never forget what my doctor told me when she first diagnosed me with MG, "Miracles do happen." Let's pray for that miracle.