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Shelly Poe

@shellypoephoto

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Mom, wife, friend, Seronegative Myasthenia Gravis and Ehlers Danlos warrior. Photographer, artist.

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The Goozles that were no more. 😢

Rest in Peace Uncle Victor. You will be missed.

Thank you for your kind ear and words over the years. by @shellypoephoto

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9 days ago

Medical Monday… but a Tuesday.

In this effort to not sugar coat any of this anymore…. The past week has been the worst week (health wise) that I have had in a long time. I am now almost a month off of Mestinon and IVIG and all that has happened is that I have gone down hill. Again I don’t say any of this as a “pity me”, I am stating this as in a “this is just what life is right now” until I can see the next specialist… in June…

The falling has gotten really bad, weakness in my arms is so intense. I ping pong between just not wanting to eat and eating but nothing staying down. I have been sleeping roughly 12 hours a night and feeling like I can barely stay awake from the moment I wake up until the moment I go to sleep. I have started having limb locking more often (which hurts so bad afterwards.) swallowing and speaking takes a lot of effort and despite the emgality and ubrelvy, migraines have been a daily issue. Needless to say… life hasn’t been sunshine and rainbows, though I do try my hardest not to show the worst to anyone.

So what do we do now? Things Justin and I have talked about… expanding to a few more specialists or trying the Mayo Clinic again now knowing that SNMG apparently isn’t the problem. The problem in this is the kids fall schedules and working through timing. We will keep everyone updated as we can. In the meantime rest and research is what’s on deck. by @shellypoephoto

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9 days ago

What an epic Big Little reveal at @danceindustry tonight. Riley got so lucky in having two incredible littles for this season. These relationships will just grow into more love and friendship and fun as the season goes on and further.

Thank you littles for such sweet words and gifts for Riley and thank you @danceindustry and specially @_nicolerubin_ @mandicoursey @jessiex2005 @bronahudson and so many others for making all of this magic happen. taken in Dance Industry Performing Arts Center by @shellypoephoto

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12 days ago

Following my mom’s advice from a few months ago and showing the not so great side of all of this…. The non- fake it til I make it moments. The moments that just do me in.

Today I ate food, specifically homemade gluten free chicken noodle soup and another dish we refer to as Sasta pasta (gluten free pasta, Italian sausage, garlic, spinach and parm). My digestive system said no thank you to these meals. As much as I hate vomiting that isn’t even the issue. The issue is that Justin is home tonight and as much as I want to sleep with him in our bed, the reality is that he and cooper have a super long day tomorrow so I’m going to hang in there living room and half bath tonight. Little joys like sleeping in the same bed as my husband when he’s home are running about 50/50 these days because I don’t want to keep him up with puking sounds. He’s wonderful and he understands but when my condition leaves me left out of alot of things you really look forward to any moments you can spend with your loved ones… even if you are both asleep.

This vomiting is not contagious and it is by no means a new symptom but I am getting tired of it none the less.

This. This is the non-glamorous side of my sickness. This is the part I can’t fake it til I make it over. This is one of the parts that just deplete me physically and emotionally and I am so over it. taken in McKinney, Texas by @shellypoephoto

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13 days ago

Medical Monday on a Friday:

Anger. Absolute, disgusted Anger. A woman recently wrote an article in The Telegraph claiming that sick and disabled is the new cool. Now obviously I am well aware that respectfully this woman has absolutely no clue what she is actually speaking of and that this is an obvious opinion piece by her but it still angers me because it is spreading a false narrative.

Personally speaking, the level of fake it til I make it that I do infront of my kids and people in public because it would make them uncomfortable seeing what life really looks like in this body. I’m not complaining that I have to do fake it til I make it, that’s the people pleaser in me but what I am furious about is someone claiming that living like this is the new cool thing.

Sick beyond control, loss of strength in my legs that lead to falling in target last week and making my head bleed, the pain in my muscles and bones from just doing things like showering or making coffee. Trying to prove to myself that maybe I’m not really sick so I push myself and that leads to falls and incredibly weak episodes. Days where swallowing and speaking are harder than you can imagine and having episodes of losing my vision to extreme blurriness that cause even more falls. I am trying to figure out what’s cool about this.

Disabled and chronically ill people already spend their lives proving that they are sick or disabled. Articles like this just push the narrative even further that there is glamour behind the hurt and pain….. absolutely disgusting…. by @shellypoephoto

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14 days ago

Proof of life post. taken in Historic Downtown McKinney by @shellypoephoto

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14 days ago

Happy National Son Day to the one who keeps us on our toes in every way imaginable. We love you so big Cooper and are so proud of you every single day!!! by @shellypoephoto

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17 days ago

Catching the end of national daughter day and had include this sweet girl of ours that makes us so proud every day. 🥰 taken in McKinney, Texas by @shellypoephoto

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20 days ago

Medical Monday…. On a Monday… three weeks late because the medical disaster has been more than we have been letting on. After a negative EMG (on my face and neck 😱) and a negative LRP4…. It has been confirmed that I do not have Myasthenia Gravis and that that was ANOTHER misdiagnosis. We are now moving on to what is seriously diagnosis number 20 that I honestly also think is a misdiagnosis. The thought now is that I have something called FND (Functional Neurological Disorder) it’s kind of like that last ditch of we don’t know what’s wrong but something is wrong. The theory behind FND is that it’s not a “hardware” issue… it’s a “software” issue meaning that my brain and my body don’t communicate so the weakness, tremors, neuropathy, speech and swallowing issues are all related to a disconnect if you will. The problem with FND is that alot of old school doctors don’t think it’s a real disease so many FND patients spend their time finding doctors who believe it’s a real thing. Luckily UTSW is a facility that does believe it’s a real thing. FND is caused by a physical issues, such as illness or injury, for us we are thinking my EDS as those are common comorbidities. It can also be caused by trauma in your life and your body essentially saying, “I’ve had enough” and “disconnecting” as a protection mode. So the reality is that I have had ALOT of trauma in my life (I’m rather open about most of it) so that in addition to my EDS may be to blame. The issue is that the longer you have had trauma or illness, the harder it is to “get better”… I have 45 years of EDS and trauma so this will take a while if it even helps at all. An attempt to get better looks like PT, OT, speech and swallowing therapy, cognitive therapy and psychology, but even with those there is a chance of not getting better at all. 🫤 Justin and I aren’t thrilled with this diagnosis because I was responding well to Mestinon as well as IVIG when we thought it was MG so we are trying to figure out why that is. Also we feel like it’s a little bit of a cop out. It feels like there are no other answers so it is what it is at the moment. We will update as we can. by @shellypoephoto

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24 days ago

When your family is out of town so it’s up to you to do all of the gameday traditions. taken in McKinney, Texas by @shellypoephoto

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a month ago

Medical Monday…. On a Thursday…. Because today was neuromuscular at UTSW. *** before you read ahead, I’m ok, when I say I can’t do this anymore in this post I just mean that I am medically worn out. *** Ok so I will start with that I like Dr Khan. She is very nice… however today’s appointment didn’t go how I thought. She is now second guessing if Mysthenia Gravis is the correct diagnosis….. on one hand, she wants to confirm… we did additional labs today AND I have a single fiber EMG scheduled on October 8th. The way they do the single fiber is with this machine that has a needle that sends an electric shock through the muscles to stimulate them and then the way the muscles react is recorded. If this is what we have to do to confirm or not confirm then fine…. However… this will be my 4th EMG in a year (first two were upper and lower done separately…. Third was upper and lower done together….. this one is in my forehead y’all… 😱) so I’m not exactly pumped as I know this isnt a pleasant test. Where I am struggling and I can’t do it anymore is that I have had every diagnosis and misdiagnosis thrown at me. I joke that I am radio active and honestly I am a waling pin cushion. If there is a test I have had it done. The only thing everyone can agree on is that something isn’t right. I shouldn’t be falling, I shouldn’t be so sick, I shouldn’t have issues breathing and swallowing and doing daily things. Something is wrong and we thought that we were done looking for answers but today that turned into Maybe not. I am physically, mentally and medically exhausted. I just want a break but when it feels like that break is finally here, something changes. I am not saying any of this to sound ungrateful… I am simply just worn out. taken in McKinney, Texas by @shellypoephoto

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2 months ago

Life recently…. Medical update coming later. Just trying to take in today’s appointment 🤦🏻‍♀️…. (Nothing horrible but with a huge hint: the hunt still continues. 😕 taken in McKinney, Texas by @shellypoephoto

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2 months ago