How I Live with Myasthenia Gravis: How I maintain my Fashion Sense with a Tracheostomy

THERE IS AN ANSWER FOR EVERYTHING

As I Continue to find my place in my new word. I tend to need to find projects that make me feel useful. This is after spending a major part of my life as a care giver. But I also had a creative nature.statement. "Necessity is the mother of invention" while having to work myself out of my tracheotomy. I be came very creative with disguising the site. What has always been very therapeutic for me. Has been remember to remain myself. And what has always been something I loved is Fashion. And my expression of it. So although I could have one of the most unflattering things. A hole in my throat with a piece of plastic. That need to be changed daily. Because of the saliva and mucus that could seep out. Have I made you sick yet? I too had my preconceived notions of what some one looked like with a trach. And how people stared in pity or disgust. That was one of the things I had to overcome. Ironically, as a new nurse I was deathly frightened of tracheotomy. And I made it my mission to avoid them at all cost.
Until the nursing home... No one told me that there was a huge chance I would with a trach. I had a very good friend at work. A seasoned vet in Nursing home work. As I said before my career up until then was free of trachs. She held my had and walk me back through trach care. With the patience of a Saint I tell ya! And not to mention the great patient I had as well. He seemed compassionate toward me and my fear. I actually could not have had a better first. Although he could not talk his eye told me. He even shared a bit of his sense of humor with me. The thing about trach for me was the gagging. During the process of deep suctioning this was always possibility. That is what frightened me the most. Well, my patient listened during the conversations with my nurse friend. As I explained to her what bothered me about trachs. On a particular assignment I with all strength I could muster performed trach care alone. My Patient on the other hand saw an opportunity to traumatize me. While deep suctioning my way. He began to gag uncontrollably. Which of course sent me into a nervous fit. I began to run for help. And he began to silently laugh and wave his hands in the air. In a motion of surrender.


In this picture I still had my tracheotomy. But I was able now to breathe unassisted. Although it is not covered as of yet. I had already accessorized my self in preparation for a Doctors appointment. -----------------------------------------------------------------------------------------------------------------------------------------------------------------


Hear I still had the trach. But I am able to cap it

My son drove me to church capped.


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_ I was so excited with regaining some of the normalcy in my Life. That trach cared no more weight with me. I simply worked around it The day came when the trach was finally pulled out. The plan was for me the hole to close on it's on. So Now I had to clean the stoma. Which is worst you ask me? The trach or the stoma. Hard to tell, they are both so un natural. So now I had to accessorize a stoma.

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Here I am out celebrating the trach removal. Out with my former Home Health Nurse And one of my Older daughter. We were able to secure seats at a very exclusive restaurant downtown. And as luck would have it. The city was entertaining Restaurant Week. And we were able to eat a 4 course meal for a very reasonable price.

One thing I discovered My sense of taste was altered during this journey. Although we sat in this great restaurant. With an excellent menu for the bonus price we paid. I just could appreciate the multitude of flavors presented before me. But the company was great. And being out of the house period was great. It definitely was a reason to celebrate. And it definitely will go down as a Major milestone in my recovery. Until you have got a plastic tube inserted into your neck. I can't possibly provide you with any scenarios to compare. But Happy we all can share in that.
It would appear my Jewelry making would once again come to my rescue. So then I had to create neck accessories to distract from the bandage. And also look cute and appropriate. But as blessed as I am. Who could have predicted that chokers were coming back in style. Right at the most opportune time. So I created chokers just for me.

Because the stoma was not closing like we had hoped. I spent a lot of time coming with ideas. You know I had to match what I was wearing. Wearing my Vintage Pittsburgh Steelers Jersey. And you did notice the matching Steelers Head Band. One more really special item. Is the hand made wig made just for me. By my friend Sharlene. Looking cute was important to my self esteem. Especially with an new problem hiding in then shadows.

After a follow up examination with my ENT. It was officially noted That My stoma was not closing on it's own. And I would need to have it surgically closed. So now I was looking at surgery. But as a person with Myasthenia Gravis. We always have be aware of anesthesia. There are several in the "Black Box." These hold a list of medications that may and could worsen Our condition. So I spoke with my Pulmonologist and Neurologist about pending procedure. They both faxed over office notes to The ENT. I meet with the Anesthesiologist about my concerns. They did some research on what I tolerated for prior procedures.

Here I am with the Bandage from the surgery. And a big smile. I did ask the ENT if he could tighten up my neck skin a bit. I actually lost weight around the trach opening. But he said he would try.............