A mess of emotions

Of late, I have been a mess of emotions. My breathing continues to be burdensome and after a brief improvement with a smaller tracheostomy tube, all my symptoms--severe shortness of breath, coughing spells, feeling as though I cannot breathe, etc.--have all come back. I am so tired from not sleeping. My shortness of breath and coughing spells continually wake me up and/or prevent me from sleeping. My rib muscles ache from frequent coughing spells; this pain too, prevents me from sleeping.

I am trying to remain optimistic. Perhaps all these symptoms are just from an allergic reaction from the silicone in my tracheostomy tube. There is another tracheostomy tube available which does not have silicone in it, which I tried this week. I had a severe allergic reaction to it and had to switch back to using my silicone tracheostomy tube. What if my body just does not like tracheostomy tubes? Where do I go from here? The ulcers in my trachea continue to cause much pain and swelling. Of late, the ulcers have started producing a foul smell. Will they ever heal?

I am patiently waiting for September. After nine months, I have finally been able to get in to see a mitochondrial disease specialist. I am unsure if she will be able to help my tracheostomy troubles. Do I wait and pray she will be able to help? Do I try to see another pulmonologist? The fear of being admitted to the hospital lingers in my mind. In three months, I have spent 28 days in the intensive care unit. My body is exhausted; my brain is on hyper-overdrive. The thought of having to endure another minute in an intensive care unit drives me nearly to tears. The thought of IVs, blood work and other testing makes me sick to my stomach. I just want to be able to breathe. I just want to be able to sleep. I am trying not to be upset that after struggling for so long, I continue to have so many breathing issues. I just keep praying, keep asking God for direction, keep asking God for relief from my symptoms. "Lord, I am tired. Send relief soon. Amen."