This is one of the harder posts to write (not that I have posted many, but I have written several that I never posted, and written an extraordinary amount about bone infections in my personal journal) about being ill.
There is a man I know, who like myself, has chronic osteomyelitis. We communicate on an online forum with several others who are also struggling with bone infections, along with many others who have been through and/or are still dealing with broken legs, etc. He has had chronic osteomyelitis for a very long time - about four years. It is not as long as I have had it but he has definitely been through much more in the medical, health care department. Earlier this month he posted about the plan his many doctors and specialists have created for him, one that will involve several surgeries, months of bed rest, rehab, and at least 1 to 1 1/2 years of his life. If I understand correctly, this plan is the last attempt to save this mans leg. Limb salvage is the last step before amputation. My heart goes out to this fifty-some-ought- aged man. I know the physical pain and mental worry he knows all to well.
When you are ill it is easiest to put on your best "Let's fight through this" face for the world. It helps other people feel less awkward about not knowing how to act, and more importantly, it helps people who are sick themselves fight through everything. Yes, when ill I find it easiest to pretend that nothing is actually wrong with me, and to let the doctors do their things just to give them the satisfaction of doing something. Yet at the end of the day, exhausted, fed up with the chills and the headaches, desiring the night's rest but dreading the bone pain which seems so much worse as a pray for sleep to overcome my rampant mind, I can not help but think that I am indeed ill. I have to admit that even though bone infections are only called "infections", they become diseases once they reach the chronic stage. They become things that need to be fought hard against, and that do not become better with a weeks worths of pills.
So when this man posts about his journey, and the turbulence that awaits him in the not so distant future I can not help but wonder how did I get so lucky? Why have I had so few medical procedures while he has had so many? Why might he loose his leg while for my vantage point, mine will remain firmly attached to by body for ever and always? I am finding my self looking on the bright side. I am happy that I ma not him.
On the other side of my thoughts is a little voice screaming "the worst is yet to come for you." My ID specialist and OS argue about whether or not to remove the sequestrum in my right tibia. The former feels that the dead bone is so large that it will not dissolve on its own. Without its removal, the infection will never be vanquished form my body. The latter, the OS feels that surgery is to dangerous. Exposing the infection to air will spur it on, make it much worse. If that happens, I would have many, many more surgeries. There is always the fear that the antibiotics are not working. There has been only minimal healing visible on my last two MRIs. There is a chance that things will not get better. In a previous post, I wrote that I would be okay with maintaining things the way that they are right now for the rest of my life if things could not get better, but today I am so done with this all.
This is one of the harder posts to write because I have to address my worries about the uncertainty that spans ahead of all the people I know with (chronic) osteomyelitis, including my self. One of the women I know has been on antibiotics for a year, and will have her hardware removed next month. She will soon know if the her infection is gone. The man I mentioned earlier has no certainty anymore. He is in medically uncharted waters. I am uncertain, I am worried. I am afraid. And having to acknowledge that is one of the hardest things that I have ever had to do.
Where every you are, to the man and woman I posted about, I a thinking about you.You may never read this post, but I am so glad that we can support one another. I am not a religious person, but I am praying to whatever being there is that you will be protected. I am praying that we will awaken from this disaster, form the Uncertainty.
