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.
Showing posts with label illness. Show all posts
Showing posts with label illness. Show all posts
Sunday, January 22, 2012
Saturday, December 31, 2011
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Chronic Osteomyelitis (chronic bone infection in my right tibia)
2. I was diagnosed with it in the year: 2011
3. But I had symptoms since: 2006
4. The biggest adjustment I’ve had to make is: not being able to go on long walks anymore, and realizing that I simply do not have the energy to do all the things I used to do.
5. Most people assume: that because I am recieivng treatment I will get better very quickly.
6. The hardest part about mornings are: waking up when I am exhausted, even after 10 hours of sleep.
7. My favorite medical TV show is: ER
8. A gadget I couldn’t live without is: my MP3 player. When I am to tierd or in to much pain to do anything I can still lay on my bed and listen to music/the radio - Yay! for staying connected to society.
9. The hardest part about nights are: bone pain
10. Each day I take 10 pills & vitamins
11. Regarding alternative treatments I: am currently doing nothing but considering yoga.
12. If I had to choose between an invisible illness or visible I would choose: a visible illness.
13. Regarding working and career: It is difficult to get through university because I am always exhausted. Luckily many of my professors are very accommodating and I still get very high grades. I cannot work at the moment because I am so tired and cannot stand for long periods of time.
14. People would be surprised to know: that there is dead bone inside my right leg.
15. The hardest thing to accept about my new reality has been: how something so serious could have been misdiagnosed for over five years. Also, on the inside I am still the same person even if I cannot do the things i used to do.
16. Something I never thought I could do with my illness that I did was: be happy and confident even while facing uncertainty for my health/treatment. Don't get me wrong though, I still have many down days.
17. The commercials about my illness: there are none.
18. Something I really miss doing since I was diagnosed is: walking to the beach by the lake I live near.
19. It was really hard to have to give up: Army Cadets
20. A new hobby I have taken up since my diagnosis is: embroidery.
21. If I could have one day of feeling normal again I would: go to the zoo where I would walk around all day and not feel pain.
22. My illness has taught me: to take life one day at a time. With a chronic infection it is all to easy to get bogged down with worry when thinking about the long term. This is something I am still learning.
23. Want to know a secret? One thing people say that gets under my skin is: "I have a cold and feel terrible. I don't think I could feel worse. By the way, how are you feeling?" and "You are ill? but you look so good!"
24. But I love it when people: modify some of their activities so I can still partake.
25. My favorite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I’d like to tell them: that is will be heard, it will hurt, there will be worry and despair, but there will be good moments within the bad which although not worth the disease are still wonderful to experience.
27. Something that has surprised me about living with an illness is: that the days which used to be my bad days before I got sick, i.e, days with a cold or the flu, are now my good days and I embrace them.
28. The nicest thing someone did for me when I wasn’t feeling well was: to make me a big cup of tea and get me a magazine from the bookstore.
29. I’m involved with Invisible Illness Week because: there are many people who struggle with everyday tasks. I think that people need to learn that life is not about doing extraordinary things and failing if they do not achieve there goals, but about enjoying and savoring what you can do. Accept who you are and what you can do withing your limitations because pushing yourself to hard, mentally and physically, can make you unhappy.
30. The fact that you read this list makes me feel: that people recognize hos serious chronic osteomyelitis is.
2. I was diagnosed with it in the year: 2011
3. But I had symptoms since: 2006
4. The biggest adjustment I’ve had to make is: not being able to go on long walks anymore, and realizing that I simply do not have the energy to do all the things I used to do.
5. Most people assume: that because I am recieivng treatment I will get better very quickly.
6. The hardest part about mornings are: waking up when I am exhausted, even after 10 hours of sleep.
7. My favorite medical TV show is: ER
8. A gadget I couldn’t live without is: my MP3 player. When I am to tierd or in to much pain to do anything I can still lay on my bed and listen to music/the radio - Yay! for staying connected to society.
9. The hardest part about nights are: bone pain
10. Each day I take 10 pills & vitamins
11. Regarding alternative treatments I: am currently doing nothing but considering yoga.
12. If I had to choose between an invisible illness or visible I would choose: a visible illness.
13. Regarding working and career: It is difficult to get through university because I am always exhausted. Luckily many of my professors are very accommodating and I still get very high grades. I cannot work at the moment because I am so tired and cannot stand for long periods of time.
14. People would be surprised to know: that there is dead bone inside my right leg.
15. The hardest thing to accept about my new reality has been: how something so serious could have been misdiagnosed for over five years. Also, on the inside I am still the same person even if I cannot do the things i used to do.
16. Something I never thought I could do with my illness that I did was: be happy and confident even while facing uncertainty for my health/treatment. Don't get me wrong though, I still have many down days.
17. The commercials about my illness: there are none.
18. Something I really miss doing since I was diagnosed is: walking to the beach by the lake I live near.
19. It was really hard to have to give up: Army Cadets
20. A new hobby I have taken up since my diagnosis is: embroidery.
21. If I could have one day of feeling normal again I would: go to the zoo where I would walk around all day and not feel pain.
22. My illness has taught me: to take life one day at a time. With a chronic infection it is all to easy to get bogged down with worry when thinking about the long term. This is something I am still learning.
23. Want to know a secret? One thing people say that gets under my skin is: "I have a cold and feel terrible. I don't think I could feel worse. By the way, how are you feeling?" and "You are ill? but you look so good!"
24. But I love it when people: modify some of their activities so I can still partake.
25. My favorite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I’d like to tell them: that is will be heard, it will hurt, there will be worry and despair, but there will be good moments within the bad which although not worth the disease are still wonderful to experience.
27. Something that has surprised me about living with an illness is: that the days which used to be my bad days before I got sick, i.e, days with a cold or the flu, are now my good days and I embrace them.
28. The nicest thing someone did for me when I wasn’t feeling well was: to make me a big cup of tea and get me a magazine from the bookstore.
29. I’m involved with Invisible Illness Week because: there are many people who struggle with everyday tasks. I think that people need to learn that life is not about doing extraordinary things and failing if they do not achieve there goals, but about enjoying and savoring what you can do. Accept who you are and what you can do withing your limitations because pushing yourself to hard, mentally and physically, can make you unhappy.
30. The fact that you read this list makes me feel: that people recognize hos serious chronic osteomyelitis is.
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