Unknown Health Issue

So I haven't written here in a few weeks, I have been dealing with a few things, and its kept me busy. I think moving forward I am going to give myself a schedule that way I can make sure I get stuff up here. I was thinking I would write a weekly story about my life and how I grew up, a post on my health stuff, and then just one about advice and what I do to live with my ostomies.

I am not able to disclose what is going on becuase I don't even know what is going on. Also my primary provider is on leave. Its crazy this is the first time this has happened. I have been dealing with this in secret because its not debilitating or anything its just a weird problem. I feel like having had all the surgeries I think things just happen. My health team likes to joke that nothing is "easy" when it comes to me and my health. Which I believe is a very true statement because things that shouldn't happen, have a weird way of happening. When I had my urostomy put in I had a post operative infection almost three months after surrgery. Typically the range for a surgical infection is within the first - two months but for me my body said nope and I had it in November. I have been septic multiple times and fevers are very hard to deal with.

Your body gets really cold and I get these intense shivers. My body shakes like crazy and I feel dry. I hate really intense fevers. I always wonder how people handled them before medicine was as prominent as it is now? So I have been dealing with a minor issue it is more an annoyance than a life threatening issue. One thing I have learned though is that preemptive treatment is better then actual treatment. What do I do when I have a problem where I am not sure what to do?

I always identify the issues, I write down what my symptoms, where it is located, and how it impacts me. I put it on a scale of how much it impacts my life. If its not an emergency like a fevery or heart issue I will wait a few days. Havjng been hospitalized as often as I have I know what will typically get me admitted and what they will typically send me home. I do sometimes get surpsied but typically I know. From there I log my symptoms for a few days and also doing so lets me see if it will resolve itself.

After a few days if it isn't improving I reach out to my health team. My health team is vast it ranges from multiple surgeons and providers. I also have a therapist and typically I keep her aprised if my health impacts my mental health. I usually loop in my provider who has been managing my healthcare since I was a child. That way they can point me to who I might need to see. Especially if its something that is a product of my ostomies, exstrophy, or spina bifida. Relaying the information is the right provider is important and makes it easier to be seen. From there once I mention it to my providers they are going to want to see me. I usually take my wife with me to my appointments because she can mention anything I might have missed. Sometimes I forget or I don't realize how much it affects me.

Tips logging health information,

1. Location of issue, it is on my hip and radiates from there to my lower back

2. Describe the issue, I am having orange secretion from my ears, my head is spinning, and I have been having this sharp pain in my neck. Use precise adjectives. The more detailed the better.

3. How it is impacting you, I cannot get out of bed without feeling this sharp pain in my foot, I can still walk but I have been noticing it when I plant my foot.

4. How long it is affecting you and when it started, It started last Friday and its been going for six days now.

Remember details matter it helps doctors narrow down what is going on. The more information the better and do not be ashamed. I think because we how we are supposed to act in public impacts what we can present to our doctors. Keep in mind that doctos cannot disclose information on their patients. Paient confidentiality matters and what you say between your doctor and you is between them. Trust me, I have said alot in my appointments, and never have I had to worry about them breaking confidentiality.