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Monthly Archives: February 2017

Finally Some Answers

Well, it took my specialist yet again to actually get to the bottom of things and diagnose my problem.  He’s never seen it either, but agreed that it only made sense that I had a blood vessel surface, burst, and get infected, probably due to pressure from coughing, on top of a weak system.  He’s going to call personally to a few surgeons to see if they’d be willing to at least consult with me and see if they can fix the area.  Unfortunately it’ll be a very painful and difficult recovery from the surgery, but at least they’ll be able to cauterize any blood vessels in that area, which will take a huge load off of my shoulders.  I’ve basically been afraid to do anything for fear of causing it, or another vessel, to suddenly rupture, and go through another month of agony.  It’s a relief that he agreed with the diagnosis I had come up with and that he wants this to be handled immediately, instead of dragging it out again.  I have to say every single time I see him I am in even more awe of his abilities and his brain.  He is truly the most brilliant man I’ve ever met.  I will always be thankful for my former boss asking his old colleague for the favor of doing a consult of one of his employees.

 

There is a pain scale from 0-10 that I always have to evaluate at every appointment for my different trigger areas, and even on my bad days I rate those at about a 7, because I’m still making it through the day.  While my wound was bad and I was concerned about sepsis (thank goodness for antibiotics), I rated my pain at a 9 for the very first time.  When I told my specialist that,  I think that’s when he realized just how serious and scary it had been for me.  He said that he doesn’t want me living in fear that any moment anything I can do could put me back at that stage.  At a 9 it’s hard to push to keep trying to get through the day and you seriously wonder if it’s worth it.  Like maybe your body got a memo that your brain and soul didn’t yet.  So I’m thankful that I have a doctor that knows me well enough to know my limits and my needs, and who is taking this seriously.  It was a long path to get there, but I’m thankful he was consulted on this.

 

While I’ve been going through all of this I’ve had an awesome support system and want to thank all of you that have been there for me, have left me FB or email messages, and have given me the encouragement to keep making my way through this journey.  I appreciate every single attempt to contact me, especially since I tend to get even more introverted when I’m dealing with difficult things.  Please know that I am working on not being quite so introverted and that I thank you for being patient, especially when my health takes a turn.  You all mean so very much to me and are true blessings in my life, whether in “real life”, social media, or my “second life”.

 

I’m hoping to hear Monday about the surgeon, so please cross your fingers for me that he is able to convince his top pick to do a consult.  After all of that I can focus on my big marketing idea that I can’t wait to share, but seemed stupid to share when I didn’t know when I’d ever get the chance to actually do it.  So I’ll tell you all about that soon!  In the meantime, I hope you all have a wonderful weekend full of happiness and health, and maybe a little extra pampering. 🙂

I’ve Stumped 4 So Far

I’ve gone a bit introverted for the past few months as I deal with things and I’m just honestly not dealing so well. I don’t want this to turn into a whiny blog, so I tend to not blog if things have been difficult…so my blog lays silent sometimes. I realized that this needs to stop. First, what’s been going on. 
I had a sinus infection with possibily bronchitis for a few months. The doctor prescribed the first time she saw me, but it was a short term, and I never got over any of it fully. Went back in and she was uncomfortable prescribing again so soon (oh ye, who hasn’t read five inches of medical records and has little faith in my helpful info), so the infection progressed. One night I had an intense coughing jag and had the weirdest feeling. All of a sudden blood was pouring out of a swollen wound. Thankfully elevation, pressure, and comforting phone chats with my mom and husband, all helped the bleeding stop. I was sick, had just bled a bunch, and really didn’t want to expose my immune system to even more stuff, so I decided it was smartest to stay home. 
During the next few days I didn’t do much moving. I was weak and sore, and every time I did much of anything (oh sneezing was horrific!) I’d start bleeding again. I finally went to my PCP and she was very thorough. I give her that. She really tried her hardest, but said she had never seen anything like it and had no idea what to do, so she prescribed some heavy duty antibiotics to minimize the swelling, to hopefully stop the inflammation and bleeding. Unfortunately it wasn’t enough and she referred me on. An emergency consult with a Trauma Surgeon turned into a visit with three of them, and all of them are puzzled. So they put me on more antibiotics and thankfully some true pain killers that allow me to function a bit, instead of staying in bed curled in a ball from pain. Although to be honest I stay in bed sleeping a lot of the time right now anyway, since my system is wiped out. Anyway, they learned that I have my biannual follow up with my hero Dr. Jones on Friday (10 days from when I felt like I joined the circus), so they were just going to put a prescription bandaid over it all and want him to diagnose this. One of the surgeons actually said “You stumped a Trauma Surgeon!” as if that was a feat I had on my bucket list. I have enough puzzling health issues; I was not amused. 
So now I’m mostly out of it and when I’m not, I want to be. The bleeding has improved as the infection has improved, but I still have a massive inflammation of tissue and an odd spot for spontaneous bleeding. Not to mention if I do anything for more than five minutes, even just standing, the pain starts to override the med, and I’m trying to stay light on the Hydrocodones. If it closes I’m afraid they’ll have to open and debrid the area, since it’s still a big inflamed extra area of skin, but if it stays open, maybe there are easier cures. It just depends what the brilliant Dr. Jones thinks. I just hope he remains as awesome as ever and is a stellar diagnostician on this, too. I’d like to be able to resume life again, even if it was fairly limited. I’m hoping (and it’s logical to me) that I just caused a blood vessel to surface and burst with the intense coughing, and that it then got infected because of my stellar immune system. My luck doesn’t generally go that well though, so they’ll probably have to do filet me open for some exploratory surgery (as long as it’s not the one unimpressive Trauma Surgeon!). 
During my “present” times I’ll try to blog about some of the fun ideas I’ve had for when life resumes and I will introduce you to my Second Life sister, who is going to help blog a bit on here. She will test some recipes (she has less limitations and a more diverse palate, so you’ll get some variety finally *laugh*), blog a bit about rejoining an online community (SL), and some other happy topics. I want to breathe a happy air back into this blog and not have as many obvious dead times when I’m down, dealing with health issues. Look for an introduction to her soon and look for me to update my website. She pointed out that it was still set up for Christmas. Ah, the things that get overlooked. *grin* 
This Friday hopefully I get some answers and maybe even get to go back on the Marinol. I lost 7 pounds in the past 4 days, which I could use in general, but not in this way.  At least this time I’m not having to worry about cancer, thank goodness. Just another issue that doctors can’t figure out, much like the years it took to get my CFS and Fibro diagnoses. Been there and they didn’t even give out lousy tee shirts. 😉 

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