Right now we are on the way to take me to surgery. A month ago I had a blood vessel come to the surface and burst, and then created an abscess while I went through seven doctors to finally get this far. It took the sixth, my brilliant specialist, to get it figured out and call in a favor to get me seen by a surgeon he trusts. So in two hours I will be going under anesthesia and right now I’d beat someone with my cane just to have a drink of Dr. Pepper. Lol. Fasting from midnight has sucked! Anyway, I appreciate all of the support while I’ve been trying to get to this point and hope to come out the other side of this with a lot less problems in the end. Thankfully one of my best friends kept me texting about other subjects yesterday so I couldn’t think about panicking and canceling. Sometimes knowing too much about all that can go wrong is a really bad thing. *grin* I hope you all have a wonderful St. Patrick’s Day, even if you’re just have some honorary Irish in your ancestry for today. 🙂
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 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. 😉
If you have the time would you please consider signing the following petition for the White House to review at CBD Petition? CBD stands for Cannabidiol, which comes in two variations. You can get it “…from medical marijuana plantsor from industrially grown hemp plants. Both are varieties of Cannabis, but they are grown for different purposes, and each one comes with its own legal status…Cannabidiol from industrial hemp also has the added benefit of having virtually no THC. This is why it’s not possible to get ‘high’ with our products. There simply isn’t enough THC.” (via HealthyHempOil.com)
Until this past December Hemp derived CBD was legal and helped with a lot of ailments, varying from headaches all the way to Fibromyalgia, and has several options of delivery, such as tinctures or e-vaporizers. The high CBD is for medicinal use while there’s almost no THC, so it’s not like the users are wanting to get stoned. This is for people who are searching for alternative treatments for their ailments, and as of December the government has ruled that even Hemp derived CBD is now considered a Schedule 1 Substance (effective January 13, 2017). You can read the DEA’s ruling HERE. It was argued that the other parts of the plant has little to no THC, but since it can’t be confirmed that it’s absolutely free of THC, they are including Hemp Derived CBDs in this ruling.
I don’t usually get involved in political or governmental stuff, and as a rule it’s on my “no talking about” list, but I’m hoping that the petition gets enough signatures to just get a review at least. Our government’s views on drugs has grown outdated and maybe a review would help bring a call to action that they be re-educated. If you don’t agree with this, then delete this post and have a great day anyway. If you don’t mind taking a few minutes to add your signature a lot of frustrated and hopeless patients will be very thankful. Either way, thank you for your time and I hope you have a fantastic weekend everyone! 🙂
Merry Christmas to all of those who celebrate and my best wishes to everyone! I wanted to write a quick little post to share that Santa brought me a diagnosis of hyperplastic polyps instead of stomach cancer, so I’m one happy gal! 🙂 The polyps are benign and none of the others will be removed. We are back to the starting point for figuring out what’s causing my symptoms, but at least it’s not the big C. Thank you so very much to those that gave such incredible support during a tough time and I promise to personally write each of you. It took a bit to process things and then time got away from me. Each of you mean so much to me and are a blessing to have in my life.
Before I get all mushy, I hope you all have a safe and healthy Christmas! Don’t forget to pamper yourself a bit once all of the guests go home. 😉
I’ve debated about writing this post for probably close to two weeks now. It’s quite simply been a scary time for me and I didn’t know if I wanted to put that vulnerability out there, but as I was saying my daily prayer, which includes a prayer to expand my opportunities and benefit to others, and it dawned on me that this post might help someone out there who is looking up these tags. Therefore, I’m laying it all out.
I have a new doctor that is systematically trying to go through each medication and condition that I have, and trying to find out if I have other underlying conditions that are being masked by these medications or have gone undiagnosed. After a 20+ year history of taking antacids and preventatives for reflux, which finally got diagnosed as GERD about 5 years ago, she decided to change my preventative, which no other doctor has done since I was diagnosed with an Esophageal Ulcer in my teens (without a GI consult, mind you). I have just taken whatever works until it doesn’t and then switch, and my long list of doctors couldn’t have cared less as long as I kept them informed as to which medication was currently keeping the reflux, vomiting, and nausea at a liveable level. She also took me off of my Marinol (synthetic THC), which brought back a fair portion of the nausea and vomiting. The reflux medication she prescribed didn’t work, just like I told her it wouldn’t, sit I’d tried it 15 years ago, so she changed it to a prescription strength of one that usually works for me and then said there was something else going on that needs to be investigated to be causing this. Keep in mind she believes in Fibro, treats it, and everything, so she knows it can happen it Fibro, but doesn’t believe it should be so uncontrolled that I need Marinol to keep my symptoms at bay. She has scheduled me for an endoscopy of the esophagus and stomach. “We need to figure out what is going on.” So me being the nerd that I am, especially with the medical background, started researching EGD (the procedure) and then found a lot of articles from reputable sites (as in, the ones that the neuro office used when I worked there) about the causes of symptoms that lead to this procedure. It turns out I have a lot of risk factors on board and a lot of my unexplained symptoms that the other doctors never paid attention to when I mentioned them were all red flags saying I needed this scope. Long story short, due to all of my medical history and complications, I have around an 80% chance of having stomach cancer that has gone undiagnosed for at least a little while, if not quite some time. It could actually explain why my Fibro has progressed so intensely while I was still young and why it is so debilitating now. It could explain this continual cycle I’m in right now of getting really sick, then seeming to recover, and then starting back over.
I don’t react to things like a normal person, I’m the first person to admit that. There was a reason that I was awesome as a Risk Analyst for HIPAA at the office. I am that worst scenario kind of girl that usually has pretty bad luck, so I tend to prepare for the worst. It prevents me from shattering in front of others when I don’t want to (what can I say, I’m an introvert, so I’d rather keep that to myself or apparently share it in writing for the world to see *small laugh*). Also, if things turn out to be just a little bad, then it’s a big relief and things will be a lot easier to handle. I HATE being unprepared for anything, but most especially my health, since there are so many parts that, excuse the wording, makes life kind of shitty sometimes, most especially if it’s a new diagnosis that I was blind sided by. So I’m looking at that 80% chance right now and going off of that. I did a cross research of survivability of stomach cancer with all of my health issues, which didn’t come up exactly, but came up with enough that left me without a lot of hope honestly. And before you say it I know there’s at least a 20% chance that it’s something small and fixable, I KNOW, but I’m that other kind of person that prepares for the 80% with 100% failure later. I’ve kind of distanced myself from it and am just analytical about most of it. I have a to do list of things that must be done in case I die and I’m working on it. Some think it’s morbid and it’s hard for others to even imagine doing such a thing, but I’ve had 2 friends die from health issues all ready that were younger than me and let’s face it, my health pretty much sucks. I don’t try to seem morbid; I’m literally just focused on what I need to do, how to handle things, and it’s my way of coping. It’s the only thing I’m actually in control of now, if you really think about it. So I’m working on getting my car title changed to my married name so that my husband won’t have to fight probate for it, I’m working on an instruction manual for the household appliances and cleaning that he has never done, and I’m working on making these the best holidays ever.
I want togetherness and happiness, just in case this is my last one. Hang every ornament while remembering how it came into our family. Have a deliberate reason behind each gift instead of it just being about commercialism. Our Christmas tree stays lit almost around the clock because of my love of Christmas lights and we even got a strobe of snowflakes that should be outside, but he kept it inside so I can sit and watch those lights too, and try not to miss too many chances to bask in the comfort of those lights. This year it’s all about the love of our tiny family. By Christmas Day I should have my results, since my test is just under two weeks away, but until then, I’m going to keep coping. I’m also going to keep cherishing every moment with my family, my loving and insane fur babies, and enjoy every little ounce of Christmas cheer that I can. Maybe we should always act like it’s our last one, since anything can happen. I know that as soon as I started treating it as such my heart seemed to overflow, feeling too big for my body or soul. I count my blessings and stop to see the beauty all around me. And maybe this is the impact that I can share. While a little bit of my heart is tearing itself apart over the thought of losing those I love, my little life, and the moments I might miss, the rest stays focused and works on my end of life goals because of the love in my life. I want to protect them if I’m unable to handle these things later. I love them too much to leave it unresolved and in their lap. So if you’re going through a really tough time too, focus on the love and let it guide you. And cope however you need to no matter what anyone else says! You do YOU and just try to get through this however you can. And if you feel alone, just reach out. It can be a relative, a counselor, or even to me. For me, though, I’m going to do my to do list and then make sure everything is easy peasy for Christmas Day so we can just spend time together and have our grinchy hearts grow two sizes too big from all of the love. 🙂
In honor of Cyber Monday, 11/28/2016, I am offering 20% off purchases (excluding shipping) today.
As you can tell from the following picture I have been busy for weeks working on soaps to post today. Please check out my Soaps page on the website! I did quite a variety from an “Undead Collection” to Snowflakes to Maple Bacon Bars, and many others in between, so there should be something for everyone. This picture was taken just after unmolding several batches of soaps, and before I got a few batches finished, but it gives you a good idea of how hard I’ve been working. Ignore my Thanksgiving list in the background please. *laugh*
I hope you have a wonderful day and I hope to start blogging regularly very soon. In the meantime, help someone pamper themselves today. 🙂