Sometimes, no matter how hard we try, things just don’t go the way we plan. I planned on a happily ever after with the man of my dreams, very little hiccups along the way, and as little down-time from illness or sickness as possible. I should have known better than to try and plan. I certainly didn’t plan on being sick as a newlywed. I didn’t plan on spending 90% of my time in doctors’ offices, or looking up new doctors, or researching treatments. On having a radical hysterectomy less than two months after saying I do. November 30th, 2015 I arrived at Blessing and checked into surgery. I had everything removed but my left ovary, so that was fun. Not. I had a pretty uneventful surgery for the most part, lost a couple liters of blood that had to be replaced, but I have been told that’s pretty standard with the surgery I had. They also removed some endometriosis that I didn’t even know I had. So there’s that.
At my 1 week follow-up everything looked good, and I seemed to be healing well, which was a nice surprise, was given my history. I should have known right then and there that things were going too easy, that something was bound to go wrong. Sunday, December 13th, 2015 I started bleeding. Okay, I thought to myself, this can be normal; spotting can be a normal occurrence with a hysterectomy. At 6:30 that night, that’s all it was, spotting, so I wasn’t too concerned. By 11pm that night the spotting had turned into full on bleeding enough to fill a pad ever half hour. At this point it was more than concerning, at least to Shawn and I. So, off to the ER we headed. Blood work was done of course, and not much else, there was talk of doing an exam, but they decided it was best to not mess with the cuff and we were sent home. So, we headed to bed, with a full maternity pad on, clothes, and a towel folded under me. When we then woke up in the morning with me in a pool of blood, through everything I had put under me, the immediate reaction was to head back to the hospital. So off we went, again, for the 2nd time in less than 12 hours.
Once back at the hospital, the ER doc called my surgeon and was told to send me straight to her office, so they discharged me, and sent me the 4 or so blocks to Dr Mero’s office. She immediately had me in an exam room, and less than an hour after heading to town I was sent upstairs to emergency surgery. I had a stitch that had either dissolved too quickly, or that I had torn, that they couldn’t fix without surgery. Meaning that they couldn’t stop the bleeding, and I was losing extremely large amounts all at once. We were scared to be honest, but knew that we were at least in good hands with Dr Mero. My brother and one of his friends were there with Shawn, so thankfully he wasn’t alone while I was out, which is always one of my biggest concerns. Then the next day we were right back in the ER with a freaking infection, I think I was too tired to think at this point. All of the help from our family and friends has been beyond appreciated, we can’t say thank you enough to everyone.
Sometimes though……I start wondering if we’ll ever catch a break, if the constant barrage of health issues will ever stop. Just when we start thinking that we have started to get a handle on things, that we might see the light at the end of the tunnel, we get slapped with just one more unknown.
The newest diagnosis is autoimmune disease. Yep, another disease. ANOTHER one. In case you’ve lost count, that’s 9 new ones this year alone. NINE! The complete list of new diagnosis is; heart arrhythmia, Chiari Malformation 8mm, POTS, Perineural cysts, thoracic Spondylosis without Myelopathy, cervical Spondylosis without Myelopathy, Adjustment Disorder, Straightened c-spine which is now starting to curve the wrong way, and autoimmune disease. I keep trying to remind myself that most of these things are Chiari related, and I have faith and hope that after my brain decompression I will feel so much relief.
There are truly times that I just want to lay in bed, and try to pretend that none of it has happened that nothing is going on, that nothing is wrong with me at all. After all, as my Great-Aunt Donna said, I look healthy, but it’s like there is a war going on inside my body. Now, with the newest diagnosis, I know that my body is quite literally attacking itself at every turn. No wonder I never feel good, no wonder I am always tired. I seriously have over 2 pages of symptoms and to be honest I don’t even list them all. Why would I? I feel like I’m whining. And, unfortunately there are plenty of people that tell me that I am whenever I even mention what’s going on with me. Or I get told to “try harder, exercise more, change your diet, go gluten free, dairy free, soy free, etc”. Here is the thing that I’ve learned with chronic illness though, there is NO trying harder. I try my hardest every single day of my life to feel my best. To accomplish as much as I possibly can. Unfortunately though, some days I know that my best will be nothing more than getting myself from the bed to the couch. Some days that involves my loving and wonderful husband getting me into the shower and dressed and moved to the couch before he ever leaves for work. Then this amazing man comes home from a full day and takes care of not only me, but then the house as well. He cooks our dinner, and does whatever chores I wasn’t able to complete during the day, which unfortunately can be a little or a lot simply depending on my day.
So, all of this would make most people I’m guessing want to curl up in a ball and just not deal with anything, but I don’t feel like that’s a real choice. Even though, truth be told, I have days of wanting to do just that. I have to fight like hell at times to smile, to talk to people, to remember that at some point I might just feel better. The things that are able to keep me going? My husband’s love, my beautiful nieces smile, all of my nieces and nephews and the thought of seeing them grow up and wanting to push my nerdiness upon them, so they don’t end up too cool like their parents, tormenting my siblings and my best friends, and our families. I might very well be fighting something physically that will never have a cure, but I can’t help but smile. I have such a full and wonderful life, and I’ve never felt a love like I have with Shawn. I am so blessed every day that I get to wake up see his smile, and every night as I get to lie in his arms and fall asleep. I can’t ask for more than that, because to me, that is true happiness.
There will probably always be days that I struggle; either to get out of bed, to get dressed, to answer the phone when people call and try and be friendly, and to smile when I want to cry, BUT I will get through them. Maybe not each time, maybe not every day, but I’ll take it day by day and minute by minute until I find my resolve once again when I feel myself falter.
I’ve always posted as much as I can over the years to try and help people with Fibromyalgia, and now, my hope is to post as much as I can about Chiari Malformation and all of the connected diseases and syndromes. There are honestly too many to post, and I can’t even begin to act like an expert on any of these things; but I need answers still myself, and I can’t find enough in one place. So, like when I was diagnosed with Fibro, I’m going to do my best to help others the best that I can with as much information as I can find.
I’ll try and post spreadsheets with symptoms, misdiagnosis, connected diseases, tests my own personal films and results etc. There is a lot of misinformation floating around as well, and I will do my best to not be another site of incorrect information, so if you see something that doesn’t look or sound right, please feel free to call me out on it. You see, I’m learning all I can about this disease, and in the process I intend to try and help as many people as I can along the way. My best friend, really my sister, Sarah, tells me all the time that the reason that all of this is happening to me is so I can help others understand maybe what they are going through with my words. So, I’m going to do my best to do just that and hopefully, it’ll help me in the process.