I am getting the sense that a lot of people had a cruddy 2016… let’s hope 2017 will treat us all well! Wishing everyone a happy and most of all HEALTHY New Year. Something’s gotta give, right? I’m aware it is now February and I am behind the times. I’m here for an update though!
My memory is pretty much shot and I am having a brain fart so back to the past blog entries I go. In a nutshell, this past year consisted of lots and lots of sleep. Becoming more and more of a train wreck. There is a video that I posted this year, and it makes me cringe that I am even that way. Here it is once again for your enjoyment! Kind of a summary of my bad days.
And, going back further, here is a little year by year since I have started treatment 🙂
All I know is this past year has been nothing short of frustrating and discouraging. I am doing all I can to remain positive, hold onto hope that things will get better, and I always look for those silver linings, as small as they may be every single day.
It may seem like the end of the world one day, but I find something to be grateful for. I always can.. whether it is my husband, my family, friends, or my fur babies. I remember there is always tomorrow, a clean slate. We all know things can change on a day to day basis, so I always have my fingers crossed that it will be a little better.
I suppose I always hold onto the phrase we HATE to hear from those who aren’t sick. The phrase that makes me want to smack people who don’t understand what so many of us deal with on a daily basis. “It can always be worse”.
See? Healthy people can’t say that to us. It is a big eff off phrase, one that invalidates us and our suffering.
I will say though, I am glad I am not worse than when I started this journey of nothing short of hell. There are things I can do that I hadn’t before seeing Dr J, and I am eternally grateful for him.
There is a “but” though. I am still not better. Not even close. I am backsliding without a doubt, life has been pretty miserable to be honest, I am not where I expected to be. I know what “it can be worse” means, and yes. It can be. I have been there.
I found myself in a place without any answers. All my tests hadn’t given me any answers other than what isn’t wrong. I was retested for immune complexes and it came back clean. Hmm… I am not sure Lyme and all my other fun diseases are the main problem anymore.
They likely still are, as my notes I have collected from my neurologist state I am Parkinson’s-like. I am wondering if that there is still a very active infection brewing, or something that Lyme has brought to me in neurological damage.
My end of the year appointment with my naturopath sucked. I was told that this might just be the way it is going to be for me, but maybe it can somehow be better managed with different seizure medications than I am taking. The guess was that my issue could possibly be epilepsy, and having Tourrette’s and permanent neurological damage.
It was recommended to go to Boston for better neurological help and yet more and more testing. Then came the words, “I am frustrated we aren’t finding the answers, I don’t think I can help you. I think you are out of the realm of doctors and neurologists here”. I appreciate the raw honesty at least. It did make me feel completely alone though. Like I am to the point I am getting given up on.
Then the topic came up and I am kind of interpreting it in my own way which I am not sure is entirely correct. It ate away at me the more and more I thought about it. This is from my biggest advocate that has helped me incredibly so it hurt the worst.
We have done SO much testing to try to figure out what is going on with me and were getting absolutely nowhere. I told him I wish I just had a “feel good” diagnosis, one that is just a title that makes me feel better inside so I don’t feel crazy.
Although I was told he doesn’t think I am crazy, that he really believes something very big and neurological is going on, he lead to the following direction that if further testing is done and nothing comes up that it could be in my head and that sometimes this just happens.
Then explaining further, he didn’t think I would be spending all the money on testing if it was in my head.
Now let’s slap some icing on that cake… That maybe I am having continuous issues because my mother has suffered from mental issues. I got a bit snippy with that comment. I’m not going to get into fully it as it isn’t my story to tell, but it isn’t relevant to me in any way.
Then the conversation turned back to the nicer more reassuring, “I don’t think you’re crazy”. Yup. Ate me alive. I know he does believe me but even saying that at all was a big fucking ouch.
A few important side notes to the previous comment toward me I should include. One, I really don’t think many doctors have a lot of knowledge about mental illness. What was referenced to me was basically equating a soldier coming back from Iraq with PTSD having a child, and giving that child PTSD from their experience in Iraq. It doesn’t work that that. It is not hereditary.
Second and most importantly, I think if someone is to insinuate something of that nature in any sort of way, that you could just be Fifty Shades of Crazy, they should have the appropriate resources to give such as to names of therapists or doctors to talk to, advice to give, direction.. anything.
I will say, I know I am strong as hell but what if someone isn’t? What if they have been struggling to find the answers and they got that sort of response with nowhere else to go? Just my opinion, that is the sort of thing to say that can very well put someone over the edge.
I held it together until I got out to my car and bawled my eyes out. I bawled my eyes out that entire afternoon. The tears just wouldn’t stop. It was probably one of the saddest moments and an appointment I had the entire year. Maybe more. I felt pretty hopeless with everything. I knew I wasn’t crazy. This isn’t my first rodeo being sick. And I KNEW something was going on. When you know, you know. I just hadn’t been given the right tests.. yet.
I know myself. This is not the way I wish life could be. Anyone who knows me knows I loved to work as much as I could and waitress. I loved to walk my dogs. Sing, go dancing. Going skiing with my friends.
I absolutely loved working out and taking classes at the gym. I loved spending time with my husband doing things like going wheeling in his mud truck. I really was full of life. I was a social busy bee. I just can’t imagine my brain ever being like well, I am just going to make you like this for the hell of it, you want to be this way.
I really hadn’t had anything done other than blood work, and MRI and SPECT scan that was done years ago. Fortunately, as I will get there sooner or later in this post.. I GOT AN ANSWER!!!!
I had an appointment for my POTS at the end of the year as well. The doctor told me that I need to suck up that pride of mine, that I need to just wear sunglasses and use a wheelchair or scooter again to try to at least get out of the house.
This was a new doctor as I couldn’t get in with my electrophysiologist, but he made additional suggestions for POTS and I liked him a lot and overall it was a good appointment. Yes, he told me to just get out there and do it, but I got good vibes from him.
After looking at the abundance of supplements and medications I take, he told me I take enough with a “holy crap” look on his face, and told me to no longer take the Florinef and to call if I think it is needed again. I haven’t noticed good, bad or indifferent off of it. One less pill to swallow.
He asked me how much water I drink a day, and I drink tons and tons. He said that is great, but I am completely depleting myself of sodium. With POTS it is really important to stay hydrated, however, it is all about balance. He wanted me to drink Gatorade types of drinks, which I know are loaded with sugar and are a chemical shit storm. I ended up finding online GMO free, things you can pronounce powders to add to my water with electrolytes and sodium.
He suggested bullion cubes and warm water. I have been doing that and I am waiting on some Himalayan sea salt capsules, one gram of salt each pill. Another pill I know but it beats bullion cubes. I will continue working on using my recumbent bike, and was told I really need to wear my compression stalkings.
I was talking with Dave about using my wheelchair again and telling him about my pride issue, and he understood exactly what I meant by pride. It has been a long time since I have been in that chair. This is a purely mental thing. A reality that I have fallen back so much that this is what I should be doing. Knowing that this is where I am makes me just want to stay at home because it just pisses me off.
Another reason I really don’t want to have to resort to using my chair again for distances is t the doubts of other people who watch you and question you. If you happened to go to a store in your wheelchair, then stand up to grab that can of soup or whatever. Why is she using a wheelchair if she can stand? What is she just lazy? Yup. Judgment. At least Dave gets the way I feel about all of this.
I had my nighttime and daytime sleep studies last month. Here I am all hooked up and ready to go! Aren’t I pretty?
Well, the nighttime study showed I do not have sleep apnea. I always describe my sleep as being like a rock, the house could be on fire with sirens going off and I wouldn’t get up. Alarm clocks are pretty much useless to me, and I have fallen asleep with my phone on me and have had texts and calls that I never even heard. I guess that is in fact not the case for me. I fell asleep and hit REM very quickly, but I woke up over twenty times. OVER TWENTY TIMES! I wasn’t even aware that I even wake up at all. That is one characteristic of my most recent diagnosis.
During the daytime study (MSLT) you are not hooked up to quite as much crap since they are no longer looking for sleep apnea. It consists of 5 naps every couple of hours for 30 minutes. Between naps you just read, watch TV, or in my case Facebook it and keep my Sims happy.
I told the tech who took care of me for the day about what was going on, lots of tests and no answers. While she came in to set me up for my final test, she looked at me, smiled and said, “This test was worth it, you’re finally going to get answers”. I didn’t want to hold my breath but was excited that there was a possibility that I might have actually had a test that revealed SOMETHING, ANYTHING at this point.
I expected a week or two for my results, since these things take time and a lot of times with medical stuff it is always sit and wait. I got a call 3 days later from my sleep neurologist’s office and was asked if I could come in as soon as possible, and to not wait until I had my appointment with my regular neurologist the following week. Hmm. So, I went in the following day.
“You have narcolepsy”.
Wait, what? Honestly, I was kind of expecting to hear sleep apnea, or idiopathic hypersomnia, which basically means that they agree that you are sleepy but do not know the cause. My daytime study I fell asleep within 3-5 minutes and hit REM around 8-12 minutes as an average. Wow! For anyone familiar with sleep patterns, people hit REM within 90 to 120 minutes of sleeping. For a narcolepsy diagnosis, one must reach REM 2 or more times, and fall asleep very quickly. Boom. I got an answer.
Unfortunately, this is going to be a lifelong ordeal, there is no cure. You basically slap a band-aid on it in hopes you have a better quality of life. Be careful what you wish for?
I was put on Nuvigal, and have been taking that daily. I am still tweaking around with timing but I am glad to report it has helped significantly. I have had more energy to be more productive, I have gone out to dinner, and even stayed up to watch the Superbowl. It is also good that I am being more active using my legs more. Is it perfect? No. Like I said, it is a band-aid, but I feel a lot more lively. I have taken it for two weeks and have only fallen asleep three times, and about one hour or two, not the several times adding up to 5+ hours a day.
I have noticed it makes my mouth super dry, I have armed myself with artificial spit spray haha, and I started to have oral thrush this week. I have been swishing with coconut oil, and that has made the little blisters on my tongue less “angry”. I feel pretty foggy.. okay foggier than my usual about an hour after taking it and that feeling lasts for a couple hours but seems to dissipate.
I saw my regular neurologist and pushed and pushed for some additional testing. It was kind of like pulling teeth. He told me that we were finding out a lot of what things aren’t, and maybe we should wait and see. I told him that I have taken the wait and see approach for going on five years, let’s continue on with the finding out what things aren’t.
He brought up a valid point in which I would agree, an MRI wouldn’t be entirely helpful, since he has been a part of my care for years and seen me at my worst he hasn’t doubted me and when I was much worse he ordered an MRI, and there was only a small lesion in my spine and he didn’t think it would show much else.
He offered to refer me out if I wanted to, to possibly see a rhythmic movement disorder specialist, but also told me that we can agree that I definitely have a rhythmic movement disorder of sorts, maybe just not a name for it, and what would be done is maybe them naming it, and putting me on the same drugs I am already taking. I guess I would have to agree with that too.
I also learned that the EEG during the nighttime study did not reveal any seizure activity, so he thought that I likely do not have epilepsy, just plain jane seizures. I didn’t really think I did. He brought up an interesting point that perhaps my absence seizures and limp noodle seizures aren’t actually seizures at all. He thought maybe it was purely related to Narcolepsy and I am actually falling asleep for a brief second, causing me to fall, or appear completely zoned out. That is a possibility.
I got the test ordered that I have wanted for a long time, a nerve conductivity test in my legs and feet. This will show if there is a nerve problem or permanent damage. Even if this comes out negative and he can throw it in that “we know what it isn’t” pile, I will know. If absolutely nothing shows up, no permanent damage, I know that it is those damn buggers. And with that information, I need to continue treating.
I will likely end up treating further sooner or later (next month?) to just see what happens. You will know pretty darn fast if you still have bugs going crazy. A good example is with Babesia treatment. You are either going to react to it, which is a tada moment, or you won’t. Things like Mepron don’t touch Lyme bacteria so you’d know right away. You get answers. Right now though, I am still learning about my body handling this new medication, and my gut is still not up to par to be taking antibiotics.
This topic is one of the things I had discussed with Dr S during my most recent appointment. This appointment went way better and I left on a positive note. No tears. Did I want to slap those sleep study results on his desk and give him an “I friggin told you so!!!” ? Kind of. I refrained and adulted. Also, regardless as to how much what was said hurt me, I don’t like to burn bridges, and I do really like him and think he is a great doctor and very smart. I also think it hurt me more because it came from him versus anyone else.
To be fair, it wasn’t really an expected result for the sleep study as narcolepsy is really rare. Roughly .05% of the world’s population. I can understand that not being on the top of the “guess what illness Kimmiecakes has” list of possibilities.
Today I received my results for MarCons testing. I do have a little bit of a Staph infection going on in my shnoz cavity, but it isn’t raging. Will I do something about it now or wait it out? I’m not really sure. I might just wait and see what the test results are on my legs and feet, as a small amount of Staph might just go away on it’s own.
I feel like at least I am getting some answers and the ball rolling for 2017. I mean.. it stinks that I have Narcolepsy but at least I know. Knowledge is power. And a little Staph party in my nose. I know that those things aren’t going to save me from all the other neurological problems I still face but at least I finally feel like I am moving forward. I will never stop looking for answers and fight to get well. Keep fighting my fellow warriors!
Did you think I would forget Miss Olive? Here is little Miss Troub Troubs looking sad we were trying to keep her out of the laundry room! She still got in by the way.