Down the Rabbit Hole.....

Desolation, dejection, cheerlessness, hopelessness, heavyheartedness, woefulness, unhappiness, qualm, sadness, sorrow, melancholy...........depression.  I think it's probably hit everyone at least once or twice in their lives, and I for one thought I had dealt with my fare share of it after my Uncle David was murdered in 2008.  I thought that I had experienced the worst depression that I would ever deal with. I was wrong. 

I thought I was dealing with everything that has happened in the last couple of years; health, family, and life wise. I just kept keeping on, so to speak.  As soon as we got the Chiari diagnosis, I started counseling to deal with it. I talked to everyone that I thought could help us deal with it, I researched non-stop, I joined support groups, and I started reaching out to others with this condition and formed a rather strong support system. It's funny how easy it is to trick ourselves into thinking that we have everything under control.  How easy it is to tell yourself that no matter what, you’ll just keep pushing through, that so many others have it worse than you, that you just have to keep pushing….pushing…..pushing…..until you crack.

Until you wake up one morning and you can’t get out of bed because of the amount of stress that you can feel literally sitting on your chest.  The weight of everything that you just kept pushing through for so many years, that you just kept pushing down, comes bubbling to the surface. Because for all your big talk on dealing with emotions and facing things head on, when it comes down to the heavy stuff, you just push through and survive, instead of thriving. I am not one to dissect my emotions, and feelings, and things that I’ve been through and experienced in my life. My therapist points this out to me at almost every session. She says I should learn to deal with everything, she says a lot, we laugh a lot, and she’s right, but I’m not good at it.  To me, they are just things that happened, or occurred, and not something that really deserved any type of recognition, that deserved any time or effort be spent on understanding them. I always had something else that I could focus on, in the past it was mostly work; I could do 12 or 16 hour days standing on my head, until I couldn’t.  Until the pain starting playing such a major role in my life, when the forgetfulness starting affecting my work, until the searching for words embarrassed me in meetings and on conference calls and in training classes. Until I felt like my condition took over my life. 

Very few people really know why I left my job in Columbia.  Frankly, it was because at every turn they were violating laws put in place to protect people with chronic illness, they were asking intensely personal questions about my doctor’s appointments, medications, treatments, and requiring doctors notes any time I missed a day, or an hour, even though I had Intermittent FMLA, which covered all of those things.  It didn’t matter; they pushed and pushed and pulled me into HR meetings over it, and overall made me feel like crap for taking care of myself when I needed to.  It didn’t matter that for almost a year I was working sixty plus hours a week, it didn’t matter that I would come in early and stay late whenever I was able. It just mattered that I wasn’t doing it now.  I believe there is a saying or meme floating around somewhere that as long as you are doing a good job, nobody notices, but if you mess up once, it’s the end of the world. That’s precisely what it felt like.  Except, I wasn’t actually messing up, I was supposedly covered by the law, and yet this fortune 500 company did not care. They were looking for a way to push me out, and finally, after one too many meetings to discuss my condition and how they felt it was affecting my work, I had enough.  I refused to be fired, even if it meant I could draw unemployment, because I worked too hard to get to the level I was at with them.  Instead I chose what I thought was the more honorable route and resigned.  At least that way I felt like it was something that I had control over and I could leave with some sense of dignity.  It didn’t matter that in 3 years I had 5 promotions, had helped start the sales and training department, had written material that they still use to this day.  None of that mattered to them anymore, and honestly I didn’t want to work for a company like that any longer.

I digress……the point of all that is; I started losing control of so much more after that. My symptoms started increasing; I had all of these new things happening and no idea why.  We were in the process of moving back to the Quincy area, and we were searching for a new doctor in the mist of all this.  I was without my pain medication for almost 3 months waiting for my first appointment with the new doctor, and I really got used to being home, because it was the only place I could control my environment, not be over stimulated, and therefore have some temporary pain relief.  I still feel that way; the days the medication is barely touching my pain, I know that if I stay home I will fare much better than I would if I was out and about in the community.  Something that so many people still don’t seem to understand is that if people with chronic pain are put in situations where there is sensory overload, it makes everything we are experiencing so much worse.  When I know we have to be somewhere for an event, or a family gathering, or even going to the store, I pretty much do nothing for the days leading up to it.  If I don’t, I can’t manage my pain enough to go do whatever it is that needs doing.  As much as I love playing with my nieces, nephews and god children, spending a day chasing them around does me in for a day or two every time.  It’s totally worth it each and every time though.

Losing control of so much at once is what I think started my journey down the rabbit hole.  “What is the rabbit hole”, you ask? Well, to me, the rabbit hole is the descent into the unknown, the descent into endless doctor’s visits, visits to other cities to see specialists etc. The descent into the thing people don’t like to talk about for fear of being judged, for fear of feeling or looking weak. The fear of really, truly, being afraid of what could happen, what will happen. The fear of feeling utterly defeated at times, of being…………depressed.  I hate admitting to feeling that way, of feeling defeated, sad, angry, depressed, all of it. I hate it because of how hard I try to stay positive about everything that is going on, that is happening to us.  I think we’ve both done pretty well overall of staying positive for everyone else, and always trying to put as positive of a spin as possible on everything that’s happened.  When we are home with just one another though, filling out power of attorney paperwork, advanced directives, medical information over and over again for all of the different surgeons, researching medication, treatments, doctors etc…’s all just a bit much. Each new diagnosis over this last year has brought a whole new slew of medications, a new slew of unanswered questions, a slew of worry and doubt.

          Unfortunately, not everyone is blessed with someone in their corner to help them through all of this.  Not everyone can work through these things, and not everyone wants to. I read stories almost every other day where someone is giving up or already has and many have taken their own lives.  Its scary reading those stories day in and day out, and they can surely help lead to your own depression, and possibly increase it if you’re fighting it on your own. I see it happen day in and day out, people just giving up, they’re tired of the pain, tired of arguing with their doctors to get the treatment they need, tired of searching for answers, tired of losing their identities, tired of losing their careers and tired of fighting with their friends and family to get them to understand even a morsel of what they’re going through. Tired. Of. Everything.  I get it, I truly do, I’ve felt every single one of those emotions, and yet, I could never truly give up.  Sometimes, I feel guilty for being angry and depressed, because in the grand scheme of things I finally have almost everything I ever wanted in life.  I have a husband who thinks the sun rises and sets with me, who is right there next to me fighting to figure this all out, who never misses an appointment if he can help it, and who refuses to let me give up. I have never been happier, or felt more loved, I needed someone that is willing to kick me in the ass when I need it, and remind me that together we can get through anything and everything. I have the support of our families, and the best friends a girl could ask for, and yet when it comes down to it, I still find it hard to reach out to anyone.  I don’t know what I’d do without Shawn, my Dad, my sister Amy, Sarah and Misty. Shawn and I are closer than I’ve ever been to another person, and are able to chat sporadically throughout the day, and I can call my Dad and scream and vent whenever I need/want to. My sister and I talk multiple times throughout the day, I think it helps both of us to have someone that understands what the other is going through, Misty seems to have a sixth sense about when I need checked on, it’s uncanny, and I can usually count on about 10 calls from Sarah throughout the week to chat and check up on me, even when she’s going through all of her own shit.  It’s still hard though, the only people I admitted the depression to at first was my husband and of course my Dad, my sister called it though, she knew without me having to even tell her at first, Misty found out about a week ago I think, and I finally told Sarah this week.

          Admitting that you are struggling is hard, admitting that you feel like you are beat is harder, and sharing that with anyone is the hardest for me personally.  I finally had a really “real” conversation with both my therapist and my doctor though, and after much thought, discussion with the hubby, research on our options and considering all our options, I went on an anti-depressant.  It’s not meant to be a long term treatment or fix, but something to help until I get a handle on all of the emotions that I’ve buried for so long, and that are all bubbling to the surface at once while trying to handle this medical BS in its entirety.  Which, unfortunately as of right now there is no time frame for, and we’re almost playing a waiting game.

          There was a huge mix up with my records that were sent to Barnes Jewish Hospital in St Louis, and it took almost two months before they got to the correct office, so I finally have an appointment with the neurosurgeon there, July Freaking 1st. Ugh.  I guess I should at least be thankful they got it straightened out at all, it just sucks that it’ll be 6 months after the paperwork was sent there that I’ll finally be seen.  We honestly started considering seeing a local neurosurgeon here in Quincy, before anyone says anything, I know what you’re thinking.  Why in the world would we look at a neurosurgeon here?  Well, here’s the thing, I recently met another local gal with Chiari, who had her decompression surgery done here, and was really happy and satisfied with the results.  Unfortunately, I’ve since heard not such great things about this doctor, that he did used to be a decent and good doctor, but since he’s gotten older, his work has gone downhill so to speak. So, that’s now a no go.  We did get a lead on some neurosurgeons in Springfield, Illinois, and we may even decide at some point to go to New York, Texas, North Carolina or Colorado, where there are supposedly specialists that are experts.  I honestly just cannot see spending that much money to go see a doctor, and then spending money on travel, hotels, medical expenses etc.  I know it’s my health, but it’s not worth it if we can find a good surgeon here, one that we trust to take of me, and trust to do the job that needs to be done. 

          More recently, my neck popped randomly when I was turning my head doing dishes last week, which caused me to see stars, and have pain shooting down my arms and back, and constant pain when trying to turn my head at all.  After two days of trying to treat the pain at home, with my pain meds, heat, ice, and rest, it wasn’t getting any better, so I finally called my neurologist.  Since it was the end of the day when I finally got a call back from his office, and he couldn’t get me in that day, the nurse said to go immediately to the emergency room. So, Shawn got off of work and off to the ER we went, where we sat in the waiting room for five hours since they were so incredibly busy.  They did finally get me back into a room, where I had a great little nurse named Abbey, I hope I spelled that correctly, who as it turns out, her brother has Chiari! It really is a small world when you think about it.  The great part about it is that I was able to raise more awareness for the Conquer Chiari organization, and at the same time the walk, all the while, gaining information about local doctors, and the possibilities of seeing a neurosurgeon in Springfield. So, fingers crossed.
Before I close, let me just say, that I don’t feel like I’m in such a dark place now, I am happy that I reached out to my loved ones for support, and to my doctor and therapist for medical help.  I feel more like myself than I have in a long time, I don’t know if it’ll keep improving, or if this is it, after all I’ve only been on the medication for two weeks now, but I think that anything that we can do to help ourselves, to preserve our peace of mind, is so beyond worth it.

Well I think that’s pretty much everything, at least everything I can think of at this time.  Yes, I know it’s been forever since I’ve blogged, and for those of you that have been concerned, I’m sorry, I truly didn’t mean to worry any of you.  I just needed time; time to process everything that I was feeling, time to really examine what was going on with me.  I had to have a two day neuro-cognitive test to check my brain function, memory, etc. I’ve had blood work out the behind, more new diagnosis, new medication, and simply trying to deal with everything all at once has been a bit much.  I guess I should really get used to it though, dealing with multiple diagnosis, unknowns, specialists, and stress.  It seems that even with all the happiness in my life, this is all going to be front and center.  So that’s it, that’s all the update I have for now, folks.  Hope everyone has a lovely evening, day, and week. As always, if you have any questions, please feel free to simply ask.


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