I'm not sure where to start with this one. I haven't had time to keep up with using my usual outlet (for obvious reasons, aka being a parent and having no "me" time). But I also don't have anyone that I can talk to on a regular basis about my woes, aside from my husband, who is just as sick of hearing about it as I am of dealing with it. So I figure it's time to write again. (To be honest - I've been working on this blog for several weeks, a few minutes each day, if that - I apologize if it ends up all over the place!) Good thing I don't have any die hard blog followers waiting for my next entry! ;)
So yeah - I'm really not doing so well, and haven't been for months. I mean, I haven't been doing well for years, but this is a little different. It's safe to say that I'm more physically and emotionally depleted than I ever have been before. I'm not sure how it's possible, since I now have a baby who is the light of my life and brings joy to each and every day, but I feel the most discouraged, most depressed, and the most hopeless that I ever have. Every single day, I feel the need to cry - and sometimes I actually do. Over the last few months, I've had 4 people ask me how I was doing health-wise, and I broke down in tears each time. Like, sobbing, ugly, I-can't-make-them-stop kind of tears. To my boss. And my hair stylist. Both of whom I consider friends. But still. Each day, I make an effort not to think about what I'm going through, or else the waterworks start to emerge.
So to avoid more embarrassing moments, I carry on as if I'm just a normal person with a normal life. Although it's honestly more than just trying to avoid the humiliation of breaking down in public. It's because I know people are tired of hearing of my struggles. It's because absolutely no one that I'm around can understand what I'm going through. And mostly, it's because I just HAVE TO. I have to make money to help pay the bills, I have to help take care of our daughter - to be a good mother and wife, and I have to LIVE - even though the simple act of getting out of bed and going through day-to-day motions are absolutely killing me.
I guess I'll rewind back to my last blog. I had just had my first injection, and the next two rounds were coming up soon after. Probably what makes how I feel at this point in time the worst is that I had an AMAZING day after that first needle entered my body. It wasn't just the simple fact that my pain had significantly improved; without that pain, I had more energy, more happiness, and finally, FINALLY felt like my old self again. I honestly am sitting here in tears just thinking about it, because I miss my old self so damn much. Even though the relief only lasted a day, I did have hope that the other two rounds of injections would also bring positive effects and that I would get to see more of the old me. Only they did nothing. Nothing at all.
I've been back to that doctor's office twice now, of course with a different doctor each time, hoping that they would have another solution for me. During the first visit, I was told that I could not switch medications - even though my body is so used to the current prescription I can hardly tell that they are helping. The doctor also decided that it would be best to refer me to a neurosurgeon. (And because I'm pretty sure surgery could be a reason that I got into this mess in the first place, I have unabashedly ignored those follow up appointment calls since). The most recent visit left me face to face with my least favorite doctor there, who incessantly pummeled me with stupid question after stupid question, and suggested that I attempt all the things I've already tried (yoga, chiropractor, acupuncture etc.). I would stop going to see them, except that in order to continue getting my prescription filled each month, I have to take time out of my busy life to prove that I'm not a drug abuser by paying them an obligatory visit and an extra $170 just to pee in a cup. Just today (right before two huge events and leaving town for my brother's wedding) I got a phone call that I needed to come in for a "random" test - even though I was just there two weeks ago and have been an exemplary patient. This place just keeps getting more and more ridiculous.
So about that pain. I feel like I need to clear the air a little because I have so many people that have asked me about my "back pain" or told me that they know what I'm going through because of their back. Let me tell you - this is not a run of the mill back issue. As horrible as I know back pain can be, and not that I'm not sympathetic to those who do have it, I truly wish that's all it were. Indeed it is one of my symptoms, but it's about 20% of what I'm dealing with. I've talked about my "normal" pain in my blogs before, so I won't go too much into the excruciating details there - but I will say that it runs through my entire body and has been nothing short of a 5 year nightmare. It's like my body is a rubber band that's about to snap and that's been run over by a truck one too many times. When I try to explain this "tightness" to doctors or therapists, they tell me to try "stretching". Only that makes it worse. I had to stop Yoga because it was so painful. The more I walk or stand (or stretch), the tighter and more painful my body gets. From my neck to my hips and all the way down to the bottoms of my feet, and my shoulders all the way to my fingers. When I simply touch my body lightly - anywhere - I feel a deep, searing pain. If there is anyone out there, anyone at all, who has any inkling of what the HELL this is, please please let me know - I'm so desperate for an answer!!
And anyway, now on top of that, I have something "new" that is so much worse, if that's even possible. After I had little B, I was hit with the most awful joint pain you could ever imagine - due to what I thought was the relaxin/hormones. Even reading the last sentence back to myself sounds like nothing compared to the true horror that it is. In fact, I don't even know if this IS classified as joint paint - that's just the closest thing I can relate it to. Every single body part - from my fingers down to the bottoms of my feet hurt SO MUCH, and all the stinking time! Not just in my joints, but everything that connects them as well. I honestly dread any time I have to do anything other than lay on the couch. Stairs kill me, standing up is dreadful, walking is horrid, and waking up in the morning or trying to move after any time I've been immobile for a while is one of the worst things I've ever felt. I literally have to hobble, hunchback style, because I hurt so bad. My wrists feel broken, my thumbs feel sprained, the bottoms of my feet feel bruised, my knees feel as though someone is crushing my caps into a vice, all my bones feel like they are hanging out of their sockets, and every single muscle seems swollen and inflamed.
All I want to do is lay down, all the time, but unfortunately, I don't have the luxury of resting anymore. My days start in the 5am hour, where even though I can hardly walk or grip anything because of the pain, I have to pick up my 23lb daughter out of the crib, prepare her food for daycare, get her dressed, feed her breakfast, and chase after her for several hours as she never stops moving, in a continued attempt to get into everything she isn't supposed to. ;) Even getting myself ready for work is a huge challenge - everything is just HARD. I have to take breaks throughout, and doing things like changing my clothes, taking a shower, and lowering myself into my car, (really everything!) is an absolute killer. By the time I leave the house for work, I'm exhausted beyond belief. My work days are often stressful and tiring, and painful at times as well. I minimize my stair trips as much as possible and I grin and bare it (although I don't think I'm very good at the grinning part anymore) through everything from sitting in my chair all day long to working a 12 hour event day (or two or three) on my feet. By the time I come home to play with the baby and get her ready for bed, wash all the dishes and bottles, and cook dinner - I can barely put one foot in front of the other because the pain is so horrendous and escalated.
I rush home from work every day, just to get to see my girl for a small amount of time before she goes to bed. Even though I hate that we barely get to spend any time with her during the week, I also really look forward to that 6pm bedtime, because it is the only part of my day that I can relax and try to heal by doing next to nothing.
I feel the same way about my weekends - I look forward to, and dread them, all at the same time. I obviously cherish the moments I have with my little and my hubby. But the two days where my daughter isn't in daycare are difficult beyond belief. Everyone who is a parent knows it's non-stop exhausting work raising a kid (or kids!). But I can't even put into words how hard it is with this never-ending, debilitating pain. Without much break time, I'm pushing myself way past my limits all weekend long. When I do get a break - even though I should rest - I often find myself doing household chores instead, because, you know, the house isn't going to clean itself!
Before I had a baby, I barely had it in me to venture out of the house to do anything. Now, all my energy and strength goes towards raising my baby. So you can imagine that I most definitely don't have it in me to leave the house really at all anymore. I barely have the strength and energy to get ready for the day. And in fact, aside from a very quick trip to the beach over this last weekend - which I was determined to make happen - I can't remember the last time I left my house other than for work (or groceries, which I push myself extra hard for). I knew that the baby thing was going to be a game-changer, but it's been a lot more difficult than I had even imagined. It used to be that after a big event day (or days) at work, I would need at least 2 days to somewhat recover, which would encompass laying on the couch the entire time. Now, I obviously don't get that option. It's a never-ending go, go, go all the time - and I feel like I'm on the verge of having a complete and utter breakdown because of it.
Don't I look happy in this picture? Well, I am! Because I'm with my family and I'm on the beach - one of my favorite places in the world!
But behind my smile is ton of pain. Packing for the trip, being in the car for hours, hiking into the oceanfront, setting up the tent,
sitting without a back support...just a few of the things that pushed my body past the limit that day.
God gifted us with a very spirited, rambunctious little girl who cannot stand to sit still, even for one second -which is a bummer only because I was always so excited to have my own little to snuggle with one day - but I also love watching her little spirit, full of energy and happiness with life. The only thing that's harder for me than the pain itself, is thinking ahead to the future, and the possibility that I may not be able to provide the fun life that my daughter deserves because I can't bring myself to leave the house or do any activities.
The worst part is, I'm still no where near finding an answer or a solution. I do have an appointment with a new naturopath, who recently moved into the same lot as my work building. Not knowing what else to do, or where to go next, I figured maybe it was a sign that this placed popped up right when I was needing a next step. We conducted a doctor/patient meet and greet a few weeks ago, and she assured me she wasn't scared of my case (even though the fact that she thought of saying that seems a little telling??) and that she can't promise that she'll be able to help, but she's willing to give it a try. I told her a snippet of my history and she mentioned things that already made me happy enough that she wasn't just blaming my pain and other problems on structural issues: immune system, hormones, adrenals, inflammation. So we'll see!
But I still also keep coming back to the Lyme. I've heard so many times that the disease gets better during pregnancy, and much worse after, and that is exactly what's happened with my pain. Even though my Lyme doctor swears it's something else, I just can't fathom why I'm having issues with my entire body, and why no other doctor can figure out what's going on. So if the naturopath can't fix me, I will probably make another trip over to Idaho to get checked at Lymestop one more time and pray that he will find something that he couldn't before.
Anyway, as we just surpassed a three day weekend, I think about how joyless I've felt, for so long. Really nothing gets me excited anymore, which is super sad. Holiday weekends, and even times that I get to be with my family who I love dearly, just don't get me as stoked as they used to. Because everything has gotten to be so difficult and painful for me, even the best days of the year are an excruciating chore. And I know what some of you are thinking, because I've been told it many times before: "you still have a lot to live for," "think of the positive things," yada, yada, yada. Yes, I am blessed by many things, and I know that. I also know that there are people out there who have been dealt an even shittier life than I have. Even right now - all the people who are dealing with devastation from fires and hurricanes - I can't even imagine! But I still just can't help the way I feel.about my own struggles. As much as I try to fight my anger, sadness and bitterness, it's getting harder and harder to not let those things overtake me. Going to doctor after doctor after doctor for years and years, spending all your money on medical, missing out on having any kind of social life or friends because it's much too difficult, and pushing yourself way past your limits each and every day to do the simplest of tasks....it just zaps the life out of you. I hate to say this,but healthy people just have no idea.
The hubby and I were binge watching a show (because that's what we do now - sadly, even the SO's of the sick have to succumb to having no life) where the contestants had to attempt at matching their life priorities with their partner - family, love, travel etc. Almost every single player rated health as their last priority! This astounded me, and also made me realize just how much people take their well-being for granted. Joni Mitchell (or Bob Dylan and loads of others who covered) said it best:
"Don't it always seem to go That you don't know what you've got til its gone"
For me, paradise was my health and the parking lot is my disease, and I would do ANYTHING to get my paradise back.
So I guess I say all this, not for you to feel sorry for me, but for anyone who is reading this who is healthy, to realize how good you have it. And to have more compassion for those who are sick. Even if it seems as though they are better. To remember that just because someone is seemingly getting through their day just fine, doesn't mean that it's slowly killing them inside. And for anyone who is reading this who is also sick - well I'm not going to tell you to keep your head up, because I myself know that 10 years of hearing this is annoying as hell. But I will say that you're not the only one, and I'm here to talk to if you ever want to reach out and chat with someone who truly understands the horror that you're going through.
There's got to be more than this. There's got to be an answer or a fix. And as hopeless as I feel, I'm still holding on with all that I have. For my husband, for my daughter, for me.
