So with all this baby news I've been writing about, I realize I haven't mentioned much about my Lyme, or my health in general, in a while - so let's do that, especially being that that's what I started this whole blog for??! ;) I'll still probably add in some baby pics, since that's way more entertaining than a few pictures of my broken body.
As I predicted, having a little one has been hard on me physically. In the beginning, the CONSTANT nursing really put an extra strain on my back and neck problems. And then as she's grew older and bigger, it became even harder. I mentioned this before, but during the 8 weeks of maternity leave, she never let us put her down, so when I was home alone for most of that, I was either nursing her, sitting on the couch holding her while she slept, or walking around trying to calm her down from crying. It almost seems so long ago to remember the pain and toil, but I definitely recall shedding many tears because it was so physically and emotionally strenuous and draining.
On top of my old, and now exasperated, symptoms, I have been "blessed" with some new challenges as well - of which I had no idea were even a
"thing". The first is what has lovingly be coined as "Mommy's thumb" or De Quervain's Tenosynovitis, in technical terms. This is when the tendons at the base of the thumb become inflamed and constricted - often caused by repetitive motion. They call it Mommy's thumb, because of the way we have to use our hands and wrists to hold our children - and mine started mostly because of the cradle hold I was using to nurse. The pain is an intense burning sensation, and sometimes electric as well, that often runs from the thumb, through the wrist, and up your arm to the elbow. There were times I just couldn't pick my baby up because the pain was so excruciating, and a few instances when I even dropped things (thankfully not her!) because the shock was so terrible and, well, shocking! A lot of people only have problem with one hand, but I've had it in both. Thankfully, once she recently hit 6 months, it finally started to get better, to the point that now I only notice it a few times a day.
The worst postpartum symptom I've had is joint pain, which sounds like nothing, but it is pure hell - like rheumatoid arthritis on steroids. After googling this issue (because my OB didn't even seem to know much about it) it seems as though it's kind of a common complaint among new mom's, but perhaps most don't talk about it? It has to do with the hormone relaxin - which is what our bodies produce during pregnancy, which relaxes the pelvic muscles, joints and ligaments, and makes delivery easier. The continued elasticity after baby is born can lead to prolonged joint pain that can last anywhere from 6 weeks to 6 months (or after breastfeeding is over). I thought maybe mine was worse because of prevailing health issues, but searching the web, I found that many ladies have been in the same boat - describing the pain I've been dealing with to a "T".
Any time I have been immobile for more than a few minutes - or really anytime I sit or lay down at all - I can barely stand up or walk afterwards. My knees feel like the bones themselves are in a vice, and add all my extra baby weight on top of that, let's just say I dread getting up each and every time. I have to walk in little baby steps for the first few minutes because my whole body hurts so bad - because, for me, it's affected nearly every joint in my body. And most of the time, I had to do this carrying my baby with me. And stairs, those are the death of me! I don't know how many times I regretted moving my office upstairs last year. I've gotten to the point that I plan everything I do at work around having to make as few trips up and down the stairs as possible (which sucks, because obviously I could use the exercise!) Many online references equate this to being a 90 year old woman in a 20-30 year old body. A lot of women have gone to doctor after doctor, including RA docs, to find an answer to their pain and came back with nothing each time (that sounds familiar!) So thankfully, my research has helped me avoid another fruitless medical search this time. Luckily, I've started noticing a huge improvement in the last few weeks, so hopefully it will be a thing of the past soon enough.
So anyway, you can pretty much describe my postpartum health issues in two words EXTREME PAIN. Luckily, I have been feeling pretty decent otherwise. I'm obviously tired, but not really low on energy because my body is so used to getting 4 hours of sleep each night that I'm running on pure adrenaline each day. I've been told I will actually feel worse when I start getting more sleep again!
The only other thing that is really tough, is my lack of immune system. My daughter started daycare in January, and I think there have only been 2 or 3 weeks this year where she was completely healthy. I mostly blame the same snotty nosed kid (who is thankfully moving up to the toddler room in a few weeks, lol) as she has never not had nasties running down her nose, and is always "picking" on Brynn (as the teacher says when she is telling the kid to stop). There always seems to be someone sick in my family when we visit as well, so we've brought colds home at least twice already from them as well. And of course, I always get what she has, so we're both miserable together. Her 2nd month in, she caught a nasty flu bug - poor thing. Thankfully, I had it way worse than her, and was puking for 24 hours straight. I haven't been that sick since I was a kid, and it was awful! I read that at 6 months is when their immune system is at the lowest point in their lives, so I'm looking forward to when that's increased by the end of the year! Because I also can't afford any sick days at work!
Now for a doctor update - as many of you have been inquiring about!
In February we made a family trip to Idaho to see Dr. Smith, my Lyme doctor. He checked baby girl - and to my relief, told us that he wasn't finding any sign of infection! But he also said to bring her back again later for a recheck, to be sure, so we aren't totally in the clear - but I was still happy to hear this news. As for me, he didn't find any of my old infections - so more good news! I have still been having major sinus issues, so he checked that out and found that I have a mildew allergy. I think there is more going on there too though, because my sensitivity to pollutants is still incredibly high. He also found Lyme Virus E in my joints (no wonder my poor joints have been so miserable lately!) as well as a new virus that was just discovered called TBE in my brain. Lastly, he discovered Epstein Barr Virus in my blood and spleen. Some pretty significant findings this time around, but I still really feel like Dr. Smith is the answer to taking care of my Lyme, just a little bit at a time. I told him that my newest pain specialist (who I will talk about shortly) was convinced my problems are stemming from Lyme. He checked my back and body, yet again, and told me that he really feels it's something else, as he still could not get a read on any sort of infection or anything else going on there. So while I was happy with the visit, overall, I left still confused and frustrated regarding my pain. My western med doc thinks it's Lyme and my Lyme doc says it isn't! It feels like a never-ending tug-of-war. I really don't care who wins, I'm just sick to death of the game.
Fast forward a month, and I paid another visit to the newest Neurologist who conducted an EMG (a procedure to assess the health of muscles and the nerve cells that control them) and ordered another MRI of my lumbar spine (which is about the 4th MRI I've had of my back since this whole thing started). This time, though, I got some answers. The results of both tests matched up perfectly to show that I have nerve impingement in several places between my L3-L5 and L5-S1 which, he said, could be causing my pain as well as my neuropathy. He ordered a round of physical therapy and a steroid injection - which when I told him my pain specialist would not do the injection because he didn't think there was anything wrong with me - he flat out called the other doctor stupid, and assured me that now I had proof to show him. Why can't all doctors be this good? He also has a new pain medication that I could try, but I will need to wait until I'm through with breastfeeding.
So onto that pain doctor I mentioned.....I first saw him in January, and was so elated to finally have a local specialist who I didn't have to travel hours and hours to see! I sat in the waiting room for over two hours (horrible, but still better than sitting in traffic!) where the optimistic side of me gathered that he must be a thorough doctor to take that long with his patients. I wasn't completely wrong. Once I got in, we spent over an hour talking about my long medical history. He was attentive, receptive and understanding. But then I made the mistake of mentioning my Lyme disease. I'm finding that for many (in fact, most) doctors - this word is like a red light for their work. I believe the bottom line is that they are too afraid to be associated with it in any way, shape or form - either because they don't know enough about the disease, or because they've seen people actually have their license stolen out from under them for helping Lyme patients. A few years back, I called an Olympia neurologist for help, and as soon as I mentioned the Lyme, they told me "we don't treat pain." YOU'RE A NEUROLOGIST AND YOU DON'T TREAT PATIENTS WITH PAIN?" Give me a break.
Anyway, I digress. This doctor did the same kind of thing. He reasoned that I was simply "living with the pain of an old person at a young age" and also noted that he thought my problems must definitely be Lyme disease. When I got home, I realized that his "thoroughness" wasn't so thorough. Yes, he read through and talked about my history. But he did nothing to think for himself. The MRI report he looked at was from 2 years prior - and obviously from my previous paragraph, there were notable things to find if he had thought to order a new one. Instead, he gave up and told me that I was probably just going to have to learn to live with this pain for the rest of my life.
Fast forward to the beginning of May, shortly after my neurologist appointment. I went back in, excited to prove that there was something wrong with me - and you better believe I put this guy in his place! First he started asking questions about how old the baby is, which I thought was just small talk. I said, "6 months already!" and he stated, "oh that's not too far along." or something to that effect. His proceeding questions confused me even more, until he said, "have there been any problems with the pregnancy?" His assistant and I both looked at him like, "are you kidding me??" and very coldly exclaimed, "I'm not pregnant." I have to say, the "oh crap" look on his face was priceless. Then he asked about the Lyme disease. I told him, "I see a doctor in Idaho, but I'm not here about the Lyme disease." He proceeded to ask which doctor, and when I said, "Dr. Smith at Lymestop" he threw out all these "jokes" about how the guy must be a total quack. He even had his assistant pull up the website so he could see what a "crock" it was. I said, "well, so far he's made a huge difference in my symptoms and has been the only one to do that!" and he replied, "well all you need to do is take antibiotics for a few weeks and you should be fine." Keep going doctor, I thought, you're really doing a good job to piss me off today. The look on my face must have made him realize I was ready to talk about what I was actually there for.
She may turn out to be a firecracker like her mamma has learned to be!
I had gone to the time-consuming and frustrating length of getting the images of my recent MRI in my hands, but this doctor wouldn't look at the CD
at all, simply because he (and I phrase his son/assistant here) "doesn't like to". Wow, I wish I could not do parts of my job simply because I don't like to! Unfortunately, the hospital wouldn't send him a written report either, so he just chose to flat out ignore the visual proof. I told the doc that my neurologist wanted me to get a spinal injection, and he claimed, "oh, I love injections!". I said, "oh really, because the last time I was in here, you told me you wouldn't give me one." He looked perplexed and said, "I wouldn't ever say that, why would I say that?" And then I quoted what he told me about living with "old people" pains. I have to admit, I was a flat-out bitch - and I think that's when he finally started taking me seriously. He ordered the round of injections and helped me with several other things I had asked for as well - at that point I felt like I could have asked for the moon and he may have given it to me! Overall, it was a pretty successful appointment once we got past the BS.
My first injection was a few weeks ago. It hurt way more than I expected! They told me that I would be numb and feeling good for the next 1.5 hours or so (and then worse than normal) but that never happened for me - I was hurting all day! However, the next day I woke up and felt fabulous! For the first time in forever, I felt pretty normal. Walking and daily activities were relatively easy. I could climb the stairs at work with ease and pick up my baby without too much pain. It was AMAZING! But then by that night, when I was leaning over the sink (washing all those bottles!) the pain set back in - and it was quite awful. For about a week, it was a little worse than it usually is, and I thought, "one more thing that works for other people but not for me." :( I have to say though, it has gotten a bit better over time. The pain is still there, especially in certain instances, but I'm definitely able to move a bit more than I was before. There are two more injections to come in the series, and I'm hoping the pain will progressively improve with those. If it doesn't work, the next step is some sort of implant (yikes!). My next injection is tomorrow - wish me luck!!
