I'm new here!
Hi, my name is KimNakoff. I’m new to The Mighty and look forward to sharing my story.
Hi, my name is KimNakoff. I’m new to The Mighty and look forward to sharing my story.
Last fall I bought a used scooter. It was a really big step for me accepting my disability. The past two weeks our weather has warmed up and so I’ve been getting a lot of use out of the scooter. It’s been such a freeing thing to be able to say “let’s go for a bike ride!” I might be exhausted but getting onto the scooter and following after my kids is possible and I love it. I still struggle with identity but I will always remind myself that this is a gift I can’t take forgranted. I don’t want to spend my motherhood indoors afraid of trying to go out with my kids because of how much pain and exhaustion it causes. This year I’m ready to get out.
Tell me how you’ve adapted life for parenting with a disability. #ChronicPain #ChronicIllness #RheumatoidArthritis #MarfanSyndrome #TarlovCysts #SpinalCSFLeak #pseudomeningocele
I’ve been awake 1.5 hours - which is about 3 hours earlier than I normally wake up. This week I’ve been waking up in enough pain that it can’t be ignored while I drift back to sleep. I’ve also been falling asleep hours earlier than normal because my exhaustion won’t allow anything else. As I wait for my first rheumatology appointment in 4 weeks I can’t help but wonder if this is my new normal or if this is a slight curve in the road. My chronic illness journey has been more about new normals than slight curves but with every change I still cling to hope that the road will curve back to what I’ve already adjusted my life to.
The pain in my ribs with every breath, the intense perceived burning of my skin on my legs, back and side, the bone aches and joint stiffness, the abdominal aching from the pinched nerves in my spine, the 24/7 headache from low CSF levels - they wreak havoc. My body seems to be exploding with these useless sensations - they aren’t telling me anything new. My body is not in great shape but their constant nagging cannot change that. The unpleasant sensations meant to warn me of danger are only telling me what I already know and what cannot be fixed. It’s a special kind of torture - chronic pain - one that I must learn to accept, acknowledge and learn to ignore. #ChronicPain #RheumatoidArthritis #MarfanSyndrome #TarlovCysts #SpinalCSFLeak
Just for today, I will wallow in my pain. Just for today, I will allow myself to think about it. Just for today, I will not pretend that I am okay. Just for today, I will honestly say that it’s really okay to not be okay.
It started over ten years ago when I was pregnant with my second child. I would get shooting pains down my left leg and buttock. Once while at work, I remember my coworkers thought I was going into labor because I was walking towards my patients’ room, and all of a sudden, I got a shooting pain in my left groin and buttocks that literally stopped me in my tracks. I asked my OBGYN about these weird pains, and she said it sounded like sciatica from the extra pressure of the baby, and it would get better after I delivered.
I delivered my son, and the shooting pains did subside, but over the next year and a half, I started noticing lower back pain, a constant dull stiff kind of ache. It didn’t bother me much unless I sat, walked, or stood too long. It was easily relieved by changing my position and taking Tylenol. After a while, I decided I couldn’t keep taking Tylenol for the rest of my life, so I figured I needed to heal my back. I also had diastasis recti from pregnancy and knew that I needed to strengthen my core. The idea was to start an exercise program to strengthen my core, and by strengthening my core, my back wouldn’t have to work so hard, and maybe the pain would go away?
I chose yoga! I was initially focused on core strength, and I began doing planks, arm balances, and all kinds of challenging poses. I ended up injuring my shoulder a few times because I lacked core strength and my alignment was off. I had no business as a self-taught yogi trying to do advanced poses. At this point, I decided to take a more gentle approach and started looking into restorative and therapeutic yoga. I had found my niche! I loved Iyengar yoga because of the focus on alignment and therapeutic approach. Just doing a few poses a day cat/cow, mountain, downward dog, tree, warrior, I started to notice my back pain was better. I no longer had to carry Tylenol everywhere, and I could sit, stand, and walk without pain!.
My back didn’t bother me for years; I think because I did so much yoga. By so much, maybe 10-15 minutes of a couple poses a few times a week. I was also very intentional about my posture during the day. But then things started to get crazy again a few years later. I got diagnosed with lupus and couldn’t do the level of yoga I was doing before. I began to notice standing poses would exhaust me, my knees and hips would hurt, and it seemed almost any pose caused that sciatic and low back pain to exacerbate. Driving also became an issue. My 1 hr commute to work would leave me limping from my car. My hips and low back would get so sore just from driving to work.
Since yoga was causing me issues, I turned to Yoga Nidra, chair yoga, and walking. But with walking, the same thing would happen, after about 10 minutes or so my hips would hurt, especially the right hip and I’d be limping, my knees hurt and felt like they couldn’t support my weight. This was when I got nervous because I thought I developed avascular necrosis. I told my rheumatologist, and she ordered Xrays. My hips looked fine on Xray, but she was concerned about my sacroiliac joint. It showed some irregularities,so she ordered an Xray of the SI joint. This Xray then showed both my SI joints had what looked like inflammatory changes. It also picked up “transitional vertebrae”. She orders an MRI to rule out active inflammation because she was concerned I had ankylosing spondylitis. The MRI was fine… it showed the same damage to my SI joints but no active inflammation. The MRI also confirmed Bertolittis syndrome and picked up Tarlov cysts. I was then referred to a sports medicine MD and physical therapy. This is where I am today, awaiting my appointments while dealing with this mildly annoying low back pain and difficulty walking, sitting, and standing. I thank God the pain isn’t severe and that I don’t have another inflammatory condition.
At the beginning of my back pain journey, I knew something had to be wrong, but I also knew that the options for me would be medicine and/or surgery, and I didn’t want that. I knew yoga would help, and it did. Most of what I’ve read so far about Bertolotti’s syndrome and tarlov systs recommend surgery, and most patients have a lot of pain. This leaves me to wonder if yoga has kept my pain from getting severe? Will I need surgery to get rid of the pain ultimately? Will it get worse if I don’t do surgery? Have I been harming myself with my own self-prescribed exercise regimens? To be continued!
I had to attend a state funeral on Friday that lasted all day, as my husband was part of the main party. Saturday our children and grandson were in town as our grandson was to be christened on Sunday. We ran errands during the day, and then went to a lovely dinner hosted by a dear, dear friend so I didn’t have to do a dinner. Sunday was so lovely. The baby behaved beautifully, his reception went well, as did the luncheon afterwards. We bid farewell to all last evening and I collapsed into a heap.
I know. I did enough for 6 people, as my husband reminds me.
I don’t mean to whine- and I know to this group I’m not really - but even with careful attention to pain meds and resting I am way behind my pain curve. I can work on that. But what scares me is I have never felt my legs feel so weak. I’ve spent the morning in bed resting.
I don’t have a complete diagnosis. No one clearly knows what’s going on with me. It all started with an accident in 2009 that caused an annular tear at L5. I received an epidural with the mold contaminated steroid but didn’t contract meningitis. At the time of the injection, before anyone knew about the mold, I was acutely ill for a week with a severe headache. In 2011 I had an L5S1 ALIF with less than optimal results. Since then I have been in continued pain management diagnosed with CRPS and migraine. I have a Tarlov Cyst, but everyone seems to think they are asymptomatic. I don’t think mine is. Now there is question of MS and cervical spine involvement. I have to walk with a walking stick. Most of my doctors are surprised I am still walking. Gut strength. I won’t quit! But today, I’m so out of spoons…