October 29, 2020
Warning: This post is a book. A literal book. But I was writing it in my head all night and was with me when I woke up this morning, so it is being written. It doesn't need to be read, but I do need to write it.
Every day begins with pain. Every. Single. Day.
It wasn't always like this. Until my youngest son was born, I woke up like everyone else. Some days refreshed, some days still tired, but blissfully unaware of the miracle of waking up without pain.
Chapter 1: First to go are the feet...
I don't remember the day it started, but I remember that it never went away.
My youngest son was born when I was 42. He was the youngest of my four and I was healthy and it was an uneventful pregnancy - if you don't count the kidney stone attack that landed me in the hospital when I was 8 months pregnant. His birth was completely fine - normal with pain and uncertainty - but nothing to distinguish it from my other three uncomplicated vaginal deliveries. I was extremely blessed. Tired, but blessed.
I remember the night I couldn't walk to his nursery for a feeding because of the pain in my feet. I had no pain until I set my feet on the floor, then it felt like my feet were encased in a bubble...a bubble full of nails. They felt so swollen and the pain from trying to stand was so bad that I literally crawled to my son's crib to nurse him that evening. Or morning. I can't recall, because he nursed round the clock at first. I thought it was something related to postpartum. I had no idea what was wrong and I didn't know who to ask. I just know that from that day to this, every time I put my feet on the floor after I wake up, it is excruciating.
...then the hands...
A year later, my mother passed away from non-Hodgkin's lymphoma after a battle of several years. The stress of her death along with dealing with my babies took its toll. A few months later, my hands went wonky. The base of my thumb joint hurt so bad I couldn't take my wallet out of my purse. It was scary, but I remembered that I had a great aunt on my mother's side that had disfiguring rheumatoid arthritis, so I thought it might be related.
...now throw in everything else...
And somewhere along the way, I began to have a fatigue I had never experienced. Like having the flu...the joint aches and pains and tiredness and sometimes a low grade fever. Tiredness down to my bones that sleep didn't help. So tired that I wasn't sleeping but had to lay completely still and could only listen to the TV. It took too much effort to open my eyelids or raise my head. I couldn't. I just couldn't. On those days, my husband was a saint and took over taking care of the boys. There were days I was just "gone". I didn't dream, I didn't sleep. I wasn't depressed. I wasn't thinking or feeling anything. They are just lost days. I've told more than one person that I am convinced that is how it feels to die. I feel like I am dying. And I am not being dramatic.
So...not surprisingly...off to the doctor I went.
But surprisingly, I didn't have rheumatoid arthritis. I had markers in my blood for lupus. Damn. That was the beginning of my life with a rheumatologist. A wonderful doctor, thank the Lord, but a rheumatologist at 43? I was always the youngest one in the waiting room. I didn't have quite enough markers and symptoms to get a full Lupus diagnosis, so I got the unpronounceable diagnosis of Undifferentiated Connective Tissue Disease. Or UCTD for shortness and for sanity. (I also found out I have hypermobility syndrome...we'll circle around to that later.) It was real. I was put on treatment. It helped with the pain and fatigue and my life went back to normal... for while.
Chapter 2: Next in line is my back
I don't remember much about my hands and feet after that because when my youngest was three, my oldest grandchild was born. It's a crazy story for another time, but suffice it to say I loved her and her mom - my oldest - dearly and it was a blessing. I started babysitting her when she was 7 weeks old. I was 45 and raising 3 and 5 year old boys and a newborn granddaughter.
My body starting yelling at me. I had always been blessed with a strong body that didn't reveal my age and I was fully convinced I would never really age. At 45, my husband and I finally decided that we didn't want to have anymore children...but I could have and would have, if we had wanted. I felt invincible.
Somewhere in late 2008, when my youngest was 4, I started having back pain. Of course, I had had normal low back pain for years from lifting two large toddler boys and adding a grandbaby with a car seat aggravated it..but this was something different. When I moved into certain positions, I would get a new, electric and searing pain down my left leg. It was a new and disabling pain...so I got a new doctor. A "sports and spine medicine " physician ..and shortly after that, a neurosurgeon. Migrating lumbar vertebra. No trauma, no reason except normal wear and tear ..and they were moving and pinching my spinal cord. I did regular scans through the now-familiar coffin-like MRI machine - and my vertebra kept moving. Because of my hypermobility syndrome, my vertebra were LITERALLY falling off my spine. Did you know they can do that?!?! It continued to get so bad that I spent most of my waking hours off my feet in a recliner, on pain meds, and unable to care for my baby granddaughter. I had to fix it or I'd end up bedridden.
I had a spinal fusion with stabilization. Seven hours on the operating table, fileted down the back like a fish. It was a miracle. I was left with some nerve damage on my calf and foot on my right side with a little foot drop on the side, but I count that as a welcome trade-off from the disabling pain I had.
The heartbreak of it all is that it can't be fixed. It can only be stabilized from going further. So my back will never be "fixed", I'll never be able to stand or walk without some form of discomfort and after 30 minutes or so of standing still, I MUST sit down or move because the pressure of my vertebra on my spinal cord just cuts me down. And sitting? If I sit too long, it puts pressure on my lumbar surgery site and the pain just magnifies until I lay down or medicate.
I put in time in physical therapy, adjusted my routines and learned to accept help from people - a skill I desperately need to learn and thankful that God gave me the opportunity to do. But I did mourn...I would never be able to do things that came so easily before. My entire life I had been flexible and strong and could run and dance and bend effortlessly. Now I can't touch my toes without serious effort and I wasn't able to run at all until almost 10 years after the surgery. Thankfully, I can still do some types of dance...but that's a happy story for another time.
Chapter 3: Just because it's secondary, doesn't mean it's not Fibromyalgia
Two years after I began taking medication for my UCTD (ironically the "miracle drug" that Trump touted for COVID was a miracle for me for a couple of years for this lol), I started having a weird problem. My knees started "dislocating".
Now, this is weird because knees aren't a joint, so technically they can't dislocate. But that was the only word I could find that describes the sudden, overwhelming feeling of my lower leg bone being twisted apart from my upper leg bone. It happens when I bend my leg to the side, like sitting crosslegged or crossing my legs with my ankle on my knee. Sudden. Unbelievably painful. My first visceral reaction is always a very loud scream, usually involving the F word. As in WTF? Only straightening it and hopefully having someone pull the leg straight again seems to stop it.
None of my doctors knew what this could be. I resorted to doing something I would do many times over the next few years...googling my symptoms. And I came across something surprising. One of the rare side effects of Plaquenil are "muscle weakness in the lower extremities together with diminished tendon reflexes". That was the only thing I read that could explain it. My rheumatologist thought I was crazy, but I went off the medication..and my knees improved. They've never gone back to the same strength they were, but they improved enough so I could stop worrying about inadvertently cursing in public. But there go the meds for the joint aches and debilitating fatigue.
I still miss them.
Now I am left with what is termed "secondary fibromyalgia" caused by my initial UCTD. Ironically, my blood levels normalized a couple of years after my initial diagnosis and I am technically "in remission" from the connective tissue disease, but it has left me with it's evil twin, fibromyalgia.
Fibromyalgia is technically "is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues." In short, it sucks. The good news is that it is becoming an accepted diagnosis in the medical community. There bad news is that there is no "test" for fibromyalgia. It is determined by process of elimination and lucky me won the elimination lottery. I thank God regularly for my rheumatologist who validates me on this and reminds me that there is also no test for migraines, but we acknowledge them, so we should do the same for this. Bless his heart.
There is also no "cure" for FM. The experts don't know what causes it, don't understand it and don't agree on how to treat it. We mainly treat the symptoms and hope for the best. And learn to renegotiate our life and lower our expectations.
We know we can't do what we used to do.
We know that our pain is everywhere and has no cause.
We know we get tired after doing one or two "normal" things a day.
We know rest won't help us.
We know that only those who have this "get" it.
We know this isn't fair ..and it doesn't matter.
We know it's not just in our heads, because if we didn't have it, we could do all the things we love to do ..that we can't do now.
Chapter 4: Migraines are not just a headache
I never had many headaches in my life. I hardly needed Advil unless I had a hangover or the flu. Then these started when I was in my late 40s, right around when perimenopause was rearing it's ugly head.
I remember the first time I vomited from a headache. The pain was ungodly, then the dizziness and vertigo ...and then I just had to heave. It didn't really help the headache, either. It truly is hell. I couldn't keep any pain meds down and I was blessed that a friend with migraines had an extra suppository I could use. Which saved the day. But it wasn't the last one.
So now I have migraines. I don't have auras and I don't know what triggers them yet. I have theories. They hit on days the weather is changing. I hate stormfronts. Lately I found that rolling my neck forward releases the tension in my neck that begins the migraine, so I'm starting to think I have cervicogenic headache, which would go right along with my other spinal issues. Yay.
The worst is waking up with one...the day is lost. I am so thankful that Sumatriptan works on my migraines, but I usually don't get to them early enough. Every time I'm optimistic that this isn't a migraine headache, but sinus or stress, and and medicate and treat for that first. Heating pads, yoga, Advil, hot compresses. Then and only then I resort to the Sumatriptan. And when that doesn't work, I briefly understand why people with disabling headaches sometimes shoot themselves in the head. I do. It's not a life.
The only good part of disabling pain is the moment the pain retreats and you are left with a new and beloved appreciation of life without pain. For the moment. And you're incredulous that you didn't appreciate it when you had it all the time.
Chapter 5: Lyme disease? Really?
Had a bad spring in 2019. Got bloodwork back that said I had been infected with Lyme disease previously. Took the prescribed antibiotics. Still feel crappy. Enough said. Just add it to the list.
Chapter 6: Mental illness is not just in your head
Mental challenges run in my family. My brother had bipolar disorder and my youngest daughter has some type of disorder that was tentatively diagnosed as either bipolar or borderline personality disorder. My maternal grandmother had worries..today she would be diagnosed with generalized anxiety disorder. My youngest son was just recently diagnosed with that.
That's what I have. I also have felt depressed on and off since I was a teenager. I think I survived without official treatment most of the time because my anxiety would pull me out of my depression lows and my depression would kick in when my anxiety was off the charts. I don't react to alcohol or recreational drugs well, so I am thankful at least these crazy mechanisms kept me from reeling out of control and I just zigzagged through life until now I'm too tired to zig very much :)
Since I have had to accept that medications make my life manageable, I've tried countless types of antidepressants and mood stabilizers. They've all ended with giving me side effects from high blood pressure, insomnia, and weight gain to hallucinations (Cymbalta made me think the room was going to eat me). No dice on those. The only thing I can use at this point is an antianxiety medication when my nerves are cranked up to 11. They bring me back to normal and I can function again. I thought they were silly when I was in my 30s and now I can't imagine what my life would be if I didn't have them when I needed them.
I can't take any medications daily. After a few weeks, I have every side effect in the book. One doctor told me I may have a metabolism that processes the medications so slowly that in effect I end up with an overdose when I take it daily. I think that may truly be my problem. So for now, I don't take anything but the essentials when I need them.
Chapter 7: Menopause is not for Sissies
I finally finished this year. It sucks. My body is no longer open for any babymaking business and I'm glad, because at 59, it had no business being in that business anymore.
It's been 10 years of hot flashes and migraines and craziness. Most of it has eased up except I don't know if I'll ever be in charge of my body temperature again. I may have to dress in layers and accept feeling like a furnace is spontaneously burning inside me for the rest of my life. I miss having skin that didn't look and feel like crepe paper. But I made it through and came out the other side.
Nuff said.
Chapter 8: Taking care of it all
I have reached the point where I could go to a different doctor every week and just rotate them and never be done. I have incidental issues like kidney stones with back pain and bleeding or stomach aches and intestinal issues which need be taken care of and tested ...
..and I'm just too tired to do it now. I'm still working half time and after that, I'm too tired to have the mental energy to organize all the appointments and tests and treatments. Not to mention two teenage boys still living at home that need care and treatment for their issues and maintenance (dental cleaning is not at the top of my list, but needs to be done, right?)
I think that's the scariest part. Being too exhausted and pained to figure out how to treat the exhaustion and pain. That's where I'm at now.
Epilogue
Thanks. I'm done. This is all that's in my head today. I don't know if anyone will make it this far and that's ok. I do hope that after I'm gone my family might find this because they were with me every step of the way and I couldn't have done it without them. They are my everything and I would have given up long before now without them.
