Dear Readers:
This is part 1 of 3 parts. These are from a response to a kind note from my friend, Nikola. She had written me a praising, uplifting letter. I’ve used bold font to show clips from her letter. Then I respond to them.
So if you want to find the answer to these, read on!
What's causing you pain? Can you tell me exactly what your illness is?
Are you on pain meds? Do the meds make you sleepy?
The good news is that the pain is better than its worse. I feel like it fluxes between 2-5 (Pain scale of 1-10) during the day. The bad news is that I'm getting more involved in my family and Physical Therapy. The bad news is that I don’t realize how much I’m doing on some days, and so I end up in more pain. On those days, I’m a 7 and I struggle to get back to my normal pain. So my free time has been decreased. And I let September slip by without even a postcard to you!
You asked a lot of questions and said a lot of nice things about me in your two emails, so let me see what I can answer.
What's causing you pain? Can you tell me exactly what your illness is?
Permanent Nerve Damage to the Left Sciatic Nerve Root, resulting from two failed back surgeries. I have pain in my back, hip, leg, and foot all the time. I notice it 75% of the time. But I'm getting more done, and doing well on a med "cocktail" from my pain management doctor.
Herniated disk (L4/L5) I had surgery Sept 2008 for that. I burst the disk during labor with my #4. Pain and spasm are normal for me. I do better for a while, then worse, then better. But there is a slow overall decrease in the pain. Between the disk surgery pain and my nerve damage pain further down, I'm not sure which one is which most of the time. I can't do cortisone shots because I become psychotic on them. I've never made it into the mental hospital, and I don't want to start now by having a "helpful" shot to give me a mini vacation.
Encroached pudenda nerve. This is because I have 4 children with a weak body, with low collagen levels. (Didn’t know that at the time) So things didn't pop back into place as they should have. My bladder fell (stage 3 cystocele, my uterus fell (only stage 1-2 prolapsed), my rectum prolapsed (stage 3?)and flatten (Rectocele stage 4). I had two surgeries to put things back into place. No more kids for us. But the pelvic floor nerve is still sending pain. It's getting better....time passing and again that "cocktail" What it means pain wise is a shock of pain in my girly parts, on a good day. On a bad day it feels like I’ve been kicked between the legs with a baseball bat. On worse days I feel like the baseball bat was on fire, and I'm left with deep burning. Even my thighs hurt. Laying down makes it better. This is why I brought a pillow everywhere, and have laid down for 2 years. Again, it's getting better. I've recently sat thru church, sat thru choir and a choir event, sat thru "Wicked" with my daughter.
Ovarian/PMS pain Honestly, I don't know if this should go above or not. All I know is that I'm getting big ovarian cysts, when I rarely did before. And each time I have a period, my pelvic pain jumps thru the roof. So even though I had my tubes tied, I'm going to be on birth control continually for the next year. At that time I'll let myself have a few periods before deciding if a hysterectomy would be beneficial.
Update: The Ultrasound showed NO cysts. The doctor thinks that I have endometriosis. Or scar tissue from the surgery. But Endometriosis, this frightens me. Next to cancer, this is a disease that I am very afraid of. Surgery can remove the current growths. But the way to stop it is to have a hysterectomy. But perhaps it’s neither, but just a muscle spasm in the pelvic floor. There is a group of doctors/books that talk about trigger points to fix this diagnosis of the pain. And surgery isn’t needed. Much to think about.
Migraines. They are worse than years past. Doing naturopathic and new pharmacy stuff. I know bright lights trigger it, aka, lying flat on the floor/bench and looking up into lights. If I don’t risk it, and take the migraine meds early, I will find no relief in with any of my meds. I hope the last time this happened will never happen again.
Gall bladder: My gall bladder failed during my pregnancy. It affected what I ate months before and after the surgery. I also had a lot of pain around my ribs before and after the surgery. It's just been a few months that the pain has turned to very rare flashes. And more recently I've been able to eat anything I want without intestinal consequences. There was a time last year that I never thought I'd be able to eat a hamburger, fries, and a shake in one meal.
Teeth/root canal: I have two teeth that are causing me much pain. With the cold weather change, I’m more aware of it! I know I’m due for a root canal on the left back side. But the right back side is new. For most, this isn’t worthy of putting on the pain list. But for me, even a tooth cleaning will be painful. On top of the mouth pain, I am blessed with an increase in all the different pains in the body. The brain is a complex, mysterious thing!
Narcolepsy: Not painful, but sure scary and can send me into a sort of pain attack. My Narcolepsy is in the form of EDS, hypnagogic hallucinations, sleep paralysis so even at my best health, I've usually needed an afternoon nap.
That's all I can think of now. I just got back from PT, and the fatigue is setting in.
Are you on pain meds? Do the meds make you sleepy?
I've been on and off pain meds from surgery to surgery. The pain wasn't getting better within each surgeons expected time. So I had a great primary care doctor and pain management doctor to get me to this point. Now I'm just trying to medicinally manage the pain I might have all my life. My pain management meds are around 7. I take 5 everyday. Lyrica and Lamictal (old siezure drugs that help nerve pain) Baclafin (MS use it to stop muscle spasms) Oxycotin (for what pain is left), Birth Control (stop my recently painful periods). For migraines I use Relpax. For those days that the pain still is unmanaged, I have a nasal spray that helps the pain in 5 minutes (Ketamine).
The meds that I'm currently on don't make me sleepy. If they did at first, I didn't notice. Just healing makes me sleepy. And I've got some narcolepsy (in the form of EDS, hypnagogic hallucinations, sleep paralysis so even at my best health, I've usually needed an afternoon nap. Earlier this year, I couldn't drive from the old meds. But the mix has changed, and my brain is cleared, and the doctor okayed it. Driving myself to doctor appointments again is wonderful! Hmmm, really, having the ability is wonderful. But driving is a sure way of increasing my pain!
My kids are growing so fast, so they have kept me going better than I would have been without them. I've tried to hurry anything that will get me functioning enough to be part of their lives before they grow up. This includes using strong meds (2 anti-seizure meds good for nerve pain, opioids, MS muscle spasm drugs). These meds could affect me badly later in life. This biggest risk could be addiction to the opiates. I'm willing to risk that, and so are my doctors. Raising my babies is the best part of my life. And I'll do anything to have more of this time.
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