Things are nowhere near "stable" where my chronics are concerned. Here's a rundown
Chronic Fatigue Syndrome/Fibromyalgia (Dx 1995)....Still tired. Though some days I will be up for 36 hrs straight and not feel sleepy. If I'm not careful and MAKE myself sleep (aka knock myself out with meds) then things go downhill fast.
My fibro pain is still....there. The vicodin keeps it mostly in check so that I'm not writhing in pain all the time. My cognitive issues (fibro fog) have been bad. I can ask my husband to do something for me, he'll step out of the room and poof....I don't know why he left. Words, letters & numbers have been jumbly.
Chronic Daily Headache (dx 2004)....of my chronics, I think this one affects me the least. Yes, I still pretty much have a headache every day, all day. But the vicodin/ativan combo keep it to a dull roar.
Psoriatic Arthritis/Ankylosing Spondylitis (Dx 2010)....after a good trial of methotrexate, I finally had to stop a few months ago. Between the headaches (awful), the nausea (thank god for zofran) and my hair coming out (I am really thinning out around my crown *sniffle*) it just wasn't worth the side effects to keep on it. After a few months off, to see if the med was helping at all, I determined OH HELL YES IT WAS.
My hips and back are very bad. I can literally stand for maybe 5 minutes before I'm ready to collapse. Walking more than down a hallway is too much and I need my wheelchair. I am finally using the word "disabled" without cringing all the time.
My rheumatologist has started me on Enbrel autoinject, once a week. Even though there is a headache risk, the medication has a short half-life. Because I get sick alot and am allergic to most antibiotics, this was an important factor in our decision to go with Enbrel.
I was worried about two things--were we going to be able to afford it; and how bad was this going to hurt? My son has an epipen for his anaphylactic food allergies and the tester HURT. And I'm supposed to give myself a shot in the stomach? WTH?
Well, the company that makes Enbrel took care of my first worry--*they* initiated the call to put me on the Enbrel Assistance Program. Usually we don't qualify for anything--but they are covering the first 6 months 100%. FREE. After that, it will cost us $10. THAT'S IT. This is a med that can cost well over $25,000 a year out of pocket. I literally cried on the phone with the woman taking my info. Plus I got my own "medical swag" bag--a refrigerated bag, sharps container, calendar, booklet of info, travel bag with instructions for how to deal with airline security.
I may snark at Big Pharma, but really, I am overwhelmed with gratitude for this program. Between my other meds and the meds my son is on, we are on a first name basis with the local pharmacy.
I went to my Rheumatology appt. last week, first dose with me, so she could show us how to do it. I say "us" because in the past, hubby has always given me my shots. Yes I have a tattoo. Yes I am afraid of needles. I am a walking conundrum.
She insisted this was no big deal and that I could do it. My thumb was too weak to push the button (I've had wicked thumb twitching going on for weeks now) so she did wind up doing it, and......it DID NOT HURT. Not a tiny bit. I was thrilled!
I was hoping I could tough this out because I figured if my son could see ME getting the shot every week, it might make him less fearful of getting his shot (he's never had to have one thank god) OR of having to self-administer in case of emergency. Yes I'm going to let him give me the shot! He was proud of me :)
And that leaves me with.....Complex Migraine Disease (Dx 2004). I decided it was time for a break from the depakote. Sure enough, no change. Maybe it did help in the very beginning (we think 2-3 years ago). It sure did make me gain a LOT of weight. And we realized made me VERY sleepy--I stopped "needing a nap" every single day.
When I visited my Neurologist, he wasn't unhappy that I had taken myself off. But that left me with.....nothing. Nothing except my rescue dilaudid to keep me out of the ER. We decided that the next step was trying Botox. Yes, the same kind that erase wrinkles. Only mine will be diluted, and injected into my neck as well as across my forehead. I see the doctor in 2 weeks. Downside, it can take 3-4 treatments to see improvement. And you have a treatment every 12 weeks. Do the math : /
But there is a glimmer of hope....I was contacted by the owner of a company who wants me to try a rather new product that I hope will PREVENT, REDUCE and perhaps even ELIMINATE some or all of my migraines. NATURALLY. I know, sounds too good to be true, right? I would have thought so as well except I'd been following this research for a few years. I expect the products this week and will post as soon as I can after giving it some time to form a good opinion.
It can't come too soon--I'm in the midst of a status migraine--a migraine that lasts longer than 3 days/72 hrs. Entering day 8. My Neuro called in steroids that will hopefully knock it out. I have about 3 episodes a year. My longest migraine I can recall was 16 days. It IS bad but after about 4 or 5 days it settles down a bit so that it's painful but you don't want to shove a spike thru your head every moment. Lots of dark room, lots of ice packs, lots of meds.
FYI I do not drive anymore. I hate that. But it's safer all around, between my meds and my pain/fatigue. Still sucks though.
If you haven't checked it out yet, I've started a new hobby--nailpolish. Hush, it's fun. And I consider it art on a wee tiny scale LOL Plus I'm "meeting" really cool people on the internet from all over the world. Head over to
Manicured Slayer for all my polish (and soon) beauty reviews!
So, that's where I
stand sit lie down on my chronics. Many of my "bad anniversaries" are coming up. CFS/FMS 16 yrs; CDH/CMD 7 yrs; PsA/AS 1 yr. At least I love my dream team of docs.
Coming up--a MUCH BETTER anniversary of different sorts! MINE! :) Stay tuned....
Chronic Fatigue Syndrome/Fibromyalgia (Dx 1995)....Still tired. Though some days I will be up for 36 hrs straight and not feel sleepy. If I'm not careful and MAKE myself sleep (aka knock myself out with meds) then things go downhill fast.
My fibro pain is still....there. The vicodin keeps it mostly in check so that I'm not writhing in pain all the time. My cognitive issues (fibro fog) have been bad. I can ask my husband to do something for me, he'll step out of the room and poof....I don't know why he left. Words, letters & numbers have been jumbly.
Chronic Daily Headache (dx 2004)....of my chronics, I think this one affects me the least. Yes, I still pretty much have a headache every day, all day. But the vicodin/ativan combo keep it to a dull roar.
Psoriatic Arthritis/Ankylosing Spondylitis (Dx 2010)....after a good trial of methotrexate, I finally had to stop a few months ago. Between the headaches (awful), the nausea (thank god for zofran) and my hair coming out (I am really thinning out around my crown *sniffle*) it just wasn't worth the side effects to keep on it. After a few months off, to see if the med was helping at all, I determined OH HELL YES IT WAS.
My hips and back are very bad. I can literally stand for maybe 5 minutes before I'm ready to collapse. Walking more than down a hallway is too much and I need my wheelchair. I am finally using the word "disabled" without cringing all the time.
My rheumatologist has started me on Enbrel autoinject, once a week. Even though there is a headache risk, the medication has a short half-life. Because I get sick alot and am allergic to most antibiotics, this was an important factor in our decision to go with Enbrel.
I was worried about two things--were we going to be able to afford it; and how bad was this going to hurt? My son has an epipen for his anaphylactic food allergies and the tester HURT. And I'm supposed to give myself a shot in the stomach? WTH?
Well, the company that makes Enbrel took care of my first worry--*they* initiated the call to put me on the Enbrel Assistance Program. Usually we don't qualify for anything--but they are covering the first 6 months 100%. FREE. After that, it will cost us $10. THAT'S IT. This is a med that can cost well over $25,000 a year out of pocket. I literally cried on the phone with the woman taking my info. Plus I got my own "medical swag" bag--a refrigerated bag, sharps container, calendar, booklet of info, travel bag with instructions for how to deal with airline security.
I may snark at Big Pharma, but really, I am overwhelmed with gratitude for this program. Between my other meds and the meds my son is on, we are on a first name basis with the local pharmacy.
I went to my Rheumatology appt. last week, first dose with me, so she could show us how to do it. I say "us" because in the past, hubby has always given me my shots. Yes I have a tattoo. Yes I am afraid of needles. I am a walking conundrum.
She insisted this was no big deal and that I could do it. My thumb was too weak to push the button (I've had wicked thumb twitching going on for weeks now) so she did wind up doing it, and......it DID NOT HURT. Not a tiny bit. I was thrilled!
I was hoping I could tough this out because I figured if my son could see ME getting the shot every week, it might make him less fearful of getting his shot (he's never had to have one thank god) OR of having to self-administer in case of emergency. Yes I'm going to let him give me the shot! He was proud of me :)
And that leaves me with.....Complex Migraine Disease (Dx 2004). I decided it was time for a break from the depakote. Sure enough, no change. Maybe it did help in the very beginning (we think 2-3 years ago). It sure did make me gain a LOT of weight. And we realized made me VERY sleepy--I stopped "needing a nap" every single day.
When I visited my Neurologist, he wasn't unhappy that I had taken myself off. But that left me with.....nothing. Nothing except my rescue dilaudid to keep me out of the ER. We decided that the next step was trying Botox. Yes, the same kind that erase wrinkles. Only mine will be diluted, and injected into my neck as well as across my forehead. I see the doctor in 2 weeks. Downside, it can take 3-4 treatments to see improvement. And you have a treatment every 12 weeks. Do the math : /
But there is a glimmer of hope....I was contacted by the owner of a company who wants me to try a rather new product that I hope will PREVENT, REDUCE and perhaps even ELIMINATE some or all of my migraines. NATURALLY. I know, sounds too good to be true, right? I would have thought so as well except I'd been following this research for a few years. I expect the products this week and will post as soon as I can after giving it some time to form a good opinion.
It can't come too soon--I'm in the midst of a status migraine--a migraine that lasts longer than 3 days/72 hrs. Entering day 8. My Neuro called in steroids that will hopefully knock it out. I have about 3 episodes a year. My longest migraine I can recall was 16 days. It IS bad but after about 4 or 5 days it settles down a bit so that it's painful but you don't want to shove a spike thru your head every moment. Lots of dark room, lots of ice packs, lots of meds.
FYI I do not drive anymore. I hate that. But it's safer all around, between my meds and my pain/fatigue. Still sucks though.
If you haven't checked it out yet, I've started a new hobby--nailpolish. Hush, it's fun. And I consider it art on a wee tiny scale LOL Plus I'm "meeting" really cool people on the internet from all over the world. Head over to
Manicured Slayer
for all my polish (and soon) beauty reviews!
So, that's where I
standsitlie down on my chronics. Many of my "bad anniversaries" are coming up. CFS/FMS 16 yrs; CDH/CMD 7 yrs; PsA/AS 1 yr. At least I love my dream team of docs.Coming up--a MUCH BETTER anniversary of different sorts! MINE! :) Stay tuned....