update

Been Too Long

Just giving you guys an update on life. Lots to share not a lot of energy to type it. Hope to be posting again soon. Take care of yourselves!

…I made a vlog that was apparently too long since I don’t pay for wordpress and can’t upload it. I’m including a link for it, I know, scary, clicking links. I’m sorry. I just added it to my google drive. So that’s all it is, a video blog I made on my phone then uploaded to google drive. I understand if you pass on this post because of it. In the future, much smaller vlog’s or paying for wordpress if I want to keep sharing that way….which is actually much easier for me. So come see me face to screen if you want if not you can catch me next time. Also, I did not make notes for the video, I say umm a lot, please forgive me, lol.

My First Ever Vlog!!

Um, wow.

So, you may not be hearing from me as much. I already went in for an interview for the doggy daycare attendant position and pending a trial run I got the job! It’s only two days a week but I imagine because of my fibro I will need more recovery time than I used to. I’m excited but nervous because it’s been about 4 years since I had a normal job with a boss and a paycheck. But I’m pretty damn sure I got this. Things changed really fast but I think it’s all good. I guess we’ll see. I’m sure I’ll face new obstacles while trying to work with fibro. I’ll be thinking of you all and I’ll give you an update when I can.

Learning From Bloggers

Hey guys! So it’s been way too long. Life has been crazy, as always. We had been spending a lot of time with a friend of ours who is having a bit of a sad streak while dealing with some paternity and child support issues. We were pretty much spending all of our free time with him so he didn’t have to be alone. Then this Monday my husband went back to work with the company that closed down while dealing with legal issues. The day he went back to work he got a call saying he’d gotten the job at Whole Foods that he had interviewed for. So he went from no job to two jobs.

I had been thinking I could get working again as well. I thought it was maybe two or three months out because I wanted to keep working at the gym to get my strength and energy levels back up. On a whim I looked at Craigslist and there was a position for an attendant at a doggy daycare/hotel.  I decided I couldn’t pass that up and turned in a resume and cover letter today. Wish me luck!

But, to the real point of this post, lol. I got an idea from one of you to keep a binder for my fibro. I believe the bloggers binder was meant to hold test results, I knew a fibro journal would be different. I made an outline weeks ago but just got the paper and dividers I needed recently. My binder has a page with my current medications tucked in the first pocket.

The first section lists upcoming appointments followed by dividers with sections for symptoms, sleep, activity, diet and test results. The pocket in the back of the binder has a page with my doctors and their contact info.

In symptoms I just list anything I remember that bothered me that day, dry eyes, muscle spasms, thumb on right hand had shooting pain, anything like that.

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For the sleep section, I write when I go to bed and when I wake up, the total hours I slept that night and any time where I was in and out getting really choppy sleep.

For activity I list what I did at the gym if I went and anything else I do throughout the day where I use a lot of energy or expect it to cause pain, strain or over exertion. Activity also contains the packet from my rhuematologist about exercising with fibro and all the handouts from my physical therapists.

In diet I write down anything I eat or drink besides water or meds, then again maybe I should keep track of that too.

And in test results I have any blood tests I have had recently and any other results I had in my files that could be relevant or complete the picture.

My hope is that with a record of all this I can find triggers for my symptoms and make my doctors appointments easier because I won’t have to remember every little thing. It feels like a whole new way to take charge of my life and my health and I love it.

**I keep trying to add photos but most aren’t appearing. So apologies for lack of photos and if there ends up being duplicates blame the WordPress app. **

Spoke Too Soon

Life is falling apart and my paxil induced positive attitude can’t be a match for it anymore. Husband is still not back at work. We’re supposed to get final word on his works court case today. We called in the early afternoon to check what time we were supposed to know. The boss said he didn’t know but would call when he heard anything. It’s just after 7pm and no word. Today is everything, whether my husband has a job or not, and you don’t call. Even if the lawyer didn’t call you, this is your business too. Call the lawyer, find out what’s up then call us. Not even that consideration. We’re eating horrible stale or just short of rotten food from the food bank. I have been out of some of my supplements for weeks. We have no cannabis. We’re spending our time in misery waiting for phone calls from people not doing what they’re supposed to be doing. I can’t keep a positive attitude through this any more. It’s gotten delayed again and again. Today was my last hope and we’ve been let down again. I have been broken. I am suicidal again.

Really?

Just wanted to let you guys know I’m doing really well on the lyrica. I’ve really only notice a slight increase in my intolerance to heat. But besides that my pain levels are still way down and pairing that with the extra energy from the paxil I would honestly say I’m doing great. I’m even feeling like I could get a job again if things keep up this way. Obviously I’m not going to jump right in but am insanely excited. After a busy day I’m still more sore than I was when I was younger but it’s so much more manageable. Before the lyrica a busy day was doing one big chore all the way through and reaching 9’s on the pain scale, now a busy day is pretty much anything I feel like doing but at the end of the day I won’t top a 6. I was sitting at a 2 most of yesterday and I didn’t stop moving most of the day. A little worse off today for going so hard yesterday, but I  can live with a 6. A 6 may as well be a 2 because of how used to pain I am. I could go to work at a 6 if I was sure it wouldn’t get worse.  I may have found my miracle. I know everyone’s brain chemistry is different but for me, so far,  I cannot believe what a difference it’s made. I’m also aware I have to keep taking care of myself, the medication isn’t the whole story, I need to eat and exercise properly always and I’d love to go back to  acupuncture. For now though, I have to celebrate and appreciate this wonderful improvement.

Can Cause Death

Can cause death. Can cause seizures. Caused rare blood vessel tumor in rats but not mice.

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I said I was saving lyrica until after my trip so I didn’t have to deal with side effects out in the middle of nowhere. I forgot on Monday, our first full day back. On Tuesday my husband went to do some work for his boss and we weren’t confident in me trying new meds by myself since I could have a bad reaction. I took my first dose Tuesday night. Before I took it, being the good patient I am, I went to reread the list of emergency side effects to watch out for. I started freaking myself out seeing the warnings about death and seizeures and such. I reminded myself tons of my pills have had warnings like that. It seems like lyrica is either a living hell or a miracle for people and almost nothing inbetween.

Last night for a moment I had pains in my left arm and leg. Soon I fell asleep and when I woke up to use the bathroom I felt insanely foggy.  When I woke in the morning it felt like I could start to fight through the fogginess and my pain was practically gone. I took my morning dose wondering how it would feel during the day. I felt slightly buzzed all day. Apparently some people say it makes them feel high, I get that. To me it’s like that almost tipsy point, warm relaxed,  loose but also functional and coherent. I had a normal day. I was me today. I went for a walk when I was bored. I played with the dogs for hours. I walked them twice. I held and fed a baby for pretty much the first time ever. And all I’ve eaten today is a snickers bar. I feel like I have my old body back. I know I need to be careful and treat it better but oh my fucking god this is exciting. Funny thing is this was the medication I was prescribed after my diagnosis but my insurance wouldn’t cover it at the time. What a waste of a year. Oh well, time to get back to really living.

Getting Lucky

While my usual luck seems to be reacking havoc on most of my life
… husbands still out of work going on two months now with no chance of returning for at least 12 more days, we are broke,  I’ve been trying to live off one meal a day and quaker granola bars since they’ve been on sale,on Thursday we began having car troubles thus have no vehicle, and my husband and I are almost entirely out of any cannabis medication…
things seem to have turned around in terms of my health care. As I’ve already shared, I am really happy with my new therapist and just as happy with my new primary care provider. But if you have been following me for a while you might be wondering how things went with the new Rhuemetologist I was scheduled to see a few weeks ago.

Well,  besides a long drive to get there I am so so happy with my new rhuemetologist so far. It’s a female and she is a lot younger than most doctors I have seen (hmm,  my therapist and pcp are also on the younger side, what a coincidence). She was very thorough, initial appointments are scheduled for 45 minutes. She really listened to me, like really. It was an actual conversation between people. She didn’t seem to judge me or give me funny looks when I brought up strange symptoms that may or may not be related. She is blunt in the most wonderful way. She did a thorough examination and confirmed for everyone that I do not have arthritis, my joints ache because I am hyper-mobile.This is the first time I heard that officially, I suspected it and my physical therapist thought hypermobility might be an issue, but it’s official, in my file now. She was concerned I might have lupus because of some of the symptoms I mentioned. I had had that concern as well. She tested me for lupus and just a more in depth blood panel. She gave me muscle relaxers mostly to help me sleep if I’m feeling tight around bed time but also if I’m having a really stiff day. Most doctors in this area, especially dealing with someone so young, are reluctant to prescribe muscle relaxers or pain killers; she trusted me. I am earning her trust by using them as little as possible. She wanted to hold off on any other treatments until she got my test results back. She also commented that I had tried pretty much everything and were close to moving into trialing some things off label. Reading my visit summary after I got home she wrote in my record that I seem reliable. That is such an amazing thing to know your doctor thinks of you when you have fibro. We fight so much doubt. It was uplifting to read.

I went back for my follow up.  It went just as well. Everything came back fine, I have less than a 5% chance of having lupus since the tests were negative. We decided pharmaceutically the next step was either another round of gabapentin or lyrica. Lyrica was the first thing I was prescribed after my diagnosis but my insurance rejected. I got gabapentin instead which barely worked, made me gain weight and made my teeth ache. I have different insurance now and I’ve tried everything else: cymbalta,  gabapentin, amitriptiline, nortiptiline, I faked a trial on Savella (it is so close to cymbalta and that was my worst ever drug reaction). Lyrica is all that’s left. So that’s what we are going to try. I’m scared, there are stories of some horrible reactions. I’m particularly scared of losing my teeth; I forgot to ask the rheum about it but my last one denied ever hearing that despite it being all over the internet. However, there are people that say that lyrica has been an absolute miracle for them. So I could be starting on a path to fibro heaven or hell or anywhere inbetween. I could also end up wearing dentures before I’m 30.

We are going on a camping trip this weekend (first one since my diagnosis, scared and excited about this as well), so I’m going to postpone starting the lyrica until after I come home so that I can avoid any unexpected side effects while I’m already vulnerable. Next Monday I meet with a psychiatrist finally, which doesn’t seem as important as it did since paxil is working wonders. It will still be nice to have the right doctor to manage my psych meds since things can certainly change and I am still on the absolutely lowest dose. After that I just have to get myself a dentist so that I can do my best to save my teeth from a brutal lyrica death.