Month: June 2015

A Glimpse to the Past

Earlier this week I watched our friends dog over night. They have a new baby, limited space and two dogs. I am a completely different person around dogs. I have always been an animal person, growing up we always had cats, I had a whole bunch of mice, I kept snails as pets, I loved the various snakes and lizards my brother kept, a friend and I saved a pigeon from a cat and kept him because his arm was broken, and the same friend had an array of guinea pigs,  rats and other creatures I loved depending on when and where you would catch her.

However, I had extremely limited experiences with dogs. My grandmas next door neighbor had a basset hound I loved. My best friends house mate had a dog in their house for a few weeks. My mom watched her dad’s dog briefly after he died, but she is allergic. More important than my mother’s allergy was my dad’s fear. Apparently when he was a child he was bitten in the face by a dog and has never recovered. You can still see the fear in his eyes and the stiffness in his body whenever there’s a dog near by.

My first real experience with dogs was when I was 17. My boyfriend at the time lived with a German Shepard and a Rottweiler. I was told that when I met them I should get down on their level. That seemed scary but I did, they were very gentle and sweet. His room was in the attic, up a ladder, so the dogs were apart from us all night. The next morning I woke up before my boyfriend and headed downstairs. I sat down on the couch and both the dogs joined me. The rott layed her head across my lap and the shepard curled up gently next to us. It changed my life. I was so content in that moment and Roxy the rott would become one of my best friends. After me and my boyfriend split up and I saw her less we always had a special moment when we visited. When I came in the door I’d kneel down to pet her and she would put her arms on my shoulders like she was hugging me and I would give her lovin’s until I could no longer hold her weight. Then I would fall backwards and she would smoother me in kisses. This went on for like half an hour every time I saw her. To this day I can’t wait to get her smiling face tattooed on my arm so she is with me always.

Ever since then, dogs, especially larger breeds, have been such an important part of my life. I bond deeply with every dog that becomes a constant in my life. When I am interacting with a dog I am happy,  I am content.  I can ignore things that make me anxious if I have canine companionship. I can smile and laugh so easily. I talk with dogs,  I will talk way more if I’m alone with a dog than I do around people who don’t make me 100% comfortable.

More importantly than any of that, I realized that they minimize my pain.  When I am playing with dogs I have way more energy and can move and do so much more. The dog I was watching is a Boston Terrier, a tiny little ball of energy. I am so in love with him. But interestingly, since he is a small dog he bounces all over me when we play, his nails scratch me, by the end I am covered in bruises….and..I..don’t..feel.. a.. thing. I have a scratch on the back of my arm my husband saw,  he said one more pound of pressure you would have needed stitches. It.. Didn’t.. Hurt. With my fibro just his weight bounding off of me at full speed should be too much to handle, it’s not.There is nothing on this planet as therapeutic for me as dogs.  I used to be a really active person, covered in bruises from just go, go,  going and going hard. Looking down at my legs covered in scratches and bruises I feel like myself again, the old me. It makes me smile to see that I’m active enough to cause myself a little damage.

I’m writing this with a boston snoring to my right and a pitbull snorin to my left. I stopped typing this multiple times while they climbed into my lap. I am pretty sure I have a smile across my face. I got my dad’s permission to watch the boston on occasion for my mood and our friends sanity. He was extremely reluctant. After getting permission we didn’t tell him the night the dog stayed over,  making sure that he couldn’t manifest any imaginary problems. I can’t wait to check to see if it kept him up at all so we can do it again. I doubt he even knows the dog was there.  I can’t wait to be able to do it again.

Response

Yesterday was my four year wedding anniversary and my husbands birthday. The night before we picked up our friends boston terrier to puppysit. I’m also on my period. I have blogs to write and comments to respond to but I am low on spoons. For now I am just managing to keep up on reading your posts.

Embarrassing Fog

Man can fibro fog be embarrassing. Thinking about it now perhaps my new meds make it a bit worse.  Or maybe it’s just the balance of hormones at this point in my cycle. Either way I have made a small fool of myself pretty much any time I’ve gone into public this past week. I keep mixing up words. First I was asking for a yogurt at a cafe I frequent for my easy bites,  and instead of calling it yogurt I asked for pudding. I caught it quickly and stuttered a bit trying to get the right word out to correct myself but how when I’m staring at yogurt, thinking yogurt,  have been thinking yogurt for the past three hours did I say pudding instead? I did the same thing a day or two later while ordering a bagel,  I asked for a muffin. I used to be proud of my intelligence. I tutored and people got better grades and wanted to “borrow your (my) brain just for this test”. I got paid to sit on a discussion panel about alternative education. Now I’m confusing yogurt with pudding. I remember trying to chit chat with one of my husband’s friends. He mentioned how busy he’d been. I wanted to ask if it had been the kids soccer team I knew he coached that had been keeping him busy. I saw the field in my head. People kicking the ball around. And instead of asking about soccer I asked if he’d been busy with “that sports thing”. So embarrassing. Fibro fog makes me feel like an idiot. I don’t care around my husband, but in public no one knows my past achievements, I just sound like a bumbling fool.  *sigh*

The Cure For Fibromyalgia.

Fibro Chick's avatareffingfibro

I see this statement all over the place. Book titles, websites, natural health sites, spiritual health sites, yoga programmes, meditation programmes – you name it, every single corner of the health market seems to have made this claim.

At the risk of raining on everyone’s parade, I’m writing this in the hopes that I can save advanced fibro sufferers the crushing disappointment that will inevitably follow if they choose to pursue whatever purported method of “curing” their illness is currently being touted.

Firstly, I need to make it clear that I am all for finding the way to recover from fibromyalgia. I would give almost anything to find the answer, to recover my own health, to give the answer to other sufferers too. I never stop looking, never stop researching, never stop experimenting with different possible treatments.

But I have also had more than my share of rising excitement at…

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Moving Mountains.

I wanted to favorite this over and over so I figured it deserves a repost. I’m always wondering whether I should be making/wearing informational t-shirts abouts chronic pain, flared and fibro.

Celebration

First of all, I have officially surpassed 50 followers. I cannot believe there are so many of you who are reading what I would classify as me ranting and venting about all the depressing stuff in my life. But I hope those of you who are reading are gaining inspiration, feeling a little less alone in your struggles or getting whatever support you need.

In other news, I worked my ass off yesterday and finished everything on my to do list. I’m going to list it all off because I am so so proud. I cleaned out a cabinet for my father in law to keep food in. It was hard because a vegetable had gone bad and leaked all over the unfinished wood. I cleaned a fan my dad pulled out of the basement. I vacuumed out my computers’ vents. I wiped down the inside of my fridge. I cleaned the windows and mirrors. I wiped off and dusted all the surfaces in our room. I vacuumed the floor. I cleaned our sink,  toilet and shower. I cleaned our bathroom floor. Rinsed the bucket that catches the water under our sink. Wiped down our bedroom door and the floor outside our room because we think the cat peed there. I cleaned all the oil and ashes off the tray we use to protect the table we keep our cannabis and bongs on. I called the lady from social services who needed more info for my husband’s Medi-Cal. I took the trash out. Wrote a blog. And I showered. I OWNED yesterday. Fibro was my bitch. So proud of myself.

Juggling

I am juggling so much stuff today and am so proud of myself, but I really wanted to get a blog out today. I updated you on my health, but I need to share what’s been going on with me that has been making it harder for me to blog and has just been a major stresser. So, while I am juggling some reading, waiting for my anti-allergy spray to set so I can vacuum, waiting for my anti-mold spray to clean my shower, after doing a pretty damn deep cleaning on my whole room, I will give you guys an update.

I live in California where medical cannabis is legal. I have been a “patient” for about 4 years and have been using it to treat my various conditions for 14. It saved my life. My husband works at a cannabis collective and is extremely passionate as well as extremely educated about using it to help sick people. Many cities and counties in California create their own laws regulating the use, sale, and possession of medical cannabis and there are many issues throughout the state because of these local laws. Unfortunately, my husband works in a city where they have recently enforced a new ordinance (which has many questionable, possible illegal stipulations). Even more unfortunately, my husbands’ place of business is also family run. It is run by a father and son, of which the father has no clue about the industry and seems to be both going slightly senile and becoming a rather sketchy business partner to say the least. Long story short my husbands’ place of employment has been closed for about three weeks while they try to get all of their legal orders in line. The result of this is that we are terribly broke and my husband is with me almost constantly leaving almost no time for blogging. Hopefully we are at the end of this disaster and things will be returning to normal soon.

On top of all of this we have had our hands full with my father in law. As I mentioned before he is homeless and living multiple hours from us, making it very difficult to help him. Last time we saw him, we talked about him moving closer to us. We got his car up and running and left him with the gas money to get to us. We can’t give him a place to stay but we can help him navigate the bureaucracies to get the help he needs. We can store food for him and give him a place to cook, offer a place to shower, wash his clothes, and occasionally feed him ourselves (especially when my husband is actually working, lol). It took him a few weeks and he failed to call ahead like he said he would but he has relocated. My father in law has been in our town since last weekend. We have visited with him, fed him, and gotten him set up with the food bank. He looks so much healthier and happier already. However, this is using a lot of our time and resources we don’t really have right now. Stress. Not to mention the text I got from my mother this morning saying she was out of money and food until Monday, we barely have enough to feed ourselves, let alone my father in law and mother.

So what I am getting at here is that my life has been a crazy mess and somehow, as I’m sure you got from one of my last posts, things have been looking up for me and I am doing better. Who would have thought. I am strong. I got this.

Somehow

Somehow I have been busy and blogging has been on my mind. Hopefully I’ll be back soon. I’ve been doing some serious socializing and helping out a lot with my my father in law. I have been  crashing hard by the time I get home. I’m barley hanging in today.

Don’t Speak……Don’t Tell Me ’cause It Hurts. What NOT To Say To Someone Chronically Ill. Part Two.

What not to say to a fibro sufferer, complete with perfect explanations. Epic!

Fibro Chick's avatareffingfibro

8.   “You’ve brought this on yourself. You were so determined to be ill that you’ve talked yourself into it.” Yeah……cos I’ve got THAT much control over every one of my involuntary physiological processes…I must be some kind of Indian Guru or something. Where’s my medal? And if I’ve got such an awesome level of control over my health, how come I can’t make myself well again? I wasn’t “determined to be ill,” you moron; I just knew something wasn’t right a long time before any of you did because I live in this body. Do you seriously think I purposely, deliberately screwed up my happy, productive, independent, joyful life? The one I had Before All This? There is no upside to be crippled by some mysterious illness that no-one can find a cure for. Well, maybe one: it strips away shallow friendship, sorts out the real “friends” from the…

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Changes, Progress, and So Far to Go a.k.a the big health update

Today I woke up knowing I would be spending the day alone and running through the things I could do with my time. Picking up the book that I started probably over a month ago, that I only got a few chapters into was certainly on my list along with some minor chores I had been putting off. I needed something to take up my time. Writing my health update was on my possible to do list and I have been putting it off so long, this is where I have chosen to start today.
The last time I gave any major updates I believe I was struggling to figure out if I liked my new therapist, trying new medications for depression, awaiting scheduled appointments with a psychiatrist, and had stopped the only medication I was trying for my fibromyalgia. So much has been happening.
I made the official decision that my new therapist was not a good fit. We had maybe six appointments, and the fifth one was a tipping point for me. During the fifth appointment it became apparent that we had literally had almost the exact same therapy session five times in a row because she made me repeat everything. She was also very stuck on trying to change things that I am actually happy with and couldn’t move past the surface problems in my life that I know in the moment aren’t fixable. I didn’t need a life planner, I needed a therapist. I went to the final appointment with her because I was on new medication and my husband and I thought it was best that I had an active therapist while trying out a new psychiatric medication. As soon as I had a scheduled appointment with another therapist, I called her to cancel all of my future appointments.

I was between impressed and apprehensive about my new therapist. She was very thorough with me when talking about taking me on as a patient, she also was able to communicate through e-mail with me after my initial phone call so that I didn’t have to trigger my phone anxiety. I was apprehensive because she seemed apprehensive about me switching therapists, making sure I’d discussed my issues with the person I was currently seeing and such. But it has actually worked out quite well. I also had anxiety because she was listed as being in my town but she had given up that office location and was working mostly from her home office in the next town over. Going to a strangers home is definitely a high anxiety situation for me. Also, who is this lady that she is comfortable having mentally ill people over to her home? But as soon as I walked through her yard and sat in her office I was grateful. Her yard is beautiful and her office is comforting, she offers tea or hot chocolate, lights a candle, has a heated blanket on the couch.  She had me comfortable enough by my second appointment that I actually got teary, that is rare around strangers. I believe I’ve shed tears at every appointment since. We quickly decided since I wanted more intensive work and had a rather traumatic childhood that we should try EMDR. EMDR is eye movement desensitization and reprocessing, it is a way of reprocessing traumatic memories so that you can deal with them in a healthier way. This is a process I read about years ago and was interested to try but had completely forgotten about until she brought it up. I knew it would be hard, but I got back into therapy to tackle the hard things so I jumped right on this opportunity. It was a risky thing to do for me with as new as our relationship is and how hard it is for me to feel safe and trust someone new. However, for some reason I feel safe with my new therapist. There is a lot of work to lead up to the meat of the EMDR and we spent the next few appointments covering all of it. Our last appointment two days ago we had our first actual EMDR session. It was difficult, it was a little weird for me, I feel like it would be really easy to laugh at this work and not take it seriously. We did some “inner child work” where I talked to myself as a child, it was hard to take this seriously for a split second, but I just reminded myself that I am in this to really give it a go and give myself a chance so I did. I really feel what we are doing in the EMDR, I have a feeling it’s just what I have needed. I am grateful for this opportunity. I can feel it changing me already, even just the prep work has been wonderful for me.  I highly recommend looking into it for anyone working through trauma and dealing with anxiety who have only had limited success with other therapy methods or medications. During the prep work it came up that this type of processing is normally what our brains do for us during REM sleep, however it is my understanding that it is difficult for fibromyalgia sufferers to reach REM sleep so perhaps EMDR will be the only way I can properly process any difficult life events.

At this point in writing my wrist and back are already killing me. Break time, lol.

And I return, out of boredom rather than recovery, whoo!

So, I shared in one of my previous posts that I had gone to see new primary care provider and liked her a lot. She started me on Prozac but after about a week I began having chest pains and I was taken off. I was given Paxil instead to take when the side effects from the Prozac wore off. It took maybe two weeks before the chest pains seemed to return to normal and I finally began the Paxil. I have been on it a little over four weeks now. I did have some chest pains at first on the Paxil; however, they were no worse than the usual pains I experience because of my fibro just slightly more frequent. I didn’t bother to mention them to my doctor. They have gone away. The other side effects I’m having to cope with are a slight loss of appetite with a slight increase in nausea, extreme daytime sleepiness, sweating of my hands and feet when I wake in the morning, and finally a physical sensation very similar to ecstasy for me when I first awake or when I am extremely tired. All of these side effects have reduced to almost nothing, they are 80 to 90 percent gone depending on the side effect. As for it’s positive effects, I feel as if it is working. Not as well as the Prozac seemed to be working the last day or two I was on it but perhaps that was actually the beginnings of serotonin syndrome, and not the medication working, considering the side effects I was experiencing and how rapidly I reached what I would call almost a euphoric state. On the Paxil I just seem to have more control over my negative thoughts, it does something when I challenge them. I can be the voice of positivity in a bad situation, this has never been my role before. And I have been doing much better in social situations that would normally be very overwhelming and anxiety causing for me. So, yay! Oh, I may also be having some sexual side effects, I seem to be a little aroused almost constantly now, which isn’t so bad for me, I typically have a high sex drive so this isn’t too disturbing or unnatural for a healthier me; However, when I think about something sexual actually happening it sounds kind of uncomfortable, I have pushed passed this and tried anyway. Sex seems to feel okay, but oral stimulation and masturbation seem a little weird like I’m not connected to that part of my body and it is pretty difficult to orgasm. Still, as my side effects seem to be lessening and the medication seems to be working to some extent, I believe it is worth sticking out. I think even if this is where the medication plateaued I could accept the side effects as they are to be able to enjoy the benefits.

I had an appointment scheduled for May 12th with a psychiatrist. I wanted to make sure I had help getting back on to the right medication for me. As usual with new psychiatry appointments it was a long wait. I think about two months, and I know for others it can be much longer. When I arrived at my appointment, about a week and a half into my new medication, I couldn’t figure out how to get into the office. That is because it was closed. The doctor they had scheduled me with had apparently left their practice and they took down the wrong phone number so couldn’t call to reschedule with me. I was lucky enough to be standing outside the office door when the receptionist was leaving. She explained what happened and scheduled me a new appointment. Now I have to wait until some time in July, another month and a half to two months onto my wait. At least by this time I should be fully settled into my low does of Paxil and we can decided whether I want a higher does, to switch, stay the same, or add in other medications. But still this was a very frustrating experience.

During my appointment with my new PCP to discuss medications she suggested I return in a few weeks for a regular physical, I hadn’t had one in a long time if ever. My physical was very thorough and I still really feel I have found a good new PCP. She sent me for lab work since it had been so long and I am not the picture of health. Everything came up fine except my vitamin D is low. She recommended taking a 1000IU supplement daily but I already take a 2000IU vitamin D supplement daily so she told me to double up for a week and we would check again in a few months. She referred me to a new rhuemetologist to treat my fibro. I made an appointment with him. Less then a week before the appointment I had waited weeks for, I got a call saying there was an insurance issue. Confusing stuff but essentially they accepted my insurance but not if I was on the network I was on but if I changed to their network I couldn’t keep seeing the PCP I like. Appointment canceled. I asked my PCP for a new referral that was in network. She got back to me quickly. I’ll have to have my husband drive me like 30 minutes away but the new rheumetologists office seemed like they were on their shit and had an appointment only about two weeks out. During my physical my PCP also suggested I schedule a follow up appointment for after my specialists appointments, just to check in. Yes, you read that correctly. She actually wants to just check in with me after I see my specialists. With all the health problems I deal with I have always wanted (and expected) my regular doctor to be kind of my health coordinator. I have never gotten that, until now. I am so excited for that. I can’t tell you how excited I am for that.

Over all I guess you could say I am on the right track here. It’s been slow going but I am getting it together. I really hope the new rheumetologist can help with my fibro pain. My new anti-depressant has given me some more energy and a lot more drive to do things but my body cannot keep up. I am too weak and end up in too much pain trying to keep up with myself but I have been getting so damn antsy in my bed with all of these wants in my head!

I hope everyone else keeps(or starts) making progress! Best of luck to you all. We all deserve a little relief and a little hope.