Wednesday, June 16, 2010

A little update

I went for another infra-red body wrap a week ago. It was pouring rain that day and the warmth felt amazing. I was really worried that I may not have the same results as the first time because the weather was so miserable and rain really sends my fibro into fits. I felt great afterwards. I had a bit of stiffness later in the evening but not the pain I'd been coping with earlier. We are in crazy busy time of year around here. We had a soccer tourney all weekend which meant driving and running between fields (3 boys in 3 different age groups all playing at different times), dragging chairs in and out of the van, packing coolers, sitting in the hot sun for hours on end, etc. I made it through the whole weekend without any ill effects. My normal routine after doing so much all weekend would be to crash on Monday but I did not and even went out shopping with my neighbor for several hours IN THE MORNING!!!! YEAH ME!!! LOL I purchased a package of the wraps and will go as I feel it is necessary. I'm also faithfully taking my coQ10 and my Gingko. Very encouraged by the results I'm getting with this treatment and feeling more like a normal person every day... whatever normal is for this crazy gal!

Monday, June 7, 2010

It's raining, it's pouring....

.... maybe I'd feel better if I was snoring?!?! The rain started overnight. I should have guessed it was coming as I was starting to feel poorly last night. However, we had a really busy weekend with soccer, piano recitals, etc. The King is out of town so that means I have to push it to the limit to get the crew to where they need to be without backup. I tried to take it easy yesterday orchestrating chores, helping the Princess organize her card making materials, supervising piano teacher cards, Father's Day cards and Father's Day crafts. I was still beat by the end of the day. Just as I thought I might finally be able to sleep (I have a hard time falling asleep when the King is absent) the Littlest Prince awoke complaining of a tummy ache. I got him situated in my bed with the royal barf bowl handy. He was restless and it took forever for both of us to get to sleep. He was tired this morning but his tummy was feeling better. I was hurting and knew that the lack of sunshine streaming into the room and the smell of rain, which I love, wafting in the window were to blame. I've had horrible pain across my shoulders the past week or so. Today I can lift my arms but it still hurts like crazy. I had hoped to finally get my routine bloodwork done so I could make a follow up appointment with my doctor and get that B12 shot. However, with the possibility of 2 soccer games tonight (oh how I hope they are rained out) and already feeling beat I just knew that I couldn't do it. It's frustrating to me. When I felt well enough to get the bloodwork done I had a sick child home for a week and then life ran away from me again. The King is away a good portion of June and with 3 boys in soccer 5 days a week, piano, school winding down, etc.... life is just crazy.

I managed to get an appointment on Wednesday for another infra-red body wrap. I'm praying I experience the same kind of results I did the first time. I'm nearing the end of my first of three months of 200mg of Co Enzyme Q10 and 200 mg gingko biloba (recommended in Dr. Alison Bested's book). I don't know for sure if I've experience any benefits of it yet but I'm committed to trying it for the 3 months.

Thanks for the encouraging comments. I'm trying to get better about blogging about my fibro but like everything...doing the best I can. I really appreciate that anyone reads my ramblings.

Monday, May 31, 2010

Does anyone really listen anymore?

I'm tired. This weekend sent me into flare mode. It was likely due to the drop in temperature by 30 degrees F (my American readers get confused when I use Celsius). We had rain and wet snow which never makes life easy for a Fibro girl. I had to attend an event on Sunday that was impossible to miss. My Mom was throwing a bridal shower for my cousin and the Princess is a junior bridesmaid. The King did not want me to go because he knew that I'd be unable to just sit and would be pitching in to help where I could. I tried to do the minimal but when you don't look sick and there are women older than you stepping up while young women sit round. I wasn't raised that way and I just can't do it no matter how much I pay for it later. The Princess was doing all she could to make sure I didn't have to do much but when you are in flare even the most mundane tasks can be too much.

A family member called today and I made the mistake, again, of truthfully answering the "How are you?" question. I don't know why I bother. She doesn't hear me when I try to explain fibromyalgia, she thinks it equates to depression and for me it doesn't. I've been depressed before. I've done the med circuit for post partum depression that morphed into plain old depression. It was the worst time of my life. Yes... even worse than dealing with the hell that is fibro. I can't imagine dealing with fibro and depression as so many of my fellow sufferers do. I am SO grateful that I have not had to deal with them together. I am tired of explaining that there is no magic pill. I'm tired of explaining that I chose not to take pain meds because I have addictive tendencies and very low tolerance for meds. I chose not to live my life in a haze... there are days I wish I could but I know my body and I chose not to put myself or my family through that kind of living. I told her that I over did it when I was already feeling poorly and now that I will have to pay the price for a few days while my body tries to recuperate. She made the comment "that is no way to live". I replied explaining that sometimes you have to do things you shouldn't do because you don't want to let people down. That if it would have been any other occasion on Sunday that I would have excused myself but bridal showers are once in a lifetime events. It is during times like this that I wish my skin would turn green or a neon sign would appear over my head so people would see that the one who doesn't look sick is sick and shouldn't push herself and has sacrificed a lot to be there for your special day and will sacrifice further as she tries to recover from doing to much to make it a special day.

I don't want your pity. I don't want your "cures". I don't want your diagnosis or analysis. I want your understanding. I want you to hear me without telling me stupid things like that is no way to live.... it is a way to live... it is the way I live and many like me live. It is the way our families live. It is not just me who suffers when I am sick... it is my whole family who pays the price.

Friday, May 28, 2010

Hopeful Treatment

I've had some success with infra-red saunas as a source of treatment. Unfortunately, to get one that is well made, has the right kind of heat and will not off gas toxins from the construction materials we are looking at about $3500.00. Over time it certainly would pay for itself but to gather together that kind of money at the outset is not an easy feat for a family with 4 growing children. I have access to one but I only have that access if the King is with me. This is a busy time of year for him that requires much travel so my visits have been very minimal. The massage therapist in the office I work tried an infra-red body wrap at a local spa. The body wrap is advertised for weight loss but she thought it may be helpful to me as I had some good results with the sauna. I discovered that I could claim it as a "wellness" treatment through my husband's insurance so I forked out $75 to give it a try. I've been feeling so poorly since 2010 began I figured I had nothing to lose. The woman at the spa was very knowledgeable and professional. Rather than wrapping my arms as she would for someone interested in weight loss she wrapped those bits up my back and around my neck, I was also wrapped around the middle and my legs. I relaxed for an hour doing nothing but resting, hydrating and sweating. I was amazed at how refreshed I felt immediately after. I felt amazing several hours later albeit tired. She said that I would likely feel tired for a few days but how great my body felt definitely made up for the tired. The effects of the wrap lasted nearly 3 weeks. I was even surprised by my visit from AF as I usually feel like total crap the week before and regularly experience flare symptoms, if not full blown flare. It wasn't until our weather turned from spring to spring snowstorm that I felt poorly again. I will definitely try the treatment again. If I purchase 10 sessions at once than I get a $25/treatment reduction.

Tuesday, February 23, 2010

Spark up a doobie??

So the latest on the fibromyalgia front is that marijuana may help with the pain. You can read the CNN Health article What do you think? Is it something you've tried? Would you consider it?

As the mother of 4 children, 2 of which are teenagers, I don't know how I could start to rationalize trying such a treatment. Yes they are intelligent kids but the fact that a) it's illegal and b) you spend your life teaching them to just say no to drugs weighs heavy on me. I tend to shun any pain medication because of how it affects my brain- the fog, the way my body metabolizes them outweighs any temporary relief I may get from pain pills. I've opted for alternative ways to cope with my pain.

Part of me is intrigued by the possibilities of cannabis as a way to potentially have a less painful life and the other part of me thinks it is something that I couldn't do in good conscience.

Now where are those Doritos...... lol... totally kidding.

Monday, January 11, 2010

I have an hour to pull it together before the kids come home from school. I just want to cry... I hurt so bad. It's a beautiful day and everyone is raving about the weather. I can barely walk from the kitchen to the living room without crying and the stairs nearly kill me. It is getting worse with every day and I'm tired. Tired of letting my family down, tired of feeling like crap, tired of gritting my teeth through the pain when all I want to do is cry. I work 2 days this week and Friday we are supposed to be going to see the Olympic torch run through the next town, we've even been invited to a special breakfast that day. The kids are really excited about it and we are taking them out of school to see this once in a lifetime event. I hate that the things that help me make it through cost money. Sure we have extended health benefits but they have limits to the alternative medicine things we can use and I'm nearly out of my allowed massages, the new year starts in May so that is a lot of months to spread it over. I could have meds for life but I have to ration the stuff that actually helps me a little bit. So frustrated and so sick of feeling like crap.

It's been awhile..

I've have been avoiding this place. I was doing pretty good for much of the fall and started working 2 days a week with the Chiropractor that comes to town from the big city. I managed to hold it together thru to Christmas. I wasn't always feeling great but managed to push through and live life somewhat normally. However, since New Years I've been really suffering. I'm not sleeping, even with the help of sleep aids, I hurt so much when I lay flat and no amount of pillows, propping, heat packs, lotions, etc seem to help. I've been having trouble on and off with my hands, particularly my right one. The other day I was trying to scoop roasted butternut squash out of the shell and could not manage the fine motor skills required to do that simple task. At times I can't open my water bottle or take the foil seal off my yogurt drinks. It's crazy and frustrating. I did get some relief from massage before Christmas when it was really bad. The chiropractor tried to do some treatments with the activator on my arm and hand as I couldn't bear a traditional adjustment. The King ran all the way into the city tonight to get me a new topical cream we saw on a commercial in hopes that it might offer some relief as my heated mittens and Dream Cream were not cutting it. I think the Voltaren helped some as I'm typing this. I guess we will see. The side effects and warnings for a OTC topical cream kind of freak me out so it's not something I want to have to use often. I've been taking Methocarbamol for pain. It's also OTC and while it loops me it isn't as bad as any of the script stuff I've tried. It takes the edge off a bit but doesn't take it all away. I wish there was a magic solution. I'm getting worn out. Day 11 of feeling like crap... no energy and always pain is not fun. I really needed to vent about it so I guess that is why I came here. The weather has changed drastically from the -25 Celsius to the +6 Celsius range which also wrecks havoc with my body. We had a ten degree difference in one day and then it proceeded to go up and down. This week is supposed to be a warm one and then we may head back to the deep freeze. Oh joy... that means my body will adjust to the new temps and then get hit with another whammy. Even the King is feeling the weather change this time and has his own set of hurts.