February 23rd, 2012

I apologize for the overly long delay. I’ve been tired and sore and quite busy again.

Major Medical Updates:

~Went to see an allergist to confirm my latex sensitivity. Still just contact dermatitis, no actual latex allergy. Still have the severe dust allergy.
~Saw a psychologist to asses my mental condition/illness. The preliminary diagnosis, which she’s pretty much certain on but doesn’t want to say for sure until she’s seen me one more time, is Generalized Anxiety Disorder and Panic Disorder. My Depression is situational, or “secondary” as they like to say in Chronic Pain articles. It springs from circumstances rather than any underlying chemical imbalance. Says that everything seems well controlled, which I agree, and that her main recommendation is good self care. I will see her again in May. The extra fun part is she works with my counselor at St. Paul’s Hospital. I haven’t been able to see my counselor for months because I stopped working, just can’t afford it. The psychologist is going to transfer my files to St. Paul’s so I can see my counselor for free until the baby is a year old. There are also a lot of free resources I can get at the Hospital which is also good.

~Baby seems fine. Moving around like a crazy person. I go for my diabetes test in two weeks. Only thing that is out of the ordinary so far is that I “measured large” for how far along I am. In four weeks when I go back he will check again and if I am still big they will send me for an ultrasound. It could just be a big baby, which is my theory. There is also the possibility of extra fluid in the womb which can just happen sometimes or can be caused by GD. Having a giant baby can also be caused by GD. Like I said, I don’t think I have either, I think it’s just big. Both my family and my husbands family make big babies.

~Now for the ranty bit. My baby doctor got my files from my Rheumatologist accompanied by a note. The files state I definitely have Fibromyalgia and not Rheumatoid Arthritis. Which is good, even though I don’t quite trust it because the Rheumy is an asshat. He told my Mom she needed to lose weight, that’s why her back was hurting so much. She demanded an MRI and he refused, so she had our GP send her to a back specialist who sent her for one. Turns out she has spinal stinosis and just went for surgery a few months ago. If he is definitely right and I don’t have RA that’s great, I don’t actually want it obviously. Doesn’t explain why my GP still mentions my RA when I am there and when he wrote me off for my sick leave he wrote a flare in FM AND RA as the reason. The note mentions that the Rheumy was “under the impression” that I was already taking Plaquenil. Which I totally wasn’t. When I saw him last a year ago he told me to get more exercise, that there was nothing he could do for me and to not come back. So now I feel like my Baby Doctor thinks I’m a crazy person. I’m SO SICK AND TIRED of just being brushed off. I just want some straight answers. Is that too much to ask? As far as the Plaquenil goes, turns out that I WAS taking it…almost two years ago…which wasn’t helping, so the Rheumy TOLD me to stop taking it. Now the fact that it didn’t help lends more weight to the “only” FM diagnosis. But how can he not remember what he prescribed me and what he told me to stop taking?? And this doesn’t explain why Celebrex works to a certain degree. If it’s NOT an inflammatory condition how does a major anti-inflammatory help? Unless FM IS a inflammatory condition…I can’t remember right now. Anyways, I’m stuck with my current pain levels. Since the RA diagnosis was “negative” the Baby Doctor did not offer prednisone like he said he might. Which on one hand is good since I don’t want to take steroids when pregnant. But I was really hoping I could get some relief. I’m not going to remove myself from the arthritis groups I am part of, regardless of diagnosis I know people with the disease so I can still show my support. I will stop tagging with “arthritis” and “rheumatoid arthritis” for now though.

 

As far as the last week or so has gone, I’ve been pretty up and down, following the weather as usual. Last two days weren’t too bad because of the sun. The three or four days before that were really bad because it was rainy and cold. Had to bring out the cane again. I’m going to do my best to report every day again, even if it is just pain levels and location. My “nesting instinct” is pretty hard core right now. On days where I feel decent I’ve been cleaning like crazy. My hips and lower back have been pretty stiff and sore but I figure that has a lot to do with the baby. I’m developing a pretty nasty head ache right now. We will see what tomorrow brings. Hopefully I will be feeling less cranky.

Pain: 6.5-7

Pain Management/Meds: stretching, short walk/1 Wellbutrin

Supplements: 1 Vit D, 1 Folic Acid

Mood: 5-7

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February 7th, 2012

Busy day. Could barely get out of bed but did eventually, had to go out with my MIL to find fabric for the window dressing she’s making for the babys room. Found this cute pattern with owls on it in different colours. Then we went for lunch and I stopped at the mall to pick up oranges among a few other things. Walked home. It was gorgeous, just wearing my chords and a t-shirt, didn’t need my sweater. Was completely beat by the time I got home. Rested for a bit. My head was pounding at this point, light and sound sensitivity, nausea. For the first time in almost six months I’m actually stiff. Mid-back particularly painful. Managed to get some dinner together which helped quite a bit with the headache. Then threw some laundry in the wash. I’m sitting on the couch,writing this entry on my phone now, lights low, waiting for one load to come out of the dryer so I can toss the other load in and then I’m crashing. I have physio tomorow but besides that I don’t plan on doing anything. Maybe some document shredding. I can do that from the couch.

Pain Management/Meds: 1 ES Tylenol(I don’t think I’ll sleep without it), 2 Wellbutrin, 15mg Cipralex, stretching, walking

Supplements: 1 folic acid, 1 vit d, 1 prenatal vit, (Omega 3’s are giving me crazy heartburn so I’ve stopped for now)

Pain: 6-9 (weird, I know)

Mood: 7

February 6th, 2012

Sleep has been elusive. I’ve been waking up every few hours. We went out to see good friends of ours for the Superbowl. The hubs and his buddy watched the game. Myself and his wife sat and shared war stories about FM and chronic illness. Was fun but by the end of the night my whole back and neck had seized up, my head felt like it was in a vice and any light source made me want to vomit. So when we got home we organized the budget because it helps both of us relax a wee bit…well only in the sense that we have a plan at least. And then the hubby said to sleep, so I did.

The first three hours was the coma-like sleep that accompanies high pain levels. I’ve been waking up every two to three hours since. Usually a combination of neck and hip attacking me. Hubby seems to be waking up with me more often which I figure is why he seems to “get it” more then he used to. It’s also helpful because he calms me down when I almost freak out because all I want is some sleep.

Keep having nightmares about having to go back to work, always as a cook. Some part of the kitchen always starts to smolder and then catch on fire but no one seems to care. So I leave. They suck either way.

I’m typeing this on my phone…the laptop is too far away…and my fingers hurt. Here’s to hoping I can get back to sleep. Might be difficult with Miss Kitty trying to burrow into my neck. She’s just so damn cute…and so infuriating all at the same time. I do love her so.

Oh yeah…I stopped taking ES Tylenol on Saturday. One at a time wasn’t cutting it for anything anymore. And then two doses of two wasn’t working. I swear it makes the baby sluggish. I also talked to an Aunt who almost had liver failure in the last few months because of long term Tylenol use. So yeah. It’s off the menu.

Hopefully I will remember to update later.

Pain: 9

Mood: 4

February 4th, 2012

Just a quick update before we run out for the evening. I will update about yesterday ASAP as well.

Felt relatively well today, all things considered. Not too sore but exhausted. I slept a good portion of the day. Looked at the sunshine, never did convince myself to go out in it. Still tired and now that I am up and moving my back hurts. Oh well.

Pain Management/Meds: 2 Wellbutrin, sleep, blankets…did I mention sleep…possibly some Tylenol…I can’t remember.

Supplements: 1 vit D, 1 folic acid

Pain: 6.5…but creeping up.

Mood:8

February 3rd, 2012

Woke up at 3am. I tried to not get out of bed for as long as possible but my bladder was about to explode. I swear the Bun jumps on it around 3am every day. Once I was awake I couldn’t get back to sleep. Throbbing was starting in the t-zone again. My arms from the fingertips up to the shoulder blades are tired and achy and sore. They have their own pulse now. This has become a normal daily thing. It’s making me cranky. Mr. Cat is lucky I haven’t strangled him yet this morning. I am also famished and I want a cup of my cheap ass mocha (instant coffee, hot chocolate mix, milk, voila!). The kitchen is all the way over there though and I’m tired and sore and don’t want to move. Going to the bathroom and taking meds was annoying enough. I’ll let the heating pad work some of it’s magic for a bit longer and then get up. Of course I feel like this on a day where I have things to do. I am going to the pool with my SIL, Mom, a good friend with her baby, and the niece and nephew. I’m not really a swimmer…more of a wader…like a hippo. And you won’t catch me dead in a bathing suit anymore…shorts and a t-shirt work just fine. After that the plan is to go to TJ Kiddies which is this baby/kid store that has the most awesome things. The unfortunate thing is that most of it is way out of my price range. Still fun to go look though. I’m undecided as to whether or not the exercises from the physio are helping or not. The small neck stretches do help a bit but the strengthening exercises for my shoulder blade area I’m beginning to think are actually making things worse. I managed to get them done as instructed, one set of ten for both exercises, twice a day, for a few days earlier in the week. After those few days I felt like I had been hit by a truck. So I stopped altogether for a day. Only did them once a day the next two days. I’ll try twice today and see what happens.

As far as the Bun goes, she seems like a happy little camper. Wiggling around in there a whole bunch. On days like yesterday where I was up and walking around (light housework, feeding myself and the hubby) I don’t feel nearly as much movement, which always makes me paranoid. When I spend the majority of the day laying down it’s like she’s having a party in there. She was 13 oz. at the 20 week ultrasound, which is apparently 3 oz. heavier then the average at that stage. I wonder how much they grow in two weeks? The stretch marks are starting, different colours even! There’s little red ones and silver ones! Hehe! I suppose it’s just a testament to my personality that I am thoroughly entertained by this. I’m becoming a milk factory already. Luckily this only happens in the shower, no leaking in public as of yet.

I’m going to have a snack. I think the heating pad is going to put me back to sleep again, one of the things I love about it. Will do my best to remember to update later.

Pain Management: 2 XS Tylenol, neck stretches x 1, shoulder/upper back exercises x 1, heating pad, 1 Wellbutrin

Supplements: 1 folic acid, 1 vit D

Pain: 8

Mood: 6

Letter to those Without Rheumatoid Arthritis

I came across this letter today and I loved it. So please go read the original if you like. My version is below.

[About RA] Letter to those Without Rheumatoid Arthritis | RA Chicks.

My Letter to those Without Rheumatoid Arthritis and Fibromyalgia (or auto-immune dysfunction as I like to call it)

Dear Everyone,

I am posting this letter to help you understand my feelings as I deal with my “invisible conditions” and the changes they continue to bring to my life.

I am scared. I don’t know what the future holds for me. Will I end up crippled and in a wheelchair or will I be one of the lucky ones who have very little joint damage? Will I ever be able to be mostly self-sufficient again or will I have to rely on others more and more? If you find me being quiet and reflective, please don’t think I am upset with you. I am trying to sort out my fears. Likewise, please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for about fifteen years now, that’s half my life. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker than ever. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome to.

I am angry. Arthritis and Fibromyalgia has taken so much away from me. I can no longer do many of things I once enjoyed doing. Decorating cakes and making little pastries is literally impossible some days. Other days I can get it done but I suffer for it for days if not weeks. Going walking for hours, once my main stress reliever and “me” time is out of the question. I love writing with real paper and a real pen, a nice pen. It has been ten years since I could do this for any length of time. Even typing can do me in after fifteen minutes or so. I sometimes have difficulty just completing simple tasks, such as opening a jar, showering, or lifting things. If I appear angry please understand it is the disease I am angry with, not you.

Please understand that chronic illnesses are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying, “But you did it before!” If you want me to do something, ask if I can and I’ll tell you. I also want you to know that these conditions move around. Yesterday my whole body was throbbing; today it is from just under my shoulder blades up, who knows what it will be tomorrow. I am terrified that I won’t be able to run and play with my soon to be here baby. That I won’t be able to pick her up when she needs it, or even more terrifying, that my arms or my legs will give when I have her in my arms and I will drop her. The thought of changing diapers, doing up tiny buttons and snaps and folding all the clothes and diapers makes me cringe. I swear my body hurts just thinking about it. Do not take this to mean I do not want this baby and do not tell me that “you’ll be so busy you won’t notice the pain”, it’s bad enough that my own doctors tell me this.. These conditions are real, not a construct of my brain. I have the blood tests that say POSITIVE on them, regardless of what my doctors try to say. I know how I feel. I do not like feeling this way. I do not wish to be doted upon. It’s a lot of the reason I become more and more of a recluse. I don’t want the sad looks I get from people, I don’t want to see the pain in their eyes, I don’t want them to see me when I can’t open a jar of jam and more importantly and exponentially more hurtful is the disbelief in their eyes.

Please understand that if I say I have to sit down / lie down / take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something. Arthritis does not forgive. Also, if I ask for your help with something generally it is not because I am being lazy but because I really need help with it. It is not my goal to be a diva and have people waiting on me hand and foot. In fact, it’s rather embarrassing for me to have to ask for help with things I’ve been able to do up until my illness. For awhile I wouldn’t ask for help and it would make me feel worse later. I’ve learned I have to deal with the embarrassment rather than putting myself through more pain. I still haven’t quite come to terms with this yet, so there will be times I will need you to remind me that I should slow down or ask for help. Please do it gently, even though I need to hear it it hurts me deeply every time. It’s not your fault, so if I look dejected just know that it’s not you personally I am upset with.

I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you have the flu, tired, achy and sore. Please keep that in mind. Please don’t tell me you know how I feel. You don’t. Don’t offer me sympathy; I don’t want your pity. But do offer me support and understanding, which I appreciate.

Please don’t assume you know what is best for me. Arthritis and Fibromyalgia has affected my joints and physical body, not my mind. They say that Fibromyalgia can effect the memory, and I will admit to being more forgetful then I used to be. This I believe is due to chronic pain NOT a direct effect of either of my conditions. I am capable of making my own decisions. If I make the wrong decision, it is I who has to deal with the consequences. Don’t tell me how Aunt Martha cured her arthritis by drinking vinegar or your friend in Tibet that drinks an ancient tea or any other supposed remedy. I have done much research and I keep up on current treatment options. I speak with my doctor regularly, am working on finding specialists who will listen, if there is a possible cure out there, I will know about it.

Please understand that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.

I still want to be part of the “gang.” Please continue to invite me to participate in activities. I’ll decide if I am capable of it. You may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts when you exclude me. Maybe I can’t skate with everyone else but I can bring the hot chocolate and watch. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don’t take it personally. Please do pick up the phone and call me, or email me. With these conditions comes some pretty heavy depression as more and more things get stripped away. I truly appreciate human contact, even if it’s just a two minute phone call to say hi. It reminds me that I am not invisible and still part of the land of the living.

Finally, please remember that I am the same person I was before arthritis; arthritis doesn’t change the heart and soul. I still laugh, I still cry. I still love and I still hate. I am me, I am not my disease. I am more compassionate to others with similar aches and pains and I am a better person because of it. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, just like you.

With love,

Me
February 2nd, 2012

February 1st, 2012

How did it get to be February already?

Feeling somewhat human. I plan on laying on the couch for the day. I was productive yesterday. My headache hasn’t left. Back and shoulders aren’t too bad. Jaw and teeth hurt again though. Hands and arms were quite bad when I woke up, but are loosening up a wee bit. Woke at 3am as usual then went back to sleep and woke up at 7am. Might be nap time soon. After a home made cheap ass mocha and some giant burrito for lunch. Will update as usual later.

Pain Management/Meds: 2 ES Tylenol, 1 Wellbutrin, heating pad

Supplements: 1 folic acid, 1 vit d

Pain: 7

Mood: 7