Its the same thing every year. From October to about the end of April I dread.
Every year I see it coming and every year it is bad. These past 2 years have been the worst. Last year I was in so much pain for so long that I didnt realized it until I was on Humira for a while. Now this Feb. I had to get off it because of a bad cold or chest infection and now I will go back on it. But I am still not comfortable taking a drug like this. Is that crazy even if it helps me a little?? Do I "have my Life Back"? No. I still cant work. I still am in much pain. I am about to give up on my doctors and conventional medicine all together.
I am not back in the pool yet because I have been playing phone tag with my PT clinic which sounds like they have cut there days down to only 2 days!! Alarming. So first thing in the morning I will wake up and call them again.
I have to go to my Rhumey on Tues. I am not looking forward to that and I have no questions for him or expectations this time. He wants me to loose weight. I want to loose weight too but I cant do aerobics anymore or hike or skate or run or dance or any of the things i did that kept me slim. I can swim. It does not burn anything off!!! I watch what I eat. All these alergies all these special diets to avoid wheat sugar dairy nightshades etc. Not helping.........ick. I dont know what to tell my docs. they want me to loose weight and its like they dont even want to see you or talk to you if you are not doing that. Tired of trying for so long. I just want to walk and dance again. Not happening. People friends and family make excuses for me. Menopause. Middle age slow metabolism. The medication you take are making it hard for you to loose weight. Thank you. Your sweet. Bless your hearts.
But here I am like a little mama cow just wanting to sleep til summer comes. I want to go back to Arizona.......and stay there.......until it gets too hot. Then come back home for our beautiful perfect summers that happen from the 5th of July til the end of Sept. when the Puyallup Fair is over. Wouldnt it be lovely to be a snowbird? :) But right now I am feeling like a Canary in a coal mine. And boy am I ever being whiney right now. I usually try to stay positive but I deserve to whine sometimes too. At least when I talk here, you know how I feel.
I am wondering, at this rate, what my prognosis is? I need heat and dry weather.
So sorry you are having such a hard time each winter! If this has happened two years in a row, it is VERY obvious your current meds aren't doing the job. At this point don't talk to your rheumy about changing treatment: demand it or find someone new. There are SO MANY meds out there, and so many combinations to try. I don't know what you've all been on, but you can't have tried them all yet.
I know that you, like me, live in the NW where conventional meds get the side-eye. But please don't give up. Even if alternative treatments help your symptoms, the disease will be ticking along under there doing damage. Damage is irreversible... you REALLY don't want it! Trust me!! :)
As for your doc emphasizing weight loss to the exclusion of other discussions: what a jackass. Personally, my disease has stayed pretty much the same despite my weight fluctuating wildly, anywhere from 120 lbs to 200 lbs. The fact is, if you feel better, it's so much easier to lose weight. Don't beat yourself up. It sounds like you are doing everything right. At some point, you need to tell your dr. to shut up about your weight, and talk about your treatment plan. Even ask to put it in your chart (yes you can do that!!) to not discuss weight issues. If your doc can't abide by that, find a new one. It's not worth it with this severe autoimmune disease to spend your appt. quibbling about weight when your disease is out of control.
I hope you have a cozy night's sleep and wake up to some great replies tomorrow :)
clearly you must live in WA? and are a snowbird....those who do not know that term...people move here in Mt Shasta and all along the Cascades from late Spring till late summer early fall than move back down to southwest. Wealthier have homes others just camp out here in the natl forests.
I agree with you about winter here in snow country but this winter we never got snow really down this low...not one snow blow at all or shoveling for me. Usually i have many many days in feb and january of at least shoveling and few snowblowing since so deep. I rather go into hibernation and sleep till March when temps turn to high 50's during day but lows are still around freezing. Mtn is beautifully covered in white!! Redbud and mustards down below start or are in full bloom!
I agree about heat and dry weather but hate to say this...all stats say that once we live there full time, winter will again hurt our joints as weather changes so right back at having winter pain...but i still say pain without snow is better than pain with snow!!
A big reason why it’s so hard to lose weight with our condition and ones similar is the high inflammation levels we carry. I did find for me that weight training helped a lot with pain and taking some weight off. While free weights are hard to use I found using a total gym a lot easier to use and I even do stretches on it. It makes day to day living a whole lot easier for me. They are a little high cost but you can find similar machines cheaper out there.
I Understand...My very good looking son who is already in therapy 3 times a week from getting hit by a car. He was on foot. He's a mess from head to toe, only has energy for the therapy then comes home and sleeps. The cold really hurts him too and this morning, upon waking, it was - 3 . . . again! He hasn't been this rashy in a very long time but the stress in his life is high. I wish I could change that for him but he wouldn't want me to. He's a tough guy and I let him have that. So much has been taken away...and I hate seeing/knowing that he's hurting and worrying about how much he'll be able to recover. Then he has this terrible psoriasis breakout! I just wish he'd catch a break :o(
I know how it feels to have a doctor tell you to lose weight, been there. Last one I told to jump inside my body, take a walk in my shoes. One day! And you tell me how I'm suppose to get exercise out of this broke down body. I've been using and have been very fortunate so far to get, compassionate specialists. My son has also had that good fortune. This time of year he's cranky around the house but gets s little fishing done and providing for the family and that makes him feel great.
I'm rambling and probably not doing you much good.
You deserve a rant and I'm glad you got one. You did good!
I started having awful, zero energy winters the year my father died. He went into the hospital in November and died at Christmas. My grief was all consuming and I drowned in it. by the September following that winter I felt like I was dealing pretty well with my grieving process, but by November I again found myself paralyzed with exhaustion that felt much like the depression following Dad's death.
I bought myself a light box.
Within a week I felt like my normal self. I can feel the exhaustion come on me as early as September some years but with my trusty light box I trick my mind into feeling like my Summertime self. Having to live with pain and limitations sucks, but adding "fatigue" (what an inadequate word) into the mix can make me feel like never leaving home even if it is not my normal disposition. I STRONGLY recommend trying out light therapy, and getting checked for vitamin D. You can buy "GoLight" boxes pretty cheaply now. Blue works best but if you have cataracts use white lights, which is what I do.
I also have found that I can get super fit fast by jogging in the pool. The water creates terrific resistance and muscle builds quickly. I jog forward, then backwards for a lap, then switch to jogging sideways in one direction then back in the opposite. You can really build up muscle in your hips, knees and ankles with the sideways laps and you can really work your feet jogging forwards with a heel to toe gait. I really feel my back when jogging backwards. It is important to wear water shoes to do this or your feet will get torn up. I feel awful if I miss too many days doing this.
I hope you feel like Spring soon. The season of hope.
I have found a low carb diet (like Atkins) to be very effective for weight loss without exercising. (Age 55 female) good luck to you! Read “the art and science of low carbohydrate living” or “a new Atkins for a new you” or Gary Taubes “why we get fat and what to do about it”. All are available on Amazon.
I hate Wisconsin winters, but I turn on my gas fireplace every morning, my husband knows I need the warmth. I try to get away for some sunshine in Jan or Feb - even if it is just a weekend. It helps mentally.
Low carb (like Atkins) works for weight loss without exercise. Wisconsin winters are horrible and my worst time of the year. My gas fireplace that circulates warm air with the flick if a switch is my best friend. Good luck!
Whine away. I feel exactly the same. Right now my right foot is killing me and just to make matters worse this weekend I developed a tooth infection, have appointment today with dentist. Drs also say loose weight, tell me how, I can't barely walk. My back is also involved. So, there you go, two of us whining with just cause. Chin up things are bound to get better.
Where do you live? We are in British Columbia, Canada.
I'm so sorry. I can partially feel your pain (pun intended) although I am able to move and get around and work out the pain. I wish you could go back to Arizona is there anyway for that to happen? I actually moved to DC over a year ago and when I was in Florida I had almost no pain. I really would love to go back, but my husband's job keeps us here. Good luck, I wish there was more I could offer. But my truest empathy I do.
Hi waterfairy! I totally understand.....I too need to lose weight but the pool seems to be the only "body friendly" thing at this point. Is there a water aerobics class you can attend? Found one about a year ago and loved it! Need to find one in my new city.... Hang in there!
I feel your pain, and understand what you are saying, every part of it, really! . It's hard being in pain every single moment and not being able to do much, I am in the same boat. I even want to be a snowbird too and go back to western Ny for the summers, it helped soo much with my inflammation and pain and then back here to Fl for winter... ohhhh dreammmmmmm..
I know what you are saying about the weight too, all we can do is try. I am going back to water aerobics once it gets really warm here, it does help and I can do it at my own pace so hopefully some weight will fall off then also. I know I have to move so swimming is the easiest for us to do, well easy as it is with so much pain.
WaterFairy, just hang on, and keep taking one step at a time and know there are others who understand what it is like to go through what you right now. I would like to encourage you and listen, stop by my page. We can help each other. Notice I am online now, almost 4 am, yep, pain, and weather change more humidity yukkkk.
It is so hard to remain positive and we all need someone or somewhere to complain, because living with constant pain is very hard. If I keep it inside I get depressed. My husband is that person for me. We now can joke about it. He’ll say "so where don’t you hurt today?"
I also just write it down. It seems like when I get it out I can move on.
I am struggling with weight also. Is this part of the disease?
I am overwhelmed and feel better with all of your support. I tend to keep things inside and try to be positive and cheerful for the rest of my friends and family but that is because they ....well .....each of them handle listening to me in different ways. But I do ask for help and I do say no- this is a rest day for me or I have to go slow today. So finding that I can let it all out here on this site has been great for my emotional and psychological well being.Thank you everyone.
anytime Waterfairy, yep this is where we can totally be ourselves and take off that mask that we tend to wear everyday .
Daluvsew, Yes, living in pain is sooooo hard, I agree and trying to explain to someone that you have joint pain or low back pain, most people just dont get it and tend to respond to us, haphazardly. I have had people say to me about my back pain " oh just take an aspirin", gee if that worked I dont think I would have a spine stimulator and still on pain meds that some cancer patients take. LOL I dont know about you all, but sometimes the pain gets so out oc control I actually vomit. It's awful.
ON the weight thing, well I have always been overweight but not to this degree and it is so hard to exercise to any high degree like I used to. I am going back to swimming, but what is weird to me is that since I had my knees replaced I cannot get them to move in sync so rather hard to swim any laps, I do water aerobics and then slowly and for about a half hour. All we can do is eat the best that we can and try to get some activity in.
@sunshine - I go to a PT and get pool therapy twice a week where I exercise walking, bicycle laps in deep end with noodle upper body resistance and balance exercise as I have a TBI also. But I will look into the water aerobics classes at my local community pool. thanks.
@pabu - I hope your foot stops hurting and your tooth gets better. I live in Puget Sound area in Washington. I have some friends in your area. I know you have similar weather as we do. Yes , there are good days and summer is coming!
@ ircjvi -Atkins. I will look on my Amazon for that. I didnt think of that. The caveman diet too i forgot about. Very similar to Atkins. Its actually meat fish and green veggies that are not starchy. Thanks.
@Maemae - My husband and I are trying to work out a way I may be able to go back to Arizona next year and my girlfriend that lives down there wants me to come and stay with her. She said she wants to build what they call a casita in back of their property. Like a mother in law shack is how she described it.
@sassygrl - I am sorry to hear about your dads passing.
I have a light box but I do need to get it set up and use it consistently. That I have neglected this year. I also take vit. D. My rhumey put me on that right away.
I do walking backwards and forward in the pool with water shoes when I go to swim therapy appts. I need to go faster and more often.
@ siskiay - I am with you! I want to sleep hibernate from Halloween til May day myself. What gets me is the humidity we get in the winter. with the rain. cold and damp. I am not a snowbird yet but I want to be. This year was the first year I ever went down to the desert. I have to go every year if I want to be an official snowbird. We are not set enough for me to do that yet. but maybe....here hoping cause 80s to 90 % humidity is not for me. perhaps I could just live in a trailer down there and come home in the spring summer and part of the fall. But yes I know your are right. All states have a season that does not make us feel so good.
Yes it rains so much here but it is so green and so beautiful. The mountains are beautiful, aren't they.