How has RA changed my life? DRASTICALLY! I see things much different now and do not take some of the things I did during my pre-RA days for granted.
When I was first was told I had RA, I was in total disbelief. I thought the pain in both my shoulders was just old age coming on (I was 50 at that time). I was in denial. I was determined this was not going to stop me from doing what I always did in the past. Well, RA taught me different. I was doing okay for the first year, then in the 2nd year, my mother-in-law had open heart surgery, had complications and so the week of Thanksgiving, I had to pack up her 3 bedroom apartment and put part in storage and move the rest to an assisted living facility which in turn did not work out so I had to pack that stuff up in that same week and move that into storage as well. Then a month later, we had to clear out the storage unit due to her death and that brought on full fledged flareup which I have not been able to get under control in the last year and a half. I think the stress from doing all that and her death was the straw that broke the camels back.
Last year, my doctor tried me on different oral medications in which I had reactions to each of them; then Humira injections this year with severe reactions after the 3rd injection. We just got approval from my insurance for infusion therapy. I am working on getting financial aid to help pay my copay since each infusion treatment is $3500.00. If I cannot get the assistance, then I most likely will not do the infusion treatment.
In the meantime, I have learned to let go of things I took for granted. I can no longer crochet, so I gave all my hooks, patterns, yarn, etc to friends from my office who crochet. Then, just recently, my joints in my lower body started swelling so the doctor said no more walking, it was doing more damage to the joints but he recommended riding an exercise bike. Well, I didn't have the money for one and a friend from work who knew about me not being able to walk, called me and asked me if I wanted her exercise bike. She said it was just taking space in her family room with all her other equipment and she was going to donate if I did not want it. Of course I accepted and now am at 30-40 minutes a day on it. I read or watch TV when riding and hope to get up to an hour a day. On days I'm feeling fatigued, I do only 30 minutes. With winter coming on, I am happy I'll be able to continue it throughout the season.
I work from home now for my company which I really appreciate the fact that I was able to. I have my 8 cats and 2 dogs and husband (who is disabled) for company. I don't have the stress of the commute to and from the office and I can take breaks when my hands are bothering me too much and make up the time in the same day. I love the type of work I do so that is an added bonus.
My pre-RA weekends I would make a "To Do" list each weekend. I would work it all day until late in the evening until it was completed. Now, I no longer make these lists. I've learned that I just have to wait and see what each day brings. There are good days where I can get things done and then there are the not so good days where I have no energy, am in pain and just want to rest. I take naps when my body tells me. So on the upside, I have learned to listen to my body. I have always loved cooking so am trying new recipes. I have learned to use things in the kitchen that are easier to handle. I read more (not just magazines). I've learned to stop and appreciate the beauty in each day. I cherish my good days and draw strength from them when things are not quite as good. I nurture my spirit and I have my faith to help me through those rough spots. I know God will always be here to help me and that gives me strength.
please forgive my typing. I woke up just a bit ago and my hands are hurting today. I know just what you mean about denial. I was diagnosed last November and have the same attitude you did- this is not going to stop me. Until it does. I was nervous that all the things on my list this summer would be too much, possibly throwing me into the flare pit, but soldiered on because I don't know what I shouldn't do until after I do it.
Someone without RA would be sore after going though all you did with your mother-in-law. It sounds like you are a caretaker, whihc makes this even tougher because you have to switch up roles sometimes. That isn't comfortable for me, either. I like showing the people I love that I care by doing things for them. Now I'm looking for different ways to demsotrate my love and have found that I am blessed with loved ones that want to do things FOR ME!
Thank you for listing the positive changes that RA has made in your life. You've given a great project for this rainy Saturday (perhaps the rain is making me hurt more?).
It sounds like you have a full life, just a different one than before RA. I'll pray that your RA is soon under control. We can never have too many prayers or good vibes coming our way! Hang in there and keep focussing on the good stuff! BTW...can I come over for dinner? :) Good cooks make some of the best friends :)
Thank you. I hope you are feeling better as the day moves forward. Are you on oral meds for your RA? I would not be surprised if the increased pain in your joints is from the rain. I have found in recent months that the pain increases when there is rain in the forecast. (maybe I should apply for a weather forecaster position-seems like I can predict the rain better than they can) lol.
I am a caregiver and have been my entire life. I was the "responsible" one when growing up. Sometimes though, it can be a curse because people seem to expect more.
It is a new path in my life dealing with RA. But, I know that with patience and time, things will work out. It has had its twists and turns. One of the scariest was last year when I had my annual mammogram and they found a spot on my right breast. I found out later, it was a nodule and that with RA this is common. I have learned a great deal from the nurses at the doctors office.
I also believe that my pets have helped me. They can sense when I am not doing well and comfort me in their own little ways. They don't judge me when I am not able to do things (however, if I don't feed them by a certain time, that has its consequences).
I intend to start working on my writing. I used to write poetry when dealing with past issues, then as work took more of my time and other things, I let it go by the wayside. My youngest brother has written and has had 5 books published. My sister writes and has had things published on line and is in the process of writing about her time in the navy. I used to write stories as a teenager so maybe this time, I will get them published. RA may affect my joints, but has not affected my mind.
I hope and pray for the best for you. Take care.
Yesterday was pretty much a wash, pain meds and lots of sleep. I hate to lose days like that, but today seems like it may be better so I must look forward, right? I am on plaquenil, ambien to help me sleep at night, and ultracet for the pain. I also take a vitamin D supplemet. You may want to ask for your vitamin D level to be tested (just a simple blood test). They have been calling vitmain D deficiency a "silent epidemic".
My cat seems to pick up on when I don't feel well, too. Funny how animals can be more sensitive than people sometimes, but then they don't have the distractions and responsibilities that we all do :)
Glad to hear you had a better day. You just never know what each day will bring. I do take 800 mg of Vit D and 1200 mg of calcium every day. That was the first thing the doctor told me to do after a month of taking 40,000 mg of Vit d weekly. He also recommende Osteo Biflex and I take 2 of those daily as well as 2000 units of fish oil and 1000 units of flaxseed oil. I take a B Complex and that has helped to eliminate the tingling I was having in my hands. The only med I'm currently on is Peroxicam to help with the inflammation. I take nothing for the pain since the Peroxicam has to be watched with aspirins and the like..
Animals are amazing! They are so in tune with us and know when we need their comfort. I believe people who have pets, have an added bonus. I am no longer able to walk my dogs, but I have a large backyard in which they play in. Mostly they chase the squirrels and the occasional stray cat that comes in. All of my cats are indoor cats so I don't have to worry about them straying or getting hurt. They don't seem to miss not going outside.
It is so interesting how the rheumatologist's differ in the treatment of RA. You've given me some good things to ask my Doc about. I'm not taking any herbal supplements because I'm scared that they may have a negative effect (like echinacea), but the joint med you mentioned sounds interesting. It seems logical to take calcium, as a woman AND an RA sufferer. Ewww, I don't think I like that word "sufferer", but it sums it up, doesn't it. Back tot work today and playing catch up. I so wish I didn't have to, but then...who deosn't wish they didn't have to work. Deep inside I know I'd miss it. After a nice long rest, anyway.
I agree that having a pet is an advantage. They've even proven in studies that older folks fend off depression better if they have a pet.
I agree with your comments about the difference from each providers perspective. The doctor I see does listen and will tell me if I am wasting my time with supplements. I have such a weird system when it comes to medications so I am happy he does not nay say when I have had reactions.
I work from home for my company and that really has helped. If I am having a bad day, it helps to be able to take a break and make up the time later in the day knowing I don't have a drive home after I'm through. Plus, when I am having an adverse reaction to a drug, I feel comfortable being at home.
I agree about people with pets. I feel had my mother-in-law had a pet, she may have fared bettr. She had allergies but I think some kind of pet (even a bird) would've been some company for her.