I haven’t written a blog post in quite a while. It’s easy to write about quilting, but this post is about my health. Someone once told me that if I wanted people to read my blog, not to post about health issues. I don’t know whether or not that’s true, but it is what it is. Over the past year, Ive had problems with moderate to severe pain throughout my body. Some days, fatigue would overcome me, and I’d spend the day on the couch. Time and time again, I went to my primary care physician for help. He just kept telling me that it was my age, changes in my family (kids going off to college), hormones, etc. I finally insisted he refer me to a rheumatologist. By April, I’d been diagnosed with Rheumatoid Arthritis and Fibromyalgia. Both are autoimmune diseases. RA attacks the joints, and Fibro attacks the muscles. It’s no wonder I was in pain. As the rheumatologist has worked on finding the right balance of medications, I’ve had some very painful days. There have been nights that I couldn’t sleep, because it literally hurt to lie down on the bed. I’ve had days that I couldn’t stand on my own feet. The depression and despair that goes with this, have been another issue to deal with. The summer heat (it’ll be 108 here today) has been extremely hard on me. I don’t much like being limited by my body, and I never know if I’m going to have a good day or a bad one. Physically and emotionally, this is hard. As it is with everything, there’s always good and bad.
On the up side, with the latest increase in dosage, this past week has been one of the best weeks I’ve had in months! I’m also blessed with some special friends who have kept me from crumbling in tears (most of the time), and have encouraged me as I get used to living with these issues. Unfortunately, I’ve also had some friends who’ve simply fallen away. As painful as this has been, it’s all part of life and figuring out what’s really important and who I can count on. I’m not a sit still sort of person, but I’m learning to be. When I’m tired, I rest. When everything burns, I take time for a swim. When I’m down, I put on good music, do something I enjoy, or call a friend. The biggest change I’ve made, is that I resigned from selling quilting machines. The physical requirement of working shows and setting up equipment is just more than I can do right now. Of course, I still need to earn some sort of living, so I quilt for customers. This is one of the primary coping tools that I use when I’m not feeling well. There’s something very soothing about the hum of the quilting machine and doing something creative, that makes everything else just easier to live with. As I have had to close some doors, many others are opening. My customer base continues to grow, and I’m meeting some awesome people. I’m quilting more for myself, as well, and I’m discovering fun, new techniques!
If you are one of my A-1 Quilting Machine customers, know that I’m still here for technical support. Many of you have become friends, and I hope we’ll stay in touch. If you have RA or Fibro, I’d like to know what you are doing to cope with the changes in your life.
I’m really sorry to hear that you are going through all this. My good friend in LA also has RA. She had such bad reactions to the meds that she went the alternative medicine route. She gave up wheat, tomatoes, acidic fruits and other acidic fruits. She’s been controlling it like that for years. My allergies had gotten out of control over the past years and Carla B. recommended a low acid diet for me too and it has worked wonders. It’s a little difficult because I am allergic to some of the “good” foods (eggs, dairy) but cutting out the soy, tomatoes and acidic fruits (everything but watermelon and blueberries) has been almost miraculous. I don’t know if it will help you but it might be worth a try. It would mean no caffeine, sodas, tea or coffee either. Giving up tea was really difficult for me! I hope you find a good treatment program that works for you soon.
I have thought of you often, Vicki, knowing you have severe allergies and how limiting that must be. I don’t eat a lot of acidic foods, but I do love my morning coffee! I appreciate your suggestions, and I’ll start watching my diet a little more closely. It can’t hurt!
Sending big (((hugs))) to you, Lynn … I don’t know your battle, but am empathetic. I only have the RA aspect .. plus COPD and some heart problems that we are still searching for the answers to. I know this will sound “sexist” but when I FINALLY changed to a female Dr things started happening immediately and aggressively! No more looking at me like “it’s just a female problem” or hearing the “yeah, yeah” when he’s not listening to you. Enough of my diatribe! I’m having an angiogram tomorrow kind of as a “last resort” thing since we’ve tried all the non-invasive things the GP, Cardio, Pulomonary guy, even dermatologist have thrown out there.
I’m wishing you great good luck with your “new” doors and know that I’m coming through one of them soon.
Sammi, I appreciate the cyber hugs. My primary doctor is male, and he refused to believe I had RA, and he wouldn’t discuss Fibro at all. I finally put my foot down, and I got some help. Sad isn’t it? It really isn’t all in our heads! I hope that everything goes well tomorrow, and that the docs find a way to help you, too! Please let me know how things go.
Lynn, I will read your blog, whatever you are posting. As another chronic pain sufferer, I understand where you are coming from. My doctor won’t even discuss the word, fibromyalgia. And I don’t know if that is my problem or not. I’ve been doing better lately, and I attribute it to my chiropractor, who listens & does not give up on me, or treat me like a whiner with fake symptoms, and my massage therapist. Hugs to you, you sweetie.
Thanks for sticking with me, Randi. I knew you’d struggled with pain in your shoulder, but I didn’t know you were still having problems. If your doc won’t listen to you, go to someone else. Be firm, girl! Hugs right back!
I’m so sorry about your health issues Lynn and hope they have your meds adjusted now. I’m off from work today due to severe pain from degerative joint disease in my right knee. Sometimes our bodies rebel and we don’t have to like it but we do have to deal with it. Good luck to you and I will add you to my prayers.
Dang our rebellious bodies anyway! I appreciate your prayers, and I hope that your knee gets better. Pain is a bugger!
I’m only a phone call away, my friend. You are an incredible person, and I have confidence that you will find a new balance in your life. Take care of you.
You are truly one of the best people I know, Carie! I don’t know what I would have done over the past several weeks, had you not been around to help me deal with things. Thank you from the bottom of my heart! You know I’ll be calling! 😉
Hi, Lynn. I am so sorry that you are suffering but glad that you have a diagnosis and have found meds that are working. I was diagnosed with fibromyalgia in 1995. I could not tolerate any of the meds the doctors wanted me to do so I just reconciled myself to living with it. Massage therapy helped some. When I was able to retire and lighten the stress load that helped immensely. I’ve learned to listen to my body and whenever the stress level goes up the pain and fatigue kick in. Getting out and walking or swimming and losing some weight and trying to eat healthy has also helped.
I too had friends that just didn’t get it – even when I referred them to websites or gave them printed materials. So I just didn’t get them anymore.
Keep posting – we’re here for you.
I’m sorry that the meds didn’t work for you, but I’m glad that you have found other ways to cope. I’ve been seeing 3 different doctors, and all of them have said to cut down the stress in my life. That’s not an easy thing to do sometimes, but I’m working on it. I like your response to the friends that just didn’t get it. Sometimes, I guess, people are just too caught up in their own struggles to help others. So be it. Thanks for being here for me. I’m here for you, too, should you ever need a shoulder to lean on.
Hang in there Lynn. As you say old doors close as new ones open. We all have some sort of cross we deal with … so supporting each other seems the natural thing to do.
Continue to explore your options and know we’re here.
Support isn’t natural to everyone, but fortunately, it comes easily to others. I’m surprised at how many people have shared with me, their silent struggles. We put on the smiling face and keep on trucking, don’t we? Sometimes, though, we need to crumble a little bit and share our struggles. I appreciate you, Deb.
Hi Lynn, I can’t be much help as I don’t suffer from either of those physical ailments. However, I can offer you support as a blog reader. I’m thankful that you finally found someone to diagnose your illnesses and get you started on the correct meds. Hopefully you will start feeling better soon. Keep us posted and best wishes for your continued improvement.
Thanks for being a supportive blog reader! I’m constantly amazed to hear about people I don’t know that read my blog! I appreciate your good wishes, and I hope to have more fun stuff to read about in the near future!
If you havent read this lately, please do:
http://www.butyoudontlooksick.com/the_spoon_theory/
It helps me more than almost anything.
Thanks for sharing Lynn….. and do what you need to do to take care of yourself first, others after that. And if your friends dont “get it”, it is time to “get” new friends!
As for your blog? It is YOUR blog. Write whatever you want. Your friends will continue to love you for it. What? You are not surprised I said that??? lol
Gayle
Gayle, thanks for the chat the other night, and for your continued friendship. I appreciate being able to count on you to always be honest with me. I’ve read your spoon theory post before, and it really spoke to me when I did. Thank you for reminding me to read it again. As for being surprised at what you say? Nevah! 😀
Lynn:
I can’t believe it – but we share the same issues. I have fibrro, severe osteo arthritis and one other pain related spinal issue. I too have never posted about it much because I felt, somehow, embarrassed. Yes, the pain is un-nerving at times and, for me , one of the hardest parts is not always knowing when I will have a good or bad day. I over did cleaning last Sunday and spent Monday in bed unable to barely move. I too am struggling to figure out who I am now – what I can and can;t do. Last year Houston was a real introspective, disheartening thing for me because I simply can’t do that much in a day. I was back at the hotel by 3 or 4 every day. I feel robbed of the life I knew and of the person I once was – they have still not gotten my meds figured out yet … the “you don’t look sick” part is so hard too – I am working three days a week now but may be forced to go back to full time – and I just don;t know how I will manage that. I am praying that it won’t happen. Hang in there – enjoy the good days and try to get by the bad ones – even though you may want to scream from the pain at times. You have my email. Blessings. Marie
Wow, Marie! I had no idea you were struggling with the same things, but I’m also not surprised. We have always had a connection. Remember when we first met in Houston? I hope you don’t have to return to working full time, and that you can also get the help you need. I know very well, that feeling of wanting to scream from the pain! Scott says that I cry a lot in my sleep, and that I talk about how much it hurts. When it comes out in our sleep, that says a lot about what we don’t say in our waking hours. Your ability to continue to be so creative, is of great encouragement to me. I’m here for you if you need someone to talk to. Hugs to you, my friend.
Hey Mrs. Lynnie, I’m so sorry to hear about your diagnoses. I don’t know if you know that I also have fibromyalgia and osteoarthritis. The fibro (at least the chronic fatigue part of it) is greatly helped by taking ATP. As Sammi wrote above, I found a great deal of help by seeing a female rheumatologist who has no patience for doctors who don’t “believe” in fibromyalgia.
Good luck, my friend … I’m very glad to read that you’ve given up selling machines, as that is just “too much sugar for a nickel”, as my Mamaw would have said. I know you will stay busy and cheerful as always … take care of yourself and keep your chin up!
Much love and many squishy hugs,
Linda
Linda, my Texas Sistah! You always say something to make me laugh! We had wise Mamaws! I didn’t know you had Fibro and OA. I’m amazed at how you continue to do so much! I think of you often, and it always brings a warm smile to my heart. Thanks for the squishy hugs. They are the best!
Lynn,
I am so sorry you are not well. I truly hope you find a path that eases your suffering. Unlike your other comments, I am ridiculously healthy despite my bad habits. But I did watch my mother go through hell trying to get medical professionals to listen to her. Keep banging your head on that brick wall until you find a Dr who will listen to you. It is what I learned from watching my mom’s struggles. I will not put up with a Dr that talks down to me or doesn’t listen. Be persistent and do your research.
Thinking good and peaceful thoughts,
Terri
Good morning Lynn,
I can empathize almost completely. I have Fibromyalgia and RSD/CRPS(Reflex Sympathetic Dystrophy/Chronic Regional Pain Syndrome).
I got hurt on the job in 2005 and herniated a disc in my neck. I’ve had 2 surgeries, which were supposed to fix me but only led to the fibro and RSD.
If I overdo, I pay for it the next day; so I’ve learned to moderate my activities. It’s a long road we’re traveling, and it has it’s bumps and potholes. But it’s nice to know we’re not alone.
I have a female pain mgmt dr. who refuses to believe I have fibro. Even though a rheumatologist diagnosed me. She says I don’t present like a fibro patient. Alrighty, then. What am I supposed to do, crawl in on all fours or be wheeled in on a gurney?
Since I’m in the middle of a workers comp case, I don’t want to switch doctors right now.
Lynn, if you need to vent, feel free. I’ve done it and have gotten some great support from MQR members.
I know the heat can be so debilitating. Just take it slow and keep on keepin’ on.
Lynn, I also struggle with chronic pain and fatique. I was recently diagnosed with fibromyalgia although that doctor refused to treat me after we couldn’t agree on the proper medicines. I simply couldn’t take Cymbalta and when he prescribed that plus 2 other antidepressants, we had to go our separate ways. The next doctor didn’t “believe in” fibromyalgia but had no solutions nor diagnosis for me. My next doctor, who I went to over a week ago when I could barely get out of bed, prescribed alleve and pain killers for my immediate problem (which is much better) and also prescribed Savella for the fibro. So far, I don’t have too many bad side-effects from it, but it’s too early to tell if it’s actually helping. I try to exercise, stretch, and eat right, but sometimes it seems the exercise makes it worse.
I think the worse part sometimes is when the doctors just seem to blow me off and won’t take me seriously. Also when friends look at me like they don’t really believe me.
Friends from high school wanted to do a campout like the “old days” and couldn’t understand why I couldn’t possibly sleep outdoors on the ground overnight.
Sorry I’ve written a book. But remember, you’re not alone!! Ever!!!
Lynn, I was diagnosed with psoriatic arthritis (which is first cousin to rhumatoid arthritis) in 1984. I gradually learned how to live with the fatigue and pain, but it was a struggle that never got easy. In 2000 I began taking Enbrel, which has halted the progress of the disease. I no longer have painful flares where new joints get involved. But I still have a real problem with fatigue. All I can tell you is you’re on the right track: get a dr. that listens to you and takes you seriously, do something that makes you happy every day, and keep your priorities straight. I find it helps to think of my energy as a bank account: I have only a limited amount to spend every day, so I have to be careful what I spend it on. And in the grand scheme of things, your health, your family, and the things that make you feel good about yourself (like quilting) are the most deserving of the expenditure (in my opinion). And anger and self-pity, although justified, don’t help you or those around you. Oh, and don’t hesitate to ask for help when you need it–most people WANT to help, they may just need for you to tell them how they can.
Lynn,
I’ve never met you-but linked to your blog from MQR. I’m so sorry that you’re having all this physical trouble. Have you had a test for Lyme disease? We live in a Lyme disease belt here in NJ, and I know many people that have been diagosed with a multitude of autoimmune problems(RA, lupus, etc.) only to find out later that the root cause of everything was Lyme disease.
God Bless.
Jill Kerekes
Lynn, I’m so sorry to hear about your diagnosis. I AM glad you have a doctor that listens! That is priceless! I loved meeting you in person at Road to CA..but I can TOTALLY see how that would be taxing…even for someone who does not have any health issues. I just purchsed a used long arm local to me..so I will be your AZ competition! HA! I will let you know when we go thru your neck of the woods this fall. If it works out, I would love to take you to lunch…
Dear Lynn
I too have arthritis. There isn’t a joint in my body that doesn’t ache to the point of tears. My oldest daughter suffers from fibro so I know what you are going through there.
Please know that I am your friend and am here for you, either a phone call for moral support or I can come by and help out in any way you need me.
Lynnie, I’m always here for you. You know I can relate to the pain. I’m sitting here right now with an ice pack on my neck. I’ve taken to using ice so I won’t have to take quite so many pain pills. I’m really hoping that health insurance will somehow become affordable and the first thing I’m going to do when I get insurance is go to a new doctor. I’ve started taking ATP-20 that Linda recommended, but haven’t been on it long enough to see a difference. One can always hope though. And I KNOW I don’t eat right….I really should work on that.
Remember when you tried to get me to walk on your back? I thought we were both going to pee in our pants. I get my grandsons to walk on my back for me and it feels soooo good.
I’m glad you shared on your blog about what’s going on with you. As someone else said, it’s YOUR blog and we read it because we care about you – all of you, not just your beautiful quilting or your quilting businesses. As a new A-1 dealer I feel cheated out of really getting to know you since you are sorta leaving the fold, but know that you have loved and cared for your customers and will continue to do that, so I admire you for what you have done in our industry and what you will continue to do just by your positive influence. I wish for you many many happy quilting days, good therapy days, as well as the days you just need for yourself, whether it be to walk away from the quilting or just take time between customer quilts to quilt for yourself. Life is short, too bad we learn that later in life or we’d all chose less stress wouldn’t we? Will continue to check in every now and then to catch up through blog-ville. My thoughts and prayers are with you. Karen O in TX
Hi, I have Mixed Connective Tissue Disease, with the primary symptom of RA. I also some other issues connected with the diagnosis. Please read The New Arthritis Breaktrough. It is wonderful. Lots of information. It is based on antibiotic therapy. Sounds hoky, but that is what I am on currently, and had done wonders. Feel free to email me with any questions. I have a couple of websites you can visit also.
I am so sorry to hear you are having health issues but happy that you found a doctor that will listen to you, finally! I have several family members that suffer from various auto-immune disorders/diseases and I understand (as best as someone who doesn’t have those things can) the frustration and pain you must be having.
I hope you will find more good days than bad and that you revel in those good days in order to hold you over when times get rough. It sounds like you’ve made some good changes for you.
Enjoy life! (I’ve heard told it’s better than the alternative. LOL!)
Lynn,
I’m so sorry to hear of your health issues. I’m so glad you insisted on a referral. It sounds like you are on the right track now with the right meds. I hope that it continues to improve and you will be able to do the things that you love doing. Big hugs.
Oh girlfriend I’m so sorry you’re going thru this, but so glad you have a doctor that listens.
I was diagnosed w/Chronic Fatigue + Epstien Barr syndrome back in 95 after being told by my previous doctor to go to therapy I must be depressed. I went to therapy and still hurt all over! Finally had to bypass my insurance and pay out of pocket to see a doctor that would at least do the blood work!
I’m sending you love and light.
I’m so glad you are speaking out. I am a firm believer that it’s knowing a person that really lets us love them.
Angels on your body.
I’m so sorry to hear about your RA & Fibro. You always put on such a happy face that I had no idea that you were hurting so. Just know that the Lord has great plans for you and He is no way done with you yet. So as this door closes others will open for you. You have such a fun, engaging personality – you always brighten my day when you stop by the store. Take it easy and be good to yourself. I’ll be praying for you.
Well, get your butt over to me, where it’s not 108, I have a willing back-walker, and I’ll smack you if you talk in your sleep!
Uh oh. I sound like such a supportive friend, don’t I? Maybe if I get some sleep, I’ll be nicer?
Hope you’re giggling by now– love you always!
I know you love me, always! Besides, I’d smack you right back! 😉
This is absolutely my first time to write on a blog…I am to computers what..well, whatever’s opposite to computers!
Anyway, this must be a God-thing, because I don’t know how else I found you all.
I have RA and fibro, AND menopause. Fun fun fun. I was diagnosed w/ RA 25 yrs ago (two weeks after we got back from our honeymoon!), but it went into remission with my first pregnancy! I have three kids (20, 16, and 13) and it just came back with a vengence after a car accident 3 1/2 yrs ago. Two of my children were in the car, and even though I totalled both cars, no one was hurt. (!) I was also preparing to send my first off to college…terribly painful for me..but I don’t know why.
Anyway, I’ve been to, it seems like, every rheumy in the Dallas area…mainly because I don’t seem to like what they say…I’m very sensitive (an artist too) and it seems like rheumies aren’t sensitive. They hear their patients complain, and watch us all hobble in and out, and it also seems like no one ever gets radically better..so no wonder they seems insensitive to me. I did sort of like the last one I had, but with the economic times, I’ve had to switch to someone else because he wasn’t on my insurance plan. Of COURSE I don’t like the new one I’ve got now…so I have to wait 2 1/2 months to get in to see a woman. I’m looking forward to that, but it’s agonizing to wait. I’ve tried Enbrel (didn’t work), Humira (slammed me with pneumonia and thrush)so I got off) and now this new dr wants me to either try Rituxan or Orencia, but I can’t seem to get a clear answer WHY either of those (or anything else) should be a choice. I was taking Lyrica for fibro, and it helped some (Cymbalta made me more depressed!), but now I’m on Savella, but only for a week, so not enough time to notice a difference.
I’m sorry to write such a long BOOK in here, but, could you all help me, please? And, maybe I can help someone else. Here’s what I need: How do I get a really thick skin (so I’m less sensitive?), and also, are any of you all having all this and hot flashes every 15 seconds? And, I’ve read all the comments here, but I don’t think I saw a comment from anyone on Rituxan. I think the possibility exists that, on Rituxan, you can go into “remission” (bc treatments can get to be very far apart), but are (or aren’t?) the side effects worse or are they the same as with Orencia?
I had no idea you all were “out there”!!! Thought I was totally alone! Thank you all so much! Elizabeth
Glad you found us, Elizabeth! May you find an entire group of people to help you deal with this disease.
I suffer terribly with arthritis in my hands but as soon as I stopped eating red meat it made a huge difference. I still eat fish and I can’t resist bacon (who can!) but I’m sure it is because I’m no longer eating the fats in the meat that has helped me.
Dear Lynn,
I see nary a male name here, but I know what you’re experiencing. I too have RA, severe OA problems, including cervical and spinal disc degeneration and also fibromyalgia. Nobody mentioned major depression (after six months “conditional” depression becomes “major.”) There’s the tendonitis in my hands which is aggravating when I drop a glass or can’t get change out of my pocket when a line of impatient people are behind me. The next knee operation wil be plastic (in the last, the doctor kept saying, “Well, you have arthritis,” whenever recovery and rehab and the surgery itself was mentioned. That’s just karma since I used to be one of those “people.”
I was a very strong, big and active person, a jock and a musician (playing guitar is torturous now), so my whole self-image was based upon a strong mind/strong body concept. Now I’m not supposed to bend over, dead lift any weight, walk on uneven ground, even walk–a terrible outcome for an inveterate walker. Now I swim. I’d do alright in the light gravity of Mars, but not here.
Okay Lynn, here’s the positive: my mind still is sharp as a tack! I went back to school to prove to myself that I could read, memorize and still think. My GPA was exactly the same as when I earned my degrees: over 3.5 despite the years and all the meds I take. Yes, we give up what we love due to these syndromes, conditions and diseases, but we can try to find other outlets for creativity and for a way to contribute.
One note about the drugs mentioned: they’re all hard on the liver. Since I also have Hep B and C, my physicians have never prescribed them for me. However, the main and most effective kind are the opiates, i.e., Norco and Percoset. No, they certainly aren’t a panacea, nore will they do much for the fibro, and they don’t last 24 hours. I look at them as much needed breaks. I’m dependent, yes, but not addicted. After the first several months any kind of “high” is gone. Shortly thereafter the 20 minutes of euphoria disappears as well. Hell, sometimes I’m lucky they even take the pain away. As for the Welbutrin, occasional doses of prednisone, NSAIDs, valium, gabapetin (fibromyalgia) for the muscle/pinched nerves, they treat the other things besides arthritis better. Prednisone and my NSAID are for the resulting inflammation of course, but are less effective as analgesics than the opiates. Yes, it’s controversial and some people are set against anything with a potential for addiction, but I’ll tell you the truth: most of the time I would be in bed or on the couch feeling sorry for myself unless I had them (hydrocodone gets me up and trying to accomplish something). As far as the resulting bouts of constipation or the IBS associated with fibromyalgia, I just eat a lot of foods with fiber and go easy on the processed stuff. On occasionally is it an issue.
Any drug used will have their downsides. I’m not suggesting my regimen could help you, just reporting what works for me. Even as a male it was finally a female doctor who had compassion that provided me with enough of what works for me. My rheumatologist is one of the finest doctors I ever met but I now know I was undermedicated.
Do not be discouraged. It’s been ten years since I was 45 and my finger blew up with reactive arthritis (Reiter’s Syndrome). One more thing that helps keep my attitude in check. I have the genetic marker HLA-B27 for arthritis and both sides of my family for generations have suffered with it. Since the ancestors had it I could see no reason to resent God or anybody. After all, they all had it. My mother’s was so bad she couldn’t walk the last ten years of her life. My dad’s grandmother died from RA (no immunosuppresants at the time). Dad hasn’t done so well either.
Unfortunately, I still don’t accept my plight. However, hope endures and the dream continues. I have empathy for all of you since I lived a very healthy life until some switch was thrown and this all transpired. One very valuable thing for me, especially as a man, was the radical increase in my compassion for others. In fact, when I go to doc’s now I pray for everyone there. From what I see I don’t really have it that bad. I’m still ambulatory and in control of my mental processes. I’m also blessed with a spouse in it until the end with me. She must be a saint!
God bless you Lynn. My hope is that you do better than me and find those other strengths within you more speedily. Life is short and we have to make due with what we have.
Virgil