Rheumatoid Arthritis Treatment Debate | Rheumatoid Arthritis Warrior

Rheumatoid Arthritis Treatment Debate

Diet as Rheumatoid Arthritis Treatment DebateTo treat or not to treat RA: that is the question

We’ve talked a bit about Diet and RA recently on RA Warrior. There is even a new section of the blog dedicated to RA / food related topics called RA Kitchen after Food Network’s Hell’s Kitchen. Dietary adjustments can be important to those living with a chronic illness like RA. They are an important adjunct to medical treatment.

Recently, an advocate of changing diet in place of medical treatment for Rheumatoid Arthritis left a lengthy comment, advancing her views. I wanted to respond to several points, but it was too long for me to reply as a comment. Here are excerpts from her comment with my responses.

  1.  “It didn’t seem it could get much worse”: It definitely can get much worse: From joint replacements surgeries to RA damaged vital organs to osteoporosis to heart disease to death. Rheumatoid Arthritis a dangerous disease; have you ever lost a loved one to RA?
  2. “I have been med free for over a year except for 15 days of prednisone which I just completed.” It sounds like you think some of us are not cautious enough about using medicine. But, I think I’m actually quite cautious. At times when I was bedridden due to RA, my prednisone remained in the medicine cabinet. I did not feel the risk was worth it in my situation since prednisone only treats the symptoms of RA. I have chosen to take medicines which fight the disease.
  3. “Stress, weather, and other factors still affect me but…” I realize that pain levels and perceptions are very personal, and RA symptoms can vary a great deal. But the important thing with Rheumatoid Arthritis is to consider the actual disease first. This is not just about painful symptoms. Barometric pressure may influence the symptoms you feel, but it does not cause the actual RA i.e.: bone erosions, joint destruction, and heart disease. Stress may make pain feel worse, but it is not the cause of Rheumatoid Arthritis. I just don’t want anyone reading this to wonder whether RA is their own fault.
  4.  “…how well my joints looked …” Looks can be deceptive. Joints can look normal on the outside, even with raging RA. Of course, the deformities usually manifest eventually. Rheumatoid Arthritis ought to be treated regardless of outward appearance. I am painfully aware that there are doctors who do not know this. I genuinely hope that your Rheumatoid Arthritis is not aggressive. I hope that inside of your joints, RA is not continuing to attack. But the periodic pain that you describe is not a good sign.
  5. “Old anger and resentment is too hard for our bodies to carry around” I was confused about this statement. Does it imply that RA has something to do with psychological problems? Emotional problems can have physical manifestations, but this has nothing to do with what causes the damage and disability of RA. I appreciate that you are “working through old issues,” as you say; stress can influence pain perceptions as previously discussed. However, this will not stop RA joint damage.

In the Rheumatoid Arthritis treatment hot seat

Writing today’s blog was uncomfortable for me. I want to fight RA and be a warrior against things that I believe stand in the way of understanding and curing RA. I do not want to fight other people living with RA. My quarrel is with ideas, not people. I do not go to other blogs and say what I’ve said here. I think of this as my front porch; and I speak from my heart.

A majority of RA’ers have periods of intermissions and flares. RA can be confusing and make one wonder what caused it to get better or worse. It is natural to look for ways to make symptoms improve. However, it’s important to remember that Rheumatoid Arthritis often continues to cause damage to joints and other body systems, even when the symptoms improve.

PostBlog: I do not oppose alternative medicine per se. I remember my own grandfather using acupuncture to help him with RA symptoms in his later years because he could not take any more cortisone, having exceeded the recommended lifetime allowance… However, he did die prematurely with the typical heart disease of RA. I feel certain that if the disease fighting medicines we use today had been available, he would have taken them in order to increase the possibility of living out his life and seeing his grandchildren grow up.

Recommended reading:

RA 101

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

35 thoughts on “Rheumatoid Arthritis Treatment Debate

  • January 14, 2010 at 8:53 am
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    I just wanted to let you know I think you’re “spot on” with this post! Of course I would love my health problems to simply go in remission due to diet change… and it hasn’t been for lack of trying on my part. I’ve been meat/dairy/sugar/soy free, taken oils and vitamins and probiotics, juiced veggies & fruits, tried raw diets, taking out nightshade foods… and in 4 years I have never been “flare-free”. What works for some doesn’t always work for others.

    Reply
    • January 15, 2010 at 12:14 pm
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      Sandy,
      Like you, I have never been without a moment of flare in almost 4 years. Usually, there are more than a dozen joints in extreme pain & every single joint tender. I always say the best test of any med or treatment of any kind would be that it brings remission to those like us who never have had it.
      For many others, RA waxes & wanes. So that would not provide as clear evidence of effect.

      Reply
  • January 14, 2010 at 9:57 am
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    Ihave other autoimmune disease,(MS and UC & others).For 30 years,people have had advice. Bottom line? We don’t know and we can only do what we believe best for us. I’ve seen homeopathic specialists,Chinese drs with herbs, diets and”alternative” practices. None improved my health or symptoms (although I continue acupuncture because I feel better). Prednisone & immune suppressant drugs didn’t cured colitis – took an ileostomy. But drug therapy for MS for 12 years stopped the progression and improved my health.
    No one understands the autoimmune disease process and therapies are often hit or miss. Like the rest of life, take risks & see what works for you.

    I can understand the comments “pushed” buttons & might have been hurtful. When you expose yourself here, that can happen. But you know what you believe. Keep doing it.

    Reply
    • January 15, 2010 at 12:19 pm
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      Rosalind,
      Thank you for your visit. We have lots of members & friends of the site who do not have RA. How else to build bridges?

      No fear, I’ll “keep doing it” as you say. I do not take differences of opinion personally. I know that is the risk of stating any clear viewpoint. Blogging is a conversation.

      Reply
  • January 14, 2010 at 11:27 am
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    NIce post – I personally believe in a combo of meds and natural remedies. I take Prednisone, Methotrexate, and Remicade plus a natural of naturopathic supplements/alternative treatments. I think it depends on each person. Some people DO find relief with all natural regimen/alternative therapies…I personally could not forego meds completely, though, with how advanced my autoimmune problems are. I say, to each, his own! Every person’s body is different so, what works, works! Good blog, as usual 🙂

    Reply
  • January 14, 2010 at 11:45 am
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    As I sit here in Texas finishing the last of my classroom requirements for my Ph.D. in Clinical Psychology I hesitated to respond to this post. I do not want to seem cold hearted or rude. I do not usually bring up on blogs and such my education because I do not want to draw attention to my degree, have people coming to be for advice and help that I may not be qualified to give and for ethical reasons. BUT this post screamed out to me as incredibly important to reply to as a professional.

    For those who are controlling their RA or any type of arthritis with only diet, please make sure that you are educated on all the facts. The damage that occurs whether you feel it or not. Look at what the arthritis association says about the diet, ask your doctor, get a second opinion. If you think you truly can control your RA with diet than you probably are either looking at denial as to what is going on and ignorance towards the real damage going on, you are misinformed and need a second opinion from another doctor OR you have been misdiagnosed. I realize that we have to be comfortable with our treatment in order to follow through with it but we also need to look at the facts. If that means that we are uncomfortable with what is doing best for our health it is time to see a professional counselor. Just using diet to control RA is not possible, you are self sabotaging your health which is dangerous. Not treating your RA appropriately is like slowly purposefully killing yourself. I pray that those who are not at peace with their RA treatment seek out someone to speak to, work through the anxieties and fears (we all have anxieties and fears with this disease) and do what is best for your health. Keep up with the diet, get a second opinion, ask questions but ultimately remember that without your health you will die. RA is a deadly disease, remember that when you choose your treatment.

    Reply
    • January 14, 2010 at 7:49 pm
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      I just want to say thank you for your reply. Kelly always does a great job with her blog, but your reply made me cry. I read so many times at other blogs about people stopping medication for some quick fix. Why anyone would end medical treatment for these “bogus” cures is sad. Watching my grandmother slowing loose the use of her body due to RA made me wonder would I have to go through all that she did? Thank goodness for the advances in medicine that can help halt the loss of mobility in my hands and feet. While the pain is still a battle to get the right combo of meds, the thought that at least the DMARD are helping fight the internal fight for me brings me a lot of relief. Thanks you again for the reply and Kelly we cannot thank you enough for your blog. Through all the pain you go through daily you are quite an amazing person! Take care!

      Reply
  • January 14, 2010 at 2:22 pm
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    I have a family member with UC and swears he controls it with this diet. Whatever. Thanks for posting this as it is very helpful to me when people say those things to me. I appreciate your blog, the work you put into it and your heart shows through your writing. Thank you.

    Reply
  • January 14, 2010 at 4:02 pm
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    I am in agreement with this post…it seems to me everything within reason should be tried. I am “new” to RA, and at times I am just floored at how my life has turned upside down, and I am not responding to the initial treatments. I have tried to make changes without upsetting my apple cart any more than it already is. This should not mean in place of medications…I only know my difficulties with pain and fatigue and can only say that almost every person I have talked to has a pet remedy for RA (one person seriously told me to spray WD40 on my joints). Maybe I have not dealt with this long enough to be an extremist; however, I know that the times I have been so stiff, painful, and tired but unable to sleep I would have tried just about anything if I could at least sleep…I agree that there are a lot of superfluous medications out there, but this is a chronic problem for a majority of people and needs to be managed accordingly.

    Reply
    • January 14, 2010 at 7:39 pm
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      The WD40 statement had me busting out laughing and I really needed a laugh today. You are right, it does turn your life upside down in so many ways. Good luck.

      Reply
    • January 15, 2010 at 12:28 pm
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      Robin, I have heard of the WD-40 comment before, but you are the 1st person I’ve met who actually received it! 😎

      Yes, chronic RA needs to be treated. There are less than 10% whose RA symptoms just surrender & go away forever with no damage, usually before 6 months. Someday, science will identify that specific condition. The rest of us need to fight back.

      Reply
  • January 14, 2010 at 9:38 pm
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    I completely agree with the need to make EDUCATED decisions. Just because you don’t hurt, doesn’t mean it isn’t there. This isn’t a simple matter of “out of sight, out of mind”. This is what makes it hard when people don’t SEE your pain or deformities. One of the challenges I have is that no one else in my family going back 4 generations that I have found has had this disease. So they don’t understand it isn’t just a simple “cure”. I love my Dad but he found a lady he works with that had “that arthritis thing” and she magically was better with Noni juice. He promptly when and ordered me 4 bottles (3 of which are still in my pantry) and he was horribly disappointed when it didn’t work. Ah, I would love to be able to just eat something and find the magic cure, but alas, it is not to be. I’m lucky to find a med that works. I’ve also developed food sensitivities that I didn’t have before. I can’t use the pink or blue sweetners or have caffene because they cause my RA to flare.

    I’ve decided that for me, just saying “thank you for the suggestion, I’ll look into it” and leave it there. You have make educated decisions for everything regarding this disease. Everyone is different.

    Reply
  • January 14, 2010 at 9:46 pm
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    Kelly, thank you for your courage and encouragement. It isn’t easy to take strong medications with side effects and when people question you, it is that much harder. It isn’t like we take medications such as methotrexate for a high or something, rather instead in the hope of preventing more damage. As someone new in the RA community you help my confidence when it is weak. Have you ever heard the lyrics to “Your Hands” sung by JJ Heller? I think it is a good RA theme song. I am sure that is not what she wrote it for but it comforts me.

    Reply
    • January 15, 2010 at 10:37 am
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      I just have to say that I love that song! It really does lift me up when this disease has me feeling low. 🙂

      Reply
    • January 15, 2010 at 12:33 pm
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      Kay,
      That’s a good point which I’ve never even noticed. It’s really not very compassionate of friends and family to insist that the medicines we need to live are inappropriate, is it? It’s hard enough…

      Reply
  • January 14, 2010 at 9:51 pm
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    Thank you for your post. I am a perfect example of making the mistake of stopping my meds for RA. I was feeling great and with my Dr’s permission stopped taking my meds over the summer 2 yrs. ago. When winter came and the pain began again I got back on my meds – by Feb. I was very sick and found out that the autoimmune disease had attacked my adrenal glands while I was off my meds. Now I have Addison’s Disease and have to take steroids for the rest of my life in order to stay alive. My advice would be the same – take the meds you needs and suppliment with some of the natural stuff, I take lots of vit. and have been doing well with not getting very many colds and things of that nature. Thank you so much for all the research you do!!

    Reply
    • January 15, 2010 at 12:41 pm
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      Tina,
      Thank you for sharing your story. I hope it will help someone else. I’m glad you are doing well right now. Did you have to get a new dr.?

      Reply
      • January 15, 2010 at 7:04 pm
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        Have lot’s of Dr’s. I did get a new one – an endocrinologist for the Addison’s, have an internest as my gp, a neuro, and my rheumatologist. I am going to UT Southwestern to get a second opinion in Feb. – to a rheumatologist. Thanks for all you do to keep us informed.

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  • January 15, 2010 at 1:20 pm
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    excellent responses. I once had a Chiropractor tell me that my pain was from taking mtx…that I needed to go off my meds and he could cure me through adjustments. I looked him in the face and told him he couldn’t be more wrong and that he should not be spreading that type of BS. Quite the ego on that guy! About 6 months later, while I was a cashier at Home Depot, I saw him in my line to checkout. When he looked up and saw me, he quickly changed to a different checkstand. I must have had an influence on him!!!

    Reply
  • January 15, 2010 at 1:21 pm
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    Kelly,I agree with you; and I truly appreciate how you state your views with respect and grace but with well-researched knowledge behind them.

    Reply
  • January 15, 2010 at 1:22 pm
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    well said, Kelly!!

    Reply
  • January 15, 2010 at 1:23 pm
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    I agree. Alternative therapy has its place, but I think I will go get a cast if I break my arm.

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  • January 15, 2010 at 1:26 pm
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    nicely put. i like that you included #4. i don’t look like i have severe JRA but looks are deceiving. i once had a personal trainer that thought i didn’t need meds, just aggressive exercise. he went as far as calling my PT at the Dr’s. office to state his case and demand i be removed from the med program! i was furious and blessed him out up and down the south, then fired him. thanks for views, thoughts, and input. keep it up Kelly!

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  • January 15, 2010 at 1:27 pm
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    I have to agree completely with you Kelly, you addressed each issue with truth and tact. I think that some people when dx with RA are unable to handle the TRUTHS of this disgusting and ugly disease that transforms our lives in the blink of an eye, so they will do anything that comes along to avoid facing the fact that RA is not going to go away. If… See More I didn’t have the hand of the Lord to hold I’d probably be one of those in denial about what we have-RA. It’s nasty but it sure as heck ain’t going away anytime soon so we all must do what we must and that is to FIGHT BACK! I will not stop fighting ever….GOD BLESS

    Reply
  • January 15, 2010 at 1:29 pm
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    I agree completely with you as well Kelly. Keep up the good work that you do. You are very imformative. The work that you do to keep us all informed must take you hours. I find you are a very helpful person who goes out of the way to help others. People should always take medications as prescribed! If you want to add other herbs, check with your doctor to make sure they wont interact with the prescribed meds. I take Flaxseed oil and fish oil which also helps me.

    Reply
  • January 15, 2010 at 1:30 pm
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    I suppose it depends on the individual and what works for them. I prefer to go as natural as possible right now. I watched my father suffer with COPD and the effects of prednisone alone were horrible. I would much rather die of heart disease than liver disease or shut down kidneys after your body bloats from all those drugs with the even worse side effects. There is something to be said for quality of life. My issues are not so bad that I cannot function, but I will not put even more poison into my body to cure a disease that would ultimately take longer to kill me than the meds would…. Sorry, that’s just the way I feel.

    Reply
  • January 15, 2010 at 4:51 pm
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    I would rather just die in my sleep, it would be good if we had a choice.

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    • January 15, 2010 at 7:48 pm
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      Inez, your comment is concerning to me could you clarify? Do you mean you rather die than deal with the disease? or you rather have a choice in general about death. Sorry, it is not always clear in online environments. Stay well.

      Reply
    • January 16, 2010 at 1:54 pm
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      No I don’t want to die, it would be good if we could have a choice of how we die not when we die

      Reply
      • January 16, 2010 at 8:01 pm
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        Inez, that makes more sense 🙂 I agree, I rather not die from this disease, I rather die of natural causes decades and decades and decades from now. Maybe with the advances in treatment we will one day have that choice! That would be very exciting. Take care, stay well!!

        Reply
  • January 15, 2010 at 5:55 pm
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    I’ve got an aunt who has pretty serious RA, so I have a fairly good understanding of how it can affect someone’s life. Thanks for having the courage to share your experience with us!

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  • January 16, 2010 at 11:03 pm
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    Kelly,

    I just wanted to take a moment to echo what many have all ready said. Thank you! Thank you for taking on this topic even if it was hard for you to voice. You did it with respect and tact! This is a subject so close to my heart because I deal with my own RA and also deal with the care of JRA for my daughter. For myself I dealt with YEARS of denial and did not care for myself. I still waiver at times and just plain out get tired of having to treat my RA however.. I have also paid for it. I am in my early 30’s and my hands look like I’m 90! I didn’t “feel” all that bad, but when I started feeling bad the progression was all ready much worse than had I made the choice to treat myself when I was diagnosed.

    I feel like I could go on and on, but the biggest point I can make is what has all ready been said – TAKE the time to study all your options, the pro’s/con’s and talk to your doctor before going 100% on your own, the damage can be done without you knowing and there is some hard and real truth in the fact that your heart IS affected by your RA!

    Thank you Kelly and all those who are brave enough to comment and be real here!

    Reply
  • September 7, 2010 at 10:52 am
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    have you written about antibiotic treatment for ra?what are the timeframes and doses for minocycline?

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  • August 4, 2013 at 9:29 am
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    when I got my diagnosis, my mother in law contacted me with a friend of hers. she’s been diagnosed with RA 7 years ago, and since she wanted to have a baby, she refused treatment. she says she never took any pills and she’s flare-free since, and she says living a healthy lifestyle and dancing makes her feel good about her body and then she doesn’t need medication.

    I don’t have anything against choosing that; I mean, we’re all grown ups, if you’re informed about what can happen, and you choose not to take medication, it’s on you. I can’t say she will have a flare in the future, perhaps she is into remission and it never comes back, I mean… autoimmune diseases are so complex, there are so many degrees of severity, that I don’t doubt there are cases when the remission lasts a lot. perhaps some people just experience one or two flares in their lifetime. but I think that’s just luck, perhaps your genetic tendence to RA is not that strong, or your immune system is “easier” to control, or whatever. that’s not general. stating that you just need to change your diet or dance to relieve stress or whatever is kind of insulting. I know managing stress can help (the new biology field of neuroimmunomodulation studies that, the amazing interaction between the mood state, hormones and immune system, it does a lot of focus in autoimmune disease), and I’m absolutely sure a healthy diet helps. but IT WON’T CURE YOU, and the fact that you’re telling me you’re cured and I’m not, suggests this is my fault and I’m not living healthily or taking care of me. it would take a lot of nerve to tell somebody suffering from advanced RA “you can get cured eating antioxidants and dancing.”

    I wonder how will this people feel if they suffer from a flare in the future and they discover their own body was still attacking them, and they didn’t know it. will they talk about god and faith then? will they refuse medication then?

    it’s easy not to walk in somebody’s shoes… and it’s even easier for non RA sufferers. they’re not the ones ending up in a wheelchair if I don’t take my medication. it’s easy to judge (and funny, like they say in the simpsons xD). but in the end, your life depends on you, and they won’t be there helping you when you need help.

    well that was depressing xD

    Reply
  • May 15, 2016 at 12:30 pm
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    I identify with this post and many of the comments. I have had RA for 30 yrs. I am currently on a biological. I get very frustrated with the absolute exhaustion I still feel. I know it is important that I be grateful that pain is usually under control, but extreme fatigue is debilitating too. It affects my social life (or lack thereof) in a big way. My Rheumatologist has no answer for fatigue. I’ve been seeing a Naturopath to try to address the fatigue issue. She wants me off the biological, but I’m not willing to risk that. It’s difficult to maneuver through.

    Reply

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