Blinged out party dress for a pity party for one

Actually no, it’s quite the opposite. I blinged out the dress instead of attending a pity party for one. So the title should have been “Blinged out Party Dress Acts as a Cancellation for Pity Party for One” But who the heck would’ve known what that meant, right?

I’ll explain more about the pity party details in a minute, I didn’t get the diagnosis I wanted at my Dr’s appointment but the good news is I’m working very hard on having patience & a healthy outlook on the situation. Before I get into that whole shenanigan though let me go ahead and share with you the project I did when I got home from the Dr’s. I wanted something sparkly to lift my spirits & while glue on crystals didn’t solve all my problems they certainly gave me something pretty to look at.

Pretty but plain Thanksgiving dress for Sam purchased at Target for $20:

Blinged out Little Pink Monster version:

The crystals change from peacock blue to emerald green & then a soft rose pink. Yeah, I know, pink is not the typical color to throw in that mix but her majesty would not have been happy if I hadn’t put in a bit of pink.

I used this Tulip Heat Setting Tool to apply the crystals & bought everything from JoAnn’s with a 40% off coupon on my iphone. LOVE that app. PS- I suggest using a little tool like some tweezers to hold the crystals in place while you set them with the heat tool so you don’t burn yourself. Learned that lesson pretty quick.

This was a fun little project, I’ll definitely iron on crystals to some other random clothing but maybe not ones that have as pronounced seams as this dress does, it was a big pain in the butt to balance the crystals while I waited for them to set.

Oh! I just have to show you Sophie Monster’s Thanksgiving dress right quick. It’s also from Target. It’s black velvet with the sweetest little tuxedo bib detail, Gwen Stefani’s Harajuku Mini of course, so cute, and $25! Mad Target love.

Ok, so here’s what’s going on with me personally…

For the last year you guys know I’ve been bouncing back & forth from healthy & picking up new activities like running to down & out sick as a dog. In the last year I’ve been to 3 primary care doctors, 3 infectious disease doctors, 1 endocrinologist, 1 urologist, 1 neurologist, 2 rheumatologists & even 1 psychiatrist. I’ve had MRI’s of my head, neck, abdomen & ankle. There have been x-rays, catscans & countless blood tests. I tell you all this not so you’ll feel bad for me but to give you an idea of what it’s really like to try and get a diagnosis when something is wrong with you that’s not as concrete as a strep test or broken bone. I sure didn’t know it would be like this.

Perhaps the biggest lesson I’ve learned throughout this experience is that medicine is grey, not black & white. Doctors have all the infallible qualities of humans, one of which being the capability of being wrong. They do not know everything & unfortunately many of them think they do. Some of the best advice I have ever read was “if you aren’t feeling well & a doctor tells you it’s just stress or just in your head then politely say, ‘thank you’, walk out of their office & find another doctor.”

The rheumatoligist I’m seeing now is AH-MAZING. I know this because at my last visit when she told me that my bloodwork still didn’t show any conclusive results I told her that my fear was that the lab tests were never going to show anything. My fear is that no one can tell me what is wrong with me & without a diagnosis there is no treatment, without treatment you probably won’t feel better. She looked at me and said “You deserve a diagnosis.” Having a doctor say that almost brought me to tears, it was a huge relief to say the least.

Here’s the short of what I do know…

My rheumatalogist believes that my Lyme test last year was a false positive. Yep, she thinks I never had Lyme.

They usually do two tests to confirm Lyme, the first is a standard blood screening & the second is called a Western Blot test. Both of mine have always been positive but that’s actually the red flag that perhaps it wasn’t Lyme. With true Lyme after you go through treatment your Western Blot results should change. Yes, in the initial screening you will always test positive for having the Lyme antibody however after treatment the second test should change to negative. Mine has never changed. My Dr. says she has treated countless patients with my exact situation, they thought they had Lyme but never got better. Turns out the antibodies your body makes for auto-immune diseases often show up as positive Lyme antibodies. If all that makes your headspin then here’s the nutshell, she thinks I have Rheumatoid Arthritis and/or Sjogren’s Syndrome. RA is a systemic disease that can affect all of your systems, this would explain why I have such random symptoms as continuous low grade fevers, fatigue, bi-lateral joint pain, morning stiffness, headaches & GI “issues”. Unfortunately 30% of RA patients tests negative for the RA factor, a test used to diagnose RA. My tests are negative.

The treatment for RA is not something you want to put your body through if you don’t have the disease so my understanding is that my doctor needs to build an overall case to make the conclusion that I have the disease in spite of the negative blood test. On Friday I had an MRI done on my left ankle to look for arthritic evidence. Remember when I fell & sprained my ankle last year? Well, I’ve done it twice since then & it just never seems to get better. We decided that would the best place to find some joint damage evidence. Since this upcoming week is Thanksgiving everyone is off & I won’t get the results until the following Monday. RA causes permanent joint damage so if all looks good & healthy on the MRI I’m not sure where that will leave me with getting a diagnosis but that’s where the attitude change comes in…

I know God is trying to teach me something great right now.

I don’t speak a lot about my faith on here which is a shame because it’s such a massive part of the way I lead my life. I think I’ve always been afraid of scaring off non-Christians so I kind of brush over the whole spiritual thing so as not to offend anyone. Also so many people try to smother others with their religious beliefs & I just can’t stand that so I’ve probably swung too far in the opposite direction of tip-toeing around & basically saying nothing. There’s also so many assumptions made about a person the minute they say they’re of one particular religion…but let’s not get into that now, just know things aren’t always what you assume.

Wow, that was a tangent. Where I was going with the God thing is that I know this is all for a reason. I just don’t know what that is yet. In the meantime I’m working on two things that apparently don’t come too easily for me, Faith & Patience. Faith that all things will happen when they are supposed to, faith to believe even though it doesn’t make sense in my little head & faith that it is all in my best interest if I can just hang in there. That’s where the patience comes in…

This is the part in the blog post where I’m babbling & it’s time to hit publish & go shove my mouth with the bagel bites which my nose is now telling me are starting to burn around the edges of those awkwarkdly square mini cubes o’ cheese. I’ll catch you on the flip side my peeps. Have a lovely Sunday.

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  1. Cute dresses.

    Have you ever thought about giving up wheat/gluten? I had similar issues back in 2004. I’m still stricken with illness from time to time, but not at a constant pitch. GMO foods also can flare sensitives. After dropping gluten and cane sugar, my joint inflammation is almost all gone, my GI issues are under control. Brain issues are gone, too. Those were the scariest. I’m sick right now after going out of town and eating out. Things will get better. God has plans and he can take away our illness if He wills it. My troubles keep me in line and knowledge of God’s constant presence.

  2. Tamara

    Hello, when I read in your earlier post that you were going to a rheumy my ears perked up.
    I’m 26 years old, and since Jan of 2012 I have been in pain off and on, sometimes my body hurt so bad I didn’t want to move off the couch. It started behind one knee, and then after a few weeks went to the other knee. My pain was bilateral, would come and go. I live in Alaska, and we went to Hawaii for 10 days. While there, for the first time in 6 months I didn’t feel any pain. Long story short, I was in and out of the doctor’s office more times than I coudl count. After I came home from Hawaii, my doctor began testing me for auto immune diseases. (through an ANA test, and more specifically she was looking for the RA factor ). It came back positive for ANA, negative for RA, and I was referred to a rheumy and from there went through a whole bunch of tests. I was diagnosed with Mixed Connective Tissue disease. I have to go in every 8 months about to make sure my liver/kidneys are functioning okay and so forth. When I got my autoimmune diseaes diagnosis, I was nothing short of devestated. I felt like my identity changed. I was in denial for a while..shock and numb. I spent many nights crying. My best advice is to try and stay positive, and not to read too much on the internet. Honestly, I try not to look up my disease on the internet because it could be scary reading about the “what ifs.” I try to keep a positive attitude, not dwell on the negativity of my disease, and pay attention to my body every single day. There isn’t a day that goes by that I don’t think about my disease, however it’s more in the context of I am so thankful for everyday. I am rambling..and not sure if I am making sense now ;)

    I will be sending lots of good thoughts your way!!

  3. hey natasha! i have been reading your blog for years and when you started posting about your symptoms months ago, i thought sounds like she has RA! my mom and i are super close and she was diagnosed with it 10 years ago… which took 3 years to diagnose… my sister and i have a lot of small symptoms too and its very genetic from women to women :( but my mom also tests negative for the RA factor. she was doing the shots for years and living on advil to get through the day which last year we found out was RUINING her stomach. she used to be super active and ran marathons so this has always been hard on her. they tried to tell her last year she has khrones (sp?) and she was like NO! i dont have anything else! so she stopped the shots, because they are linked to cnacer!! she has found that sugar and flour are a huge trigger… she also makes sure to walk an hour or so a day, or she will be too stiff. She takes advil if she absolutely needs it and if she gets a bad flair up then she will get a steroid shot. but other than that she is learning to control the symptoms. I know what you are going through, i still lived with her 13 years ago and she was a single mom so i my sis and i would carry her upstairs and have to bathe her! it was rough. also she went through early menopause a few months before and now her dr thinks its hormone related. anyway… it will get better, and you can totally live an active life with RA if that is what it is. It has taken her 10 years but we do 5ks all the time, we travel, we own a boutique together too and she just doesnt even really claim it anymore. good luck i will be thinking about you!

  4. Leigh Anne

    Great job in the dress! I would have never thought of that!
    Thanks so much for sharing your faith. I am not turned off by it, but rather encouraged! Thankful that you have your faith to get you through such a trying time. God is good! He will carry you through. My thoughts & prayers are with you :)

  5. Katharina

    Hey Natasha!
    I’m a long time lurker and just felt compelled to tell you that you are awesome. I always appreachiate what you write and I think you re a very special person. There will be a diagnosis for you and you will kick its butt. I’m sure of it.
    Thank you for being such a frank person and keeping it real. Your new posts always make my day.
    Lots of love from the Netherlands.

    • Natasha

      Ugh, Katharina, you have no idea how much your comment means to me. What a sweet, thoughtful person you are, thank you, you made my day!

  6. Deb

    I second looking at gluten intolerance. Gluten intolerance can lead to random issues mostly because it causes vitamin and mineral dificencies, which can result and thousands of random symptoms. Going gluten free has helped me and a close friend who was diagnosed with either ms or sojerens because of various symptoms and brain legions (neither was a perfect diagnosis) has been doing much better by being gluten free.

    • Natasha

      Hey Deb, thanks, I tried doing gluten free a few months ago but lately I’ve been wondering if it might worth another try…

  7. Im feeling your pain with your non-diagnosis hell. I’ve been suffering from similar symptoms to you for the last 3 years and still have not gotten a diagnosis of what’s wrong with me. I’ve turned to natural medicine now to try and get some answers and some relief.

  8. MC

    Thanks for sharing all of this with us! Of course the dresses are super cute, but what gets me most about this post is your ability to be SO honest with the Internet. I had a lot of health issues (GI issues to be exact) over the past year and after ALL of the tests and no results, my doctors decided it was a mixture of depression, stress, and anxiety. Now I’m on the path to find a balance in my life and medically treat my depression and anxiety. It is a tiring journey. I often want an instant fix and that is not how this is all going.

    I’m also working on my faith and patience. Much like you, I know this is happening for a reason and I know that God has a plan for my life, but that doesn’t stop me from doubting occasionally. I’m trying to have patience with myself and with my life, which is often easier said than done.

    Thanks for showing everyone that you too are human and are going through some stuff right now. I hope that you get your answers and get better! I know that it is completely miserable to not feel 100%.

  9. Meg

    Natasha I am so sorry to hear you’re stil going through this! My mom was recently diagnosed with RA, and getting to that diagnosis was such an issue. My dad is recovering from surgery and hasn’t been able to eat, for two months now. All the docs said it was in his head and he needed to get over himself and just eat. Finally, a doctor diagnosed him with an inflamed esophagus, which means he’s finally being treated for it and able to eat again. I hope you find out soon, you do deserve a diagnosis! But it’s so awesome that you’re keeping you faith up and continuing to be the amazing mom you are. You can get through anything :)

    Also totally gonna make my own rhinestone dresses…

  10. QUASHAUNTA

    Hey Natasha,

    LOVE your post. I really hope you find the results that you are looking for becuase you have been fighting this up hill battle for a while. LOVE, that you have alot of FAITH in God and letting Him take care of the problem. Just know that the Lord will not give more than you can handle! You are a STRONG woman who can handle just about anything! I know in my heart there will be a result very very soon. Hope you and your family have a wonderful Thanksgiving.

  11. Rafaela

    Adorable dresses Natasha…I’m a longtime reader of your blog but I’ve never posted a comment. I just wanted to say that I’m glad you’re finally starting to get some answers for what’s going on with your body. I know how frustrating “not knowing” can be.

    As far as talking about faith on your blog…from a non-religious (more spirtitual) reader, feel free to talk about religion as much as you want. I’ve always believed that people should be able to express their beliefs whenever they want and this is your personal space to talk about your life. And if your faith is a big part of that, you should state it. I’m keeping you in my thoughts and look forward to your next post.

  12. Jennifer

    Hey Natasha – So inspiring to see you put this all out there, especially the part about your faith. I agree with one of the ladies above – it does not put me off, but rather encourages me as well!
    I have been struggling with many of the same things as you for over 10 years now. I’ve been to 4 rheumatologists and the current one is amazing. He finally figured out that I have Sjogren’s and Lupus. I was told for the 6 years before that I had RA and was treated for it, but never got total relief. The current doc finally did x-rays of all my joints and I DIDN’T have joint damage after 6 years so he knew it was something else. I am now on a regimen of plaquenil and arava and only have to see the doc every 3 months because I am doing so well. Unfortunately the fatigue never really goes away, but I can deal with that as long as the painful part of the symptoms are under control.
    My prayers are with you and I truly hope you get answers and relief soon. If you ever have questions about medicines please feel free to email – I can at least give you the perspective of someone who has tried numerous ones. My short advice – don’t let them put you on long term steroid therapy, it does more harm that good in the long run and try to stay away from the methotrexate. It works well but the symptoms are awful, at least they were for me. The arava was a much better choice in my case.

    • Natasha

      Thank you so much for sharing Jennifer, that’s really useful stuff, I didn’t even know about steroid shots but now that I do I’ll be sure to really do my homework on them.

  13. Jennifer

    Hi Natasha,

    I always look forward to your posts–both your awesome craft ideas and for an update on your health. I echo what Katharina said above. You have “strangers” praying and pulling for you!!! I always hope the best for you and your family and keep us updated.

    jhubble aka long time kane show listener

  14. Hi, another mostly lurker here. I feel compelled to comment because we are going through the same thing… Except w my 20mth old daughter. We just ruled out Lyme & juv. RA. Now we’re looking at some fever episode disorders (but her fevers are higher 105+) & cyclic neutropenia. Might be worth a mention to your doc. We see a regular cycle of her being 100% fine then a day of her feeling tired followed by the outset of a fever then headache then usually vomiting & finally an unfolding trip to the ER where the doctors just shrug at us. I’m sorry you’re learning these lessons about drs & medicine. We are too & it’s been heartbreaking. It’s funny to think that in 2012 illness can still be so tricky. Good luck to you!

    • Natasha

      Bless your heart Lindsey, I can find a way in my head to imagine being strong in spite of something being wrong with me but I just can’t even comprehend dealing with all of the worry & wonder if it were my baby. I’m so so sorry, what’s you daughter’s name? We’ll keep her in our prayers, and you too, I’m sure you’re utterly physically & emotionally exhausted!

  15. Lorena Gamboa

    Hey Natasha,

    I’m a huge fan and have loved reading all your post. I was diagnosed with Sjogren’s Syndrome about a year ago. I was devasted when my doctor told me what it was. What help me the most was my faith and my family. I try not to read to much on the internet or I will go crazy thinking of what will be. I take it day by day, and have a great doctor. I hope that you will get the answers you need. I will keep you in my prayers and hope for the best. Your an amazing lady…

    All the best!

  16. Cat

    I know exactly what you’re going through. I was diagnosed with Juvenile Rheumatoid Arthritis at 16. The good news is that it’s ten years later and I feel amazing. It’s amazing what modern medicine can do. I’m on a shot called Humira, which is used for more than just RA. If you do have RA, you’ll be happy to know that drugs like Humira and Enbrel control the disease, stop the progression, and you only have to take them twice a month. You’re young and active, and nothing can stop you, not even some pesky RA. Remember that!

    Also, it sounds like you have a great Rheumatolgist, and that is SO important. I know it can be frustrating not knowing what the problem is, but having a doctor that wants to help you as much as you want to know the diagnosis is half the battle. Keep your head up!

    • Natasha

      Thanks for sharing Cat, how awful to be diagnosed with something like RA at 16, but I must say you sound like very strong woman now!

      I’ve heard Humira can work wonders, I have a friend who takes it for her Chron’s Disease…

      We’ll see!

      Thanks again for the well wishes, it’s very comforting to hear from other young women who are still living life to the fullest (:

  17. Kaitlyn

    Hi Natasha!

    I love, love, love your blog. I sincerely hope that when I become a mom, I possess even a fraction of the creativity and awesomeness you have :)
    I noticed a few of the commenters on this post brought up the idea of trying gluten-free… I spent all of last year battling fevers, GI issues, fatigue, full body aches, etc. I spent more time in various doctor’s offices, undergoing tests and blood work, than I did my own house. I thought being diagnosed with appendicitis and having said appendix removed would fix things but alas, no luck. After several suggestions from friends, I approached the idea of a gluten-free diet with my doctor. He figured it couldn’t make things any worse, so we went ahead with the plan. I’ve been GF for about three months now and it has really made a world of difference. My GI issues have almost completely resolved, my energy level has returned and I feel much more “me.” I still have body aches, but that’s because I’m back to exercising and ice-skating six days a week :) Granted, going GF has not been easy (I’ve never craved donuts so badly in my life…) but it has absolutely been worth it. Luckily, this lifestyle is becoming a fad now so tons of popular restaurants and grocery stores are carrying gluten-free menus/items. Regardless, I admire your positive outlook and wish you the best of luck. I’m sending happy thoughts your way! :-)

    • Natasha

      Thanks Kaitlyn, I tried it once before but it might be worth it again…

      So glad it helped you so much, and love that you ice skate so much! You’re Sam’s hero! (she wants to be a beautiful ice-skater sooo bad!)

  18. I’ve followed your blog for almost 2 years now and I’m not sure if I’ve ever commented… but I love the sparkly dress, and I love your honesty. I hope you get an answer soon and enjoy your Thanksgiving!

  19. Jill

    Sorry to hear you have been unwell! I’ve been reading your blog for quite some time and also listen to your hubby’s radio show!

    I would also agree with other commenters and take a look at a possible gluten intolerance or even celiac disease. Gluten isn’t just in our food, it’s also found in other products like lip balm and even play doh!

    I hope you are able to find the answers you are looking for and are blessed with more supportive drs!

  20. leonie

    Love the way you “blinged out “the dress!
    I think you will feel better once you have a diagnosis.I have “old Arthur” visiting me every day and night(arthritis,as my dear mom,used to call it).So,I decided that I would try to exercise more. Even if my bones aren’t strong,at least I can have strong muscles! I found out,that if I swim or do some activity-it really helps with the arthritic pain.and stiffness.
    Hope that you know what is going on soon! Your creativity helps so many of us and puts a smile on my face.

  21. Lyn

    Hi Love the way you blinged up the dress. I have been reading all your posts and lots of the comments and haven’t heard anyone mention Lupus. My daughter was diagnosed with Lupus when she was 16 (she is now 35) and she had most of the same symptons. She was on medication for quite a few years and now does not take anything but is seen by a Lupus specialist. She still gets migraines and some ackes and pains. She was told at the time to stop eating beef and pork and has continued to eliminate it from her diet. She sticks to seafood and chicken. Lupus is very similar to RA and hard to diagnose but really quite similar. Worth checking out.

    • Natasha

      Absolutley Lyn, my Mom mentioned Lupus to me and when I started researching it I couldn’t believe how similar it was to my symptoms. My Rheumo tested for it but I’m definitely going to mention it again at my next appt with her. So glad to hear that your daughter is doing better, that’s interesting about the beef & pork, I certainly eat a lot of it /:

  22. Iman

    Lots of love and prayers for you and the fam<3

    I don't have much advice otherwise I'd offer some like all the lovely helpful peeps above me. But i don't so all you have is my support and love! :] (take that, invisible sickness.)

  23. Hey Natasha! It has been too long since I have been “regularly” reading/commenting or even online. (sorry) I love the color of Sam’s dress!!!
    Sorry to hear about your continuing health issues. That just plain sucks. I have to agree with you though, that maybe there is something positive you will get out of it. And I love that you are such an open person that can acknowledge it, instead of being negative and only seeing the bad. Our family is keeping you and yours in our prayers. I really hope that you get some answers. If it is RA, I am really sorry too. My dad has that and it is not fun, but at least there are treatments for it now, better than the almost 10 years ago when he was diagnosed. And I am happy that you found a doc you like!

  24. Isabel Thomas

    Hi Natasha! I can’t imagine how frustrating it’s been not knowing your true diagnosis. Like many of the comments above, my mother was also diagnosed with RA 17 years ago. At the time, they also thought she had Lyme. After about a year of meds and controlling her RA, my mother decided to get off the meds. She changed her diet, lifestyle and relied heavily on her faith. She never went back on the meds.

    • Natasha

      Really? That’s awesome, it’s amazing to me how many other people seem to have Lyme & RA intertwined… Thank you for sharing!

  25. Hi Natasha!

    I am so sorry to hear about your symptoms. I really like that quote you said. Doctors are people too, and they have been through a lot of difficult times to become doctors, which probably affects their thinking about people. Good ones are hard to find.

    Your wonderful commentors already mentioned gluten and sugar. Good for them! I just want you to know that going anything-free is a personal journey that has its ups and downs. I’ve been through that journey and am still on it. I wanted to tell you a quote from my chiropractor, which always makes me feel better. “Like the geese flying south for winter, we each have our own journey, but it’s nice to know we are not alone.” You are not alone, especially with the community you have worked so hard and so happily to create in your life.

    PS you have inspired me to start crafting for real! I dropped my hours to part-time so I could spend more time to myself, and I have begun to crochet! I will have to send you pics :-)

    • Natasha

      Hi Jaye Anne, thank you so much for your uplifting comment and good for you! I’d like to see pics of what you whip up!

  26. Angela

    I hope you get your diagnosis before Christmas. That would be such a gift.

    I love how you share yourself because not only can you possibly help someone else, someone else’s comment could also help you! You are wonderful. Happy Thanksgiving.

  27. BBB

    hahaha I was on my computer and my husband asked what I was up to. I told him I was reading Natasha’s blog. “Oh, will you be looking at pictures of naked men then?” I’m totally bewildered at this point. What is he talking about???? Naked men? Natasha blogs about her adorable children, fun crafts, yummy food, personal life, all kinds of great things…but naked men??? Then I remembered, the first post he saw me look at on your site had a picture of a half-naked William Levy (I think, it was a while ago and I don’t even remember the reason behind it!). Looks like you set the tone of your blog for him in a very different way than for most of us.

    • Natasha

      Hehehehe, that’s hysterical!! Who was it a picture of…hmmm, oh you know who it was? The guy from Grey’s Anatomy, Dr McSteamy, it came out that he and his wife had made a sex tape, that’s hystical that’ what he remembers! Thanks for reading for so long, means so much (:

  28. Sara

    I was diagnosed with Sjogren’s Syndrome, fibromyalgia, and undifferentiated connective tissue disease a little over a year ago. It took years to get a correct diagnosis. I’d been told over the years I had a metabolic issue, that I might need to get shoulder surgery, and at one point they even made me get a sleep disorder test. But I eventually met a fantastic doctor who connected me with a rheumatologist. I also went to the NIH Sjogren’s Clinic after I got back my positive ANA and SSA test to confirm the Sjogren’s Syndrome.

    The pain and fatigue can be overwhelming. I had days where I couldn’t get out of bed, or brush my teeth, or climb stairs without my husband’s help. But it really does seem to get better with time and a good treatment plan! Hang in there.

    • Natasha

      That’s fascinating Sara! Sorry, first off that majorly sucks, trust me, just one of those auto-immune suckers is enough to wreak havoc on your life much less three. Can I ask though how did you get a doctor to diagnose you with all three? I’ve been wondering if I might also have Fibromyalgia as well because of some of my other unexplained symptoms…did your Rheumatologist diagnose you with all three at once or did that happen after the visit to the clinic. I have a positive ANA & elevated C-reactive protein so far in bloodwork but nothing more specific than that…

      • Sara

        The Sjogren’s diagnosis came first after I had a positive ANA and tested positive for the SSA antibody. My C reactive was elevated but not so much to indicate RA.

        The undifferentiated connective tissue diagnosis came second, a few months after the Sjogren’s diagnosis when I was having joint pain and swelling that really couldn’t be explained, and the fibromyalgia came last shortly thereafter when it was clear that the bulk of my daily pain was coming from my muscles and not the joints. I was having muscle pain in a lot of the right “points” so they started treatment for fibromyalgia with medication.
        I technically have IBS too, but that diagnosis came years before they ever considered Sjogren’s. So I think any GI issues I had is actually related. I didn’t go to the NIH clinic until months after my diagnosis. They ran tests all day and performed a lip biopsy, and confirmed the Sjogren’s.

        The bulk of the first year was a lot of trial and error with my medications. I think we finally found a good combination but there still are some bad days, especially when I get overly stressed out. Low impact exercise and yoga really helped. I also am super careful about foods that trigger the GI symptoms which has helped a lot too. And you have to give yourself time to rest up when you need it.

        • Natasha

          Wow, what a journey you’ve been on!

          Thanks for sharing, it’s comforting to hear someone else say that they were able to figure some of this out over and time…

          • Sara

            It was a huge wake up call. My body was forcing me to slow down and seriously reprioritize my life. I learned to say no to people, cut back on work, and purge my life of stupid stresses. I also had to make a series of adjustments over a long period of time to cope, like my daily routines, my diet, and even doing little things like getting an ergonomic keyboard for my computer. I had some really terrible days, too, when I really broke down and just felt sorry for myself. But that’s okay too. You’re allowed to have a self pity party once in a while.

            Autoimmune diseases are life long, so it’s all about lifestyle adjustments and finding the right medication with some trial and error. I really wish you luck on your journey, but know that you’re not alone! Feel free to contact me with any questions.

  29. Sascha

    Oh what can I say? I want you to have answers. In September, after 10 years, we finally got a real DNA diagnosis for Rocco (not along your line of symptoms) of a hard-to-swallow diagnosis. It’s a mothers worst nightmare but I will let my inner spiritual light guide me. Our family is Athiest… Well actually Agnostic since we believe there is more out there than any human can comprehend. It’s just that, well, we CANNOT begin to comprehend. I read 95% blogs that the writers are religious and I love it. I am one of the readers you would think to offend when writing about your faith in God. Don’t. I will still read you if you decide to include more posts about your faith. It’s uplifting and beautiful.

    P.s. An Athiests prayers to your wellness. There are stronge forces when a collective collides.

    P.p.s I’m not a granola eating, Berkinstock wearing hippie. I swear!

    • Natasha

      Seriously, thank you SO SO much for sharing! It’s wonderful to hear that you aren’t immediately turned off by my “God” talk and that you respect it. Thank you for that!

      And your poor baby, Rocco will be in my prayers. I can’t even fathom if this was one of my girls, that would require such strength…I can’t even imagine.

      And I know you’re not granola, the stuff you make is just too darn cute for that (:

  30. Sydney

    Hi Natasha,

    I hope you read this. I have had a lot of weird stuff going on with me since 2000 and went to about the same amount of doctors that you did. I was diagnosed with MS (and they are sure I have that but it really doesn’t rear it’s ugly head too much yet thank goodness!) but the things I was experiencing weren’t the MS and my neurologist knew it. I’d been ruled out of having “anything rheumatologically wrong with me” by a rheumatologist at the beginning of my journey because I didn’t test positive in a rheumatological way. In 2009 I finally saw my blunt, frank, in other doctor’s face at times WONDERFUL rheumatologist that has me nailed down to sero-negative inflammatory arthritis. Hang in there and I totally agree…..if they say you are under stress or as my old primary care physician said to my horribly swollen and painful knee, “It’s probably just normal wear and tear, we may never know what’s wrong with you” hit the door running and never look back. Good luck and take care hon, it’s so tough to be a young mom and deal with all of this, I know. (((HUGS)))

    • Natasha

      Hi Sydney!

      Thanks so much for your comment, I did read it and it’s really encouraging! What a journey you’ve been through! I hope you’re finding relief now that it sounds like they figured out what’s going on with you. And your old doc sounds like a total jerk! I’ve been to one or two of those myself, what the heck is wrong with them??

  31. Sydney

    By the way, real quick, I wanted to tell you that my rheumatologist says it can literally take her YEARS to make a firm diagnosis on someone because the symptoms pop up so gradually for many arthritic diseases. My diagnosis is still a general diagnosis since there are hundreds of sero-negative inflammatory arthritis’s but she can’t nail it down yet. I am receiving treatment that helps immensely and she’s on top of it whenever something pops up so I feel confident that we are doing the best that can be done. My dad wanted to send me to Mayo clinic at one point and my rheumatologist said she’s had several patients do that and they came back with the same general diagnosis she’d given them because the proof wasn’t there to nail it down any more than she’d been able to do.

    • Natasha

      Ugh, I hate that this stuff is so vague! Thank you for sharing though, it’s so encouraging to hear from someone else who’s been there.

      My dad had wanted me to look into Mayo clinic but like you said, I’m not so sure there’s much else for them to find out because there just isn’t that much evidence.

  32. Eva

    Hi, I’m sorry to hear about your health. I am a doctor of pharmacy student and after reading your story i wanted to share some info that i’m not sure you were aware of, hope it helps:

    There are 3 stages of Lyme Disease. 1) early localized 2) early disseminated which take months to see and 3) late Lyme. Common symptoms associated early disseminated are migrating pains in joint or tendons, headaches, fevers btw 100-102, vision changes, severe fatigue, sore throat , abnormal pulse, stiff/aching neck, tingling or numbness of the extremities. Late stage the neurological symptoms get worse causing confusion, short term memory loss and inability to concentrate. You stated that you were treated but then tested positive on a western blot. Western blots are confirmatory tests used because they are highly reliable meaning most likely you the antibiotics failed to treat your Lyme disease initially and therefore maybe you might be showing signs an symptoms of later stages.

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