I’ve tried to sit down & right this post three times this week.
The first time was when I was wide awake at 4a, something that’s been happening a lot lately, but after writing a few blabbery paragraphs I reminded myself of pretty good rule.
There are two things you should never do in the middle of the night:
#1 Never attempt to have an important conversation with your spouse, nothing good comes out of arguing in the middle of the night.
#2 Online Shopping, it’s a lot easier to talk yourself into purchasing that purple le creuset lasagna pan that you have absolutely no business buying when you’re half delirious.
And now, after rereading my thoughts from the other night I’m adding blogging to the list. Cause once you hit that ‘publish’ button there’s no going back.
The second time I tried to write this post was earlier today. Here’s the thing, this flareup I’ve mentioned to you guys isn’t going away, in fact it’s wreaking havoc on my life. Today the girls had no school so I asked Kim to come help out. The plan was I’d go get my labwork done in the morning, stop at the grocery store & then Kim & I would take the girls on an afternoon trip to our local farm with all of our little friends. I knew that between the fatigue & joint pain I couldn’t do it alone but I desperately wanted to be there with my girls & attempt to give them some of the normalcy we used to have. I don’t know if it was the 9 vials of blood they drew or fighting the Whole Foods lunch hour but by the time I got home I knew there was absolutely positively no way I could go anywhere besides my bed. I cried the entire way home from the grocery store.
I don’t know if I can pinpoint exactly what upset me more, the guilt of having a nanny take my kids instead of me, the fear of having my friends judge me that they’re all there with their children & then Natasha’s kids show up with a nanny, or the frustration that I’ve completely lost control of what I can and cannot do. It’s one thing to neglect laundry, or things I love like blogging or horseback riding because I don’t feel well but it’s quite another to not be able to do something for my children that I told them I would. I feel like the option to make things happen that are important has been taken away from me & it’s a devastating realization to come to. After Kim had left to take the kids to the farm I was still pretty down, although I absolutely hid the tears from the girls, in fact I promised them we’d make slime & watch a movie together when they got home, but I thought that now that the house was quiet I could lay in my bed & write this post as a form of therapy. Instead I fell alseep…for three hours.
This is all probably a good thing because the last two times I’ve begun to write, it was a little too heavy on the emotional side. Now it’s the end of the day, the house is dim & I have two sleeping kids passed out on the couch next to me because in times like this it’s totally ok to have chicken nuggets for dinner & pass out watching TV on the couch. Flexibility my friend, it can be a lifesaver.
So here it is. If you’ve been around here for the last couple of years then you know I’ve struggled with my health from time to time. First they thought it was Lyme, then it was gastro issues like IBS followed by having surgery to have an inflamed gall bladder & appendix removed, being hospitalized for colitis & most recently a diagnoses of Fibromyalgia from my rheumotologist. We’ve been trying everything to get relief from the daily aches, pain & fatigue & some drugs have worked & some haven’t. We check bloodwork regularly, each time hoping there will be some big red flashing clue as to what is wrong with me but there never is. Just what we already know, low white blood cell counts, false positive Lyme results & a few other minor abnormal blips. None of which are enough to connect all the dots to one diagnosis but also not enough to ignore.
Then a few weekends ago P was going to the annual luncheon for the Alliance for Lupus Research, he’s been one of their celebrity spokespeople for the last few years, during which he listened to doctors speak about the disease & people, mostly young women, talk about how the disease has affected their lives. When he came home I was in the garage getting everything ready Soph’s Messy Party. He walked in, pulled me close for a big hug & said, “I think you have Lupus.”
I gotta say, I wasn’t terribly surprised by him coming to that conclusion. When I first started looking into this being an autoimmune issue & not Lyme, Lupus was one of the diseases that stuck out to me. I just couldn’t believe how many of the symptoms I had, & not just the joint & muscle pain or fatigue. The rashes, organ inflammation, headaches….the list goes on & on but when I brought this up to my Dr. she looked at my labs & said there’s really nothing there to make a case for Lupus. So we moved on. That was two years ago.
Something about the garage conversation with P stirred something in me, later that night I pulled out all of my records from the last 2 and half years. I went through labs & highlighted everything evenly borderline abnormal, I read the symptom journals I had kept during my last two flareups & then I started to think outside of what I knew to be autoimmune symptoms. There were other odd things that had happened to me over the last year, a big one being getting pneumonia twice. Having horrible chest pain, difficultly exhaling, things that I’ve never had an issue with but now I know are also possibly Pleurisy, a symptom of Lupus. There were also the skin problems. I’ve had hives once in my life, I remember I was in the church parking lot as a teen and doused myself with Clinique Happy’s lotion in hopes of impressing a boy. Halfway during service I got all sorts of itchy & soon become covered in red, lumpy hives. Not my most attractive moment. Other than that unfortunate fragrance mishap no sensitive skin whatsoever. Now, during each one of these flareups (this one I’m in now is my third) I’ve gotten the most bizarre rashes. The third odd thing I never mentioned to her, and I should be embarrassed to admit this but c’mon have you read my blog? TMI should be part of the tagline, I have this ulcerous growth in my nose. I saw an ENT about 2 years ago to make sure it wasn’t anything serious, which he biopsied & said it wasn’t, but then never thought to mention it to my rheumotologist. Until now, now I felt this urge to see her ASAP & lay all of these cards on the table. I literally laid two years of tests, bloodwork, journals & pictures across her desk & being the wonderful doctor she is, she said, “Ok Natasha, let’s start from the beginning.” By the end of the visit she still wasn’t 100% sold on the Lupus idea although she did think it was a possibility until by some miracle the topic of blood pressure came up. I told her I always have had extremely low blood pressure to which she said that’s completely normal for a young, fit, woman. Then I added, “Well except that one time when I was pregnant with Sam & developed preecclampsia.” Her eyes lit up. “What?” So I told her all about how I spent days in the hospital with high blood pressure & protein in my urine counting down the days until Sam turned 37 weeks so they could take her out via c-section.
She leaned forward on her desk & almost whispered, “Now that is the most interesting thing you’ve said yet.”
Apparently if you’re genetically predisposed to autoimmune diseases pregnancy can be a major factor in bringing the disease to life. Preeclampsia in particular is closely tied in with Lupus. That could, just could, have been the beginning of all of this.
All these new facts combined with my spotty labwork led my rheumotogist to recommend I start Plaquenil, the drug most commonly used to help control flareups for Lupus patients. She also encouraged me to get a second opinion, she’s been with me through all of the red herrings over the last couple years from Lyme to maybe those darn orphan bunnies making me sick. Perhaps someone with a fresh perspective could be a good thing.
So this past week I met with a new rheumotolgist, who also happens to be a woman, who I also thankfully adore & she not only came to the same conclusions of my previous rheumo but then some. She diagnosed me with “Undifferentiated Connective Tissue Disease along with secondary Fibromyalgia”. (that’s basically a fancy way of saying someone is believed to be in the early stages of Lupus but doens’t meet 100% of the required criteria for a firm diagnosis) With my family history & the false positive Lyme antibodies she thinks it might also be Rheumatoid Arthritis, apparently the two diseases are first cousins & a patient can often go back & forth with symptoms of both. That’s what she humorously calls “Rhupus”. Oh, doctor humor… She also recommend getting started on the Plaquenil but in addition girlfriend gave me literally a page of homework that was to be my new gameplan for fighting this disease while we also search for more answers.
Assignment number 1: The 9 vials of blood that got sucked out of me this morning. Sorry being such an Attitudey Judy on Twitter & FB but the woman sitting next to me was driving me BUH-NANAS. It could also be that I’ve been slightly on edge lately & a bit, well, bitchy. Although she was annoying, let it be known!
Number 2 is tomorrow, I’m seeing an acupuncturist. I gotta say I’m both nervous & excited about this one. Some people SWEAR by acupuncture & my Dr herself is a believer so there’s really no reason not to try it. I’m just trying not to get my hopes up, some people say they feel better, albeit temporarily, as soon as the treatment is done. I can’t even imagine what I would feel like if that turns out to be true, I’m thinking a drive to a field of wildflowers that I can run through in slow motion would be in order.
Numbers 3 & 4 are scheduling more tests but unfortunately I can’t get into them for a few more weeks. They involve an MRI of my right hand & xray of my lower spine. I’m not quite sure what she’s looking for with the xray but honestly, WHATEVER, if it might help I’ll do just about, nope, I will do anything you tell me to.
Numbers 5 & 6 are to wear orthopedic inserts & to take up water aerobics. She poo-poo’d on my absolute favorite zebra striped Gap City Flats & said I needed to support my joints better. I’m sure she’s right & I did do something that I swore I’d never do, I bought a pair of Crocs for the upcoming cooler weather. They look every so slight-ish like fuzzy lined clogs so I’m hoping they won’t be too shameful. I know it’s petty & ridiculous but I LOVE MY SHOES. They make me happy & the thought of giving them all up is, well, brutal. So I’m trying a compromise. I ordered some orthopedic inserts for the the shoes I already have & also ordered a pair of design your own converse that I’m hoping with the proper inserts will be supportive yet still give me that giddy feeling I get when I look down at my feet & am wearing a pair of shoes I love.
As for the water aerobics I’ve got to do some homework on what’s offered in my area. Now that summer is almost over I have a feeling it might be limited. My Dr. also prepped me that everyone in the class will be at least 40 years older than me & not to let that discourage me, apparently I’m losing muscle strength & I need to build it back up with the least amount of joint stress possible. When I told P this he ever so sweetly volunteered to go to the classes with me. Is that not the most romantic thing ever?! I’m a bit sure that he regretted it once he figured out exactly what he was volunteering for but nonetheless he’s in & that IS AWESOME.
Number 7 is the final one & the one I’m probably the most nervous about. Since this has become a chronic pain issue, meaning it’s not like when you have surgery or break a bone & you only need pain medicine for a certain amount of time, pain management, pills in particular gets to be a very tricky subject. We all have seen an episode of “Intervention” or heard the stories on the news, prescription pain killers are one of fastest growing addictions out there today. There’s so many variables with long term pain care too, not just is it habit forming but what about building a tolerance, which type is best for what pain, are you taking too much, not enough? My Dr referred me to have a Pain Management Doctor to manage all of my, and all of her patients’, pain treatments. I had never heard of this so I asked her to explain. Apparently this guy (or girl) is usually a neurologist or anesthesiologist & now they’re sole focus is to take care of managing your pain treatments. Someone please tell me why all doctors don’t refer to these people?! It’s a fabulous idea, in theory at least, I’ll let you know after my appointment on Monday. The nervousness comes from too many instances where doctors didn’t know what was wrong with me & therefore concluded it must just be in my head. I can think of several times in the ER where they missed the fact that the pain was from a no good gall bladder & appendix & just sent me home with nothing. They basically made me feel like a junkie & those following days of being in misery with nothing to help have given me a major case of gunshyness when it comes to how a doctor treats pain. I feel pretty good though that these guys must know what they’re doing & I need to have a little faith that they won’t let me suffer. Any of you have any experience with this???
So that’s where I’m at, for those of you who have been around LPM for awhile you probably had already guessed that my lack of blogging lately was because I wasn’t feeling so great again.
To be honest I’m having a very hard time processing all of these different feelings that come along with having a chronic pain disease, especially one that I now know I’ll have the rest of my life. Whew, even that sentence was hard to write without some tears welling up.
In a very honest, off the cuff moment over the weekend I asked P if people die from Lupus. Remember, he’s worked closely with ALR for awhile now, at first he said “No, I don’t think so.” Then he paused for a moment & said, “Maybe you should look up more information about it, I’m not really an expert.” So I did, & now I think he knew, he just didn’t know how to say it.
“The outlook for people with lupus has improved as better treatments have been found. Now, nearly 70% of people with lupus live 20 years or more after they are diagnosed with the condition.1“ WebMD
I think that most people with Lupus nowadays go on to live mostly normal, happy lives. Something about that webmd statement haunts me though, my brain hasn’t been the same since reading it. Whereas before I was able to deal with the ‘bad days’ by comforting myself in the knowledge that it won’t always be like this now I wonder, or will it?
Heavy stuff, I know. I keep thinking that I desperately want to come clean that I’m actually a hypochondriac & this is all a play that I’ve made up in my mind. Get me on some good psychiatric drugs & it will all go away, what a crazy thing to hope for right?? I’m starting, ever so slowly, to accept that it’s true. I am sick. And it might be worse than I thought, or maybe not, absolutely no one knows. Expect for God of course, and speaking of, I’m DESPERATELY seeking him lately & trying to find what I’m supposed to be doing with this lot he’s given me. I know, I just know, it’s all for a reason & I know he’s promised to not give me more than I can bear but that’s where what I know ends & I suppose when that falls off faith must begin. So much easier said than done.
“And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it.” 1 Corinthians 10:13
“So do not fear for I am with you, do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand” Isaiah 41:10
At this point in the post you might be expecting me to say that I’ll be taking a break from blogging or don’t expect the same level of projects as I used to but I’m not going there. The creative side of my brain hasn’t gotten tired, in fact I’ve had more fantastic ideas & endeavors pop into my head lately than ever before. I want to paint an entire wall in my craft room with chaulkboard paint & then draw an amazing chalk chandelier handing from the ceiling, I ordered those hair color chalk kits for teens & can’t wait to do another ‘does it really work’ video with Sam, not to mention the slime tutorial with Soph, oh the slime!!
I don’t know how but they will happen. And when a day comes, whether it be tomorrow followed by the next or maybe even the next where I just can’t, I won’t. I’ll try to make the best of each day, I won’t always succeed, there will be pity parties I’m sure. I blame it on my awesomely innate party throwing skills. But I will try, and in the meantime there will be snuggles, lots & lots of snuggles because that, that I can always do.
Oh my friend. That is some heavy shit. What a ton to process. I hope you get answers.
Thinking of you.
Natasha, my grandmother had Lupus so I am very familiar with what you are going through. I wish you the very, very best and the good news is this is something that can be manageable. I am so glad you have a doctor who is listening to you. XO
I’m so sorry to hear of all this. This morning, I was looking up swim classes for my boys for the winter at the Quince Orchard Bubble (not sure if that’s near you…) but they offer water classes – it referred me to this website http://wetyetwaterfitness.com. The website for the bubble is: http://qostc.com/index.htm
Hope that helps! And yeah, there are all old ladies on there, but old ladies can be oh-so-cute.
I hope you feel better soon! I miss your blogs, but take care of yourself!!
Oh thankyou! That’s actually right down the street from me!!
i just dug a little deeper and this link shows what each class is good for – health wise – http://wetyetwaterfitness.com/pdf/QO.pdf glad i could help….
i also have a friend, who, i am guessing is probably around the same age as you who was in the last 5-8 years diagnosed with Lupus – I’d be happy to put you in touch with her because I believe she sees a specialist in the area. She has a young son and lives in NOVA.
I was having some weird things going on… and I kid you not I thought it was lupus after researching and reading up on WebMD. But after blood work and an MRI…turns out it’s very low iron levels and a pinched nerved and bulging discs in my neck. I am a single mom of a 4 and 3 year old girls. I understand where your coming from bc for me I can’t afford to be sick I am all they have. I pray that it’s nothing serious and a quick fix! Have faith bc as you say, God gives us nothing more than we can handle. Your girls are adorable and I listen to the Kane Show every morning. You will be ok… I know it! 🙂 good thoughts to you my friend.
Thanks Nancy (:
Were they able to fix your back problems?
My son was in the hospital for colitis and one of his doctor’s suggested having the “pain team” i.e. pain doctor, come in and see him. He was on a morphine pump and tons of meds… The pain doctor tried zapping him with a little electrical box (didn’t do anything) and then said, here, try this medication (Bentyl). Bentyl isn’t a narcotic, addictive, etc. It is a smooth muscle relaxer. His pain went from sky high to slightly annoying. Since his pain was from the constant churning in his gut, this NON-narcotic, acted like a pain killer by stopping the motion. The doctor said that they know meds better than most of the doctor’s and if they listen closely enough to the patient they may be able to actually get them off pain meds and onto a med that stops the cause of the pain. And, wow. Did this change his life. So give the pain doc a try (or maybe more than one pain doc, so you get one that is inquisitive and smart), you never know what they might have up their sleeve.
God Bless,
Bren
Thank you so much for sharing Bren! That truly gives me hope. (:
PS- I took Bentyl too with the GI issues in the hospital, didn’t work for me but so happy it worked for your son! Also so sorry you had to experience it with your child, the only thing worse, and FAR worse I imagine, is watching a child go through something like this. Kudos to you for being such a brave mommy!
Wow- there is nothing more frustrating than not knowing what is wrong with you. Or having an issue you can’t fix. I’ve been in those situations. I’m praying for you! Glad you will continue blogging and doing what you can. And thank God for the doctor that is helping you.
It took a couple of sessions for me to come to love acupuncture, so stick with it! It helped me with a variety of issues! I recently left the Baltimore area, but highly recommend Johns Hopkins! If you ever need more opinions, they are the best. They helped me with a really wonky health issue. They usually have water aerobics at YMCA year round. Nothing is worse than not feeling well. Hope you feel better soon!
Oh Natasha! You poor thing. I really hope you find all the answers you need. So sweet of P to take aerobics classes with you. And you can rock any shoes! You’re beautiful and an amazing mommy. Never think differently. Remember, in order to be the best mom you can possibly be, you must take care of yourself first. I’ll keep you in my prayers, sweet friend!
Oh, I teared up reading this, Natasha. Between listening to Kane and reading your blog over the years, I feel like you’re a friend. You’re so brave to own all your emotions and open up. We’re all pulling for you now!
Natasha –
Praying for you to find an answer! I have had Lyme, Lyme Arthritus, and gasteoparesis in the past. Both the Lyme and gasteoparesis were difficult to diagnose. Thankfully I have little to no symptoms now. But I can relate somewhat to what you are going through. The first step is always staying positive. I don’t mean you can’t cry or feel sorry for yourself because let’s face it, you definitely need those moments. I mean in general, stay positive and have faith. Not just in God, but your doctors. It sounds like you have a great doctor – that really helps knowing the doctor cares for you and youre not just a patient. And you have a plan for helping in feeling better. Just keep it up! Ill be praying for you. (Side note: I’m a big fan of your husband’s radio show and can’t wait to hear him talk about his adventure in water aerobics!) 🙂 One last thing, be thankful. No matter what troubles you’re going through, someone is always there for you. You also have an amazing family, and thank you for keeping up with this blog. Can’t wait to hear how you’re doing and to learn more crafts! Hugs!
I’m sorry you are going through all of this. It’s hard not knowing what’s wrong when there is so many things going on. As someone who was diagnosed with SLE lupus almost 10 years ago I can relate to what you are going thru right now. It’s a reliefs to have some answers but at the same time scary because you have those answers. I can tell you that my lupus hasn’t been easy to diagnose as so many autoimmune diseases can have similar symptoms and I have decided to not take meds to help with the joint pain because I’ve been so afraid of becoming dependent and then having to up the doses. There are days thy my joints are in so much pain that just getting up from bed is work and having a 3 year old and an 8 month old makes it so much harder. But I have to do what I can for them. It’s hard and while I only know of you by listening to P talk about you and by reading LPM I want you to know you are not alone. Will be thinking about you and praying for you.
I don’t know how you’re feeling and I don’t have any medical advice to offer, but I do know that God is constant and even on your hardest day and lowest point, He’ll be there to hold you and love you. I know it’s hard to see that sometimes and there have been times in my life when I wonder if He even cares, but He always has a grander plan than what we can see. My life verse is Jeremiah 29:11, “‘For I know the plans I have for you’, declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.'” This verse has gotten me through some pretty rough times and looking back, I see why He brought those things into my life. I’ll be praying for you that the pain lessens and that you’ll be granted peace and a way to see how God is molding you through this. <3
Thank you so much for sharing your story. I too am struggling with a health condition that still doesn’t have a cut and dry diagnosis after over 4 years of symptoms. I can sympathize with everything you talked about: the judgement from friends, the guilt from being unreliable, the thoughts of being a hypochondriac…all these mental beasts while you’re physically knocked down. It just plain sucks.
I love following your blog because you are very inspiring through your crafting, cooking, or, in this case, strength. I admire you for your bravery and will to share your story. I’m looking forward to hearing more about your health journey, especially your experience with acupuncture as I have been considering that as well.
Sending you a virtual hug. : )
Thinking of you lady! The good thing is that you have made tremendous progress in nailing down what is going on and can start treating the symptoms. I know Sport and Health does water aerobics classes and such (both Gaithersburg and at the Rio). I’m sure the other gyms in the area with pools do as well. My trainer does a lot at the Kentlands, she might know of some other options too. Keep us updated and sending so many good thoughts and prayers to you and the family!
Oh lady, I want to hug you. I’ve always admired for open and honest approach. In my profession I am familiar with pain management programs and they are great. The best ones use a holistic approach, pairing medicine with information and therapy- it is really important patients understand the mind/body connection and the affect stress has on pain, tolerance, and causing symptom flair ups. It sounds like you’re in good hands but if you don’t like the person you meet I know docs in your area and will get names for you. Thinking of you and your lovely family. It’s rough when answers lead to more questions or scary truths but your an amazing, brave soul.
Hang in there Natasha! I don’t know your friends, but I can guarantee that they understand you aren’t feeling well, and that you will do anything possible to make sure your kids have a good day even if it has to be with someone else. Don’t beat yourself up for not thinking you are the best mom you can be because you ARE!! Anyone that reads your blog can tell how much you love your family. Your faith in God will get you through these uncertain times. It always does…take care 😉
I am so sorry you are still suffering without a concrete diagnosis or care plan. I pray that these new treatments help you find relief. A good friend has lupus, though she was diagnosed long before I met her. Hers was also a long journey to a diagnosis. At one point a doctor told her it was multiple sclerosis! She is now doing well, and her flare-ups are not so common, usually triggered by high stress situations. She is big into natural remedies, perhaps I can ask her for some natural treatments that work for her and pass them on to you?
I would SO SO SO appreciate that Laura! The more I’m hearing from you guys and others the more I’m becoming a believer that natural medicine isn’t all fluffy granola hippie stuff. I think there’s really something there…I just need some guidance as to where to start!
My email is natasha@littlepinkmonsters.com
Thank you so much Laura!
Just a note with the supportive shoes, Birkenstocks are THE BOMB!! I have issues with my hips from pregnancy and they are practically all I wear. Another one is scholl shoes, “moraga” are super cute and supportive and comfy!
I hope it all just comes together for you, and you know you’ll be that person that lives another 60 or 70 years!!!!! =D
LOL, Birks!! I totally remember, in the early 90’s I desperately wanted a pair of birks. I saved and saved and saved & when I finally got the pair that had the two giant buckles across the top with the one giant buckle in the back I knew it…I WAS COOL. At last!! Little did I know I looked like a darn fool wearing such giant shoes with my chicken legs. Lol! You know what though, a bit later I bought a pair that was a bit more delicate and I actually loved them, I wore them for years…hmm, whatever happened to those? I’m going to look into it now that you mentioned it. Maybe I can work them into a boho-chic style. (;
About a year and a half ago, you posted a link to the daily devotionals by Sarah Young that you were reading. I happened to read that post at a time in my life where I was feeling spiritually lost and desperately needed guidance, and I ended up falling completely in love with both Jesus Calling and Jesus Today. Those devotionals have gotten me through some incredibly tough times and continue to serve as a perfect reminder of God’s unfailing love and the hope we have in Him. I have you to thank for that, and I want you to know how incredibly grateful I am that you are open and honest about your faith-walk through the ups and downs of your life. I know it sounds super cliched, but I truly believe that if God brings you to it, He’s going to bring you through it. It may be a frustrating or long road, but He will provide you exactly what you need to face this road bump. After all, he’s already given you a wonderful support system– just look at how many loved ones surround you 🙂 I’ll be lifting you up with prayers for peace of mind, solutions and a regained sense of normalcy!
“Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.” -John 14:27
*HUGS*
Wow. Wow Kathleen, just wow.
Sometimes I feel cheesy sharing my devotionals but to hear this from you…wow.
Thank you so much for sharing, you have no idea how much it means to me & I gotta say, at a time where I’m feeling a bit ‘lost’ you’re comment reminds me that God really does speak to us through eachother.
Thank you so so much.
I dont have any medical advise to offer you but I just want to applaud your continued courage and strength as I have been following you for years now. Who you are is amazing, illness and all. Thank you for sharing your story and as always for being open and honest. It’s easy to get caught up in the ‘bs’ of everyday life and the drama that we easily forget what’s important- health and family. Even though your health isn’t the best right now and the unknowing ness can eat at you- sleep peaceful knowing you’ve got an elephant amount of support from your lovely husband, undying love from you girls and your family and us here at LPM. I feel like we’re friends (in the most non creepy way possible I mean this) and friends are there for each other. You inspire me everyday- from awesome tutorials to how to be a better mom when all you want to do is sleep. You, my friend are amazing! Yes, God won’t give you more than you can’t handle but he also will provide you; with love, strength and encouragement. Please know that. Please have that in your heart. Now I feel like I’m rambling…another thing you shouldn’t do on the internet at night- post a comment and start rambling. Anyway, i just wanted to tell you that I pray for you, I pray for your peace of mind. I am glad you now have a game plan. Continue to be faithful and pray. I know I can speak for all us LPM followers that we are here to for and sending you big computer hugs from the bottle of our big pink glittered up hearts (in true LPM form) 🙂 Xoxo
Oh Erika, nothing like making me tear up at 7am! Your words are beautiful and truly make me feel better. I just can’t believe how much love could get reciprocated through a blog, I mean who know?? It’s the internet, the same internet that creepers hang out on. We might as well have become friends on the middle of the interstate but somehow it’s happened and I truly thank God for you too.
Pink Glittered Love right back at ya! (:
I can’t imagine all that you have gone through for the past two years, but I hope that now you may find some peace. I hope that everything works out for you.
I have a very close friend who was diagnosed with Lupus as a child. I know it is tough, but it is manageable and that’s good news. Keeping you iny thoughts/prayers.
My sister was diagnosed with lupus and a handful of other related autoimmune diseases in January. She has researched a ton, and has controlled many of her symptoms through diet… Basically Paleo, but also eliminating night shades, etc. I know that she is on a couple FB groups for people with autoimmune diseases, etc. She has been able to get many of her symptoms under control… It would definitely be worth looking into further?
P attending water aerobics with you is the definition of love. That is just awesome. Hang in there… And don’t be too hard on yourself with the mommy guilt! You aren’t choosing to send your kids on a play date with a nanny so you can feed your crack habit at home! You are not feeling well. You can’t take care of others until you take care of yourself. My guess is that NONE of your friends were judging you, and that they were more likely concerned for you. (And if there was judgement then they aren’t friends!).
Oh Wendy, you crack me up…no pun intended. (;
I would LOVE to know more about your sister’s FB groups if you/she wouldn’t mind letting me in the club. I just ordered an ‘Eating Naturally for Lupus’book that was recommended on Amazon, I have no idea how legit it is though. I’d love to know more about how she educated herself.
I just FB messaged you a bunch of stuff… 🙂
I have Lupus and Sjogren’s Syndrome. I also have all the symptoms you have listed. I absolutely feel your pain over the diagnosis process. Autoimmune disorders are always difficult to pin down – they thought I had RA for years and it was actually the Sjogren’s causing my joints to swell up and the exhaustion. The problem is there are so many symptoms that could be a part of any number of them that they are difficult to pin exactly down.
I’ve been with my current doc for 6 years now – he is great and we found the right combination of meds. I take Plaquenil for the SS and Arava for the Lupus. It keeps everything completely under control – I’m talking 100%! Don’t give up. Do your research and try the different meds. They all take a LONG time to kick in (the arava is a long acting drug, once you start it, it can be in your system for up to 2 years.) I mention this because that has been the miracle drug for me. I was in the middle of one of the worst cases of flair ups I have had in the 11 years of battling my auto immune symptoms. Once I started it that all went away and I haven’t had a flair up since. I have been able to stay away from all the pain management drugs with this treatment also. A lot of doctors won’t even suggest it for women because you CANNOT get pregnant on it, but it may be worth some research on your part.
I’m 33 (34 soon) Lupus can be managed and it is in no way puts a sentence or expectancy on your life. There are a few forms that are much more serious (lung and kidney mostly) but they are extremely rare. I’ve had all the chest pain and shortness of breath as well, spent tons of time in the Pulmonologists office and it is just a typical symptom of the Lupus I have. The arava stopped all that pain as well.
Keep your head up and stay on top of your own health. You know your body best and if one doctor won’t listen go to a different one. God bless you for putting all this out here!!
Hey Natasha!
Thank you for sharing this. I’ll be praying for you guys 🙂
(i read every new post, and very rarely comment. Today I felt compelled to say something, just so you know you have my support and prayers. Sad thing is, I couldn’t come up with anything to say. Sorry for the lame comment content)
Hi Natasha. I’ve been a reader of yours for a fee years and have followed along on your health journey, since I’ve been there myself. I have to tell you….Lyme is INCREDIBLY difficult to diagnose, and you fit the symptoms to a T. I work at a holistic health center as a nutritionist and every day we see patients who went years without a proper dx, but once they saw a Lyme-literate doc they had a real diagnosis and a treatment plan. I also want to mention that if it IS autoimmune, you should strongly consider altering your diet. I have a coworker who had a diagnosis of late stage lupus at 33, and through diet and lifestyle modifications she is off all 7 lupus medications she once took and is the picture of health.
good luck with everything. I’ve been there done that, and remember the feeling of lying awake at night wondering if whatever mystery disease I had would kill me. I truly hope you find some answers soon.
Jamie
Oh shit, Im crying at work! Its 8:45am, I’ve had a shitty single mommy morning and then I read your post. Im getting teary eyed and then I hit the bible verses and BAM! (tears start to flowing) Just what I needed to see to push on. And then I read the comments and flow of support and double BAM!!! Ah I love this blog and your readers. We are like a small army of overflowing, much needed, support. I pray for the best for you. And I thank you sooo much. I feel kinda guilty that I sorta benefit through your misfortune posts, if you know what I mean. Anywho, I have to go touch up my make up and hit up the Keurig (again). Thank you and you’re in my prayers! 🙂
Wow, Natasha, so sorry to hear that you are still having problems. I have been following your story ever since you posted about having problems. Let me just say I totally understand where you are coming from I was having major migraine issues and didn’t know why. I thought it was just my normal migraines that I was having since they are hereditary on my father’s side. No, these were different I thought literally I was having a stroke! I ended up having to go to the ER on Christmas Eve. They of course just gave me some drugs and moved me right along which did not cause the problem to go away. Went to my neurologist who told me that I needed to have an MRI done and a lumber puncture which when they stick a needle up your spine and drain the fluid kind of like an epidural. Well when the doctor was draining the fluid he figured out at that moment in the procedure that I had a lot of fluid that was draining. No one could understand why I was having these stroke like symptoms until I had this lumber puncture done and they figured out that I was suffering from Pseudotumor Cerebri which mean water on the brain. I was on medical leave for about 3 weeks and it was no fun. Just know I am praying for you girlie and continue to be an INSPIRATION. Thank you for being raw and real.
Hi Natasha,
I’ll cut to the chase, my mom has had a similar battle with a lack of diagnosis and treatments that work for a while, then become less affective over the last 10 years. It’s just recently that she found a great doctor based out in Utah and has come to a more helpful diagnosis, IGG 4. A decade of lupus/no lupus conversations was frustrating but knowing that a med she was on and didnt need to be almost really hurt her. For whatever it’s worth, trust your instincts and get your IG levels tested. She is feeling SO much better with IV IG treatments and its been a long time since that feeling was an option. Happy to connect you if you want more details. This battle is one to be shared as the info and advocacy are really on you. Thank goodness you aren’t alone! XO Natalie
I read your post, and I am praying for you! Also, I have a new baby, and my mom told me this: “Never feel bad about putting yourself first. As women and moms, we feel the need to take care of everyone else first, and put our needs last. For your sanity, and the sanity of your husband and children, you owe it to yourself to do whatever you have to do to be kind to yourself. Hire a nanny, hire a maid, give your husband chores and stand by it.” You are awesome, and I hope you get the answers you need to move forward and be healthy! You are loved and loving; you are blessed and a blessing to others. Keeping you in my thoughts!
Hey Nat, you are such a strong, creative, funny as hell, beautiful person. My heart aches for you. Try not to be so hard on yourself. The girls are happy and guilt just adds to your stress. You are loved and I will continue to pray for you my dear friend. Hang in there champ! Love ya…Nicci
My mom always struggled with health issues her whole life and my entire childhood. She had SEVERE fibromyalgia, arthritis, intense migraines and crazy hormone issues that led to a full hysterectomy when she was 30. Like you, she was (and is) super crafty and creative. While I do remember her having to sleep a lot and being out for a couple days because of a crazy migraine (15-20 years ago they didn’t have the same migraine meds they do now), I also remember her doing really fun stuff with us. Like painting my face like a colorful butterfly, and drawing out plans for a secret passage way in our house. So don’t feel guilty- your girls may have moments where they wish their mom was able to come play, but they will also cherish and remember the amazingly fun things you do together too. And, them remembering the times when you are too sick to play will only make them even more sensitive as they grow up to others who are sick. I hope you will find a way to manage the pain and sickness. My mother finally did and she has been able to return to work and live with much more energy now! There is hope!
Hi Natasha,
something about your post compelled me to leave a comment..
now to back up, I am NEVER one who comments on anything… even though there are a few blog I follow. I am always just a “visitor”… looking for cooking tips, makeup tips, etc. I guess something about reading a blog by a person I don’t know in real life.. kind of embarrasses me still… I feel like I’m looking at something I’m not supposed to, like I am invading someone’s privacy, when I read the intimate details of their lives on the blog – but at the same time I want to know! so I read on! now, leaving a comment would just leave evidence of me following a bunch of strangers’ lives!!! so that’s why I never did.. haha it sounds silly i know, but I can’t help it.. anyway, here I go!
I became familiar with your blog through your husband’s show – I lived in Bethesda for a year after college for work, and I completely got hooked on the show. I got married and live in Philadelphia now, but I still listen to the show from time to time on the website, iheartradio, etc.. this may sound creepy but my favorite segment is when Sam does the Skam!!! your children are so ridiculously cute and beautiful… I can’t get enough of them!! Anyway, I started reading your blog after you were briefly on their website with the other blog.. and now needless to say, I religiously follow the blog almost every day before I start work… I guess it’s my way of warming up to the day and starting off the day right! I LOVE your video tutorials.. and your stories of your family, faith, etc.
I can’t even begin to imagine what you’re going through, but I just wanted to write to you in hopes of encouraging you a bit. I’ve been realizing more recently how unfair things may seem, even when we should be content in knowing that it’s all in God’s control. We aren’t built that way though, to be so patient and faithful… although we should be. You are an amazing woman, mom and wife. Your family is so blessed to have you. I don’t have children yet, so I know I can’t talk like I know anything, but one thing I want to mention is that you should NOT feel guilty about leaving your children with a nanny or a babysitter.. they NEED you to get better and that is more important than not being there for them at that very second, or being judged by others (even though, who wants to be judged really?!) When I see the interaction between you and your kids, I think to myself, I hope I get to be a mom like that some day.
anyway, I think this post ended up being so much longer than I expected to. sorry! and thank you, for always helping me start off my day right with your writing 🙂
Hi Jenn!
I’m so glad you finally commented, lol! I know it can seem weird because truly none of us on her know eachother face to face but I really do believe you make true connections with people through blogs. It’s weird but true.
Anyway, thank you so much for your sweet words, that mean so much, also thank you for sticking around even after moving, I love hearing that!
And I’ll tell Sam you’re a fan of her skams, she’s such a little ham and is constantly asking daddy when she gets to be on the radio again. I do believe he might have created a monster. (;
Hi Natasha,
thank you, thank you thanks you for sharing your story.
My co-worker was just dx with RA and she is in a lot of pain. Her Doctor initially thought Lyme disease. Long story short, I have been reading your blog for years and after reading this entry and the part about your pregnancy, it clicked.
I forwarded her the entry and she found a lot of similarities between her situation and yours. This is something she is now looking into and will be discussing with her doctors.
Thank you for sharing something so personal. Good came out of it and my friend is very grateful.
Good luck to you on your journey and may you continue to write entries that are inspiring, uplifting & funny. ( I love when i see that i have an unread entry on my feed.)
Warm regards
Maggie
http://www.healingstrong.com
http://www.chrisbeatcancer.com
Natasha – please please please immerse yourself in these sites with an open mind. Modern day medicine is not open to the fact that you can heal anything through what goes in your mouth. It is very sad. Our family has been hit by disease – Lyme, breast cancer & RA – all cured through diet & daily exercise. I am talking a 30 min walk to get your lymphatic system operating. nothing crazy. Watch the documentaries (gerson miracle, fat sick & nearly dead, etc) A lot of these pertain to cancer, but those same modalities can cure any systemic illness u r suffering. My heart goes out to you & I want to jump through the computer with all the knowledge I have in my head because I too am a mom of 4 who was crying on the couch, incapacitated by joint pain swelling & unstoppable fatigue. Through eating whole (I went Vegan) and daily walks I not only returned to my old self, but went on to run a marathon & be in the best shape of my life. u can too. I am praying for you. I am not a health quack. I am a regular mom like you who saw the light. No my kids no longer eat McDonalds and we don’t go out for ice cream and they might have moments of feeling “left out” but what they are gaining (a plugged-in mom) is HUGE compared to what they have “lost” –
Natasha, my mom has beginning stages of R.A and has gone Gluten Free and it has helped her joints tremendously. She tried herbal meds, accupuncture, chiropractor, you name it, she tried it and this is the only thing that has worked for her. Maybe cutting out the gluten in your diet would at least help with the joint pain? Just a suggestion, seeing how my mom has benefited from it, thought I’d pass it along.
I hope you find some comfort soon and know that everyone is praying for you.
And snuggles are all that matter. I hope you find some answers <3
I’ve seen acupuncture work. My dog was so sick (valley fever) I was going to put him down at age three. Found a doggy acupuncturist. He barely limped in, received a 45 min treatment and walked out happier than he’d been in months. Had a few more intense sessions and then maintence from there.
Never worked for me though. My brain kept getting in the way. ” I’m paying how much for this”. ” does this guy know how to do it right for my body/needs”. ” how long is my car ride home”. ” what groceries do I need”. I could never let my mind give my body what it needed. 🙁
Try aqua Zumba! It is a zumba pool party with music.You will find a younger crowd there.Water exercise is low impact .I also live with chronic pain due to arthritis.Find a person who will listen to your fears and encourage you.Have faith that you will feel better! P.S.. thank you for your blog
Oh, about shoes, shoes with good support and have style? Try Dansko !
My ex-boyfriend’s sister was diagnosed with Lupus 10 years ago. She has gone on to earn her Master’s, almost finish her Ph.D, get married, and have a baby. She was only 22 when she was diagnosed. She is not only alive, but living a full life. Don’t lose hope. Don’t be discouraged. Be encouraged that God has provided you with a strong support system, the financial means to go to numerous doctors and force them to listen to you (some people do not have that option), and a few trusted people who love and care for your children almost as well as you do. God always provides, even if it isn’t necessarily the way you think he should. He gives you what you need. Know that you are strong and even when you think you can’t take anymore, He will hold you up.
Thinking of you and your family in this rough time you are going through. I hope you get the answers you want and need so you can manage this problem. You are a great mother, and sometimes you have to take a break. Rest is important too. Don’t worry of what people think. You know if you could have went to the farm you would have. That’s all that matters.
Hang in there, Natasha! This isn’t a race, and the name of the game is to get you to a place where you’re feeling good consistently – not just for a week, a month, or even one year. And to get to a place where you’re okay with the fact that on some days, you’re going to feel crappy and take time out for yourself. I’m now 2 years post-diagnosis (I’m diagnosed with Sjogren’s Syndrome, fibromyalgia, undifferentiated connective tissue disease, and IBS amongst other things) and I feel like I’m working every day to find a good balance. I’ve really had to sit and re-prioritize my health and stop feeling guilty about lessening my work load, declining some of my invitations, or just letting things go from time to time. I’m still working at it, but I’m getting there.
I think I may have told you this before in your comments, but I think the biggest key to feeling better is to find someone you trust to treat you – someone responsive, honest, and intelligent. I love my rheumatologist. She doesn’t talk down to me, she is very honest about what will work and what won’t, and most importantly – she believes me when I tell her I feel crummy. The other piece of advice a good friend (who’s a doctor) told me, is: once you find the rheumatologist that you love, she should coordinate your care so you don’t have “too many doctor” syndrome. Following every treating physician’s advice in itself is totally exhausting. You’ll need an ally to help you weed out the chatter and focus on what’s actually important. I thought this was fantastic advice. And it helped me alleviate some guilt when I wasn’t being a 100% adherent patient (which is hard to do when you’re seeing like 5 or 6 different doctors).
And no matter how you feel, keep moving. Low impact exercises in the pool, yoga, and time spent in a hot tub were the best for me. My rheumy told me even just walking in a “warm” pool would be helpful. I also found accupuncture VERY helpful.
And never feel guilty about having some me time. Stress is your number one enemy!!! You can’t be a good mom when you’re not feeling well (or a good anything, really), so if you need to hire a sitter to relax and feel better, then just make it a part of your care plan!
Lastly, make sure you find a good opthamologist if you’re taking plaquenil and get your eyes checked every 6 months to make sure you’re not having any toxicity buildup in your eyes. The drug is relatively safe, and I definitely think it’s a welcome addition to my medication rotation (I’ve been on it for about two years now).
It’s so hard for people who aren’t chronically ill to understand what we go through, and the frustrations and the challenges we have. But there are a LOT of us out there! You’re not alone. Take good care of yourself!
Hi Natasha I have been reading your blog for a couple of years and after reading this I just had to respond. My daughter who is 36, was diagnosed with Lupus at 16. She had so much pain in her joints and couldn’t brush her own hair. We had her tested for Lupus after reading an article about Rhnoads and how if you have that you could have Lupus too. Her hands and feet would go completely white with temperature changes. Sure enough they were pretty sure it was Lupus and put her on Plaquenal and we took her to a naturalpath who suggested she cut out all red meat. She has not eaten beef or pork in the last twenty years. She did get a shot in her elbow and knees for the pain and she has never needed the shots again. She has been off the Plaquenal for over ten years and still does get some migraines weather related and should stay out of the son. She is a teacher and has a three year old son and trying for another baby. Overall she is pretty healthy and goes twice a year for blood and see a Lupus specialist to keep on top of it. I was devastated when she was diagnosed but she is living a completely normal life with no meds at all. When she was pregnant we thought she might have some of the symptons come back but she was fine. I just had to let you know that their are lots of people with Lupus and can be very manageable .
Thanks Lyn, I’m SO happy to hear your daughter is doing well. The only thing I can think of that’s worse than having this disease would be to have one of my children have it. I can’t even imagine how your heart broke for her.
I’ve been doing a lot of reading lately and I keep hearing about cutting out red meat, I think there might be something there which makes me a bit sad but a thick juicy steak is by far my favorite food on the entire planet. Weird, right? I’m thinking it might be worth a shot though…
THanks for taking the time to write, much appreciated!
Love,
Nat
It sounds like you are in the best of hands – doctors, your sweet family, and your own. Believe in your care and you will enjoy all days! Even if one is “bad,” you’ll be able to get through it with the knowledge that they aren’t always that way. My mother-in-law just celebrated her 65th birthday and she has lived with lupus for many years; from her women’s groups, walking groups, yoga classes, and graphic designing work, she has fun every single day. You can too!
Also, I had a dream last night that your husband had become friends with my husband and I, and I told him how I am a huge fan of yours, with your mommy life and your clever blog. You got this 🙂
Oh how funny! The dream, not your MIL!
Thanks for the encouragement, it means the world, (:
Hi there from Downunder 🙂 I read your post with great interest and I know you are right. I have been suffering with Crohn’s Disease for 40 years which was around the time of a miscarriage which occurred between the birth of my 2 children. The miscarriage was certainly life changing and life altering. Since then I have developed Crohn’s, and Inflammatory Arthritis both are Immune Disorders (I hate that word…disorders). I have also developed allergies to loads of things. A Nurse friend of mine once told me that life changing or life altering experiences can trigger Immune Disorders but I kinda didn’t really believe it till now. Never give up Hope darl and know someone far far away is thinking of you from time to time. I found your blog some time ago and made 3 of the Easter Bunny Bath Mitts to send to my 3 grand-daughters who were living in France at the time (they are now back in Australia). Do keep us updated as to how you are going be it good or otherwise 🙂
Thanks Merryl, my girlfriend here has Chron’s and man, what a devil that disease can be. I’m so sorry you suffer from it.
I can’t tell you how nice it is to hear from people all over the world! That right there puts a smile on my face!
Thanks again for taking the time to write, much love,
Nat
Oh Natasha, Im so sorry to hear this. 🙁 But Ditto what Erika said. I will be praying for you and hope you get some answers soon!! I will be thinking of you friend!!
And Healthtrax(sp) in germantown I have heard has amazing water aerobics classes.
Natasha, I am so sorry you are dealing with the reality that comes with a diagnosis or an almost diagnosis. I know you must have so many feelings about this and I pray for your peace of mind and health, but with a diagnosis you can actually have a specific treatment plan which will target your illness and make you feel better. I saw you were interested in some natural healing, and I work for a neuropsychology practice and mental health/emotional health is closely tied with illness and disease- in the years I have worked there aside from getting knowledge that medications do sometimes work, I have learned that things like transcendtal meditation, exercise (especially yoga), diet, accupuncture, therapy, even going as far as having someone send you or do reiki on you could help you feel better. Although going vegan, vegetarian, or even just eating organic may sound extreme to you, it could also help a lot too. Try to sleep better and use melatonin rather than ambien perhaps. The less medications in you the better unless yoir body can’t deal with it. I know some of these things aren’t that easy to incorporate in a busy life with kids and commitments and not everything is proven to work but if you could just try a few and see if they help, perhaps you can start healing (i would esp. Recommend transcendental meditation- see the research on it, diet, accupuncture and yoga). I wish you the very best and I will continue to read your blog and see how you are doing. You are such a wonderful person, an inspiration to other women and mother’s- and a great voice and platform to talk about all the issues that come with life. Life is not fair but every single thing that happens in it, makes you appreciate each second of it- however hard it is. I will send you positive vibes, prayers and will light a candle for you. Stay strong, believe in yourself and the strength of your body and heal.
Hi Natasha,
I am so very sorry for what you are going through wit this new diagnosis or kind of diagnosis you are receiving. I would try to keep in mind that having a diagnosis, while scary, is the route to getting targeted treatment that will help you heal and feel better. I know you will be following your doctor’s orders to relieve your symptoms but if you want to supplement those indications and are open to alternative healing, I have some suggestions for you.
I work for a neuropsychology practice and I have learned that mental health/emotional health is closely tied to physical symptoms and diseases. Some of the top recommendations, aside from medications (that are only suggested to be used short term), are the following: transcendental meditation (there’s a slew of research on the benefits of this for all types of issues), yoga, diet (whether it’s just a balanced diet, eating a diet with little processed ingredients, eating a diet rich in omegas, going vegetarian, vegan or just organic- all great options, even dairy free could be great depending on your comfort level), acupuncture (we recommend this a lot too), daily exercise, therapy (everyone needs an outlet), and even going as extreme as having someone do reiki for you. I know this sounds so out there but even if you can do a few of these things, you may feel better. I know you talk a lot about sleep issues especially with flare ups but have you considered melatonin rather than ambien? Have you tried relaxation techniques (“squeezing an letting go” going through each body part)? I really hope that in addition to your medical plan, you can alleviate some stress and pain with other outlets.
I hope you are aware that you are an inspiration to other women and mother’s and I hope you believe in not just the strength of your body but the strength of your mind and the strength that motherhood has facilitated to you. Strength comes from within and I applaud you for sharing and talking openly on this wonderful platform you have- as support will pour in and all these positive comments and well wishers will also help you through this process! I will pray for you, send you positive/healing vibes and light a candle for you. You can do this Natasha.
Hi Natasha,
I am so very sorry for what you are going through with this new diagnosis or kind-of diagnosis you are receiving. I would try to keep in mind that having a diagnosis, while scary, is the route to getting targeted treatment that will help you heal and feel better. I know you will be following your doctor’s orders to relieve your symptoms but if you want to supplement those indications and are open to alternative healing, I have some suggestions for you.
I work for a neuropsychology practice and I have learned that mental health/emotional health is closely tied to physical symptoms and diseases. Some of the top recommendations, aside from medications (that are only suggested to be used short term), are the following: transcendental meditation (there’s a lot of research on the benefits of this for all types of issues), yoga, diet (whether it’s just a balanced diet, eating a diet with little processed ingredients, eating a diet rich in omegas, going vegetarian, vegan or just organic- all great options, even dairy free could be great depending on your comfort level), acupuncture (we recommend this a lot too), daily exercise (although yoga is usually recommended as the best type), therapy (everyone needs an outlet), and even going as extreme as having someone do reiki for you. I know reiki sounds so out there but people have reported feeling a lot better from this type of healing. Even if you can do a few of these things, you may feel better. I know you talk a lot about sleep issues especially with flare ups but have you considered melatonin rather than ambien? Have you tried relaxation techniques (“squeezing an letting go” going through each body part)? I really hope that in addition to your medical plan, you can alleviate some stress and pain with other outlets. And again, you don’t have to do all these things, or do all these things simultaneously- the key is balance and feeling better.
I hope you are aware that you are an inspiration to other women and mother’s, and I hope you believe in not just the strength of your body but the strength of your mind and the strength that motherhood has facilitated to you. Strength comes from within and I applaud you for sharing and talking openly on this wonderful platform you have- as support will pour in and all these positive comments and well wishers will also help you through this process! I will pray for you, send you positive/healing vibes and light a candle for you. You can do this Natasha and you will feel better now that you have something to work towards. Keep yourself doing things you love and try (TRY- I know it is impossible not to do, but just try) to not stress. You have a wonderful family and being family oriented is a wonderful, fulfilling and natural thing- follow your natural instincts and you will be happier and healthier.
WOW, thank you so much Stephanie, that last paragraph, the part about already having strength that motherhood has given me, wow, that really resonated!
I’m allll about trying natural remedies as well so thank you for your suggestions. I’m currently going to a therapist alone & with P to help deal with this as well as switched to melatonin from Ambien about 6 months ago. THAT was such a good decision, hard at first but worth it. Although there are nights where I’m not gonna lie, I’d give anything to have something that would just knock me unconscious!
Thank you so much for taking the time to write your encouraging words, you have no idea how much it means. (:
Natasha … I was diagnosed with RA several years ago … and my family doctor still feels it is lupus, but after being on plaquenel (spelling??) for 5 years, and not noticing any major difference in my symptoms, I went off the drugs (4 years ago). I feel better for not being on them (and also feel better by not being on the Plac. as the worry re: damage to my optic nerve from the drug weighed on my mind the entire time I was on it. IF they didn’t tell you about that risk, ask – and make sure to go top an opthamologist 2 times a year to check your optic nerve — it can make you blind. Not trying to scare you, sorry, just want to be sure you know of the risk).
You and I sound a lot alike … I also had to have orthotics … and would recommend actually going to a podiatrist and chiropodist (again, spelling??) to have the custom orthotics made for your feet … the ones you buy in stores are not as good, and the dr. will also give you advice on the proper shoes to wear with them to accommodate the issue you are trying to overcome. proper orthotics took the pain right out of my knees, hips and ankles – a HUGE bonus! They will likely tell you that converse and crocs are not good for your feet. there are stylish shoes on the market for peeps with orthotics … check out Dansko – beautiful shoes, and made to support your feet well (and have removable inserts so your customs will fit in).
I wish you luck on your journey … my pain has subsided (is in remission) after many years. I refuse to let them diagnose me with fibromyalgia, and am hesitant whenever my family doctor puts lupus on me as a label … there is such a stigma to both, and I am not ready for that.
My husband gets his made a a podiatrist and we found that it is covered by our insurance. He gets a new set once a year and they will fix up the old set for nominal price– he currently has 4 pairs — newest one and 3 rehabbed ones and never has to take them in/ out of his shoes.
Hi Heddy!
First off I”m so so glad to her you’re in remission. I now know what a huge thing that is to be able to say!
My doctor did warn me about the possible eye damage, I forgot to add that to my homework list, I’m supposed to have my eyes checked before starting the meds and then again in 6 months. At this point I think I’d take worsening vision if the pain went away but who knows, I guess I’ll cross that bridge when I come to it.
SO many people love Danskos! I’m going to head to Zappos now and do some shopping. (:
Thankyou!
Natasha, I hope you find comfort with your new assignments. It sounds like you have a good support group in your life. I wanted to make a suggestion for cute shoes that will do you right. Fit Flops. I have severe foot and heel pain and have been wearing Fit Flops for years. They are cute and they are the only shoes that relieve my pain (I tried crocks and they did not help). Check them out. Also, I’ve been seeing an acupuncturist for 6 months and I love it. She has helped with a few issues including pain, grief and anxiety among other health issues. I hope you can find relief and peace with acupuncture.
Thanks Shannon! I’m going to check them out right now, also I’ve gone to the acupuncturist twice so far & I’m excited about the possibilities, my skepticism has definitely worn off!
Hugs and prayers from PA.
God bless you Natasha. I am praying for you to be healed so that you can continue being the wonderful mother, wife, and friend that you are.
Natasha, I just wanted to say prayers will definitely be sent your way! I have followed your blog for a few years now and despite only having a son, I just love all of your crafts posts and recipes especially! My hubby and I make fish tacos and using your avocado creme recipe is a staple in our recipe book.
We are all pulling for you!
Hi Natasha. So sorry you’re going through all your health problems, I cannot really offer any good advice on that front but it sounds as though you’ve gotten some great advice from the other ladies.
I can tell you that most YMCAs have water exercise and Aqua Zumba is super fun.
I can also tell you that Dansko makes some great shoes, very supportive and many are even kind of cute. I wear their clogs on a regular basis, you can buy them on many websites and at The Walking Company among other places I am sure. Give ’em a try and good luck with everything.
I stumbled upon your blog. I too have many of the same issues. I have dealth with Rheumatoid Arthritis since the age of 29. I am now 45. Along the way, I have had fibromyalgia, my hormones affected from my autoimmune disease (menapause at 37), thyroid affected, dry eye and mouth and IBD. And now…Rhupus (overlap of RA and Lupus with photosensitivity. I battle pain and fatigue daily. I had to give up a law practice. The stress and uncertainty of day to day functionality made it all but impossible. I have had issues at work (even as a federal employee with lower responsibilities) and am now thinking about disability retirement. If I can control the stress, maybe I can slow this thing down.
I am a single mom and have had guilt about the things I can’t do…but I tell you, Motherhood has been the saving grace in all of this. My son is the reason I get up and keep going. When he was little, I would put him on my bed and we would read and play and he wouldn’t stray. He seemed to understand so much. When I couldn’t pick him up, he threw a tantrum once and only once and then he caught on. We he was 10, we read Harry Potter every night of the week until we finished the series (and as a reward I took him to Fla. to Harry Potter (even in my scooter)). We are closer than 99% of the mother/sons I know. I think the reason is I have loved him so dearly and he knows we NEED and LOVE each other. No amount of missed activities replaces that. He is my first priority and he knows it.
I broached the subject of me “retiring” and having to move because of my health and having less money. He was OK with it because he sees the struggle I have. I always try to be honest with him about what is going on (gauged to his age). I think that if a child’s needs are being met (happy and stable home environment), they can flourish and grow even with adversity and health issues from a parent. Guilt does not serve anyone well. Love your kids with as much energy as you have and it will be enough, even if you can’t go to every baseball game or dance lesson. They will understand – especially if you are loving them with every ounce of your being. And it sounds like you are. Good Luck
I’m so glad I read this today Tammy, right now the only thing keeping me motivated is Sam & Sophie. Thank for sharing, it’s a huge inspiration!
YOU.ARE.SO.STRONG.AND.BRAVE. I hope you know that. Sending, prayers, love and positive energy your way.
“Be still, and know that I am God.”
I’ve been reading your blog for a few years and never, ever comment! I am a serial lurker! I am so sorry to hear about you having to go through all this! How stressful and frustrating! It must at least feel good to finally have more of a direction of treatment and tangible things you can do to help, as well as fresh perspective from a new dr. I don’t know if you have ever heard of Young Living essential oils but I’ve recently started using them and have read dozens of amazing stories of how they are helping people with all kinds of things. Like, anything you could think of! (Allergies, pain, rashes, eczema, acne, the list just goes on and on). Anyway, it may not be something you’re interested in but I just read the other day a story of a woman with fibromyalgia who used some of the oils and cried happy tears when she was pain free for the first time in so long. So just having read that, and then to read this post just made me feel compelled to share that with you. I figure anything can help! And if its not for you, nothing lost! God bless and good for you for having a great perspective and holding on to faith!
So weird, I’m completely having a flare up right now too. Major fatigue and my knee is swollen, snapping and stiff and warm to the touch. My ankle is snapping and has sharp pains when I walk or move it suddenly. My left shoulder is also swollen and hurts really bad. I’ve been diagnosed with inflammatory arthritis, meaning I don’t have anything rheumatory going on with me so it doesn’t show up on my blood work. I also have always had low blood pressure but recently it’s been high so next appt. I have to tell my primary doc and they might have to put me on BP meds. 🙁 Stress is a major factor in my flares. I can pretty much time it that a week after my periods of high stress I will flare. My joints are very receptive to steroid when I have a flare. Good luck figuring out what’s wrong. I also have MS…
By the way, of all things, I take the antibiotic Minocycline to combat my flares. It seems to help most of the time, except when my stress level gets really high, then it seems like my defenses are down and it hits me.
Natasha,
So sorry to hear you are going through all of this!! I listen to your husband on the radio every morning and I always wonder how you are doing every time I hear his voice. I will keep praying for your health to improve so that you can do things with your kids that you are accustomed doing. I am a single working mom and I unfortunately don’t have the free time or anyone to help me to do stuff with my kids that are school related or otherwise and I feel very guilty so please you are doing a lot better than most of us so don’t beat yourself up about the nanny taking them! At least you have someone to help you and take it from me that is huge!!!
In terms of the water aerobics look into Lifetime Fitness here in MD; there is a location in Rockville and one in Columbia. They have water aerobic classes there and they have a great childcare center so the kids can be there while you are in class. Don’t worry about the older people in the class, I have been thinking about doing it and I am not “older” at all.
I hope this information helps and I will keep myself posted on your progress and you post it. Have a great day!!! 🙂
Have you considered gluten intolerance or celiac disease??
http://www.naturalnews.com/038170_gluten_sensitivity_symptoms_intolerance.html
yeah, I actually thought that might be it for awhile and even had a biopsy done to test for celiac’s and tried several weeks going gluten free but it didn’t seem to help. good thing too, that diet was really hard! thanks for the suggestion though (:
I’ve followed your blog from the beginning. I’m currently going through my own health disaster so I understand how frustrsting it can be. Im sorry you are going through so much. Thank you for sharing your journey with your readers because it is helping me to keep pressing for answers!
Where has this blog been hiding?! I like you have been going through a very similar situation the past year.. I’ve had all these weird things happening to me the past 2 years, saw drs that I would think would treat the “symptoms” that we’re going on, but every dr had the same “idk” answer. Every time I saw a dr, it was another I diagnosed problem. I then did my own research, and discovered the evil auto immune diagnoses! My general practice dr then saw the same concern and sent me to my first rheumatologist. The rheumatologist confirmed me having an auto immune disease, but like you it has failed to come with an actual name. I feel like a science project with all the different meds they are “trying” on me! It’s really good to know I’m not alone in this :/
I’m so glad you found me too! Us guinea pigs gotta stick together!
I too am diagnosed strongly with rhupus. The diagnosis of RA CAME FIRST with the plaquenil and methotrexate ( only to plunge my blood work and shut down my thyroid) I stopped the methotrexate. My rheumo md wasn’t happy. My neurologist I saw for headaches and new seizures at age 50 also was extremely interested when I mentioned I had severe ore eclampsia with my first Sat in hospital a month on mag sulfate awaiting that famous 36 week and 6 day amnio so a C. Section could be done the next day if lungs were mature. So , finally now all my blood work not only shows the 11 of 14 factors for RA ( I have 14 of 14) but the 4 needed for lupus ( I have 8) no I still am in bad flares, I do see pain management but I only go as far as a 5 mg Vicodin So we have a lot in common. The pool is a blessing, exercising as in walking or walking the treadmill is not. I will be asleep for 20 hours afterwards. It’s taken a toll on me but I’ve known since I was 17 something was wrong. But at age 18 I went to the same rheumo md I see now And I did not have the ” required” number if factors to dx RA. SO UNTIL I was 47 was when I was diagnosed. I’m a RN, ppl refer to me as the best mom they’ve ever seen, but I suffered quietly. Now I’m retired after 30 years and can take care of me. Good luck
Oh Jaime, I’m so so sorry. It sounds like you’re really suffering ): If you’re local and would like a different pain management doctor please let me know, I just started seeing a new one and he specializes in rheumatological & neurological conditions. I hope life gets a little easier for you soon, hang in there. Sending big hugs your way!