Have you ever opened your eyes in the morning & already, before you even get out of bed, you already feel beat down & broken?
This was one of those mornings. Everything hurt. I spent the night rolling over from one hip to the next because after a few hours something in my body tightens up & the feeling of being stuck in a tin can wakes me. After a night like that you wake up already tired. Sometimes, like today, I know as soon as that one foot falls out of bed & hits the floor that it’s not going to get better. It’s going to be a hard day.
Yesterday afternoon I was truly on a high of hope that this could all turn out ok. In fact, I called my pain management doctor and begged him to put me on a new regime that would get me off of all the pain medications. If my problems were muscular than in theory a muscle relaxer should bring relief & make pain medication completely unnecessary. He agreed & called one in to the CVS down the road so I could start right away & I was SO EXCITED. I was so sure it would work. As I write this in hindsight I’m shaking my head because I should have known better. I should have known there is no magic pill that all of a sudden is going to help me sleep like a baby & & feel the peaceful relief that I so desperately want. However like many times before by bedtime I found myself in a brutal flare & went to bed nauseous, groggy, in pain & sad. BUT before I went to sleep, in a desperate state, I reached for my phone & read my ‘Jesus Calling’ for the day,
“Much, much stress results from your wanting to make things happen before their times come. One f the main ways I assert my sovereignty is in the timing of events. If you want to stay close to Me & do things My way, ask Me to show you the path forward moment by moment. Instead of dashing headlong toward your goal, let Me set the pace. Slow down, & the enjoy the journey in My Presence.”
How quick I am to get a little glimmer of a way out & just take the ball & freakin’ run with it. I had it all planned. I made the calls…I called my Doctors, told my loved ones….this was it! I forced it. I made it happen before it was time. I get that now.
After my feet hit the floor this morning & it became clear a bad day was here I foud a little silver lining in the fact that today was the day, my appointment with the rheumotoligist. My “gold star appointment” as my Mayo primary doctor had called it. Maybe I could dare to hope one more time that he/she would have an answer. One I couldn’t see coming. One it was time for.
I got dressed & as I made my way down to the hotel lobby for some coffee I remembered something, I hadn’t yet checked my patient portal. (Mayo has a fancy system where you can check your online account for appointment times, doctor’s notes & lab results) I opened it up & found that the lab results my primary doctor had ordered at the beginning of the week were in…
Wouldn’t you know it, they were pretty much all normal.
I lost it.
I started thinking about all of the sacrifices everyone had/is making for me to be here. My mother who’s keeping my children, my Father who’s utterly selflessly gone with me to every appointment…I don’t know how he’s getting his regular work done when he’s spent the entire day, every day with me, but he never shows it. He always smiles & thanks me for asking him to come. My sweet stepmother who’s without a husband this week so he can be with me, P’s co-workers & bosses who have truly juggled everything so he could do his show from Jacksonville…all of these people were giving so much so I could get answers. After looking at these labs I was hit smack in the face with the very real reality that I might not get ANSWERS.
So I did what I often do when I’m completely overwhelmed with my feelings. I sat down to talk to you. I opened my laptop to write this, to tell you I’m broken, scared & dreading this appointment because after reading those labs I have no more hope.
And you know what? Right then something happened, something that actually happens a lot when I sit down to write. I realized my mistake…
HOPE.
Hope was my mistake. Hope is fragile. Hope can be built up on a dime & dashed by a fluke.
TRUST.
To truly trust that God is leading me through this, that’s my way out, it can’t be changed by labs, tests or the best specialists. It is a firm foundation.
If I can just do that, maybe this will still turn out ok. Then again maybe my idea of “ok” isn’t the plan, maybe another outcome is. I guess that’s why it’s called “trust”.
Appointment is in twelve minutes. Gotta run my friend…
While my history and issues are different, I know what it’s like to have very real symptoms and yet no answers whatsoever as to the root cause. It wears so much on a person’s heart and soul. It makes you feel crazy, like you’re creating it for attention or self serving purposes. I know that isn’t true and so do your other readers. Trust in God. It may not seem clear now, but hopefully it will one day. And even if you never get the clarity of why, I do believe you will get the clarity of how moving forward this has a purpose.
Thanks Allison, that is exactly how I feel after so many dr appointments that result in zero answers. Very eloquently said, and thank you for sharing because it really is a comfort knowing others have felt the same way. (:
I believe you will find out, you will in HIS timing. And when you do everything will work out fine and you will then recouperate and believe. Praying for you! Xo
You’re amazing for sharing your story through all of this! Praying for answers and healing for you! Keep trusting Him. <3
Hi Natasha,
I am a physical therapist and reading your story just breaks my heart. I live in the Baltimore/DC area and know 2 PTs who might be able to help you tremendously. One is a womens health PT who deals with people just like you who suffer from pelvic pain and womens health issues. The other PT is my role model and the whole reason why I got into PT, she is a miracle worker with her hand, heart and mind. She looks at the whole body and is able to usually find the true root of the problem. She has been a big help to my sister who also suffers from fibromyalgia and other health issues like you. Please let me know if I can be of help and know that you should never give up. Keeping you in my thoughts and wishing you some peace of mind.
Carly
I don’t have much to say that you probably haven’t already heard, so just know I have your name on my prayer list and remember that you’re not alone. You’re allowed to have your breakdowns and tears and when it’s over, you keep going. I had my breakdown today as I’m waiting to get some answers too and I go into straight up ugly cry so take some solace in the fact that you probably didn’t look as hideous as I did… 😉 Sending you lots of prayers and hugs!
I have been through something eerily similar to what you are going through. My symptoms were similar also and every day felt like I was wearing a dead man around my neck; weighing me down and making every move difficult. I went to every specialist out there and no one could give me any answers- just a lot of “maybe it’s this disease” or “it’s fibromyalgia”.. Sadly I got a lot of “it’s all in your head”. A few years back, I was at an appointment lying on the exam table ready for a spinal tap when I broke down. I refused to let the doctor touch me and left the office in tears. It was then I realized that I didn’t really need answers; I just wanted to have a definition. I needed to be able to put a name to the nastiness that wreaked havoc inside of my body. Having a name for it and an exact plan of how to fight it would give me a sense of control and that is what I was truly seeking. I know it is really hard to feel so helpless and to feel out of touch with your own body. I hope you get your answers but if you don’t just know that no matter what this whole process is making you a stronger person. I came out of my sickness a better person and even though whatever illness my body suffers from is still there, I am now almost completely symptom free. More importantly, I am stronger and much more aware of my body than ever before. God never burdens us beyond our capacity , it is just up to us to find the light at the end of our very dark tunnel and to find the quickest way out. You will get there- I know it 🙂 you are always in my prayers.
Guess what?!? I was back at Mayo today too. Unexpected neck CT…not fun! I’m so sorry that you’ve had a rough day. Answers aren’t always so obvious, but TRUST that you are doing g the right thing by being here.
Now that I know you are in Jax, if you are still here, 2 places you MUST check out (if you can eat regular food) 1. Maple Street Biscuit Company and 2. Tacolu. So yummy!! (And Tacolu is in a haunted building!).
Praying you last appointments yielded something productive.
Just keep putting one foot in front of the other, honey. This is not in your head and you are truly blessed to have a supportive family and your precious babies. Players going up!
I just want to give you a big ol’ hug and tell you that it’ll all be fine and that you’ll get all the answers you’re looking for … But unfortunately I cannot promise that … What I can be sure of is that God IS looking out for you and you are in the right place. I can also be sure that you and your family are in the thoughts and prayers of all of us LPM readers and we all have faith that you will pull through this. Sending you much love <3
Nat,
Even though I’ve never met you, I feel like I know you, thanks to Kane (P) and your blog. I just wanted to tell you that you have lots of people praying for you and your doctors. I can’t imagine what you’ve been going through but you’re tough. You and God have got this. Put all your trust in HIM. You have such a great support system in your family and your internet family. Continue to lean on that system. I truly hope that your doctors at the Mayo Clinic give you the answers that you’ve so desperately been looking for. You certainly deserve it. Keep your chin up, buttercup! 🙂 XoXo
Praying for you and your family at this time. Keep faith and know you are blessed to have an amazing support system who love you very very much!!
I read all the time and rarely comment, so thank you for being so open with all of this and so honest to your readers. I’m thankful for your strength, it shows every time you share about your health. And I want to ask you to please hold on to hope – you say hope is fragile, that’s true but I heard it said “When fear says it won’t work, hope says it’s possible.” I believe it’s possible for you to not only feel better but to get better.
I am so sorry you are still struggling, but I wanted to let you know that I am praying for you and that your post also touched the problems I have been facing in my life, especially the scripture. I am 33 weeks pregnant with twins and have been living in a state of constant pain and sleep deprivation since 20 weeks due to SPD, aka evil crotch pain, the only cure being to give birth. At least I know there is an end in sight, but caring for my children and running my home daycare for another 5+ weeks in this pain seems impossible. On top of that I am irrationally terrified of the real possibility of needing a c section with this birth. It all depends on the position of baby A, who has been breech. I had an ultrasound on monday, thinking that the baby had turned and I could let my worries go but he was still breech. Hopes were dashed, despair crashed in, terror returned. I need to trust and let it go, knowing that that whatever happens I am in His hands and things will be alright. Again, hugs, and prayers, and thanks!
Stay strong, and just try not to defeat yourself, become defeatist, however you want to think of it. Sending love and support!
This made me well up with tears since I can completely understand where your coming from. It comes to a point where you WANT abnormal, unusual test results so at least there’s a sign, indication or speck of hope the doctors can figure out whats wrong. THAT is normal. You cling on to hope because right now, that’s all you have. Don’t give up hoping though, when you give up – doctor’s will give up. YOU know that something is wrong, and as inconvenient as it may be, you need to demand the next step of action.
The silver lining in this is your incredible family, and P’s job. While all of this definitely sucks (understatement) at least you have family to help you – both physically and emotionally. Keeping you and your family in my prayers <3
Hang in there!!! You are in the best place to get care and there’s till more to go. The doctors will come up with something. 🙂
This might seem like the worst advice ever but if I were you I would just go in to that appointment and cry to the doctor. You’re a person and he/she is a person, and the reality is that your emotional state is affecting your overall health in a very real way. I honestly think you should go to that appointment and get it all out of your system. Mayo Clinic employees have seen it before, and they’re probably the best people to cry to! Besides, it will likely get your doctors more invested in you personally, which could yield better results.
“You’ll be dancing again and the pain will end”.. chiquitita by ABBA was playing as I read this. I found it fitting. Hope will keep you focused and will fuel your fight. There is a plan for you. Now may not be the time for it to be put into play. Good luck and good faith!
I just want to say that no matter what happens, yours was not a wasted trip. Even if you don’t get a firm diagnosis, you are finding out more things that will enable you to figure out how to cope with what’s going on, which is to me the most important thing. I stayed in the hospital for a week one time early on with all of my symptoms and during that visit I was told that I had nothing neurologically or rheumatologically wrong with me (kind of funny now that I have since been diagnosed with MS and a rare kind of arthritis) but during that visit, I was in excruciating pain that mimicked Gout. They were able to rule out Gout during that time in the hospital and I also figured out that a Morphine drip wouldn’t cut my pain and steroid is a dream drug for my conditions. That was not wasted time. I was worn out, poked, prodded and tested out but I learned a lot to help me cope with the pain and fatigue of what I was going through. I know now that when I have a terrible spell (I am right now) that I can take steroid and get better. What a relief to find out there is a remedy for what I go through. You will figure out what works for you and being pro-active is terrific. I also have Fibromyalgia and my doctor told me that auto-immune disease and Fibro seem to correlate so keep that in mind. She also told me that most of her patients have to wait years to figure out what kind of auto-immune disease they have because the symptoms for some reason are masked and eventually come out over the years. I’ve been stopping by every day to check on your updates so know that even people that haven’t met you are hoping and praying for you. Stay strong.
Best of luck Natasha – the first step is getting out of bed, baby steps always. Take it easy! -Iva
Thank you for the post Natasha. Please keep us posted. I am going to try and read back a bit to see what your symptoms are but I thought I would throw something out at you, even if I am completely wrong, at least you know about it. A guy I know has had severe pain for years. Many hospital visits, many doctors visits and no one could figure out what was wrong. They finally found a diagnosis and it was called Acute Intermittent Porphyria. Again not sure if you have related symptoms but I figured it was worth throwing out there. Good luck and please keep us informed. I hope you get some answers soon
Thank you so much Christina, I’ve never heard of that but I sure am going to google it now!
‘You are where you’re meant to be.’ My mom used to say that when I was younger and I always found it annoying. But now I truly believe it rings with truth! I think about all the mysteries of life and it is almost always too hard to make sense out of.
Trust yourself, the doctors, God, everyone. You are a parent yourself, your mom & dad want to help because they love you and well, you should let them help you! (without feeling so guilty – I have a hard time w/this as well)
You’re worth it. You are trying to get answers —which will help you be the best person, wife & mom you can be. Good luck!! You are where you’re meant to be!! I hope you can find answers.
Hi Natasha,
I am 32 years old and I have pain similar to yours. I work with an amazing pain management doctor in Towson, MD. I have degenerative arthritis in my spine and constant pain. Have the doctors ever put you on Topomax? It is an anti-seizure medicine but pain management doctors use it for muscle spasms and shooting pain. It helped relieve so much pain for me and it was not a narcotic. Hang in there!!
Karen
Thank you Karen! I just emailed you… (:
I am trying to quickly read up on all/any posts you write about your health issues. My sister follows your blog and while updating (…complaining to) her about my own issues; she stop and said “I think that’s what she has!” then proceeded to tell me about you.
This post is quick and short as you may have already been tested; here is more info: http://www.spondylitis.org/about/as.aspx. The test for it is a blood test looking for HLA-B27 levels.
I hope this helps and I pray you find answers and healing!
Hi Natasha,
When I was 14 I had the same symptoms- major fatigue, headaches, muscle and bone pain, rashes, extreme abdominal pain, small ulcers in my nose/mouth, I also had no appetite, and was nauseous most of the time. I spent almost a year in doctors offices and hospitals. SO frustrating! Finally, they came to a conclusion that it was an auto immune disease called “auto immune hepatitis.” **Not the same hepatitis you get from drugs, or sex** The longer you wait to treat it, the worse the symptoms get. There is also a correlation if you had mono as a child, that you are at a higher risk for developing AIH.
I hope this helps! I understand how hard it is to be sick with no answer in sight. I’m keeping you in my thoughts, and hope you are better soon! 🙂
Laura
Natasha – So sorry to hear about all of the pain you are going through. My mother has sarcoidosis, which is also an autoimmune disease that is difficult to diagnose. Reading everything you are dealing with really resonated with me. Everyone goes through these things differently but then there is so much that is the same, you know? All we can do is take it a day at a time, but you seem to have found a helpful outlet in your blogging – more power to you!
Anyway, just wanted to give you a tip. I read that you mentioned that a doctor told you he thought you had a B12 deficiency basically to get you out of his hair. We’ve been through things like that so many times, it is frustrating! What helps (especially if you are at the hospital or a doctor you infrequently visit) me is to request copies of her discharge notes and admission and discharge lab results. It’s our health, sometimes we have to trust but verify! 🙂 Any time you see new specialists you’ll have that much more information on hand as well (I know doctors office ususally send your files over, but things happen I’m sure I don’t have to tell you). Take care.
That is SUCH good advice and I’m def going to do that from now on (as I’m sure there will be hospital visits at some point)
You know what’s interesting also about your comment, I noticed on my neurologist’s notes that she sent to rheumotogist was she wanted me tested for sarcoid. Guess that could still be on the table!
Thank you so much for taking the time share, you don’t know how much it means to me! I hope your mom is hanging in there too, sending hugs for you both!!
You should take a look at Lauren’s blog, Empowered Sustenance. She is recovering from Chrohn’s disease by overhauling her diet and lifestyle. Neither change is easy, but feeling bad every day isn’t easy either. I have seen the difference a healthy diet can make in my sister who won the fight over two types of cancer last year. Our diet is more influential than we let ourselves believe. My sister also purchased a crystal healing mat of some kind that she believes has helped. Additionally, look into amber jewelry. I have been wearing it for a couple of months now and have seen improvement in how I feel. Hope you find health and wellness very soon. Please email me if you would like info about the mat. I’ll have to check for the source.
Thanks for all the tips Carrie! I will def go look at her blog & I’m so sorry your sister has had to battle cancer not once but twice! She must be such an amazingly strong person!
Thanks again, lots of hugs for you & your sis!