Autoimmune Disease

Dear Doctor,

Start 2014

“You have a parasite.” False.

“You need to get your gallbladder taken out!!!” False.

“You have bone cancer, Bailey.” False.

“You need to get your gallbladder taken out.False.

“You have mono and I’m referring you to a rheumatologist. I think you may have RA or Lupus.” True.

“You have primary Sjogrens Syndrome and secondary Fibromyalgia.” Maybe.

“I’m confused about what you have. Before we start treating you for autoimmune, which is what it sounds like to me, we are going to retest you for everything possible. It’s been a year since your last diagnosis.” Ok. I don’t have another choice but to wait.

“Your Vitamin D is extremely low. Almost nonexistent. We are calling in a prescription of Vitamin D for you in a concentrated form. Your other labs will be in – we’ll call you.” [Cue tears] I’m in so much pain. Somebody hear me! Somebody care! I know we will get there eventually, but I can’t wait anymore.. Do you want my pain? Please take it while we are “figuring it out” Mrs. Doctor lady.

Current 2016

How much longer should I be expected to wait? Do you know the testing I’ve done for all of this?

(Abdominal Xray, Physical Exam in Emergency Room, Xray comes back and result implies Bone Cancer, Papyda Scan at hospital – followed up with surgeon, bone scan -followed up with doctor, Care Express directed me to my first lead-rheumatology, Treated fibromyalgia (not autoimmune disorder) for about one year before running into current situation…. and here we are)

Dear Doctor,

I’m calling for help. Why don’t you hear me? I’m in such pain in my joints. More than I’ve ever been in my life. Do you know how petrified I am that my blood test will come back negative – for everything? Every other test I’ve been submitted to has been negative for 2 years. Do you know how many doctors I’ve seen for this issue? Same issue. Same issue, Doctor. Please help me. I cry everyday. I sit with a heating pad everyday. I can barely get up to get the medication that helps me. Why can’t you treat my pain WHILE we’re waiting? What have I done to deserve this pain, Doctor? Why is this happening to me? You can’t tell me WHAT is happening to me, at least tell me why. And when will this end? Doctor, please tell me soon. I’m at rock bottom. Of course I hit rock bottom frequently with my pain. My pain is causing me so much depression. I don’t want myself-how can my loving, and so helpful husband want me? I don’t want myself, Doctor. He is sticking with me and being so kind. What did I do to deserve such pain and such a  brightly sweet husband in the mean time? I know that God is telling me to listen, Doctor. I know He wants me to learn. But my frustration lies in the facts that this has gotten worse being untreated since day 1 in 2014, since the day I walked into my manager’s office bawling because I was hurting and HAD to go home. He asked me the award winning question, and it makes sense looking back, “Bailey, where are you hurting?” and my answer? “[Name], I don’t know. I don’t know. Everywhere.” Which lead to a long Leave of Absence from work. They were frustrated, but so was I. What was I supposed to do? I obviously am not hearing my Lord correctly. Am I being too passive doctor? Because when I try to take a stance, you assume that I did not hear you correctly. What do I do, Doctor, if this test comes back negative? There will be an answer to this. I know it won’t come back negative for everything. My joints hurt more than any hurt I’ve ever had (except kidney stones), every day, every morning, stiffness, swelling, pain upon more pain, all day, everyday. heating pad cycling between body parts – all day, everyday. But with my history of immense blood work taken and huge tests with huge machine and IVs, could you blame me Doctor? For being scared? I’ve hit stops through out this entire thing. I don’t want to hit stops anymore. I have nothing left to give. I can’t do this anymore. Doctor, did you know, when I go to Walmart, as a stay at home wife’s job is, I have to take my husband with me? Did you know that Doctor? Do you know why Doctor? Because I can’t push the cart. I can’t lift the cat litter or beer that my husband so desperately deserves after 13 hours on a night shift.Did you know, if we forget something, I can’t retrace my steps to get it? Did you know my husband has to and offers to go get it while I stay and wait for him? Did you know my husband gets mad when I pick up something that may be too heavy? Did you know he gets mad when I do something that he knows is too much for me when I’ve been struggling? Doctor, I don’t even want myself. I don’t want this pain. I don’t want this body. How is it so possible that this man wants and loves me more than anything in the world? Doctor did you know that when I wake up in the morning, I have to lay in bed for at least 30 minutes before my joints are “ok” enough not to break in half when I stand up? Did you know the next step to getting up is rolling to my side and letting the pain slowly dwindle down? Did you know the next step is sitting up and waiting? And then standing up and walking quickly to switch feet – which by the way kills my knees – because my feet ache to hold my body? Doctor I need an answer.

And I need an answer now.

I’m sorry Doctor. I can’t do this anymore. I can’t wait any longer for treatment and release, relief of this pain. It’s been 2 years too long. And this continues to intensify in pain, decrease my mobility, and decrease my will.

Doctor you know what helps my will? My husband. And my Lord. Because you are far from helping me so far. Help me Doctor. Because I can’t anymore.

 

Sincerely,

A Worn and Broken Warrior

 

“You must think I’m strong – to give me what I’m going through. Well, forgive me if I’m wrong, but this looks like more than I can do… on my own. Well maybe that’s the point? To reach the point of giving up. Because when I’m finally at rock bottom, that’s when I start looking up and reaching out. I know I’m not strong enough to be everything that I’m supposed to be; I give up. I’m not strong enough. Hands of mercy, won’t you cover me? Lord right now I’m asking you to be strong enough, for both of us. I’m broken; down to nothing; but I’m still holding on to the one thing: You are God, and You are strong when I am weak.

‘I can do all things through Christ who gives me strength.’

No, I don’t have to be

strong enough.”

-“Strong Enough” Matthew West

 

6 thoughts on “Dear Doctor,

  1. So sorry you haven’t figured out the cause of your pain yet. Mine too a long time too. I finally found out I have Lyme Disease. And, I’m lucky I found a good pain specialist to help me through the treatments. I was also told several times that I did not have Lyme. I wonder if you have it. Regular doctors are not educated about it and if you did a Lyme blood test through your regular doctor it’s probably a false negative. Mine was. And I was almost at the point of needing a wheelchair and had doctors telling me it was all in my head. If you haven’t seen a Lyme Literate MD I suggest you do. It’s the only way to rule out Lyme disease. Especially if your family has many auto-immune diseases. Lyme mimics over 300 diseases and doctors and anyone with an auto-immune diagnosis should be evaluated my a Lyme Literate MD.

    Liked by 1 person

    1. My cousin has Lyme and has told me the same thing. If this test comes back negative for everything, I may end up traveling to the nest town who can actually do a test for it. The doctors here don’t do the one that’s deep enough to tell. Thank you so much for your input. I’m seriously desperate at this point!!!! I’m glad they are redoing all tests, but if these show up negative I’m going to bawl. 2 years and too many doctors to count. So we will see. Thank you. I really do appreciate it! And Lyme is treatable correct?

      Like

  2. 😦 ((gentle hugs))
    I was going to suggest seeing a different doctor but I think you mentioned in this that you already have seen so many doctors. I got tears in my eyes while reading this. Thankfully, I got diagnosed right away but I know most people don’t. I wish I could suggest something to you but I don’t know what… 😦 And why hasn’t your doctor tried sending you to a bigger institute to be checked out? Or maybe you are already seeing a doctor in a larger institute…Bless you husband. What a terrific man! I don’t pray very often, but will send a prayer for you tonight. Sending spoons your way…

    Jenny

    Liked by 1 person

    1. Jenny,
      You’re so precious. Thank you so much for your comment. It really means the world to me to have one more supporter out there. You can never have enough!
      The next biggest institution would be in Dallas, TX. I’m about 6 hours away and I’m thankful that my doctor is looking deeper right now. I’m just frustrated that they won’t treat me for pain while they’re “figuring it out”. I guess they did give me a non-addictive pain medicine, but only Advil (from what I have) works on inflammation. There are so many autoimmune diseases in my family. They’re looking. I was just so angry today! I cried so many times from even just having to move. I have a group of 4 of the best doctors working together. It’s just frustrating that it’s taking so long,everything is intensifying, and they just act like they don’t know how long I’ve been going through this. But thank you to the ends of the world!!! I hope you’re doing well in your life!!

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s