We Are On Our Own

I’m so down today. I don’t talk about this problem much because it bothers me too badly, but I just need to vent for the moment.

My 10yr old daughter has been having a chronic health issue and we keep going to different doctors, and they keep running the same tests and they’ll have us try a few different things and a few new meds and there’s never any relief so nothing is working.

Had to go back to the doctor today because my daughter is suffering and they’re FINALLY referring us to a specialist. YAY!!!! I thought this would be our light at the end of the tunnel and we’ll start getting some answers!!!

…but the specialist doesn’t have any availability until December. Seriously?! So my daughter has to suffer for another month now. After suffering for months already.

I’m so discouraged. At this point, I feel like I should trial-and-error treatments for her MYSELF, using the Internet. I’m losing faith in doctors. They haven’t been helping. All they’ve been doing is booking appointments and taking my $$$, and my daughter hasn’t improved at all.

As a separate issue, but happening in parallel to this which is making my aggravation so much worse, is a foot injury she received during soccer. She’s been in a cast as well as several walking boots since January. She’s been in physical therapy (2-3 times a week) since July. And guess what folks, she’s STILL in pain! It’ll be almost a YEAR now of PAIN!

She’s had to quit soccer and gymnastics and hasn’t participated in school P.E. since. She’s being left-out of a birthday party this weekend because it’s for the girls on her soccer team only. My once highly-competitive athletic girl is deteriorating physically and socially.

She’s seen 3 different specialists for her foot and nothing they’re doing is working! They just keep booking the dr appts, and the physical therapy appts, and taking my $$$, and my daughter hasn’t improved at all!!!

Like, I can’t keep doing this. I’m basically throwing my money and my time away. It would all be worth it (1000-fold) if I noticed my daughter improve at all. But there has been NO IMPROVEMENT. I’m done. Where can I take her for REAL help?! At this point, I’ll try a witch-doctor or voodoo priestess or shaman, ANYTHING else.

I have no hope anymore. Nobody is out there that can help us. We’re on our own.

And to compound this belief for me, is my own issues with a chronic headache that I’ve blogged about before. I’ve actually quit going to doctors because they’ve never helped me with any relief anyway. They just run expensive tests on me and never give me any helpful remedies. So, I’ve already given up when it comes to myself.

I’m devastated about giving-up when it comes to my daughter.

22 Replies to “We Are On Our Own”

  1. Good on you for advocating for your daughter!! I can tell that you are a great mom!! My daughter has a disability and nobody had the time of day to assess her. We ended up taking her to the ER to check her eyes, and only then they were able to confirm what we suspected. It took a year to see an eye specialist and another 2 years to see a genetic counselor. Now I’m on the wait list to see my daughter’s eye specialist. Our son was added to the list because my daughter was already on the list. They SHOULD be able to add your daughter to the list too… I read your previous blog post and I’m baffled as to why they didn’t add her or fix their mistake. You did everything you could to make it right mama. I’m sorry that she’s suffering and I can emphasize with how hard it is to watch on the sidelines as a parent.

    1. Oh gosh Hilary! Hearing that it took a YEAR and then 2 YEARS to see your specialist and counselor really freaks me out. It just seems so unacceptable to have such long wait times! I don’t understand how that can be ok for anyone, especially kids. It sounds like you’re doing awesome as a mom and I hope your daughter and son are doing well. 🙂

  2. Know what it’s like feeling like with years of medical training behind them, Doctors seem to just be trial and error testing things on us based on what big Pharma companies tell them to try and what Ins companies will approve. We’ve been looking into wholistic help and more old school books and internet research for various health issues. Praying for you and yours. Hang in there.

    1. Yes, I’m starting to do my own research now. It’s better than doing nothing and continuing to wait on others to come up with answers when they haven’t yet. I’m starting to agree more and more everyday with your statement that doctors might be more aligned with Big Pharma and Insurance than they are with their patients. 🙁

  3. Praying for you and your daughter, Pepper. I’m so sorry you’re dealing with this! I’m already looking forward to reading the blog posts where you victoriously share about finding valid diagnosis and treatments for both you and your daughter. They’re bound to be coming. It’s always darkest before the dawn! ❤

  4. I’m so sorry you’re going through this!! This sounds terribly deflating to your spirit! 🙁 I know you feel like giving up but I would keep going until I found something so listened. Ask trusted friends and family for recommendations for a good doctor? Any connections to doctors in your family? It’s also probably difficult now too what with the pandemic taking precedence… Ackk I’m so sorry.. Thinking about you and your daughter! ❤️❤️🙏

    1. Thank you Bosssybabe. I was really discouraged yesterday so I had to vent. Today I’m feeling motivated to figure this out by myself! To heck with waiting on others to solve my problems! 🙂

  5. I’m really sorry for your daughter. It’s utterly miserable, isn’t it? I don’t have a kid, but I’ve been through not knowing what’s wrong and nobody doing anything. My mum’s had another health issue this year and I’ve taken her to different doctors… 7 months later and she’s still suffering, nobody has a clue what’s wrong, and I’ve just called yesterday for an appointment (but not with one of the dickheads she’s already seen) which won’t be until December either. I wanted to scream. It makes you feel helpless, but you’re doing all you can. I really, really do hope the specialist has some ideas.

    I’m always around if you want to chat. I’m happy to investigate a little if you want to tell me what’s happening, see if we can find any ideas before her appointment. It’s stupid that patients often have to figure out what tests or treatments are needed because those paid to do it don’t or can’t do it.

    As for her foot, that’s just awful. Surely it shouldn’t be like that after 11 months. Is it a bone issue? Did she have scans?

    Don’t give up hope. As frustrating and awful as it is, there has to be more than can be done that will get her issues moving in the right direction. There has to be. xxxx

    1. Oh Caz, that’s so terrible about what your mom is going through and I hope she gets some answers soon. That sounds so similar to what I’m going-through with my daughter. Like, I just need to find a doctor that will make my daughter a priority so they can figure it out. Seeing her occasionally and sporadically isn’t solving anything. I need someone ON TOP OF IT EVERYDAY like this is a fire to put out. Why don’t doctors work that way? If they add-up all the time ineffectively seeing her because it’s so spread out, it SHOULD be less time and effort just to rally around her and give it their full attention until it’s remedied. The system isn’t working, the way it’s set-up now. Surely, that’s obvious for everyone to see. I’m sorry your mom is going through this too and I hope she gets some relief soon. 🙁

      Yes, her foot has been scanned and she has an extra bone in there somewhere. Normally, it would never cause a problem for her whole entire life, except the extra bone got injured during soccer, and since it’s not supposed to be there anyway, it’s not healing properly. Surgery is an option, but it’s the last resort because there’s a tendon involved and her foot isn’t done growing yet so the doctors are discouraging the surgery until she’s closer to 16 years old. But that’s still 6 years away and I can’t have my KID (like, she’s still my BABY) unable to run around and play with all her friends throughout the prime time of her childhood!

      Sorry I’m venting again. I guess it’s still upsetting me. I truly appreciate you being so supportive to me. 🙂

  6. I’m sorry to read this, but I don’t suppose I’m entirely surprised. My own experiences with doctors have been hit or miss– when you can get in to see them. The birthday party situation is troubling, it screams mean girls. If she was on the team initially and got hurt playing soccer, why not include her now?

    1. Thank you Ally Bean. I’m so sorry you’ve been experiencing hit-or-miss with your doctors too, but that seems to be the norm unfortunately. Especially as you mentioned WHEN you can get in to see them – ain’t that the truth! Well, the birthday party ended-up being yesterday, and my daughter was too sick to go anyway so I’m sure she forgot all about it, so it’s ok.

  7. Oh, Pepper! I’m so sorry your daughter is in so such pain and is being left out of parties just because she can’t play soccer. You’d think they’d make an exception for her because she did play once upon a time. And it’s sadly true that medical expenses can get so expensive. 😥

    But I commend you for continuing to advocate for your baby’s health. Like you, I don’t look at doctors and the medical profession like I used to because these last 2 years have proved that it’s mostly a money racket. Know that my heart goes out to you, honey. It’s bad enough when you suffer and can’t find decent help but when your child suffers, it’s unbearable to watch them hurt and not be afforded adequate treatment. 💔 Bless you both, Pepper. You’re in my thoughts and prayers. ❤ 🙏

    1. Thank you so much for your thoughts and prayers, Cherie! I appreciate you so much. I’m starting to believe more and more what you said about the medical industry being more like a money racket, especially with all my recent experiences. I do believe that not ALL doctors are like that, I’m just having difficulty finding those rare exceptions… 🙁

  8. Awful. The last time I went to the doctor, he was so kind that I started to cry. So…he prescribed an anti-depressant. Of course, if you have a new female patient in her mid-40s, shouldn’t discussing peri-menopause (especially if she is emotional) be part of the conversation? I really wish I could find a doctor who didn’t play psychiatrist.

    1. Oh no! I hope you get the right treatment for you soon! And I hope you find the right doctor too. I don’t have a primary care doctor for myself because I haven’t yet been to one that seems to “get it”. They tend to just prescribe me pills for everything and I’d rather not except for very finite purposes. I don’t like the open-ended-ness of most of these prescriptions if that makes any sense.

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