There’s Hope In Front Of Me

Does everyone with a chronic illness feel like they’re drowning in medical appointments or is it just me?

Lately, it feels as if they’re never-ending…

Take this last week, for example – I had 6 medical appointments. The week before, I had 6 appointments as well. This upcoming week, I have 5 scheduled. I originally had 7 but I was released from physical therapy on Friday (long story, which I’ll update at another time). All  of April was pretty much the same thing and the rest of May isn’t looking that much better. Honestly, I’m so exhausted from trying to manage all of these appointments and there is barely  time to think, let alone do, much of anything else (e.g. school work). It feels like I’m never going to get a break at this point – and it’s really not helping my symptoms either. The only good part is that we’re finally starting to make some progress.

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I have a few new diagnoses and some possible new treatment options to look forward to, including the possibility of a few surgeries. Although I was skeptical at first, 2016 does seem to be my year after all – it just got off to a slow start I guess. If nothing else, all of this forward motion has given me hope once again.

Hope In Front Of Me

By Danny Gokey

I’ve been running through rain
That I thought would never end
Trying to make it on faith
In a struggle against the wind
I’ve seen the dark and the broken places
But I know in my soul
No matter how bad it gets
I’ll be alright
There’s hope in front of me
There’s a light, I still see it
There’s a hand still holding me
Even when I don’t believe it
I might be down but I’m not dead
There’s better days still up ahead
Even after all I’ve seen
There’s hope in front of me
There’s a place at the end of the storm
You finally find
Where the hurt and the tears and the pain
All fall behind
You open up your eyes and up ahead
There’s a big sun shining
Right then and there you realize
You’ll be alright
There’s hope in front of me
There’s a light, I still see it
There’s a hand still holding me
Even when I don’t believe it
I might be down but I’m not dead
There’s better days still up ahead
Even after all I’ve seen
There’s hope in front of me
There’s a hope still burning
I can feel it rising through the night
And my world’s still turning
I can feel your love here by my side
You’re my hope
You’re the light, I still see it
Your hands are holding me
Even when I don’t believe it
I’ve got to believe
I still have hope
You are my hope

10 thoughts on “There’s Hope In Front Of Me

  1. Elizabeth B. says:

    I hate the chunks of time where it’s nonstop appointments. Sometimes, when I get overwhelmed, it feels good to scroll to a month where I haven’t started scheduling and just look at the beautifully empty calendar (I use Google calendar, hence “scroll”).
    Hopefully, all the craziness leads to great things!

    Liked by 1 person

  2. Jean Reinhardt says:

    My youngest who is 18 years old has had no life for the past year and couldn’t finish school because of chronic illness. After being in and out of A&E four times in as many months and numerous doctor’s appointments she was given a drug for IBS and told to eat more roughage.. She’s now on a low dose Beta Blocker and waiting to see a cardiologist in August. Fed up with getting nowhere the conventional route we brought her to see a nutritional therapist who also uses Bio Resonance (Kinesiology) and Homeopathy. For the first time in a year we feel we’re getting somewhere. Stool samples show yeast infections and a complete diet change has has a good effect already, and the constant pain is no longer there. Not sure if any of this is useful to you but I wanted to mention it because my daughter has had such good results, so far. She still has a long way to go but it’s looking hopeful. I’m glad that you seem to be getting somewhere, too.

    Liked by 1 person

    • The Undiagnosed Warrior says:

      Thank you. I’m planning to post about it, but I’m officially malnourished. That’s a recent finding. Starting with a nutritionist tomorrow. Have they done a hydrogen/methane breath test for your daughter? I was diagnosed with SIBO last fall and it’s a pain to treat, but quite common with IBS and a lot of GI related issues. Mine is likely from the SMA Syndrome. Hope your daughter has good luck with all her appointments. It’s a crazy life. Everyone just assumes your in bed all day if you’re sick… nope, we’re running from appointment to appointment. Hurry and wait lol

      Liked by 1 person

      • Jean Reinhardt says:

        My daughter lost a stone over a few months and she was only 8 stone to begin with. She’s lost another couple of pounds this fortnight but that’s probably due to detoxing and change of diet. She didn’t have a breath test but the stool one was very detailed and the next one she’ll have will be a specialized urine test that will tell how she is coping with diet etc. I hope the nutritionist can help you out, as ours has done. Fingers crossed for you.

        Liked by 1 person

  3. crazyphatmommy says:

    I have been off on Disabilty for over two years and I joke that I’m more busy now then when I worked two jobs. A lot of medical appointments and travel to medical appointments as well as massage therapy and Physiotherapy take up a fair chunk of time. I also dove head first into my fitness program which has helped immensely over the last 10 months. I hope you get some answers some. Nutrition was key for me, it made a world of difference.

    Liked by 1 person

    • The Undiagnosed Warrior says:

      It’s so true. I’d so much rather be healthy and at work – and less busy. Sadly, I think most people just assume that if your sick you spend your days in bed watching daytime tv, which couldn’t be farther from the truth.
      I’m glad to hear nutrition helped you as well. I had my guest appointment today and I really like my nutritionist. Got a lot of good ideas that may help. The only bad part is that it’s not covered under insurance. I need to look into fighting it because it’s considered medical necessity.

      Liked by 1 person

  4. giftbearer says:

    It’s good to hear that you’re getting some answers as to what’s wrong! I know the feeling regarding having a full schedule of doctor’s appointments. Most of mine recently have not yielded much meaningful information but I have two out of town appointments set up which I hope will be better and more “outside the box” than the local doctors I’ve been seeing.

    I have a breath test coming up also. I had to reschedule it for a few more weeks away because of a urinary tract infection for which I’ve had to be on antibiotics. My whole GI tract has been very unpredictable and in an uproar for several months and I’ve lost alot of weight. This local Gastroenterologist I’m seeing is overbooked so my next appointment with her isn’t until September, but I have an appointment with her Nurse Practitioner in the meantime so hopefully they will be able to continue the testing process and give me the results before I see the doctor again.

    Ironically, I finished physical therapy on Friday too. That I think was just marking time so that the mobile doctor had grounds to order home healthcare, but isn’t stopping the inevitable, as my movement disorder is still as active as ever. Trying to stand at the bathroom counter and lift up on my toes nearly throws me off my feet backwards and I am wracked with involuntary jerking in my torso. I hope the movement disorder specialist I’m scheduled with in July will be able to find out what this is.

    Please do an update on exactly what they found with you and your testing process. I think this might help others in their search.

    I was wondering if you’ve noticed any hair loss. I have been losing alot of hair over the past two months and it occurred to me this could be due to either a nutritional deficiency or possibly hormonal/endocrine problem.

    Liked by 1 person

    • The Undiagnosed Warrior says:

      Wow. Sounds like you have a lot going on too. As for hair loss, I’ve lost a large patch on one side, but it seems to be thinning pretty much everywhere. I recently had nutritional panels done that confirmed I have medical malnutrition, so that’s likely why but it’s weird that it is concentrated to one side. Once I get done with midterms, I’ll post up the crazy rounds of testing I just had again. I’ve been waiting until I had enough energy to get through it lol. Hopefully going out of town will get you some definitive answers!

      Like

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