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MeganMN

Hit the Wall

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Ugh. I am at a serious low spot in this journey. Thought I was there already, but so much worse.  Things have just gotten so messy with all of this medical testing and appointments and kids and marriage and work and LIFE! Going down to the U of MN to see a neuroendocrinologist in two weeks. Feeling worn out and jaded, hoping for answers, but tired of just getting more questions. My adrenal function is in question, my parathyroid function is in question, and I am TIRED.  That is really the crux of it all. I am totally losing the ability to function.  It feels scary. So much about all of this is scary, for so many of us. We are all at different places in the grieving process and right now I am low.  If I had some Energy, that would help!  

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Is there any way you can go on short term disability until you can sort this out and get in a better place? I know what you mean. I lost a job during this phase of my life.

Hang in there. It gets better.

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I agree with Kim.  I was self employed and tried to battle through, once I took three months off and had energy to take care of me I saw some improvements . I personally found the pressure of not feeling up to working and pushing through made me mentally drained and had a knock on effect of making my symptons worse.

Be kind to yourself, take time for you we do tend to prioritise others in the family first but if we push ourselves too hard we are no good to anyone a hard lesson I have learnt.

We had a marking system in our house relating to how  bad I felt that day, 10 don't expect even an answer totally dysfunctional , 5 I may get a few chores done and I do have the energy for a conversation. My husband suggested it as I wouldn't admit how bad I felt and I was very over sensitive so got upset thinking he was critasizing  me when he wasn't ! This also helped me to stop feeling guilty. 

Best wishes x

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thanks for the replies! My husband and I are trying to figure out what to do. I am beginning to get concerned because my fatigue and brain fogginess is definitely affecting my job. But I am the only one working right now and my husband cannot make more than maybe 25% of what I make as a nurse. On top of that, my job does not offer any short or long term disability! Right now though, I feel like I may be in danger of getting super sick. So, we are trying to come up with a plan. Just feeling like my mental state has taken a huge dive with all of this. I am so tired. Everything that I usually maintain is falling apart.  

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@MeganMN - as others have mentioned: this is to be expected and most of us have been there. You have tried so hard to compensate, overcome and push through that now you have exerted all of your reserves. When your body tells you that you had enough then you have NO CHOICE but to listen. Unfortunately this condition does not care about our reality, our jobs or our families. We have to set our own priorities. I had to learn this the hard way - I pushed through it for years and made things a lot worse. If you are not able to function safely ( whether to yourself or others ) then you might have to stop working, even if just temporarily. When we hit that wall there is no way to get around it. But having said that - it is not the end of your world, it is just a big pothole in the road that you need to get around in order to continue to travel. --- As the others have mentioned: you need to take care of yourself. When you are tired you need to rest, it is as simple as that. As a nurse you know the grieving stages - the biggest lesson for me was to realize my denial. By refusing to acknowledge my limits I wasted a lot of energy in fighting a useless battle. Once I learned what I CANNOT do I also found what I CAN still do - and all got better after that ( and a really good cry ). So - I understand what you are going through and I sympathize - but unfortunately my best advice is to take a well deserved break. Rest your weary body!!!!!! And also enjoy what matters the most in the mean time. Best wishes, Megan !!!!!!!!!!

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So sorry to see this.  I have also "hit a wall" several times in my life, due to this condition, and had to take a great deal of sick leave and once had to leave work for nearly a year.  I also make more than my self-employed husband does--some years a great deal more. I had short term disability insurance that helped slightly.  It's good that you are looking into what options are available but so sorry you are feeling so poorly.  Good your doctors are still doing testing, if standard treatments for dysautonomia are not helping.  Sometimes it can take awhile, months or more, to recover, even with medications that are appropriate--in my experience and from what I have seen on the forum over the years.  Take care.

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Thanks to everyone for your wonderful words!  Sometimes it helps just to be able to vent it out there.  Counting down the days until I see the Specialist.  At this point, I am receiving no medications for anything, because no one knows what they are treating.  But man, I am TIRED!!  Thanks everyone!

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When I was the kind of tired you are talking about, I had untreated pernicious anemia.  Not sure that is what is happening with you, but nobody thought to check with me.

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Well, the saga continues.  I see the NeuroEndocrine Specialist on May 21st and in the meantime, my Parathyroid Level came back a second time super high, but normal calcium, slightly low Vitamin D.  Am adding Vitamin D Supplements.  This is all just such a weird thing....

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22 hours ago, MeganMN said:

Well, the saga continues.  I see the NeuroEndocrine Specialist on May 21st and in the meantime, my Parathyroid Level came back a second time super high, but normal calcium, slightly low Vitamin D.  Am adding Vitamin D Supplements.  This is all just such a weird thing....

I hope you find some answers & relief. Are you having a scan of the parathyroids? If there is a functioning tumour there causing your problems, removing it could be a definitive fix.

B xxx

 

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thanks @bombsh3ll! Two more days until we go down to the University of Minnesota. Feeling exponentially worse since Vitamin D supplementation. I am getting a 24 hour urine calcium today and I suspect my serum calcium will be higher now. I have no idea what to expect. They will have to redo all the labs after my D comes up, I am sure. But really, I have no idea what to expect! this has all been so crazy. Will keep you posted!

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On 5/18/2019 at 5:10 PM, MeganMN said:

Will keep you posted!

Please do! I really hope you find something that can be treated!

B xxx

 

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I FEEL THE SAME WAY!!!  I am still working full time at a high stress job and have to fight to be at work and then have nothing left for home and family.  Every time I think I get a hold of this thing emotionally, I break.  This happened this weekend.  Looking around my house at all the stuff that needs done and can't do it because of no energy and feeling awful.  It has been almost a year since I was diagnosed.  I think Pistol said it best.  We have to overcompensate and have nothing left.  I am not sure of the solution for me either.  You are not alone though.

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Update...went to the University of Minnesota today for my visit with Endocrinology. She was super nice and super smart.  Frustrating nonetheless though because of the time frame.  She did confirm that she is officially diagnosing me with Carcinoid Syndrome and may end up treating me even though they cannot find the source. At this point, she thinks my parathyroid issues are related to the Vitamin D and wants to just recheck everything in two months. She basically said that there is a high probability of a carcinoid, and finding them can be pretty tough. She said that she is still on the fence about the parathyroid and will recheck labs today and again in two months.  For now, we watch and wait, and I pretend that I am not running on empty!

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Hi @MeganMN - I am glad that you had a good visit. What she told you makes sense. Now - regarding the continuing exhaustion: since there is no magic pill in sight for the next 2 months - have you considered taking time off? It is a long time to keep running on empty! ( If your car runs empty on gas, transmission fluid, brake fluid, steering fluid, antifreeze … it will break down )! This happened to me when I kept going despite my severe POTS symptoms - I wish it will not happen to you. As always - TAKE CARE OF YOURSELF!!!!! 

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