A little of my story, feeling pretty sad and low

[Dragonfly72]

I was diagnosed in March with CD, after almost 2 years of D & 40 pound weight loss, I have gained 8lbsback now. I have been out of work for 2.5 mos and see my primary this week to discuss returning to work on the 24th. Here is what is making me feel very sad and down, I am scared I won't have the stamina to return to 10-11hour shifts (I am a nurse) and you are going That whole time.

I am trying to get out and do things but, find myself physically drained around 4 hours later and nauseated, I am still having my right side pain (elitis of small bowel 25cm inflamed) and my bowels are all over the place! I am constipated or I am just continuously going.

Also, my hair has thinned out and my scalp sort of burns and hurts to the touch!
I am going fora wig tomorrow. Which makes me feel so unattractive:-(. I am currently single and at a loss for trying to meet someone~
My question is has anyone heard of recovery taking this long? Have you heard of or have had your hair thin out? And last but not least.... In your opinion what should I do about work? ( I am on short term disability)

My meds are as follows: 6-MP, remicade, hycosamine, vit-B12, vitamin C withD, klonapin, Prozac, ambien CR, colace as needed and mirilax as needed, tramadol as needed and Tylenol as needed.

I could really use some words of wisdom and some encouragement... I think I am hitting an all time low:-(. Sorry for the lengthy story... I appreciate any feedback~. M

 

[Honey]

Hi there,
So sorry to hear you are feeling low. Coping with all the changes of treatment and side-effects is hard. I was giving myself Methotrexate injections at one point: it made me feel very emotional ,and my hair thinned and stopped growing. After all that, it did not work. I shed tears too!!! I am now on Remicade infusions which have reduced the inflammation, so I am feeling better. My feeling is you are pushing yourself too much. Your body lets you know when to slow down!! You are obviously not well enough to go back to a full shift, so is it possible to take more time off until your symptoms improve? Or, can you work part-time- speak to your Doctor, and Boss. Meds affect your hair and scalp, and that is very upsetting, naturally. It has done that with me too. It helps to vent how you feel on this site . Please let me know how you are. Best wishes.

 

[nogutsnoglory]

I am very understanding of what you are going through. I have no energy and right now out of a job. I'm so scared of commuting and working full days. Some days it's hard enough for me to get up and get a glass of water never mind function in society.

Do you have to return to work? Maybe you can use up FMLA and vacation time? Or go on short term disability?

 

[723crossroads]

I am so sorry you are having it so rough right now! I hope you can find a schedule which you could handle. Is there a possibility of speaking with your boss and explaining and trying part time till you are well enough? It is horrible trying to work when you have no energy and being a nurse is so demanding. I bless people like you so much for all you do! I wanted to be a nurse when I was younger, and now I realize what a difficult job it is. Hope you get some answers soon!

 

[Traumanurse]

Hello and welcome to this wonderful forum!

I felt I just had to answer this one since I related to exactly what you are saying. I think there are a LOT of healthcare workers on here including a lot of us nurses, so we empathize with what you're saying. I tried really hard to continue the long shift work for years after diagnosis.

I personally had to eventually quit the long shifts and call in for the ER. Just couldnt do it any more until I hit a true remission which took about 4 years the first time.

The good news for me, and maybe you, is that there is a whole huge world for employment for nurses nowadays. If your floor work doesn't go well, there may be excellent opportunities waiting for you out there that can coincide with coping with a chronic illness. I work from home most of the time now. I started my own business and work full time when things are good, but able to take time off when needed.

Just some thoughts and encouragement. You know the saying about when a door closes, a window sometimes opens. :ylol:

 

[charlottevet]

hello

sorry to hear how bad you have been feeling, im as yet undiagnosed but can identify!! If you dont mind me asking, by what method were you diagnosed? Colonoscopy? MRI?
xx

 

[Dragonfly72]

Thank you, you are all so wonderful! I am currently on short term disability and if I return to work part time my short term disability stops, and if I'm still in a flare ( which they say I am) which means if I am sick and have to be out again i would have to be out a month in order for it to kick in again. Financially that would be horrible, since I am still catching up from march and havin 1 month without pay.
Iused all my earn time (meant for payed days off) for all the testing and doctors appointments leading unto my hospitalization!

Charlotte I was diagnosed by having 2 colonoscopies and a cat-scan with contrast, no MRI

I see my PCP in 2 days so, i will let all of you know what he says!

My parents and I went and picked up my wig today, and boy!!!! My parents immediately said to me "you don't look sick anymore, you look like you again" my mom and I started to cry and my dad said i looked pretty!!!

I am so happy I went and bought a wig, at least I have a little of my confidence back.

Again, thank you all for your encouraging words and your wisdom! I feel more comfortable now to reach out to you and not feel so alone~. Xo. Michele