feeling defeated

We are having a difficult week. Her wound/ulcer has become deeper and we seem to be losing ground.. My heart is breaking but I refuse to give up! As a mother you hang on to every thread and I am still hanging in. I did the wound care myself this morning so I could get a good look at it. We return to the specialist on Feb 12 .. praying for a turn around <3
 
Thinking of you and your family - from reading through there is not a doubt in my mind you are a group of fighters. But just like a boxing match there are many rounds, keep it up and hoping you knock it out soon
 
Today is a full round of blood work, wondering where the results will take us. She is in absolute great cheer and happy I am home <3 Counting down the days to return to the specialist in the city , the 12 th of feb to see what he has to say. She is happily talking about a Disney trip, it sure keeps her spirits up! I don't know if I mentioned I returned to work on Jan 13. Only to have my employer present a letter and an improvement plan for the store I manage on the 31. Well it ate it me so much that I quit the job I worked at for almost 20 years! I strongly feel my employer is using my leave against me and almost "punishing " me for it. While I was gone from the position the restaurant failed miserably and I feel my employer is holding my leave as the reason so he is not happy with me. Just what I needed more stress on my plate. I had originally met with them on Jan 10 and nothing was mentioned returned the 13 and presented a letter on the 31 dated the 15. A major blow to the self esteem and gut. So yesterday I quit at the end of my shift. This was a major decision and now I need to see if I am eligible for EI so I will have to launch a case against the employer. My life feels as if its falling apart but my strongest feeling is ... I have my daughter <3 I knew when I applied for the leave my employer would not be happy as I have seen a lot in my 20 years but I have no regrets! Did it cost me my job... yes but I have my daughter <3 so as I spend the day crying, I walk into her room and see her beautiful smile and know .... we will be ok. Life goes on and we continue to push forward ... thanks for all the support as I am an emotional wreck ... hugs
 


Ugh, sorry about the job, I hope you can get EI. I just wanted to send you some support.
Thank you! It has been an emotional battle ever since Feb 2 @ 330 .... losing my financial security and its what I did for 20 years! My husband does the maintenance for the 10 restaurants plus my oldest DD works at another location and my DS works the summer and odd weekends while in university. So its difficult on all of us but like I stressed to my family continue with your employment as I know each of you are loyal to me and you don't have to quit b/c I did. They seem to be struggling with the idea of working there but I keep encouraging them. In the end I know I will get another job. Life continues and I see this as a new chapter .. forward I go! I LOVE my DD and I am not willing to negotiate her care for anyone or anything <3 At least today I have not cried about the job loss.. so I am getting there!
 
Today I am on a high! WOW.. her blood work is back and its looking the best I have seen! Her CRP which measures inflammation in the body is down to 33.7 .. this is the lowest its been in 2 years!!!!! I am beyond excited!!!! As a reference.. cop normal is 0-3 .. so yes its still increased but at one point during this illness her CRP was over 300!!!! So we have made great headway. Tomorrow we are off to see the specialist in the city, if the weather cooperates. Pending snowfall alert..... Now if we could get the wound to start closing but with all this amazing blood work her body will soon start to kick in. I still have no job which is frustrating but my EI is in the processing stage so it may all work out :) I have a final interview at a store in the mall on Thurs so I may have a new job! I applied for a few other jobs .. I actually think she saved me as I have been wanting a change but never brave enough to do it ... she gave me the push I needed!
 


Hello,
We are trending along positively! WOW!!! I am so happy <3 tomorrow is her blood work day so fingers crossed! The ulcer/wound is starting to fill in, now if only that continues. This is something we were told may never happen so to hear a bit of positivity is exciting! We are on a real high. She is continually asking about Disney, so if all trends positive she will get to go! We keep encouraging her and Disney keeps her spirits up which I honestly believe helps her heal. This week I will hear of I got a new job, so thats good too! hopefully this will be a wonderful week!!!! 2019 was NOT our year so bring 2020!!!!!!
 
I’m so glad to hear such positive news from you and your daughter!

sending along some extra strength ones for bloodwork tomorrow, and hopefully good news on the job front. 🥰
 
Waiting for the nurses to come and dress the wound. Also do her bloodworm. Today is a holiday so we will get the results tomorrow, fingers crossed! 8 months ago today we were planning her funeral.. typing that makes me shutter. Now here we are today reading along and talking about Disney! I don't know if it will happen but the thoughts keep her going <3
 
Unfortunately the blood labs are back and the CRP has doubled. The CRP indicates the inflammation in the body so its a concern. Her other labs were not too bad with the exception of her pre-albumin. However overall she looks well and I hang on to that <3 thanks for all the prayers. This illness is a journey and its very difficult. Thumbs down kind of day ...
 
I’m sorry to read that. what is the treatment in the meantime? To help with the inflammation
 
She has a pressure sore which is often referred to as an ulcer. Basically we need to keep it from getting infected or bigger/deeper. It is bone deep now but the bone has a thin covering so we need to at least maintain. She is on a variety of meds to keep the inflammation down. Also change the dressing on the ulcer using products to keep it clean and aid it to fill in. Also she is limited as to how much time she can spend on it so lots of turning and minimize sitting. She is in bed a lot at a 30 degree angle.Its a difficult illness and requires a lot of care/thinking. We love her so much! <3
 
Hello, another new week for us! Her labs this week are a bit improved! Very nice to see the CRP has dropped a bit now if we can trend that way! We went for a follow up with the surgeon yesterday, she felt the ulcer has started to tunnel again and is very concerned! She debated on removing some skin which would expose more surface area on the ulcer. I don't want that to happen as it will make the ulcer much larger but the risk of the tunnels is another issue! I am having a super sad day today, tears as I type. I keep a strong face. The surgeon has changed the way we pack the ulcer in the tunnel, as I asked if the packing is causing pressure so its a consideration. The ulcer is deadly ... staying on the upside her bloodworm is stable and she herself looks good.. I continue to hang on to that thought! Of course my old job has got me down, I hear all the gossiping and I can't help but take it to heart. I worked there almost 20 years so it weighs heavily on me! Still waiting on a decision from EI, did not get the job I was considering. On the upside I have a 2nd interview at the bank for a p/t position on Fri! Plus the cafe project has asked me for references so the wait continues! I know we have new chapters...
 
You have a lot to deal with. I will keep up with positive and happy thoughts and prayers.
people will talk, you can’t control that, try not to let that get to you.
Strong Hugs MOM
 
I have been feeling down since last week after the surgeon visit. The ulcer is starting to tunnel which is extremely dangerous! I am almost out of my mind ... More bloodwork tomorrow... fingers crossed! We don't go to the surgeon this week we go for follow up next week. The original job I applied for and thought the interview went extremely well, called and wants to discuss tomorrow. I thought it would be a good fit for me but since I have interviewed for 2 more jobs. 1 job is a contract for a year but full time and same wage as my old job, job # 2 is a 15 hour week position that may lead to more hours and same wage as old job. At a crossroads with the path to take.. still waiting for ei to make a decision. Life is a struggle .. but I have no regrets for quitting my job to care for my little lady. Just typing that cleared my head ....
 
Goo morning! We got the blood work back yesterday and it is trending better. All areas have improved and that feels positive. Now the ulcer itself is another issue, it is still tracking toward the femur. It is getting bigger and deeper. Feeling overwhelmed and sad today.
 

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