Lupus Message Boards
Register Latest Topics
 
 
 


Reply
  Author   Comment   Page 2 of 4      Prev   1   2   3   4   Next
seadancer1

Avatar / Picture

Active Member
Registered:
Posts: 43
 #16 
I so much agree with her...no one wants to leave here, but as time goes by and you get older you start to feel like everyone is abandoning you!
vanfran24

Avatar / Picture

Active Member
Registered:
Posts: 30
 #17 
 Taffy - thank you for your response.  And yes, coming on here is sort of like having a new family.  It might be an online family, but at least it's a place where you can talk to people who understand you.  As for my actual family....to answer your post that was written in March - I think the reason I give my brothers slack is that as busy as their lives are, they actually try to help when they can.  My sister on the other hand, I only talk to when birthdays and holidays or when she needs something for the kids.  One of my nieces turned 9 on easter.  As i was getting ready to leave with my mom she started crying that she never sees us anymore(my sister recently moved to the outskirts of the city with her boyfriend).  My mom and I told her she can use her sisters phone and call us anytime she wants if she want to talk....my sister overheard this and got mad saying "she doesn't need to call you guys every week and if she wants to talk to you she can wait until I get home from work"....which basically is code for, we won't be getting a call from her. I have plenty of other nieces and nephews, but my sister's kids are a different story.  I helped raise those girls.  I put off going to college so that i could be a full time nanny for my oldest niece when my sister had her.  To not be able to see them, or even talk to them regularly is what hurts the most.  

 I've talked it over with my SO and we've both agreed that the only solution to the situation with my family is to put some distance between us.  We're working getting our credit up so that we can move to another city and use his VA loan to buy a house.  I love my family more than anything - but I'm tired of being hurt.  I'm tired of trying to reach out to them and being rejected.  I've come to realize that there are some things that might not be fixable, that maybe time will help us work things out, but for now I need to walk away from them.  

__________________
Sick and tired of feeling sick and tired
Lifesclue

Avatar / Picture

Junior Member
Registered:
Posts: 18
 #18 
I have both lupus and lymphoma so I tend to feel very lonely a lot. Many of the people that go to my clinic are way older than I am. Many of my friends do not understand what I have to go through and my boyfriend tries to be there as much as he can but it can be difficult for him as well. I also sometimes feel like I do not want to be alone but then I do. I would rather not put my burdens on others, making it a very lonely process and a lot of lonely appointments. I want to not feel alone but I also find it hard trying to explain over and over again how I am feeling or being misunderstood in the process. The loneliness and misunderstandings are the biggest struggles right now and it worries me. It's hard to find someone who understands the pain, constant appointment, restrictions, medicine and the general mood of lupus and it is even harder finding someone around my age who understands. Most of my friends or people I know are dealing with new families or traveling or just typical adulthood, whereas I have to waddle through my illnesses. I also feel whiny expressing this but I do not do it for pity just understanding. I do not like feeling or being alone in my illness but I know I am.
Cakelady

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 4,707
 #19 
Life you are not alone. A lot of people are in the same boat as you are. I have met a lot of people on this forum. The way this forum works is for you to post and for you to respond to people that's how you get to know people and people get to know you.

Hang in there

__________________
The bond that links our true family is not one of blood, but one of respect and joy in each other's life
Lifesclue

Avatar / Picture

Junior Member
Registered:
Posts: 18
 #20 
I am liking this forum and the responses I am getting. I still get the lonely feeling but I think this forum and a few other things I am beginning to do will help with that feeling. It helps to not go through this alone and know that there are people out there who understand me and my situation and that I can share support with.
Mr. Bun

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 1,096
 #21 
Lifesclue? This forum has saved me from losing my mind. Not only have I learned more about lupus here.....than any other site...... I have been saved from my dark rabbit hole of dispair. Being sick, living alone, forced to quit working and losing all one's friends.....really does a number on you. I signed up for this forum about 2015, November i think. Made the acquaintance of some of the dearest people I have ever known. One sadly passed away. Never met him in person.....am still grieving for him. Two others.....became very important to me.....and will always remain precious to me. Stick around....it's a comfy, cosy virtual place. (it used to be) You'll see. Take care, Bun

I take it back.  this board is a shadow of it's former self
Lifesclue

Avatar / Picture

Junior Member
Registered:
Posts: 18
 #22 
Mr. Bun,

So right now I am in the early stages of losing my mind. I usually get hospitalized during the winter months and I have become used to it. This year though I have been hospitalized 4 times which is a new record for me. My issue is, no one can figure out was wrong currently. I am seeing multiple specialists but still getting sick. I am also getting the feeling (though it may not be a truthful feeling) that none of the specialists actually want to deal with my illness or they do not think it is related to their field. It is making me feel unwanted and uncomfortable at appointments or even in the hospital.

I am trying to keep my head up through this all and this forum has given me a better outlook on things but it is hard not to get down at times. I do like the few people I have met so far on here and it feels like an escape from all that I am going through right now.

Thanks for the advice
taffylinden

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 926
 #23 
Hi. Lifesclue. I'm glad you found this place. It's hard to explain what it's meant to me. When I've been  upset about some aspect of this stupid disease, I know I can find people who understand like nobody else. They also help me keep my troubles in perspective, as many people here have worse symptoms than I do. 

I think you and I are like in that I also refuse to burden others with my medical care. If your friends and family are like mine, this is very frustrating for them, but I just can't do it. I was in a nightmarish marriage for a very long time, and I learned then it was easier that way: my ex either got angry that I was inconveniencing him by asking for a ride to/from the hospital (because they won't discharge you without someone else driving) or telling me to face it, I was dying or going blind or whatever. I was also raised to paddle my own canoe. I also don't want to get dependent on others because it makes it harder to be independent, which I must be. I don't mind going to appointments alone, though: the only tough times have been waking up from surgery and realizing how alone I am. I'm only saying all this in case some of it sounds familiar to you. You are definitely not alone!

Re: doctors, could it be that they're frustrated that they can't diagnose you? I've found that some specialists get squiffy or distant if they can't figure out your case. 
vanfran24

Avatar / Picture

Active Member
Registered:
Posts: 30
 #24 
lifesclue......this forum is a great help to many people.  It helps us not to feel so alone, knowing that there are others out there going through the same things.  I've learned to keep my distance from specific people.  I take life one day at a time, because I prefer not to think about the "what ifs" in my life.  Living with lupus can be unpredictable, so dwelling on what might happen will only drive you crazy and leave you depressed. As for you doctors, well they can get frustrated when they can't figure things out.  They also may not have much experience with lupus cases and your situation might prove to be a bit more complicated t han they are used to.  You should try and see if there is a lupus specialist in your area.  I actually travel 3 hours to see my lupus doctor every few months.  
__________________
Sick and tired of feeling sick and tired
Dolphin

Avatar / Picture

Active Member
Registered:
Posts: 50
 #25 
Hi lifesclue. I'm around ur age, early 20's, less than 25.  I'm very sorry u had lymphoma, it must be very tough :(    It is very frustrating dealing with the rheum's. The best advice I got from other dr's that aren't rheumatologist's was that as I'm young and an unusual case to go to a university hospital/ teaching hospital and get this sorted out. Look at the big names Mayo, Hopkins, Clevland or a medical school in ur state.  For some of these such as Mayo no referral  is needed so u can get in even quicker than a regular rheum. Another advantage to major hospital is that if ur having multiple medical concerns the rheum should be able to send u to that specialists at same location.   At the unviersity hospital I got dx'd immediately in the same day and 3 other rheums prior did nothing.  Also, take pics of all ur sx's and document everything it is good to have a written timeline of symptoms. 
Cakelady

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 4,707
 #26 
All good advice dolphin also keeping a note book of your symtoms and any questions you have will also help. If possible alway get a copy of your labs or any test that you have had done. It helps that you have a copy of your own records.

When going to a teaching hospital just remember to be you will more then likely be seeing more then one doctor and you will more then likely have to repeat yourself over and over again. It can be frustrating but this is how they learn.

__________________
The bond that links our true family is not one of blood, but one of respect and joy in each other's life
Dolphin

Avatar / Picture

Active Member
Registered:
Posts: 50
 #27 
Yes Cakelady is right def. have copies of ur old labs ! I did and so I got my dx immedately at teaching hospital with no labs drawn at all or other tests as a rheum decided that 5/5 + ANA's is not a lab error given my symptoms. On my timeline for symptoms, I also included a labs section such as as low wbc 4 times in 2016, + ENA in 2015, etc..
Cakelady

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 4,707
 #28 
You know my rhemy likes labs just about every time I go in and I see her once a month. This month I will have seen her twice. I kinda get mad with all the labs because half the time they do not reflect how you are feeling but ...........
__________________
The bond that links our true family is not one of blood, but one of respect and joy in each other's life
Dolphin

Avatar / Picture

Active Member
Registered:
Posts: 50
 #29 
Cakelady, besides + ANA my labs can fluctuate so I agree it is quite frustrating.  Got results today and my total complement is high, which I think is good for SLE,   but my blood counts are flagged low but not critically low which is very common in SLE so idk if its bad, good,  or if they cancel each other out :/
Cakelady

Avatar / Picture

Senior Contributing Member
Registered:
Posts: 4,707
 #30 
See here is where it doesn't make sense. If you have a positive ANA your C3 and C4 should be low if you are in a flare but mine are always high with a positive ANA and my SED rate the last time was in the 80's which is way way to high. I also take a vitamin D prescription once a week but my vitamin D is still way low so I have to take vitamin D everyday the over the counter type it can be so frustrating. I think that's why I get so upset when someone comes on here and thinks they know it all. Everyone is different and what works for someone might not work for someone else. Lupus is a really nasty diease
__________________
The bond that links our true family is not one of blood, but one of respect and joy in each other's life
Previous Topic | Next Topic
Print
Reply

Quick Navigation: