View Full Version : trying to cope

08-19-2012, 03:55 PM
Hello everyone,
Yes, It has been a while since my last post. I have been trying to figure this whole connective tissue thing out. Wow what a puzzle. I have realized in the past few months that I like everyone else will never have the life i am used to. I miss my old life. I miss not being tired, I miss being social. I miss feeling human...i miss the gym but most of all I miss my health. I look around me and get so upset when I see my freinds enjoying their lives. I don't understand how they have the energy to toss a ball with their kids. I miss the sun...Ok I miss my old life. Now that i vented and got that out of the way. I have spent the summer trying to understand how to cope with all this. I have tried to be optomistic, but for every two steps i take ahead.....i fall back 4 steps. I have little use of my right thumb. I'm always sick to my stomach...i'm on more meds than i can handle.....pls someone tell me there is a pot of gold at the end of this rainbow...or a rainbow at the end of this dark cloud...how do I live like this??? Everytime I go to the DR'S I find out i have something else wrong with me,,,,,, or they scare me ...blood vessels on brain.....immunization shots not working any more because my immunine system is shot.....batteling strep, colds, and pain all over,,,,,,,ugh!!! i'm only 43.....When ever i run into someone i hear how good i look and how skinny i am...i have to put on a brave face and smile and say ty...when all i really want to do is yell at them and say " i'v been puking for 5 weeks ...or if u only knew how i felt on the inside....tg i do not look sick on the outside,,,,,See what being absent from the forum does to me???? it makes me vent...anyone else want to vent??? I'm all ears......

08-19-2012, 05:30 PM
hi lynday sorry you are having such a bad time. i think we all miss our old life that is one of the major downers of this disease the adjustments we have to make. i to miss the sun but i have learn,t to get used to it. it is and up and down journey. hang in there feel better soon .hugs kim

08-20-2012, 06:45 AM
I am sorry you are having a hard time with this and I completely understand how you feel. I look at people walking and getting up early in the morning and are running around town dressed hair done, make up on all before I have even got my stupid body moving sometimes I never get my body too move. It stinks! Feel free to message me anytime I am on here most of the time as I am most of the times stuck in bed or on the couch. Its nice to have someone to talk too who understands how you feel and what you are going through. Hang in there girl!


08-20-2012, 08:54 AM
ty so much for ur support!!! I just feel like no one gets it......sorry u are in so much discomfort as well.....

08-20-2012, 09:06 AM
Its ok, I spent 2 years trying to figure out what was wrong with me and felt so alone. I understand the feeling of no one getting how you feel. It sucks and I am sorry you are having to go through that. But at least you are on this site with lots of people who understand and get it. You are not alone anymore. Praise the Lord! Like I said you are always welcome to hit me up to vent or to just chat about anything. I am here for you cause I know what its like to have no one around that understands how you feel or your pain from the lupus. You are in the right place.


08-20-2012, 11:34 AM
yes, i agree..... u can always hit me up as well...saftey in numbers...this is a great forum...the support here is amazing!!!!

08-20-2012, 11:59 AM
Hi and welcome to WHL! We are really glad that you found us.

I need to clarify something for those that are new to the disease or just learning about it and then I will speak to you specifically. AI issue (Auto Immune) do not come because our immune system is shot they come because our immune system works too well. The Immune System's job is to protect us from things that should not be there but instead it begins attacking different parts of our body. The job of the drugs that they put us on is to lower our immune system so it doesn't work so well. This is the reason that many doctors will take us off of Methotrexate or Imuran when we begin to get a cold/flu. Without doing so we could get even sicker because there is nothing to battle the disease. AIDs, on the other hand, is when the Immune system does not work well enough.

Now, back to you. Normal. Hmmm. Let's be honest and I will tell you that you will most likely never get back to the person you were before. You will, however, find a new normal where you don't feel like you do today. Between meds and modification of lifestyle (staying out of UV Rays, not getting over tired, etc) you will most likely live a long and enjoyable lifestyle. It will be different than it was before but that doesn't mean that it won't be good.

You are in that weird place where they are just now figuring out all of the things wrong with you and this part is completely overwhelming! "When will this ever end" is a question that many of us have faced and we will be here for you as you travel down this path. It will get better. It takes awhile but it will get better. Deep breaths, Good cries, Occasional rants and lots of support will help you get to the other side. We can't help with the first couple but we will be here for the last two!

08-21-2012, 10:56 AM
Praise the Lord for you tgal, it does in a time of turmoil, sadness, confussion and screaming inside. Ease all of it a lil when you know you have people like you help you learn to live, and figure out how to make it through these hard hard times. I personally just wanted to say thank you so very much. And let you know how much I appreciate and am thankful to have each and everyone of you to help me to understand and learn to live with this.


08-22-2012, 02:52 PM
Hi Lynday,
I'm glad to see you here again. Sometimes we do need to vent.
I woke up this morning dreaming that I was taking over my Latin classes again. I recently heard that the man who replaced me suddenly moved to a job in Dallas, leaving the Latin program that I developed in peril of being dissolved.
My heart of hearts wants to go back there and teach those kids again, but my body could never handle the stress.
I know that I can never teach in the classroom again, and that sucks!
Meanwhile, I've adapted to a much slower pace of life. I've gotten involved in some volunteer groups, which gets me out of the house a few times per month. I've also gotten to pursue a passion for gourmet cooking, which my hubby really appreciates. I've just resigned myself to the fact that a Rachael Ray 30 minute meal will always take me 90 minutes to prepare, so I plan accordingly. I'm also busy crocheting a baby blanket for the new grand-daughter who will arrive in October. Life is different, but it's good.
I hope that you find a new passion and begin to enjoy your slower life.

08-25-2012, 06:27 AM
U always advise and seem to understand what I am going through. Everything that you have said is so true. I was teacher my self...i get the passion. Thats just it..I have such passion and a zest for life. I used to be at the top of my game. Now i can't even hold my sons birthday cake without my arms getting tired. I can't chew my food without my mouth getting tired. What is this all about. How do i accept this? I'm so sad and depressed that I do not have the quality of life back. Its not just about me either. The ones that suffer are my kids and husband. They deserve to have a mommy that can play sports....run errands....make dinner and take them to their activities without me saying "i'm always tired". To embrace this new way of life is very challenging to me. I do not know how to slow down. My mind says go go go....and my body says STOP! UGH! i'm really trying to cope....but this is a hard thing to deal with. On the other hand I turn to this forum because it is the best!!!!! None around me understands that my thumb is deformed...none around me gets how bone tired I am...none around understands the pain and suffering inside...and i'm just not a complainer...I keep it all inside...when i do let my gaurd down its never what I want to hear......its always....WOW u look so good or ur so skinny...ur hair got longer....its just superfical....I would cute my hair....put on twenty pounds if that would mean I could get my old life back.....I know i will have to accept this sooner than latter...but at the moment i'm just really angry at this disease.....not just for me but for all that has this....i hope the sun continues to shine on us (even if we can't tolarate the heat) I hope the rain washes away the dark clouds....and most of all I hope that we all live a peaceful healthy life.....oh and MARLA CONGRATS!!!!!!!! this is the best news.......I can't wait to hear better news in OCT!!!!!! this will surly keep u busy and happy!!!!!

08-25-2012, 06:30 AM
thank you for the information....Ty for taking the time to answer my rant!!!!! Your words of wisdom is something I need to follow....I know I will find the courage to accept all this...>>>>i want to beat this...I think we all do....so with a good support team....i will hold my head high and try to have the courage to accept this illness.....