View Full Version : Triple Threat.
05-14-2008, 08:12 PM
Today I was diagnosed with MS, Prednisone-Induced Diabetes AND my Lupus is getting progressively worse.
I'm not going to lie to you, I wanted to cry. You know what I think the hardest part of being sick is? Relationships. Even your friends and family have a hard time grasping the concept that just because you don't mention it every day doesn't mean you aren't sick. And as much as I struggle with relationships now, I know having MS is just going to complicate matters and there are times I just want to say "NO. I REFUSE TO ACCEPT YOUR DX!"
Today was one of those days. I wanted someone to go with me to my doctor appointment because I knew it wasn't going to be good news. But my bf is out of town, my family was all "too busy" and my friends gave up on me a long time ago. Because I'm only 25 but I can't keep up with that age group, heck I can't even keep up with my 80yr old grandpa!
I don't know where I was going with this...hoping for a hug, a pat on the back, a friendly "I've been there too" speech....
05-14-2008, 09:03 PM
A big tight unable to breathe hug. Squeeze...for you
If I was near I would have pulled up to your house with my SUV. Not honked, but walked to your front door and walked with you...side by side, step by step to your doctors...
At 25, or 47 we all are still tender hearted, that sometimes we need our hand held as we go through some stages, circumstances, events in our lives. This was one of them for you. I know what you feel like, felt like before you appointment and afterwards . Not the same diagnose as you, but they same lonely feeling. It is hard to choked it down.
I wish I could be more than words, support on a screen for you. I care.
Tomorrow or Friday, read up on your new diagnoses, and see what you can do to accommodate, change up, modify or ease up some of the symptoms. Learning will possibly give you a feeling of control without denying your diagnose.
Change is hard to do, especially when we have to....sigh.
A big Oluwa head hug for you...
05-15-2008, 08:01 AM
You poor thing, wish I could have been there. I don't like going alone to docs either, but a lot of times I do. I don't have anyone else to chat with much here, spend most my time alone with kids. Not much conversation there :lol: . This place is a God send that has helped me so much, I can always find an understanding person here. I know how you feel on telling people your sick. If you don't, they think you can do anything. If you do (especially daily), then your a whiner :? .
I only have FMS and a connective tissue disorder that docs unsure of which. I could not imagine what you have to go through. Vent, cry, chat or whatever you wish. I'm listening, as well as many others. Hope your day only gets better. Many gentle hugs, tighter ones later if it won't give you boo-boo's :lol: . Hope to hear from you soon.
I have a friendly "I've been there too" speech for you. I was diagnosed with SLE in 2004. I was diagnosed with M.S. just about a month ago. The term "overlapping illness" was something I had never heard of, or maybe I just didn't want to think about. I'm 40 and feel like I'm 80 most days. I have to have another IV steroid treatment because the first attempt didn't work. I was a very active person. The life of the party. I was an avid outdoor person, climb mountains, hike the Grand Canyon in 3 days, used to compete in trap and skeet shooting. I can't do any of that now. My long term relationship with my soon to be wife ended, and most of my friends stopped calling, or coming around. I lost my business, my dream job. I feel like crying too, quite a bit. I wish I had some motivational words for you, but today I just don't have them. But, know that you are not alone. I know the feelings you are having, believe me, I really do. I try to tell myself that I will have more good days ahead of me still. I try to push through the bad days, and savor the good ones when they happen. Talking to my friends here really helps my morale. I hope talking here helps you too. Hang in there.
05-15-2008, 09:23 AM
I think that we all can relate to the loneliness of this disease; the friends who don't (or won't) understand, the family that is too busy for us, and the constant delivery of bad news at every doctor's appointment. It's enough to make anyone cry and/or become frustrated and angry.
You are very young and I know how hard it must be to know that you can no longer do those things that your peers are doing. I remember my daughter telling me often that she could no longer stand to look at herself because she didn't recognize her body (swollen from steroids), she hated the fact that she felt like an arthritic old person; unable to bend, unable to stand, unable to move, and she was so tired of always being sick; 24 hours/day - 7 days/week. She felt as if she had lost all of her friends because no one called, no one visited...she just felt terribly alone and unhappy.
What you are feeling is justifiable and very real, you have every right to feel the way that you do. I wish that I could hold you and comfort you the way that I held and comforted my daughter. The best that I can do is to send you understanding and a comforting cyber hug to let you know that we are all here for you, we all understand and care about you. You are never alone when you are here with us.
Peace and Blessings
05-15-2008, 11:47 AM
Hello Rob, you too I see have MS. Sorry to hear that. I know how you feel somewhat about the person you use to be. Although you did a lot, would have loved to do those things. I used to be as strong, if not stronger than the guys. Power walks, leg presses (my legs were my strongest feature), heavy lifting, swimming in the ocean (loved fighting the currents), all kinds of things. Now with FMS I find it difficult just to walk around the block sometimes or keep up with the kids. The only thing I can lift these days is a jug of milk, and that takes 2 hands. How I pick up and carry my 1yr old still baffles me, hurts so much to do so. I morn the person I used to be at times. You have lost more than me, your strength is something I'd like to have. Can I swipe me some :lol: ? I hope your day's going good. Glad you found this place, we all enjoy hearing from you :D .
05-15-2008, 01:25 PM
Also_ran, I will grieve with you over the loss of those things that you miss. Know that we all really, really DO understand here. Everyone here has faced some kind of loss, and grieves it every day.
It must be so hard at your age - I'm a lot older than you (a LOT :cry:) and it was a hard thing for me to hear. Going to the doctor is never a treat, but when you know it's going to be not-good news, it's so hard to go alone. I hope your bf will be around for your appointments in the future. I drag my husband along whenever I can.
This is a wonderful place to find support and someone who can 'listen' and give you some honest answers (or just a shoulder to cry on.) Do you have a lupus support group in your area? It might be good for you to find a local group, too. I have a good support group in my town, and seeing them regularly is like therapy - I just came from lunch with some of this group, in fact. Like this 'family' here on WHL, we can talk about being sick without feeling embarrassed or like we're 'whining'...that's what a support group is for, right?
I hope this group can give you some of the support that you need. There's always someone here to answer questions, and I think you'll find that there's always someone who had an experience similar to yours.
Hope tomorrow is a better day for you.
05-15-2008, 03:21 PM
Just thinking of you and wishing you some peace and acceptance.
05-15-2008, 03:39 PM
I'm so sorry, also_ran...... support is so essential. I know what you mean about friends drifting away though I've managed to hold onto the few that count. Even still, my best bud has a hard time hearing about me being sick, and my dearest friend, dearest cuz shes a woman and thus soft and comforting started pulling away without realizingf it.
You may want to take the plunge, pick the friend that was closest to you, and genty confront them, let them know you need them and you understand how hard it is to care for someone who is so ill.
My dear friend was simply doing what she thought best, which was to not coddle me.. trying to get e to man up, as it were.... once we talked, she researched chronic disease on the web and learned she was doing everything wrong.... maybe one of your friends will do the same.... what have you got to lose from trying? Maybe one of your friends, or most of them, are simply too frightened, or are doing the wrong things our of love like my friend was.... i urge you to try....
otherwise.... not sure where in michigan you are, but if we are in any way near each other, feel free to ask for whatever i can offer... it would be nice to be able to sit across a table with someone, coffe in hand, and know they understand completely what i am saying, and to offer the same to them.
i cat imaqginer gettign by without my wife and friends to support me... i feel for you... but maybe, just maybe, you can find yourself a litle less alone, too...
05-15-2008, 04:39 PM
Hugsss to you also_ran
I'm so sorry you had to go through that by yourself. It hurts the heart.
As other have so beautifly put, we are here for you. Have you spoken with your boyfriend and your family yet?
05-17-2008, 12:37 PM
Many many hugs.....
At this stage, I "only" have lupus. My SO has MS, she's unable to drive most days, and is on disability. I've learned a lot about that condition in the last several years.
Life is so full of twists and turns. Around each corner you learn a little more - who you can count on, who truly loves you as a friend or partner. You have many friends here, we support each other and care for each other. That is such a special thing - you're in many hearts, also_ran, and we'll run with you along the way.
05-18-2008, 06:34 AM
Hi Also Ran...
Just checkin' in on you..to see how your spirit is today and how IT and the gunk has been to you?
Somedays I just want to strangle IT, but then that feeling just inflames IT more. It's hard to accept something we simply just don't want, eh?
I hope you are finding a bit of joy in your day in your neck of the woods. I find, sometimes I just have to make it http://www.mysmiley.net/imgs/smile/party/party0010.gif (http://irritable-bowel-syndrome.tumblr.com/) to find joy.
Your BF back yet? You always have us too...
sick n tired
05-18-2008, 10:17 PM
I am soooo sorry to hear the trials you are going through. I do wish that I lived near you....I am in Texas. The first thing that I did was look to see where you live. I hate how isolated that this stuff makes us feel.
You are always in my prayers...it is true when I say that I pray at every remembrance of you....I hope that today is a better day for you, friend.
Also-ran, I will have you in those prayers, too