View Full Version : New to board and in need of support....feel despondent

06-13-2013, 05:20 AM
Hi, my name is Jen. I'm going to turn the big 4-0 next month ugh! I've been dx'd with UCTD and a myriad of other ailments...the list is just too long. I was involved in a seriously motorcycle accident in 2006 and I believe that set off a chain of events within my body. I have been unwell ever since. The diagnosing and constant referrals and all different kinds of tests and procedures make me feel like a lab rat. I used to be this deep, philosophical, spirituality seeking, do what u can to better yourself for the greater collective consciousness for the world kind of person. Now, I hate what I have become and what my life has turned into. I read different forums including this one in the hopes to find strength and understanding. The stress that is involved in my life is taking a toll on my health. Well-meaning family members believe I am "sick" because of the stress. I know we all have stress, but I have been dealt an heaping portion and it just never seems to end. In a nutshell (if that's even possible) ...got married, needed surgery, had extremely premature baby (micro preemie ) who required years of intervention services, became homeless (for the 1st time), parents got divorced because they both decided/realized that they are gay, moved to Florida and almost got divorced, moved back to ny (with him), daughter hospitalized for depression and self-injury, severe motorcycle accident, more surgery (broke leg and now have bionic rod a year later double level back surgery), lost our house in hurricane Irene...homeless for the 2nd time, daughter hospitalized numerous times again before becoming addicted to heroin and recently she hospitalized against her will for psychiatric issues, had her arrested after she stole all of my jewelry, son has no direction and a pothead, husband is bipolar, and dealing with running my daughter everywhere because she is in recovery now. Oh yea and my health issues and trying to get well. Needless to say, I am depressed. I went on cymbalta which I felt helped in the beginning and now I just feel sort of flatlined. My eyes were swollen shut this morning from crying last night after hubby got nasty. I feel like no one in my family understands or has any compassion except for my 13 year old youngest daughter. She worries about me all the time and I fear that for her well being. I read posts/articles about mindfulness and meditation and exercise and right now it just sounds so overwhelming. In fact, everything overwhelms me lately. The thought of food shopping or just getting ready to go out of the house is soo overwhelming. I hate the way these meds have changed my appearance. I used to be attractive with long beautiful hair. I chopped it off when it became dry and started falling out. Now it barely grows. Prednisone has made me fat and bloated. The one thing I enjoyed doing- laying in the sun by the pool with a good book- has now become my enemy.im so sick and tired of feeling sick and tired. I know you all must feel the same way. How do get my joy back? I'm sorry this post is soo long and I don't mean to "dump" ...just in a very bad place lately. If anyone can relate please let me know so I don't feel so alone in this.

06-13-2013, 05:56 AM
Hi Jen,

Welcome to WHL.
Wow, you have been through a lot.
I know, that stress is bad for anyone, but even more so, for us, with an autoimmune disease. Remind me, what UCTD stands for, so I don't have to google it.
Where in upstate NY do you live? I live in Rochester,NY.
WHL is the place to be, we are here to help each other.


06-13-2013, 07:35 AM
That's a lot of anybody to deal with in life! No wonder you feel "down"....

You need to tell your doctor what's going on (especially with the Cymbalta) and you need to find a really good therapist. Medication alone doesn't help you deal with so many difficult life events! Medication is NOT an effective substitute for "talk therapy" (any more than alcohol or illegal drugs are) and a competent therapist can help you develop coping strategies to deal with everything. If you don't have insurance, your doctor or a local hospital should be able to help you find a skilled Clinical Social Worker who is versed in trauma.

Through all your suffering, I detect an incredible, strong, positive person - the fact that you have persevered through so much means you are a survivor. It can help enormously to have somebody help you recognize and marshall those skills to help yourself.

06-13-2013, 07:56 AM
UCTD stands for undifferentiated connective tissue disease. I have all the symptoms and signs of lupus. I'm not sure what my rheumy is waiting for to just call it lupus already.
I do see a very good therapist. Started about a year ago. I like her a lot.
Sleepyinseattle- thank you for the kind words. I'm trying to fight and stay strong. Just overwhelmed I guess.

06-13-2013, 08:13 AM
UCTD stands for undifferentiated connective tissue disease. I have all the symptoms and signs of lupus. I'm not sure what my rheumy is waiting for to just call it lupus already.
I do see a very good therapist. Started about a year ago. I like her a lot.
Sleepyinseattle- thank you for the kind words. I'm trying to fight and stay strong. Just overwhelmed I guess.

I knew that, duh. Brain fog just didn't let me recall it.
I can see, how you would be overwhelmed.
Are you on any other meds, besides Symbalta? Even with the UCTD, you should be on Plaquenil.


06-13-2013, 08:40 AM
Hi and welcome to our family;
I can hear the overwhelming sadness in your words and I can only imagine how all of these issues must weigh upon you and deprive you of any form of joy. Please know that many of us have also felt completely alone, lost, joyless, and overwhelmed.
First, I want you to know that what you are feeling is natural and that it is to be expected. You have a large number of stressors in your life and you have suffered an enormous loss. That being, your health! This, alone, is enough to cause a deep depression. But add to it the other substantial stresses that you are dealing with and it is no wonder that you are feeling a bit hopeless.
The disease, itself, causes clinical depression. It is normal to grieve for the loss of the life you had before lupus. The strongest indicator of clinical depression is loss of interest in activities and responsibilities that used to be important, such as you have described. Clinical depression may be brought about by lupus itself, by the various medications used to treat lupus, and/or by any of the factors and forces in your life that causes stress. You, my sweet, are probably dealing with ALL of the above. But know that this type of depression is often experienced by people with chronic diseases such as Lupus. But please know that there is good news. If properly treated, symptoms of clinical depression can improve.
The following information is from the Lupus Foundation's website and it deals with ways to treat clinical depression:
Clinical depression generally improves with a combination of psychotherapy and medication.

Seek psychotherapy/counseling. You should not feel embarrassed or hesitant about asking your doctor for a referral to a psychiatrist, psychologist, or therapist. With he guidance of a trained professional, you can learn to understand your feelings, your illness, and your relationships, and learn how to cope more effectively with stress. Support groups also can be instrumental in helping you deal with symptoms of clinical depression. To find a group in your area, go to lupus.org/chapters (http://lupus.org/chapters) or call toll-free (800) 558-0121.

Take antidepressant medications. Several types of medications can help ease the effects of clinical depression. Anti-anxiety medicines are also available. You can see improvements in a matter of weeks in some people once medication is started.

Find ways to reduce pain. Chronic pain can be a factor in the development of clinical depression. In addition to medication, exercise programs, such as yoga, tai chi, Pilates, acupuncture, biofeedback, meditation, behavioral changes, play therapy, and chiropractic care can reduce pain and help with depression. Do not use any over the counter herbal medication without prior approval of your doctor.

Get more exercise. Take part in some sort of physical activity every day. This can be as simple as walking the dog, yard work or gardening, or window shopping at the mall.

Improve your sleep habits. To improve your sleep, and, in turn, your mental well-being, try to:

Get 7-8 hours of sleep in a 24-hour period.
Do aerobic exercise every day, such as brisk walking—or whatever you can manage.
Avoid caffeine, nicotine, and alcohol.
Know which medications keep you from sleeping and take those early in the day.
Have a good mattress, comfortable bed linens, the right room temperature, and the right amount of darkness.
Include rest periods throughout your day when needed.

Build a support system.Stay in touch with family members, former work buddies, or long-time friends. Make phone calls, join Facebook, try videoconferencing, or consider adding an animal companion to your family.

Stronger Ties With Friends & Family
Treating depression may improve your social life. Depression isolates people. While therapy and medication can help, you still need to decide to reach out. Reconnecting to old friends - not to mention making new ones -- is hard. But it’s a crucial part of getting better.
Getting Help
Don't try to wait out your depression hoping it will get better. Get help now. The sooner you get help, the better your odds are for a healthy future.
Better Love Life
70% of people with depression reported a loss of sexual interest while not taking medicine. Treatment and proper medications may help restore your self-confidence and strengthen your emotional connection with your partner.
Pain Relief
Treatment for your depression can make you feel better emotionally and may reduce pain. That’s because depression can contribute to the discomfort of pain. Seeking treatment may help provide relief.
Improved Health
Getting treatment may help prevent some serious diseases down the road (such as cardiac complications or overlapping diseases).
Sharper Thinking and Better Memory
Depression might cause structural changes to the areas of the brain involved in memory and decision-making. Treatment may prevent or reverse these changes.
Healthier Lifestyle
Depression cause some people to gain weight and in conjunction with some medications, this can cause even greater depression. Low levels of certain brain chemicals due to depression can trigger a craving for carbs. Getting treatment may change that while giving you the energy to exercise and eat well.
Lower Risk of Future Depression
People who have been depressed have a higher risk of becoming depressed again. But ongoing therapy or medication may help prevent depression from coming back. .

Change your self-talk. Feelings of anger and self-pity can bring on unproductive thoughts; for example, “It’s not fair. I haven’t done anything wrong. Why me?” “I’m too weak even to fight off this illness.” Replace negative, self-defeating inner language with truthful, productive thoughts, such as: “I feel lousy, but I have many blessings.”

You can also list the people and things in your life for which you are grateful: A loving spouse or significant other; your children, and the children of your extended family; caring relatives; good friends; a beloved pet; work or hobbies you enjoy and are able to do; a home you love; volunteer activities; fellowship at school, at a place of worship, or at a community center. Try to add to this list every day!

Strive to accept the new “you.” Pace yourself, and don’t feel badly about delegating some of your responsibilities. Ask for help, and accept help graciously. Finally, focus on what you have, not on what you don’t have, and on what you can do, rather than what you can’t do.

I do hope that this information has been helpful to you. Please let us know if we can help in any way. Also, know that we are here for you whenever you need us. This is a global family and you will find that there is always someone here when you need to talk. I wish you well.

Peace and Blessings

06-14-2013, 12:28 AM
Hi and welcome to the WHL family. We are glad to have you with us.

You have received such wonderful advice that there isn't much that I can add. Just remember that not only are you dealing with the mental/emotional issues you have going on but many times the disease itself can affect the hormones in your brain and cause an imbalance. There is no shame in asking for help. It takes strength to say you need it.

We will be here for you as you travel this path. Once again, welcome to our family

06-14-2013, 03:42 AM
Thank you all, it really means a lot. I do ask for help. The situation just is what it is and really takes its toll.
Besides cymbalta, I was on plaquenil but didn't have any response to it so he switched me to 500 mg Aralen (chloroquine instead of hydroxychloroquine) and yes I do get my eyes checked because of it. I'm also on 6 mg of medrol every other day as a maintenance dose.
I think is saysusie's post one thing that stuck out is "changing the self talk". It's so easy to get stuck in that rut especially when you don't feel well enough to get up and do something. I will try to work on that!