Thank you all
I appreciate all the feedback. It is funny but since the diagnosis I have felt more tired and more depressed. Other than that, physically, I feel the same as I did before getting the phone call. I am hoping this all psychosomatic.
My biggest concern right now is my job/flying. I have to fly several times between now and November, including (as mentioned earlier) to Europe-not to mention across the USA several times. I think I will look into getting those socks for DVT, but first I will get on the prescription. I want to punch my doctor for not forcing me to go on it earlier.
Speaking of which, can anyone recommend a good rheumy/site to find a good rheumy in Michigan. My current one is HORRIBLE-no bedside manner.
I'm sorry I live in PA. But if it were me, I would look for a lupus support network in Michigan and find out if anyone has a favorite one. My rheumy is wonderful. She is part of an orthopedic center that is very large yet personal. I do wish you the best. Do all you can to enjoy yourself on your travels. I've learned that how I manage my stress makes a huge difference. I believe it takes time to adjust to a new diagnosis. I was wiped out by my new fibromyalgia diagnosis. It's silly for me, because I have had the symptoms for years and kept blaming lupus. I guess the adding of more and more diagnosis, never makes it any easier. Grief stages are bound to happen and its okay in my.book.
Since my flare up in March I've been going to therapy and one of the things she suggested talking about was grief and the loss associated with getting diagnosed with a chronic illness.
Originally Posted by lovedbyHim
We have discussed it often on here but it seems appropriate to bring it up now. Finding out that you have Lupus or some other life altering disease isn't easy. Although your life is not over it will change and you are allowed to grieve for that. Actually you are more then allowed, you really have no choice. There are 7 stages to grief and, one way or another, you will go through them. Acknowledging the stages and allowing yourself to work through them will make the transition into your new life much easier.
The death is the death of who we were but never forget that there is a "who we will be"
7 Stages of Grief...
1. SHOCK & DENIAL-
You will probably react to learning of the loss with numbed disbelief. You may deny the reality of the loss at some level, in order to avoid the pain. Shock provides emotional protection from being overwhelmed all at once. This may last for weeks.
2. PAIN & GUILT-
As the shock wears off, it is replaced with the suffering of unbelievable pain. Although excruciating and almost unbearable, it is important that you experience the pain fully, and not hide it, avoid it or escape from it with alcohol or drugs.
You may have guilty feelings or remorse over things you did or didn't do with your loved one. Life feels chaotic and scary during this phase.
3. ANGER & BARGAINING-
Frustration gives way to anger, and you may lash out and lay unwarranted blame for the death on someone else. Please try to control this, as permanent damage to your relationships may result. This is a time for the release of bottled up emotion.
You may rail against fate, questioning "Why me?" You may also try to bargain in vain with the powers that be for a way out of your despair ("I will never drink again if you just bring him back")
4. "DEPRESSION", REFLECTION, LONELINESS-
Just when your friends may think you should be getting on with your life, a long period of sad reflection will likely overtake you. This is a normal stage of grief, so do not be "talked out of it" by well-meaning outsiders. Encouragement from others is not helpful to you during this stage of grieving.
During this time, you finally realize the true magnitude of your loss, and it depresses you. You may isolate yourself on purpose, reflect on things you did with your lost one, and focus on memories of the past. You may sense feelings of emptiness or despair.
5. THE UPWARD TURN-
As you start to adjust to life without your dear one, your life becomes a little calmer and more organized. Your physical symptoms lessen, and your "depression" begins to lift slightly.
6. RECONSTRUCTION & WORKING THROUGH-
As you become more functional, your mind starts working again, and you will find yourself seeking realistic solutions to problems posed by life without your loved one. You will start to work on practical and financial problems and reconstructing yourself and your life without him or her.
7. ACCEPTANCE & HOPE-
During this, the last of the seven stages in this grief model, you learn to accept and deal with the reality of your situation. Acceptance does not necessarily mean instant happiness. Given the pain and turmoil you have experienced, you can never return to the carefree, untroubled YOU that existed before this tragedy. But you will find a way forward.
You will start to look forward and actually plan things for the future. Eventually, you will be able to think about your lost loved one without pain; sadness, yes, but the wrenching pain will be gone. You will once again anticipate some good times to come, and yes, even find joy again in the experience of living.
There are other pages that explain this a bit better but I felt this would be the easiest for everyone to understand
I feel like when reading this I am the loved one lost. Thats kind of sad in and of itself.
You are but the good news is that there is a new you that will emerge
Originally Posted by ritzbit
Originally Posted by tazdmb
We all get tied that's another affect with lupus or any autoimmune disease and depression it just loves makes your sysmptoms feel worse.
Refering flying i've had DVT and it's very painful please do look into getting those medical socks for the condition because it's better to be safe than sorry plus that take any pressure away while flying.
I'm sorry i can't recommend a Rheumo for you beingin the uk myself.
i have a pair of the sox. they work well.
just remember that if you are holding fluid (swollen joints), it can be a little uncomfortable, after a while.
Welcome to WHL. Keep reading here and you will learn a lot.
I'm one of the members here who still does a lot of traveling. My husband is a military man, and I love to go with him on trips. Also, our kids are scattered all over the US, so we fly fairly often to visit kids and grandkids. I'll be flying to Denver and to Little Rock in September to see two of my daughters and two grandsons. I've even flown to Japan and to Greece in the past few years. I haven't tried those socks, but I do make a point of getting up and walking around often while flying.
I've had to slow down some because of my AI issues, but I refuse to let it stop me from getting out and doing as much as I can.
Start taking the Plaquenil, and I'm sure that you will figure out ways to cope.
Welcome to the site!
I started on plaquenil as soon as I was diagnosed, it takes a little while to work but most of us will be on it forever. I personally haven't had any issues with it and it appears to have been working well over the last year or so.
When I was first diagnosed, I went to see a naturopath to see whether there were certain foods that I could eat that would help with reducing my need to take medication. Quick lesson learned...you ALWAYS need your medication. Healthy eating is obviously good for anyone but not as a replacement for any medication.
I still travel a lot - I've had multiple PE's and DVT and am on warfarin for the rest of my life. I recently just flew to Europe (from Australia) with no issues with the flights. I always wear my anti embolism stockings and drink heaps and heaps of water. Though the doctors will say that I'm at a lower risk than most people on the flight because of the anti coagulation medication i take. One problem I have had though is with travel insurance. I couldn't get any travel insurance that would cover me for my pre-existing condition. I have life insurance and salary continuance insurance but both of these I've had since I was 20 (before I was diagnosed) so luckily I am covered. Most people aren't as lucky to be insured after a diagnosis such as Lupus, or if they are it means massive premiums.
I also work in a pretty stressful job where I work about 40-50 hours a week. I feel as though I am coping well with it but recognise the times when I need a break, and I've learned to take that before things get bad. Having a boss that understands about your diagnosis and what it means for you as a worker is one of the most helpful things at work!! But I also have a supportive partner and family who all do a lot of things for me when I have those days when I cant do them for myself. Getting a diagnosis of lupus doesn't necessarily mean that all things change for the worse.
All I can say is that I wish you all the best.