Need to Vent to friends who "get it"

[jenny52]

Hi, I am a new member. This is my first whine/ post. I have been diagnosed with Lupus/Fibro for two years. I gave up a thriving massage therapy business. Just could not do 6-7 massages per day. I've done that for 20 years. I love it. I love my clients. I'm sure you all know the feeling. Six months after my diagnosis, my husband of sixteen years committed suicide. That of course regressed my concerted efforts to get better. I am still struggling to get my life, especially my house back in order. My whine is:I get so discouraged because I am not physically able to do much at one time. The legal papers that have piled up since his death is enough to bring on a panic attack! I've had one major tag sale and need to have another but who has the energy? I have attempted to start going out with friends but never know if I'll have to cancel at the last minute because of IBS ,fever,etc.Anybody know that feeling? And so very few people really KNOW how it feels and don't understand why "getting out would make you feel better". I do get out when I can..but I am finding this is a very isolating condition. I'm thinking of writing up a flyer explaning,as best I can,what your life is like with these conditions. Some friends and my family do understand. I have no children. I have a precious 'angel dog' that has been with me through thick and thin!Today I have a low grade fever and mega fibro fog.So all I want to do is sleep! It's a constant battle isn't it? But there's so much to do!! I am posting on one of my lowest days...I'm not always so 'whiny'. Just hoping to get a response from someone who understands from the core of their being.
I am also struggling with the fact that I would like to meet someone to go to dinner,a movie,etc. and then I think WHO would want to go out with someone who's not "up" for fun. I know I am much more than this condition that has chosen to move into my body,but again doesn't someone share the same thoughts? Would love to hear from you.
Jenny52

[Carolyn, Director]

Hi Jenny....I am so happy that you've posted to the forum and you are always welcome to vent here anytime. Sometimes that's really all we need...get it off our minds and out of our systems anyway we can. Frustration can build up and take some bad avenues that we should stay away from.........and darn if it doesn't take a lot of our energy too. And energy is something we have to use wisely by prioritizing everything we do from our daily chores to some fun time for us.

I have over the years felt everything you are feeling now. I've been widowed, but not in the tragic way you've had to deal with and I can only imagine how hard that must be to cope with. We as women so often have to be super-woman-strong to cope with the things life throws our way. People dealing with lupus and fibro alone have so much to cope with, let alone a family death thrown into the works.

I can offer one hope for you, and for all who have chronic illnesses and that is: almost all will have flares that not only get tougher to work through, but will also diminish into an illness that is easier to handle. The flares come and go....it is said that you should expect at least two fairly bad flares a year, and many will only have moderate type flares. That's the average....and often we don't fall into that average area. I personally went thru about 10 years of severe to moderate flares, up and down continuously. And the 20 years before that I didn't even know I had lupus as no one had been able to figure out just what my problem was....I was treated for individual happenings that came and went...more mild to moderate flares during that period.

Now here's the best thing ever and it DOES happen to those of us with lupus...there is always the possibility of remission. No cure with this stuff, but remission with or without medication does happen. And that is where I am at today. I have been in a remission for the past 5 years. Although I will tell you the past two months have brought some symptoms that may be letting me know that it's active lupus time again. I am in the process of waiting for numerous lab tests to come in.

I do understand everything you are feeling and it is not a terrific place to be, but there is always hope. I truly hope that you have good insurance, a good doctor and a good medical team.

Please keep in touch and let us share it with you.

[JuliaRN]

Jenny
You made a good first step, reaching out to others with common health issues. You will find that what you are experiencing is normal, for all of us that post here.

I don't have lupus(yet) but do have other autoimmune disorders which can zap the life out of me. If did for 5 yrs and still have "days". Today for no known reason, I had to just lay down for the afternoon. (usually I have this feeling if I over did the day before, but I didn't!!!) My aches were so severe.

The loss of a spouse/ significant other can cause problems (emotionally and physical) for each of us. As Carolyn mentioned, what you experienced is beyond the norm.. ***HUGS***

We are here for you and are so glad you found us..

Now don't be a stranger... posting about what's going on helps so much...

[Carolyn, Director]

So Jenny........what happened to you? Hopefully you no longer need to vent and all is better, but if it isn't....we're here!

[Carolyn33]

My dad has something. I think it is Lupus, and for a while he thought it was Fibro, but whatever it is, he has chronic pain. Some days it is worse than others and he can't even get out of bed. He frequently has really bad headaches. About two years ago he contacted the Mayo Clinic (I think in Minnesota?) And they told him that there was a couple year waiting list to get an appointment. He spoke with someone that told him that he could fly back there and sit on standby in case someone missed an appointment. He was able to get in after only waiting one day. They saw him and did tons of tests. After about a week, they told him basically that he has someting, but they don't know what it is.

Is there anywhere else that could check him out that would be better than the Mayo Clinic?

[JuliaRN]

Carolyn
Where is your Dad located at?? There are other places besides Mayo.

[Carolyn, Director]

Any good rheumatologist or endocrinologist can test and diagnosis for lupus. Many university medical schools who have departments in rheumatology would also be able to test and diagnosis for lupus. Lupus can often be very illusive when it comes to getting a diagnosis and can be misdaignosed. I was told I had rheumatoid arthritis, possibly MS, all before I recieved a firm diagnosis of Systemic Lupus....I was in my early 40's at the time and it could be traced back to when I was 18 and possibly as early as 8. Often a few test must be run, and then the doctor will take those to decide which ones to run next....a complete hands on examination plus a good medical history is important to go along with the labs. Don't let your dad give up....often you must advocate for yourself to get a diagnosis and the help you need.

Julia asked where you dad lives, and I would also ask, "does he have insurance"? Sometimes when we have these chronic illnesses, to get good care we do need to have good insurance....it's a shame but that's the way it is right now. Does you dad get online himself? If so guide him to our website and have him check out the many articles under the lupus category, another very good place for information on lupus is The Lupus Foundation of America, and they too, have a website. However, it is possible that he may have something other than lupus and that is when the firm diagnosis comes into play.

There are many good places you can go without having to wait for an app't at the Mayo Clinic....but know that often the best rheumatologists have a 6 month waiting list for app'ts too. Often if your PC (primary care doctor) refers a patient to a specialist (such as a rheumtologist, etc.) he will be able to get in sooner.

Please keep in touch, let us know where you are, and hopefully we can direct you better.

[Carolyn33]

He is in Washington State. He does have good insurance luckily. My mom got a job at the local public school just so they could get insurance. He had been to probably 30 different doctors over the last 10 years.

[Carolyn, Director]

I'm not very familiar with Washington services, but I did live in Oregon on the coast for several years until my lupus went into remission...at that time we decided to sell out and go full timing in our motorhome to enjoy life as long as possible. There's always the strong possibility the my lupus will once again go into action which will slow me down again. Anyway...I do know that St. Vincent Hospital in Portland has some excellent rheumatologist, in fact that is where our nurse JuliaRN has her medical team. Also OHSU - Oregon Health Science University has a highly rated rheumatology department.

Now this is all information IF the problem turns out to be lupus or autoimmune system problems or arthritic problems. If you want to go further afield when it comes to lupus....Dr. Daniel J. Wallace at one time was the foremost authority on lupus and he was in the Los Angeles area....I will admit this was 15-20 years ago. He co-authored the leading text book on lupus and did have a practice in southern California. I would have to do some research to see if he has retired or is still in active practice. He also has a book out that you might be able to find in your local library, I know that it has been on the shelves in the major book stores and is worth having if you do have lupus of any type. I can find you other leading lupus specialists if you are interested...

I asked you about the insurance as it is readily known that lupus patients with good insurance do much better than those with poor insurance or none at all. It often takes numerous specialists besides a rheumatologist .... lupus can attack any organ at any time, or more than one at a time and when that happens it usually means a new specialist is added to your medical team. I've had an eye specialist, kidney, heart, liver, and gastro-intestinal specialists...they're not cheap nor is the medications.

I hope this has helped you a bit.

[JuliaRN]

If he is near the sound, U of W Med School would be a good start. Who has he seen in Wash?? If I can find out what area in Wash, I can contact my rheumy for further info.