Trying to find the balance
I am not much one to reach out to strangers for answers but my family and friends are having a problem adjusting to me having Lupus and I need to work through things.
I carried the blood draw lab order from my doctor in my purse from Sept of 2005 until January 2006 because I just didn't want to know. I did OK getting by and developed trust issues with doctors because they always said there wasn't something wrong, they couldn't find anything, or wanted to put me on a drug to treat a symptom without finding the cause.
One doctor, when I asked about what to do about my Raynaud's Syndrome because it was starting to get so the episodes were almost daily during the winter told me to stop smoking which would have been reasonable but I never started, I drink alcohol about once a year and never have done recreational drugs (all of which she also mentioned I should stop doing three different times in 15 minutes). In the same appt she prescribed anti-anxiety drugs because she felt I was to hyper about her recommendations. I stopped going to a doctor unless I was sick with something obvious for three years. Why bother? The next doctor I poked my neck out of my shell to ask for help from literally patted me on the leg and said, "Sugar, you just need to relax, lose weight, and focus on being happy." I literally gave up doctors that day.
My mother and grandmother moved to be near me and started going to the same doctor. He was good to both of them. Listened and made them feel heard. I decided to give it a try. He did listen but instead of walking down the hall to the lab I walked out the door. I was fairly certain by this time I had lupus or something like it from an article I had read and just didn't want to deal with any of it. What if the results came back negative and I still didn't know what was wrong? Anyway, I finally went in and he said that the results were SLE Lupus.
A long ramble to say, I need help. I need to know how to handle some of the stuff he tells me. I have not been able to make myself go to a specialist because I actually trust this doctor. He has me come in every couple of weeks and we discuss the next step (I am a bit resistant to my new limitations so he spoon feeds the info out a little at a time). I am apparently having a flare-up and he says it doesn't help that I am a princess and the pea type of girl. I either want to find another bed to lie in or fix the one I sleep in.
I have three questions at the moment:
I feel like I have someone pressing a hand on my chest every second of the day and that someone is pressing a finger on my throat. I cough once in a while but not continuously. Occasionally there is pain in my chest but mostly it is just pressure. Has anyone had this happen? It has been going on for a month and is driving me crazy. It is even in my dreams.
My doctor is a general family practice doctor. Am I endangering myself to just go to him? I trust him and he promised to send me to a specialist when he felt any alarm. My parents want a specialist, they are hounding me. My husband feels no alarm. He says he likes what my doctor has to say.
I made the mistake of reading information on the internet and found some pretty scary wording. My doctor says that I currently would be classified with mild to moderate symptoms. The bit of information online that freaked me out (and about made me choose to just forget about making life adjustments and ignore this lupus stuff) was about kidney failure. It said most people with lupus don't know that their kidneys are failing until it is too late. Is this true? (My doctor has been out for three weeks because his child has cancer and he is understandably taking care of his own family. I went to one of his associates and she was nice but looked blank and gave me a prescription for glorified tums.)
I know this is long and rambling. I apoligize. Needless to say, I now overexplain myself when dealing with medical issues. I am still questioning the diagnosis. How does he even know it is the right disease?
Believe me, most of us truly understand your fear and your trepidation. Also, I think we have all had to deal with doctors who knew nothing about Lupus and so dismissed us as being hypochondriacs or told us that it was "all in our heads!"
Your doctor sounds wonderful and caring..but he is not a rheumatologists and those are the doctors who specialize in our disease. If your insurance covers it, you should get the referral to the specialist.
Lupus is a very difficult disease to pin point because it affects each one of us so differently. Right now, you are in the mild to moderate stage. It is now that you should start treatment, make the appropriate lifestyle changes and take care of your body so that you do not progress any further. It is now that (with treatment ect.) you may have a chance of acheiving remission.
Some things that you should know: You are feeling a bit depressed right now. That is quite normal after learning that you have lost your perfect health. Go ahead and grieve for that loss, it is a significant one and you are allowed to be sad, angry and confused. But, also remember, there are so many of us who have lived with this disease for many, many years and who manage our health while living a relatively normal life for many years. You will need to make some lifestyle changes: avoiding red meats, eating more fresh vegetables and fruits, taking recuperative rest periods when you feel fatigued, avoiding the sun and using sunscreen everytime you go outdoors, asking for help when you are unable to complete a physical task, organize your days and your tasks so that you do not over work or over tire yourself and - most important - take your medications as prescribed-learn about Lupus so that you can take control of your health and your health management.
Now, I also want you to know that, no matter how you feel; what you are going through, how others respond to you - YOU ARE NOT ALONE!!
Someone here will have gone through what you are going through and will be able to offer you answers, support, comfort and understanding. Remember that we are here for you whenever you need us.
I wish you the very best
Peace and Blessings
Saysusie is right. You do need to find a rheumatologist. My rheumy told me that some people are mild enough that they don't need any treatment except making some lifestyle changes. However, even a patient that mild needs to see a rheumatologist regularly to monitor their health. You need to learn as much as possible about lupus, even if that means reading scary stuff. Just know that there are a lot of extremes put out there and you have to learn how to filter the information. I got scared when I read that most people don't know they have lupus until their teeth start falling out. Of course I went to the dentist right away...he said my teeth are in great shape and I just need to take care of them and see him three times a year instead of two times per year like most people. So, you see, there is a lot to be scared of...but the more you learn the less scared you will be. You have to learn how to take care of yourself and know your limits.
Regarding the kidney failure, it is a scary thought. Take care of yourself. Don't put any more strain on your kidneys than necessary. You'll feel better if you learn what the signs are of kidney problems, like foamy urine. Don't overanalyze things and symptoms too much. It will just stress you out and stress is a big trigger for flares. I have learned that if I write down my symptoms or weird episodes I can forget about them until I see the doctor again. That way I am not constantly dwelling on them and I feel a whole lot better knowing that I won't forget to bring it up with the doctor because it is written down.
You aren't alone. We all have times when it is difficult to find balance. I was diagnosed last December and I still haven't got it all figured out. I am not sure I ever will, but I know that my husband loves and supports me, and that I am doing my best to stay as healthy as possible. Knowing those two things is what helps me keep my head up! You have to take one day at a time.
I can see what you mean about a specialist but it is kinda hard to think of talking to another doctor and not knowing if they will believe me or just push a series of drugs on me. I watched my grandpa deal with lupus for decades and know that it can be managed.
I have already begun to add more fruit in. I am a veggie girl but not so fond of fruit. How much red meat is ok? Is venison on the red meat list as well. It is pretty lean. Is it the saturated fat or something in the redmeat? I read that alphalfa (sp?) sprouts are pure evil for those with lupus. Is this true? What about sugar? Does it have to be cut out?
My husband was wonderful and immediately had me hire a housekeeper. He said he would rather have me expend my energy on the family rather than the house. I am also getting weekly massages.
As far as the depression goes, I am realizing how much of the stress in my life is because of other's and their issues. I am the hub so to speak of my friends and family. I am a stay at home mom and most all work so I am the person someone calls when they have to chat about something. It is common to have 16-25 people at my home. Then my niece who lives with me is going through a horrible event...Grandma fell and broke her hip...two family members died...the list is forever. I am realizing that I must separate from the stress of empathizing too much with everyone. I have to find the balance of loving and caring for them without letting it drag me down.
Hi Michelle :lol:
The issue with red meats is the protein. One of the things that Lupus does is to attack the proteins in our bodies, so we must limit the amount of protein that we give it to attack.
A rheumatologist specializes in connective tissue diseases, such as lupus, and will most likely not be a doctor who does not believe you or who dismisses your symptoms. They are very aware of the many diverse symptoms of lupus and are genereally up to date with the most effective treatments. It would truly be in your best interest to have a rheumatologist as your primary health care doctor. Once you are aware of your disease and how it is affecting you, you can make informed decisions (with your rheumatologist) about your treatment and medications. Learn what the medications are for, what their side effects are, what the benefits are and participate with him/her in determining what drugs you will and will not need!
You are right in taking steps to eliminate stressors in your life. Stress can have devastating affects on Lupus patience and, many believe, can be the root for lupus flares and relapses. It, therefore, becomes essential that you start taking time just for you and your health and start backing away from those things that cause you stress and anxiety. Taking care of you is one of the most important things that you can do with this disease! You are lucky to have a husband who is understanding and supportive. But do, also, educate him about Lupus so that you can both make this journey together in a loving and understanding manner!!
I wish you the very best
Peace and Blessings
Hi michele! Don't get freaked out about the kidney issues. So long as the dr. treating you does periodic blood work and urinalysis, you'll be on top of your treatment. My rheumy runs a complete blood work up on average every 6 months. (If issues come up in between, more often). To my knowledge, there is no "lupus" diet. I have read, though about the alphalfa not being good though (like you mentioned) and also certain herbal remedies are not recommended.
I get what you're saying about going to this doctor, but my gut feeling is that you would be in better hands with a rheumatologist. The only meds I am on at present are Plaquinil and coumadin (I also have antiphospholipid syndrome). It is my understanding that Plaquinil is a great medication with few negative effects that I've read can sort of 'prevent' organ involvement, or at least slow the process. You will read that you'll need to have regular eye exams as there is possiblity for problems from this. I can tell you that my eye dr. has assured me that they (the group) has NEVER encountered anyone who has had problems with Plaquinil destroying their eyes. Remember to notice how old the information is, because some of it out there is pretty out-dated.
I could go on, but I don't want to ramble. Hang in there, and, like you I have a very close family. I find I share the stress of their lives as well as my own and it can take it's toll. I am trying to take a step back - I am involved, but I try to set a limit to how much time and energy I am able to give to stressing about 'other's problems'. It's very difficult, but for the sake of your health, it may be necessary. Good luck! Don't give up on the doctor thing, you'll find the right one! Ask around for recommendations. Keep us posted!
I agree with knowledge being power.
Thank you Mitch and Saysusie.
I talked to my husband and he says maybe the specialist thing would be good. I just wish it were all more cut and dried you know. Do this and you will get these results. I have a follow up appt. for my doctor and will ask for a referral then.
I know I have been dealing with this for eight years. I can see it now that I know what I have learned so far about the lupus. My grandfather had it and one of my great aunts. I just didn't know because for them it was just that way. I knew they lived with chronic pain and both were very protective of their sleep. Both lived long and healthy lives.
I am afraid of medications. I am so sensitive to most drugs that I am often put on child dosages and just am generally resistant to taking them as I find the side effects worse than the infection, pain, virus, etc. I know I am physically past that though. When I cannot breathe right and my children are asking me if I feel ok it is time to relent I suppose. I am the type that passed several gallstones and finally realized maybe there was a reason that most people go to the hospital for that when my doctor was horrified that I hadn't. I even sent my husband out the door and took care of my three week old son during an attack. He was an hour away before I realized maybe I was in too much pain to cope with a newborn.
What is this about the sun? I know that it comes up in all of the articles I have read on Lupus but I don't have any sun issues. My dad's family is paranoid of skin cancer so I was firmly taught to not lay out in the sun but I feel good on a sunny day and spend time outside when the weather is nice. I always wear sunscreen and a hat because I want to age well and I hear my dad's voice in my head lecturing me if I don't. I tend to seek out the shady areas. If it hasn't been a problem for me should I limit myself?
I apoligize for being long-winded. I think it is helping with the depression thing just to write these emails. I find that I feel a bit more ability to put things into perspective.
Hi Michele! Exposure to sun can trigger a flare. Lots of lupies feel very ill after spending even just a little time in the sun (headache, nausea, dizzy, fatigued, rash to name a few). Not everybody is as affected. I can be in the sun (sorry to admit, without sunscreen lots of times!) And I do not have much of a problem w/ rashes, etc. I do get dizzy and nauseated and tired sometimes though. You seem to have the whole drill down pat, though. You will probably stay young forever having been taking care of your skin early on!
What about our teeth falling out? Why does that happen? I haven't heard that one before.
Thanks Mitch. I guess that you take all these different things on a person to person basis. I don't get dizzy and seem to perk up in good weather. Of course, I live in a particularily rainy part of the Pacific Northwest. I don't do well in the heat nor extreme cold.
I read on some of the other forums in this site and it seems that I should count myself lucky. I may feel rather icky for me with symptoms that are slowing me down but others are in so much more pain and so very much more limited. It makes me count my blessings. I just miss being more productive, you know? I was planning on painting my living room and it is hard to comptemplate doing that when the laundry seems to wipe me out.
I hope you are feeling good.