New guy here, the love of my life has Lupus
My name is Scott. My best friend/love of my life has been battling Lupus, Fibro, and Thyroid cancer for the past 2 years. The thyroid was removed now she is taking radiation treatments for the remaining cancer while battling the above. All of this being a single mom of two teenage kids....
She has some great days and some really bad ones. She refuses to slow down and her activities often cause her flare ups. She turned me onto this site but I don't think she has registered yet. I wish she would.... I joined because I want to learn more about the diseases she has and how we can maker her life better with increased knowledge.
Anyways, that's my story and that's why I am here.
Welcome to you and to the love of your life. It certainly sounds as though she has a lot on her plate. I agree with Mari that she is lucky to have someone like you supporting her through it all. Many people with lupus seem to be Type A personalities, always on the go...unfortunately it is the great catch 22 and we eventually have to slow down or our body slows us down. Guilty! (raises her hand). Anyway, welcome to WHL!
Thank you for the warm welcome.
I couldn't agree more on the Type A personality. I tell her over, and over to slow down but she just keeps going until she crashes. Her current doctor is in my opinion is USELESS!!! No prescriptions at all just tells her there is nothing that can be done. REALLY? Nothing? Her new doctor isn't able to see her until Sept. 2nd. My gosh, that's a long ways away. There must be thousands of people with Lupus here in the Sacramento area for it to take 3 months to be seen..... As for support, her family has all but turned their heads and tell her she should exercise more. Yeah like that is what she needs more physical activity. Or the say she should get out in the sun. Well the sun causes itching and rashes on her skin in just a few minutes depending on how hot it is out. She had to cover up her legs in the car the other day because 4 hours of indirect sun caused the rash to appear. I have to support her... I love her more than anything in this world and will never leave her regardless how sick she becomes. (hopefully she gets better )It took me 43 years to find the woman of my dreams and I am not leaving her side. But this disease is SO frustrating..........
The Following User Says Thank You to Tanya's guy For This Useful Post:
Rheumatologists are hard to get appointments with, but Sept is too long to wait. Any doctor who says that nothing can be done for lupus is incompetent! That's like saying there is no treatment for diabetes. Can you do some research and try to find her a better PCP, preferably an internist? They should be able to get the ball rolling with labs and at least plaquinil. If Tanya is better (on meds) by the time her rheumy appt rolls around, then that is valuable information for the doctor. It seems to me that radiation treatments might make lupus worse, because it is damaging cells. UV light damages skin cells, which triggers an autoimmune reaction, so it makes me wonder if radiation would do the same. Not that she could stop treatments, but she certainly could be started on meds to treat the lupus.
Welcome! Tanya is very lucky to have you in her life. If she is a person who needs to be in control, all her illnesses must be torture because they take away some of that control. Maybe she will have to discover that she has to slow down the hard way. You are asking her to do that without results - maybe it's a control issue and when you tell her to slow down, she has a knee jerk reaction the other way? Maybe when you get her a gift, it could be something that will naturally encourage her to slow down - like a Kindle, a movie she really enjoys, a massage, a body pillow, etc... Don't say anything about her taking it easy when you give it to her, though. One other suggestion I have is to get Tanya some lightweight, fashionable sun protective clothing. There was a thread her not too long ago where people talked about sources.
WOW! 3 hours into this and already a wealth of fantastic information. Thank you so much!
Hi Scott, I am so glad to have you join this wonderful group of people. I have a dear man in my life who really helps me be able to relax as I am a hard worker in my soul. The disease has forced me to treasure my time and guard it more carefully. There is an article on the internet called, "The spoon theory". Perhaps this would help both of you.
Here are the ways my boyfriend helps me cope.
1. He helps me with chores.
2. He helps me remember things when I can't remember.
3. He massages my muscle spasms.
4. He makes me meals or takes me out when I am spent.
5. He reads all he can to support me at doc appointments.
6. He stands up for me when I'm sick and my son gives me a hard time.
7. He asks me,"How can I help you tonight?"
8. He goes to the ER with me.
9. He gets me flowers when I am tearful.
10.He tells I'm beautiful every day even when I know I am a mess.
As for the doctors not treating Tanya, I am speechless. Search with every ounce of knowledge you can muster and find someone sooner. I travel 2+ hours to see a rheumy who treats me well. I have had some that did not "get it".
Keep her out of the sun. It causes our autoammune system to go into hyper drive. It then hits my organs. I didn't realize all I could do to protect myself until I joined this awesome forum. Welcome. I'm so glad Tanya has you. Give her time to learn to slow down. It took me a few hard hits with the lupus to say, "okay I need to slow down and say no sometimes."
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One other thing...
You might want to call the Rhuemy and ask for her to get placed on the cancellation list. Most doctors have a list of people they call if someone cancels. It can change an appointment that is 3 months away to a week or so. It is worth a shot
Success is not final, failure is not fatal: it is the courage to continue that counts.
Yeah she did that. Such good info here. I hope she logs on and adds her $.02 You guys are great. LBH, I try as much as I can to do things for her but logistics and kids have a way of putting a damper on things. This is a hidden disease. You can look at someone who has Lupus and never know that they are in pain, and sick. And yes, The radiation treatments do sometimes cause issues too.
Good Evening Everyone it's me, Tanya....
This site has put my mind at ease to know there are so many others out there who experience what I do and have for years. (Looking back, since I was a child). Scott has been my rock and without him these last 3 years I am not sure where I would be. He is a HUGE support to me.
It has been a LONG 3 years, 15-17 off and on. Everything from sun sensitivity, pupil dialiating for no reason, high blood pressure, miscarraiges, migraines, dizziness, nausea, PAIN, PAIN, PAIN, tachachardia, fatigue, depression, anxitey, hypokelimia, you name it......
I have recently changed PCP's and requested a new Rhuemo due to my currents lack of 'proactive' or 'reactive' actions. They both have told me everything from, " Its just depression" to "I can't do anything unless you're in a flare" ( Though did nothing about the flares) Tried just pumping me full of antidepressents and pain meds. I saw 3 Nuerologists, Opthomalogists, ENT's, PCP's, ER visits....etc....and finally the one Nuero who ruled out MS said " If I were a betting man, you have Systemic Lupus". Though and Internist 10 years ago suspected but the ANA came back Negative and he dismissed it. I have had 3 positive ANA's in the last 3 years and 2 negatives.
My life STOPPED literally OVERNIGHT Oct 31, 2008. I went from working as a Project Manager of a Large Printing Company, Playing Horse Polo 4 nights a week, jogging 4-5 days a week, team mom, class mom, taking care of a house, family, you name it! Yes, I am a very Type A and independent as I haven't really had, until Scott, anyone to depend on. I recieve my SLE diagnosis Sept 09 and was then diagnosed with Stage 3 Hurthle Cell Thyroid Cancer in March 2010. Three Surgeries, 2 rounds of chemo and due to the spread of tumors to my Scapula and Lung another round of Radiation. Which all have flared my Lupus something FIERCE!
I have never NOT worked. Somehow in all the mess I don't ride horses much anymore and have pretty well reitired mine. I poured myself into my show dogs and started a small grooming business from my home to keep sane. It is hard as SSDI has denied me 2x even stating my med records show SLE, Cancer, Hypertension, etc. I am now mainly financially dependent on other people and I do make with my dog business some to support my 2 teenagers and myself.
My new Rhuemo can't see me (UC DAVIS ) until Sept. I figure I will call in a few times a week to check for cancellations as I am extremely tired of being so sick. Out of 7 days a week I am lucky to have 3 good ones. Of course the Radiation isn't helping but I have 4 more treatments and my bloodwork/cancer markers are way down so optimistic I have beat it for good this time. I am sure to stay out of the sun, heat and have 'somewhat' learned to rest when I feel like I'm crashing but, I am in a position I "HAVE" to keep going as Scott is 60 miles away with daughters of his own, house of his own and job. My family keeps blaming the cancer and thinks life just needs "sunshine and exercise" and I'll be cured. Most of my good friends have disappeared as well as the remaining part of my family. So, I do what I can and have to. Without Scott I don't know what I would do. He has been so wonderful to myself and my children. He is truly my ROCK and I love him so deeply most cannot fathom how it TRULY feels. I just want to FEEL good more than BAD for HIM! For US! For our Children!
Hope to meet you all and am able to bounce symptoms ideas, etc....any suggestions are welcome!
Thank you for reading! For this site!
The Following 3 Users Say Thank You to wash&wag For This Useful Post:
Gizmo (06-23-2011), Peridot20_Gem (06-23-2011), tgal (06-23-2011)