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Tanya's guy
06-22-2011, 04:20 PM
Hi all,

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.

tgal
06-22-2011, 04:31 PM
Hi all,

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 WHL. We are really glad that you are here. She is very lucky to have someone as supportive as you at her side. I can tell by your post that she has a lot going on and we all know how hard that is. Please make yourself at home. Feel free to look through the old threads or start new ones if you wish. There is tons of good information here and if you have any questions just feel free to ask! I look forward to getting to know you

bunny28
06-22-2011, 04:51 PM
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!

Tanya's guy
06-22-2011, 05:10 PM
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..........

Gizmo
06-22-2011, 05:48 PM
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.

Tanya's guy
06-22-2011, 05:59 PM
WOW! 3 hours into this and already a wealth of fantastic information. Thank you so much!

lovedbyHim
06-22-2011, 06:45 PM
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."

tgal
06-22-2011, 07:43 PM
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

Tanya's guy
06-22-2011, 08:45 PM
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.

wash&wag
06-22-2011, 10:45 PM
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!

steve.b
06-22-2011, 11:41 PM
hi scott and tanya.
i like quite a few here suffer both lupus and fibro.

welcome, please ask questions,we will try to help you both learn.

steve.b
06-22-2011, 11:56 PM
there is a thread in this "new members" section, called "what next".
in that thread i have added some information about fibro that might help.

lovedbyHim
06-23-2011, 03:38 AM
Hi Tanya, I'm so glad you joined us! I have SLE, fibromyalgia, and Hoshimotos thyroiditis. I get so tired I can hardly stand it. I keep wondering how long I can keep working, as I fall asleep at the wheel sometimes. I'm so sorry to hear you are so sick and have been for a long time. I pray you get in quicker and that the doc treats this seriously. We all know how it feels to be treated like we are hypochondriacs or just depressed. I once told one of the docs in the ER, "Ya'll are making me depressed!"

Read all you can, write every symptom down and keep pictures, records, bloodwork results,etc.

Again welcome to a great group.

Gizmo
06-23-2011, 06:02 AM
Welcome, Tanya! I'm blown away that you can't get SSDI with all that you have going on. I've heard that it's worth the money to get a lawyer who specializes in SSDI. They usually don't get paid unless you get a settlement - and I believe that if that happens, the settlement is retroactive to when you applied, so you do get a lump sum that you can pay the lawyer from. I'm not a lawyer, so don't quote me on that.

My Dad is a "sunshine and exercise" kind of guy. Once he sent me out to run off a migraine when I was half blind with pain and lights! With him it was definitely denial - it was the only way he could cope. He has improved over the years, but every new health issue in the family gets shrugged off by him at first. If you live in at big city, the Lupus Foundation might give information classes for patients and their families. A little education might help.

I hope you and Scott continue to participate in this group. After all you have been through, you must have alot of information you can share with us, too.

Peridot20_Gem
06-23-2011, 07:18 AM
Hi Scott,

Welcome to WHL and i'm abit slow on replying to your thread about Tanya but it's lovely to know she's now joined.

I do hope you and Tanya get helped very much from the members as we're all suffering the same in so many ways and your support and love goes along way and wanting the knowledge of what she's going through.

Hugs to you both Terry xxx

Peridot20_Gem
06-23-2011, 07:22 AM
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..........Hi Scott,

I do respect you in so many ways for standing by the woman you love, as Lupus is such a difficult disease at times and can completley ware you out but you seem so contented in pushing forward with Tanya through thick and thin...well words are speechless. xxxx

Peridot20_Gem
06-23-2011, 07:51 AM
Hello Tanya,

It's lovely to have you with us after your (rock) scott posted about you and your situation...good on ya for joining and it will help you so much in learning the condition and what may occur in the future.

Well in your 3rd and 4th line alone you've been through so much...Lupus causes miscarriages and can even cause a woman not to get pregnant as i'm one on the list and all the rest you've mentioned comes accompanied with Lupus it's such a testing disease.
Tanya you need to also be seeing a dermo about your skin concerning a flare/flares as steriod based creams are excellent on removing those but once a course as been finished you need at least 6mths break in between each one as they're also an aging cream and they're pushing you for ant-depressents is because if you are depressed Lupus thrieves on it so much and makes you feel your symptoms alot worse.
The reason for your bloods showing different readings on your ANA and any other bloods you have done is lupus fluctuates your bloods and can give off false readings, so anything showing negative could be actually positive, that's why bloods keep being taken.
You've gone through alot with surgery's but SLE can cause issues with the organs to the body also, i've just devolped a tumour on my liver and they reckon my immune system wants surpressing bad to slow it down, so with what your going through and the SLE going hypo no wonder you feel like you do.
Well i do admire you for at least going at different subjects to keep you going but lupus does ware you out and keep on at your rheumo to get an appointment sooner, it's not good enough with how ill you are. My dermo goes mad because my rheumo leaves seeing me for 6-8mths at a time and his words are (does'nt he realize you have sle) lol.
Yes keep out the sun, unless your covered well and even with sunblock and go in the shade and if you feel the slightest irritation get out of it.

Well you do have an excellent partner by how you speak and scott does also and that's very important, as we all need someone.

Please keep we updated Tanya now you've joined also.

Hugzzzzzzzzz you way Terry xxxx

Tanya's guy
06-23-2011, 09:39 AM
GREAT! Tanya chimed in. I can tell you this I had tears streaming down my face last night as I was reading her post. My GOD, I was crying like a little girl. She hasn't received support like this ever! How wonderful and what a great bunch of folks. I'm sure you will be hearing much, much more from us. In fact, I guarantee it.

tgal
06-23-2011, 10:31 AM
Hi Tanya! Welcome to WHL! We are so glad that you joined us and we completely understand what you are going through! Although radiation is not a treatment of Lupus Chemo is so we even have an idea about that (not to the extreme that you are though).

Lupus is a horrible disease. I too can look back to my teen years and see that I had it then. The good news is that there are things that can be done to help make you feel better but, as you know, it doesn't go away. You are not lazy, crazy, whimpy or whatever other name they want to give you. You are sick and you need to learn to slow down. I know how hard that is because it feels like giving up and giving in. That isn't the case. It is simply taking care of yourself so you and your wonderful rock can enjoy more of life.

Social Security is a nightmare in the states. You can't be working and apply but it takes forever to get. I was one of the lucky ones as it only (yes ONLY) took me a year. I too would suggest an attorney. I tried without it at first but as soon as I hired one I was approved. Someone above me stated about the attorneys not getting pain unless you win. That is true. The law does not allow them to be pain unless you are. I now tell you all of the negative things to tell you that it was the best thing that ever happened to me. I won't bore you with that story right now but if you ever want to discuss it let me know.

I really am glad that both of you found us. Please make yourself at home here. You are now part of our WHL family and you will never be alone.

wash&wag
06-23-2011, 11:45 AM
Thank you all so much for the warm Welcomes, Hugs and information.

SSDI is a nightmare and I knew going into it. I applied almost a year ago and yes went through a lawyer however, I am looking to switch attorneys due to he not being proactive on the case either.

It has been a long hard road and taxing all the way around. I am SO happy to have found this site and all involved. I am looking forward to it as it truly brightened my day today and was somewhat theraputic to write my short versioned story.

Thank you all again and looking forward to many more!

Also, I sent my PCP a message regarding a trial med(Any Suggestions? for the first one to try) (I have tried Lyrica but it didn't do much for me) before Sept. and keep a daily diary of my symptoms already, I will start keeping photos for the Rhuemo to see as well.

Yes, my kidneys are affected by my flares as well as my heart. Then the Fibro varies day to day on the level of pain or tingling. But always wake up about a 5-6 on the pain scale daily. I am learning to slow down (some) and not be so OCD about things getting done. It is so hard to do though.

Thank you again all and I will talk to you soon!

lovedbyHim
06-23-2011, 12:30 PM
It sounds like you are doing a fine job of trying to keep from over doing. I too have a strong work ethic, but for two days I had to look at my dirty dishes, because my arms & neck hurt so badly. I just had to lower my clean standards, use paper plates sometimes, I even hired the little neighbor boys to carry bags of potting soil for me. They were worth every penny. I'm.learning to ask for help, which is the last of my pride to go (grin). The doctors took the first of my pride!

I hope and pray you get SSDI. I have helped several of my clients apply and get it. The thing that seemed to help them the most was when I wrote details as to what I witnessed as I worked with them in my mental health program. If we could get good docs to validate that we are a mess (smile), I believe it would help. I live in PA. I don't trust their docs 1/2 hr diagnostics. If you are denied appeal. Trust me on this.

Keep up the good work!

giggle
06-23-2011, 02:55 PM
Hi Tanya and Scott!

: )

Welcome, I hope we can ease your burden, even if all it is, is to listen to you vent and get stuck into some rheumy bashing lol

I too show and breed dogs! : ) It is a fantastic hobby for someone that likes to keep busy ALLLLL the time.

Like a lot of us here, I too am going through a bad doctor run... mine has lasted six years. And for this reason, I have become a great advocate of putting your foot down and speaking up for yourself. I let it all go and ignored my illness for nearly 6 years... I just kept on keeping on... the consequences were this... I now have a tremor that looks to be permanent and severe cognitive decline. Soon enough I wont be able to work anymore, not in any 'job'. So I am starting my own dog training business.
SO my dear Tanya... may I strongly suggest that you throw all your energy into your dogs, thank your lucky stars you have such a fantastic man by your side and try not to push yourself too hard. Because this disease has a habit of MAKING you stop, perhaps permanently. I know how hard it is to change your busy lifestyle to accommodate your illness... and honestly it is even harder to do so, when everyone around you has always admired you for your energy and your go go go attitude. Sometimes it becomes expected of you, regardless of what is going on.

As for meds... you should at least be on plaquenil. It doesn't eliminate the disease or the majority of symptoms, but it will take the edge off, I find especially regarding lupus rash and overwhelming fatigue. Not that I am a doctor... but its often the general standard.

Anyway, greetings! I hope you get that new rheumy appointment soon. Maybe tell the receptionist next time you call that going through this cancer treatment is bad enough, but there is barely enough of you left with the lupus in full effect... sometimes a little back story can help you get the next canceled appointment... otherwise you are just another person with lupus waiting.

Forgot to add... I too dont have a supportive family. I think it may be more common than people expect. I have always seen families on TV, on the news and in movies, banding together around a sick family member. I've been jealous and cynical of the support I see in families on TV. In reality, my parents left me to die, when a tumour I had hemorrhaged and I needed emergency life saving surgery... and they wouldnt help me get a loan to pay for it. It broke my heart forever.

My sister now is going through diagnosis of her own. She has always been small and fit and lived an EXTREMELY health conscious life being a personal trainer etc etc. But over the past five years she has developed signs of pre-diabetes. She needs to eat every hour or she becomes dizzy, gets the shakes and eventually passes out. She has the symptoms of low blood sugar, but when they test her blood sugar, it comes back extremely high. Recently, she passed out and broke her front teeth : (
Tests revealed cysts on her brain and ovaries. Her T bilirubin was doubled and her iron levels were double the acceptable level!!!
She lives over 1000kms away from me... so I asked my other sister to go with her to the specialist appointment. Her response was "No... she is a big girl, she can look after herself. Stop worrying so much.". Nice family huh?

Anyway... she had to go alone. The specialist did nothing, no diagnosis, no follow up, nothing. Didnt even ask her if she had abdominal pains, didn't send her off for a CT for her liver or pancreas. Told her to eat healthy, stay active and dont put on weight.
She has clear signs of liver or pancreatic disease... and they did nothing! When I move down to where she is I am taking her to the god damn specialist and making them do the appropriate tests! She almost passes out in the car for goodness sake... her condition is serious!

Anyway lol sorry for hijacking your thread.

wash&wag
06-23-2011, 04:49 PM
I am SO sorry to hear of your sister! Yes, in spite of how your relationship is she needs you! If anything to speak up and not take the "I don't know" as an answer.
My positive energy and thoughts are in her direction.

Without my dogs and starting my small business I would have gone insane! I have never NOT worked! I enjoy the shows as much if not more than when I showed horses and competed. It helps take the focus off how crummy I am feeling and forces me to stay out of bed after gettting my kids off to school.

I have contacted my PCP about the Plaquenil. It is not in my nature to be a vampire however am/have learned to make adjustments to when and how long I am in the sun.

SSDI I have appealed and will continue to fight. The whole process is just frustratitng. Especially when I see those younger than I (I'm 37) by 10 years and because their mom drank alcohol while she was prego they automatically got it at 18 without ever working a day in their life. Ugh! Like the bad doctor subject of which before I was diagnosed I saw 16 different doctors in 14 months, I could go on and on.

My family loves me however, is a large family and well dysfunctional. My mom thinks everyone should get a ribbon and sort of gets it. My dad blantently does not believe in medications and I am sick because of my blood pressure medication and the medications I have been prescribed for the pain and headaches. (Topamax and Tramadol) I do take Celexa 10mg as a mild 'chronic pain management' and anxiety medication. However, my hypertension I have been on since I was 26 and if I don't take it I would stroke out or have a heartattack. He feels I need to exercise and get into the sunshine more. Not getting it. I can't do either! Well, I walk my dogs on my good days and Scott bought me a really nice bicycle to just liesurely ride around and is less impact on my joints. My brother is too wrapped up into his own world to even call and just say "how are you?" Therefore, my teenage children and Scott have been my rocks and shoulders to cry on when I need it. But, trying to not be a burden on anyone I do a lot on my own and my dogs get an earful A LOT!

Just reading through the threads all my symptoms and the way I feel it's just nice to have people who can FINALLY relate! Like today drove to have an Ultrasound done on my neck as my routine yearly post Thyroidectomy, the sun coming thru my tinted car window for 45 miles there and back, left my arm in a rash and my cheeks and lips feeling stingy, itchy and red. The unbearable fatigue we get sometimes. OR how we crash and HAVE to lay down at somepoint in our afternoon.

All I can say is this site is my new BFF :-) and I am incredibly happy to have found you all. :-)

Gizmo
06-23-2011, 05:53 PM
I totally get the car issues. You can get UV tinting put on your car windows, and it helps alot. In Colorado there are legal limits for how dark your windows can be, but supposedly with a doctor's note you can go beyond that. The tinting place should be able to tell you what is legal. My rheumy told me they make clear UV coating, but I wasn't able to find it. A sunshirt and sun gloves are great investments - keep them in the car to pop on every time you get in. I keep sunscreen in the car, too, in case I forget before I leave the house. You can buy face masks and scarves to keep the sun off of your face - but some of them might get you pulled over if there is a bank robbery or murder in the neighborhood LOL.

tgal
06-23-2011, 06:23 PM
I carry sunscreen in my purse as well since I have trouble with UV lighting. Cars and stores are the places people don't think about but they can cause a world of trouble

Tanya's guy
06-23-2011, 07:43 PM
All great information. Such a useful site. Tanya, how did we get this far without these folks? I wish I had something constructive to add but unfortunately I'm learning about this as we go along.

Gizmo
06-23-2011, 07:50 PM
All great information. Such a useful site. Tanya, how did we get this far without these folks? I wish I had something constructive to add but unfortunately I'm learning about this as we go along.

Don't worry - your time will come to help someone else along this road. You have a unique perspective as a significant other and caregiver and your voice is an important one for us to hear.

Tanya's guy
06-23-2011, 08:13 PM
I wish someone could talk her into moving in with me. That way she would have much less to do. I would do all the physical stuff that makes her uncomfortable. I love that woman more than any words could ever put together. It just breaks my heart to see her going thru this. What really hurts is if she did live with me then I know she would be doing much better. Kids kind of are getting the way of that right now so I just need patients.... Our day will come. I'm certain of it.... And when it does I will be there with open arms even if it's 20 years from today.

giggle
06-24-2011, 02:47 AM
aw dude, you are so sweet! What a lucky girl you are Tanya : )
I guess she will move when she is ready. She sounds like a very independent lady. It might be a huge undertaking to move as well, relocating children and dogs and horses? lol

Thank you for your thoughts regarding my sister... its been playing on my mind a lot... I want her to be safe.

Peridot20_Gem
06-24-2011, 09:03 AM
GREAT! Tanya chimed in. I can tell you this I had tears streaming down my face last night as I was reading her post. My GOD, I was crying like a little girl. She hasn't received support like this ever! How wonderful and what a great bunch of folks. I'm sure you will be hearing much, much more from us. In fact, I guarantee it.Hi Scott,

It's lovely how Tanya eventually came on and poured her heart out as it will help you both in so many ways because not just having one another but you both have joined a close family with us all at the WHL who will support and give advice as best we can, as we're all living in the same situation's.

Hugs to you both Terry xxx

Peridot20_Gem
06-24-2011, 09:12 AM
I wish someone could talk her into moving in with me. That way she would have much less to do. I would do all the physical stuff that makes her uncomfortable. I love that woman more than any words could ever put together. It just breaks my heart to see her going thru this. What really hurts is if she did live with me then I know she would be doing much better. Kids kind of are getting the way of that right now so I just need patients.... Our day will come. I'm certain of it.... And when it does I will be there with open arms even if it's 20 years from today.Scott,

All i can say mate on the situation of Tanya not moving in with you...is give her time she's going through alot now and she will need your help and support either sooner or later, mines progressed on me in the last 2yrs and i can't thank my hubby enough for the extra's he's taken on.

Nobody can force her as you know and the old saying is...(it comes to those who wait) I know you want to help her so much but have you ever thought the independance of being in her own place is keeping Tanya fighting because we all cope with the disease in different ways.

Peridot20_Gem
06-24-2011, 09:26 AM
Hello Tanya,

You carry strong determination to carry on going which is great and you do have a man there who loves you dearly, as we all need love and support.
Refering the plaquenil i'm on that, it's a none steriod drug and great for the skin and if you start the drug i suggest you take it at night as i was advised that off Linda on the site and it's worked better for me this time.
Your dads abit simular to mine, my father would'nt except at ALL that i was ill, he left the lot to my mom. I'm like you can't even sit in the shade after 10mins my skins off and i could scrap myself silly.
I know you've got family but besides your parent's love your man..my parents are dead and they did'nt know i had Lupus although i was born with it and inherited it off one of them, i have a sister in spain who's never been intouch in 6yrs since my mom passed away and i have a younger sister who lives over 5miles away and she never gets intouch and i know i should'nt say this but they're out of my mind now of existing because my young sister knows and never as the thought to come over or phone, so my love is for my hubby and my staff.

Tanya please wear sun bloke and cover your skin as best you can because a flare can be so terrible to we.

Hugzzzzzzzzz to you Tanya & so lovely to have you and scott with we.

Love Terry xxxx

wash&wag
06-24-2011, 04:43 PM
Hi All,

Yes, I have a WONDERFUL man in Scott and I tell him everyday how lucky I am and I am not sure what it was I did in this life to deserve him. I will love him till I'm gone and look for him first in the next life. I cannot wait for the day I can live with him. My kids are 8th grade and 10th grade, not the oportune times to move them into new schools. Otherwise I would have been there already.

Sunblock is a daily routine. I lather up every morning and I have realized I need big floppy hats (which I LOVE hats) and an umbrella. My windows are tinted and I am thinking I may need a shade or two darker in the fronts as the law really doesn't allow them to be tinted. However, if it takes a prescription from the doc I will do so.

Today woke up with the "Headache". Then the nausea and the pain........so been taking it easy. Hope everyone is having an enjoyable day!

Still waiting on my doc to email back about the Plaquenil.

Talk to you all later!

Peridot20_Gem
06-24-2011, 04:55 PM
Hello Tanya,

Yes you do have a wonderful man there and the love and care he carried for you is outstanding and he so much wants to be involved with you and your life 150%...well i see where you coming from with your children because sometimes with kids it's an up evil and i hope he comes to understand this because as long as you keep to your meds like you have, you've got quite a few years ahead of you yet.

Well at least your using your head with the sun and heat..i really hate it because i've just got no more enjoyment no more, winter does the extreme with my skin through the raynauds and come summer my rheumo as stopped me from going in the shade when it's hot as my skin reacts terrible with it and that's with bloke and being covered up, i can't type on my pc without wearing gloves (WHAT A WONDERFUL LIFE). LOL

Oh the headaches are such a regular aspect with Lupus but they can really hurt and day in and out for me it's pain and i do get some nausea also but i do hope the email comes through for the plaquenil and if your skin ever as a flare ask for steriod cream to remove it and as soon as it's gone give your skin a break.

You takecare mate.

Hugzzzzz Terry xxx

Gizmo
06-24-2011, 05:30 PM
Tanya, as a mom it's nearly impossible to put yourself first - and moving your kids away from their friends probably feels like cruel and unusual punishment. We moved in 6th and 8th grades and I came out just fine, as did my siblings. In fact, we ended up in a much better situation. For one thing, my Dad had a job, so we had enough money for food and new clothes and spending money. Kids are more resilient than we give them credit for, and they probably want their mom to be as healthy as possible. It might actually be a load off of their minds to know that you have someone (besides them) taking care of you. Just a thought...

steve.b
06-24-2011, 09:11 PM
i am a step father to 4 children, now all grown. and have 2 with my wife.

talk to the kids............... they may want it now too, but not know how to approach it.

Peridot20_Gem
06-25-2011, 02:32 AM
Steve....your right in what you say the kids may be ok with it.

lovedbyHim
06-25-2011, 03:37 AM
Hi Tanya, I can tell you are a wonderful mom and I admire that in any woman. My children have been through a lot with my divorce to their father and uprooting them. I have adult kids now. Some cope better than others, but to this day they say it was what was best. If your children knew how truly sick you were, I believe their love for you would carry them through the transition. Not that I am saying scare the crap out of them, but to say, I need an adult to walk with me as it is too hard. If they don't understand now, I believe they will once older.

Only you know what is best Tanya. If it were me, I'd make that man marry me first (giggle).

Peridot20_Gem
06-27-2011, 08:15 AM
Hello Tanya,

How are you feeling today and i do hope it's one where it's a little less pain free for you. xxx

wash&wag
06-28-2011, 02:27 PM
Good Day My Friends,

I am doing fairly good today. Sorry have been really busy the last few days and haven't been on my computer to respond. Rough day Friday though. However, it looks as though my PCP is going to come through with the Plaquenil. I also have been using my sunscreen as part of my daily aftershower routine, added a bottle to my purse and spf 30 lip gloss. Seems to help the car rides and Scott gave me a really GREAT umbrella today! I was able to groom 3 dogs yesterday, drive 4 hours and still get up today and make my radiation treatment and scans. 3 more treatments to go! :-) Hope you all had a wonderful weekend!
I will check in later this evening. :-)
Cheers!

wash&wag
06-28-2011, 02:29 PM
This was very helpful and have taken it in as my routine. :-) Thank you!

lovedbyHim
06-28-2011, 02:49 PM
Tanya, I'm so glad the little tips are working for you. It's amazing how dangerous UV can be. So glad you are feeling a bit better! I hope and pray the treatments will not leave you in bad shape. Take good care and thanks for updating us.

Peridot20_Gem
06-28-2011, 04:26 PM
Hello Tanya,

Nice to hear off you and i hope scott's doing fine besides.

I am pleased your using things refering the sun and protecting yourself and plaquenil as been good with me also so fare and i hope itkeeps that way because at least some medication is helping my system.

Well at least your still going determindly strong with doing things besides going for your radiation..i do hope after your next 3 things can start to look abit better for you in general.

Hugzzzzzzzz you way Terry xxx

Tanya's guy
06-28-2011, 05:45 PM
The Scott Kat is doing just fine. A little busy getting my oldest daughter off to college this week.

Thanks to all the suggestions for Tanya. Like she said, yesterday she drove for a few hours in the sun with sunscreen on and it worked great!!! I did give her a big ole umbrella to keep the sun off of her. I told her to just toss it in the trunk of her car, maybe someday she will need it. Having said that I have had one in my car for about a year and a half and she NEVER has used it yet!!! I bet she will now though! :-) Again, thank you all so much for your support and comments. It certainly doesn't go unnoticed.

Peridot20_Gem
06-28-2011, 05:59 PM
Hello Scott,

Nice to hear off you also and know your doing fine besides.

Well i am pleased suggestions have helped Tanya such alot and it seems your learning such alot along the way and that's nice as you'll know what she's going through even though your not suffering it and giving her an umbrella for a start off is thinking ahead of the heat hurting her.

Just keep we updated if Tanya is not able to because we all have our bad days.

Hugs to you both Terry xxx

wash&wag
06-29-2011, 09:29 AM
Good Morning,

Sort of in pain more so than usual today after radiation yesterday. I have a question for the ladies, do your flares tend to happen or seem worse during your PMS timing?

Peridot20_Gem
06-30-2011, 04:25 AM
Morning Tanya,

Sorry to hear your in more pain with the radiation but as you know it does carm down a little as my uncle used to have it, not a pleasent thing and your going through such alot.
Tanya it's funny you mentioning this and other things have been mentioned on the site which makes your mind flick back to before you was diagnosed, as you know i was born with it as i stated and had loads happen down the years but was'nt diagnosed till 3yrs ago after my skin was bad and before i was due for my monthly 2wks before hand all across my chin i used to break out in spots and when my monthly ended they used to fade away and as the years went on the rash started on my forehead.

Myself personally once you have Lupus it can do all sorts wthout we realizing before your diagnosed.

I hope your days a better one mate and all my love Terry xxx

Marty
05-21-2013, 09:21 AM
I am new to the group my wife has lupus and I really try hard to help her with everything and be here for her but just seems like she always wants to do it her self. She is really a hard worker and does so much for our family she always pushes her self to do to much. It's been hard for me to understand everything that is going on with her and to be able to know when she just needs me to be there for her. This site has a lot of useful information thanks for the add