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Fusiongirl
Veteran Member


Date Joined Apr 2012
Total Posts : 608
   Posted 1/29/2014 12:40 PM (GMT -6)   
Has anyone heard how Barbara is doing. I hoping she's busy concentrating on getting better and she's improving every day.

Love and (((hugs))) if you read this Barbara.

Jane

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 1/29/2014 6:53 PM (GMT -6)   
She's at home, her IV antibiotics are done, and she's healing as best she can.

DianeB
Veteran Member


Date Joined May 2013
Total Posts : 1343
   Posted 1/29/2014 8:11 PM (GMT -6)   
I just now read a post from her to Purgatory posted yesterday at Prostate Cancer forum..

Has some updated info about herself too

I was getting ready to post asking about her too !!!
Diane
Old enough to be a grandma !
Herniated cervical discs & other disc / spine issues, Arthritis,
Injuries &/or pain to/in shoulders, elbows, wrists, knees, legs, ankles
Fibro / myofascial pain, neuralgia, neuritis
Fentanyl, oxocodone & muscle relaxers - 1,000 Vit D & multiple daily vit

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 1/29/2014 11:36 PM (GMT -6)   
Hi Jane, Lynn, and Diane:

Sorry I've been AWOL, I've been having a bit of a difficult time here. Now that my steroids are back to my normal dose I'm feeling really crummy again. Loads of joint pain, chest pain, and lower back pain.

I was suppose to see my PCM last Thursday, drove the 45 minutes down there and couldn't find a parking place and missed my appointment. I called the clinic and tried to get in but was informed I had to see the NP on the team or wait until 27 February to see my Dr. Well, the NP and I don't get along to well so I elected to wait. Needless to say, I cried all the way home and was feeling totally helpless and wanting to give up on taking all my medications. Managed to pull out of that feeling on the weekend.

Then yesterday, I went to see my Oncologist and Pulmonary Dr. I feel neither appointment went to well, first off my oncologist informed me that I've seen every specialist there is out there for my lupus. That I've tried EVERYTHING to treat the stupid disease and I've not improved one bit. The only time I feel good is when I'm on 40mgs or more of prednisone. Which I can't remain on that dose forever, I've managed to fracture and refracture multiple ribs in the past year.

So, he tells me that I basically need to ACCEPT this is the way my life will continue until I worsen and I die. He suggested I see a therapist to help with this, I informed him I was already seeing someone, and I'm not sure I can accept this. I have NO quality of life and I live in never ending pain. I told him that my Rheumy felt that I've maxed out on my MTX and I needed to cut back on the dose as it's affecting my kidneys.

The oncologist doesn't agree with that, of course not, WHY WOULD THEY ALL AGREE WITH EACH OTHER. devil devil He feels that I need to continue at the dosage I'm at and possibly continue to go up on the stuff. The type of Leukemia I have, MTX helps temporarily keep it at bay for awhile. I asked him how much was to much MTX. He said there wasn't a limit, and IF he had to give me blood transfusion weekly that was fine with him.

He feels until I've met ALL four of his criteria for my leukemia to be UNSTABLE, it isn't safe to treat me with any other type of chemotherapy drug but the MTX. I happened to run into my PCM in the dining hall and told her what my oncologist had to say, guess what........she didn't agree with what he said. She still feels that the MTX is causing my kidneys levels to rise and feels I need to see a Kidney specialist ASAP. It's either the MTX, or after all these years my lupus has decided to attack my kidneys. Just what I need another organ to fail me.

My PCM said she'd talk to my oncologist and rheumy and let me know if I should go back to the dose I was on. I know that I've not had ANY MTX since the 10th of December. So when I saw my pulmonary Dr and found out the my hemoglobin was down to 9.4, I know it's not because of the MTX. That's my leukemia pulling it downward. Of course, she informed me that having a low hemoglobin will cause shortness of breath and cause my lips to be blue like they are now.

I've managed to set up another PET/CT scan for the 12 of February. I did ask her if the nodules "light" up again in my lung what was her plan. She told me that IF they "light" up again, she's either going to request a biopsy of the nodules in the lung OR she may just go ahead and send me to Thoracic surgeon and ask them to remove the nodules from my lung. Now, we aren't talking a small simple surgery here, but big time lung operation in the upper lobe. She said with me having leukemia and being exposed to heavy second hand smoke as a child and teenager, I'm in a higher population that get lung cancer. That every X-ray and Chest CT really looks bad and she's really questioning what's going on in there

So, here I sit really contemplating stopping all my medications. I mean I know I'm to wean off a lot of them, but....... I mean what do I have to look forward to, except that I'm going to get sicker and sicker, then die. Oh boy, that sure will be a blast, I know I should be so harsh and difficult, but I hate hearing the words "We've done all that we can, and really don't know what else to do for you". How do they expect me to hear that and NOT be affected emotionally by those words?

I just wish that they could step into my body for a day or two, I bet after spending 48 hours in my body they wouldn't say that to me again. I've fought so hard to stay alive and pull thru trial and trail. I mean I think I've used up most of my cats 9 lives, and I just don't know how I'm going to face getting sicker. I'm sick enough, I don't want to get sicker.

Do you think it's wrong of me to want to take the chance and treat me with the different chemo's and to heck with it hurting me? I need to do something other than sit here and hurt 24/7 and wait to feel worse. I mean I feel terrible ALL the time. I feel as if my immediate family is pulling away from me, one because they are tired of dealing with this crap day in and day out and the other I think so it won't hurt so bad when I die. I need them, I'm scared and I don't have them. I'm missing my parents so badly right now, I mean I know they know what's going on with me and are watching over me. However, I'd love to hear them tell me "it's okay, we're here we love you."

Well I guess I've vented way, way to much. Probably said more than you wanted to know. I've been cleared to return to pulmonary rehab as my oxygen saturation is sitting at 89% most of the time. I'm now up to 3 liters of O2 24/7. I'm doing PT twice week for my back and both feet. Dr ordered a TENS unit for me and I'm waiting to get it soon. Still doing my massage twice a month, which I desperately need, but can't get in until the 12th of February after my PET/CT scan. I've had a major headache for 7 days now, not sure why but please pray and send healing energy my way. I need the stupid thing gone and soon.

Thanks for listening and Jane and Diane thank you for asking about me. Lynn I know you always have my back so thanks for letting them know I was okay. I hope you are all doing well, I'll be reading up on the CP forum to see how things are going for you both. Lynn I hope you're doing alright give your kitty a pet from me. Take care all and I hope you all have good day today.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 1/30/2014 5:54 AM (GMT -6)   
Oh Barbara that just sucks. I'm so sorry you are going through all this and wish I could do something to help! I will definitely keep you in my prayers and sending lots of positive energy your way.

You could never vent too much, I'm sure everyone will agree that the best thing you can do now is vent and reach out for support. Especially from those of us who may have a better understanding of the he** you are going through right now. Now is NOT the time to withdraw into yourself, you don't have to face all this alone.

I don't blame you one bit for wanting to just quit your medications. In all honesty that is what scares me most about being diagnosed with lupus - the damage that the meds can do while treating other symptoms. But you can't give up and some are essential.

I'm not sure what your diet is like but can you make any changes that may help? Would you consider seeing a naturopathic doctor or alternative therapies? Some can help with the side effects of the pharmaceutical drugs. I know a lot of doctors frown on this and scare us away from it but some people do have success with it.

I just started reading a book called Lupus, Alternative Therapies That Work by Sharon Moore she has lupus and writes of her experience with alternative medicine. It is very interesting and def worth a read. Also there is a movie you can watch for free on the internet called Food Matters.

I don't think there is a "cure" for lupus but I do honestly believe that we can help ourselves get the specific vitamins, minerals and nutrients needed to make our bodies stronger and more balanced machines to deal with it. The only thing is that it takes time for natural therapies to work. It's not an overnight or quick fix like pharmaceuticals are.

I'm not trying to sell you snake oil or give you false hope, just putting out there what I have been researching and hoping that maybe it might help. I don't recommend stopping all your medications but do recommend you see a naturopathic doctor just to see if maybe that will help.

You will be in my thoughts and prayers, sending gentle hugs to you and brewing you up a nice warm chamomile tea ;)

Joie
Lupus, livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/30/2014 2:16 PM (GMT -6)   
(((((((((((((((((Gentle hugs)))))))))))))))))))

Sorry things are looking dark for you, but try not to give up.
I wish I could be there physically for you, but I'm here spiritually for you.
Hang in there, have your pity party, but don't give up.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 1/30/2014 7:24 PM (GMT -6)   
Hi Barbara My heart breaks for you. Bless your heart. I have been thinking about you, but I didn't know whether I should post a thread asking about you or not.

My thoughts and prayers are with you my friend. Please don't give up. We're all here for you. My e-mail is in my profile if you need to talk. Please feel free to send me an e-mail anytime. Many healing thoughts coming your way.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 1/30/2014 8:34 PM (GMT -6)   
Hi Barbara,

My heart just broke when I read your post. I wish that I could take some of that pain away from you. It is totally okay to vent and let your emotions out in this venue. You have lots of support and understanding here. This journey is difficult for all of us and sometimes the people that truly get it are others who are walking in similar shoes. I am here for you and sending you a very gentle hug.

Love, Laura

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 1/31/2014 10:01 AM (GMT -6)   
Barbara, it's absolutely horrible that your doctor's are not on the same page as you, Sure wish someday they get it...Many gentle ((((((((Hugz)))))))) and always keeping you in my prayers...Many many well wishes...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Fusiongirl
Veteran Member


Date Joined Apr 2012
Total Posts : 608
   Posted 1/31/2014 4:46 PM (GMT -6)   
Barbara

I have been thinking of you and just wanted to know you were ok! I'm truly sorry you are having such a tough time of it, sometimes I just don't know how you cope. I hope your doctors get together soon and agree to some plan of action for you. You know I care about you and more than anything want to see you back to a level you feel comfortable at. Please look after yourself and take care in that bad weather you are having in the US, you don't need an falls or more bad pneumonia.

(((Hugs)))

Jane

Lynn, thank you for letting me know how Barbara was doing.

DianeB
Veteran Member


Date Joined May 2013
Total Posts : 1343
   Posted 1/31/2014 6:58 PM (GMT -6)   
Barbara
Good to hear from you - please please know we are here for you, whatever it is that we can do.
Reading a vent reminds me that I am not alone.

Ditto on so much of what others said - we care about you ..
wish I could do a Jeannie or Samantha & blink away / wiggle my nose waway your problems hon.

My own health issues & pain are nowhere near yours. And Cannot offer any medical advice.

You remain n my prayers of course.

I DO wonder about myself, about what I will do as I age & become less mobile, have more pain & all the other issues that might come up

Before my pm doctor & I found the right meds & PT I considered a lot of hhmm alternatives - pain sure wears on a body! And What if I develope dementia or other mental challenges ?? Or have a stroke??

I can get myself in quite a bad emotional state in practically no time!!

So occasionally I remind myself to cheer up, I might be in a fatal car accident tomorrow & will have wasted all that worry!!

Hope that made you laugh - it's true, but I laugh whenever I think of it.

Luv & gentle hugs.. wishes for a comfortable night's rest.
Diane
Old enough to be a grandma !
Herniated cervical discs & other disc / spine issues, Arthritis,
Injuries &/or pain to/in shoulders, elbows, wrists, knees, legs, ankles
Fibro / myofascial pain, neuralgia, neuritis
Fentanyl, oxocodone & muscle relaxers - 1,000 Vit D & multiple daily vit

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 2/4/2014 10:17 PM (GMT -6)   
Hi Joie, Joy, Loretta, Laura, Chart, Jane, and Diane:

I want to thank ALL of you for taking time to respond to my post. It brings me a lot of comfort to know that you are always here to support me and there for me to lean on if I need.

Joie, to answer your questions, I've tried a lot of herbal supplements several years back, and only made myself sicker. Lupus can be VERY touchy with natural substances, which I found out the hard way. I do have a fairly healthy diet now days. It doesn't seem to matter what try or do, I've just got so much inflammation in my body I'm in a NEVER ENDING FLARE. My Dr's truly believe there's NOTHING left for me but to cope. Once my leukemia begins to disobey (as I call it) they will start me on traditional chemotherapy and hope to give me more time.

As for how I'm doing now, not well at all. I've had a stupid headache for almost 10 days now. Some days I wake up and it's mild and then terrible at night or just the opposite. My feet and ankles are killing me and I started walking on the treadmill again today at pulmonary rehab. My oxygen levels are down still and I have my second PET/CT scan next Wednesday to try to figure out whats growing in my lung.

I've got severe joint pain, and over all can't sleep because of it. I'm feeling so wiped out 24/7, and just can't seem to pull out of it. Then tonight we took our cat to the vet and found out he's down to 8 pounds .15 ounces. Plus they hurt my baby, he's had a bunch of blood drawn over the years and NEVER had an issue. Tonight the girl who drew his blood, pushed the needle straight thru his vein and he now has a hematoma on his leg the size of a marble. He's limping and just is pitiful. I'm very worried about the weight loss that has happened in the past 5 months for him. I think he's getting closer and closer to needing to be put down. I'm going to just fall apart when he's gone. He's my comfort and sleeping buddy, he's my baby. Better not start thinking about it cause my headache will get worse.

Well that's all for now, I'm feel really rough tonight so I'm headed to bed to try to sleep. Will post again tomorrow I hope. Please take care of yourselves and know that you are all are in my thoughts and prayers daily.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 2/5/2014 3:22 PM (GMT -6)   
Barbara,

So sorry to hear that Grady is having such trouble. I bet he was a little dehydrated and that's why the needle went thru his vein so quickly. Hopefully you are feeling well enough to hand-feed him over this hump. Give him some ear scratching for me!

And what are we to do with you! I hear your oxygen levels are down, so that is part of you feeling so tired... And dehydration can contribute to your headache, so can low oxygen. Maybe you need a blood transfusion? I'm a universal donor, so I can send some your way if you want. I guess they'll still take my blood! A headache sounds so simple, but with your other issues it might mean something important - hope you've remembered to mention it to your Drs.

Hugs always,
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

DianeB
Veteran Member


Date Joined May 2013
Total Posts : 1343
   Posted 2/6/2014 10:19 PM (GMT -6)   
Barbara
Poor babies - you & kitty..

There is so much going on your body; having a headache too is so awful..

I di not know if my personal past issues mighr apply but I am going throw them out there just in case

1). Anout 13 yr ago I Had a cracked tooth.. only felt a little toothache but when I finally went to dentist, he took care of the tooth & my 30+plus day major headache went away

2) about 11 yr ago I ' went vegan ' & used soy products for protein ..
Developed a nagging headache which just got worse & worse.
I had an herbalist do that test where you hold a product in one hand & someone tries to push down the other out stretched hand/arm.
We tried all the supplements I was using - nothing.
We talked more about diet -she immediately checked the soy & that was it.
No more soy for me. Literally, the headache was gone the next day.

Both time I was ever -so grateful to be rid of those extra pain.

Hopefully the source of yours can be something hhmm simple.. difficult but easy.

Currently My headaches come from injured discs so I'm not pain free pretty much all over my body - it sucks ..

So so sorry sweetie.
Love on your furbaby
Diane
Old enough to be a grandma !
Herniated cervical discs & other disc / spine issues, Arthritis,
Injuries &/or pain to/in shoulders, elbows, wrists, knees, legs, ankles
Fibro / myofascial pain, neuralgia, neuritis
Fentanyl, oxocodone & muscle relaxers - 1,000 Vit D & multiple daily vit

Beating Lupus
New Member


Date Joined Feb 2014
Total Posts : 12
   Posted 2/6/2014 10:50 PM (GMT -6)   
Hello Barbara and everyone,
First I must say I love the support you all give to one another!
Barbara my dear you have been through and are going through an unbelievably challenging time. I cannot imagine the difficulty.
I also have lupus, diagnosed in 2007, but it started showing itself in 2004. I have been through many rounds of prednisone for lupus flares and for asthma flares. It totally makes you feel better but not good for you in the long run. (causes osteoporosis, elevates blood sugars). I was also on Plaquenil and Cellcept. They wanted to put me on Methyltrexate as well, but I said no way! With nutrition, yoga, alternative therapies, but mainly with use of Vector 450 with Muno IgY supplement, I have been able to go off all of my medications. My lupus is about 90% controlled, have some mild fatigue and malaise on occasion.
Are you following any special diet right now?
What supplements have you tried?
My rheumatologist is completely amazed at how well I have responded to taking Vector 450! It has given me my life back. I was no where near where you are now, however I think it could still help you! It is not an herb, so there is no worry of drug interaction with anything else you take. It will help you fight infections, but does not boost your immune system, so it won't make the lupus flare either. I actually was able to get rid of strep throat and the flu last winter with it.
Reading your post made me want to share my ideas and treatments for my lupus and how successful they have been. The supplement is a huge part of it, but not the only part of the treatment. And It sounds like you really need as much help as you can get!!
Please let me know how I can help.
PS...I am also a <snip>so I only take things that are safe!

Natalie.

Post Edited By Moderator (Lynnwood) : 2/7/2014 9:44:04 PM (GMT-7)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 2/9/2014 10:27 AM (GMT -6)   
I got a message from Barbara this morning, asking me to tell y'all that she is "still among the living and will post as soon as I"m able to do so".

So, there you have it.
Be well.

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 2/9/2014 11:51 AM (GMT -6)   
Thanks for the update Lynnwood!

Laura

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 2/9/2014 1:08 PM (GMT -6)   
She also still has the headache and is having some balancing issues. She see's a Dr Wed...

DianeB
Veteran Member


Date Joined May 2013
Total Posts : 1343
   Posted 2/9/2014 5:52 PM (GMT -6)   
Thnx Lynnwood

Prayers continue
Diane
Old enough to be a grandma !
Herniated cervical discs & other disc / spine issues, Arthritis,
Injuries &/or pain to/in shoulders, elbows, wrists, knees, legs, ankles
Fibro / myofascial pain, neuralgia, neuritis
Fentanyl, oxocodone & muscle relaxers - 1,000 Vit D & multiple daily vit

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 2/14/2014 3:31 PM (GMT -6)   
Barbara checked in Wed, Feb 12th on her way home from the Dr. She still has the headache but they are thinking it's a sinus issue. She has some meds and is supposed to see an ENT if things don't get better in a few days.

DianeB
Veteran Member


Date Joined May 2013
Total Posts : 1343
   Posted 2/16/2014 8:56 AM (GMT -6)   
Thnx Lynnwood..
Diane
Old enough to be a grandma !
Herniated cervical discs & other disc / spine issues, Arthritis,
Injuries &/or pain to/in shoulders, elbows, wrists, knees, legs, ankles
Fibro / myofascial pain, neuralgia, neuritis
Fentanyl, oxocodone & muscle relaxers - 1,000 Vit D & multiple daily vit

Fusiongirl
Veteran Member


Date Joined Apr 2012
Total Posts : 608
   Posted 2/16/2014 4:52 PM (GMT -6)   
Poor Barbara, I wish wish wish she would get a break. Please give her my love Lynn.

Jane

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 2/16/2014 5:43 PM (GMT -6)   
Hi Barbara,

I am thinking about you and sending you lots of support....and a (((((((((((((gentle hug))))))))))))))).

Love,
Laura

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 2/17/2014 10:37 AM (GMT -6)   
I guess I must be outta it as I didn't see this thread and started one last week...sorry...(my memory isn't so great)

Hey Barbara, saying prayers for you...How is Nikita doing at College/University? My Jazzi graduated in December it was a huge graduation day they had 4 scheduled for that day. She has two part time jobs which is good for now until she can get her teaching certificates and such, plus schools do not hire until Summer...so hopefully she'll get a teaching job, she will be an excellent teacher...I bet Nikita will be excellent at what she chooses as well...
Take care and gentle ((((Hugz))))
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 2/18/2014 12:14 PM (GMT -6)   
Hello to all that have posted, (Sorry I'm just not well enough to post all names)

Just a quick update, I'm not doing well at all and I'm almost ready to cry Uncle. This morning I had to cancel an appointment that I have been waiting for since November 2, 2013. As some of you know I'm having serious issues with my feet, especially my left one. I couldn't get in to see the foot and ankle surgeon until today..

Well, over the past week or so I have been barely been able to walk on my left foot. Last week when I went to get my PET/CT scan done, I fractured three ribs just bending over to pick up a bag. Needless to say I'm in major pain with the broken ribs. We've had a lot of snow here and my hubby drives a sports car. So, when it's snowy or there's rough roads, I have to get up and take him to work at 7am and pick him up at 4.

This morning I woke up, barely able to stand up, foot really swollen, headache pounding like a drum, stuffy nose, sore throat, slight temp. My appointment last month I missed due to no parking in the parking garage. So, my plan was to take the shuttle from the base we live near to the medical center. However, that would mean I would have to go to the medical center 3 1/2 hours early and WAIT to see the surgeon.

With how I was feeling this morning there was NO WAY I could drive hubby to work at 7 and then go back to catch the shuttle and then WAIT 3 1/2 hours. So, I had to cancel m appointment mad Now I have to WAIT another 21 days until I can see this Dr. I new when the combined the two medical centers things would get terrible and they sure have. It's hard to find parking, yes they have handicap parking and I have a sticker. However, there are more handicap folks than spots. With all the snow the top level of the garage has lost half of it's parking spots. The other patient garage is under construction so only my 1/3 of the spots are there right now.

Hubby left here mad at me and I just don't get it. I mean I can't help it that I'm not well and I can't help it if I feel I'm a danger to drive a car. I just feel SO overwhelmed at the moment. My hubby wants to quit his job and just stay home so that he can take me to appointments. He's only 52 and does have a retirement already, BUT, 52 is to young to be home with me all the time. Plus, he's working on a second retirement and I have to admit the extra income is nice to have.

I want him to wait anyway, as my leukemia worsens and I get sicker I'll need him then. I just don't know how long I can keep fighting these multiple diseases. I mean I've battled lupus for 26 years and I'm very sick with it, but now having the RA/Fibro and the leukemia on top of it. I'M TOTALLY OVER MY HEAD IN THE POOL.

Anyway, that's how things are at the moment. I've sat up long enough, feel like I'm gonna be sick and need to lay back down. I'll try to post again once I hear from the surgeons nurse.

Chart, I'm so glad that things went well for Jazzi and I'm certain she'll be a great teacher. I hope that she gets a teaching position this summer. Nikita is a Junior this year and still has all of next year to go. She's an RA and also works on campus. She's got two part time jobs too. She's really busy with school but doing well. I know that you've been having a really hard time with your RA. How is the MTX going, I can feel for you with the side affects. My Dr's have me up to 35mg injected weekly and it's looking like I may end up as high as 50-75mg injected. Not for my RA but to help keep my leukemia under control for the moment. My oncologist even said IF he has to give me blood transfusion twice a week then so be it.

Thanks everyone for you prayers and loving support. I'll be in touch soon.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.
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