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I'm Sick Of Lupus and Life

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Posted 7/6/2013 5:41 AM (GMT 0)
cry Hi everyone I feel terrible and just don't know what to do. As most of your know I'm dealing with a lot of other health issues than just my lupus. I've been sick ever since I had my cataract removed on the 17th of June. Prior to that I was told I had Achilles tendonitis in my left foot, well I now have it in both feet. I can barely walk.

Last week I broke out in a rash all over my face, and onto my joints and limbs. I ran a fever of 102.7 for almost 4 days. I was extremely fatigued and really just laid in bed and prayed Lord let me die now. My Rheumy was out of town last week and the Rheumy on call insisted that I couldn't possibly be flaring with me on prednisone and MTX. This was his advice to my PCM so she felt there was no need to see me. She did run labs and low and behold my CRP had jumped up over 2 times where it was. My other labs are way way out of whack. Well I didn't go see her cause she wasn't going to offer me anything anyway. She's even refusing to take another x-ray of my feet. I think I need an MRI of the feet, but she's like no go.

Yesterday, my very good friend who I have known for 15 years now, invited me to her swearing in ceremony to take her oath to become a US citizen. She is from a former Soviet Republic and my daughter and I went there to visit her while she was home visiting family, there was NO WAY, I was going to miss yesterday. The ceremony was held at William Paca's estate in Annapolis, MD. He was one of the first people to sign The Declaration of Independence in 1776. The ceremony was held in the estate gardens but they did not have room under the tents for wheelchairs. I was placed directly in the sun for over 1 hour. Hubby, tried his best to cover me with our umbrella w/o blocking others standing behind us. My arms got burned though and I could barely breath as we had 91 degree weather with 86% humidity yesterday. We then went to a special lunch at a nice place and back to their home for drinks and cake. I was so bummed I couldn't do shots of vodka with everyone, nor could I have any kind of adult beverage. I sat there drinking water, I really started hating my life, my lupus is ALWAYS interfering with my NORMAL LIFE. Well guess how I'm feeling today, I feel like death warmed over. Of course, now my PCM will be gone on vacation next week. My Rheumy is still away on Temporary Duty for the Military. So I don't have a Dr to see and I'm totally miserable.

I'm just so tired of being sick. I'm having a very difficult time telling the difference between my RA or Lupus joint pain. My Fibro pain for my muscles that are hurting, and of course I'm having some systoms from my leukemia that are acting up. I just feel so overwhelmed and ill, I know I'm going to get sicker until I die and I'm dreading it. I can barely tolerate my life like it is now. How will I cope with it when I'm so sick I'm ready to die? All of a sudden I'm having panic attacks when I start to think about dying. I'm TOTALLY TERRIFIED that I'm going to suffocate at the end. I guess, cause I'm having issues breathing now it's wigging me out.

Sorry, to bother you all, but I have NO ONE to talk to, except my therapist. She never gives her opinion on anything LOL. Any suggestions for my tendonitis? My Rash, and joint pain? I know what I need for my leukemia, hope to get some blood on Monday, will call my oncologist first thing. If I can't make it through the weekend then we will go to the ER. I hope you all have a good night and great weekend. If you have any suggestions I would LOVE to hear them.

Hope you had a great 4th and thanks for being here, I know you are always here and I love you all dearly for that, you all GET IT.

Hugs,
Barbara
Posted 7/6/2013 10:26 AM (GMT 0)
I don't want to insult you by saying I know how you feel so i'll just say I really Feel For You

i'm currently being put thru the merry-go-round that is new  Rheumy and he is testing for Lupus on top of my other things and i'v been So Tired I just get days where I really Don't want to Know any more

I hope you can find a small bit of peace even a few minutes in the day that make you smile

Posted 7/6/2013 5:30 PM (GMT 0)
I'm sorry the cataract has thrown you into a flare. I wondered about the wisdom of such surgery before you had it, but I know you check and double-check with all your doctors beforehand, so I'd hoped you could come thru it without extra issues. Can you at least still see well from that eye?

Have they given you anything to help strengthen and heal the Achilles tendons? This is a condition that I am very familiar with; I can't imagine have both giving you trouble at once. One very simple thing is: As you are sitting, very gently lift your foot, toes first, leaving the heel on the ground. It looks like your foot is pointing up. If it hurts or you feel too much of a stretch up the back of your leg, stop. If you do this gently every time you think of it, it'll help before you know it.

The other thing is to apply ice if you've been out or done too much and the Achilles is throbbing. If you're like me, you hate applying ice, but it does help. Another thing, which may be too awkward for you to do, is to soak in a warm bath with Epsom Salts. This helps pull out the lactic acid which makes the soreness. Drinking lots of water also helps. (Sorry, no celebratory alcohols.)

Is it really worth trying to tell the difference between RA, Lupus joint pain, or Fibromyalgia? Unless you have different pain medications that work on different illnesses, I wouldn't worry about it. And if you do have different effective meds, trial and error will tell you. Have you ever tried to match where the pain is with your activity or the weather? Sometimes that helps me figure out what is acting up.

As for how will you cope with it when your body is ready to die -- you are strong and brave, and you have faith that you'll be in a better place, and you will go gently into that good night. I know that to be a fact. I have been at bedside for a number of deaths, and no one has struggled at that point. Have you talked with your family about how far you want to go with life? I mean in terms of breathing assistance, pain medications, that sort of thing? Maybe having a plan in place will help you calm your mind about some of these frightening thoughts.

Are you eligible for any of the hospice programs, or does your Military Health Plan prohibit these? In some communities they provide some services quite early for chronic patients. Heck, now that they've identified your leukemia more fully, maybe that organization can provide some help. I know it's hard to let strangers in the house, but I don't mean for them to provide physical assistance (although driving you would be great). I'm thinking more of a friend to drop by every week or so -- a real person who can provide actual hugs.

I hate for you to occupy your mind only with these thoughts. If my life was more interesting I'd be calling you with updates more often! Today I'm thinking of my mother, who died 26 years ago today. Some years I don't think too much about it, but this year it's on my mind since a friend just died this week. I think only now am I really beginning to realize how young, strong, and brave she was, and I wish I had known her better. But I know she'd want me to be out doing something, being happy, so that's what I'm trying to focus on today. Well, that wasn't much of a diversion, was it? Maybe I can find something more cheerful tomorrow.

Try to focus on the positive, my friend. Sometimes it's as simple as being glad the sun is shining, even when I don't feel like going out in it.

PS. No enjoying the sun today here, it's been raining for days and just started again! You know it's rained a bit too much when you have to pour the extra water out of the outside container plants! Hugs
Posted 7/6/2013 5:47 PM (GMT 0)
(((((((((((((gentle hug)))))))))))))

I'm so sorry you're having a hard time with everything. It's rough when our bodies rebel on us and it just seems to pull us down.
I know you're having a rough time from the high UV exposure and not feeling like you could really get into the celebration. But you were there to celebrate with your friend and I know she appreciated your presence.

See if you can get your husband to rent you some comedies to help cheer you up.
Posted 7/8/2013 7:51 PM (GMT 0)
 

Hi Barbara,

      I am sending you a very gentle hug as well.  I hear your frustrations and truly wish I was closer in proximity so I could deliver in person that gentle hug.  I know that baby steps and taking in each day as a new opportunity sometimes helps me when I am feeling miserable.

Love, Laura

Posted 7/9/2013 1:51 AM (GMT 0)
Hi sorry it took me a bit to respond. Let me tell you I've been not feeling well at all. I knew I was in a flare but man oh man it's been tough. I've been trying to get things completed around the house as our landlord needs to come and make a repair in our living room. Mind you it's not that the house is dirty, but I do see cobwebs better now that my right eye is fixed.

I'm so frustrated with my Dr's. My PCM is out on vacation this week, and I'm in desperate need of another chest x-ray. I KNOW my ribs are broken on the left side again. I feel them pop when I move, and the pain is like a 12 out of 10 when I sneeze or cough. The last x-ray that was done was completed on May 29, ordered by my Rheumy. I had had my car accident on the 22nd and felt my ribs were hurt. I saw my PCM two days later and she couldn't read the x-ray as it was to dark to see things. The radiologist report is STILL pending and no response has been given to me.

Well I call my Rheumy today to try to get another x-ray, his nurse told me that he was leaving on vacation and I would either have to go to the ER or wait for my PCM to return. I asked when the Rheumy would be back and I was told August. Needless to say I'll be getting NO WHERE this week with my ribs nor my Achilles tendons.

I truly believe there is more than tendonitis going on in my Achilles, I noticed that I can not pull myself up onto my toes. You know, like trying to reach the top shelf and you go up on your toes, I can't do that at all. The ankles are very very swollen and my whole right foot is swelling. I'm worried that the scar around my skin graft of my right foot is pulling apart from all the inflammation it. I need to call in the AM for an appointment with my plastic surgeon to look at my foot. I'm hoping he'll send me to see an orthopedic Dr ASAP. I'm set up for Physical Therapy but don't start until the 29th of July. I'm wearing my splints at night while sleeping. I wear my ankle supports and have the heel cushions in my shoes. I'm staying off my feet as much as possible and I'm stretching my Achilles tendons six times or more per day. Still I'm in terrible pain and miserable.

Just wanted to say thank you for all your love and support. I'll keep you updated on everything as I try to get an x-ray and see an orthopedist. I also saw my dermatologist today too, the radiation on my thumb worked really well at first and it was looking so much better, well now the wart is back in full swing and my thumb looks terrible again. The Military Radiation Oncologist is unwilling to give me anymore radiation on the thumb. My Dermatologist wants me to see one of theirs at the Medical Center he's associated with. He's hoping that they'll give me more radiation. More to follow on that one, if they don't do something soon, I'm gonna get drunk and cut the thumb off at the knuckle myself with my meat cleaver, LOL. I told that to the Dr and his PA today, he said don't do that and don't lose hope, I'm not giving up yet, so you shouldn't either.

Will check in Wednesday, I see my Oncologist to hopefully get my game plan for my treatment of my leukemia. Oh please say a prayer, I received a notice in the mail from SSDI wanting for me to provided the dates, names, and reasons, for all appointments, tests, procedures, medications, surgeries, and hospital stays since June 2011. They asked if I was better, the same or worse, if I had worked or gone to school or did job training, and if my Dr. felt I could or could not work. After they receive all this info and their form back they'll let me know if I have to do a FULL REVIEW to keep my SSDI. Man I hope when they see how many appointments alone I have it will be enough for them to just approve me.

It took me over 3 years to get my hearing before a judge and another 6 months before I received my money. I really do not need any additional stress from SSDI. So, please positive thoughts and prayers. Thanks and I hope you are all doing well.

Hugs,
Barbara
Posted 7/9/2013 2:20 AM (GMT 0)
 

Hi Barbara,

       I will definitely keep you in my heart and be thinking positive thoughts.  I feel like you have been through the ringer.  What I admire about you is that your sense of humor always seems to shine through.  It is quite the inspiration!

Love, Laura

Posted 7/17/2013 4:48 AM (GMT 0)
Wow! Im so glad people like you and others are sharing im new here but i understand this all but i still feel like a late bloomer in this but im grateful for everyone thats sharing because it makes me feel like im not alone !!!! Love and prayers is something i know we all need !!!! Stay strong im trying too as well!!!! Looking for answers too!
Posted 7/19/2013 1:21 AM (GMT 0)
Barbara,

Please know that I am praying for you, specifically for your pain to be decreased and for your SSDI, as you requested.

Also, please call me real soon when you have the energy and the time.  I want to chat with you.

I love you kiddo.

Lindaloo

 

Posted 7/20/2013 5:15 PM (GMT 0)
Praying for you (hugs)
Posted 7/22/2013 6:45 AM (GMT 0)
Hi Laura, Shonell, Linda, and Tina:

Thank you all for your kind words. Shonell welcome to the lupus forum I hope that you're getting all the answer you need really soon.

Linda, as soon as I'm up to calling I will. I've not been well the past couple of month. My Achilles tendonitis is just so bad I'm totally miserable. My Rheumy is out of town until the middle of August and my PCM is reluctant to prescribe an increase in my steroids to help with the swelling. I will call you soon though, or you're welcome to call me anytime. If I'm unable to talk I'll let the machine pick it up.

Laura thanks for all your prayers. I try to find the funny side of things in situations. If I didn't, I think I"d be in a padded room trying to cope with my life as it is.

Tina thank you for your prayers too. I pray for everyone here every night when I go to bed. I love my HW family and w/o you all sometimes I know I'd lose my mind, if I didn't have you all to turn to. So I thank you for all that you've done for me. Still battling issues with my cataract surgery, the Dr didn't get my near sightedness fixed right and I may be facing another operation on my right eye. My left eye will be operated on August 5, 2013.

My leukemia and I are having serious issues and not sure where we are headed, I'm guessing I'm the one whose just along for the ride and the cancer is in the drivers seat. As for my RA/Lupus there are status quo. I'm never gonna get out of these flares I think. I've taken every drug that's available out there and I've taken everything to treat both disease and I'm still flaring. I know I'll NEVER come off of steroids and I just don't know what to do. My dictirs have told me I'm on steroids for life period. I just hate it right now, I'll pull through this depressing period sometime soon, I hope.

Well, it's 2:40 am and I need to try to sleep. I hope that you are all sleeping and have a great day today. I have a 10:00 appointment so wish we well. Take care all and I'll keep you posted as I know more.

Hugs,
Barbara
Posted 7/22/2013 3:06 PM (GMT 0)
 

Hi Barbara,

     As usual, thank-you for your kind thoughts.  Like you, I will be on steroids for the rest of my life.  I ran out of options after the Benlysta was unsuccessful and am now back on Prednisone.  I also take Plaquenil and the occasional pain med when the discomfort from the arthritis gets to be too much.  The orthopedic surgeon started me on Glucosamine/Chondroitin, and much to my surprise, it seems to be working....unless it's just my imagination!!!  I don't like the side effects from the Prednisone, but it's keeping me able to work, play some and live life.  That, I am grateful for.  I had to learn to let go of the weight gain and chubby face; meaning not be so pre-occupied with how I look physically.  It really bothered me a few years ago when one of many students commented on my weight gain.  They know that I have Lupus, so I always use those moments as an opportunity to educate them about the disease.  I do try to look at my existence on this planet through a lens that embraces tranquility and definitely includes maintaining a sense of humor about living in the moment.  I always appreciate your updates and heartfelt comments.  And I ache when I hear that you are suffering.

Love, Laura

Posted 7/23/2013 8:42 PM (GMT 0)
I am sorry that you are having a tough time. I am too. i called my Rhemi and the soonest they could get me in was next Tue. I had just started trying to work again. So of course it was on of the 3 days I work. I had to trade with someone at work. Which messed things up at home because I drive my mother to the doctors and she has an appt. the day I was forced to trade for. Every week between the two of us is atleast two doctors appts. I hope you get so relief soon. I will pray for you.
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