It Never Seems To End!

Hi All:

Sorry, I've not posted in a bit, I've been dealing with loads of issues and quite honestly getting here required to much of my energy.

I'm here now and will get you all caught up in the World of Barbara Turns. I swear my life is like a HUGE soap opera and I can't get off the moving and spinning world. I'm so totally fed up and sick with it all. I'm just sick and tired of being sick and tired.

I know I promised David that I'd hold on and he'd hold on too. However, David, I don't know how much more I can handle. I've been following your posts and honestly I'm not sure how much more you can take too. We both are hanging on by thin threads and I feel as long as each of us is holding on to the others threads we're steady. Without that, I think we'd be adrift at sea in huge waves.

I'm very worried about your weight loss David and I hope that you will go to the correct Physician to figure out whats happening inside your body. Has there been any news on the MRI of the lump on your face yet?

Please know David, that no matter what I'm here for you and if you need me to listen to you vent for hours that's fine with me, I'm here for you, I may not post often but I read and can email.

Well, as for me, my pain is thru the stupid roof and I honestly don't know where to turn or what to do with myself half the time. I'm first so lonely and sad I MISS MY CAT!!!!!!!!!!!!!! I feel as if my family is against me and find excuses for reasons WHY we can't get one. First, it was well we're not ready emotionally yet. Then when I tried again, I ended up getting my feeling so hurt, now I'm giving my hubby the benefit of the doubt and assume he didn't say what he did on purpose but............ I certainly would have NEVER made a comment like he did to me.

My daughter doesn't want a cat at the house either yet, said it wouldn't feel right with another one here and it not be her kitty, Grady here. So, okay I get this all, I really do. However, I'm all alone day in and day out. Once my hubby comes home I'm still alone, I sit in our bedroom all day and night, unless I'm seeing someone for a medical appointment or a friend that see me every two weeks for lunch. I'm alone all day long!!!!!!!!

I discussed this with my therapist and she suggested that I let hubby know how lonely I am and ask again. So today I did, and now I'm getting from him, "well my cough is gone and my lungs feel better". I think I'm allergic to cats, now we've been together for over 30 years and he's had a cough a long time. Never seemed affected by the cat until now. So, I did as my daughter suggested a couple of months ago, asked him to get an allergy test done to confirm that he's allergic to cats. No need to assume, lets make sure, right?

He flat out refused to do it. Then put on me that our daughter is allergic to cats, which has been confirmed, and said do I want her to suffer. She's allergic to wall to wall carpet too, but does that mean we're going to move over it? I don't think so, I've spent the whole day crying and being upset. I feel no one cares about how I feel. I have nothing to live for anymore, spouse ignores me, kids ignores me, my parents are dead, and my siblings have forgotten I'm here. Why should I continue to live? Give one good reason, just one, cause I can't find one.

I started PT finally on Tuesday on my foot. I did see my Orthopedic surgeon last Thursday and he informed me that he thinks I've got a mass/tumor in my foot that was operated on. That I am walking on my heel bone, that the fat pad that covers it has moved enough or thinned so much from my use of steroids that I'm walking on the bone w/o any padding. Guess you can imagine how wonderful that feels for me.

I've been fitted for special orthopedic inserts for my foot. If the padded foot doesn't improve then he'll open the foot and shave my heel bone down. I told him between the heel bone, the possible mass, he might as well just remove my foot. He informed me not to joke about that, because he might just have to do that to me.

My shoulder is still really bad pain wise and I can't move it. Getting PT for it too, lucky for me my surgeon wants another MRI with contrast done on my foot. Therefore, my Rheumy agreed that it was stupid to make me wait for a possible MRI on the shoulder. So, next Thursday I'll be getting a foot and shoulder MRI's done. Please let them figure out whats wrong in that foot and shoulder. I feel so beat down from it all and just am worn out. Next week, I have some sort of a Doctors appointment EVERYDAY Mon-Fri.

I have ZERO quality of life , this is NO WAY to live for me. I just don't get why me, what on earth did I do to deserve to be this sick. I've been sickly my whole dang life. What did I do, inside my Mother's womb to deserve to be sick like this? I'm ready to join my Grady, they say your pets wait for you to join them. I want to be with him and my parents I miss them all so so much, I want my pain to stop, I want to feel better, I want to be normal again. I don't want to sit around and wait to die anymore, I'm over it let's just get the show on the road.

My counts are worsening, and I'm not sure what my oncologist's plans are for me. My back hurts so bad, I did manage to see pain management, and they agreed to do injections into my SI joints. The catch is not until October 31, 2014. I can't stand on my feet for more than 10 minutes, can't sit for more than 30 and laying down is really difficult. If I take my pain medication and knock myself out then laying isn't to bad and I can manage to sleep for a bit.

Well, I guess I need to quit this pity party of mine and try to sleep some. I rarely go to bed at midnight, but I'll try tonight. My toes are cold and numb maybe with the heating pad I'll fall asleep soon. Thanks for listening everyone, I don't know what I'd do w/o having you all here for me.

Hugs,
Barbara

Hugs Barbara, don't give up!! Find your inner feisty person and let her rule for a while :)

I'm so sorry you are in such a horrible place right now, sending some love across the miles and some understanding, two things it sounds like you need! I wish there was more I could do :(

Barbara,
I'm so sorry you're hurting. I'm with the others in sending hugs your way! I admire your courage and strength in handling your illness's. Hang in there Barbara!

Wish you well,
Teedaalee

Hi Barbara. Yes, it never ends for some of us, but especially for you Sweetie. I think I am the depression pro on the lupus forum. My suicidal thoughts got so bad recently that I was minutes away from walking to my psychiatrists' door and asking to be admitted. I had an appointment with him the next day and held on, which is good because he's a wizard when it comes to changing my psych meds. Have you talked with your therapist honestly about how hopeless you feel and asked your psychiatrist if he can change your meds? I've spent many an hour in bed entertaining methods of suicide so that I would be the only person who knew what happened. For me everything is much easier when I don't feel hopeless, worthless, and suicidal.

As for pets, have you considered getting a parakeet? Get a cage that has something to prevent him (blue on top of the bill) or her from kicking seed everywhere and a pull out tray so you could easily change the paper. Buy a stand and you could keep it by your bed. With patience they will sit on your finger and even say hello. Downside: you need to feed it seed and grit/gravel, change water daily, spritz it with a water bottle, and change the paper. Of course if your hubby is against this or you hate birds all this is moot.

I don't know what else to say except I'm so very sorry that you never catch a break. It's so incredibly difficult to think ahead to a better time when all you feel now is pain and hopelessness. For me it's often impossible without changes in the dose or kind of psych meds.

I think of you often. I don't pray nearly as much as I think I should, but you are occasionally included. I met you once, which was great, but I'm not a big phone talker so I can't be of much help. Regardless, know that I love you. Donna

Barb, my gut feeling told me that you had recently posted here again, so I left off posting at HW PC, and decided to come here.

So sorry you are still so deep into trouble and pain, but I almost wouldn't expect anything else at this point. I know (speaking first hand) that its hard not to want to give up. I threatened to this very week. I told my wife, I was sick of all of it - the pain, the treatments, the doctors, appointments, etc. I was sick of constantly being in a severe state of suffering. I was mostly speaking out of utter frustration and tiredness. Somehow, I managed a few good hours of sleep (rare for me), and felt less despairing by morning. This is why I can only worry about one day at the time, nothing more.

I wish more could be done to help you, but I don't know what, as you have such complex and multiple problems.

I see the VA PCP on Monday, and I am planning on turning over the weight loss issue to them. I feel I have gotten no where with my regular doctors, they are clueless, and have no answers. I am now down to 131 lbs. Have lost 119 lbs. since I first started seeing my main doctor, which is approaching half my original weight. And I still have zero appetite after almost 6 months. Just never ever feel hungry.

I have the major oral surgery in 2 weeks, I so want to get that behind me, even though I know in advance, that I will have a rough 4-5 months of recovery time before I can be fitted for dentures, but at least all those rotting teeth will be out of my mouth. At least it will be a step in the right direction. It's hard to even think about eating when one's teeth are all crumbling and falling apart.

Perhaps its time we did have that long overdue phone call. Hard part would be finding a proper time that would suit both of us. I don't get up till at least 9 AM, and lately I have been leaving the house by 10, and not getting back from treatments till around 4. Then I am napping till 630 or so, until my wife comes home. Perhaps a weekend time slot would work best for me. Tell me what you think.

Since I refuse to give up, I must ask you to keep your word and not give up either, even though I know it gets harder and harder for you with each passing day. But life is still worth it, to me at least, even if suffering all the time. We will all see death one day, its written in stone, but until its my appointed time, I plan to keep on doing the best I can, with what I have, each and every day. It's all I can ask of you as my friend, just never give up, never keep trying.

David

Hi Joy, Acquiesce, Mary Ann, Teedaalee, Diane, Donna, UA, David, and Chart:

I first want say thank you for your support and caring thoughts. I'm sorry took a bit to respond, I've been sick and honestly I didn't want to move at all. I just feel so badly that laying in bed is far preferable to getting up. However, I get out of my bed and do at least one thing a day.

That being said, here's the latest. I saw my dermatologist yesterday, hoping that he would perform the incision biopsy that is needed to figure out if I have Lupus profundus, or Lupus vasculitis. The two conditions are treated way differently. They need to get down into the fat layer of my skin to determine this. I had the punch biopsy done and it was inconclusive.

I noticed over the weekend that my leg (yes the one that had surgery) was really red and hot above my ankle on my shin. On Monday I began to have severe shaking and chills. So, yesterday I showed my dermatologist my leg. I saw the Resident first and he said, "I think you have a joint infection." My ankle looks almost like a grapefruit it's so swollen. I told him that the ankle has been swollen a long time and I'd started back to pulmonary rehab and it's swelling even more.

He then put his hand on my shin and went brought my dermatologist into the room. Who said right away, "you have cellulitis in you leg." He has put me on a strong antibiotic for the next two weeks. Told me that they can not do my biopsy while I have this bacterial infection in my leg. So, I'll have to wait on that part, he said that if I'm no better in 5 days to let him or one of my Doctors know this. He is a civilian doctor and the rest of my doctors are military doctors. He also warned me that because I have no immune system that I'm more susceptible to getting pneumonia because the infection. Of course, I'm the pneumonia queen and I've got terrible luck. Anyone want place a bet?

Today I had my MRI of my ankle/foot. They also did my shoulder at the same time thank goodness. The bummer is that my foot/ankle surgeon wanted images with contrast, they couldn't get an IV in me. They stuck me 8 times before giving up. If they would have had a nurse that was certified, at the military facility I was at, they could have used my port. Since the contrast for MRI isn't at all like the stuff for CT. I do not have a power port so I can't be given contrast for CT.

I'm betting someone thinking why not get a power port? Well, I've got the huge blood clot in my SVC and there is NO WAY they want to attempt to put another port in my chest. So, I make do with the port I have. It works well for blood draws, and really well for IV's, my blood transfusions, which I'm getting frequently, and IV antibiotics.

As for my foot, I can't begin to express how badly it hurts. My shin is so painful from the cellulitis that I can't stand to have a sock on, a pair of pants touching the skin, or my blankets lay against it. The heel of my foot is so painful I never want to put weight on my foot. The fat pad has moved and I've developed a callus on my heel about the size of a half dollar. It's peeling layer by layer off, each time it bleeds and I'm now it's down to an open sore on my heel. Needless to say that makes my pain worse off. My shoulder is still as painful and the PT so far isn't doing much. I'm only pulling my shoulder blades back and holding for 5 seconds 20 times. They want to know if I have something torn in the shoulder before doing anything else to it.

I see my oncologist and PCM next week, so hopefully I'll know if my rotatar cuff is torn or not. How my counts are holding and if I need some blood. I've been very tired and I think a need a couple of pints of blood for a slight tune up. My orthro inserts came in the mail today and I hope that they help with my heel pain. Of course, they are a size to big and need to be cut to fit in my shoes. I'll have to take them to the clinic and have them cut. Have to say that the gel heel cups are softer than these inserts. Surgeon said they would pad my heel, the inserts are hard a heck. I'll do as he requested but I think this will hurt and be a waster of my time.

I just want to say that I thank all of you for supporting me I know it seems like all I do is complain and never have good news. My health is bad and I'm worsening. I've been told I'm going to die of my leukemia IF I don't die of an infection sooner. My oncologist keeps encouraging me to accept that this is AS GOOD AS IT'S GOING TO GET PERIOD. That I need to be alright with that and prepare for harder days ahead.

I'm having a hard time with the "vagueness" of you're gonna get worse. Okay, when, how much time before I do, when do I have to start traditional chemo, etc. He can't give me those answers, but he reminds me that day is coming. I guess that's partly why I want another cat so bad. When Grady was alive he kept me busy during the day and I didn't just sit around and think about how badly I hurt or whatever. I asked about getting a bird and that was a NO GO too. Hubby informed me that I was being a "bully" about wanting the cat. For those of you that know me, you know I don't "bully" anyone. Hubby suggested I change my approach and I might get a cat. Not sure what he's wanting but I'll be figuring it out soon I promise.

Well, that's all the news here. I wanted to let you know how I was doing. I'll try to post every other day if possible. David, I'm going to do a separate post for you. Please keep me in your thoughts and prayers, that something works in my favor right now. Just not sure how much more I can take. Thanks again for being there for me, you'll never know how much it means to me

I hope that you all have a good Friday and have no pain, no illness, no nothing, but bright skies and great weekend. I'll post soon and you all take care of yourselves.

Hugs,
Barbara

Barb,

Thank you for the well thought out and kind response. Under your current circumstances, I know it takes a lot out of you to compose, let alone, write a lengthy reply, but I sincerely appreciate it.

I read all of the posts to your threads, and I am glad that you have some many sincere friends and supporters here at HW Lupus. That makes me feel better for you, knowing you have that level of support, when you need it the most. So I thank each of you "Barb" supporters, from the bottom of my heart.

BTW, you should get another cat. I can't think of a good reason why you shouldn't. It may never replace the deceased, but it would give you something good to look forward to. I am a cat person by nature, and have two mostly outdoor cats, and one dog (which I can barely tolerate). If it were up to me, I would get rid of the dog, and get a new indoor only cat for myself. Thought about getting some parakeets, but birds are ever so messy, and neither of us need to be breathing in feather and bird debris.

It still grieves me to know that I will miss my youngest son's marriage. Its in one month, but between my pain, fatigue, cancer, treatments, and the pending surgery, there is no physical way I could endure a week long cross country trip and all that it will entail. My son is acting ok about it, but I know it really bothers me that I can't be there for him.

I am thankful that my daughter will be staying with me the week that my wife will be gone to CA for the wedding. My wife was beside herself thinking that I would have to be here, post surgery, all by myself. I don't expect to need much physical help, but it will be nice having her company to help pass the time.

I dread the hyperbaric treatments post surgery, I have to have 10-15 of them after. They are so hard to endure now, so I can only imagine how they will be when I am sore and achy post surgery with as many as 100 stiches in my mouth and gums. Rather not think about that at the moment, kind of scary, not sure how I will get there, and make it back every day, let alone spending 2 1/2 hours a day in the chamber. I still have 8 more treatments to go before surgery. Today was number 12, so that made me 60% done.

It's funny how we came to know each other in retrospect, with us being essential from 2 different forums, if I remember rightly, it was when we each use to post at HW CP. Correct me if I am wrong. But regardless, I am glad we came to know each other, and to be there to help the other through such horrific times in our lives. I believe everything in life is meant to be for a reason.

Hope you are resting well tonight. It's almost 130 AM here, and I am too well awake. Stuck with simple scrambled eggs and a piece of toast tonight, and some apple sauce. Not many calories, but the best I could get into me. My greatest fear of the weight loss, isn't dying of starvation, but it being found to the be the cause of some hidden cancer other than what I am currently fighting with the advanced prostate cancer. It would explain the complete and utter lack of appetite for almost 6 months now.

Will check back tomorrow to see if you are posting. Take care my special friend.

David

Barbara
And David

Prayers continue ..

Barbara - been watching for your update..
So sorry about the passing of your friends...may your memores of happy times spent w/them sustain you.

Hi David, Diane, and Chart:

Thank you all for posting to me. I'm sorry I've not been posting but the past few days have been pure dog do do for me. My celluiltis is killing me and moving up leg. I just don't seem to be responding to my antibiotics at all.

I put a call into my foot surgeon and emailed photos of my leg to him tonight. I'm going to be at the medical center tomorrow to see my primary care doctor and figure IF the surgeon wants to see me, I can go over to his office. He's just over on the other side of the floor.

I saw my oncologist today and I'm so close to needing a blood transfusion. Because I'm having so many issues with my breathing and all the stuff that bothers you when you're really anemic and need blood, my Doctor has raised my threshold for a blood transfusion.

Most patients get one when their hemoglobin is down around 7 to 8, I'm transfused at 9.0 period no questions asked. The blood bank fights this all the time, but he always wins. Even if I'm inpatient and only at 9.0 the team caring for me will call him at home and have him make a call to the blood bank.

He also, gave me a new medication for my poor mouth. My tongue is totally raw and cracked open all over the place. I can't eat anything with a lot of salt on it nor spicy food, anything with vinegar, etc. I even have to brush my teeth with children s strawberry toothpaste due to the pain. Please pray, hope, etc that it works for me.

My rash is getting worse and I'll get my biopsy next week, which can't come fast enough for me. Even though it means another scar for me. They have to do this biopsy in same day surgery. My oncologist wants the to test the biopsy for T cell infiltration into the tissue as I've got the LGL leukemia. He's worried maybe my cancer has now spread into the tissues of my body.

He apologized to me and said he wished he could do more for me at this time. Until my LGL worsens and becomes totally unstable he's not going to treat me with the heavy duty chemo yet. Said the day may be coming quicker than he thought but to hang on and call him if he can do anything for me.

David I saw your post on the PC forum and I'm thankful that the VA PCM is taking over things as far as your "wasting away" I personally think you're Dr.waited to long to really try to figure this out. I'll be praying that they figure it out and right now. If you have any questions let me know.

I'm worried that you're to weak for your upcoming surgery, but I know you're ready to have this done and over with. I'll be praying for you daily and I'm glad your daughter will be staying with you. I hope EVERYTHING GOES WELL for you and I was happy to hear of some sort of good news as to the VA taking over something so important.

If they can't figure it out (the VA) maybe you'd consider coming to NIH. They are very good up there and they will pay your travel expenses. I know as I'm in one of the medical studies, since I live near by now they do not need to handle travel expenses. However, should be move to say CA they would pay to fly me back to Bethesda once a year to be seen.

Well, I need to go, I have pulmonary rehab at 8:00 so need to try to sleep some. You all have a great night and I hope that you all have low pain tonight and have a great day tomorrow.

Hugs,
Barbara

Thinking of you Barbara and sending a gentle hug your way xo

You too David, I hope you both get some relief today

Hi Barbara. Sometimes I'm just at a loss for words regarding all the awful health problems you endure each day. I'm sorry you can't get a cat or a bird. Unless your husband simply doesn't want to clean up after a pet or doesn't want to be burdened by the pet after you pass on, there is no logic in his decision. One would think that he would want to give you some pleasure. Oh well, shower him with kisses and thanks and he may come around. Again, I'm sorry you are in such pain and I hope you find some relief with the transfusion. Love You Sweetie. Donna

Well, crap, Barb! I was hoping the cellulitis was going to behave and disappear in a timely manner. No such luck, I see.

I hope you get some blood today and that your stomach settles a little so you can keep something down.

Hugs.

Barb,

First time back on line post my recent surgery. Sorry you still aren't really feeling any better at the moment, but hope, trust and pray you get some kind of break.

Still here for you,

David