I'm Flaring Big Time

Hello Barb,

Had a feeling something was going on with you, so I came here tonight to find your latest thread.

It was a hard one for me to read and digest. Sounds like you are in the midst of a major bad spell and emotional disaster. I feel so badly for you. Just when one thinks you have hit rock bottom, you fall further still.

I understand one thing you said, and it really stood out to me. The part about where you just have to accept the way things are and how you feel, because this is as good as its going to get.

That's an easy thing to tell someone, but a hard thing to do in reality. I don't consider this thread to be a vent, I see it as you simply expressing the latest reality for you in your life. And its a tough one to swallow.

That's pretty well what the neurologist told me, after I spent 3 months or more of extensive tests, scans, and blood work. That I am going to just have to live with all the pain and fatigue, and that there is really no hope of improvement in the future. If anything, it will continue to worsen over time, pretty much you situation too.

Then the doctor washed his hands with me. When he first met me, he said he liked the challenge of a difficult case, and that he wouldn't give up on me. Well, he did give up. After running all the standard neurological tests, he couldn't come up with anything to diagnose. So that's that, and he's through with me. This was exactly what I was afraid of when I first started with him.

Wish more could be done for you. You have way too many serious ailments and complaints going on at the same time. It's hard to say which is worse in your mix of problems. Then each ailment affects the others, and some of your side effects and complications would be difficult to separate and fix.

Will continue to pray for you, and to keep you in my thoughts. You are not alone, you are surrounded by people even here at HW that care and love you, and want only the best for you.

Remember our deal. I don't give up, you don't give up. We got to keep on fighting, all the way, no matter what lies ahead.

I am here for you, anytime.

David

David and Diane,

Thank for your replies from both of you. Diane, glad to hear that your Internet is up and working again. I hope you are feeling better and you were missed here too.

David, yep you and I are so alike in some ways. I read your thread about the neurologist washing his hands of you. Very upsetting to read that. I know EXACTLY how you FELT when he told you, this is as good as it's gonna be.

You are right those are easy words for a Dr to say, but not EASY TO COPE WITH. I see a therapist weekly to ATTEMPT to accept and TOLERATE the PAIN & SUFFERING I deal with daily. If you asked me is it working, I'd respond somedays it is.

Right now, I'm really struggling my foot is KILLING ME, the splint has made my foot hurt WORSE. I'm still coughing like crazy and the junk in my lungs is like paste. Feel as if I'm a couple of pints low (meaning blood). I see my oncologist Tuesday morning, hopefully he'll have a game plan for me.

I see the Radiation oncologist this afternoon, I'm going to go ahead with radiation on 3 of my other fingers that still have warts on them. Yes, the radiation burns were terrible and I'm dreading that but my thumbs are looking great and touch wood NO WARTS have grown back on them.

Just wanted to give an update on how thins are. I'm VERY fatigued, pain levels are at a solid 8 out 10. I'm sleeping all day and evening then up late at night then back asleep at around 9:30 am till afternoon.

Will give another update once I see my Drs this week. Hope everyone has a good week, with low pain levels and sunny days.

Hugs,
Barbara

Barb, I am still here, still thinking about you, and hoping and praying you get some kind of relief, some kind of improvement, no matter how small it may be, anything to help your through this rough period your are going through and enduring.

No one ever said life was going to be fair, and all we can do, is to keep on trying, keep on living, and never ever giving up hope. You are such a fighter too.

Just never feel alone in your sufferings, you are not alone. So glad to see you have so many quality supporters here at Lupus and elsewhere. We will always be there for you, no matter what.

David

Quick update:

No improvements here. Have now lost over 40 lbs since Jan 1. Losing about 1/2 to 1 lb per day no matter what I eat or don't eat. Never feel hungry and if I eat, I pay for it with bad stomach cramps and even worse back aches. Don't have much incentive to want to eat, almost not worth the hassle it causes.

My fatigue is at an all time worse, start out about a 5-6 and within 2-3 hours it's maxed out. When I push myself, even the smallest of work or errands, I pay heavily for it. Lately, when I hit the "wall", I get heavy chills, which is most unusual for me.

David and Diane,

Sorry it took me a couple of days to respond, I'm sure you know how things get.

Diane, you are very correct,I really shouldn't fuss so much as I know there are folks worse off than I am right now. it's so hard to manage day in and day out with the pain. Then to know that unless I get a miracle healing from the Lord, I will only continue to worsen and get sicker.

I certainly understand your feeling of distrust of people and spending more and more time alone. it seems that our friends and loved ones (not all) get tired of our illness and the kinda drift away from us. I'm sorry that you're feeling that way.

David I'm VERY WORRIED about you. The weight loss you are having isn't normal and I know that you are aware of that. I just hate it that your Dr can't figure out why. All I can do is say prayers for you and pray that the weight loss stops NOW.

As for your fatigue, man can I relate to that. I have some days when I'm lucky to crawl from my bed to the bathroom in our room. I mean I need only get across 25-30 feet, but on bad days I'm lucky to get there.

I like you push myself and pay for it dearly every time I do it. I've always wanted to set an example to my daughter, that NO MATTER HOW SICK you are, you get up out of bed and accomplish some small or big thing for the day. I certainly don't envy you with chills and such.

You are not alone either, I'm always here for you too. You know how to contact me. I'll be keeping you both in my prayers.

Hugs,
Barbara

Chart:
I'm so sorry to hear that you're not doing well at the moment. I will keep you in my prayers and hope that you get feeling better really quickly.

Yep, our girls seem to always need something when they can't get it on there own they call good old Mom to help out with the situation. Nikita will be home for about 26 days starting May 31 and then she'll head back to school at the end of June to work a summer job. Needless to say I won't get much time with her, but she said would try to help me out IF I can get my surgery either towards the end of May or beginning of June.

If I have the foot surgery I'll have to be totally non weight bearing for a minimum 6 weeks. I know as of today the foot is hurting me so bad it's at a solid 9 out of 10 and I just can not continue to live with this kind of pain day in and day out. Not to mention that I limp something fierce and wearing the splint that was made brings tears to my eyes

I went yesterday and had my molds made to restart radiation on Wednesday to treat the warts that are on only two fingers. Luckily, on these fingers, the warts are only on one side and are no where near as big as the ones on my thumbs. So hopefully that means I either won't require as much radiation or less treatment times. I knew they were there when I did the first treatments but I/we wanted to be assured it was going to work, before doing any other fingers.

I'm also praying that the radiation burns will not be ask horrid as the last and I get thru them w/o feeling to badly. I'm still coughing and so far the medication my oncologist gave me isn't working. My ingrown toe nail that they removed is still quite sore and still isn't looking to good. I sure hope I can heal just this little incision. If not, my oncologist may be right and I better not do the foot surgery. He's very worried I'll not heal and get an infection in the incision. Which I know I can potentially die from an infection, so I totally get why he's so worried. My surgeon is worried too, he admitted that he wakes up in the middle of the night thinking about the possible surgery on me.

However, I don't know what else what to do with my foot. I'm truly ready to cut the thing off, and yes I know with me on blood thinners, I just might bleed out before the paramedics could arrive. Overall, I feel crummy and my fatigue is terrible. I'm just not sleeping well and waking up with the cat so early every other morning is taking a HUGE TOLL on me physically.

Speaking of that I've been up almost been up 21 hours straight now. I was awakened by the cat on Friday May 2, 2014 at 4:45am and it's now 1:32am Saturday May 3, 2014. Guess I better try to sleep some as I'll have to get up at 7am to give him prescribed medications. At least I don't have to give him medication at 5am.

Hope you all have a good weekend, may it be filled with sunshine, (but please stay out of it). I really pray that you do not have any pain or have any feeling of being sick this weekend. Lets just pray we ALL have a good weekend. Take care and thank for all your loving support.

Hugs,
Barbara

DianeB that is so true, we can only hope people will do what is right. But it's also nice to be able to help our kids out. I sure hope things get better for you and your kids...

Barbara, many more prayers and sure hope you'll be able to get the foot surgery! Stay strong your a great friend.

Prayers

Barbara, Good luck with the foot surgery, posts when you can you are in my prayers...I posted again in the Chronic pain forum about what I just went through, it's been a heck of a few months...Hope Nikita calls you this weekend. Jazzi called last night and she finally did her certifications for teaching woohoo...
Prayers...

Yikes! Sounds like Thursday is going to be a really busy day for you. Hope everything goes well and maybe you can rest a bit Friday!

Barbara

Know you had a long day.. just wanted to hop on & say hi & that I hope you are able to rest well tonite.

Hugs

Best of luck on the foot surgery and I hope your thumbs heal up quickly.
(((((((((((Mega hug))))))))

Hi Barbara,

It's interesting that you mentioned your arthritis bothering you. For some strange reason mine has ramped up in the last 6 months. It's been causing me grief, mostly in the form of pain and increasing limitations on what I can do physically. Last night I was propped up on the couch with enough pillows to serve a class of first graders. It helped some. I had the most excruciating pain in my feet and hands. I am also experiencing more pain in the lower back and in my hips. Both of those are making it uncomfortable to sleep at night. I have tried everything from pain medication, Valium at night to decrease the muscle spasms around the spots where the degenerative disc disease is so bad, warm baths, pillows to brace myself, silly comedy shows to distract myself and red wine. Nothing really helps, and it is getting worse. The weather may have something to do with it, but it could also be the stress of work, which has been phenomenal lately. In fact, I flared big time last night...the consequences of work stress and pushing myself yesterday to get a long list of chores done.
I am frustrated because nothing seems to really help, short of finding a log to crawl under...if I could only do that :). I feel what you are going through with the discomfort and the running out of options that invariably happens. I care about you and hope that you are feeling a little bit better today.

Love,
Laura

Barbara
Just thinking about you.. hoping you are doing ok..
As always, prayers

Hi Laura, UA, Diane, and David:

Thanks all for checking in on me. David I know you have so much going on with your body and not knowing just what the heck it's doing, you can't worry about keeping up on me. I find that at times focusing on others makes me forget or at least push into the back of my mind my issues or pain. Does that make sense? I'm just so sick of hurting all the time.

It's now almost 2:10 in the morning and hubby just hollered from our bedroom, worried that I had fallen asleep. He worries all the time about me fallen asleep w/o my VPAP and dying. I know he cares but gets getting on my nerves. To me if I fell asleep w/o out and I did pass, well......I don't think it would be a terrible thing, but he does. We are still trying to get an answer out of my pulmonary doctor as to whether a service dog would be good for me to have.

I have to say today was a very difficult day for me. Today was my last radiation and heat treatments. The radiation part is a piece of cake it's the dang heat treatment that hurts me so bad. You can already see the radiation burns on my fingers and they are swollen and burned. Really not looking forward to having it all peeling away.

My back was hurting me so back this morning I couldn't even stand up straight. I did get a massage and Pam worked just between my shoulder blade down to my butt check in the middle. Had a lot of reliever for almost 6 hours. They gave me earlier 2mgs of some pain reliever and at least it took some of the edge off for a bit. My foot where it's hurting the worst has now developed a huge lump in it. I have no idea what it is, but I do know it's there.

Since mentioning my foot, I found out yesterday that my surgery date has been set and it's sooner than I thought it would be. They had said 27 June, 2014. However, my surgeon said I wouldn't last long. So, I go under the knife on the 6th of June. The surgeon wants me admitted on the 4th I'm on blood thinners, and they need adjusting. I can not come completely off them as I have a blood clot in my SVC (Superior Vena Cava) and if any of the clot broke off it would go directly to my heart. I think they plan on doing a heparin drip.

Every doctor and nurse has expressed the opinions to me about the surgery. I was told I have a 47% chance of my wounds not healing, and a good 58% that I will remain vent dependent. They're expecting the surgery to last anywhere from 2 to 4 hours, and I need to be on my stomach. Anesthesiologist hate to put patients on vents on their stomach. Apparently, they hate it even more so, when the patients has lung and breathing issues already. My latest PFT was worst than last years so I have to start inhalers now.

I see my Rheumy next Tuesday, the GI on Wednesday. and the Cardiologist next Thursday. Then I just need to see the internal medicine docs and I'm cleared for surgery. The internal medicine doctors will be handling all of my care from admission to discharge. The Orthopedic surgeon admitted that his residents were not prepared to handle someone as complex as I am. That only the medicine docs could handle me. So, my pain management, any complications etc will be handled by medicine doctors. The surgeon and his team will basically consult and do the surgery.

Well that's the news from here, it's now almost 2:25am and I guess I should try to sleep some, before my hubby wakes up again looking for me. I thank you all for my support and just for being there for me. Not sure who will put post in here once I do my surgery. My daughter will be home from school from 31 May until 25 June, so maybe I can get her to post for me.

I hope you all are sleeping and have a great day today. I think of you all every day you're in my prayers and positive energy thoughts are sent out to you daily.

Hugs,
Barbara