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Posted 11/27/2012 11:42 PM (GMT 0)
Hey All;

I'm sorry but I need to unload a bit. I HATE my QOL, I literally don't know how much more I can take.

I tried cutting my steroids back by 5mgs last week, and boy oh boy am I paying for it now. So today I increased them back up and will see what my Rheumy has to say on the 19th. I'm so frustrated with having severe Lupus and moderate RA. All the auto immune issues are just going down hill for me. I now have had 3 doses of the Benylsta and I've not noticed ANY GOOD results, but I have several of the BAD results.

I'm struggling with really bad insomina, I'm irratated a lot of the time. I've NEVER suffered from anxiety and now I'm dealing with that. I also am experiencing depression, I just want to crawl into a hole and just die. I will see my PCM on Monday, she upped my cymblata prior to starting the Benylsta. She also told me if I needed it she would give me Ativan for anxiety.

I am SO disappointed that I can't go ahead with the treatment for my warts. They have been on my left thumb for over 12 years now, my right thumb just recently started. I also have them growing on the back of my foot and on my belly. My L thumb is so bad it doesn't even look like a thumb anymore. I can't button my shirt, can't put in earrings, can't do anything that requires use of my thumbs. I'm just so so frustrated, I FEEL like drinking a bottle of vodka and hacking the thumbs off with my meat cleaver. I understand why they want me to wait, but it's like my black cloud NEVER goes away.

I received an email from the Dr I saw at NIH last night, the tone of the email makes me suspect that they really believe I have this genetic disorder. I already know that my MDS has moved closer to becoming full blown leukemia, IF it was caused by the drug I took to treat my lupus it's a lot harder to treat. If my MDS is caused from this genetic disorder, it will be easier to treat the MDS.

Today, I'm sitting here feeling sorry for myself and I know I shouldn't be, but I just can't help wonder what did I do in life to deserve ALL this crap. My back is soooooooo through the roof pain wise and the PM Dr is out on vacation until the 12th. My injection will be on the 13th. I know from yesterday's normal lab work I'm really anemic again and will be needing some blood soon.

I have wished for years to have research Drs look at me and figure out the odd symptoms I have. Now that I have that, I'm reeling, my hubby told me just a minute ago, "yes we wanted that, but with good results". We know IF I have the genetic disorder I will need a bone marrow transplant, but with my lupus, RA, and Fibro it's going to put me at a much higher risk. I'm afraid to ask what my odds are.

I'm sorry for complaining I know there are folks here that are so much worse off than me. I know I should be thankful that I'm still alive, but what I'm facing over the next few weeks feels like Mt Everest. I just don't know IF I can continue on. Thanks for reading this looong vent, I know you all understand the feeling of being overwhelmed and sick of being in pain 24/7.

I wish you ALL a good week and I hope you have low pain days. For those who have appointments and procedures I hope they go well, and have good results. Thanks for being there.

Hugs,
Barbara

Post Edited (Barbara Lee) : 11/27/2012 5:01:56 PM (GMT-7)

Posted 11/27/2012 11:54 PM (GMT 0)
Oh Barbara, you have so much to deal with right now. I really feel for you. You have every right to vent, after all, as bad as most of us are, I think you have every bit as much going on , if not more. You are always so cheerful and full of sympathy and encouragement for others. Maybe the time has come for us to support you. You are a very brave and courageous lady and I just want you to know how much you mean to me, you have always responded to my posts with such understanding. Medically, I can't offer anything other than to say, hang on in there. At least you have some good doctors on board now.
Keep your chin up Barbara and NEVER apologize for venting. Hope things improve for you soon. You will be in my thoughts and prayers.

Jane
Posted Yesterday 2:54 AM (GMT 0)
Barbara, I am so sorry that you are going through so much right now. And yes, I understand well the feelings of being overwhelmed and frustrated - when the pain is relentless and the bad news just keeps coming. It's hard. When I start to feel that I'm losing the will to fight another day, I take a deep breath and dig a little deeper - and somehow I find the strength. Throughout my life, I have learned that it all works out in the end and the sun WILL eventually break through. Venting is a good thing - it gets the crud out of our heads! I'm thinking of you. Have a peaceful day......
Posted Yesterday 3:14 AM (GMT 0)
I'm so sorry that you are having a tough time right now. So many people don't understand what it is like for us that have to live with all these problems 24/7 and how it takes a toll on not only our body but our minds,emotions,spirits, etc. All we can do is keep going and hope for something to change so that our lives are a little better. Pain is a horrible thing to live with and it really tears a person up. We are forced to be strong and sometimes have to dig really deep to find that inner strength but we must keep going because the world is a better place with us in it. Big healing hugs to you and I hope you get some better treatment soon.
Posted Yesterday 4:43 AM (GMT 0)
Hi Barbara, First off don't be sorry for venting, you know that were here for you, and if there is any place to vent this is the place to do it, venting your frustrations to people that really care and can empathize with you.  Also do you know that the steroids can cause some of your insomina, as a host of other things including depression. I know when I have to take them for a bout of colitis, the high dose effect on me is emotionally, I can remember working on the oncology unit and I was on 90 mg of prednisone, and I was a mess, I was taking care of dieing patients and I was literally crying along with their family and I wasn't sleeping very well.  The med is great for relieving symptoms of Ulcertive Colitis but the side affects can be terrible.  It really is a fantastic medication and is used for so many things, but it is like a double edged sword, with its side affects! So that might be part of what is going on. Also could it be the season having some affect on you, I mean I understand with everything you have going on that is more than anybody should have to go through. Then add to it the medications your on and yes even the time of year and season, and that can only make things all that much worse.

 

But know that we are listening and give you our support!

 

White Beard

Posted Today 1:28 AM (GMT 0)
Barbara I wish I knew what to say, you can most certainly vent, I have such respect and honor for you, hun. Stay strong we are with you and lending a shoulder to lean on. Many many prayers and hugz for support, if you don't mind me saying that!
Just take heart in knowing you have a wonderful family and a great daughter!
Prayers.
Posted Today 1:36 AM (GMT 0)
Barbara - my best wishes and prayers to you.

You can do it !

Josh
Posted 12/2/2012 5:06 AM (GMT 0)
Hi Jane, Splashdancer, Lynn, White Beard, Chart, and Josh:

Thank you all for your kind words and prayers. You are all so sweet, I can't begin to say how much I appreciate getting support here.

White Beard, yes I know that steroids can cause insomnia, I'm always on 25mg of the stuff. So unless I'm above like 50mg daily it normally doesn't affect me in that way. I'm guessing that my insomnia, depression, and anxiety is coming from the new drug I'm taking for my Lupus. Benylsta is known to cause all these things and more. I spoke with the assistance line at the company that makes the drug and these types of side effects affect like 80% of the people that did the trials.

I see my PCM on Monday and I think I'll ask her for something for the anxiety. It's just that I'm irritated at most things, I'm not normally quick to upset, but I am now. Last night I was in the kitchen trying to get something, and my hubby put his arms around me and STOP, STAND STILL, the benylsta is bugging you. He's seen the changes I'm going through so I think he's keeping a wide berth around me.

Today, has been a really hard day for me. My left shoulder is hurting really bad like a 8 on the pain scale. I think I might have bursitis in the joint. I hurt all the way to the base of my head and I can't lift my left arm over my head. I hope that my DR will give me a steroid injection into the joint and see if that helps any. I haven't had my regular massage lately. My therapist is afraid to do body work until I have it cleared by my DR. She worried about stirring up the benylsta and making it more potent.

Of course, I took the last of my diluadid last night. My Dr gave me 200 tabs on the 15th of October to last me 30 days. Well I normally stretch it out to last sometimes as long as 60 days. I have been needing my BT pain meds more than I did when I was on 30mg daily of methadone. Of course, with my QT interval being extended they cut my methadone back to 15mg daily, and just approved me going up to 20mg daily. Well, I just couldn't do it this time around, I have had to take close to 4 to 5 diluadid per day for BT pain and I didn't look at how many I had left until Friday at 5pm. With my DR being a military DR they DO NOT take calls at night or on the weekend. If I can't hold on till Monday afternoon, I have to go to the ER and wait lord only knows how long. I do have my methadone that I take 3 times a day, so I guess I'm gonna rub tiger balm all over my shoulder and neck. Take some 800 mg Motrin I have that's prescribed for me, even tho I'm on blood thinners and shouldn't take it and try to suck it up and bear it. My lower back pain won't be addressed until the 13th when I get my first injection in the L5-S1 area.

Sorry, see I'm venting again. I just feel so fragile, like the lightest wind will break me into a million pieces. I guess the whole thing about the potential genetic disorder and what I may have to face with it, is messing with my head. I guess I just figure why keep fighting I'm gonna die anyway, I'm ONLY going to get sicker and sicker with my conditions until I am no longer breathing. I really haven't been upset about my situation, but now I seem more anxious about it, I'm guessing its the drugs I'm taking.

I hope you all have a good night and rest of the weekend. May your pain levels be low and your weather sunny tomorrow. I'll let you know what the DR says on Monday.

Hugs,
Barbara
Posted 12/2/2012 6:58 AM (GMT 0)
Barbara I know that your in a fragile state right now, but it is ok to talk about it, we care and we are listening. Just please know that your appreciated here, and I like every one else here just want the best for you.

 

White Beard

Posted 12/3/2012 1:26 AM (GMT 0)
Thanks WB for your post. I know that the folks here understand and care. It's just hard to tell my hubby everything I'm feeling, and telling my daughter to much just makes it harder for her. She's fixated on me dying and I have difficulty in assuring her that I'm not gonna die tomorrow.

I have spent the most of today in bed with a heating pad on my shoulder today. I'm also taking 800mg of Motrin for pain as well as my methadone. My shoulder does feel a bit better than this morning, I couldn't even move my arm, when I got up.

Well I'm off to bed again. I have a nuclear stress test at 8 am. Need to get there early as I'm hard to get an IV on. They can't use my port because the radioactive dye gets caught up in my line and the images of my heart won't be clear. After that I see my PCM for refills on pain meds and hopefully a shot of steroids in my shoulder joint. I see her at 1pm, so it will be a long day for me. I won't drive back home in between tests as it takes anywhere from 40 minutes to 2 hours to get there, depends on traffic.

Hope everyone has had a good day and low pain levels. Wishing you all a good week.

Hugs,
Barbara
Posted 12/3/2012 1:40 AM (GMT 0)
Hi Barbara, I'm sorry you've been having such a hard time, it hit me in the gut to read your other post, I wish so badly that things would turn around for you. I hope things go good tomorrow, and that your test isn't too bad. Also, I think it might be a good idea to get your BT meds every 30 days from now on, so you have them when you need them, I know it's your only lifeline from the decrease in the methadone, and I hate to hear that someone is suffering so badly. Take care, and keep venting your frustrations, and pain away here, it sure helps me a lot to get things off my chest, hopefully it hhelps you too. Don't give up, we're here when you need someone to lean on.
Posted 12/3/2012 5:55 AM (GMT 0)
Barbara I hope with every thing you have going on tomorrow that you still manage to have a good day, or at least as good of a day as you can. Do take it as easy as you can! Good Luck with those test!

White Beard
Posted 12/4/2012 12:47 AM (GMT 0)
Thanks Matt and WB for the well wishes. Today has been a very LONG one. I arrived at the clinic that does the nuclear stress test. It took them four tries at getting an IV. They injected the radioactive dye into my body and I had to sit and wait 1 1/2 hours before my first films were taken.

Then they took me to the stress room and began the IV medication to make my heart rate rise to the level needed for my age. Well at first my heart rate didn't even rise a bit. As they gave me more and more medication, I ended up vomiting and then started having severe chest pain, like an elephant was sitting on my chest. Everyone started getting anxious they thought I was gonna code on them, so the test was stopped. Of course, now I have radioactive dye in me that I have to carry a special card for 4 days.

My cardiologist was paged and he decided that I will have to go through a left sided heart catherization. Of course, with me being on blood thinners it complicates everything. I'm guessing I'll have to be admitted two days prior to the cath, I will need a heparin drip for two days.

My PCM filled my scripts, but felt uncomfortable giving a steroid shot in my shoulder. She was going to email my Rheumy to see if he can do it before my appt with him on the 19th.

I'm gonna have a small snack, have a hot shower and go to bed. Have another appt tomorrow as well as pulmonary rehab.

Hugs,
Barbara
Posted 12/5/2012 11:25 AM (GMT 0)
Hi Barb

Just wanted to stop in and wish you all the best. You certainly have alot on your plate and as others have said, there's no reason to feel bad about venting. I don't think anyone would want it any other way. That's how we get to share the love and support we have for each other. I will continue to  keep you in my prayers and I know God will continue to give you strength and hope.

I consider it an honor to be your friend and offer what ever support I can and I'm sure others feel the same so please vent away and let us give you the love and support you have given others. Take care Barb. Your Friend Randy (Stingray)

Posted 12/5/2012 4:44 PM (GMT 0)
Barbara,
I was thinking about you this morning because I am having a horrible day and I had to stop and say to myself that I have no idea what a horrible day is until I walk in your shoes. How are you doing today? I hope you are okay. You really give me the strength and motivation to keep on going even though I just want to curl up in bed and cry like a baby. I guess all we can do is try to stay strong and take it day by day.

Hugs,
Lynn
Posted 12/6/2012 10:17 PM (GMT 0)
I'm so sorry you are suffering so badly Barbara. You do have way too much on your plate and I wish there was some light at the end of the tunnel for you. One hour, one minute at a time. Praying for your strength to continue this fight.

Suzane

Posted 12/7/2012 1:50 AM (GMT 0)
Randy thanks for your reply, I know that you are always there for me. I just am struggling with this new drug, but my PCM has given me something to help me when I feel as if things are spiraling out of control. I haven't heard from my Rheumy about getting a steroid shot into my shoulder yet. I hope that you are doing ok and know I appreciate your friendship.

Lynn, I'm sorry that you weren't feeling well yesterday (((hugs))). I know you said you were having a horrible day, I pray that today was better for you. I can't say that my issues are any worse than anyone else's I think that we all struggle day to day and if anyone who was well, had to spend a day in our shoes, might be able to handle it.

As to inspiring you, I don't know about that, I seem to vent more right now than anyone else on here. I know the Benylsta is making me feel out of control, and waiting for the results on the genetic disorder is nerve racking. As to how I'm feeling I'm hanging on tight, I noticed yesterday at about 2:15pm that I had blood coming from my left ear. I rushed up to the ENT at the military clinic at the base that is near us. Thankfully, he agreed to see me w/o an appt. Guess I have an ear infection. He suctioned out some wet and dried blood. He said my PE tube was still in place. He figures that I have blood behind the ear drum and inside it, he couldn't see it. He gave me some antibiotics and will see me in two weeks. If I'm still dripping blood on Monday I'm to call him.

Hi Suzane thanks for the reminder that sometimes it one minute at a time. Glad to see you back on the fourm. Hope you are doing well. Thanks for your support.

Hugs,
Barbara
Posted 12/7/2012 7:07 AM (GMT 0)
Hi Barbara, I am glad you got in right away to see the doctor, that would be a little disconcerting have blood running out of your ear! I do hope you are alright and the antibiotic does the trick!

Take care

White Beard

Posted 12/9/2012 3:08 AM (GMT 0)
Hey WB, I too hope the antibiotics work. He mentioned that he may need to remove the tubes I currently have and put new ones in. I can say I now know why they put the little ones under, I wish I could be put under LOL.

They just do the tubes in their procedure room, yes they numb the ear drums, but you hear everything, it takes a lot will power not to jerk or move

I still haven't heard from my Rheumy about getting a steroid shot in my shoulder. I had to cancel my steroid injection for my back that was supposed to happen this Thuesday. It's looking like I'll be going into the hospital that day. My cardiologist is wanting to get tis stress test done, and he needs to put in a central line for either way he goes for the test. I know he's trying to be safe with me but I'm just, "lets get this done". I have to have my infusion on Friday, and the gyn/onc wants to do a biopsy while I'm in the hospital too.

Hope you are having a good weekend!

Hugs,
Barbara
Posted 12/9/2012 3:15 AM (GMT 0)
Barb,i'm so sorry you have so much to deal with. Thank you for posting for me. You know your in my prayers ...love you my friend. Call me anytime you want God bless you dear friend.


Kay
Posted 12/9/2012 3:56 AM (GMT 0)
Barb

 

 

It is fine to vent.  It keeps us sane for the moment. So sorry to read that you have so much on your plate.

 

You have given all us love and support.  We will pray for you.  Please keep us updated.

Betsey

Posted 12/9/2012 5:57 AM (GMT 0)
((hugs))
Posted 12/9/2012 3:44 PM (GMT 0)
Barbara,
Still saying my prayers for you hun, sure hope the hospital testing and all goes good for you, try and keep us posted on that..thinking of you and hope you can enjoy the holiday season.
gentle ((((hugz)))) and prayers...
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