nerve block

This afternoon I have an appointment with my pain dr. He is giving me a thoracic nerve block. This is probably one of the few blocks I've never had. The area on my back that is over the bottom right portion of my lung is visibly inflammed and swollen. I'm splinting when I breathe cause it hurts. I have intersticial lung disease in that lung, so I need to take deep breaths. I got cortisone injections down my sternum 3 weeks ago and the block today. Hopefully this will help. I just feel like a pin cushion. I know many of you can relate.

I had mentioned in another post about the problems I've been having with my eyes. The dr wants to try autologous serum drops. They use my blood and separate out the serum and make eye drops with my proteins and antibodies. My blood is shipped to California and they make the drops there. Well-my insurance does not want to cover this. No big surprise there. Rep said if the medicine was life saving I'd have a better chance of winning an appeal. I told her they would be sight saving, but she wasn't very impressed. My eye dr called and wants me to come in and talk to him. He has done many things for me free of charge. I know these drops are super expensive so I wonder what is plan will be. Love him. I've been seeing him for close to 10yrs. He's laughed, prayed, and cried with me. He's a keeper.

Off to go be a pin cushion:)

Thanks:)

Home sweet Home.

Thought for a minute he was going to send me down to the ER. Pulse was 154. I told him that I felt it was due to pain. He listened and the heart sounded pretty good-no obvious rub. The steroids-50mg-are helping to keep the inflammation around it down. He took my pulse again at the end of the appointment and it was down to the 130's.

Nerve blocks weren't bad at all. He did 2 on each side. Please let them help. We talked about what treatments are being used and what Duke has to say. He gave me a hug and said he's praying for a miracle. Love him. I wish I could clone them for those of you desperately searching for a good pain dr.

Talked to the eye dr. He calling insurance for a dr to dr review. I'm hoping the reason they denied the drops is that they are fairly new and not used often. They HAVE to say yes.

Praying for the best for you. I have had injections in that area for years and they have always seemed to work better for me then the lumbar injections i get. I have had great success and I pray you will too.

Hopefully insurance will take care of the eye drops also. Good luck to you. i hope you start feeling better. janet

Keeping my fingers crossed that the injection works and you get your eye drops as well.

Very nice touch,taking something like that together and helping yourself as well. I'm sure it will be something that your son always remembers.

Vickie

Hey....

Glad you got the injections - sure hope they work for you!

Re: the eye drops.... it sounds like just the hoops you have to jump through when something is new. Hopefully it will get covered now.

Re: your son.... and I'm honestly not trying to just make you feel better, lol.... but just the fact that you obviously care so much about your son... and are doing the things you are w/ him... shows that he DID win in the mom department. Seriously. Don't let that "mommy guilt" thing eat at you.

I think that you two doing guitar lessons together is awesome. I really do. I personally would love to know how you both do. I've got a 9 year old too that wants to take guitar lessons... and I was holding off some. But I really need to start looking into it.

Anyway, just my late night ramblings, lol. Rest and let those injections work.

--Tina

My Dr. had to do a dr to dr "peer" review for me. My insurance wasn't wanting to cover the Oxycontin. Even after she provided all the documentation that it's kinda my last option.

BUT...she won the review for me and they agreed to cover it for a year. I hope the same thing happens for you. I think sometimes these reps need the "human" element in order to sway them.

The fact that your doc is willing to do this review in the first place- its kinda a pain in th ass or so I've been told- means he really believes these are what you need. That goes a long way when it comes to persuasion!

Good luck! Let us know!

Janet-you definitely didn't intrude.

I've given the same advice to others when it comes to mommy guilt. I know my "healthy" friends have the same guilt occasionally. I guess it just because-healthy or not, we want the best for our kids.

Been feeling pretty rough all day, but little guy had a great week at school and wanted a friend to spend the night. Decided to take the boys to see the new Oz movie. I can either hurt at home, or hurt in a movie theater. Doesn't take much effort to sit in a chair and drink a soda. Boys loved it. They freaked out at some parts, but of course won't admit it:) Just went downstairs and told them lights out at Midnight. Wish me luck:)

PT was concerned at the amount of swelling still around the temples. She printed out a bunch of office notes to take down to Duke next week. I really hope the dr has some tricks up his sleeve, but I think we've exhausted most everything. He is stumped as to how my immune system is still attacking the joints and organs. They Cytoxan should be knocking my immune system so my body can get a break. There aren't many meds much stronger than that. A stem cell transplant is still an option, but that is such a big step. It's so hard to know what to do. Right now I can live with the pain as long as the heart and lung issues are under control. The high dose steroids has allowed us to put the lung transplant on the back burner. But the steroids are also exhausting. When I look in the mirror I don't even recognize who looks back. TMJ replacements and the lovely Cushing's face makes me look like a stranger. It's just so bizarre.

OK-time to muzzle the boys and turn out the lights. Thanks again for the awesome support:) I'm so glad I found you guys.

I may ask you some questions about the transplant. Right now it's just overwhelming to just think about it.

It's 11 and I can't sleep. I have to drive to Duke tomorrow which is probably why I'm restless. Things just aren't going well and I know it'll be a long appointment. Dr fits me in a time for before the clinic is officially open and we usually talk for about an hour. He has me bring my IPad or laptop so I can bookmark sites and look up stuff with him. I love that he considers me a partner in my care and doesn't have the Dr/God complex. He likes that I was a biology major and can hold my own in a conversation. Some drs almost seem offended when patients try to voice an opinion.

I think I can say the nerve blocks have been a success. The chest is still tight with the lungs and breathing, but the pain along the back of the ribs is almost gone. My pain dr called me yesterday to check up on me and let out a "Whoo Hooo!", when I told him the pain was a bit less. He knows that I have a degenerative disease(s) so we take the victories when we can. I also love how easy the injections were-just in/out of the office and home within the hour. Love it when something goes my way-Don't we all? :) :)

Had an hour long lymphodema appointment today. PT tried, but was unable to move much of the fluid from around the jaw and allow it to drain. She printed out a number of notes to take to Durham. Eye dr called and said a dr to dr review is scheduled for later in the week. He is hoping insurance is denying the serum drops because they are very uncommon and they just don't have a code for them. My rheumy spends a few days each month at the Duke Eye Surgery clinic. He's gathering supporting data and codes for my eye dr to have on hand when he makes the call. If Anthem denies the drops after talking to the eye dr, my rheumy said he will try as well. Their plan is to annoy and hassle insurance and to break them. Works for me.

Had blood work this morning and electrolytes were way off. Begged my dr to let me get extra fluids during my infusions on Thursday, but nope-I lost that battle. Got fluids and potassium and the dr can check again tomorrow after my drive. I tried to keep my port accessed to avoid an extra stick either tomorrow or Thursday, but lost again. I do feel a bit better overall. Dehydration increases pain, but it's just such a struggle with the gi mess to stay hydrated.

Little guy had a great time with his friend over the weekend. After dropping his friend off at his house, we went to another good friends house. I mentioned earlier that I've joined up with a group of women learning how to knit. We try to get together for a few hours on Saturday mornings. Good friends and good conversations. I taught with many of them which worried me initially. I miss teaching so much that my soul aches. I wasn't sure how I would be able to handle the "teacher talk", but it's been good for me. Many of the moms have sons that are in Nathan's class. They spent the morning trying to catch frogs and building a fort. Love taking home a tired and dirty boy.

Nathan and I had our second guitar lesson today. I can't help but smile when I look over at him. He sticks his tongue out a bit when he is concentrating and his hair keeps falling in front of his eyes. Instructor calls him Bieber Fever:) My knuckles are super swollen and hot, but it's worth it. Knitting and the guitar is definitely working my hands more than they've been worked in a long time.

Turned into a long post. I tend to write way to much when I'm hurting and frustrated which just creates a rut. I get stuck in the ruts and lose the bigger picture. Obviously I'm going to hurt, and I've been told I'll hurt forever. I'm trying to take life hour by hour. Week by week, even day by day, is way to overwhelming for me. Too many conditions, drs, appointments, and medical complications to handle. Hour by hour-I can do it.

Guess I can fold some laundry. This actually helps my hands. I run the clothes through the dryer and fold them while they are hot. Feels so good on the joints. Now, if only I could find a therapeutic way to put them in the drawers:)

Not the best appointment, but I knew it wouldn't be.
Rheumy isn't sure where to go from here. I was due to get another Cytoxan infusion tomorrow, but he canceled it. I've reached a toxic level and he fears what another dose may do to my system. He also has yet to see any benefit from the medication. Tons of negatives-hair loss, menopause, neutropenia, to name a few-and still the disease marches on. Of course, he's pretty candid about the fact that the Cytoxan could be holding the disease at bay and things may quickly go downhill. Regardless, my bone marrow can't take it.

For now I'll go back on injectable MTX. This may or may not be beneficial. I have lung disease already and the MTX may cause it to worsen. Once again, time will tell. Dr wants to try IVIG yet again. It's one of the few strong medications that either helps, or does nothing. Not too many negative side effects.

There is just no explanation as to why we can't stop the disease process. Dr was shocked to see how inflamed my hands are even with the high dose pred and the Cytoxan. He ordered xrays of hands since they were visibly red and inflamed, and an MRI of my rt knee. He wants a better picture as to what is going on. He ordered a ton of blood work and said he'll call my the middle of next week and to email him if I don't hear from him by Thurs.

He is also researching what foods I can add or lose which may help. Obviously I'm in an odd boat with the jaw replacement and gi mess. I'm currently feeding tubeless and want to stay this way. He has many patients that swear by juicing. He has a few patients where nothing he had done had made a difference, but diet seemed to jumpstart a change. He talked of one scleroderma patient who did a complete turn around and he can't explain it. He also added that he would pray for me as well.

He was pretty blunt. He can not figure out a way to reign in this disease. With the organ involvement this is not a good situation. He is open to returning to the Cytoxan if it seems that my system can handle it. Unfortunately, I have no control over this-it all comes down to my bone marrow.

I just don't know what to do. Nathan is at my parents house since I was supposed to be down in Durham for another day. I've cried myself out. Instead of looking for a cure or remission, it's now a matter of putting out fires. If it was "just" my joints it would be bad, but doable. Pain meds, joint replacements, assistive devices...but still doable. Heart, lungs, eyes, stomach, blood vessels...they can only take so much. I'm just so @%#$! pissed! Pulmonologist wants a baseline CT to establish the level of lung disease, but surgeon wants a CT of the head/jaw. I'm going to glow in the dark. Lungs are more important so that dr wins. Rheumy called my cardio and I see her on Monday. She wants a current echo and also wants me to see an electrophysiologist regarding my heart rhythms. I see the neuro in 2 weeks. I'm also going to look up everything I can about diets and disease. Rheumy wants total involvement and will be researching as well. He emailed me already and said one of the nutritionists is going to look at my file.

I'll call my pain management dr tomorrow and give him a heads up. He likes to schedule my appointments around Duke visits and treatments. He gets a better picture of my pain levels when I'm due another infusion. Since I'll just be getting IVIG I don't know when he'll want me to come in.

I'm about all cried out at this point. I'll give myself tonight to wrap my head around everything. Tomorrow my best friend and her kids are coming to stay a few days. I can't wait. Little man will also be home. I'll get out of this rut. I normally don't allow myself to get this upset. I know you guys get it. We are all a medical mess, but at least we can support each other.