Rocckyd

Thanks so much for checking up on me:)

I wrote a rather long FB post on a RA board I belong to, so I'll cut and paste most of what I said. I didn't mention anything about pain meds in the post. Saw my dr and his pa both in and out of the hospital. Right now I'm on 25 of Fentanyl every 48hrs and 15mg of Oxycodone every 6hrs. At night I take Amitryptiline, Valium, and Baclofen to help with the jaw spasms. I'll have been home for 2 weeks tomorrow. Finished the solumedrol and the antibiotic thru the nebulizer and home health just de-accessed my port. YAY-no tubes hanging out.

Called my Gi last week to let him know about the couple of weeks inpatient. I didn't realize how serious the pseudomonas pneumonia was until the followup appointments. Lung dr feels the infection was directly related to aspiration. I've had awful reflux this past year. If I bend down I taste vomit(ick) immediately in my mouth. Sometimes I do actually get sick, but it's a small amount. I've also woken up coughing with the taste in my mouth and a few times I end up getting sick right off the edge of the bed. I have a never ending supply of breath mints. Unfortunately with the TMJ replacements I can't chew gum to get rid of the nastiness. Anyway, hospital crew wanted input from Gi.

He ordered an upper barium series which I had last week. Ick yet again:( Dr said to allow a few hrs for the test since they are trying to take a "snapshot" of the reflux occuring. Well-after 30min he was done. I told him to give me a high five since it was so quick, but dr said I had one of the worst cases he'd seen. Hmmmmmm. Gi dr called me yesterday and told me the dr doing the test called him personally. He wanted to stress how bad the relfux was, but that the barium also showed a number of irregularities throughout the stomach as well. Of course, barium shows nothing in detail, so Gi said he'll address that later. Right now it's the reflux. He and the pulmonologist both feel there is just a matter of time before I aspirate again and end up back inpatient.
I just don't know what to do. A Fundoplication is not a huge surgery compared to others that many of us have had, I know that-I'm just mentally and physically exhausted. I've just been told for months that I'm not healthy enough for non-emergency surgeries. I know most of you remember the crazy stomach acid leaking stoma that I had for 7 weeks before the surgeon felt I was healthy enough for him to go in. Plus, if I could choose the surgery, I'd rather have the rt knee replaced. It has to be done and the ortho has been working with my rheumy to get me to a place where I'm strong enough for it to be done. Tues I have to have another Gastric Emptying Study(GES) done. Last one was 2yrs ago and things have progressed since then. In the morning I'll eat scrambled eggs(which I HATE anyway) that have a radioactive tracer in them. Then the dr times how long it takes for 90% to move through my stomach. For most people this will take less than 2hrs. Last time I had this done, 80% was LEFT in my stomach after 4hrs. Not good. Thurs I see the surgeon and I'll have my list of questions. He's already done 4 surgeries on me so I know and trust him. I don't have to explain all the medical background and he's very very cautious. Like I said, the risk of aspiration must be pretty high since things are moving so fast. Here's a link that explains the fun:)

http://www.webmd.com/heartburn-gerd/fundoplication-surgery-for-gastroesophageal-reflux-disease-gerd

Medically-things are awful. Still worn out from the infection and hospital stays. I know things are out of whack since I've been running a constant low 100ish degree fever. I know that's pretty low-school nurse doesn't even call until it's 100.5, but it does wear me out. Cardio appointment went alright. Resting pulse was 134, but it was regular-just like the other times. She still feels that my body is reacting appropriately to pain and inflammation. I asked her when does the heart muscle just wear out and get tired? She said 10yrs of this would be a problem, but for now it's ok-it's only been 3yrs:) Lopressor was increased yet again cause the blood pressure was also high. BP is probably due to the 25-30lbs I gained while inpatient and on the 80 of IV solumedrol. I'm now down to 50 of pred so hopefully the weight will drop off.

I'm living at the eye dr right now as well. I had AWFUL eye pain in my rt eye this weekend. We are all used to pain, but this was so above and beyond. Apparently the cornea in my right eye is shredded. Dr found a poster on the wall to show me how nasty it looked. Yep-nasty. He's worried that the pseudomonas could affect the eye with the amount of damage. According to him, if the infection gets to the eye, sight can be lost in 48hrs. YIKES! I have a ton of drops and antibiotic ointment. I'm there every other day, but I'm hoping things will turn around soon. And, of course, all the joints are inflammed and swollen. I was supposed to drive 3hrs to MCV to see the jaw surgeon for a followup, but I texted him and asked if it was really necessary. Nothing has really changed. opening last measured at 13mm. Wow-get excited.

If you've had a Fundoplication done(guessing nobody has but doesn't hurt to ask), how was it? I want to hear both good and bad. Nothing ever works out easy for me(I know many of you can relate), so I want to be prepared. I guess the possibility of aspirating in my sleep is a pretty serious issue for multiple drs to be pushing this surgery, I'm just so incredibly tired. There is not an organ system in my body not involved. I just can't do this, I can't. Then I look at my little guy and I know he needs a happy and healthy mom. I just wish that it was easier to get that way. Not just for myself, but for all of us. We so deserve it.

Thank you so much for taking the time to update us. All I can say is how sorry I am that things are so awful for you. You just never get a break. I can totally understand your reluctance to the surgery but if it's necessary to prevent the pneumonia then it has to be worth thinking about. A huge decision and one I don't envy you having to make. Your eye issues sound scary, just one more thing for you to have to deal with. Eyes problems scare me, the thought of blindness doesn't bear thinking about. I am so glad you have good doctors who look after you well and who you obviously trust. That does make decisions a bit easier as I am sure they wouldn't want to operate unless it was an absolute necessity.

I hope you are able to enjoy some summer fun time with your little boy. Is he about to have school holidays? Make sure you get plenty of rest and do everything you can to keep well, easier said than done I know. take good care Roccyd, so pleased to hear how you were doing.

Love and hugs

Jane

Hey Rocckyd:

First off, gentle ((((((hugs)))))) to you. I'm so sorry that you are feeling so bad. Don't you just hate it when you get this sick and there seems to be no end at the tunnel? Well sweetie there is one there, you have to hang on and fight. You have all of us here pulling for you, prayers can be answered.

I know AuntKay had the surgery that you are thinking about having. I'll call her this morning and ask her to give you the update on her surgery. In my opinion hers was a success, I rarely, if at all, hear her complain about acid reflux. She was so bad that if she just drank water it caused severe acid reflux.

I suffer from acid reflux and Gastroparsis just like you do. I'm on Aciphex for the reflux and zofran for my Gastroparsis. For almost 3 years I was taking reglan for it, but it can cause an extended QT interval, which I'm having issues with so I no longer take reglan.

My GI and surgeon helped me find a Dr who put in gastric pacemakers for Gastroparsis. I almost had one put in, but changed my mind after meeting with some of his patients.

I really hope that you begin to start feeling better really soon. I know how you feel regarding your little guy. I went thru all those same emotions with my daughter. Still am, I'd do anything for her, but I can't protect her from watching me get sicker and sicker till I die. Been considering running away from home so to speak to avoid her having to watch what's to come.

Trust me your little guy is happy to have you home with him and that's good enough for him, so try not to focus really hard on what you're not providing for him. You are giving him ALL that he needs, YOUR LOVE.

I'll be praying for you and if there is anything at all I can do for you, please just ask. Know, that I care, just like everyone else does here and you will ALWAYS have us to support you.

Hugs,
Barbara

Oh honey, no wonder you feel overwhelmed, anyone would dealing with what you do on a daily basis. I honestly think you are coping as well as you possibly can, when everything around you seems to be falling apart. But your doctors aren't giving up on you and neither should you, I mean that honey, you do a wonderful job at keeping upbeat. You are allowed to feel tired and fed up, and at this moment I think anyone facing what you are just couldn't be upbeat. You have been facing some crazy stuff these past few months.

I think Barbara's right, your little one will just be happy to have his mom back home. You know little ones are very resilient when it comes to illness. I spent a lot of time ill, not in any way like what you te facing, but I had many gynae problems and miscarriages which would see me disappearing in the middle of the night, and granny being there when she woke. Then I had more than fifteen knee ops by the time she was sixteen. And you know she barely remembers any of the bad times. She ended up being a nurse, and a very good one at that. I thought she would loathe hospitals, just goes to show!

I know this is a scary op for you but it sounds like you are doing the right thing by having it. Maybe AuntKay will be able to give you some first hand help with what to expect. I googled it, but I know for you it's even harder with all your added issues. But I think the outcome will be worth it and you'll have more strength to deal with everything else. Have you thought of speaking to maybe a counsellor, talking can be therapeutic especially when you are feeling so overwhelmed and scared. I know how hard it is to do anything just now, but you will always get support here too. I for one would be happy, honoured even, to speak to you be email. Unfortunately Scotland is a bit too far away for phone calls!!

Sound Ike the results of your yucky egg test aren't going to be great, but I guess you knew that. It will just confirm the need for this op. let us know how your appointment goes. Just remember what a great mom you are and how much your little guy loves you. You know we are praying for you to get through this and then hopefully get some respite from all your other issues.

Take care Roccyd

Lots of gentle (((hugs)))

Jane

Post Edited (Fusiongirl) : 6/11/2013 6:54:07 PM (GMT-6)

Thank you yet again. Having a few people who "get it" makes a world of difference.

I have an awesome support group of family and friends, but they don't understand the middle of the night frustration, pain, and fear of the unknown. I really truly hope they never do.

My son does make it worth it. He is such a good kid-even with the 9yr old attitude. I taught biology for yrs, so I know the fun to come in these upcoming years.

I just don't want another surgery. I have so many other areas that need surgery but I've been told I'm not healthy enough. Now, here is a problem that drs feel must be fixed sooner rather than later.

OK-Off to take little guy to swim team practice. He has a birthday party to go to this evening so he's pretty excited to have a fun day. He does keep me going.

Barb-you and I seem to have a lot in common. Lucky Us:) I'll definitely email you later on today.

Thanks again to all of you for such awesome support.

Roccyd

I too just wanted to say that I'm thinking of you. Hope you are feeling a little stronger, physically and mentally.

Hope you have a good weekend with your little one.

(((hugs)))

Jane

Hello again.

Saw the surgeon last week. He agrees that the surgery is a necessity, but that I'm not healthy enough at this time. UGH-I'm so tired of hearing that statement. I totally trust this dr. He has done a number of surgeries on me. He was pretty blunt, which was needed. He's afraid that he lose me on the table or that he would lose me in recovery. I don't heal well and he afraid of the stitches being blown and then I'd have internal bleeding. He also said that if I don't have the surgery, it's only a matter of when I would develop the pseudomonas pneumonia, and that could be a critical situation as well.

I have an upper endoscopy scheduled on Friday. Surgeon wants to see what the barium study identified as "places of concern" throughout the stomach. Then, he, the gi, and the pulmonologist will put their heads together to come up with a solution.

Rheumy is still trying to get meds approved. He is really pushing for Acthar, but it's $28,000 a vial. Obviously insurance is not jumping at the chance to use that med.

To further complicate matters, I now have shingles. Excellent. They are around my eye, but not in it. Obviously they don't feel good and I have to see the eye dr. every other day. I've also developed edema in both legs and ankles. I'm taking lasix to help, but it's not really making a difference.

I've also developed extreme fatigue. Not just tired, but bone aching fatigue. I'm afraid to drive anywhere longer than 20min. I totally ruined my laptop last week cause I fell asleep while holding a cup of water while using the laptop. Completely fell asleep and woke up 2rhs later with a wet computer. Obviously not regular fatigue, it's pretty extreme. My primary dr ran blood work and it all came back ok. She was surprised because I'm bruising easily as well. Last night I slept at some point with my lower legs crossed. I woke up with a bruise on each leg. Bizarre.

I wish I had more positive medical news to share. Please keep your fingers crossed that the EGD on Friday shows nothing and has not complications. Last year I ended up inpatient 2 weeks due to the jaw muscles locking down. The TMJ replacements don't all my jaw to open very wide. My gi knows this and has a pediatric bite block to use.

On a positive note, my little man qualified for the first time in the 50 breast stroke and 100 IM. I'm so proud of him. He's been working really hard. I have him at home for a few more weeks and then he's off for 1 1/2 weeks at a summer camp. He's counting down the days :)

Ugh ugh ugh. Life just plain sucks sometimes.

I'm so glad your surgeon isn't one of those full of himself hot shots who will do a surgery no matter what. It's really refreshing to see his honesty and his concern for your well being. At least you can rest easy knowing that when he does decide you're ready for it...you know you'll be ready.

I wish there was something I could say or do to make things better for you...seeing everything you have to endure on a daily basis breaks my heart and inspires me at the same time. There are some people here who just affect me like that.

Is there any way to save the laptop? I spilled water on one of my mine once...and I was able to take it apart and dry all the components out and it continued to work once it was dry. Was it turned on and active when the spill happened or was it in sleep mode? Mine was in sleep mode I think...

Also, I know there are medications and vitamins/supplements out there that help with fatigue, would it be possible for you to take something like that? Being that tired can actually be worse than being drunk in some cases.

You must be so proud of the little guy! I'll bet he loves camp...I hated it...but then I was forced to go AND I was the only one there who couldn't participate in the majority of the activities because it was all physical...

I'll keep you in my thoughts and prayers...please keep us updated...I hope you're having a low pain day :)

Rocckyd (& others)

So very sorry for your ongoing & new issues.. I don't even know what to say that others have not already posted..

Our children love us - no matter what.. & just want our love in return. Gets more complicated as they get older..

Mine loved camp & still smile when they talk about going.. nowadays I read about camps of all Types of themes which is great, specially for those inbetween years when kids are too old for 'babysitters' & too young to be all on their own.. hope your son enjoys going!!

My brain is tired - I hope it will let me go to sleep soon.. so this post may wander. ; D.
Read your post, & those others too, who also live day to day in pain - I feel the distress & just had to send hugs & prayers.

Blessings

Hey Rocckyd,

Sweetie I'm sorry you've had so much going on, and I've not been here to offer some support and help. I've been really sick for about just over a week now.

First off I'm sorry about the feeding tube, they are NO FUN, and I don't blame you one bit at not wanting one. I wouldn't want to do surgery either, especially on 50mg of prednisone a day. It really isn't anything to look forward to when your Dr tells you will HAVE more pain. So I'd be venting BIG TIME, you're being to quiet about it.

Okay, first let's think positive, yes having surgery on high dose steroids isn't the best of choices. However, I can say, I had my colon removed on 45mgs of prednisone and on cytoxan. Did I have a few issues, yes, but overall did well. I was home from the hospital 10 days after surgery. That was after a night in the ICU with BP and bleeding issues.

So we will pray that all goes well, and that your surgeon is smart on his feet and can handle any and all problems. We will view the feeding tube as a necessary evil so that you can have your surgery and heal get better quickly.

As for the shingles, I can't offer a lot but many prayers your way. As for your cornea, I have a condition called chronic erosion syndrome of the cornea. My eye Dr did a procedure where he scraped all of the cornea off till it was smooth. He put a contact into my eye and it was left in until i saw him a week later. Once it healed I was started on restasis eye drops twice a day, refresh plus eye drops up to 10 times avday, and I use an antibiotic ointment in both eyes at bedtime. So far I've done really well since the procedure. Maybe you have something similar and you could ask your eye Dr about it. Wouldbe happy to send to any information on the condition or my specialists name and email for your Dr to contact him. My specialists teaches at the military medical school in Bethesda, MD as well as practices at the military hospital.

As you know I've been on steroids over 12 years now and I know all about moonface. I hate mine too, I won't allow anyone to take photos of me cause of it. I'm trying very hard to get past this, as I've been told by my oncologist I'm terminal and I know my family will want photos of me to look back on. So let's make a pack we will take a photo once a week and list ONLY AND ALL the beautiful things that OTHERS SEE when they look at us. It's not fair to put OUR feelings into what others would say.

As for the ugly purple marks, well let's just consider them hard earned beauty marks okay LOL. For me I figure the marks go with all the lovely rashes, bruises, and huge veins that are sticking out all over the place. You are so correct that LIFE ISN'T FAIR AND WE HAVE NO CONTROL, sorry I needed to yell that. There really isn't much we can do but go along for the ride. Rocckyd I'm sorry you are having such hard times health wise (((hugs))).

Please know that we are all here for you. You have a wonderful son who LOVES YOU, moonface and all. I know your family LOVES YOU and supports you. It may seem like you're in a very dark hole right now, but the sun WILL shine through again soon, and things will begin to look up.

Keeping you in my thoughts and prayers. Take care and I'm thinking of you always.

Hugs,
Barbara