Really struggling

Warning: This is long and whiney. Sorry to sound so negative right at the start, but I'm really struggling right now.

Had a long day down at Duke last Friday. I'm incredibly lucky to have a great medical team, but it seemed that they all had bad news. It's never good when appointments start with hugs and end the same way.

First-I'm having an awful time with my eyes. I had a number of tests and scans done and they showed quite a bit of damage from having repeated infections and inflammation. 2 days ago I opened them in the morning and it felt like an icepick was piercing them. A friend drove me to my ophthalmologist and I have a severe case of iritis in each eye. This is a disease that occurs with autoimmune disorders and it basically means I have inflammation of the corneas and white blood cells where they shouldn't be in my eyes. Yesterday I spend the day in the dark, and today there is little improvement. My computer screen is on dim, and I won't be using it much longer. I've been typing this little by little-and it's still and novel.

CT and PFTs show a decrease in lung capacity and more scarring. Also showed atelectasis in both lower lobes.

Echo showed a small amount of fluid around the heart which needs to be rechecked. This is most likely caused due to the decrease of steroids.

GI is concerned about rapid weight loss after stopping the TPN. Decreasing the steroids has caused increased nausea. I can't throw up because I had a Nissin surgery which uses muscle to decrease the opening of where your stomach and throat connect. Basically means stuff can only go down and not back up. I was aspirating and refluxing in my sleep which made this surgery necessary, but it makes me miserable when nauseous. My body still thinks I can get sick so I end up retching. This forces my jaw to try and open greater than the replacements allow. No fun in any way. I follow up with my local gi next week.

Endocrine: I had been diagnosed as most likely having Antiphospholipid antibody syndrome, and the last round of blood work confirmed this. Basically my body fights my own blood which thickens it creating clots (I've had PEs in the past). To be formally diagnosed you have to have repeated positive tests in a row, well I've had 3.

Neuro: I am to follow up with my local one to have a 24hr EEG due to "seizure-like" symptoms. My friends are also concerned because we'll be having a conversation and occasionally I'll go off on some odd tangent. This really scares me. My body is and will fail me, but not my mind.

And, of course, the joints. Can't make a fist and very weak grip. Lots of inflammation where my ribs meet the sternum. I'll get cortisone shots down the sternum next week. Shoulders are red and hot. My right one has needed replacing for a while, but I've been able to baby it. U/S showed quite a bit of fluid/inflammation so I'll have an MRI soon. RT knee also needs replacing and it's 2x the size of the left. I'm to follow up with my local ortho next week to discuss options. I did get fluid removed so that provided some relief. I'm also experiencing an increase of jaw pain. The thought is that I have heterotrophic bone growth along the tendons like before. The bone must be removed if this is the case. Hopefully it is not due to the titanium joints. The thought is that the joints should last 10yrs. I'm only 1/2 way there so a replacement issue would not be good.

I'm very quickly running out of conventional medical options. I have two meds to try. Both will drop my blood counts very quickly. I'll need weekly blood draws to monitor my immune system. If counts are to low I'll have to stay home. Both meds also cause nasty side effects. I know it sounds like such a minor complaint compared to what many deal with, but I finally have full, thick hair. I look closer to "normal" than I ever have before. I hate these meds and what they do, but I also have to try and love them as well. Drs are also considering a daily injection med. They are waiting to see my response to the other changes, first.

Guys, I'm really scared and frustrated. I do every single thing I'm asked to do. I've been in PT since 2010, now that my port is no longer accessed, I've been swimming. I'm trying to hard to eat and avoid going back on TPN. My diet is Ensure, apples, and peanut butter. Don't know why it works, but it does.

I try so incredibly hard to stay positive. I'm blessed in so many ways: great support from family and friends, a wonderful medical team that calls, emails, and texts regularly so I never feel just like a number, but a patient that they care about, and the only fear I have going to an ER is being admitted. I just want a quick and easy fix. I'm so tired of waking up each morning and not knowing what is going to hurt, what part of my body is going to betray me, and if I'll be able to come home from an appointment. I have a packed bag in the car with clothes and extra chargers just in case my day doesn't go as planned. I hate the look in Nathan's eyes when he knows I have a big appointment that day and the extra long and hard hug we have before he gets on the bus.

Thanks for letting me get this out of my system. I don't know what I would do if I didn't have a place to just let it all out. I so appreciate each and every one of you guys, but I hate we have a need to belong to a pain forum. Now I'm going to put compresses on my eyes and keep them shut. Nathan has an away game on Sun about 3hrs away and I don't want to miss it due to a sunny day and inflamed eyes.

Yes, what White Beard said.....you have certainly touched me. I always jump to your threads to check on you and Nathan. You are an inspiration. Please feel free to use this forum to say whatever needs to be said, apologies not necessary. We are here for you! We care! Prayers lifted up for you now.

Rocckyd:

Sweetie I just wanted to say I'm sorry that you're having to go thru all of this and you're just to darn young to have to. ((((((((((((gentle hugs))))))))))))). I'd be scared too and I know I'd be worrying like crazy about my kid if I were in your shoes. I like White Beard said a prayer for you as I was reading your post.

I know how hard the fight is I truly do. You and I have a lot of the same issues and I get it. As do all the folks here do. I just wanted you to know that I'm thinking about you and praying for you. It's all that I can offer at this time. I like you am having a very difficult time and just got out of the hospital after spending 5 days in ICU and 5 more on the the ward.

It certainly feels like we're never going to get a break, doesn't it? I don't know if you ever wonder this, but I sit and think, "what on earth did I do so bad, to be dumped on like this day in and day out". Why am I not loved enough to stop and the pain and suffering. I don't have the answers to those ?'s. My email is listed on my profile Rocckyd and I truly mean this, if you'd like to email and vent and yell, I'm happy to listen. If you want my phone number so you can call and scream away I'm all for it,. I know you're sounding very close to the straw that broken the camels back is close by. Sweetie it's okay to let it break, you've got great people around you and they'll help in whatever way they can.

I truly, truly mean this Rocckyd, I'm here anytime if you need to vent, I had a bunch of stuff dumped on me this past visit, mind you having viral pneumonia isn't enough. I'm just sitting around waiting I've got a fractured hip/pelvis and I'm not going anywhere but between my bed and the chair. So, if you need someone to listen in person and you don't want to upset someone close to you. Please consider emailing me and asking for my phone number. You can vent away and say whatever you want, I know the feeling that God is there ever going to end.

You hang strong sweetie and you'll be in my prays. I'm here if you need me okay.

Hugs,
Barbara

Hugs Rocckyd. I am so sorry you are experiencing such horrible pain and uncertainty with your health. Many prayers and healing.

The fluid around your heart is called Pericarditis. I have had this for 10 years it is scary. There are non steroidal anti-inflammatory medications you can take to help rectify this. It is an idiopathic condition, which means that the doctors don't know what causes it, per-say. They know from history what you can have when it shows up, but they don't know how to fix it. I have been taking Diclofenac sod EC 75 mg tabs for the last ten years with only minor side affects which are related to my Platelet disorder.

I have the opposite issue with my blood than you do. My blood doesn't clot at all. The Diclofenac causes my blood to thin which is the worst of the situation for me. My disorder doesn't have a name because when they found it there were only 20 known cases in the US. There are not much more now, so it doesn't warrant the funding for testing.

Antiphospholipid causes your blood to clot. I am not sure, due to your tummy, if you would be able to take larger doses of Omega 3. Omega 3 lowers triglyceride levels, helps with Rheumatoid arthritis, depression, and Asthma. I personally must stay far away from this as it is dangerous.

I only suggest this because you don't want to use steroids and my father in law uses this in to assist in his blood clotting issues. He takes Coumadin.

I have Sjogern's syndrome which is chronic inflammatory condition can lead to dryness of the eye due to an autoimmune attack on the tear-producing glands. I do not know what you have been diagnosed with. I have eye drops that I use three times a day and one for bedtime. This is very helpful (if I can remember to put them in lol). It was very scary to hear what this was and what it entailed when first advised of it. There are a few different things that you can do to help hold off the damage.

I am sorry I don't know more about the rest of your issues to comment. I wanted to take some time to offer some positive feedback and ideas after you have received such negative news all at one time. I know that it seems overwhelming and depressing. Keep trudging along! My mother has the late stages of Parkinson's with many other complications due to it after 15 years and she has had cancer in her thyroid, breast and lower right lobe of the lung (which was removed non smokers cancer). Believe you me, she is still here to harass the living heck out of me lol. She is my inspiration to keep moving forward and knowing that things can be worse and we can fight. You can fight all of this and come out on top, I have faith in you!

It is hard, we get depressed and scared. It is overwhelming! Getting it off your chest is always good and I am glad you were able to do that here.

I hope that these issues are resolved fast! Take one thing at a time, put dukes up and punch each issues right in the face!

Blessings, prayers and healing xxxx

Hi Rocckyd........................ Bless your heart! You are going through so much and happening so fast, I was touched reading your post in all that was given to you. That is sure a lot of absorb and to not feel overwhelmed, frustrated, sad and depressed.

I understand the "why me, what did I do to deserve this" because I too had asked that very question. I am sure if you asked all the members, they at one time or more have asked that very same question too!

Please be strong and know that you have a host of fellow members here who will be praying for you and will be there to support you whenever you need it.

Hoping there are brighter days for you and as they say, "This too shall pass".

Sending healing thoughts and prayers your way,

Pam

I'm Praying for you Sweetie. I'm so very sorry you're going through this. I admire you very much. You are remarkable !

Post Edited (Mercy&Grace) : 3/20/2015 5:44:39 PM (GMT-6)

Awww Mel.................. You are a special person! In the very short time that you have been here, you have certainly touched so many lives including my own. I have read all your posts and you give all, take little, and inspire us all to reach for the light that sometimes is very very high! You are loved here as well, know that!

I hope God blesses you each and every day, that you grow stronger and have as many pain free days as possible. Your heart felt words and gifts of giving are not without being heard.

Warm Hugs from Texas,

Pam

Hello Rocckyd

With the Pericarditis, I have cardiac tamponade this is similar to the feeling of a heart attack. They put me on the non steroidal Diclofenac 75 mg tab. This helps but doesn't actually clear up the problem. I have issues with physical exertion and heavy lifting. This medication has been helpful and I am happy there are no steroids! They have more issues than the situation itself. I am of course not a doctor.... but I wouldn't want to wait and see with this....... I have a load of history and you dont want pericardia infusion. I am not trying to scare you or make you worry more xxx I would ask the doc about the non steroidal anti-inflammatory.

For the Sjrogen Syndrome I eat more fruits and vegetables. You can teat Omega 3 (I cant lol) because it has anti inflammatory factors. No grains, no wheat, no corn. I eat fruit, vegetable, dairy and protein. Drink water till I float..... yuck lol I have to admit I do love popcorn lol bad me. Grain free is really the key Gluten free really doesn't work as well. There are also hidden grains in condiments (salad dressing, ketchup, soy sauce etc) and other processed food. Lunch meat is a clear example of what you should not eat because it is bound together with grains. The list is a mile long.... This is a life style for sure and not an easy one to get use to. Become a label reader. This combined with eye drops has helped quit a bit.

This also helps anyone with an inflammatory issue.

Sweetheart you are in a ball of a mess. But, have FAITH! Go head on with one thing at a time and it will be less overwhelming. This is easy for me to say because I am not in your skin. ((((hugs))))

Many Blessings, Healing and love to you xxxx

*sending hugs*
Hoping those soccer games proved to be victories!

Pam let me know how this works for you. Thank you for the compliment xxx

Inflammation is difficult to deal with on all levels and causes more problems than it is worth lol Just stick a pin in me and let the air out...

rocckyd, glad to hear you got into the pool! Sounds like that's a place of solace for you. Somehow I had missed that you have Cushing's Syndrome. My daughter is undergoing testing, ct scan and mri are later this week. You are in our prayers.

GI was not pleased-no surprise there.

I have a 20 lb window, but if I lose more than that, there will be some sort of intervention. He's hoping the weight loss will reach a plateau. He's considering prescribing IV fluids at home a few days a week, but I really want to try to make it on my own. The infection risk of having my port constantly accessed it a real fear. I'm prone to fungal sepsis, and that's a scary battle to fight.

The real problem is that the gi issue isn't a true gi issue. It's all due to the autoimmune processes. So, yet again, anything done is just a bandaid. At any point if I feel things are out of control(which really means when I finally give in), he told me to go to the ER for admission for symptom management/support and the nutrition situation will be addressed. Dr really thinks the issue is totally out of my control and the end result will be the same no matter what. If he could do what he wanted, without other Drs being involved, he would like to increase the steroids since that is when my gi issues are controlled, but he agrees that it would not be a long term solution. There are just way to many factors involved and to much unknown.

So it's time for delicious prescription Ensure and Magic Shakes and periodic Urgent Care visits for fluids. Hope that the new meds from Duke kick in and decrease the gi inflammation so nutrients can be absorbed. I do have permanent nerve damage in my colon and removing the worst area has been brought up, but I still have difficulty healing, due to immunosuppresents, to help with inflammation, which makes it hard to heal…Just a crazy med merry-go-round. Get me off the crazy ride.

Good grief. What a plate full you have. I'm no expert and I have very limited intimate experience, so I'm going off what I know to be true for my beloved sister who had pretty drastic surgery for oral cancer and who tries really hard to get enough liquid nutrition (ensure it is) to avoid that tube and port deal that she was on, seemingly, forever. Hydration was a major problem which only compounded other problems.
So, out of fear of hearing you endure some things that she did until her top notch UCLA team figured it out, I echo what Dixie suggested.
Consider that boost with the IV. Yes, it's an inconvienience, but there's that ounce of prevention, ya know what I mean?
Praying for ya, hoping for good things. Keep fighting the good fight.

We're cheering to Dixie's pompoms. ;-)