Day of reflection

[navydad]

I am working a double shift today,, dragging my sore tired body around trying to get alittle cushion saved up before i and get this (back, brain surgery done),, Yesterday was having trouble breathing,, wasent stress or anything,, I was just gulping for air, so my wife took me to the ER,, first they think heart attack,, so they run the blood work for that,, its all good,, even ran a CBC,, it was all l normal so I get a chest CT,, and a Abdomen CT tossed in,, nothing showed up, excelpt a few gall stones,
  Anyway,, I missed my neuros appt becasue of the hospital which wanted to keep me overnight and treat the chest pain with some kind of antiimflammoratry,, I told them no thank you,, this was same place that after a 4 day search in 07 said I needed psych help,
But back to where i was going with this topic,, It occured to me that the nerve damage is prob permanent,, my feet will burn forever,, my legs will burn,, and my stomach will never work right again, I think its all gastroparesis, nothing seems to move  through,
  THen I have this Chiari thats going to get operated on,, what will this do to me,, what symptoms will quiet down, the surgeon said he thinks he can help me,, but at what cost to me,, and what exactly will get (fixed),
  Basically I;m scared,, not of the surgery itself, but like I said,, what exactly is going to get (fixed), I cant imagine the nerve damage getting fixed, or the stomach issues, and I am becomeing so intolerant of heat and cold,, will it fix that?,, or is that part of my body dead forever,,
  I;m just tired of living with something I have no control over,, and dont want to give up control of my body to this dam disease, and I just want my family to understand that I am not going to get a sent from heaven miracle after t5his surgery,, I told my boss today that i;m going to get surgery, and woeuld be off work for at least a month or longer,, he took it well considering I just got back to work in May after being off for six months,
  I;m just tired of calling doctors,, and I think thre tired of hearing from me, i;m ready to fire my GP, hes pretty uselss,, but trys at times,, I just dont know what to do half the time,, between the fatigue,, working and just feeling sick all the time, I have no life,, just work,, try to eat, and sleep,, which isnt easy anymore,, I just cant sleep without gagging on that stuff i have for mucos,, the surgery definately wont fix that,,
anyway sorry for the l0ong rant,, I;m just here thinking,, just how bad life has become in the last two years,, how its affected my life,, my wifes life and my two boys,, who saw there dad wilt away to nothing,, got weighed yesterday,, with clothese on i weiged 138 pounds,, my clothese hang on me,, i cant gain a pound,,

[Bucky]

Navydad,

I don't know what to say . . . I've sat here looking at this screen trying to figure out what kind of encouragement I could send you.  These last two years have been really rough for you - I can't even begin to imagine how difficult it has been dealing with everything you've been dealing with.  I'm sorry just doesn't suffice.  Believe me, if I could, I would wave a magic wand and restore your health and every member on our forums health.  Unfortunately, I can't.  I can keep you and your family in my thoughts and prayers.

I can also send you a virtual hug . . . (((Navydad))).  Keep on, keeping on.

Hugs,
Bucky

[lynnmarie219]

Navydad,


I'm also at a loss as to what to say...no words will express how I feel about all of these issues you have dealt with (not to mention the doctors) over the past few years.

Like Bucky, I can tell you that I am thinking of you and your family and truly hope that you will get some resolution and answers to some of this mess you have going on within your body.

Hang in there....we are here if you need someone to listen!

[Scottietottie]

Hi Navydad  

I haven't read up much about chiari but if its something that is messing up your nervous system - fixing it has to be likely to have some positive results. I don't know what it will, or won't do but I truly believe that thinking positively about operations helps us get through them better.
I think you're right to be realistic and not think it's going to be an amazing cure - but you have to leave yourself room for hope of improvement.

I so hope that it does. No - it won't cure your sinus problems. I hope someone is still working on something that will help that. I guess you will find out what this chiari has been doing to you and be able to separate it out from what SjS does.

Please - for your own sake and - recuperation - try to see an 'up side'.

Take care - Scottie  

[irish]

navydad, I can't say anything that will make it better. Wish I could. Life just can give us so many things that are totally horrible at times. I understand your feelings of frustration over the whole darn shooting match. This really is not any way to live but when you come down to it you are giving it a good shot.

You have kept on working even though you are miserable beyond belief. I know it has been unbearably hard on your wife. Coping with chronic illness can really be hard on a spouse. Some people are better at it than others. All I can say is that you are on auto pilot and the surgery is coming up. You have worked so darn hard to get attention from the docs and finally got it.

I guess if it was me I would go into that surgery expecting nothing and if improvement happens I would be thrilled to death. It is going to be so interesting to see how things go as you have always sounded like you had an enormous amount of neuro problems. It will be interesting to see how much is left that you can attribute to sjogrens. If you feel 25-40% better than you do now I would think that would be a good thing. As for the mucus. Hang in there cause it might be that after the surgery your mucus might improve. The mucus production has a neuro component so things might improve. I have been living for the past 10 years with a lot of mucus and infections and it really is the pits. I have had to sit up in recliner to sleep for many years.

Also, you will have IV antibiotics again when you have surgery and maybe any infection in sinuses will improve. Stay on the autopilot as this way you are not expending any energy thrying to think positively or anything else. Also, if you can every get some relief and get some sleep you will be surprised at how much brighter the world looks. I am not trying to sound overly optimistic, but want to encourage you not to give up. I will pray for the surgery and your family. Irish

[JenJen]

Navydad--

You may have mentioned this somewhere in a post, but with gastroparesis you are obviously suffering from malnutrition and all that goes with it.  Are you planning on getting a J-tube (bypasses the stomach going into the small intestine) to try to regain some weight and energy?  This doesn't have to be a permanant thing, esp. if they can pinpoint what has caused the gastroparesis.  I lost 40 pounds in less than 3 months due to a severe depression/anxiety bout when my mom was dying from cancer (and my new and mysterious neuro. stuff popped up).  I felt absolutely horrible and was wasting away.  Now I have my eating back under control-not gaining but not losing- and I can see how the lack of food and chronic diarrhea sapped everything I had.  I also started Prilosec, which for some reason stopped my diarrhea.

Hoping things improve for you soon...

[Jules48cats]

Navydad
Sorry to hear about all you've been going through.  I can't imagine working full time let alone double shifts.  All I can say is that in my life, when things go really bad and I get through it all.  Something good comes along, even if it is small.  Hope things go well with your surgery and treatment!  I will keep you in my thoughts and prayers.   
I know sometimes it is so much harder because we can't have a good cry!
Jules

[missyb]

   I'm sorry

[navydad]

After some thought,, I am going through with the surgery,, I cant take the chance that this thing will get worse and i;l be siting in a wheelchair without the use of my arms and legs alltogether, I;m going to just try to do what I can from day to day,, as for j tube,, I havent been talking to any gastros,, its just hasent been high on my list of more doctors to see,, My friend from Indiana is coming in  for teh surgery,, shes my closest friend and is going to treat me like a baby for a week or so til i get back on my feet somewhat,, then if things are looking good,, I;m plannning on going to Indiana to recup a bit,, just to get away from Pa for a while,, I like it out tehre,, just sit on the porch and wave at the farmers,, it will do me good,,

[jaygee]

Navydad, I look forward to reading (after your surgery), that you are sitting on a porch waving at the farmers.  That sounds a nice and relaxing thing for you to do.  Take care.  xx

[Dolly Dimples]

  Can't add much more to what has already been said my friend, only that you know you have the support of all of us here,

Many here have feelings of despair too, so know exactly  how  you feel.

   I will think and pray for you Navy Dad , that this surgery will do something.. if not solve it all, then at least it would boost your spirit's a little .

   Irish speaks very wisely, and her words must be an encouragement to you. 
                                                                                                            God Bless , Dolly x
 

[Scottietottie]

Hi Navydad 

That sounds like a good attitude. Have the surgery - see how it goes. Give it a chance. Recovery from any surgery can take a while. Work with the therapists. I'm glad your closest friend will be with you and your plans for recuperation sound good too.

Seeing a gastro doc might be an idea. I know the neuropathy has been really bad but the gastro problems sound pretty dire too! Maybe when you've had the surgery they will be interested in how 'things are moving' - or not as the case may be. Hospitals have always been interested in bodily functions after surgery in my experience!

Keep us posted. We're all rooting for you.

take care - Scottie 

[navydad]

Thanks everyone for the replies,, today been really rough,, I just dont get enough sleep for one thing,, and for some dam fool reason I tried to rolerblad in the driveway,, went about 10 feet fell flat on my elbow taking a pretty big chunk out of it,, the Rheummy has been trying to reach me for some reason,, he wanted me to try rituxin for this neuropathy,, and I need to call the neuro and make a appoitment, about the same things, I wish my stomach wasent involved, I seem to be able to go to the bathroom somewhat,, but just a little, then it feels like all the other food I ate just slides down to the space that just got emptied out,

[Scottietottie]

Hi Navydad 

Ouch to the elbow!!!

Do you take laxatives regularly?  I have to take 2 senna every night now and I also eat a lot of fresh fruit and veg. Even 6 months ago I only needed senna now and again.

Take care - Scottie 

[navydad]

been tryig to stay away from the laxatives, its a no win thing,, either I eat and it lays there till it rots oor take a laxative and it just runs out of me, nothing seems to work,, Rheummy called,, said Rituxin was finnalapproved,, Now I dont know what to do,, rituxim wil wip out my immune system,, and getting surgery soon sure cant be good,,,