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rob
08-22-2008, 08:07 PM
Sorry to be so negative everyone, but I hate being sick. I hate Lupus. I hate MS. My father and I went out this morning for a easygoing day of flying our R/C model planes. I couldn't seem to get my brain into gear and felt like a kid riding his first bike. I've been flying both models, and the real thing for many years, and today I seem to have forgotten everything I ever learned. I had to have a friend of mine who was there flying his own model take the controls and land my plane for me.

No big deal. I have bad fog some days, and I just let it slide as there's nothing I can do about it. We packed up, and took the scenic road by the ocean on the way home. We were going to stop and get some lunch at a little roadside seafood shack we like, but I got sick in the car. I have a terrible problem with my TMJ/jawbone on one side. For no reason, it started hurting really bad. It went to my ear, and into my head like an ice pick. The worst pain i've felt in a long time.

Dad was asking me if I was OK when my eye on that side went blurry-whiteout and I got sick to my stomach. We didn't stop to eat. I didn't look out the window on my favorite road, to enjoy the scenery. We didn't stop at the hobby shop where we get our planes. We always stop there as it's along the way, and it's my favorite thing to hang out there and see all the cool, new models, and BS with the owner and other people who are always there. The pain was so intense that I didn't care where we were, what we did, or what would happen. It was blinding, and had total control.

Tonight, I have swollen fingers, and feet. They burn and itch badly. I have a pain in my wrists that is not a dull ache, but a sharp, like broken glass in the joint feeling. It's shocking, is the only way to describe it. I'm used to the daily aches and pains, but this is different. A perfectly good day was totally ruined. I don't think it's much to ask that I have a few hours with my Dad, flying our models and going out for a frigging shrimp basket. I'm just hurting and frustrated. Don't know what this new bout of pain and vision problems means, if it even means anything, and at this late hour, I don't care.

Thanks for listening. Thanks for letting me unload, and blow off some steam. Gonna try to get some sleep. I hope all is well, or at least tolerable for you all tonight. Goodnight all.

Rob

sits_inthe_corner
08-23-2008, 01:27 AM
:( That sucks....

I'm so sorry your day got blown out of the water. Hope you are having a restful and a deep healing sleep.

Hugs Rob, rest well.

laurid8967
08-23-2008, 09:13 AM
Rob
Im so sorry...there are days when its just TOO MUCH!! You have every right to expect small pleasures in life without feeling ill...You deserve it and youve earned it, and - bottomline - just isnt fair sometimes.
I identify so much today...I went to the ER yesterday - about that unbearable hip pain - and its apparently bursitis, though the prednisone Im on should be taking care of that.
Today, my mom and dad took my son, Jack to Hampton Beach, NH to play in the arcades, etc. I couldnt go - there is just no way I would feel well enough for that long...it is so upsetting, disappointing....discouraging...The summer is almost over and I have not done ONE THING with my kids this summer. I dont mean to hijack your post, Rob, I just understand so much - I feel ripped off...
I hope this post finds you a bit better. I am unable to stay awake today for longer than an hour or so...My sleep was horrible - Im having night sweats, bad dreams - theres an infection somewhere in my body...
Let us know how youre doing today Rob, if you can, OK?
Prayers and warm thoughts coming your way
Love Lauri

rob
08-23-2008, 09:54 AM
Hi Lauri,

You are not hijacking anything. Please don't worry! I'm doing fair today. The itching is going away, as is the swelling in my fingers. I know it hurts you to have to be excluded from the fun your son is having today. It isn't fair. Can you try to do something with your kids indoors? An afternoon of building Legos can do wonders. I bought my young nephew a plastic model airplane kit, and we had a great day last week indoors putting it together. I learned how to play one of his Star Wars games on his PS2, and you would have thought I was Luke Skywalker himself after that. "Man, Uncle Rob is Cool" was all he could say. Maybe something simple could give you the participation you want, and so desperately need.

Sounds like you have one heck of a case of bursitis. Back when I was in the firearms industry I had it terribly in my right shoulder, test firing rifles all day long really made it almost unbearable. It was the sort of pain that would take your breath away. Naproxen Sodium (aleve) is the only thing that ever helped, but it's hard on the stomach.

As for me, I'll be OK. The weather was so good yesterday, I felt good when I got up up too. It was just so disappointing, and the pain, grrrr! My father, as always, has someting funny to say. He stopped by this morning, and said look at the bright side, you could have hurled after having wolfed down a basket of shrimp and a beer, all over the hobby shop floor! Hearing my father, who is 72, use the word "Hurl", is hilarious. Anyway, hang in there Lauri. I'm thinking of you. And things for you, and I, will get better. We're only getting started.

sits_inthe_corner
08-23-2008, 12:05 PM
:lol:

Ah Rob, I love your Dad...what a great guy. Know wunder you enjoy spending time with him.

I'm glad you're feeling better today. I am to...would have had a better sleep if my rotten little cat hadn't decided I "needed" to feed him at 4:30 :shock:

Lovely day here...not too warm or too cold.

Hope you're having a great day :)

NoodleMom
08-23-2008, 01:50 PM
Oh Rob, Im sorry. This life does suck when even the simple things are ruined.

Hope you have a better day to come.

Kasey

KathyW1958
08-24-2008, 07:56 AM
Hi Rob,
I am sorry to hear that you had such an awful day. It is sad the way this illness does us. I hope that you get over this and feel better in the days to come.

Hugs,
Kathy

Saysusie
08-24-2008, 10:11 AM
Rob;
This is the place to come when you need to vent and, as you've seen, so many of us understand and empathize. I am so sorry that your day turned out badly with you being in such pain. I'm glad to hear that you are feeling better :lol: And I have to ditto SITC...your dad is "dabomb".

Once in a while, I will say to my husband that I'd like to know what it feels like to just have one day (a measly 24 hours), with no pain, no nausea, no debilitating fatigue, no migraine, and no depression. Just on @!#$#@! DAY!!!! Is that too much to ask?????
Alas, that day has never come and I don't expect that it ever will. Healthy people do not have any clue how precious their days without illness are!
I'm happy that you had a good time with your nephew and that he thinks your are "cool". Hopefully, the coming days will be kinder to you. But, please know that, whatever you day turns out to be, we are here for you.

Peace and Blessings
Saysusie

laurid8967
08-24-2008, 12:52 PM
Hey everyone -
Thanks for the kind words, Rob....There is nothing like being the "cool" uncle/aunt!! Im glad you had fun...We have EVERY SINGLE StarWars PS2 game there is...My husband is like you, a grown man who thinks he may actually BE Luke Skywalker...lol
I do plan a lot of indoor fun activities for Jack - even just renting a movie on my bed sometimes does the trick. Also, thank GOD my hubby is such a wonderful Dad. He literally spends all his free time with Jack - they adore each other.
Sometimes I can deal with the fact that I cant do everything I want to do - somedays - I just cant stand it...I know it will get better...The one constant in life is that it always changes!! There will be good and bad and inbetween...We have to try and hang in there...
Im gald you woke up feeling better, too. Your Dad is a hoot!! What a little laughter does to the day, huh?
Hope today is going well, too.
Love Lauri

rob
08-25-2008, 05:22 AM
Good morning all,

Back to the the Med Center today for more tests. Want to crawl back into bed and hide. The other day's pains have given way to new ones in more of the usual spots. Just ONE DAY would be a miracle Saysusie, but I don't see it coming. To be pain/symptom/disease free for just one day. That would be something.

The good news is I finished my 2nd round of IV steroid treatment last Wednesday, and It seems to be agreeing with me far better than the first round did. Maybe because I wasn't as scared, or I knew what to expect, but I didn't have the weird insomnia and lack of appetite from it. I can't remember what todays activities are. I just know it's nothing major, so I'm on autopilot. Don't know, don't care, just point me in the direction I need to go. Want to be done with it and come home and hide.

I'm glad you sound a bit better Lauri. I do understand about missing out on a childs life. Believe me, I do. Sounds like you are one heck of a Mom to me. Try not to beat yourself up too badly. Remember, you didn't ask for, nor do you deserve what is happening to you. Hope you have a good day. I'll talk to you all later. Thanks again everyone, for lifting me up enough to keep me going for another day.

Rob

sits_inthe_corner
08-25-2008, 02:11 PM
Hugsss Rob,

Hope your tests went well, and the day didn't drain you too much. When you're up to it, let us know how you made out.

Saysusie
08-26-2008, 10:29 AM
Ditto what SITC said, Rob. When you feel better, let us know how your tests went. I'm glad to hear that the second round of IV steroid treatment went better :lol:

Like you, I don't see that 'one day' free of symptoms coming. But, I am ever so hopeful that it might :lol: So, I cling to that!

Peace and Blessings
Saysusie

mnjodette
08-27-2008, 07:10 AM
How are you today, Rob? Hope the tests weren't too terrible. It just seems like a very cruel joke some days, doesn't it? You're sailing (or flying!) along, minding your own business and then..WHAM...some crummy disease sneaks up and flattens you. It tries to steal time, peace of mind, confidence, joy....tries to take control. I spend a lot of time in denial...pushing through the pain when I can. That works sometimes. You're dealing with some serious stuff, Rob, so 'pushing through the pain' would be pretty tough. I'm so impressed with all that you do in spite of your illness. And your Dad....what an amazing guy...you are so lucky to have him!

Lauri, I have bursitis in my hips, too. It comes and goes, and prednisone didn't always control it. I've also had cortisone injections in my hips, twice. Didn't touch it. For many months it was so bad I could only walk a short distance before I had to sit; felt like I was sleeping on rocks. Then, it was gone for a short while; now it's back again. You've gotten some good advice. Do what you can; make memories with Jack out of the things you're able to do with him. Believe me, whatever time you spend with him will be what he remembers. It won't matter if it's indoor, physically easy stuff. He just wants your time and attention. You are a good mom to care about that...not all do, you know. I hope today is a better day.

Jody

rob
08-27-2008, 07:42 AM
How are you today, Rob? Hope the tests weren't too terrible. It just seems like a very cruel joke some days, doesn't it? You're sailing (or flying!) along, minding your own business and then..WHAM...some crummy disease sneaks up and flattens you. It tries to steal time, peace of mind, confidence, joy....tries to take control. I spend a lot of time in denial...pushing through the pain when I can. That works sometimes. You're dealing with some serious stuff, Rob, so 'pushing through the pain' would be pretty tough. I'm so impressed with all that you do in spite of your illness. And your Dad....what an amazing guy...you are so lucky to have him!


Jody


Hi Jody,

It's great to see you back! I had some routine blood work, and another Evoked Potentials test the other day. I'll see my neuro next week to look at the results. The tests this time are just to monitor the progress, or hopefully the lack of progress of the MS. Going back out flying again tomorrow. I'm going to try to get out and do some sailing this weekend. It's prime whale watching season right now. Hopefully we'll see some blue whales. I saw a couple of them last summer. I was out about 10 miles from shore and suddenly my sonar/fish finder gadget went off the chart and started blinking error on the screen. Next thing I know this gigantic whale surfaces about 50 yards out and makes a huge splash. The typical blue whale is around 80 feet long. It's an awesome sight. Taking my camera this time. I hope all is well with you Jody. It's good to have you back.

Rob

NoodleMom
09-13-2008, 05:23 PM
me too rob

Tohaveornot
09-14-2008, 06:33 PM
Oh Rob,
I'm so sorry. I don't know what else to say. This disease is a major pain. Figuratively and literally.
I only hope that days like these get rarer and rarer for you.
-Hil