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A few small updates

Friday, July 06, 2012

My bloodwork looked fine again this week (as it always does) so they've agreed to put me down to 2 days a week of TPN. I'm ready to be done with it. Even if I lose weight at this point the TPN is over and I'll be going to a J-tube.

I got about 11 hours of sleep in a 12 hour period today. I'm still exhausted. I was woken up at about 7 1/2 hours and again an hour later by the phone calls from my infusion team, but both times I barely stayed awake while talking to them then was out cold again. I take so many meds so I can fall asleep then I sleep for such a long time. The nurse for my doctor in Milwaukee was supposed to call me this week about what changes they want to make because of all the issues I'm having, but she didn't call. I want them to get me onto the 4 day DHE to try to break this migraine, as nothing else seems to be working.

As for weather, Minneapolis hit 102* today - even hotter than they thought it would be! (We broke a record on Monday with 99* and again on Wednesday with 101*, with the heat indexes hitting as high as 112*.) A warm front is stalled, splitting MN in half - with a 30+* difference from the south to the north! It's in the high 60s in the arrowhead! Tomorrow is supposed to start a cool down, taking the metro into the mid 80s for the next several days. That's awesome, as I have a doctor appointment on Monday then the concert on Tuesday.

At about 10 pm I drove to Walmart to pick up a few items. They have 40 count packs of Rice Krispies Treats for under $9! That's 22.5c each. (I got 3 boxes, as they digest easy and I'm addicted to them.) I've been trying to find more powdered Gatorade to add to my miralax and water, but it seems like they're cutting back and phasing out the individual powder packs. Grr! I also picked up more pjs - a clearance top and cheap pj shorts. Same top I had gotten a few weeks ago, but instead of buying a similar bottom that was more expensive (like last time) I found cheap shorts that matched one of the colors in the shirt. Since I spend most of my days in pjs and many of mine are in desperate need of replacement (the shirt/shorts I'm wearing now doesn't match at all, the elastic on the pants is shot so they want to fall off and the shirt has a few holes.

  Member Comments About This Blog Post:

CTUPTON 7/9/2012 7:52AM

    A friend of mine gets botox injections in her forehead. She had a stroke over 10 years ago and has migraines since then. Just another possibility.

You are going through h@ll! I wish you well. Somehow this will be fixed. With doctors I become too patient and sometimes they don't know I am at my wits end. Have you been totally honest with them. Maybe print your blog and just hand it to them? Chris

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JOYCECAIN 7/8/2012 9:16PM

    Ask Walmart if they can order these special for you from the company. The store may cut back, but they could order them just for you and when they came in you could get them. Check. If they can't, go online and see if you can order them.

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JAMER123 7/8/2012 1:13AM

    Being from Mpls. as well, I am so glad the heat has finally broken!! emoticon
I totally understand the lack of understanding for an illness or disability that doesn't show on the outside and many people turn a deaf ear to it. I am one of those that has a disability that doesn't show. emoticon
Take care and keep a good attitude. I do hope there can be some improvement for you, knowing it isn't curable. Think of you!! emoticon emoticon emoticon

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EVWINGS 7/7/2012 5:13PM

    Awwwwwwwwwww,I'm sorry you have to deal with migraine on top of everything else. It is warmer where you are than here where the high was 89 F. Good deal on your RK treats!! Honestly, if I get even a little stain on a top so I feel embarassed wearing it, it goes for a PJ top. When knit type shorts/leggings/capris wear out so much I wouldn't wear them out, they become my PJ bottoms. I am such a klutz, that it's a good thing that I like to "recycle"!
Hopefully tomorrow will be a better day for you.

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MOM2ACAT 7/7/2012 3:29PM

    I hope your migraine breaks soon, do you think it's from the weather? I had two this week, both when storms were moving through. I guess I was lucky mine were in the evening, and the meds I take for them enabled to fall back asleep and they were gone by morning.

Great deal on the RK treats! I always keep those on hand too.

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-AIRYN- 7/7/2012 12:49PM

    I hope that they are able to break your migraine soon. Those are the worst! I never buy matching pj's. I always buy shorts and ribbed tanks or camisoles. Matching PJ's are too expensive and when I do buy them, I never wear them as a set! HAHA!!

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LADYDARYA 7/7/2012 10:59AM

    Is that good sleep or non-productive sleep? I'm hoping for the good kind? Glad your bloodwork came back good - I hate getting my blood taken - I always make sure to tell the techs to not tell me what is going on and I just look away. Did that once and still had a tech try to tell me all the steps they were taking - I had to stop them. You would think that it wouldn't be so bad but when I first started out being exposed to needles no big deal but at some point my brain said stop no likey and the next thing I knew I'd get sick just seeing a needle (coming my way anyways - I give Buddy insulin shots twice a day and it doesn't bother me but I got the shakes the first time because I was so worried about hurting him). I can so sympathize with the weather - it topped 109 here the other day... I've taken to staying inside during the day and do my shopping at night.

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MISSCUS 7/7/2012 6:41AM

    I don't like migraines either. Sorry you can't get the DHE sooner.
I make my own gatorade, 1 pak lemon lime Koolaide or whatever flavor you like, I just stay away from the bright red, orange etc, Add 1/2 teaspoon of both salt, and potassium salts called NuSalt, 2 quarts water. Mix real good and refrigerate til cold. I have been making this for years. I analyzed Gatorade's salt and potassium milligrams and measured them out. I really like saving the money by making it myself, and DH can't tell the difference.
I tend to wear my clothes til they are threadbare. gentle cycle wash makes them last almost forever.
Have missed your emails. I posted a vlog on my new home.

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PAMNANGEL 7/6/2012 8:22PM

    I sympathize about the migraine. Nasty things they are. We're about to hit a streak of triple digit weather. Not looking forward to that. Do look forward to trips to Walmart though! Always find something. Sometimes I find things I didn't know I needed!

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I figured out what was causing the allergic reaction.

Sunday, July 01, 2012

I think I figured out what I was having an allergic reaction to: the softgel casing around the CoQ10. I'm back to taking all of the new meds and last night and this morning I squeezed out the CoQ10 liquid onto food (it's kinda gross, but food flavors overpower it) and was able to get it down without a problem. I've had no reactions. A few days ago I used bandaids to tape one of the capsules to my leg and within an hour my hands were showing the allergic reaction! So now I have to pay attention to the casings on meds to make sure it doesn't have the same ingredients. I bought a bunch of this kind, so I'll be squeezing it out 2x/day for a few weeks then try another kind with different ingredients. Ugh the amount of things I'm showing allergic reactions to is crazy - yet my body won't even crack a fever to attack an infection! Kinda sucks.

I also got the okay to go from 4 days to 3 days a week of TPN. This weaning is going well. I'm glad, because my PICC keeps pushing itself out (or some of the nurses who are not so gentle removing the dressing are pulling out little by little - which I thing is most of the problem) so it will have to be removed or replaced soon.

The chilblains sores on my feet are finally starting to ease up. I've been using a few different creams and popping the blisters once they get big enough and soft enough (which normally is bad, but if I don't then they keep growing and do not heal for weeks on end - they're not normal blisters) then emptying them out a few times a day until they start to heal. Well today I was able to remove most of the hardened skin that was left so the skin can heal much easier. It's still red and a little painful, but it's SO MUCH better than a few weeks (even just 3 days) ago when I had to keep my toes wrapped in TP because the fluid leaking from the blisters would soak through my socks - wet TP is easier to remove than socks stuck to the sores. I'm really hoping it keeps getting better so I'll be able to go to the concert on the 10th with less pain while walking a few blocks to/from the venue.

  Member Comments About This Blog Post:

CTUPTON 7/9/2012 8:01AM

    Allergic to the casings! I am amazed ! And I am amazed you could figure it out!
You are a genius--you do know this, don't you!

Glad your feet are better! Thinking of you--I have your name taped right on my computer so everytime I logon or sit here enough I see it and send good vibes and prayers your way. emoticon

emoticon emoticon emoticon emoticon emoticon emoticon

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MOM2ACAT 7/2/2012 3:11PM

    I'm glad you found what was causing the allergic reaction and that it was a fairly easy fix.

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What I'd like to wear to the show

Thursday, June 28, 2012

I bought this dress a year and a half ago. With the weight I lost it was too loose for awhile, but now it fits well again (it's a size small, but fits more like a medium). It was 90% off and cost only $6! But I've never had a place/time to wear it. Until now - hopefully!

I'm going to buy a ticket and hope that I can make it to the show. I'm planning to wear this dress. Instead of the sleeve I have in this picture I'll wear one of my cut up tube socks that I prefer to wear to hide my PICC. As much as I'd love to wear heels with it, neither my feet nor my balance will allow that. So I'll probably wear socks (or my compression stockings - still waiting to get them and see what they look like) with white canvas shoes.

So what do ya'll think? Will this dress help distract from my PICC and from showing how sick I am?

My friends' band could be considered power pop punk rock, so wearing a sock on my arm really won't be all that out of place. Here's a video from a show from several years ago:
This is one of their earliest songs that many fans even in 2007 didn't know well. (I've known them since 2004 but saw them the 1st time in 2003 months after the band came together.) I was at this show and made him mess up. When he sings 'nothing more' I'm in the crowd screaming the same words, which made him laugh so hard he missed the next 2 lines of lyrix! At 1:35 during the pause, if you turn it up you'll hear me on the other side of the crowd screaming "1-2-3-4!" which he says in the recorded version on their 1st CD that most of the fans have never heard. Ah, memories.
If you've heard Quietdrive before, this is the song you probably heard. I was also at the show this music video was filmed at. I was mad at the lead singer all night and I think it was during this song that a friend in the crowd with me told me something nice he had said to her about me. After the show he basically begged me to talk to him - the fans around who heard it were seething at me! Yeah, he and I love to hate each other. haha

I could talk about them for a long time, share tons of stories, and bore all of you like crazy. So I'll just leave it at this. But know that dressing down this dress is not going to be strange at all in this setting. I've worn combat boots and skin tight clothes to their shows more often than anything else for the over 8 years, so the strangest part will be me wearing something this nice! haha I'm hoping the shock of me wearing a nice summer dress will keep them from realizing how much sicker I am than they've ever seen me. The last time they saw me I had just been diagnosed with GP and had lost only a little weight but still seemed pretty healthy. I'm kinda glad they didn't see me when I was underweight.

  Member Comments About This Blog Post:

MISSCUS 7/3/2012 8:27AM

    You look very nice, even with sock on arm. I continue to pray for you to be able to enjoy life more, and not have it be all about your medical condition, as they can really rule your life. I been meaning to email you soon, just been so busy.
I have to wear support knee highs too. Or else I have foot pain from varicose veins.
Take care and HAVE FUN! emoticon

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MOM2ACAT 6/29/2012 3:31PM

    I love the dress, and the first thing I noticed was your smile!

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PRUPLEBEAR 6/29/2012 5:46AM

    Love the dress!

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NFSISTER 6/28/2012 10:42PM

    I don't think you look sick at all. Even with the bandage people wouldn't know it was covering your PICC. I like the idea of a lace sleeve, need to punk you up a bit.

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LIVINHEALTHY9 6/28/2012 8:43PM

    You look great in the dress.

It sounds like a fun time. Enjoy!

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AYLEA56 6/28/2012 6:25PM

    You look lovely in the dress and the idea of covering your PICC with a sock that you adapt to cover it sounds good. You could probably even make the sock look elegant.
I hope you are well enough to go to the show and "Enjoy Yourself at the Show". You deserve to have some Fun. Have a Lovely Day! emoticon emoticon emoticon

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CTUPTON 6/28/2012 6:07PM

    Adorable is right! Above all, enjoy yourself! Chris

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EVLOBOS310 6/28/2012 5:45PM

    The dress is adorable! It fits you perfectly! As for the cover up - have you thought about trying a lace sleeve or long glove in white or blue? That might help cover it up and look cute with the outfit. Try local thrift stores for those items, you never know! emoticon

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ANGELBABIES2 6/28/2012 4:37PM

    Ok honey first of all the dress is beautiful and you will look great in it nomatter were you go...I would really like to know what makes you so sick so I can keep you in my prayes, I think that the dress will make you look great and no one will even notice the pic in you arm... Keep your head held high and always remember you have support and prays es for you on spark. Keep spreading the spark emoticon emoticon

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Social worker & TPN update, & hoping for a night out

Thursday, June 28, 2012

The social worker I was assigned finally called today. She's coming to my house on the 3rd to help me with paperwork and going over everything. I'm glad she'll be able to see me face to face and see what it's really like for me. As much as I hate when it happens, if I black out while she's here it will really make an impact (not that I'll be trying to do it!). I also called for the last appointment I'm waiting to schedule in Milwaukee next month. They're going to try to squeeze me in the day before my 2 other appointments and 1 blood test on the 27th. This way I can fly in on Weds evening and fly back on Sat morning.

Also, friends of mine are playing in a small club inside First Avenue (where Purple Rain was filmed) on July 10th. I've been to First Ave many times, but never inside the smaller club, so I'm a little apprehensive about going. Still I really want to go. I haven't seen this band in a year and a half and this is the ideal way to see them, as I can't be in large and rowdy crowds. It's a Tues, so it shouldn't be a drunken fest either. I called the venue and asked if they would be able to have some kind of disability reserved seating for me and I was told to call that morning and she'll set it up for me. Yay! I think I might take the risk and go. As much as I hate driving myself downtown at this point, I don't want to be constrained by taking disability transportation. If a friend can make it up from Iowa to go to the show (she's trying to work it out) I'll probably ask if she can pick me up or at least if I can meet her somewhere to drive me downtown. The other option is driving to the Mall of America (15 minutes) then hopping on the lightrail - but that means having to walk 2 blocks to get there. Never would've been a problem before, but now it might be. Just things I'm thinking about. The good thing is I've been taking Tuesdays off of my TPN, so unless things drastically change, I shouldn't be on a bag while there. I just have to make sure no one grabs my arm or hugs me too tight (which some of the guys tend to do hahaha) because it could bother my PICC.

Speaking of, since I've been able to maintain my weight, I'm going to ask about going from 4 days a week of TPN to only 2 or 3. I need to wean off more to see if I can still maintain without the extra calories. I can lose 2 lbs on days I'm not on, but I'm sure part of that is the drop in fluids because I can't drink as much water as I should, which is much less than the fluids I get from the TPN.

  Member Comments About This Blog Post:

CTUPTON 6/28/2012 9:16AM

    Having a social worker come to our home was fantastic. Hope it works for you, too. Ours stayed 5 hours! I couldn't believe it. She went over lots of options and at the end, made me a calendar of "to do" things. I thought it would be very doable. then I got stuck feeling bad with the new veggie diet an dnow with this virus! Darn. Let us know if she/he helps you out! Chris

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CTUPTON 6/28/2012 9:13AM

    This sounds doable--with all the planning you have done. Rest is planned for the next day, right? Way to go! I have trouble getting real 'living' in, too. I can't just pick up and go anymore! I have been way too tired for that. I retired last November! You'd think I'd be fine by now, but not so. Wishing you a blast! I hope your friend can go with you. Chris emoticon

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SHARPISTOL 6/28/2012 1:55AM

    emoticon I am glad that you are able to have some fun. I am just coming off an auto-immune illness (ell, I am in remission, right now); therefore, I can somewhat feel, and sympathize with you. You take care; and enjoy yourself, at that club!


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Discrimination based on a medical condition

Tuesday, June 26, 2012


I felt I needed to share this story. As a person who is on TPN also, I find this absolutely appalling. I still have the ability to eat some food by mouth and they're trying to wean me off TPN, but I've had times where all I can do is watch everyone else eat. It is hard enough on our families who feel guilty for eating in front of us, so to have a restaurant blatantly discriminate against an ill patient only adds to that guilt.

If a person has had their feet/legs amputated and is in a mall with a friend who needs to buy shoes are they forced to wait outside or to buy something just for the sake of spending money? If a person who is deaf or hearing impaired goes to an opera are they charged extra for taking up the seat a hearing person could have enjoyed, since hearing it is part of the whole experience? If an elderly person who is disabled gets on a bus and asks for a volunteer to give up a seat are they charged extra for the convenience they require to minimize their discomfort?

Too many people believe that an invisible disability or a medical condition they've never heard of means it doesn't really exist nor requires compassion. I have had a ridiculous number of people (including those in the health care community) tell me that I 'look completely healthy' when in reality many couldn't possibly imagine going through what I go through on a daily basis. Being thin isn't equated to good health in every instance.

Just last week another person with a paralyzed digestive system DIED from complications from a surgery to attach a gastric stimulator and feeding tube placement. There are NO safe treatments for this condition and definitely no cure. Tens of millions have dysmotility and thus it's far from rare. Those of us who need to have all or part of our nutrition delivered straight into our bloodstream risk infection every moment of every day. No event in our lives has a small risk - even having someone grab my arm to help me walk could cause damage or a blood clot that could send me to the hospital. Yet people look at me and think I have it totally easy. As if being denied the 2 most important human needs (food and water) is anything less than debilitating.

Getting back to the story I posted, I feel lucky to say I haven't come across such obtuse treatment myself. I explain my situation and ask for some leeway and often I get it. I'm ready to offer information and online resources if they want to know more. Still, I'm always getting looked at up and down and judged for not appearing overly sickly. If I ever am treated the way this girl and her family were, I'd be hard pressed to not make their error abundantly clear to every person in the establishment. I have a booming voice and strong opinions. If I was asked to leave I would not leave quietly and preferably not without police involvement. Discrimination for something completely out of a person's control should never be accepted!

  Member Comments About This Blog Post:

SHARPISTOL 6/28/2012 2:28AM

    Wow! I am so appalled by this story, also! I have just had an auto-immune disease, where just looking at me, you couldn't tell, I was ill, until I told you; therefore, I know what this young lady must of felt. My heart goes out to her. Even now, when out, I have to be careful that I am not pushed, bumped into, etc. because I will just fall over, to the ground. I have no steady balance, right now (I hope that somehow I can/will regain it, through exercising, etc.). I have told most of my story on my SparkPage; therefore, I will not go into it, again. I, really, don't like talking about my situation.

Unfortunately, we do have a lot of cold-hearted, rude people, in this World. Over the years, I have had some run ins with them, at times. They don't try to understand; in fact, I feel that they don't want to understand. It isn't happening to them; so I don't think that they, really, care. Heartless! And, right around the corner, from her hospital; this family had to, at all times, run into some. And, the poor mother, put into the position of trying to protect her daughter; and knowing that the whole incident alone (just discussing it), was upsetting her daughter, at what was supposed to be a joyful quality family time! My prayers are with this family.

I am still not sure what TPN is (I will see if SparkPeople has it in their A-Z Health Dictionary), exactly; however, I figure that it have to do with tube feeding. However, my prayers are with you, also. And, if there is any kind of a cure, or a way to improve it, my wish is for this to happen, ASAP, for you. Again, you take care; and take care of yourself. My best wishes to you, and your family.


P.S. I SparkFriended you!

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AYLEA56 6/26/2012 8:59PM

    This is a horrible thing to have happen. I fortunately have never been asked to leave either.
I don't have a TPN but my digestive diet is so complicated I either bring my own or eat earlier.
I even went to a bar with friends for an outing and only had water. The waitress never even questioned me or ask me to leave. Everyone else had plenty of food & drinks.

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JOYCECAIN 6/26/2012 6:30PM

    In this case, isn't this against the law? I think it is outragous.

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MOM2ACAT 6/26/2012 6:14PM

    That is terrible! I agree with you.

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CTUPTON 6/26/2012 5:27PM

    My Mom once was insulted when she did not
want an alcohol beverage in a pub setting.
I think the restaurant should respect this.
If a group hangs out and takes up a table and doesn't order,
they could be asked to please leave so others can be seated.
Politeness and common sense should rule. The manager could have
explained the rule and granted an exception in this case.
Then the family would come back and also spread the word
that this was a nice place to go. In the long run, the restaurant
would benefit from good will. Chris

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GBAUM0432 6/26/2012 4:56PM

  I agree

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