Survived my first remicade infusion
#325188 - 02/21/08 12:40 PM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Wow, its been a really stress full week. I found out just a couple of days ago, that my insurance only pays 80% of my needed remicade infusions. Just for the DRUG alone, not the IV or nurses or other supplies, just the DRUG COPAY is going to be at $500-600 per each infusion. Thats 2 infusions this month and than one a month for life!!!!!! My copay is going to be more than my weekly paycheck!
I started calling helplines, charities and foundations like crazy, over 20 in all and no one will help. The reason is that even though remicade has been on the market for a while, not exactly sure how long but about 10 years or so, it is only fda approved for crohn's, rheumatoid arthritis, and a few other auto immune diseases, not sarcoidosis.
I am working with an insurance agent at the moment to see about switching my blue cross plan to one that pays better on the remicade but thats not looking promising either. I have no idea how I am going to pay for these treatments but I had my first one this morning. I was exhausted and slept through most of it. Luckily, they got the IV in on the first try, I am a hard stick and was very happy about this. Then they hook you up to the drug, pretty much just like a saline drip thing and it takes about 2 hours for all the medication to go in. Since it was my first one and allergic reactions are common, they made me stay for another hour.
I am at work now, rather tired still and feeling a bit head achy and nauseous but relatively ok. I am still swollen and hurting but I know it takes time to work. Lets hope after going on 4 years of being sick and in pain, they have found the right treatment!
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Taking it one day at a time.....
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Congratulations! I sure hope it works and works well for you. I can't believe how expensive it is though. Also, that no one will help pay because it is not authorized for your condition. You would think the hospital (or wherever you go) would be happy with 80%. That's a big chunk. I hope your insurance agent is able to find a good solution.
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Glad to hear you survived the first treatment. I really hope this does the trick for you.
Sorry to hear about the $ issue. It's pretty ridiculous what some drugs cost. You were diagnosed with RA at one point. Have you talked to your Dr. about saying that is still part of your Dx so you can get more financial help? Just a thought.
You are one tough woman for going through all this and still working! Even in the same day! I'd be on the couch having a pity party for myself :P
I hope the meds work quickly and you start feeling better soon. If this treatment does the trick it'll be worth the money. And maybe you'll have more energy for a different job? If you think you need to make more money.
I hope you and your husband are doing well also.
Please continue to keep us updated as everything progresses. You're in my prayers.
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~Mary
Had surgery for rectal prolapse in Sept. '06 and feeling good now! Loving life with our IVF miracle #1.
 
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Lets hope this needle is your magic wand!! I'm glad they didn't have to poke you more than once. That's a relief in itself.
I'm sorry about your insurance coverage though. Being Canadian, I don't have that concern and can't offer any suggestions. We need a "fix Michele" foundation!
Good news is tomorrow is Friday and you can rest (hopefully) this weekend.
All the best!
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up! 
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The boss is in with a patient so I just have a minute to respond to you all. But, I do feel better!! Not wonderful but I definitely am less sore and hurt less! My hands are still swollen but not as painful. My chest still hurts but I a sure it will take some time for the granulomas to shrink in there. I am very hopeful!!
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Taking it one day at a time.....
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Yeah!!! 3 cheers for Michele I hope things just continue to improve. Go away pain!!!
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~Mary
Had surgery for rectal prolapse in Sept. '06 and feeling good now! Loving life with our IVF miracle #1.
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Yes, yes, pain be gone. Swelling away from thee. I hope it continues to get better and better.
Susie
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Good luck with this Michele. I hope you begin to see a change for the better, very soon! Wish I had a million bucks, I'd share some!
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Ladies & gentlemen take my advice, pull down your pants and slide on the ice.
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Well I sure hope this is one big step on the way to recovery. That bill, though! Omigosh! I'll be thinking of you. I hope there will be someone out there just ready to hand over some dough to help you out.
BIG HUGS!
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Flipada - IBS-C "It's a gas, gas, gas"
**Lauren**
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Got the IV on the first try?? HOORAY!! I can celebrate that!  
Are there any doctors you know who know of studies involving the treatment of sarcoidosis? Maybe the major research hospitals know of doctors conducting studies. Are there any help groups where you can ask fellow sufferers how they pay for their treatments? Those $$$ amounts really suck. Hard. 
Maybe we should all start playing the lotto. Or buying stock in remicade...
{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}
~nelly~ 
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I was doing pretty well, considering. I slept in Saturday but got up and worked out 25 minutes on my elliptical than cleaned the house for about 1.5 hours, took a shower and went to the grocery store. I was exhausted by then so just made like a couch potato.
Sunday, I woke up really stiff and sore. I managed to give my two dogs a bath but that was it. My hands are terribly swollen and are SCREAMING in pain, my hips, chest and knees hurt and the rest of me aches, a lot.
I had been doing really good with my workouts, at least 3 times a week and I had gotten up to 30 minutes plus stretching and some hand weights. I set my clock to get up early today to workout and I was so exhausted. I got up to pee and hurt all over and climbed back in bed until I had to get up for work.
I feel like a failure. I am trying so hard to lose weight. My friend is getting married May 3 and I am in the wedding and have a bridesmaids dress to fit into, it didn't come in plus sizes.......
I was SO hopeful Fri and Sat that the infusion worked but now, I feel let down, empty, depressed and I want to cry. I know it can take several treatments and that I can't give up yet, I know that in my head but my heart isn't listening. I get another infusion a week from Thursday. They are so expensive, I hate to throw away money if they don't work but than again, I have no other option. I have exhausted all other treatments.
I am at work, luckily the boss is not in but since my hands have been hurting, I haven't done any filing and its overflowing the counter. My poor fingers are at least twice there normal size.
When will I catch a break? I feel like crying but the tears won't even come anymore, I think I used them all up.
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Taking it one day at a time.....
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Wishing you the best Michele. Hope and pray that this works for you. {{{hugs}}}
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Sweetie I am so sorry. But try to keep your chin up, keep telling yourself it takes time & that you WILL see some improvements once the med starts working. I know it's hard but please know we're all with you & wish you the best. You've come this far...you can make it into that dress in May. Hope you start feeling better soon!
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IBS-A...I can never make up my mind
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Michele,
I'm so sorry about this setback. I hope you feel better asap! You might ask the doc if this kind of ricochet is normal...?
Please don't give up hope! I would take the two days of feeling well as a great sign!
Hugs!
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Christine
Those who can do; those who want it done better teach.
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Oh Michele,
I'm so sorry. I know how disappointing it can be when things don't work as quickly as you'd like/hope they would. Really...keep in mind that you had a couple of good days. Sounds like you accomplished a lot. That must have felt good. Try to concentrate on that. Maybe the next treatment, you'll have a good week. And the next...who knows?
BIG HUGS until then.
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Flipada - IBS-C "It's a gas, gas, gas"
**Lauren**
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Maybe you just overdid on Saturday. A common thing to do when you are feeling well after being sick so long. Your body has been so stressed by illness that it just isn't going to bounce back to full steam ahead. Try to pace yourself. It's going take a few trials and failures to figure out just what you can do and for how long as you continue to improve. So don't feel like the treatment failed yet.
And, while it is nice to have a goal to fit into a bridesmaid dress, if it doesn't happen, it doesn't happen. Your health is more important. Also they may be able to alter it or you can get another dress in the same color if your friend really wants you in the wedding party.
And for your mental health's sake, give yourself credit for all that you are doing and have done. Don't focus on what you haven't done. Just causes anxiety, depression and hopelessness. You've really done a lot researching and getting tests and treatments, working, taking care of the wee ones, etc. Your weight is not your fault either. So many of the drugs you have taken cause huge weight gains. I'd be a blimp if I took them.
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My shrink said the same thing this morning!! That I need to concentrate on all that I am and have done and not focus on what I can't do. This has just all gone all for SOOOO long, I am mentally exhausted and my body is broken! 
I think I will be able to fit into the dress, if I could just lose another 10 pounds between now and May 3. I am only eating 1200 calories a day, can't eat any less or I will pass out!  I need to exercise but I just can't right now, maybe after the next treatment.
The good news is that I found out that I have a $1500 cap on out of pocket expenses!!!! Thats still a lot of money but it sure beats what we were looking at!!!! 
If the swelling and PAIN in my fingers would chill out, I think my disposition would improve a bunch!
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Taking it one day at a time.....
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I am hoping with each treatment that I feel better longer. I guess my patientence is wearing very thin! Thanks for the hugs
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Taking it one day at a time.....
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From what I have read, this does seem to be normal. I guess it really does take several treatments before it really begins to work so I should take the couple of good days I had and cling to that hope!
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Taking it one day at a time.....
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I know its going to take some time but I want to feel better NOW! I feel like a 2 year old having a tantrum but I have been so sick for so long!
I have stayed off the scale on purpose but my pants are getting too big so thats a good sign. The dress is at my girlfriends, I should go pick it up and try it on but I am sort of afraid to as well! They are going to have to make it fit one way or another! I am eating 1200 calories a day but I just can't lose much weight without working out. They also haven't gotten my thyroid straightened out yet either which isn't helping a darn thing! Or my growth hormone! It seems that the deck is stacked against me when it comes to losing weight right now! 
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Taking it one day at a time.....
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So sorry you aren't feeling well, Michele. {{{hugs}}}}
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Michele-
I am so sorry that you are feeling lousy again. It does sound like maybe you overdid it on Sat. Give the meds some time. I know it must be so frustrating to try and be patient. I am glad that you are making some progress in your diagnoses. *Hugs*
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Did you have your second Remicade infusion?
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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Somehow I completely missed this post, Michele. I feel so bad!! How are the treatments going? Have you had more?
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Lisa, IBS-C (Vegan)
Stable since July 2007!
Mommy to Rhiannon Marie (Dec. 13, 2008)
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Re: update
#326899 - 03/20/08 11:21 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Yes, had the second infusion the first of the month. It went well and I had several good days followed buy several bad days than its been a steady climb up. I think they will end up being a very good treatment for me. I have been feeling ok, my hands and feet still swollen and painful but overall much better. I still have a lot of aches and pains but nothing compared to the pain I was in. I still struggle a bit with fatigue but that seems to be improving as well.
I am actually doing some major spring cleaning at the office. Probably several days worth so I am sure I will be sore. I have been able to work out about 3 times a week and I am down 18 pounds.
I will be getting my infusions monthly now at the beginning of each month. Now, if Spring would realize the calendar says it should be here, all would be happy!
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Taking it one day at a time.....
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Re: update
#326906 - 03/20/08 12:07 PM
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Sand
Reged: 12/13/04
Posts: 4490
Loc: West Orange, NJ (IBS-D)
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This all sounds like very good news, Michele. I'm so glad.
And, yes, it would be nice if Spring would hurry along.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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That's great news, Michele! And congrats on the weight loss, too! Did you ever find any help with paying for the treatments? I can't imagine having to spend that much money on treatments every month!! But I guess if it helps you feel better, you find away.
How are things with DH these days? Has he been supportive of your new treatment plan? I hope things are going well for you.
Good luck, Michele! I think of you often.
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Lisa, IBS-C (Vegan)
Stable since July 2007!
Mommy to Rhiannon Marie (Dec. 13, 2008)
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Re: update
#326938 - 03/20/08 03:32 PM
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Toady
Reged: 04/06/06
Posts: 1299
Loc: A small city, Northwestern Ontario, Canada
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Quote:
I am actually doing some major spring cleaning at the office. Probably several days worth so I am sure I will be sore. I have been able to work out about 3 times a week and I am down 18 pounds.
Gee, can I give you the key to my office? It's a dust bunny heaven and the cleaning staff think they are pets not pests!
Good for you with the weight loss too!! I'm so very happy that you are starting to feel better with this treatment, even if it is only a couples days at a time.
Take care, and Happy Easter!!
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up!
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Re: update
#326943 - 03/20/08 05:35 PM
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Susie2
Reged: 08/07/06
Posts: 158
Loc: Pomona California
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Glad to hear that something is finally working. May you continue to have more and more good days. And wow on the weight loss. Amazing. Where do you get the energy to work out? You are one determined lady.
Wish I could have gotten my new glasses at your place. I had the most bizarre experience with new optometrist. She and the optician got into it over whether my prescription would fit in the glasses I selected. And she (optometrist) kept handing me the most atrocious (and probably most expensive frames to try). Plus my eyes were dilated and I couldn't see a thing. I was there 2 1/2 hours. Finally I said I was getting sick, couldn't see and had to leave. I came back a couple days later and talked to the optician who saved the glasses I liked and reassured me they would work and be light weight. Of course, the optometrist had to come out and butt in again, handing me yet another atrocious pair of glasses. I plan to go somewhere else for another pair. I downgraded the lens to a no lines polycarbonate rather than a high index and with my insurance (VSP) they still cost me $350. And that is with an inexpensive frame ($150).
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Christine
Those who can do; those who want it done better teach.
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This is great news Michele. I hope it continues to get better and easier. And the warm weather is just around the corner...
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Ladies & gentlemen take my advice, pull down your pants and slide on the ice.
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Re: update
#326976 - 03/21/08 10:45 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Sorry to hear about the bad eye appointment!! There is a lot more to getting the right glasses than most people think! I hope they turn out ok.
Its hard to find the energy, its a balancing act. I am doing a major cleaning at the office so I have to skip my work-put as it would be too much. I have to pace it just right, too little exercise makes me stiff and sluggish and too much puts me in bed with major pain.
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Taking it one day at a time.....
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Re: update
#326978 - 03/21/08 10:47 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Dust Bunnies, heck, I have dust elephants! I honestly don't think the office has had a good cleaning since like last August so its pretty bad.
Thanks on the weight loss, I wish it was ore, its just really slow coming off but I have to remember to be proud for what I have done and not be sad about what I can't control! 
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Taking it one day at a time.....
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Re: update
#326980 - 03/21/08 10:50 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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We found out that we have a $1500 cap, that means once we have spent $1500 total out of pocket, than everything will be covered at 100%. Its still a lot of money but a whole lot better than what we were looking at and we will just have to make payments on that!
Hubby and I are ok. We are working hard on making the relationship work and he is being supportive. I can't say its all warm and fuzzies but we are working things out!
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Taking it one day at a time.....
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Re: update
#326981 - 03/21/08 10:51 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Thanks Hawkeye and bring on that sunshine and warmer weather!!!
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Taking it one day at a time.....
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Re: update
#326986 - 03/21/08 11:31 AM
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Mary_V
Reged: 05/09/06
Posts: 544
Loc: Grandville, MI
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So glad to hear things are improving, Michele!! Every little bit makes a big difference. And way to go on the weight!!! You are a super woman Glad to hear you won't have to continually pay for your meds. Even though it's still a lot of money that cap makes such a difference. And I'm glad to hear you and DH are working on things. Again, every little step can make a difference. Sounds like all in all things are heading in the right direction. Keep up the good work. One day at a time. Keep us updated.
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~Mary
Had surgery for rectal prolapse in Sept. '06 and feeling good now! Loving life with our IVF miracle #1.
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YOu go girl! I am so happy to hear that you are doing better. Congrats on that weight loss! I am proud of you. I am right there with you hoping for some warm weather, but as I look out my window right now, I see the snow coming down and it sounds like we are getting 4-8 inches of the white stuff! Happy Spring and Easter!
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Its not here in NYC yet either. The wind was so strong it practically knocked me down today. Its hard to be patient with waiting for spring around this time, when it feels like we deserve sunshine and warmth!
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Ladies & gentlemen take my advice, pull down your pants and slide on the ice.
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I just cleaned the office and put up the spring stuff with flower decorations. I thought that if I put up the flowers, they will come! Instead, I hear we are in for another 2-4 inches tonight. Ugh!
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Taking it one day at a time.....
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I do feel more positive and that things are going in the right direction. I am having more good days than bad and feel mentally stronger.
I went on a two day cleaning frenzy in the office at work so I am really hurting but it feels good to have done it!
I am up for my next infusion next week and looking forward to it!
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Taking it one day at a time.....
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