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Monday, November 11, 2013


Hey ya'll,
Just a quick post on my progress since my last post.
My new nurse is great, I miss my Donna but she became family so we still talk & we're planning lunch in the next few weeks and if all else fails we are going to Downtown Disney on my birthday in January so I'll get the chance to see her then. My new nurse CC wants to go with me & the girls to karaoke. That will probably be around my birthday too. CC will fit in with my twins very well, should be a fun night. I'll be exhausted for 3 days after but it's worth it to have some normal girl time in my life. I even got a cute new sweater dress & boots to wear. (hey it's my birthday party & I deserve to look awesome!)

Still a bit miffed with my pharmacy but won't go into specifics. Lets just say liar liar pants on fire! But we have come to an agreement, they won't talk to me unless absolutely necessary & I won't talk to them unless hell has indeed frozen over...seriously though, I love the pharmacist & the company just not the office people. I can call my "pharmy" anytime I need to so it's all good.

My pain was getting better going to the gym but now that the cooler weather has moved in I hurt more. Same places, nothing new just more often. No injuries, not over doing it just cooler weather. As anyone with CIDP knows weather affects us a lot. Hot weather we don't hurt so bad but the heat exhausts us & cool weather we have the energy but also have more pain. We can't win for losing. I did start physical therapy last week though so I am hopeful that we can at least make it more manageable. I would love pain free but realistically, it isn't going to happen & I don't want the drugs that could make me pain free. (I hate drugs) I don't have any moral objections to those who do take medications to relieve pain, I do when I absolutely have to but would rather not.

I didn't realize how much pain effects my life until I was forced to really think about it & now I wish I had given different answers. I've lived with this pain for so long that it is just a part of me & I don't realize how much it does effect my sleep, my activities, my life in general. & I wish I could write more but as I'm typing this the pinching in my shoulders is getting unbearable. So I'm off to find heat!

Till next time have a safe & happy Thanksgiving and today being Veteran's day, Thank you to all Veterans. Without you...well, this country would be in even worse shape & so would I. My family members fought in wars so that I would have the right to fight for my health...

Always believe in the magic of life.

Oh, I almost forgot to say what I'm thankful for. I'm most thankful for my family without them I'd be locked up in a loony bin for sure. I'm thankful for my lil dog, I love him so much. And my cats, even though they ignore me for the most part. I'm thankful for JJ & Twin, without them I'd be sane! I'm thankful for all that I have & all that I don't have.

Wednesday, August 14, 2013

Highs & lows

SO much has happened since my last post, well this year actually and a lot of it is CIDP related so I should have been blogging about it but, well, I get distracted easily. To begin I've pretty much lost one of my best friends over something stupid. I'll just say I feel that she chose a blood feud over her friendship with me, she probably thinks I chose to be friends with her sworn enemy rather than her. Honestly, I needed help with something & went to the person I knew could help me. Plain & simple. So moving on. (sadly, the financial problems are because of CIDP, so you could say CIDP has caused me to lose ANOTHER friend...)

I'll list my problems in my life with CIDP then I'll list the good things so I end on a happy note. I lost my favorite nurse last month. Not because she moved, retired, pissed me off or anything. I lost her because another person had a vendetta against her & moved heaven & hell to get her fired! I'm not going into specifics, lets just say the people involved NOW know EXACTLY how I feel about the situation. It won't get my Donna back but it keeps the evil wench out of my medical needs.

Next, I am apparently allergic to adhesive & pretty much every brand of tagaderm in existence. Tagaderm, not sure if I'm spelling that right, is the bandage for lack of a better word that goes over iv's & central lines & whatnot to keep the needle in place & germs out. So anyway, the pharmacy I use has known about this problem for at least 1.5 years but they haven't done anything about it. Oh well a little here & there but no full blown lets make Cheryl more comfortable even if it costs us a few extra $ she is getting IVIG every 3 weeks so she shouldn't be miserable, kind of way. More like "yeah, I looked, I didn't see anything different in the system" kind of way. So one of my nurses has gone out of her way to find some that don't make me itch. She was doing this because she didn't want to see me miserable & I love her for it. But she can't get them anymore & my last infusion was miserable. We've tried everything. We make sure the area is completely dry before putting the tagaderm on. We have used skin prep & not used skin prep, same results. We have used alcohol swabs to clean the area & we have used badidine (again spelling) no difference. I have a medi port in my chest & I have 3 DAYS of infusions every 3 weeks not 3 HOURS so a piece of gauze & paper tape or a stocking won't work. I start itching about 6 - 8 hours after the tagaderm hits my skin. Now some of you will say its the IVIG making you itch, it's not. recently I burned my hand making cookies & the band aid itched so its not the IVIG. Anyway, this last infusion I started itching about 6 hours in & during the day I can distract myself from itching mostly but I itch in my sleep & don't know I'm doing it. I scratched myself & bled & that was only the first night! When we took the tagaderm off at the end of 3 days I had welts all around the edges & they continued to itch even after putting cortisone cream or benadryl cream on them. They even started to get infected. Luckily it didn't get a full blown infection.

So I snapped & told the pharmacy that if they didn't get what I need I will find someone who will. And a few other things but I'll be a good girl & not post them. I found a link to the exact brand & type of tagaderm that they can order from in all of 5 minutes & they couldn't find anything in nearly 2 years! But as my dad pointed out, I WANTED to find them, they were just looking to see IF they could find them. Everyone says you have to be your own advocate in the health care system, well I finally realized all I'm doing is stressing myself out. So I decided to let God be my advocate, something I should have done in the first place seeing as I am a believer. In my last conversation with the pharmacy I told them that God is now my advocate & that they will do or not do whatever they are or aren't going to do & I'll do what I have to do. So, we'll see, but I do feel better after giving it up to a higher power!

Next problem, I've been having severe pain in my hips. To the point that I can't sit more than 20-30 minutes at a time, I can't lay down more than a couple of hours or stand & or walk for very long without my hips hurting. It's gotten to the point that my entire leg goes numb. I asked my neuro if it could be CIDP related & she didn't thing so. She wanted me to see my primary Dr. So I did. She examined me & listened to me & listened to my history & family history and said that even though I'm young that the pain I'm describing is typical osteoporosis and that because I had the depo shot for a few years & I had steroids & cyclosporine & was wheel chair bound for a few years & my grandmother had it that it could be starting early. She had me have an xray & bone scan done & xray is fine but bone scan says that I'm just below normal for my age, height & weight. They called it osteo pina, something like that. Early, early stages. She wants me to take additional calcium & vitamin D & walk an additional 30minutes a day. Well, its too hot in Florida in the summer, (ok, most of the year) for a person with CIDP to walk more than necessary so I joined a gym.

Which brings me to the happy part. I decided that I don't want to be in pain & hunched over like my grandmother was at the end. CIDP is enough pain on its own! I hate pain meds unless absolutely necessary & then only for a few days till something else works. So I figured I could walk on a treadmill a few times a week for as long as I can & build up from there. I went to my local you fit gym. For $20 a month I can go as many times as I want & I can bring 1 guest as many times as I want. So me & mom go, she's kicking my butt. Watching her tires me out! But I have been walking on the treadmill & using weight machines. Not on the same day, that would tire me out too much. One day walk one day weights. I even walked a mile! only once, I pushed myself. My feet burned for a few days after & were numb for a few hours & I was really tired for a couple of days so I don't know if I'll do that again. But knowing that in a pinch, if I have to I can.
And the best part.....wait for it.....the pain is getting BETTER! I still hurt but it's getting better. When I use the weights I target the muscles surrounding my hips to strengthen them. I can only do about 15 reps but its more than I could do when I started.

So, some crummy things but some happy. I hope y'all are doing well. Till next time, believe in the magic of life.


Tuesday, June 4, 2013

Can't wait to get on the road again

Its been an exciting 2 months for me. I went out with the girls for my twin's birthday. We went to the rising star in Orlando at city walk. Its a karaoke bar, I'm not a singer but my twin is & she sang her heart out with a live band & back up singers. It was great. Nice to get out like a normal human for a change.

Pics from dinner that night. Top is me & twin (I'm the blonde)
Bottom twin, me, peach & jj

The other exciting event is that Memorial day I got a bike & have been able to ride it! Memorial day I only went around my house 1 time. It was a lot harder than I thought it was going to be. I got a single speed cruiser thinking it would be easier not having to deal with gears. I also got a 24" because i could put my feet flat on the ground while sitting on the seat. The 26" seemed too big. Well, I was mistaken. So I returned it & got a 7 speed 26". Aside from the first bike being more difficult than I thought I was all scrunched up because it was too small to ride. I got a bike with gears because the men in my family pointed out to me that it would actually be easier because I could use 1 st gear in the yard & the small incline at the end of my road & use a harder gear the rest of the time. (Men can be useful at times) so when I got home I tried out the bike in 1st gear & oh my god, what a difference that made. I rode to the end of my road & back, about 300 ft. I was so proud & TIRED! Thankfully I live on a dead end road so no traffic during the afternoon. I wanted to keep going but my better sense kicked in. The next day I rode about 400 ft & I got a basket for my dog to give him a ride. He loves it & he settles down & just watches everything. Let me tell ya, adding a 15lb dog to the handle bars makes it a whole body work out! On Friday I went just a little too far & almost had to call someone to come get me but I made it back. I didn't ride the next day just to be safe. 
But what an accomplishment! A cidp'er on a bike! With a dog, no less! 
"Dorothy & Toto"
Since this picture was taken we have added a rounded bar to the axle just inside the forks that goes up underneath the basket to make it more secure & now I'm a little more confident that the dog isn't going to fall. I ride about a 1/2 mile a day now. Except when its raining (Florida rainy season just started) and the last 2 days because of my IVIG infusion I've just been too tired. But I'll have more energy and can resume on Friday, Thursday I'm going to the Y to go swimming with a friend and I don't want to over do it. Its funny, every evening as it starts to cool down my dog, piggy, comes bugging me to go out & ride. He's addicted, its almost as bad as his peanut butter addiction! But if I don't go out and at least push him around the yard, he pouts! He's going to be worse than a drill sargent, but it's good motivation.
This weekend is another friend's birthday & we're going to dave & busters (chucky cheese for adults) and mini golf. First time for that since I got sick too, can't wait!Now just to decide what to do for my 8 year anniversary of CIDP. I celebrate it now. It still sucks but any reason to hang with the girls is a good reason. Just because I got this crummy disease doesn't mean my life ended, it just changed and I learned how to adapt. As long as I feel good I'm going to live it cause you don't know what tomorrow will bring.
Till next time, stay safe & well and always believe in the magic of life.

Sunday, March 3, 2013

Life after rehab

It's been a while since I posted anything about my "history" I left off when I got out of rehab. I really don't like talking about how horrifying the experience was there. Again, not the nursing staff or the regular Doctors or the therapists, I mean that psychologist. Still to this day the mere hint of that man sets my family off on a tirade worthy of Henry the VIII. So now that I am feeling exceptionally stable let me dig back into some of the hard times. Yeah, I guess I'm a masochist!

So let me begin with my exit from rehab. After the social worker decided I needed to go to a nursing home (and had made arrangements for me to be taken the next day) I was freaked out that everyone was giving up on me and sending me off to die. Yes, I know that was a bit over the top, but like I said, Gramma died a year earlier in a nursing home because no one was capable of taking care of her. She could still walk, with assistance, but I couldn't. She could feed herself, I was finally able to feed myself. She needed help with personal needs so did I. She was a tiny little thing by that time, I was not. So yeah, I didn't expect that my family could take care of me in the condition I was in. But mom assured me that they (mom & dad) would take care of me.

The next day I was expecting a trip to the nursing home but when mom got there she said that I was coming home with her. That my dad, bless his heart, was home building a ramp to get me and my wheelchair into the house. That they were giving me their room because the doorway was bigger and my wheelchair could go through it, my old room the doorway was too small and the room just wasn't big enough, plus their room had a bathroom. I was so happy, I swear that did me more good than anything else. She told my nurse that she wanted to talk to the social worker.

The social worker wasn't happy, one, she had already made arrangements for me, two, psycho psychologist said I was in danger around my father and three, my house hadn't been inspected. Well, it must have been THE LOOK from my mom because she suddenly started back tracking and started on paperwork for me to be released to the care of my family because I was HOME in about 6 hours. It sucked having to move back to mom & dads at 30 but hey, I was where I needed to be. I continued OT & PT as an outpatient until I started another relapse in about 3 weeks from my release, more about that at another time.

Until next time, keep believing in the magic of life & stay well.


Wednesday, January 16, 2013

Another year...OLDER!

Hi Peeps,
I hope y'all have been feeling as well as I have lately. I had ANOTHER birthday, dang things keep making me older. I'm happy they keep coming, but dang, do they have to increase our age? Well, NO they don't. I don't feel any older than I did last year at this time & I don't look any older, so I'm not. I actually feel SO much better than I did last year at this time. Last year at this time I was beginning another exacerbation (I'm getting better at spelling that, at least now I'm close enough to get it in spell check!). Last year my hands were constantly on fire & I was losing strength on a daily basis. This year my hands aren't burning unless I work them a little too much & my strength is the best it has been in 7 & 1/2 years! I can't pick up a 50lb sack of flour but I can pick up a 25lb bag of potting soil! Yes, it's January & I said potting soil. I live in Florida remember? It's 82 degrees out. Now, I can't carry the potting soil far but hey, I CAN pick it up! My balance is better, not awesomely perfect but it is as good as I get so I'm happy & so is my Doctor. My endurance is better, but not as good as I thought it was as was evident when I tried to wash my car yesterday.

Silly me, I thought "I feel great, I had my IVIG last week I have the energy to wash my grungy car. So I pull it around the back by the shed & grab the hose, a bucket, soap & a sponge and got to work. I sprayed the car down & start washing. I get not quite half way through the driver's side & said "Damn, this is harder than I thought." but I kept going. I got the driver's side done & moved on to the roof. I got half way done & lost my balance but was able to hang on till the blonde one was able to get over to the other side of the car to help me so I could step out of the door jam and back onto the ground. So after that I just stood & watched her finish & rinsed when she was done. I was so tired I had to take a nap! I'll vacuum it next week after my muscles recover! But my car is so clean I didn't recognize it in the parking lot of the restaurant where we had lunch today! Lol, silly me. Next year when I wash it again, I'll take it to the car wash & let the machine do it for me.

Back to the potting soil. Last week we started my herb garden. I haven't had a good herb garden in a few years, just didn't feel good enough to do it so this year it's gonna be great. I got boxwood basil, oregano, chives, pineapple sage (it has pretty red blossoms) and an orange mint. If you like mint in your tea or water I highly recommend this variety of mint if you can find it. It has a beautiful light orange scent & flavor to it. Also if you like basil I recommend the boxwood variety. it looks like a boxwood hedge, but its stems aren't as "woody" as traditional sweet basil is and the leaves are tiny, no need to chop them to use them. I still need to get thyme, parsley (i like flat leaf) & cilantro to complete my herb garden. I may find something else to add but that's a good start. I wish I could keep dill alive but I just keep killing it. I think it just gets too hot in Florida for it. I can't wait to make some herb jelly & flavored oils & vinegars again. I love to cook with fresh herbs. I want to plant a pepper plant & maybe a tomato plant and I saw some seeds for some colorful Swiss chard that I want to try too.

What does gardening have to do with CIDP? Well, it is something you can easily do with CIDP. I plant everything in pots, it makes it so much easier. It takes less time & water to water plants in pots than when in the ground. If you get different size pots you can make a nice arrangement close to your water source so you don't have to drag your water hose the entire 50 feet it reaches, then water, then drag the hose back & roll it up. That in its self will tire you out. This time of year I can water every other day. As we get into March everything needs water more often but then June hits & our rainy season starts & I can take a break till mid August.

Living with CIDP is about finding balance. You do what you can when you can & try not to stress out over what you aren't currently able to do. My Doctor told me. "There is no 'I can't' there is only 'I am CURRENTLY not able to'". I thought that was a great way of thinking of it.

Speaking of Dr. C. I saw her the day after Christmas & she was so happy with my progress. She doesn't want to change a thing. So I am staying on IVIG for 3 days every 3 weeks. Total of 160gms over the three days.

Till next time, keep safe.

Always believe in the magic of life.