Update on me, Big hello to PaLady

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bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 4/10/2010 1:24 AM (GMT -7)   
Hi Everyone:

PaLady: A special hello to you, and thank you for asking about me. How are you doing?

The last time I posted about myself, I think I had just found a new PM doctor that to manage my intrathecal pump, and he had switched me from Dilaudid to Sufentanil and he added Clonidine to the mix as well. He started me off on a very low dose compared to the amount of Dilaudid I was on, and I went through awful withdrawals for about 3 weeks.

My doctor has given me two increases so far. I wish so much that I could say that I notice a significant change, but I can't yet. I am hopeful that we are on the right track - I keep telling myself that we are just not "there" yet. So, for now, my pain level remains at a 8/9 consistently. I'm trying really hard to remain optimistic, but it is not easy. I have an appt. with him next week to discuss what to do next.

He wants me to get a device that goes along with the intrathecal pump called a PTM (Personal Therapy Manager), which I had been begging the PM that was managing my pump for for over two years. It would allow me to give myself bolus's of medication as needed throughout the day, but come to find out, it needed to be ordered at the same that the doctor ordered the actual intrathecal pump that is implanted in my stomach. If I order it now, it costs over $1,000 which I would have to pay up front, and then I would have to submit it to my insurance. I called my insurance company to see what I would get back, and there is a $375 deductible and then my insurance company only pays 50% of what they feel is reasonable and customary. If I wait until the battery dies on the pump I have now (about a year), and the doctor orders it when he orders the new pump they will implant, it is covered 100%. It's so not fair, I didn't even know this option existed until 3 years after my pump was put in.

My oldest son, who is away at college, offered to pay for it and I could pay him back over time, and as much as I so very much appreciate his offer, I can't bring myself to borrow it from him. He has been working full time and going to school full time for the last 3 years, and despite his exhausting schedule, he has made Dean's List consistently. I am so incredibly proud of him.

He's working towards a liberal arts degree in Health Science. He knows he wants to work in the health field, but he has not decided exactly what avenue yet. He's taking a class this semester that explores the different possibilities he will have open to him with his degree. They actually meet at the local hospital and speak to the people that are working at these jobs, which is wonderful, but every week, he changes his mind on what he wants to do, lol.

Best Wishes and Hugs to All,

Lorie

flower123
Veteran Member


Date Joined Apr 2009
Total Posts : 856
   Posted 4/10/2010 1:51 AM (GMT -7)   
Hi Bluejet. I'm sorry that your pain isn't under control. I went through about 4 or 5 years of that, with pain levels so very high. It was extremely difficult, to say the least. It sounds like your doctor is working with you which is always important for us.

It's great that your son is going to take a class that will guide him in the right direction in regards to career opportunities. I was just telling a student of mine yesterday that it would be great for him to observe people doing a job that he wants to do so that he can see if he is truly interested. I find that many people go to college and then find out that their perception of their prospective career is much different than reality! Your son is really on the right track. It's wonderful!

Flower

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/10/2010 2:08 AM (GMT -7)   
Lorie,
I can barely keep my eyes open so I'll just say I'm glad you posted and I'll write more tomorrow. I don't know a lot about the pumps, but I know I always read how Straydog's new pump doc has changed her life for the better. It's lousy you can't get that Personal Therapy Manager (yet a new device for me to learn about!). I won't even begin to tell you about my insurance issues tonight. And finances, which of course add stress, which of course make all the health stuff worse. Ah, too depressing. The fact I'm up at 5am after having taken a "nap" which lasted until around 3am should tell you how screwed up my sleep schedule is.

flower - I didn't know you were a teacher. I taught college for 12 years in one of my previous lifetimes. I think there are a few teachers or former teachers on the forum but don't ask me to remember them now.

More late, Lorie, and it's good to see you (the 2 lorie's/laurie are back! LOL - a joke in my wacky head only),

PaLady

flower123
Veteran Member


Date Joined Apr 2009
Total Posts : 856
   Posted 4/10/2010 3:32 AM (GMT -7)   
PALady, I haven't written about my career because I get so worried about security and the stigma that comes with being a pain patient. I'm relatively new to posting, and I worry about giving too much information.

Bluejet...not trying to hijack thread, just wanted to say that...

:)

Flower

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 4/10/2010 4:46 AM (GMT -7)   
Flower just so you know we understand what you are saying about the security issues, lol.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 4/10/2010 6:00 AM (GMT -7)   
Hello Blujet2! It has been quite a while since I have seen a post on you. I'm sorry to hear that your pain levels are still high. We are glad, however to know that they are working on bringing it down though.

Lets hope you will be able to get this new device that may help you.

Take care, and please do update us on your progress. I for one have missed your post, and did appreciate your support for me when I first came here to HW.

SE
DDD (Degenerative Disk Disease) S1-L4-L5, Heart Attack 2002, Angioplasty to clear blocked Artery and to implant Stent. Six Epidurals, Disocgram, Melanoma Cancer 07, Lumbar Fusion March of 2010, Four cortisone injections Tendinitis in Elbow.


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 4/10/2010 5:29 PM (GMT -7)   
Lorie,

I'm glad to see you posted. I was wondering how you were doing as well. I don't know very much about pain pumps, but this PTM sounds pretty neat. Would you need to have surgery again to have the new system incorporated into your old pump? It would be fantastic if it ended up helping you. I live at a constant 7/8, so I know how hard that is & how nice it would be to get some relief. I hope you can find some way to work this out.

hugs,
Skeye

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 4/10/2010 7:50 PM (GMT -7)   
Hello Flower123 & PaLady,

Thank you for your replies. All 3 of us have something in common (besides CP, lol) - I also was a teacher for 12 1/2 years. I taught at our local community college, vocational/technical school, as well as teaching inmates at our local county jail. I loved teaching so much and miss it terribly. PaLady: I can fully empathize with your sleep issues. I certainly understand how sleep deprivation is used as a form of torture. Stress & lack of sleep sure does add to our pain level as well as making it more difficult to cope with the pain.

Susie, SE, & Skeye:

Thank you for your replies as well. Being at a constant 8/9 for so long has definitely taken its toll on me, and support from people who truly understand what it is like to have this level of pain for so long really means a lot to me. It will not require additional surgery to incorporate the PTM, it is a feature that is built in to the kind of pump I have. The doctor that was managing my pump didn't like this feature, so he never told me it was an option.

Lorie

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 4/10/2010 10:14 PM (GMT -7)   
 
 
 
     Dear Lorie,
 
      Good evening *hugg* It is good to hear from you. I am sorry that your pain level is still a constant 8/9 thou. It makes the days long and night even longer. I do hope this new doctor can get you down to a lower level.
 
      I am really sorry to hear this feature was not used and not put in place during the implantation. That has got to be frustraiting to no end! Knowing that he had to of gone out of his way to leave it out... gosh. I have colorful words..
 
      Your son! Oh you must be ever so proud! He is working very hard and it shows. I hope he can make a decision about which avenue he wants to take. I think it is a testiment to what a great mother he has :-)
 
      I wont chatt away endlessly. You are always in our hearts.
 
*hugg*
   dani

 

 

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood

 

 


bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 4/10/2010 11:17 PM (GMT -7)   
Hi Dani:

It is so good to hear from you, I have missed you a great deal, and think about you often! How are you doing? How is your family?

Are you still making jewelry? Have you found avenues in which to sell it? If you have any recent pictures of your work, I would love to see them!

I am trying to remain cautiously optimistic that this new doctor will be able to get my pain levels down to a more acceptable level, but it is a struggle. I believe this PTM device could be very helpful to that end, but it looks like I will have to wait the 12 months until my existing pump battery dies and then it will be covered 100%.

Thank you for comments about my son. When he was 12 years old, he told me he wanted to become a physical therapist so that he could "get mommy better". That is what he originally planned on majoring in, but at our local community college, as well as the surrounding counties community colleges, anything in the medical field has a 4 - 6 year waiting list to get accepted into those programs. That is why he went for this liberal arts degree. He's thinking about continuing on to get his Masters Degree and at first he was thinking about going into hospital administration, but now he's thinking about becoming a nurse practitioner or a physician's assistant. Whatever he does, he will be great at it.

I really appreciated your kind words about my being a good mom. My physical limitations make it impossible to be the kind of Mom I was before my accident, or be the kind of Mom I would like to be today, and that really gets to me. Accepting my limitations has always been the hardest part of living with CP for me. Anyway, thank you again my friend.

Lorie

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/11/2010 1:25 AM (GMT -7)   
Hi, Lorie,
Well, here I am at 4am hoping my latest dose of meds will kick in soon. If I start tripping over my words it's because they kicked in but I haven't yet realized it. LOL

I left teaching voluntarily back in 1992, but I had always hoped to go back into the educational arena for what I considered the last 'third" of my career. Ah, that old, nagging issue for all of us of having to accept our lives as they are and not as we had envisioned them. And then re-envisioning something that at least has meaning. Tough nut to crack.

Wow - the waiting list for your local community colleges is really long. I don't think they're that long around here, but then I've not poked my head into that arena in awhile except from a distance. In the long run, though, this may end up being a better route for your son, especially if he goes for some advance degree/credential. That will give him a little more choice and independence. You'll have to let us know what he selects - or maybe what he starts to eliminate! Sometimes that's the way the process goes, as you well know from having worked with your share of students.

I don't know how you keep going with a daily 8/9 pain level. I don't know how anyone here does. I guess I did for a couple of years when no one would give me anything, then finally my PCP caved to 2 vicodin/day, one of which I used to sleep at night. That was a few years ago. Since my surgery I've been lucky that my neurosurgeon has hung in there with me prescribing the percocet, but I have to switch to a PM and am waiting for that office to get back to me to schedule an appointment. Will have to travel about 3 hrs. each way to get there, but I'll probably stay with my cousin for a day or two. I'm glad I have someplace to stay because I can no longer drive that 6 hrs. myself in a day. I used to do it in the blink of an eye. I love driving distances, but that's not on the agenda anymore.

Ok, even I can see I'm rambling. I did want to add for Flower I absolutely understand the privacy thing. I actually share fairly little here about my background, except now and then. And I'm not working anymore. So I can understand your caution and I certainly would never want you to share more than you're comfortable with. I've seen too many news stories now about how employers and others google people and even check social networking sites.

I'm going to try to get some sleep!

Hope you all are sound asleep in dreamland as I'm writing this!

PaLady

flower123
Veteran Member


Date Joined Apr 2009
Total Posts : 856
   Posted 4/11/2010 2:46 AM (GMT -7)   
Thank you for your understanding about my reluctance to post about my career.

Yes, it is so difficult to deal with pain levels of an 8 or a 9 each day. PALady, I'm happy that you'll get to see a PM doctor soon.

Bluejet-I hope that you get relief soon! I had such a hard time doing anything when I was in that much pain. I hope that your doctor can help you through this time. I may have missed something, but is there any possible way your doctor could give you a strong oral medication until you can get your boluses (sp.)?

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 4/11/2010 11:28 PM (GMT -7)   
  
 
 
    Dear Lori,
 
     The family is good. My girls 3rd quarter assessments went well and both are ready to transition to the next grade level next fall. Though this is good news... I am a bit worried, because I know that when they are bored ...mischief soon follows... Hopefully their teachers can keep them engaged and busy til the end of the year.
 
      Yes! My jewelry is coming along nicely. I am very pleased. I was able to get some tools upgraded and that helped tremendously. I have also been keeping a "Jewelry journal" with my sketches and pictures of what the final pieces turned out to be. I just don't have digital pictures yet. I blame my husband and his ever increasing "to do" list!
 
      I did run into one small problem..well, monitary problem really.. After mailing out so many sets to family members for Christmas gifts.. the calls started coming in for jewelry sets for their other family members and friends. Which at first was wonderful! And made me feel just ten feet tall! But, at this point I better start figuring out how much to charge for a set because I am loosing a lot of money. smhair 
 
     I hate knowing you have to wait for the PMT device. I wish there were some way you could get it put in early and send the bill to your old doctor. What a mess he has caused! Are you sure your battery wont run out until the end of the year? 12 months just seems like such a long to endure through the kind of excruiciating pain you deal with daily.
 
      Oh my goodness you son is a sweet heart! No doubt about it. Oh you must be so proud! To watch him follow his dreams must feel so good.  
 
     I think, for me, the hardest thing about being a parent is letting them make their own mistakes. A good example : I cant tell you how many times I have prevented my little bumblebees from playing "Ice skating socks" in the kitchen for fear of bonked heads and ouchies. In the end they always end up doing what ever it was I was trying to "protect" them from and getting hurt in the process *sigh* I hope I can learn to calm down about it eventually.
 
    Okay, I see my tendancy to chatt away with you hasn’t changed a bit!
 
*warm huggs*
   dani

 

 

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood

 

 

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