Straydog (Susie) - Thank you...

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Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 10/25/2008 10:53 AM (GMT -7)   
Susie,  I just want to thank you for posting about my pain pump situation.  Hearing your experiences, especially since you have the pump, really helped me.  I'm sorry it's taken a few days to reply to you; I tried to post the other day, hit the wrong button and wiped out what I wrote.  eyes  
 
I know you said you don't post as much as you used to...so I REALLY you taking the time to write down all of your experiences.  I know it's hard to sit at the computer, when dealing with pain issues.  Soooo, I really thank you for doing that! -Tina
 
 
 

 

Diagnosed with: POTS/dysautonomia; Fibromyalgia; Severe Hypertension; Hypothyroidism; Adrenal Gland Disorder; Chronic Pain - severe carpal tunnel syndrome, migraines, severe back problems, widespread muscle/joint pain....as well as depression/anxiety.

 

Current Meds: 480mg MS Contin, 90mg MSIR, Soma, Effexor and MANY other meds (heart, thyroid, etc)

Past Meds: EVERYTHING.  Fentanyl patches, Actiq (which caused $$$ in dental work), Fentora, Oxycontin, Oxycodone, Kadian, Avinza, Dilaudid and on the list goes.

 

Waiting On: Intrathecal Drug Pump Implantation (Dilaudid/Baclofen combo)

 


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13481
   Posted 10/25/2008 2:17 PM (GMT -7)   
Tina, please ask any questions you would like and I will do my best to answer. I do pop in & out of here alot during different times a day. I do limit sitting here at the puter alot. I get terribly stiff when I sit and the blood pools in my feet really bad which results in a lot of swelling issues, so I do much better just stopping by.
 
I have been really overdoing it lately which is really easy to do. Our weather has cooled off alot which means more outside time for me. I figure I have all winter to couped up,lol. I have a large silver leaf maple tree behind me in a neighbors yard. Well, its beginnig to lose its leaves, so I go out every morning and rake leaves. I have a long handled kiddie rake and a long handled dustpan that I use. I do not have a cover over my pool so I keep the leaves cleaned up in order to keep them out of the pool making a bigger mess. I do alot of stopping & resting but I manage to get the job done and thats what counts. I figure its the best exercise I can get,lol. If it weren't for the pump, I can assure you I would not be doing this. This past spring I managed to plant flowers in 3 small beds, that was a big accomplishment for me and I cannot tell you how good it made me feel to have done that.
 
Like I said I have had my pump since 05 and its really made a great improvement in my life. Just make sure your dr is one that will be liberal with increases until they get you titrated to where you need to be. Also make sure he will make BT pain meds availble to help you on out during this time. I have heard that some drs do not do this, mine does. But, I do much better with muscles relaxers than BT Dilaudid. Get the muscle spasms down and my pain level drops as it should. My pain dr shakes his head and laughs at me, cause he will ask if I need pain medication and I tell him no, just make sure I have plenty of Zannaflex on hand.  He said on my last visit he wants me to work up to 36 mg of Zannaflex a day. I have been very fortunate that this is an effective medication for me, only bad thing I have found with it is drys my mouth out. I have a very high pain tolerance so I learned years ago to just deal with the pain and I still do in many ways.
 
Keep us posted on how you are coming along. Susie
 
 
 
 
 


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 10/26/2008 9:54 AM (GMT -7)   
Susie,
I woke up this AM and I couldn't walk. All I could do was kind of do the
two step sidle. It took me a l---o---n---g time to get my coffee going and
find the remote.
I have taken my allowed 4 Methdone and 2 Neurontin. I'm still having
a lot of trouble. I couldn't decide whether to take Zanaflex or Xanax to
get me up and going.
The pain is in my lower back -- like down there where the Coccyx lies.
Could that pain be a "spasm" I can NEVER understand what people mean
when they speak of spasms.
What I did do is take the Xanax, and I'm a bit more relaxed. What might
a Zanaflex do?
I do NOT want to go to the doctor because all he could do is send me for
another MRI and all an MRI could mean is surgery. I won't have surgery
until I really can't walk or there's a problem getting to the bathroom.
Pamela Limpalong
MEDICAL CONDITIONS

Osteoarthritis all levels of spine right down to Coccyx,Spondilytis,Myofascial Pain
Fromyalgia,Bulging Discs,Spinal Stenosis,Scoliosis,Osteopenia,Chronic Constipation
Carpel Tunel Syndrome,.Prolapsed Bowel and Bladder, Attention Deficity Disorder,
Depression & Anxiety

Methadone for Pain, Xanax for Anxiety,


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13481
   Posted 10/26/2008 11:00 AM (GMT -7)   
Hey girl, I am trying to think of a good way to to explain a muscle spasms. Pam, one thing I will tell you, they will cause you some of the most miserable pain you can imagine. Some people feel like they are knotted up, when I was having alot of neck involvement, it felt like I had tennis balls under my shoulder blades that hurt 24/7, I would bet a dollar to a donut that you suffer with them. Why, do I say that, you are a very tense type person mainly and an anxious type as well, perfect for causing spasms. When we tense up so do our muscles, if they hurt, they cannot relax on their own. Its my understanding the Xanax is for your anxiety right? You might start trying your muscle relaxer, but I would not take both since they are both downers. I cannot take Xanax, its like giving me speed, it does the total opposite for me. If you saw this house you would say it sounds like she needs a Xanax,lol.You know my dr wants me to work up to 36mg a day, which is the max. I also have to reserve one for bedtime to help me relax. Anyone with chronic pain should be on a musle relaxer simply because we tense up. Hugs, Susie


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 11/5/2008 8:02 PM (GMT -7)   
Susie ...
Thank you. Well, when I have a muscle spasm I grow an egg in the muscles of my left shoulder ... and some little ones
on my right shoulder. All this time ... 6 1/2 years and I didn't know what it was. I kind of thought it was Cancer.

Well, Susie Q ... Thank you again. I will try the Zanaflex.

I'm glad I was looking for the woman who sent me the delicious bean recipe. If I hadn't been looking I would never have
found this and the mystery could have gone on for years. My doctor has NO time for me. He's passive agressive to the
max because I don't choose a pain pump.
Pamela Neckegg

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13481
   Posted 11/8/2008 5:39 AM (GMT -7)   
Hey Gal, I do hope you tried the Zanaflex for those eggs. Let me tell ya, they can sure deal a person a ton of grief and pain left alone. I don't think one pill will do the trick, probably needs 4-5 days straight to get those things to relax. Amino acids build up in those knots thats why they get sore. I am having them terrible back pain because of having to work on scooping the leaves out of my pool. I have no choice but to do it. Its a killer trust me. I am taking my Zanaflex before I even start working on the pool and it helps. Hugs, Susie


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13481
   Posted 11/8/2008 6:49 AM (GMT -7)   

Hi Tina,

I too tried joing Pumpsters and never heard back from them,lol. I told Pamela I guess they have all the members they want.

I do not know how you manage taking care of 6 kids even with help and getting by. That is a hard job for a healthy person,lol. I can have my 3 yr old grandson for an entire day and be totally exhausted when he goes home. But, I do admit to being his playmate the entire time he is here. We are always doing something and being still is not one of them,lol. He is still when he sleeps. Don't get me wrong, I cherish every minute with that little guy, he is what keeps me going and he is my reason to get up every day. When I have him, I am so focused on him I totaly wipe everything else out in my mind. I think thats why he & I have such a good time together. The minute he walks in this house its "play with me Granny", and I do. I feel quite certain those guys of yours is what keep you going too. They need their Mom no matter what kind of shape she is in.

I can assure you that I would be unable to do much of anything except lay in the bed if it weren't for the pump. I did for 18 months. I spent more time in bed than out. Thats no good either because I have always been a very, very active person. My daughter always said I was hyperactive and there was medication for people like me,lol.

Probably some of the hardest things to deal with when you are first hit with CP is learning not let it beat you, don't dwell on it, get counseling if necessary which I did, learn to work with what you have to work with, realize your life isn't over with, advocate for proper care and learn to work with your limitations. I do not view myself as being disabled, rather I am limited in some areas. I really think if people don't a grip on it early the mental side of it can be worse than the physical side.

I guess I missed the part about your cardiologist supporting the pump thing. I am currently trying two new BP meds because of the BP being out of control. I think I had been on my other meds too long and they stopped working and pain as you know will cause it to go up. This past year its really been way too high and the cardio dr has been on my case. I finally told my PCP that I wanted her to manage my BP problems because after this last round of yearly cardio testing I am not happy with him at all. In fact, when I need all my test done next year it will be with a new cardiologist. He put me on medication that when I looked it up on the net it stated if you take these two medications do not take this medication. He was vey much aware I was on these meds and gave me a months worth of samples to try. My poor PCP was horrified. She has had back surgery and she really has some rough days and she knows how pain can have an effect on the BP. Needless to say, my confidence in him went right down the tubes.lol.

I hope you can get yourself feeling better. We have the holidays right around the corner and you are need to feel better to handle them. I think I have a love/hate relationship with the holidays. It gets so tiring and hectic at times. I need to get off here and take the boys out. Hugs, Susie 

 

 



Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 11/9/2008 2:17 AM (GMT -7)   
Hi Susie,
 
I can relate to many of the things you wrote.  Yep, the emotional aspect of chronic illness almost defeated me; it sort of happened without me even realizing it.  I've been ill for going on five years.  From about mid-06 to the very beginning of this year, I "gave up" without realizing that's what I was doing.  I couldn't accept that I wasn't the same person anymore.  Who I was changed - EVERY part of me; before, I was a high-functioning, active (maybe even hyperactive, like you said you were...) person. It seemed like it almost happened overnight - but I went from being so ill
 
I basically got into bed for the bulk of two years.  It was a very dark period of life.  I did everything/thought everything that you said in your post that it's important NOT to do (and I agree with you 200%).  I did think life was over (and it basically was...the life that I had...).  I basically had given up without even realizing it.  Then, without getting into too many details, I had a couple of life events show me how I had to get a grip on my illness and had to start living again. 
 
I began w/ very small goals - just waking up in the AM and putting my feet on the floor.  Changing from PJ's to comfortable clothes (I think I had been in pajamas 95% during the two years I mentioned).  Just small goals.  I had literally work to retrain my brain to be happy for the "little" accomplishments. 

I'm not any better in terms of my illness and pain.  In some ways, I'm even worse.  BUT, I am soooo much better in the way I approach things now.  You are sooo right - you HAVE to get a grip on the mental side.  You were exactly re: my boys - they are what gets me out of bed and keep me going.  For awhile, I thought I didn't have much to give them anymore, once I got sick.  They didn't care!  They just need a mom - sick, well, hurting, not hurting, just a mom.  So, those six faces are what drive me each day - just how your little grandson does for you.  Is it exhausting?  Oh my goodness...ummm, yeah.  How do we make it work?  I don't even really know sometimes confused The boys do really help me, though, especially the older two who are pushing 13 and 14.  And I do have my mom and MIL in the area (thank goodness).
 
HUGS, Miss Susie tongue   More later - Tina
 
 
 
 

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 11/9/2008 2:55 AM (GMT -7)   
Susie - I wanted to say one more thing re: my heart doc; some of my major symptoms/health problems involve my heart and I have a good cardiologist.  He really supports me getting the pump, hoping it will bring my BP down.  I've been on lots of heart meds before getting to the ones I'm on now (Midodrine and Metroprolol).  While they have relieved some of my symptoms (brought down my heart rate, etc), my BP still needs help.  Yeah, it sounds like you need a new cardio doc.  When you are catching mistakes your doc has made, like prescribing two incompatible drugs, that's a problem. 
 
Anyway, I'm trying to work up the confidence to venture into thinking about the pump again.  If you ever get approved on the yahoo group (Pumpsters, let me know).  Thanks so much, Susie - for providing me w/ your experiences re: the pump.  It has helped me so much.
 
Time for me to put my insomniac self to bed  yeah  
--Tina                    
 

 

Diagnosed with: POTS/dysautonomia; Fibromyalgia; Severe Hypertension; Hypothyroidism; Adrenal Gland Disorder; Chronic Pain - severe carpal tunnel syndrome, migraines, severe back problems, widespread muscle/joint pain....as well as depression/anxiety.

 

Current Meds: 480mg MS Contin, 90mg MSIR, Soma, Effexor and MANY other meds (heart, thyroid, etc)

Past Meds: EVERYTHING.  Fentanyl patches, Actiq (which caused $$$ in dental work), Fentora, Oxycontin, Oxycodone, Kadian, Avinza, Dilaudid and on the list goes.

 

Waiting On: Intrathecal Drug Pump Implantation (Dilaudid/Baclofen combo)

 


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13481
   Posted 11/10/2008 7:55 AM (GMT -7)   
Tina. so enjoyed reading your post. I think I read somewhere you were considering the pump implant after the first of the year. I think thats a great idea. Start the new year off with a new life beginning for you and the family. I do not want to appear pushy on the pump by no means. Its just that I know after a person has tried every avenue out there to no avail and things are not getting any better its time for a change.
 
I have crohns disease and let me tell you its a roller coaster ride having severe crohns. One thing its taught me is to grasp hold of any kind of possible avenue to attempt remission. Some can have crohns and have one mild flare up a yr and be done with, or have some problems but nothing severe enough to warrant doing anything about which is not the correct approach. Crohns is a silent disease in terms of while you may think you are doing ok, the crohns is destroying yours bowels or any other place you may have it. I was dx'd after an emergency resection while on vacation in Mexico. I had developed a complete blockage and abscess and wanted to die while curled in that ball of pain. Onece they located a surgeon he thought I had appendicitis so he took my appendix out only to find them fine. He had the sense to to go further, he opened me up lower and found a mess. My gi said the surgeon saved my life because if the bowel had perforated I would have died. All that poison would have leaked out and destroyed everything, so God and my angels were taking care of me. No one has lived until they have an emergency surgery in Mexico,lol. We were 90 miles out of Cancun in a villa we had rented and I was taken by ambulance to Cancun. No they don't speak English, the hospital was an old 3 story hotel converted into a hospital. No nice American speaking real hospital in Cancun. My IV pole was missing wheels, so rusty they had to carry it. Still used cotton balls soaked in alcohol, no disposable anything, no call button for a nurse, very very primitive. But, I had the best care ever. I never one time had to ask for anything including pain medication. They kept me comfortable, clean, oh I had full baths in the bed including hair washing. The nurses looked all of 18, very very proud of their vocation and took it very serious. The drs were the same way. My surgeon & admitting dr came 2 times a day to see me. American drs & nurses should have to do one yr stints in Mexico before getting their degrees. Those people could teach them some lessons in many areas. Those people took such pride in their work. The 1st 3 days I was the only patient there,lol. Then an elderly came in.
 
I went into complete denial after the crohns surgery until I cratered 18 months later and it was not pretty lets say. At the same time the chronic pain sneaked back in, in the middle of all of this. I just became too overwhelmed with all of it. Most of the crohns medication is steroids and which I cannot take, so I had to find a gi who was not afraid to take me on as a patient, I went thru 3 before the one I have now. He is a blessing. I found out very quickly even living in the Dallas/Ft. Worth area where there are more drs available than the law ought allow.lol. THe quote top gi's are not uptodate on the new meds available for crohns because they are lazy. They do not want to take the risk of dealing with these new drugs that have severe side effects from death to cancer.. My dr stays up on it all. I have no immune system because of the crohns drugs but at least I am not pooping 25 times a day and living in my bathroom, or having to wear diapers as before. Sometimes I do but nothing like before. I had developed a nasty fistula this year that came out and opened up on my old hysterectomy scar. Oh, I had no clue except I kept smelling this foul odor and no shower was taking it away,lol. I fnally got to investigaing and there was this small hole with this crap draining and the whole was getting bigger. So, my gi did his thing. I had to start back on Remicade infusions every 4 weeks. Remicade is one of the newer drugs for crohns. Many people have been steroid dependant and were actually able to get off the steroids totaly for the first time ever. But, Remicade comes with big bad potential side effects including death & cancer. I can't look at medication in those terms I have to look at what may be my shot at feeling better and getting into remission. If I can't get there at least have some control of it. You would be amazed at the people that refuse the crohns meds because of the possible side effects. Steroids are the very worst of all. But yet they will eat those pills and destroy their bones and still besick. I guess this is why I am proactive about things that works. I am sorry, I know you didn't want to read this mess, but I am trying to explain why I am always willing to talk about something that may help another person. To me dealing with crohns is no different than chronic pain, you have to be open minded when it comes to medications or even now devices, lol. I can't worry about what may happen next week or next month cause I could get run over by a car tomorrow. I live my life around that motto as well.
 
I am going to be trying a new crohns drug just approved by the FDA called Cimzia. Hopefully I will start it this month. Its an injectible drug done at the drs office. I read about the trials and it sounds so promising. I try not to get too excited in the event I cannot tolerate it, like so many meds. We decided to try it because Remicade infusions entail a trip to the hospital sitting in an easy chair 4 hrs while the drug is infusing. Thanks goodness I have a port in my chest because it destroyed what veins I had left yrs ago. In 04 I had to have the port put in. I am now starting to get some side effects from the Remicade which put me in bed for 3-4 days including running a fever. Cimzia has the horrible potential side effects but again, I don't let that make my choice. I look at feeling better, being able to eat solid foods, not liquids, be able eat in a restaurant and not worry about how far it is from the house and back. My surgery left me w/chronic diarhea and my gi had hoped the pain meds would slow it down-no it didn't. He even sent me to a gi in Dallas that wrote the book on diarhea and he had no options for me,lol. Now thats bad, lol.
 
Hope you have a lpd. My belly is rumbling so I am off for now. Lots of hugs coming your way. Susie


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13481
   Posted 11/10/2008 9:05 AM (GMT -7)   
about pumpsters. I got an email over the weekend that they are still working on verifying who I say I am!!!! Because I used my cell # and not home # they have had a difficult time proving I exist I guess. With that being said I am not sure I need to be a part of that group. I am not joking about this. They actually run information on a person trying to join the group. Geez, I am not applying for ajob or credit card with them whats up with all this privcy of theirs I wonder. This is a true story, no joking. It sounds like a whole lot of paranoia going on in that forum and that I do not need. I wonder why they think a person would lie about having a pump. From what I get this forum is for eople with pump's only-so I don't know. Will let you know if I hear anything further. Susie


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 11/10/2008 11:47 AM (GMT -7)   
Susie,

I didn't know what Crhons is. Now I do know some of the problems. It sounds
like a difficult illness. Everything is made even more troublesome when Chronic
Pain rides along. I have IBS from time to time. I thought it was like Crhons. It
isn't.

Surgery in Mexico. OMG! That must have been scary. You know, I can almost
see those sweet nurses doing their job and being proud to help people in this way.
My mom was in a convalescent hospital for twenty years and I got to know
nurses. The nurses aids are paid the least but from what I've seen they take such
good care of their patients. Many of them are not from the US. As they move
up the ladder of capability, they seem to lose their hearts for patient care.

Pumpsters sounds verrrrrrrrrrrrrrrrry interesting. I will try to sign up next time I
come on. I'm curious.

Pamela

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 11/10/2008 12:27 PM (GMT -7)   
I don't know anything about this issue but this pumpsters site sounds really "curious" to me, too! With all the issues around identity theft, are you all sure they're legit? I don't think I'd like giving a site things like my phone number and such. Anyone know the reason for all this?

PaLady-------> just curious!

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13481
   Posted 11/12/2008 6:57 AM (GMT -7)   
They are a very legit group thru Yahoo and have been around for long time. I am not sure what their deal is at all except I am thinking there is alot of paranoia associated with the outfit. What difference does it make whether a person has a pump or with this group is beyond me. They sound very secretive. Susie


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 11/13/2008 12:42 AM (GMT -7)   

Hey Miss Susie - Just read your post re: your health issues/experiences; you've had a time of it, too. Wow.  My mom has ulcerative colitis and your experiences made me understand things she goes through better, too.  You've been a really big source of encouragement for me.  Thank you.

Maybe we'll have to start our own "Pain Pump" group at some point :-) When I first start looking into the pump (late 2006), it was difficult to find info on the web.  I could find all sorts of medical literature; lots of studies and such; but not real people's experiences.  Anyway, if you do get through the Yahoo group - let me know :)

Going to try to get to bed early for me (it's only midnight).  I've had BAD insomnia for weeks and weeks now.  I wake up feeling like a truck hit me and I literally hit delirium by noon.  Makes for a really long day.

--Tina


 

 

Diagnosed with: POTS/dysautonomia; Fibromyalgia; Severe Hypertension; Hypothyroidism; Adrenal Gland Disorder; Chronic Pain - severe carpal tunnel syndrome, migraines, severe back problems, widespread muscle/joint pain....as well as depression/anxiety.

 

Current Meds: 480mg MS Contin, 90mg MSIR, Soma, Effexor and MANY other meds (heart, thyroid, etc)

Past Meds: EVERYTHING.  Fentanyl patches, Actiq (which caused $$$ in dental work), Fentora, Oxycontin, Oxycodone, Kadian, Avinza, Dilaudid and on the list goes.

 

Waiting On: Intrathecal Drug Pump Implantation (Dilaudid/Baclofen combo)

 

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