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Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 12/4/2009 12:07 AM (GMT -7)   
Hi all...

I've wanted to write this post for a couple of days, but I had problems loading HW... Not sure if it was the site, or my computer. Everything else would load ok...but it took forever to bring up the pages here. Anyway, it seems to be working ok now.

I just want to thank those of you that e-mailed me, and asked where I was... and how I was doing... I really appreciate the thoughts and concerns...

As I told some of you already, I was in the hospital for almost 9 days. I had gone a little over a year w/out a hospitalization (from 9/08 through beginning of 10/09); this was a first in the entire six years that I've been ill. In the last six years, I've spent almost 400 days hospitalized. Since the beginning of October, though, this has been my second hospital stay for cyclic nausea/vomiting - which is part of my "main" illness (dyautonomia/POTS). Basically, I get to the point where I can't keep down my meds despite all measures I try here at home...and then head to the hospital for IV fluids and meds... sometimes, I can get away w/ a long ER visit, but I was too sick this time and had to be admitted. I had been about 48 hours w/ no heart meds, pain meds, etc on board...and it took a little over a week to get everything back on board, etc. It was also my 2nd Thanksgiving in the hospital...

The worst thing was that the kids couldn't visit me because of all of the H1N1 stuff; they wouldn't let those under 16 in to visit. My two older ones "passed" for 16 and did come up...but I didn't see the younger four the entire time. I did have a wonderful hospitalist who tried to make an "exception" for me on Thanksgiving and have all the kids come up (I didn't even ask for this; she was just trying to make it happen...but was basically told "no exceptions").

So, that's what was going on in my world, unfortunately! I am on the mend; but pretty weak, and having some severe lower back pain/sciatic pain from being in bed for that long... but just glad to be home and in my own bed...

Anyway, thanks again for the supportive e-mails and concerns. The friendships that I've made here, and just the understand/support from all of you, keeps me going. Really.

Take care... --Tina
Pain Issues: Neck/back pain; migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands, arms, feet; I also have POTS/dysautonomia; CFS/Fibromyalgia; Severe Hypertension; Hypothyroidism; Addison's Disease; Central Sleep Apnea; etc etc

Meds: MS Contin (480mg daily); Dilaudid (8mg/3x day); Actiq (1200 mcgs/1x per day); Soma (3x day); Atenolol; Midodrine; Phenergan; Effexor and on the list goes...

Future Plans: Intrathecal Pain Pump; already completed trial; awaiting my decision for implantation


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 12/4/2009 12:15 AM (GMT -7)   
Oh Tina, I'm sorry to hear you've been so ill and its so tough not being able to see your kids. Both for them and for you! I sincerely hope you continue to improve, its tough once you're run down to get back up to full strength again. Please take it easy and give yourself a chance to properly heal. Are your kids good at helping?

Mine are to a point. I have to give them each a specific task to have any confidence that it will happen.

But I hope you get better really soon, goodluck recouperating, golitho

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 12/4/2009 12:25 AM (GMT -7)   
Golitho... Thank you for your kind words :) The boys are really good at helping. This is a good thing, I know...but the "mommy guilt" gets to me at times for having to ask so much of them... In reality, it's probably not as much as it feels - does that make sense? My husband tries to reassure me... but my viewpoint is clouded, I know...

Thanks again for the thoughts... --Tina
Pain Issues: Neck/back pain; migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands, arms, feet; I also have POTS/dysautonomia; CFS/Fibromyalgia; Severe Hypertension; Hypothyroidism; Addison's Disease; Central Sleep Apnea; etc etc

Meds: MS Contin (480mg daily); Dilaudid (8mg/3x day); Actiq (1200 mcgs/1x per day); Soma (3x day); Atenolol; Midodrine; Phenergan; Effexor and on the list goes...

Future Plans: Intrathecal Pain Pump; already completed trial; awaiting my decision for implantation


punchfit
Regular Member


Date Joined Nov 2009
Total Posts : 89
   Posted 12/4/2009 1:20 AM (GMT -7)   
Hello Momto6boys,

I am sorry to hear of this difficult time in your life.
And to not see your kids would make your spirits very low, as kids are a natural medicine in themselves, just there presence of there beautiful smiles and gentle touch helps so very much for you and for them to be able rto reach out and cuddle mum.
So wonderful to hear your family is a great support network for you and you have them with you to assist with your daily needs.
Please rest as much of possible, so you can recover and get back on track.
My thoghts are with you.
Keep your chin up.
Love Punchfit x

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 12/4/2009 1:44 AM (GMT -7)   
I think Mommy guilt should be banned! But I know what you mean, its very hard to explain to a child that you're in pain or just really tired and can't read that bedtime story. I try and make up for it when I can, but it must be hard when you have 6, I'm only coping with 3, but they can feel like more at times!

I've actually been seeing a psychologist with my yougest child to see if we can iron out some behavioural problems which probably have some basis in my sickness. Its been really rewarding for me, helping me see the me instead of the pain as me. I'm hoping it really helps him too. We see her separately then together.

Are your kids ok with your illness? Mine worries about everything to the nth degree.

But don't be hard on yourself, it really isn't easy being sick or even recouperating emotionally. Hope that makes sense? Best wishes, golitho

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 12/4/2009 2:48 AM (GMT -7)   
Tina


You have been missed!!! I hope your pain gets better! Lower back and sciatic pain can be the worst! I do feel for you, just the idea of your pain makes me cringe! Please take care of yourself!



I wish you only the best!



White Beard

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 12/4/2009 7:12 AM (GMT -7)   

   Momto6boys...I had no idea you were in the hospital....hope you geet to feeling better soon. Wondered where you have been! Take care now!

     Michael


privey
Regular Member


Date Joined Oct 2009
Total Posts : 453
   Posted 12/4/2009 7:22 AM (GMT -7)   
Tina,
Take care now and get well soon. Your kids probably like to help you so don't feel guilty, it makes them feel important or like mom couldn't do this without my help. Keep fighting and kicking lady and hopefully you'll have some extra strength.

cathy

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 12/4/2009 7:44 AM (GMT -7)   
Tina,
So sorry you had to be in the hospital for Thanksgiving...Sure hope you'll feel better
and I mean a whole lot better for Christmas...just try to rest up and get better...
Lots of soft healing hugz being sent your ways with lots of prayers....having
to take a lot of medicines can be hard,..
anyways I sure hope your better soon
(((((((((((((((((((((((((((((((((((((Tina)))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
hugz and keep us posted....
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 12/4/2009 11:27 AM (GMT -7)   
Tina,
I can't believe all you've been through! Yes, you were missed, and even with everything you took the time to post to me and i want you to know I really appreciate that. I haven't posted much today. Have to get off the computer and back on the phone to doctor's offices!

But I am glad you're back and you know, it helps kids to learn skills when you can't do everything for them. Think of it as teachable moments for them if you can.

((((((((Tina))))))))))

PaLady

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 12/4/2009 1:38 PM (GMT -7)   
Thank you all for such kind words and encouragement. I, too, know that the kids have learned a lot through the things we've gone through - especially patience, compassion, and how a family has to come together to help each other out. I *try* to focus on the positives...but, just as we all do, I have my moments of discouragement.

Oh, PaLady...I do understand the doctors and phone calls. I've had to spend the morning making follow-ups to being in the hospital and such, and some insurance issues. Between sitting on hold and dealing w/ it all - it's pretty much wiped out the morning.

Golitho... oh yes, all six of mine have either spoken or unspoken issues w/ my health issues. From worry, to frustration over wanting me to go w/ them on outings, etc, and just the "unpredictability" of our lives - w/ my health, we can't hardly plan anything....it's really day-to-day living around here. We used to have busy, full lives and be "on the go" on weekends, etc. My older ones remember those days...the younger ones don't. There is "some" good in that it really makes us prioritize everything... But, it's got it's downside, too.

Well, the pain shooting down my leg is killing me so I have to get off of here for now.

Talk to you all later; thanks again.
--Tina
Pain Issues: Neck/back pain; migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands, arms, feet; I also have POTS/dysautonomia; CFS/Fibromyalgia; Severe Hypertension; Hypothyroidism; Addison's Disease; Central Sleep Apnea; etc etc

Meds: MS Contin (480mg daily); Dilaudid (8mg/3x day); Actiq (1200 mcgs/1x per day); Soma (3x day); Atenolol; Midodrine; Phenergan; Effexor and on the list goes...

Future Plans: Intrathecal Pain Pump; already completed trial; awaiting my decision for implantation


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 12/4/2009 2:03 PM (GMT -7)   
Tina,
I am so sorry to read about all you have been through in the last couple of weeks. I am truly glad to see you here now and posting again. I also want to thank you for taking the time to check in on me when you got back. You are far too kind. My problems are nothing compared to what you are going, have gone through.
I hope that your Christmas brings you much better health. I know all about mommy guilt. I am living it right along with the rest of you. My older kids remember a mom who was their GS leader, for several troops at one time, took them and 50 other girls camping all of the time and never thought twice about it....went on trips to amusement parks , rode rollercoasters, you name it, we did it......and now my sons, who are at least 6 years younger have gotten the opposite...although I do try, I am not in the same shape that I was then, and my back problems don't allow me to do the things with them that I once did....My husband has gotten very good at taking them camping and doing things with them that I can't.....but I miss those days. The missed field trips because I can't walk, the school volunteer stuff that I used to do, and now can't.....
Anyway, I hope that you feel much better and make sure that you rest as much as you can.
Glad to see you back,
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.
Avascular necrosis of left wrist- maybe hips too


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 12/4/2009 3:23 PM (GMT -7)   
Sandi...

You've always offered so much support and wisdom through your posts, and I could always tell that you could relate to the being sick w/ kids stuff.. You described very close to my own situation. I do feel fortunate that my husband does stuff w/ the kids and tries to fill in the places that I can't... and that they have active grandparents and such. But I miss the things, too, that I can't do...

I am feeling better, except for this sciatic pain that is about to drive me nuts! I see my PM doc on Monday, and then am supposed to have facet injections on Wednesday (need to make sure I'm strong enough to do that, though)...

Tina
Pain Issues: Neck/back pain; migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands, arms, feet; I also have POTS/dysautonomia; CFS/Fibromyalgia; Severe Hypertension; Hypothyroidism; Addison's Disease; Central Sleep Apnea; etc etc

Meds: MS Contin (480mg daily); Dilaudid (8mg/3x day); Actiq (1200 mcgs/1x per day); Soma (3x day); Atenolol; Midodrine; Phenergan; Effexor and on the list goes...

Future Plans: Intrathecal Pain Pump; already completed trial; awaiting my decision for implantation


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13478
   Posted 12/4/2009 7:06 PM (GMT -7)   
Hi Tina,
 
Wow, I am so glad you are home and hopefully on the mend. Gal, I have no clue how you hold it together like you do, you are such a trooper. Just the job of caring for a family and six kids alone is more than enough for a healthy indivdual. I know we never really know what we are capable of dealing with until it hits us right square in the face.
 
I sure hope that some time in the future you can get the pump put in. But, I totally understand your reservations for not jumping up and saying lets go for it. When and if the times comes I hope you will have a dr that is like mine. I have had my pump since June of 05 and for the first time I can honestly say my pain has been under control. But it took getting a new dr to make that difference. 
 
You hang in there and please take good care of yourself.                                                           
 

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.


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 12/4/2009 7:15 PM (GMT -7)   
Hi Tina, make sure you have a relaxing weekend, please look after yourself, best wishes, golitho

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 12/6/2009 12:21 PM (GMT -7)   
Tina,
How is the sciatica? I hope that by now, it is starting to calm down some. It is some horrendous pain, and because it's so darn unrelenting, it is just miserable. We got snow yesterday, so my younger kids are outside playing with their friend next door, snow pants, boots and all. It amazes me how with the first couple of snow falls, they have no problem with the pants, gloves, hats, etc but after that, they don't want to put all of that stuff on.......LOL
As far as mom guilt goes, boy do I understand ........it is nice to have our husbands partcipate, but it really doesn't make our guilt go away, if anything, for me, it adds to it, just because I want to go and do whatever they are doing too, but know if I do go, I am going to either slow everyone else down, or I am going to be in so much pain that I will be miserable the whole time and that's no fun for everyone else either.
Sometimes, I am not sure which is worse..........sigh. It's not easy to live this life , for us, or for our spouses and families.
I hope you are feeling a lot better today Tina.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.
Avascular necrosis of left wrist- maybe hips too


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 12/7/2009 12:59 AM (GMT -7)   
Sandi...

Thanks for asking about me blush The sciatica is better...not gone, but better. I thought it was never going to get better!

Re: the snow - the weather has been strange all over the country. Here in the San Francisco Bay Area, it's been freezing. We've been back here for almost two years now after living in Colorado for two years. The boys miss the snow and having a white Christmas. I know exactly what you are saying about the snow clothes... I remember looking at all of the jackets, boots, gloves, etc times eight of us!

I, too, am thankful that my husband does things w/ the kids and is involved...but, you are right, it magnifies what I can't do. Most days I can handle it; but, like today, I'm frustrated beyond words at life being so complicated. I used to take so many things for granted; now, what I wouldn't give for many of those things back. I can tell by your words that you understand, Sandi. And, as much as I wish we both didn't have these things to deal with...it does help to know that you can relate, as can many people here.

Well, I'm off to bed...to hopefully get some sleep....because, before I know it, Monday will be here and another week of "stuff"! I see my PM doc tomorrow at 10am. I need med refills, and some injections for my CTS. I'm supposed to have facet injections on Wednesday, but I need to make sure I'm stable enough health-wise.

Thanks again, Sandi, for asking about me, and for your encouragement. Take good care --Tina
Pain Issues: Cervical/Thoracic back pain; migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands/arms/feet; I also have Dysautonomia/POTS; CFS/Fibromyalgia; Severe Hypertension; Hypothyroidism; Addison's Disease; Mixed (Obstructive/Central) Sleep Apnea - on Auto BiPap; etc etc

Meds: MS Contin (480mg daily); Dilaudid (8mg/3x day); Actiq (1200 mcgs/1x per day); Soma (3x day); Neurontin; Atenolol; Midodrine; Phenergan/Zofran/Reglan; Effexor and on the list goes...

Future Plans: Intrathecal Pain Pump; already completed trial; awaiting my decision for implantation

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