need some comfort

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autunm
Regular Member


Date Joined Mar 2012
Total Posts : 71
   Posted 4/15/2012 10:40 PM (GMT -6)   
hi everyone.i have not been here for a little while due to being sick and in pain.i hope everyone is having a better day today.i am sitting here typing away with my usual lousy headache.i suffer chronic migranes and headaches,chronic bladder pain and ic,ibs,upper tummy pains and bad sinus facial pain.lets just say each day for me sux big time.

waiting on a long list to see an allergist which is about 15 months.tried everything for my migraines and headaches and have resigned myself to the fact that no one can help me.my intercystitis cystitis is a nightmare and often leads me to tears.i am having a drug put into my bladder for the next 28 weeks to see if it can calm my inflammed bladder down a bit.my bladder does not like cathiters and i will be peeing razor blades for the next 7 months.not looking forward to that.i am highly stressed out with 3 teenage kids and it does effect me with my health issues.i have trouble sleeping due to pain.i am on high amounts of codeine everyday but they don't really work.my body can't live without codeine.tried to get off 3 times and just about keeled over from the excruitating pain and always landed in hospital in meltdown mode.

i have no family support at home and i have not worked in 12 years which is making our life really difficult.i just need some comforting and supportive words.i am so lonely in my chronic pain.my hubby thinks i am making up all my chronic pain issues and health issues to get attention and so does my parents.they have all got to be joking.why would i make it all up just to get attention which i could get attention without bring chronic pain and illness into the conversation.

i am struggling so much each day and i am always depressed.i am trying not to whinge as much about my pain at home because my family is sick of me talking about it.i just hurt so bad all the time and i have been like this for over 25 years.i just wish someone would give me a hug and ask how i am. mad

(Hi Autumn - I hope you don't mind... I broke your post up into smaller paragraphs, just so I could read it better... some of us have problems w/ tracking longer posts. I want as many people to be able to read it and support you. Thanks). --Tina

Post Edited By Moderator (Momto8kids) : 4/16/2012 12:53:33 AM (GMT-6)


Splashdancer
Veteran Member


Date Joined Aug 2009
Total Posts : 928
   Posted 4/15/2012 11:33 PM (GMT -6)   
Autumn, I am so sorry that you are in so much pain. I may not be able to give you a hug, but I can tell you that I care. I know what you mean about the family 'issues' - I can relate, definitely. Chronic pain can be very lonely and isolating and when the people we love are not empathetic, don't understand, don't believe us, or whatever, it can make it so much harder. I know it's difficult, but please try not to worry about what others think - it will only cause you unneeded stress and that itself can increase your pain levels. Just know that the people on this forum care about you and understand what you are going through. I hope the medicine that you will be getting helps you. I'll be thinking of you and hoping for the best! Have a peaceful day.

Splash

Leebie3
Regular Member


Date Joined Mar 2012
Total Posts : 171
   Posted 4/15/2012 11:37 PM (GMT -6)   
(((((((((((((((((((((((((((((((xoxo)))))))))))))))))))))))))))))))))))))))
diagnosed with IBS 2006.. doc querying IBD 2012.. undergoing testing.

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3694
   Posted 4/16/2012 12:22 AM (GMT -6)   
Hi Autunm....I will ask you how you are doing. So how are you doing autumn??? I have wondered what happened to you? You have been missed!!! I am sorry that you have been I in so much pain! I think Splashdancer explained about being lonely with pain and not having family and friends understand very well and I totally agree with what she said! Like the rest of the folks here, I do understand!!! I will not give you my sympathy, as you do not need that!!! But I will give you my empathy, and my attention, and my support!!! Like everyone else here on this forum, I am here for YOU!!!

Your not alone autumn!!! Even though your having problems, it was good to hear from you, and I am glad that you are sharing your problems with us!! That means allot!! I just that we can help you in some way!

I do wish you well autumn!!
White Beard

Oh yes one more thing!! {{{{{{{{{{{{Autumn}}}}}}}}}}}}}
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

Post Edited (White Beard) : 4/16/2012 12:25:17 AM (GMT-6)


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 4/16/2012 1:09 AM (GMT -6)   
Hi Autumn,

I'm glad you posted and reached out for support. It's really important to do that and let others try to carry you, when you can't do it yourself.

We may have different health/pain issues (well, I do get migraines - so I can definitely relate to that)... I can relate to many of your feelings and circumstances. Probably many here can.

Chronic pain can be very isolating - especially when you don't have a strong support system. And depression is linked hand-in-hand w/ CP many times. Just as a side note on that - have you ever used any medications to try to help w/ the depression? I would be in a deep, DARK hole w/out my anti-depressant.

Raising teenagers can absolutely affect (and cause) health issues! I have 3 teenagers and 1 "pre-teen". While my boys are pretty good kids - they definitely have their moments of moodiness.... trying to find their way in life... not to mention just all the things that kids deal w/ in this generation.

You say about being on high doses of codeine and that it's not really working. Do you have a doctor that might help you explore alternative medications? Many of us here are "dependent" on our narcotic meds... meaning our bodies would rebel if we just stopped. Are you saying that you want to get off these meds.... or just find something that works better?

Re: your family - I'm very sorry you don't have an understanding family... :( Has your husband ever gone w/ you to the doctor - and maybe your doctor can better explain things to him? Or is he unwilling to do this?

The only thing I can share, from my own experiences, is that there just are some people, who unless they've walked in your shoes, just won't or can't understand - and they usually try to pass off their lack of understanding by blaming the person ("she has to be faking it" or whatever). As painful as I know it is.... I would try to build a different type of support system.... be it w/ understanding friends.... or people here on the forum, etc. I know the wonderful friendships I've formed here on the board have gotten me through many bad days.

Many hugs to you, Autumn. Keep reaching out.... --Tina
Moderator - Chronic Pain Forum

My faith and family sustain me even on my worst days... as well as my wonderful friends here at HW.

Health/Pain Issues - too many to list; feel free to ask

Boxerlover
Regular Member


Date Joined Dec 2006
Total Posts : 275
   Posted 4/16/2012 1:29 AM (GMT -6)   
Autumn I can so relate to the bladder issues. I have wondered at times if I have IC. I have chronic kidney stones and bladder infections and I have peed razor blades many a time. Mine does not like caths either in fact the last time a nurse tried it was spasming so hard she couldn't even get it in. I really feel for you struggling with that and the headaches. My husband gets migraines although his have improved over time.
 
I can't even imagine raising 3 boys so give yourself some credit. I'm sorry you do not have any family support. My husband goes back and forth with the I don't think you are as sick as you think you are to being an absolute God send. Unfortunately he is in the former at the moment and I too just feel alone and beaten down.
 
I wished I had some concrete answers but as others have said you are not alone and reaching out is a positive step. I'm thinking along the same line as mom in that is there another doc you could speak with. Codeine is not that strong of a pain med and you may get better pain control with something else. Or do you want to get off all medication?
 
((((((((((((((((gentle hugs)))))))))))))))))))))

autunm
Regular Member


Date Joined Mar 2012
Total Posts : 71
   Posted 4/16/2012 5:48 PM (GMT -6)   
thanks tina for reminding me to make paragraphs when i post.i keep forgetting.a huge thank you to splashdancer,monto8kids,whitebeard,boxerlover and leebie3 for your wonderful and kind comments.what i am going through is nothing compared to all of you guys.i should be supporting all of you.

boxerlover,from what you said,it might be worth looking into the ic business.i assume you see a urologist?here in australia,you can't get anything stronger than panadeine forte from a general practitioner.you either have to go to a specialist which i can't afford or go to a pain clinic,but the waiting lists are very long to get into those.i am in a lot of pain but i don't really want to take anything stronger.

momto8kids.have you really got 8 kids?amazing if you have.about the antidepressants,i am on a preventative migraine drug called dothep and it is actually an antidepressant so no doctor will put me on more antidepressants even though i do need it.i have not noticed much difference in my depression with taking this drug.i have talked to a lot of coucilers(can't spell)over the years but i have learned that only i can get myself out of my depressive states which i have done a lot over the years.

as everyone said,it is common for family and friends to not understand a person's chronic pain issues and now i am realizing i am just one of the unlucky ones who does not have a supportive family.my twin sister is married to a wonderful man who is supportive of her chronic pain issues,migraines and i think she is very lucky.

thanks again everyone.it is good to know that there are people out there who are supportive of others while suffering themselves and who actually care about strangers.have a nice day everyone. tongue

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 4/16/2012 7:59 PM (GMT -6)   
Hi Autumn,

No worries about the paragraphs.. if you forget, it's ok! I just wanted to make sure others could read your post and respond.

I do have 8 kids... we had 6 boys when I was healthy - and then I had a surprise twin pregnancy 18 months ago... two little girls. Trust me, there are days when it amazes me, too, lol. The boys are 17 down to 8....

It was good to hear back from you... and, like we said, continue to reach out when you need support...!

Take good care. --Tina
Moderator - Chronic Pain Forum

My faith and family sustain me even on my worst days... as well as my wonderful friends here at HW.

Health/Pain Issues - too many to list; feel free to ask

fireflyhillary
Regular Member


Date Joined Jan 2012
Total Posts : 148
   Posted 4/16/2012 8:13 PM (GMT -6)   
*hugs Autunm*
I can completely empathize with your Interstitial Cystitis pain- I was diagnosed with it in 2003 after being told I was having UTI's over and over again, when most of the time there was never any bacterial growth. I was one of the lucky ones that got a diagnosis within a year's span- most people don't get a confirmed diagnosis of IC for years. I know how bad that pain is, it is one of the worst pains to have. I am lucky in that mine has not been bothering me for quite some time now, and I take Paxil and Hydroxyzine for it and they both help a lot. I have had SO many bladder installation's done and they hurt so bad. I am very hard to catherize due to my urethra being small and hidden, and I too suffer great pain after being catherized. So sorry you do as well! I hope the bladder installation's help you, they helped me some of the time, but not always, and the pain the same day of was always horrendous for me. I hope you don't have a bad experience with them. Are you on Elmiron for the IC? That's the go to drug for IC. I was able to stop taking it years ago, but most people are not that lucky. I actually stopped taking it because it stopped helping...and then about 1-2 years after I stopped taking it my IC got better. I still have flare up's occasionally, but not very often anymore at all. I do hope you can get some relief from it!

I am sorry that you don't have any support- that is such a hard thing to deal with. When I was first diagnosed with IC a lot of my family did not believe me, and they only started believing me after they would see me suffer from it. I was lucky in that I had my then husbands support. I don't even know what to say for how you can get your family to believe you and be supportive. Maybe print things out for them to read about the conditions you have...I did that and it helped my family get a better understanding of what I was dealing with. All of us here on the forum are here for you and want only the best for you. Please feel free to ask for support anytime you need it!

I do hope things improve for you soon!
Current: DDD L4-S1, Arthritis L3-S1, Facet Syndrome, Interstitial Cystitis, Vulvodynia, Restless Leg Syndrome, Bi-polar, IBS, Fibromyalgia, PTSD. In past 6 months have had epidurals, facet blocks and radiofrequency ablation.
Past: Endometriosis, Adenomyosis, Polycystic Ovarian Syndrome. 3 laparoscopies, 2 cystoscopies, total hysterectomy, appendix & gallbladder removal.

autunm
Regular Member


Date Joined Mar 2012
Total Posts : 71
   Posted 4/16/2012 9:49 PM (GMT -6)   
hi fireflyhillary.what a name.thanks for all your kind and caring words.we have a few things in common.ic,gallbladder removal,hystorectomy.my right ovary is enlarged and there is a mass of cysts on them but the hospital feels that surgery is not needed.i too suffer bad ibs.it has really effected my life and i hate it so much.i waited 3 years to have a cystoscopy which was done 2 weeks ago.my bladder is very inflammed and i have ic.i have suffered chronic pain in my bladder and pubic area for 3 years now and i have urge incontinence and overflow incontinence and all of that has also effected my life a lot.what you have suffered sounds terrible.i am not sure where you live but here in australia,i am going through the free hospital system for my ic.no doctor has ever mentioned elmiron but i believe it is very expensive to buy.i have heard of this medication but my specialists will not give me any good medications because i have to pay for it and i can't afford it.i am on ditropan but it is not helping at all and before that i took pro-banthine which is the same.

sorry,i forgot again to do paragraphs.the doctors were going to put me on visicare but the hospital rejected my attempts to get it cheaper on my health care card.i have heard that having dsmo treatments don't really work but i feel i have no choice.if i say no to something,the hospital will not help me anymore and they will get the next person on the long waiting list.i can't afford private health insurance.i hope your ic does not flare up too much.it is debilitating and it seems to hurt worse when you try to sleep.having my chronic headaches and migraines is not helping the situation.

thanks for being supportive,it means a lot to me.i have made my husband and kids look at information on my ic but they don't care.my teenage kids are wrapped up in their own little worlds of school and social life.my hubby works a lot and he is just too stressed out to care.i hope you have never been in that situation with family.anyway,have to go again so thanks and take care. turn

autunm
Regular Member


Date Joined Mar 2012
Total Posts : 71
   Posted 4/16/2012 9:58 PM (GMT -6)   
hi tina.thanks for the nice words.i honestly don't know how you manage 8 kids and deal with bad health and be a forum moderator as well.are you a supermum or something?myquestion-how do i make all my information about my illnesses show up underneath every post i type each time i reply to something?i am a bit confused.

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 4/16/2012 11:02 PM (GMT -6)   
Autumn,

I have my days, trust me, lol. And the "supermom" myth is just that - she doesn't exist, lol. I just try to do my best each day... some days are great.... some days are lousy - but then I just start again. It's really all anyone can do! Yeah, my health issues are hard on my kids in different ways.... that being said, I think it's taught the kids to be compassionate towards others, because you never know what someone is dealing with.

To put a "signature" to to "My Profile" (upper right hand corner)... it will say "Edit Profile" and there is a field that is for your signature. Let me know if you need further help!

Take care tonight. --Tina
Moderator - Chronic Pain Forum

My faith and family sustain me even on my worst days... as well as my wonderful friends here at HW.

Health/Pain Issues - too many to list; feel free to ask

autunm
Regular Member


Date Joined Mar 2012
Total Posts : 71
   Posted 4/17/2012 12:30 AM (GMT -6)   
hi mumto8kids.i still think you are amazing to be able to cope with raising such a large family and being sick yourself.i am struggling to raise 3 teenagers and the stress does make my pain levels a lot higher each day.you should be proud of yourself.thanks for the info.take care. shocked
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