I have to have surgery - AGAIN!

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MomofC&C
Regular Member


Date Joined Aug 2006
Total Posts : 32
   Posted 11/24/2007 7:06 PM (GMT -7)   
Hey Everyone!
 
It has been a while since I have been on here.  Somehow I seem to think that if I don't check in here very often I am not as sick as I am......does that make sense to anyone but me?  You probably know the feeling........."If I just don't think about everything that is going on, maybe it will all go away." 
 
Anyway, since I last met with all of you I had surgery in August for a prolapsing bladder.  Unfortunately the surgeon was a complete idiot and didn't address that the baldder was hiding another condition.  So now, I have to have major surgery this time.  I don't know about the rest of you, but I have a hard time recovering from anything.  I am just now getting back to "normal" from the surgery in August and here we go again.  I just get so upset when I am not taken seriously by doctors.  The doc I saw last Tuesday (a different doctor) said that the other condition I have has definately been there for a while and there is no way the other doctor wouldn't have noticed it.  In fact the condition is so bad I have been referred to a pelvic floor reconstruction specialist, the doc I saw cannot even do the surgery. 
 
Sorry to dump on all of you, I am just so sick and tired of being sick and tired. It just seems that anytime I get any of my life back, something happens to set me back. 2 steps forward, 4 steps back.  I am just hoping I can get through the holidays before my new problem has to be addressed. 
 
Steph

Seronegative SLE '06 - IBD '06 - Kidney Involvement '07
 
Meds:
Sulfasalazine, CellCept, Topamax, Elavil


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/24/2007 8:03 PM (GMT -7)   
Hi Steph,
I've been dealing with bladder issues myself and they can drive you absolutely crazy. And male urologists don't seem to understand bladder infection pain, short term or long, and that it is bad. I've been retaining urine and not going and have trigonitis, though my bladder is normal but for polyps, which they refuse to remove no matter how bad they hurt. I get up and go frequently and not much at all. I am sorry to hear about your surgery and have nothing but good wishes and hugs and prayers for the relief of your problem because I total understand pelvic pain. I understand about forgetting about it and being tired of "being sick", not to worry. I hope they can get you to a competent surgeon and get your issue straightened out once and for all. I will keep you in my thoughts and prayers and hope you get through the holidays as you wish and painfree.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 11/24/2007 10:13 PM (GMT -7)   
Steph,
   I'm sorry to hear you will need surgery again...((Hugs)). Do you have it scheduled yet? I hope it goes well and you will have a speedy recovery. Please keep us updated and take care. You will be in my thoughts and prayers.
                                                                  Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:Methotrexate,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folic acid,prednisone,lunesta,Chantrix,Tramadol,Nitro.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


Dartmoor
New Member


Date Joined Nov 2007
Total Posts : 3
   Posted 11/26/2007 7:08 AM (GMT -7)   
Hi Steph

Am new here.

I'm tired of being sick too and having to deal with constantly stumbling, picking myself up and falling down harder the next time. I've had lupus and RA for 20 years (am 42 now), about to have "final" foot surgery (all joints fused) and am just sick and tired of everything in my life as well as being sick. I would love to say chin up girlie - but i know it sounds lame when you feel so low - what i would say tho is that yesterday, when everything was falling apart around me and my head was mush, somehow i managed to make some peace in the thoughts in my head by "forgiving" the stuff that was going wrong (bloke stuff and disabled child stuff). It did make me feel better in my head. I'm not doin too good right now (as you can probably tell) but i just wanted you to know that for all the bad times, there will be some good times too where it will all feel less of a struggle. Try and stop for a while, just close your eyes and find a space in your mind where there is no noise, just peace. I know, sounds stupid a? Maybe give it a go. You take care. Dartmoor.

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 11/26/2007 8:15 AM (GMT -7)   
Steph, I'm really sorry you have to have another surgery. I think a lot of us have a hard time recovering from things like surgery. Recovering from surgery can be hard for healthy people, and I think it is extra hard on those of us with autoimmune diseases.

Hang in there and know that we are here for you.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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MomofC&C
Regular Member


Date Joined Aug 2006
Total Posts : 32
   Posted 11/26/2007 8:29 AM (GMT -7)   
Thanks everyone for your awesome replys.  I have said this before, this is the place I come to really vent. confused
 
Babs - No I am not scheduled yet.  Hoping to have it done after Christmas but before New Years - all of my deductibles have been paid for 2007.
 
Dartmoor - What you said does not sound at all stupid.  Thank you for the wonderful thoughts.  Most of my problem is the big "G" word - GUILT!  I feel very guilty for being sick, I have not been ableto work for 2 years and my lack of income coupled with my medical bills puts a HUGE financial strain on my family, esp my husband.  I feel guilty for not being the kind of wife and mother I think I should be and I feel guilty for making my family worry.  I do have good times and for those times I am eternally grateful, but also know the strain this illness has put on my family.  I told my husband the other day that there should be a lemon law for spouses. :-)  
 
hippimom2 - I thank you for always being there for me.  I appreciate all of you!
 
Steph
Seronegative SLE '06 - IBD '06 - Kidney Involvement '07
 
Meds:
Sulfasalazine, CellCept, Topamax, Elavil


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 11/26/2007 9:59 AM (GMT -7)   
Steph,
My husband said that he wouldn't trade me for a healthy wife no matter what. I am guessing your husband would say the same. If he doesn't he should. We may not be able to work and the medical bills may become burdensome, but we do make a huge impact on the lives of our families in a positive way just by being alive. Each person we interact with, no matter how small that interaction is, has an effect that ripples along to the people they interact with. In this way we can have a huge impact depending on how we choose to handle interactions with others. Consider the patience and caring you teach your family through being sick- how many people will benifit from their having first hand knowledge of just how hard things can get when you are sick. Consider the person you offer comfort to who is suffering, consider everyone here and how many times you have said something that made someone feel better or maybe even gave them a piece of information that helped them deal with what is happening to them. Every person you touch touches other people and perhaps your touch will make that person's touch better in some way.

Consider my husband and a couple of my friends back before I was married to my husband. I was in a seriously abusive relationship- my ex was at the point I likely would have been dead within a few months and my daughters with me. My current husband and a few friends got together and made a plan so I could get myself and my girls away while my ex was at work. My own family refused to help me and insisted I had to stay with my ex for the girls. My girls and I are alive and in as good of condition as we are because of my friends. My husband and I ended up together only because someone offered me a way to get away from my ex. Our being together has nothing to do with his help in getting me out of that horrid situation, but it helped make it possible. Now think of all the people my girls and I will and have touched in our lives since the day we got out of that house. How many people's lives have we changed- even in tiny unnoticable ways? How many more lives will we change in the coming years? I know one for certain. My grandmother decided to fight her own disease because of my girls. I may have had to give up costody to save my daughters, but doing so also saved my grandma who was slowly fading away because she had given up. How many lives will that add to those she has touched?

You see there is a ripple effect every single time a person has any interaction with another person, place, or thing. Positive or negative every single thing we do eventually affects others- sometimes the affect is immediate.

We should never feel guilty for being sick. I know we all do sometimes, but being sick does not negate our value. Being disabled and unable to work does not negate our value. If anything enduring what we have to endure should increase our value because we can offer perspective to others. Never think your family would be better off without you, you have no idea how many negative effects that could cause.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone


lupus fighter
Regular Member


Date Joined Nov 2007
Total Posts : 50
   Posted 11/27/2007 3:55 PM (GMT -7)   
Hi Steph,
I think everyone can relate to being   sick and tired. Sometimes it just helps to be able to express how you feel. I hope you have a good holiday and a speedy recovery. You are in my thoughts. cool
Loving Life 

Post Edited (lupus fighter) : 11/30/2007 11:37:39 AM (GMT-7)


MomofC&C
Regular Member


Date Joined Aug 2006
Total Posts : 32
   Posted 11/27/2007 5:27 PM (GMT -7)   
To add to the delima, I just learned that my Grandmother passed away yesterday and I have to now make an emergency trip to Michigan.  I have lived in Florida for 5 years and I do not tolerate the cold well at all anymore.  I cannot hold a glass with ice in it, or a can of soda or ice because my Raynauds has gotten so bad the past year.  So if you would, please send warm thoughts my way.  :-) I just got back from the pharmacy so I have all the meds (pain and otherwise) that should get me through.  I also started my mega doses of vitamin C and things becuasethe last thing I need is to get sick.  My doc told me today that I would havea very hard time fighting anything because ofthe dose of Cellcept I am on.  I thank you all for your kind words.  I will check in when I get back. 
 
Steph
Seronegative SLE '06 - IBD '06 - Kidney Involvement '07
 
Meds:
Sulfasalazine, CellCept, Topamax, Elavil

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