Well, I spent the morning getting the pantry and freezer restocked for my recovery time. My surgery isn't until the 17th but am expecting my last Visit from good old aunt flo any day and I can't leave the house during for fear of a nasty, embarrassing accident. I am having an ablation while I am under for the ovary so this may hopefully be my last "comfinement".
So it had to be today. Tried to buy an electric blanket. Not in the spring, I guess. I have been switching my big heating pad from back to tummy to knees, etc. THe tops of my legs hurt so bad I can hardly stand it. That has been an issue for me off and on for the 4 years I have been sick....all kinds of muscle and joint pains and if I overdo I my whole body aches like a bad flu.
I am not really expecting alot of relief from my surgery but a gal can dream. I'm pretty sure this ovary thing is just another of those things they have found while looking for my main issue.
I truely appreciate the tips...have bought throat spray and losenges and stool softeners. I have my tapes of some shows I have taped and not gotten to watch. And the pantry is full of stuff the kids and DH can make. Anything else you guys can think of I should do let me know.
Stupid but...I don't have a will or living will and since I am going under general for the first time in almost 35 years and am not in the best of health anyway I am thinking of doing that. But it just seems so morbid and like borrowing trouble.
Listen, the will and living will are not morbid to have. We have had a will since we bought our first house. We also appointed a guardian for our son at that time (not a issue now he's 21). When I went on the waiting list for a liver transplant I was told to get a power of attorney, etc. in case anything happened. It was a relief knowing that was in place. My husband and son know my opinion on prolonging life with machines as well. I don't expect to ever have to use these but there are there just in case.
When I have my surgery, because of my liver function, my chances of something going wrong jump from 1% to 5% to !5%. They major odds are still in my favour but at least everything is taken care of.
Just an example of what can happen if you don't have everything in order. My sister(we were very close and this was devistating for me) passed away suddenly last year due to carbon monixide poising when her appartment burned. They revived her but brain damage was extreme. I knew her wishes and told them not to use heroic measures. She had no will and no designated recepient on her insurance policies and pension plans. She was estranged from her husband but because they were still legally married. Our lawyer said that anything she had left had to go to him. She did not have much and I was ok with handing over everything( along with the headaches) to him. I know my sister would have preferred that we receive any funds because we had helped her out many times. We did't need the money so I did not worry about it anymore. It would have been much easier if she had everything in place. She was only 55 she I guess she thought that she had time to do it later.
I worked as an xray tech for 30 years and because of what I say families and patients go through I have had very firm ideas about what I would like should something happen to me. Please take care of this ASAP, please. It is better for everyone concerned.
Sorry about my wordiness but this is a topic that I feel strongly about. Good luck and I am sure you will be fine. The odds are generally in our favour in most cases. Think positive.
I would strongly suggest a will and a durable power of attorney for health care. I realized before my last surgery that if things did go wrong I would be leaving my children and other relatives with a tremendous burden and it made me focus on what I really want in terms of end of life decisions. I don't think it is "jinxing" your outcome to be prepared in this way. Hope it goes well.
Okay, I need to do a lecture thing. Although I am now a C.A.O. of a small municipality in Ontario, in my previous life I worked in a busy law firm. Please, Please, Please, go and get the will thing done as well as a living will (not sure where you're from, but here we call it a power of attorney. We are all praying that things go well for you on the 17th, but things can and do happen. Why leave things undone - I have done many estates where no will was signed and it can be nasty. Also, it's better for you to make decisions while you can such as health care (do not resusciate orders, etc.) than to have someone else make that decision for you. In some provinces and states, you can download basic will and power of attorney forms from the internet. Just follow the instructions or if that's too intimidating, call a lawyer.
And of course, this little sermon goes for all of you out there facing surgery and other health issues. Don't let someone else make decisions for you - take control girls - we all have it in us - BTW today is International Women's Day - Hurray for all of us, our strength, our faith and the courage to carry on. Spice
I had a TIA(mini-stroke) just after the first of the year. In the ER they asked if I have a living will. My DH and I looked at each other blankly...thinking, wow this coudlbe serious! I said, "Honey, don't let them turn the machines off untill they are sure." He said he'd never let them turn anything off! HA HA!I guess this is not enough.
I went so far as to bookmark some do it yourself sites. They had our states forms. So I will if the rest of you how don't have them will. I am happily married and I don't think there would be any problem with property, everything is jointly owned. But if I go by my own philosophy I need the papers. I always say if you have your umbrella it won't rain. Since the first time I had to go straight from the docs office to the hospital cardiac floor with nothing but my book, I take a bag to appointments...never had it happen again. I will do the papers and put it in my "so I won't have to stay" bag. I am to have outpatient surgery but you never know.
I put living will and such on my list before the surgery and did quick adequate versions. My optimistic, "please let me bury my head in the sand" mom, kept saying everything will be okay so why do I need to push myself to do this too? I finally told her, okay, I guess it's not a good time and I'll do it as one of my projects from bed after the surgery. She did crack her up with laughter at the silliness of that idea. I found doing the paper work wasn't that stressful. Reading other people's I loved like my mom's was more stressful than thinking about my own!
I'm been meaning to comment to you, and I'm not sure before surgery is a great time to do it -- but also before I forget is a good idea... Earlier I had seen a description of your symptoms, and they were very familiar, but I could never find the post again to check them. Any chance you had a cold/virus or accident or stomach bug shortly before the fatigue set in? It sounds very much like CFS and without any of the symptoms that would rule it out. And there are things that can help if it is. The one symptom I wanted to double check before saying anything was if you have memory, brain fog, thinking trouble. (If not then it's not likely to be CFS.)
When I got sick with the CFS I thought I couldn't have it because I soooo sick. I wasn't just under the weather. I also thought it was a conglomerate of symptoms and a diagnosis used when doctors didn't know what else to say. What I've found is that it's a very distinctive illness that can be recognized. Such as, when someone new comes to a support group meeting in most cases we know if it's CFS or not CFS in minutes. (From this site by contrast it sounds like FM is used as a wastebasket diagnosis even for woman who have other conditions.)
I don't want you to have this, but since you are searching for answers, if I do have useful information, I want to put it out there. A good site to check out is www.cfids.org. There is also a blood pressure condition common to it (dysautonomia, specifically neurally mediated hypotension or pots) that can distinguish it and behavior changes can help. Actually the IV used during surgery can make you feel better than you have in years. If it sounds about right or you have more questions, just post (in a new post so I can find it).
Even the flu-like symptoms post-effort is classic to it and different than other illnesses. Muscle and joint pain, and extreme fatigue are also standard issue.
Well, if I don't post something to you before the surgery -- much success for a great one that goes smooth as can be.
THere were no new posts allowed when I read this. If you don't reply to this thread I'll throw this up to a new one today.
Brain fog??? Cognitive defect, dunder-headedness, whay-did I- come-to-this-room-itis....wait what were we talking about???
IT IS SO BAD!
I actually am a member of the CDIFS site! I am just having such trouble getting a DX in my area! They think it is lupus, RA, lyme, MS...nothing difinitive! The infectous dis doc said there is a 5 to 7 year grey period when the symptoms are collecting before the dx can be made for some of these things. I am going to have to go back to searching, and go to a farther away big hospital for dx. I have arthritis with out bone degeneration and some things that don't fit but ALOT that does! Maybe I need to do some more research in that area. They thought maybe FM but no tenderpoints...on the day I finally got to see the rhumy. Of course it HAD to be a good day.
One clue you may be able to help me with...the only time my head "cleared" was when they thought it might be lyme and put me on doxy. I was balancing the check book till 10 at night and all the stuff I'd run into the ditch in the last 2 years. DH said I was "back". When the tests didn't show lyme they took me off and all the fog returned. "Maybe it was like a placebo - pshycosimatic(sp) effect???" they summized since I didn't have lyme! BS!!! Do you have any input on this? Steroids didn't help. SSRI's just made me NOT CARE that I couldn't balance the checkbook....but the bank and DH DID care!
I have been avoiding docs for the last year. No help from them and broke and discouraged so I was "roughing it" on my own. Found ovary thing by accident. Now however my out of pocket with ins is meet so it's the best time to pursue this again.
I had been trying to get docs to see the big picture and figure this out but to no avail. Had a sleep study done after the TIA and am waiting for results.
I really appreciate your interst in my situation. If you have web sites or info feel free to pass it on. Thanks, Cindi
A couple other ideas on the doxy occurred to me... If it increased your blood volume (which I don't know antibiotics to do), but if it increased it, you'd feel a lot better. I was more cognitively astute in the recovery room and the next few days after with the IV fluids still in me, than a week later -- no slurred speak, words spelled the way I thought they should, letters of the alphabet written without my hand getting confused. Most CFS patients are low in total blood volume. It's not the routine lab test that shows the ratio as good, it's a radiology test on total mass that shows being low by a couple quarts.
Another idea is if you changed your diet in any way at the same time to accommodate the doxy such as adding a food or more likely removing a food like dairy or a vitamin pill, that could make a big difference. BTW, Steriods don't work well with CFS even though they are helpful in MS.
Well, no one have every suggested I don't have enough ideas... Hope some of these are helpful.
To start with "SSRI's just made me NOT CARE that I couldn't balance the checkbook....but the bank and DH DID care!"
-- I'm still laughing, very funny.
Lyme can be tricky to find and looks very similar to CFS so that's one area to really make sure (with Western Blot of course). I have some doctors names near me that are supposed to be good with lyme and maybe could point to someone. I don't remember where you are now of course? One alternative doctor here is claiming that on going back through his CFS patients he's finding lyme at a rate of 70%. I doubt that's a true number, but it points out the importance of follow through (for me too).
I do have an idea for the dyoxcyc...antibiotic. With CFS the immune system is not working correctly. As a result, frequently viruses, yeasts, bacteria and anything else can get more of a toe hold and increase in the CFS patient. This is why there is a higher rate of EBV (epstein barr) in the CFS population. It doesn't cause CFS (in most cases) but it increases with it and then in those patients it causes increased symptoms. Drugs like low levels of antibiotics over a longer time work in some, again some, CFS patients because it reduces all that extra load in their system. Sometimes it's so much so that they can feel much better, although it's usually not to the point of cured (or it would be popular treatment). It's also why there are frequent announcements in the cfids world about "found the cause, diagnositic test" and then it will turn out to be a new invasive bug common to about 30% of the cfids population compared to almost none of the regular population. It's also why so much stuff works to some extent on some of the cfids population and is miraclous in a few, but then doesn't pan out to be all that effective across the board. All this is my opinion of course, from what I've gathered over the years and seen in very doctor's hypothesis.
Also, alteratively if you have undiagnosed lyme, antibiotics will make a difference.
Dx for autoimmune conditions can take years as you said. However, you aren't showing any of the odd symptoms that usually lead up to that. From what I know so far you are fitting CFS to a 'T'. Good old arthrisis can co-exist with lots of illnesses. (Am I reading the right diagnosis on the arthrisis?) It can be hard to find someone to diagnosis it. Doctors don't want to be labeled as the quack that took cfs seriously. The cfids assoc does have a list of doctors. Maybe I'll have an idea when I know where you are. If you are willing to travel Dr. Lucinda Bates has a clinic set up someplace in the midwest. She's done lectures for the assoc one of which I attended and she'll work with your GP.
To what extent have you checked into the dsyautonomia's, neurally mediated hypotension (also called delayed orthostatic intolerance) and pots (p-something orthostatic tachocardia syndrome). Guess which one I have? They are blood pressure abnormalities and understanding them can help avoid crashes.
For the surgery, you may want to ask the anethesiologist to avoid histamine releasers or ask your GP to suggest it. They have other alternatives. It may be too much to ask without a diagnosis without sounding kooky... The recommendation comes primarily from Dr. Patrick Class an anetheologist with specialtiy in CFS. One site with it is:
A search will turn up the other sites with the same comments (that I can't find in my pile right now). There are tons of suggestions but this is really the only one that's not standard practice and all that meaningful. (My GP sent it in his pre-op letter to my surgeon.)
If you want to email me at some point I'm at (and I'm writing this creatively to avoid putting my email onto the web) borskyc which is at yahoo. That ends in com of course.
Well, I've rambled on long enough. I do hope the surgery goes gggrreat!
You've given me lots to check out. Good research for next week instead of scary surgery stuff!!
Kind of wierd, though. The infectous dis doc had me on amoxacillan 500mg 3x a day for 2 months and it only made me sick...kind of like it was trying to kill something but I never got better.He thought some kind of stealth infection.
But one week of doxy had worked right away.
I am so glad for your time to help me. I am in Parkersburg WV. My next step after the ovary surgery was to go to Ohio State University Hospital to a rhumatologist who specializes in lupus.
There is just no one here to hepl. Thanks, again. CIndi
Different antibiotics kill different things, and doxy is generally stronger or more general than amxic.
It looks like you are sort of driving distance to Maryland/Washington D.c.. If after the surgery you want the names of the various doctors who diagnosed me, (some of whom I still see and some were specialists at the teaching hospitals that I don't need any longer), I can pass them onto you. I may not be viewing the forum frequently by then (hope to feel better) so you might need to email. Hopkins still does their tilt table test for NMH even though they don't have CFS department any more and they have a great handout (30pgs) on it. If Ohio is closer maybe the rheumtologist will figure out what's going on, or send you to someone who can!
I kept posting my address because I felt uncomfortable to go so off topic on this forum. After the last few days, guess it didn't matter much.
The town with a C near you I thought might be the home of Dr. Charles Lapp. It isn't but if you'd like to head to the Carolina's he's down there (you can do a search for his website).
The reason I was mentioning him and some of the doctors in Washington is that they are all known in the CFS community as expert and/or have been researching in it, so I was hoping they could give you a crisp answer and reduce the running around time.
When I checked at Dr. Lapp's site out of curiousity I found a piece of data about vaccines I've been trying to find for two years for an unrelated immune test that I need! So thanks. I wasn't expecting that to happen.
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