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Life With Lupus

I am still here


#41

I sure understand your fatigue after all the stresses you had while moving. I slowly unpacked as I was able. Many boxes still not unpacked. Need to take a lot more to good will. Glad you're done now though, except for "maintenance".


#42

MAINTENANCE! COME BACK! COME BACK! I wonder if your downstairs neighbors have been leaked on from the ceiling. You have to laugh, or you'll cry.

Ann A. said:

Rita you need a laugh! After maintenance came over to talk about Lake Michigan, I decided to take a bath. I turned the water on and stretched out to wait until it was ready ...

When I woke up I had Lake Erie and Lake Superior !


#43

Sorry, ladies. I was in IL for a doc appt. and then busy when we got back. I had to laugh at the tub fiasco. Oh Ann, what we don't do to ourselves without trying. Instead of relaxing you caused more work! I have been self diagnosing this morning. I am so tired of doctors that don't get an easy answer and just throw in the towel. It never ends for us, I guess. Thankfully, we have each other to share, cry, and laugh!! Gentle hugs to all.


#44

That's a great option! Been sitting with Mom as long as possible each day but it's not as long as I want. She was so out of her head and violent and paranoid the first day from bladder infection and dehydration. It can do that in the elderly. I was nursing symptoms of eminent heart attack for the next 24 hours from the stress. Chest, arm, jaw, neck pain. I had the usual meds they give at the E.R. and my heart has stopped often due too tachycardia, so it's not a big deal for me. I had people pray that her delusions would be of nice things. not fearful paranoid things, and it happened quite quickly. Dr. came to her room yesterday, he's very young and new, said it looks like her body is shutting down, asked the procedure in a nursing home for palliative care. The nurse said not to give up on her yet because she always bounces back after an infection is gone. So I'm not sure if she might "go home" this time or not. I wish I could sit with her 24/7 but my heart problems don't allow me to do that. Avoided the heart attack but my oxygen goes down to 84% and I don't have transportable oxygen, then all the other lupus problems and diabetes going out of whack from the stress, etc. Feel so bad I can't be there with her all the time if she is dying. Hope you have a good day.


#45


Thanks Ann, I needed that reminder.


#46

Wow, Sheila! You have way too much going on in your life but it can't be changed. I am so sorry that you have been dealt this hand with your own problems but then trying to be there for your mom sure complicates more. You are a good daughter and obviously love your mom very much. You will never regret doing as much as you are doing for her but you also have to remember you have your own limits. When she is gone you will wish you had done so much more and forget the reality of what was happening. !y sisters and I went through this with our mom after she was gone and remind each other the reality of then. I did not realize the enormity of your health situation so I will keep you in my prayers too. My heart goes out to you.

Ann, I hope you have everything clean soon. I think you will find even more relief living in an apartment more as time goes on. We had another massive storm go thru here again and trees are down, streets and apartments are flooded. This is just within this complex of 2500 apartments. And the complex is taking care of everything. We are fine in our apartment but others are getting help. No one is having to pay for all this except the complex. That is so different for us too.

Ity


#47

Oh Reet I'm glad there was no damage to your apartment. Thanks for your prayers. I just moved to an apartment 3 months ago and WOW am I ever relieved at not having to go out and turn on the sprinkler, pulling weeds, cutting grass, and shoveling snow! So all 3 of us are feeling some relief from our apartments.


#48

I have a dressing area and bathrooms without windows so I feel pretty safe. We get tornadoes but having been through a few I know what to do. I miss my driveway and garage but there are always pluses and minuses to everything. I hope you both are having a good day. Sheila how is your mom doing?


#49

I so understand that feeling, Ann. I think I have said that my sewing room is not organized at all and it drives me crazy but I feel to lousy to deal with it yet. My husband has rearranged the kitchen to his way since he cooks the most that I can find nothing and there is no rhyme or reason to itl Sorry if I have said this already.

The doctor was disappointing. He has no help for me to feel better, nothing to offer, he thinks that my short of breath problems are spasms in my esophagus. Nothing to do for that. Etc, etc. So, 4.5 hours driving one way and 5.5 coming back for a 15 minute appointment and no answers has me feeling defeated. He didn't even say when he wants my bloodwork done again. How often do you all have yours done? I am looking at a rheumie I found on the internet that has excellent reviews, specializes in Lupus and Sjorgrens and is only 97 miles away, An easy day trip. I have been on the SS group too today and have learned so much about the bowel and bladder issues I have been having for over a year that not one doctor told me had anything to do with SS. I have asked several doctors about it and no answers at all. I know now why things aren't working...colorectal surgeon told me I have no muscle tone at all left but he didn't know why either. So many specialists and no one can look at the diseases or syndromes i have and tie it together. I am disgusted.


#50

Wow, so sorry reet. Maybe it's good that he wasn't much help so you won't have to make that long trip every month or more. Hoping the new rheumy is more helpful. I have sure found that doctors DON'T know about every symptom though. They only know what they read about and patients don't write the medical journals. I had one friend with lupus and MS who was sent to the Lupus Center of one of the major research hospitals. It took thousands of dollars to get there, and the Dr. told her that lupus doesn't cause any pain!!! WHAT THE HECK is she doing in that position of power?? Inflammation causes pain. That's simple enough to understand! *Shaking my head*


#51

I am going to pursue seeing the doctor down by Indianapolis. I don't know what was up with Dr L in IL. He had an intern with him so maybe that was it. He wasn't his usual self that is for sure. I think sometimes I expect too much. I can't tell you how often I have heard from doctors that Lupus doesn't cause pain. They are so clueless. I wish they would do research like we are forced to do because I don't believe they are doing enough in depth studies about each auto immune disease. I have had two "old fashion" type doctors tell me that the medical schools are not focusing like they should on a lot of things they should. They are disgruntled like we are.


#52

I have been reading that the big pharma companies are the ones who fund medical schools and make their curriculum. They didn't teach that fibromyalgia was a real disease because there was no expensive drug for it. When 3 expensive drugs were developed, they started teaching that it's a real and disabling disease. With lupus, they teach that the inflammation can destroy internal organs, and that the biologic/chemo infusions will slow that down. The pain, however, just has a very inexpensive medicine that is hard to access, so they don't mention the pain. I just read an article yesterday that said that people on prolonged treatment with chemo and biologics still had disease activity, so it doesn't help that much anyway. They teach about diseases that they have drugs for. Everything else doesn't exist. One example is Lyme disease. The only doctors who know about it are those who have studied it on their own and know that there are a lot of co-infections and viruses that are just now being discovered, but they won't teach it in medical school because there are no drugs for that yet. The tests are just being researched for approval now.

One Dr. told me that they are taught half a day about pain medicines in 7 years of medical school. They are not even taught the difference between addiction and dependence, so many doctors call ALL people who are in severe pain, addicts and drug seekers. Those who become pain control specialists did so by studying pain on their own.


#53

That also explains why there isn't any teaching about natural treatments.


#54

Exactly. You can't patent herbs or supplements and keep them only with one company, so there's no money to be made on natural remedies by big corporations.

Doggie said:

That also explains why there isn't any teaching about natural treatments.


#55

That is one thing about socialized medicine in some of the European countries. They are investigating herbal and natural methods because they are cheaper.


#56

I see logic problems all over this, ladies. Particularly here: "there's no money to be made on natural remedies by big corporations". On the contrary, herbal remedies are big business. See, for example, http://www.csicop.org/si/show/herbs_are_drugs/ I would like to point you to this paragraph:

"There have now been large, double-blind clinical trials of echinacea and cold symptoms (Barret et al. 2002; Taylor et al. 2003; Turner et al. 2005), Gingko biloba and memory loss or Alzheimer’s disease (Snitz et al. 2009), black cohosh and hot flashes (Newton et al. 2006), saw palmetto and benign prostatic hypertrophy (Tacklind et al. 2009), and others. Even St. John’s Wort, which is supposed to be a big herbal remedy win, has been shown to have no effect on moderate or severe depression (although the jury is still out on minor depressive symptoms; see Hypericum Depression Trial Study Group 2002). Many of these studies were funded by the National Center for Complementary and Alternative Medicine (NCCAM).

Despite this string of negative studies, the herbal remedy industry continues to rake in billions of dollars every year. Large, rigorous, and negative studies seem to have little impact on the sales of herbal products overall (although they may affect the relative popularity of specific herbs to some extent)."

I have no connections to big pharma, but I will tell you that the sweeping and inaccurate generalizations I see here are not only insulting to those in the medical profession but are generally harmful to members of this community. Your lyme disease example is particularly uninformed, Sheila. We have members on that community who have been seriously harmed by alternative practitioners who have invented their own laws of science and are essentially experimenting on their credulous patients.

This double standard of condemning the medical community and big pharma as profiteering while extolling the virtues of a profit-driven "natural" herbal commercial empire has nothing to do with support and will not be tolerated on this community. Subsequent posts of this kind will be deleted.