Life With Lupus

I am still here


So it's been a pretty miserable year and a half. But I am still here. My right arm and shoulder appear to have taken the brunt of my fall in late February. This has dramatically slowed my writing. My list of medical problems is boringly long. But then I am a 68 year old woman whi has been fighting auto immune diseases since she was 10 years old and lupus since 21. But I am still here. I am in physical therapy, again. I am still preparing to move. I still refuse to take hydrocodone. My biggest complaint is that I have a rash and cannot get in the pool. I can see the other side of this crisis and I plan to get there. When I get to the other side I will share how I managed. Never give up.


Welcome back & sorry to hear that your having such a rough time.



So sorry Ann! Interesting to hear there is therapy for the concussion. Sure wish I was offered that. 3 concussions in 1 year and now post concussion syndrome. How's the move going?


I have not been on here for a long time due to many things but mostly due to severe depression. I was on cymbalta and lyrics plus a couple of other anti depressants and I ended up with serotonine syndrome. I finally realized that maybe drugs were causing my problems and I researched it and started tapering off of them. I went to see my PCP and had !y hubby go too. What a mistake that was. He actually yelled at me and told me I was nuts and was badly in need of a psychiatrist. We could not believe how he treated me. He then said maybe I needed an internist instead of him due to all my problems. I was so angry with him. My hubby was more angry then I was. We could not believe how awful he was. So, now I am driving 4 hours to IL to see the internist I had there and he is wonderful. I am doing much better. I have experienced severe fatigue again and I think I am out of that again.

Ann I read that you have had a lot going on too. I truly hope your move will go smoothly and you will get the perfect dog. We moved into an apartment last November and it is good. We look out over a golf course and it is really pretty. The complex is big and all ages live here. There is 5000 or so people here. We asked for handicap stools in the bathrooms and we got them. All problems are taken care of right away and the workers are so nice. I hope you have good experiences too.

I really have thought of everyone here the past few months and I hope you all have a wonderful summer.


Is balance an issue for lupuies? I have terrible balance anymore but then I have neuropathy from my waist on down. Ann I know that I am lucky to have the husband that I do. I thank God for him everyday. I wish everyone had a wonderful spouse. I also recognize that in some ways life is more difficult for him then it is for me. I am getting more concerned everyday that I will need a scooter of some sort for going out. I have limited myself quite a bit already to being able to go out. Quilt shops around here do not have handicapped access either. PT has never helped my balance either. Good luck with your packing and the move.


Yes, the old school just says to rest and heal when you have a concussion, but for the rich or the athletes, the high tech equipment comes out to aid faster healing.


That would be wonderful if your daughter could supervise and your sons and grandsons could move things. I am still recovering from the purge of Mom's 80 years of stuff. My moving day was good. I didn't have to lift a thing. Just told the movers which room to go to. Boxes were marked with whichever room they belonged in. I still can't lift boxes, so I open a box and put away the things in the box, then flatten the box. I'm still so involved in trying to advocate for Mom, the most complicated patient they have had in years, that I don't even have my pictures up. I guess most of it is because I got terrible vertigo due to inflamed blood vessels in my head, so looking up to hang pictures throws my balance off. Much of the time (before I found krill oil that helps the inflammation), I could barely lift my head. Oh well, a few boxes left to unpack or donate. They say we usually bring too much stuff to the new place we go to. Then we learn there are a few things we need in the new place for better functionality.

The test of standing on one foot, I would think they would think that it will probably be hard just after a concussion, but after your brain heals some, then if it's still a problem, then things can be done. My post concussion problems didn't have to do with balance though. I am aware of the athletes suing and not knowing the dangers of repeated concussions, but I saw a documentary where there is now a treatment available, but very expensive. It looks like an MRI machine but just for your head, and some type of healing rays are directed to the brain to encourage faster healing. They also use hyperbaric chambers and even a nano chip on the damaged area of the brain. There are also computer programs that have you do various tasks that improve your brain function after TBI (traumatic brain injury). I think these will become more available as time goes on. That's interesting to know that there are pool exercises that can help heal the brain. Yeah I agree. How stupid to have to go to an appointment for that test. That could have been done in the Dr. office if she wanted to document that you are having a problem with it. Post concussion syndrome can last for over a year, so yes you can still get improvement, but you are very busy with moving.

NO they don't understand that with lupus we don't have the strength to keep hopping like they want us to. It felt like a full time job at one point, and I also had to tell my Dr. I am not even well enough to get to all the appointments she was making for me.

Thinking and praying for you often. It will be a relief to be done with the move.

Bless you!



OIC about the pool exercises. I was told that PT won't help in my case, where the brain's blood vessels swell and cause various degrees of dizziness from hour to hour, but the natural anti-inflammatory I found has helped a lot and I expect it will get better with continued use.


My vertigo and my concussion are 2 different things. Concussion was a year ago, vertigo started 2 months ago. This town's medical care is so negligent, people die from it all the time. Canada does everything possible to save money because the gov't foots the bills. If I had money and could pay for the treatments and go to a bigger city to get them, I could get them. Those who are on disability here get worse care than the general public. I've seen it happen many times. One time I was taken to the ER after a heart attack. There was a person in the bed next to me who also had a heart attack. They admitted her for rest and rehab. Then the Dr. came to me and said "So the MI is over now, so what do you expect ME to do about it?" Same idiot another time, when I was there and my heart was stopping due to severe fast heart rate/tachycardia, he used the paddles on me once, then he said in front of staff and everyone "If her heart stops again, I am NOT restarting it!" I was denied a pacemaker and other treatments that other people get, and was even kicked out of 2 doctors offices because they knew the gov't would not allow them to give me the treatment I need. The nurse of one Dr. told me the reason. The other Dr. just threw a fit and yelled at me and insulted me. He was a new Dr. and I think I was his first patient where the gov't told him he wasn't allowed to spend a lot of money on my treatment, so he just lost it. I have avoided the medical world as much as possible for a couple of years except for refills of my few meds that I can tolerate. I find natural and alternative remedies. Medical system has abused me enough. It's like having an abusive husband but you know you have to go back and get abused again because there is no other choice. Our town's medical system was small and narrow minded and all stuck together in wrong decisions and practices until about 2 years ago when we got almost 100 new doctors. It's better now, I hear.


It looks like so much fun though. Wish I could afford the aquatic centers locally. I agree that being active will keep you healthier physically and mentally. Going to the nursing home every day has made me investigate everything I can do to stay out of a nursing home.


SO FRUSTRATED for you and for most people in the states who have these issues. I lived there 20 years, had a premature baby, our 20% of the cost bankrupted us. Frustrated about the new health care laws there. I learned that USA was not the land of opportunity if you are sick.

Ann A. said:

I am on Medicare. This means that the federal government pays for much of my health care. I also have supplemental health insurance as a person who retired from working for the state. I pay a pretty steep monthly premium for it. My coverage for medicines is awful. Technically it is a medicare advantage plan but the pharmacists call it a medicare disadvantage plan. They have me in a catch 22. I can drop the drug plan for state retirees, but only if I also drop the vision and dental.

Medicare pays a limited amount of money for PT each year. I don't know how much my supplemental covers.


Oh Ann, I am so sorry to read that you are going through all this at once. I have moved so often and even with great health it is a horrid thing to do. Sending you healing thoughts. Rita


That is hard work packing books and vinyl. I have done that more times then I like to think about. Finally gave up the vinyl several moves ago. I know how hard it is to keep pushing. We moved last Nov. and we had lots of help and we are still not completely organized. Most of the time I don't feel good enough to care. Gentle hugs dear Ann.


I'm so sorry this was made so much harder by your back and by the stress causing more inflammation. We sure do push ourselves hard, don't we? My vertigo is controlling me, and it's frustrating. I'm surprised that you are allowed to paint an apartment anything but white or beige. My new little place has colored walls and I love it. It's been the first place I've lived in with colored walls since I was 12. So sorry for the delay. Make them supply the drop cloths to cover everything.Glad they can do it tomorrow. What wall colors did you choose? You're still in my thoughts and prayers. I hope the hydrocodone will help, but at first it does make you sleepy or loopy until you get used to it.


I wish I could paint my bedroom turquoise too.You're a colorful person in every way!


Wow! Amazing!


Ann. I am glad to read that the apartment will come together as you wished and that you have a pain management doc lined up again. Those epidurals can really be life savers. Love the colors you picked out for the apartment. We have not painted anything in ours yet but we do like it anyhow. No work to handle is great. Something goes wrong and we contact maintenance. So far it is good here. Good luck on the rest of packing. Hugs!


I have prayed this morning that you are moving into your new apartment or the painter is in there painting for you. I'm not sure when you have to be out of your house. Why oh why does this type of thing happen way too often to so many people? I can't believe how many people retain their jobs when they or so incompetent. I have read so many horror stories about apartment living and (knock on wood) ours has been the very opposite. I so hope that once you are settled that your experiences in your new home will be positive.

My heart strings are always tugged when I think of those of you who are dealing with everything by yourselves. I feel like crap but I have a hubby who cares and does take care of things so well. I thank God everyday for him and then I ask God to help everyone who are not as fortunate as I. I have been feeling too sorry for myself this week. We were gone 4 nights to watch our grandson play baseball. Saw two games and stayed with our son part of the time and with friends the other part. I slept most of the 4 hour drive home and have been down since that trip last Tuesday. The fatigue has been over whelming and the pain most days has been pretty bad. I am not sure why this trip was so bad except I was out in early evening sun and I rarely am out in sun at all. Does anyone think that this could have done that to me? I never know what is kicking my butt...lupus or Sjorgren's or fibromyalgia. BUT, I have help and I remember to be thankful for that.

Good luck, dear Ann. You are in my thoughts. Gentle hugs, Reet


Love this. So many things to do with this color.


I was thinking of you being alone more in the emotional and mental everyday sense. I know you have your kids and the grands. We also have sons that knock themselves out for us. There are so many people here that are alone in so many ways so I was being all inclusive. I am glad you have all the help that you do. It is good to read so many have helped. It restores our faith in the human race.

Ann A. said:


Please do not think of me as being alone. Remember I have a 48 year old son who taken full responsibility for dealing with the realtors and the banks in regard to this house. He took days off from work to drive me around to look at new places. He plans to move me with the help of his sons.

His daughter who is home from the university for a few weeks came over to help me pack my clothes - the dress up stuff - some of which is older than she is. But she understood which pieces went in a box and which pieces went in a trunk and which pieces went in a garment bag.

I am not alone.

My daughter is 42. She works full time and has two small children. Boxes and bubble wrap have appeared on my front porch and two little girls have come to hug me. Sunday dinner have been brought to my house. She is going to help me clean this place when all of my belongings have been removed.

A young couple from church with six children (they call them helping hands) have come twice since I started the packing process. The last time the guys moved boxes from the family room to the garage so that I could have a place to put more boxes. The girls packed my china and my serving dishes (special cause my son bought them for me soon after he graduated from college and was the manager of the furniture department at a JC Penney).

The teenage girl who lives next door comes when ever I call. I pay her. But she would help me even if I could not. There are so many other people who would help me. However, when more than one other person is in my space, I feel crowded. So, I am no more alone than I prefer to be. I do have help. It would be wrong of me to suggest that I do everything on my own. I do not.