Main » Life Changing Ajustments
May 18, 2006
How to cope with fatigue??
I can still remember back in my LBL (life before lupus) how I would bounce out of the bed as if I was on springs. I long for those days every day now. It seems like it takes me soooo long now to get out of bed-between being too tired to want to get up and too swollen to get up easily-it is just nothing like it used to be for me. I get in these moods where I throw myself a pity party every now and then and simply long for the way my life was. It is not good for me to do that and I know that but sometimes I can not help but to feel sorry for myself, my children and my husband when I think about what they lost as well as myself. I try so hard to keep things close to normal but somedays it just seems like too much. It is hard for me to know what the right answers are-how do you deal with being so different than you were? I try to make jokes alot like I bet it is easier for lazy people to gert lupus because they never want to do anything anyway-LOL. But the truth is it hurts sometimes. I can not believe this is my life-I keep waiting for this remission in which lupus may never rear its ugly head again but so far that is elusive. I have some really good days but they never seem to last and it is worse by people who say stupid stuff. We know who these people are they say "I can not believe you are having so much trouble-my aunt has lupus and she is fine" or they say "Maybe you are not doing everything your supposed to, my cousin has lupus and they never swell up like you are" just stupid stuff........................................it gets on my nerves!!
I have to close tonite at work and then open in the morning and I am already exhausted beyond belief right now-too bad I can not just sleep for about 40 hours-that is what I think I need.
The fatigue is so bad sometimes that I just want to lay down and not have to get up. If anyone with lupus has some useful tips for beating the mind-numbing fatigue PLEASE share.
February 20, 2006
Ugh....I hate mondays!
Used to be I would bounce out of bed ready to start the day, now I don't. I used to wake my kids up by singing (what an annoying mother-lol) now I don't. So many changes in my life and I do not even realize how much my life has changed until I stop and think about it-too much!
I want to learn how to live happy with this illness. I wish I could just wave a wand and feel better about it, but there are no fairy godmothers and no magic wands so I am going to have to find it in myself to not let this get me down. I am too sensitive for my own good sometimes and that does not help. I do not think why me though, I think why not me, others have it alot worse than I do and they manage to cope and stay sane. I envy people who can rise to every challenge life hands them, maybe one day I too will be able to do that? At least it is a great goal to have.
February 04, 2006
How much blood does our body hold? LOL
Yesterday I had to have 30 tubes of blood taken!! I could not believe it. It took two employees and two needles going to take that much blood. My arm is still sore today :( But at least this rhuemy wants to find out step by step what is going on with me so that is good.
I am going through the prednisone withdrawl which is awful no matter how many times on it-it seems so hard to wean down-fever goes back up, mood disturbances are rampant, and I feel like crap.
Not a lot to update today as far as how I am feeling or anything-feeling pretty yucky and swollen, and feeling a little tense over the blood work-up but otherwise ok..................
October 09, 2005
Long time no see
Hi all, it has been a long time. I am trying hard to adjust to life in Naples and I have been having some health issues (as you might imagine)lupus does not take a vacation I am finding.
I went to the eye doctor here (needed new contacts) and she found 6 lesions on my right eye on the retina. She wants me to go see a retinologist however I like many americans, have no health insurance and certainly not enough money to go to one, so I do not know the full effects of the lesions on my eye.
There is not insurance offered where I work now so I have been without my meds for over a month now and it is getting worse daily, yet there is nothing I can do. We do not qualify for medicaid (too much money) and we have no insurance offered through our jobs. I have a chronic condition so we can not get a private policy-any suggestions would be greatly appreciated. This has really been alot worse than I thought it would be.
When I was first diagnosed alot of my friends felt bad for me and I told them-don't feel bad for me, I have great insurance,unlike most americans, and I have great doctors to help me. Now I have neither and it is scary to have a chronic condition and no way to get treatment of any kind.
I have no pain meds, no anti inflam meds, no thyroid meds-nothing. If I ever wondered if I needed to be on the many meds I was on, that question has been cleared up.
Other than that the kids and the hubby seem to be settling into Naples real well. We are doing pretty good as far as adjusting and I think my mother in law is thrilled to have her only son living in the same town as her again. It has been really hard on her since my father in law passed away and we are happy to be able to be here for her.
I will try to update more frequently but it is really hard-my hands hurt just from this little bit of typing and I am weak from sitting up. It takes all my energy to go to work-my house is in shambles and everything else falls by the wayside-right now every ounce of energy I have is used to go to work-need the paycheck LOL.
Take care everyone and namaste!
July 08, 2005
My mothers health
Hi all......has been a long time....will not bore you with all the details as to why, but am asking for your help.
My mother has COPD and is getting worse-there are some clinical trials going on in various locations but they do not want to take her because she had the upper lobe of her right lung removed several years ago. They do have a stent that they can put into the lung that will improve her breathing thereby improving her quality of life and hopefully prolonging her life.....I am pasting a copy of the letter that I am faxing to Senator Clintons office in the hopes of enlisting her help, I have also contacted pulmonary medicine at UNC in the hopes of getting their attention. Any other ideas?
All of us have had to deal with our various health problems and I thought what better place to ask for help? Thank you in advance for any help you can offer or any suggestions of whom to contact-if you want more information feel free to email me.
To whom it may concern:
My name is Lisa Kaelin. My mother has COPD which is a devastating lung disease. I am only now becoming educated in regards to the insidiousness of this illness.
In September of 2001, at the Miami Heart Institute, my mother had her upper right lobe of her lung removed. They were only supposed to remove it if it appeared cancerous-it did not and was not, however they removed it anyway stating to her that they did this in case it would have became cancerous later.
There is alot of research going on regarding COPD and ways to treat it, and a very promising treatment involves the placing of a stint in the lung to help keep the airways open. My mother would not only benefit from this procedure but alot could be learned from her in the area of how to take care of these patients who have had prior lung surgery as well.
My mother has literally had to fight her entire life and has reached a place where her life is calm except this area. For eighteen years she was a battered woman, living a life of fear. Finding the courage to leave with my brother and myself was one of the hardest decisions she had ever faced. I had demons of my own that I had to deal with and that resulted in her taking care of two of my children to this day-she has given so much of her life to others and to help others and she deserves the chance to benefit from this trial.
I do not reside in New York State, I do however reside in the United States and know from her eight years as First Lady, that health care and equal opportunity for all to the best health care is a cause that Senator Clinton is passionate about, it is my fervent hope and prayer that she will if not intervene on my mothers behalf for her to be able to be part of this trial, then at least advise me how to proceed to get my mother the chance that she needs. Her doctor told her recently that he wished all of his patients would fight this disease as hard as she has. She still is active with her church and her family and would love to be able to be even more active.
There are many people in this country going without the health care that they need and I know that, I wish there was something I could do to change that, but I can do everything in my power to change the health care that my mother is getting. Allowing her to participate in this trial of the stints would not only benefit her but would allow the doctors the chance to study someone who has this particular problem with the upper right lobe removed.
If you personally can not help me, can you suggest other avenues for me to persue?
June 20, 2005
Life, love and fury
I have been stuck at a dead end job for ever 5 years, one which I came back from medical leave to be treated like I was suddenly incapapbe of doing my job. I have stuck it out for whatever reason(just a glutton I guess). Anyway the insurance company watns me to go to work for them-it is dealing with people which I love, it is sels which I love, and it is NOT BEHIND A DESK which I hate being chained to a desk! I am not a desk monkey! I am so angry because my book will be here tuesday and I already have a presentation scheduled for July 1st even though I am not totally licensed yet which is why my boss will be in charge of it even though it is mine through my contacts.
All of this aside I said to my DH that I was going to put in my two week notice today and he acted like a horses ass!! He has been through numerous jobs since we have been here and I have been at the same one the whole time-all I am asking for is his support but he can not give it. This has caused me to rethink my marriage as well as my career.
I am sick-not dead and dammitt I do have a say in how I run my life. My job now is the most stressful event in my life with my husbands lack of support a close second!
HELP-I feel like I am falling with out a net................
June 11, 2005
Pedicure, manicure, wow-I feel like a girl!
I won a contest at work and was given a gift certificate to a local spa here, so this morning I went and had a pedicure (first one in my life) and a manicure. Talk about a wonderful way to start the day! I feel so girly and feminine. It was wonderful and relaxing.
That made me think of all the times we do not take time for ourselves though. If you are a wife and a mother you especially know what I am talking about. Seems there is a guilt factor involved with doing anything for ourselves. I called my mother this morning to tell her what I was doing and the first thing I said was "it is free" why do I feel like I have to explain that? It is odd how women have no problem spending money on their husbands and children but when it comes to themselves it is different. I work outside the home, I work in the home and yet I feel as if I am not supposed to do anything "nice" for me. That is the way alot of my friends are also. I think having lupus and already having to have so much in terms of medicine and time off for doctor visits makes me feel like I am not really entitled to anything "nice" for me since I require so much as it is. It would be interesting to hear from other women if they tend to feel the same way?
Keep smiling-namaste :)
May 21, 2005
Saturday and all is almost well
Hi all! Hope everyone is doing well.
I am going to get licensed to sell life insurance, I really need a career change and I think this could be the one.
Now if I could just get my husband to move me back to florida I think I would be on the road to recovery. I want to go back so bad. I am tired of living in this red neck ignorant area. The people around here literally are what is making me sick I think.
My coworker/friend/ex friend and I are DONE! She was definitely instrumental in me getting sicker as I could not deal with the stress of being in a toxic relationship with her. It has been so hard for me to not have her in my life since we have been friends for so long (32 years) but I had to finally realize that she is not my friend I have been her friend but it has not been the same. She is so angry at work because I have been slowly getting my job back and she acts like the fact that I have so much seniority on her and the fact that I got her the job are irrelevant. She just thinks only about herself and that is all she has ever done. But anyway, I know for sure I will be emotionally much healthier without her in my life so that is the most important thing to me right now.
I have also decided that I am going to quit smoking. I am so scared, because of the weight gain and the stress ( I do not want to set my self up for another flare) but at the same time, I know quitting will benefit me in the long run.
We just celebrated my fathers 60th birthday on wednesday. I can not believe my parents are getting so old, I remember being a child and thinking I would never grow up and get out of their house with all their rules and hypocrisy but now that I watch them get older I can not believe these are the same people who made my childhood a living nightmare. My mother is on oxygen and my father has to have veins removed from his leg next month. They are both sickly and slowly suffering. As my parents I do not want to watch this happen, as their victim for many years I am realizing the truth behind kamma or karma as some call it.
I have been doing an online course regarding the noble eightfold path (Buddhism) and it is helping me so much on my own personal path to enlightenment. I need to be more involved in the dhamma center in my area, that in itself will help me take the focus off of me and how I feel and place it where it should be-helping others.
Sometimes we get so caught up in our own problems that they tend to become larger than what they were if we had not let them take over so much of our lives. I am so guilty of this on numerous occasions, now I am trying harder to focus on what is important and on what is permanent and what is impermanent.
Have a wonderful day everyone and NAMASTE.
(Namaste is the pali word for I honor the light in which you shine) I think it is a beautiful way to say goodbye to someone.
May 16, 2005
Long time gone :)
Hi all! Have not updated in awhile, to tell the truth since being back at work and caught up in all the hostilities it has been very hard on me, physically and emotionally. I pushed to go back and I was ready to go back, I guess the office politics was something I had not anticipated. I was happy to go back and everyone seemed happy about it but now they are more concerned with pushing their own agendas.
I did get an interesting job offer and I think I am going to go for it. It is selling life insurance as well as other policies designed to make life easier in the event of a crisis. And with as many health crisises as I have endured the past year and a half now, I know how very important it is to be financially prepared. Of course we weren't and we are still trying to recover from it and ope to before I have another bad flare.
There have just been so many things going on and there is just too much stress for one person to handle sometimes.
That is about it for me tonite-I am tired and I just want to lay down and take a break.
Keep smiling :)
April 29, 2005
Maybe maybe maybe
Yesterday I got the call I have been hoping to get for quite some time. BCBS wants to do an interview!! Not only is it better pay, less stress, less hours, seriously good benefits, but it is away from the betrayal of my father, so please everyone keep your fingers crossed, do a meditation or say a prayer for me whichever works for you. I would appreciate it.
My interview is next week so last night I practiced hair and make up and what I am going to wear and am researching ICD9 codes. Those are the codes the insurance billers put to get insurance companies to pay. Knowing them is not a requirement but I am hping to learn enough of them to be familiar with them so I can gain an edge on someone else who may also be as qualified as I am.
Any other suggestions on how to give someone with a chronic illness the edge over their competition would be wonderful.
Keep smiling and have a nice weekend.
April 25, 2005
I can not do it
The tempature dropped and my fever and swelling came back and I am at work in tears because I am finally accepting that I can not do it.
This is really hard for me to admit, and even harder for me to swallow.
I do not know what to do at all.
April 01, 2005
April Fools Day
Happy Aprils Fools Day!
It has been raining here all day long and miserable. The cold and the damp make me hurt twice as bad as a "normal" day.
I am hoping to get back to work soon as my finances can not take any more time off. It is a catch twenty-two-the doc wants me off work so that I can focus on getting better, the utilities do not care that I am unwell, they want money, I can not get better unless I reduce the stress in my life, I can not reduce the stress when there is less income-a vicious circle indeed.
I have been atempting to get my associates degree in health care management and so far my GPA is 4.0-yipee yipee!! That is exciting for me. I have decided after I get my degree, I am going to continue to advance my education and go for my masters in business administration. My husband was afraid that would be stressful for me but one thing I have always loved is learning so this is exciting and not taxing on me.
One of the reasons I chose health care management to get the associates degree in is the amount of hoops one has to jump through any time they are dealing with health care issues-I have decided I want to be part of the solution instead of complaining about the problem.
I hope everyone had a wonderful Easter, mine was not too bad. We went to my fathers house and it was nice to be there as a guest and not a resident :) This was my first trip back out there since we had to live there and I think it was good to give them and me the space we needed so it was a pleasant visit.
I am tired and have alot to do tommorow just wanted to do a quickie update.
Keep smiling :)
March 24, 2005
It has been awhile :)
Hi all sorry it has been so long since my last update-I was having computer problems then when I got those resolved I was having problems with this site-thank you Traci for helping me get back on track :)
I am still home on medical leave from my job-I go tommorow to have more blood work pulled. If it has came down then they will consider letting me go back to work-if not then I am still home :(. At first I was feeling so crummy that being home was not too bad. I still have days where I am glad I do not have to get up so early and I am grateful to be home but mostly I want to go back to work. Me being off is causing some tension in my home as my husband is resenting me being home all the time. I do not understand that at all. He acts like I am just being lazy. I do notwant him to feel as bad as I do but there are times when I think if he had to feel like this for as long as I have-he would whine way more than I do plus he would not be doing all of the home care that I am. It is odd-we got into an argument about it the other day and I am upset because he has three sisters and none of them work, I have only been home for a little over a month and he acts like it is a crime.
I signed up to take health care management online college courses because with a degree that will help me make more money if not at my current employers then with someone else. So I am taking college courses, working part time from home, and taking care of the children and the house so really I am just as busy if not more so than I was when I worked full time. I am just better able to pace myself now than what I was before.
I think part of it is the money situation. We are still working on our first million (LOL) and this definetly does not help. It is hard financially and emotionally for me to be off work this long. It is hard for me to deal with at all because I hate to admit anything has me "whipped" but at the same time I know and have finally accepted that part of the problem is I do not listen to my body at all. If I want to get better or at least come to some form of acceptance of this illness then I have to make better choices as far as listening to what my body is telling me. I am happy to say I am doing that-when my body says nap time, I do not even fight it anymore, I stop what I am doing and lay down for a little while. This has been a wonderful discovery for me. If I do that for my body then my body repays me in kind by having more energy when I get up and by letting me do more instead of dragging through the day unable to complete anything.
Back to work I go-I am working part time from home and this has been a big help also.
Until then-keep smiling :)
March 10, 2005
I am tired all over. My mother has been in the hospital all week and it is really hard because she needs me as most of my family is contagious and can not be at her side. This coupled with the fact that I have been feeling good lately until today. Today I have been achy, sore, fevered, flaring again,tired and just gneral maliase.
I was reading an article regarding lupus and epstein barr virus. It does seem like a lot of people dx'd with lupus at one point in their life was also dx'd with epstein barr.
A couple of years before all of this started I was dx'd with epstein barr and I know how dragged down I felt-it was horrible. I felt so sick and weak and tired, yet it is noting compared to how I have ben feeling today.
Talk about depressing-I was thinking REMISSION, but now I am thinking-not yet :(
This is so depressing. I am not much in the mood for writing but I wanted to stop and briefly update everyone.
Keep smiling :)
March 06, 2005
Morning has broken and taken my back
Wow-I am hurting hurting this morning. Mostly my back which unfortunately you need to move very well-LOL.
My daughter is being a hair model in a hair show today so I thought that would be good for her but now she wants me to stay with her the whole time (she is doing for a good friend of mine who has babysat her even) and I am not so sure how I will do at the mall for five hours-the lights are going to be the hardest part I guess. But we do things for our kids that no one else could get us to do so this may be one of those things and it may be good for me to get out of the house-who knows. But I do not want to let my daughter down.
So anyway-off to the shower to get ready and take her-may update tonite or at least do a joke :) Laughter is the best medicine and it is free even after co-pays.
Keep smiling :)
March 04, 2005
Mixed emotional bag tonite
I woke up feeling pretty good again and was thrilled about that. Had a couple of visits from friends whos company I always enjoy and I was thrilled about that. Still felt pretty well, my friends oooh and ahhed over my bishops hat napkin fold that I perfected last night and it really was overall a great day. Then it went downhill-ever had one of those days where a day that starts out so promising suddenly ends so badly? If you haven't then welcome to my word and if you have you probaly already know where this is going.
Just went to the Cleveland Clinic on Tuesday-the doctor not a nurse not a receptionist but the doctor called me today. Some of my blood work apparently is not quite up to par and there are apparently now some concerns over my heart as well and I may have to see a cardiologist-we are going to wait four weeks run the blood again and then decide. So that brought me down, then I stayed up late to talk to my husband and we got into and arguement-mind you he argued while I cried and said I do not understand why he is talking like that-he said he was not going to "baby" me. Not to seem overly clingy but right now-I kinda need babied-I am scared, I do not want to have cardiac involvement with this-the stats on that are not too impressive to say the least. He ended up anging up on me then unplugging the phone there so as not to have to hear from me again tonite. I do not get it-I just want his support and love and yes to be babied-I want to feel cherished and protected right now-O feel alone and scared instead and that is the story of how my great day turned itself around.
Since I started this I have tried to be consistent and end with keep smiling however tonite I can not find one thing to smile about.
Oh wait-I just remembered my kids and my animals ok-Keep smiling :)
March 03, 2005
I feel good :)
A little James Brown anyone? LOL-I feel good and I knew that I would, I am having a good day, I feel good I feel like I will overcome the worst of these flares and I am feeling very optimistic today. I think I have caught up on some rest and that helps aswell as being able to work at home even if it is only for a few hours-I at least feel like I am being productive.
You know sometimes life is just hard-regardless of medical conditons or anything life just gets hard sometimes. I had a very good friend his name was Hans and he used to tell me some people were just too sensitive to live in this world as crazy as it gets. I think there is alot of truth in that. He committed suicide being one of the too sensitve to make it-this happened about ten years ago but I still think about im and that remark when life gets too hard. Life in itself is hard and when you have lupus or any other chronic medical condition it is easy to get caught up in it and let it define you-but today I am saying lupus does not define me it will not define me and I will stillfind things that I can do and enjoy and I will still suck every bit of life out of my life. I think I have reached a place of acceptance and am now ready to move forward and find a way to be me again just sowing the disease the respect it deserves but not allowing it to take over my entire life.
Keep smiling :)
March 02, 2005
What a relief to go to the doctor and be treated so well
I went to Cleveland Clinic yesterday and first of all left with a much better impresion of what rhuematologists are supposed to do secnondly left with a better respect for the medical profession and thirdly the doctor LISTENED to me. He said I do not have psoriatic arthritis-he said the dx was based sley on swollen joints and the obvious fact that I have psorasis. He said that I have fibromyalgia, rauynauds syndrome and he is pretty positive SLE lupus. He said he does not base all of his dx's simply on bloodwork as with auto immune disorders it does not work that way. He spent over an hour with me explaining the fibro, raynauds and what we are going to do to make a definitive dx of lupus-it was wonderful-he even wrote in my chart that I was physcoligcally (forgive spelling) sound!! He never thought it was in my head that alone made me adore im.
If anyone is near enough to Cleveland Clinic in Cleveland OH and needs a good rheumy I highly reccomend Dr John Carey. He really was a wonderful experience.
Other than that I have simply been sleeping alot, he explained that by saying with fibromyalgia you do not get restorative sleep-so you are always tired he is going to recommend to my primary doctor that she try amitripilyne at night (not sure if I spelled that right) but it is supposed to help with the sleep problems.
I am going to close here because surprise surprise I am ready for bed.
Anyway-keep smiling :)
February 28, 2005
Auction Auction read all about it
http://TheCelebrityCafe.com/auction This auction s being held in NYC to raise mney and awareness for lupus and lupus research-if you get the chance to be in NYC please attend if not try to forward the information to those you know in that area.
Sometimes the only thing we can do about the illness we are fighting is gather our strangth and fight back. This is one of those oppotunities to do so.
I get to go to the Clevelannd Clinic tommorow and be pricked and prodded some more-oh joy-LOL-I am sure I will update tommorow or the day after as I am not sure how I will be feeling tommorow evening.
Keep smiling :)
February 26, 2005
I feel like hell tonite
I hurt everywere still, have ben for a couple of days now, Tuesday I go to the Cleveland Clinic to see what they think and what they want to try with me. I feel like a guinea pig lately. Each doctor wants to try their own thing to "fik" me. Oh well-hugs and kisses to the winner!!
I am going to sign off now as I simply hurt too much not to.
Keep smiling :)