I will lose my job soon along with my medical because I can only be out for so long. My state does not offer medical assistance for adults. And what it does offer for children is not great but is something. Since so many ppl are too sick to work, I am wondering how people get insurance? I assume not everyone is married to have spousal insurance and private insurance companies would never take us for any premium. Any info greatly appreciated.
Hi Vicki,
Have you checked with your human resources department to see if you meet the criteria for FMLA (Family Medical Levae Act)?. This entiles you to time off, without pay if you don't have personal or vacation time, but at least you wouldn't lose your job.
Covering medical expenses without insurance is brutal. Sometimes you can appeal to the manufacturer for assistance and they will help if you qualify. You may want to try a Google search. Also, since this subject has come up before, maybe some of the members can help you out with some suggestions. Good luck.
Take care,
quiger
Thanks Quiger. I actually am on FMLA now but it will be over soon, before i have gotten better. And i worry about taking those meds when I start work. :(
Vicki, You would be surprised at the number of people that are working and on Prednisone, Immunnosuppressants, Plaquenil and all the other drugs that anyone with an autoimmune disease or any chronic disease takes. Now days there are not a lot of diseases that are totally untreatable. The main thing we take meds for as Sjoggies is to alleviate our symptoms such as the mouth and nose dryness, fatigue, depression and the bad heartburn of Sjogrens to name a few.
When we get sick we always think we are the only ones with health issues. I worked with a nurse since 1986 and she found out after the first few months that she had had a bad case of ulcerative colitis(another autoimmune disease) and almost died. She had an ileostomy when I met her and I never knew until she told me.
When a person has Sjogrens or any other autoimmune disease it is not uncommon at all to be diagnosed with several other autoimmune diseases. They seem to like to travel in a pack. It is entirely possible that your eye and ear problem are totally unrelated to Sjogrens and are another separate autoimmune disease. When we develop these diseases we learn to adjust out lives to cope. First we need to get the right diagnosis and treatment before we can even think about accepting what we have. I worked for years feeling extremely unwell. My hubby was on disability from his autoimmune disease and there was no way I could quit work. No one knew how ill I was feeling as I had to just keep pushing.
In regards to your losing your hair. It is extremely unlikely that this caused the autoimmune disease. The autoimmune disease causes us to lose our hair. Pretty much all of us have had a time or two with thinning hair. The asnwer is to buy a wig. One thing most of us have learned is our pride goes out the window when we have these issues. After awhile we just learn to adjust and live with what we have and work around the issue. There are no perfect people out there so having physical impairments are another bump-big or little as the case may be-in the road. My pride and joy was my hair and my nail. I have very thin hair now and will get a wig if need be. I always had nice nails and now they are dry with ridges and an overgrowth of cuticle etc and I can't wear polish except for the clear stuff for a day or two and that is about 1 -2 times a year.
My main concern over the years was being able to work as a nurse, mother and wife when feeling so lousy and I managed to get the job done but not without some suffering along the way. As far as the medical bills--they will always be there and you just get used to living with them. When you have the health insurance it is a big help. Most states have county offices with social workers and one needs to visit with them. This is where you can find out what programs are available. You have to get out and be proactive in this regard.
A positive attitude is really helpful in living with any chronic disease. If you are suffering with depression you can talk with your doctor. There are no perfect meds as far as the dryness goes. Everyone has to try a med and see how it works on their body. I used the Salogen(pilocarpine) and it works well to increase the dryness in the mouth, nose and I thought in my eyes also. Everyone experiences relief from this med in a different way. This medication stimulates the production of saliva.
The vaginal dryness is something to talk with your OB/GYN or your GP as there are products out there that will help. Some of them are the over the counter water based jellies and others are presrciptions.You have so many questions and I would encourage you to go as far back as you can on the threads and read all the posts. You will find answers to lots of questions and lots of ideas on how to cope. The important thing is to know that hanging in there is worth it and things don't always look bleak. There are good and bad times with autoimmune.
Also, like Quiger said, remission is an individual thing and everyone is different as well as their response to the meds that are used. There are no cut and dried anwers out there. We all hang in there and find things that work the best for us. One thing I did want to mention is that humidity is very important in the house where you live. When we run the furnace or air conditioner the humidity is pulled from the air. I run a humidifier year around and can't live without it. My eyes and nose get so dry without it. I continue to wish you luck.Irish ;D
You are much stronger than me Irish. I think if I can get the nausea under control I can find a way to work despite my painful eyes. Some people their eyes are mild, other moderate others extemely painful whereas something else may be worse for them with sjorgens. For me these eyes are out of control and dont get why nothing has worked like it has for others. My job requires I am on the computer all day whereas at home I can take breaks so my eyes dont completely get bad. But the worst for me is scrolling on the computer, turning my head, neck, using my eyes basically causes the nausea/light headed dizzy feeling i cant stand and that is the main thing that keeps me from working. i cant read things easily without being nauseus. And brain fog but we all have that. I think i may take the meds because i worry about hearing loss with this AIED diagnosis based on the blood tests. I did not realize sjorgens alone can cause hair loss? So it can attack the hair follicles much like alopecia areata? How often does this occur? I have no choice but to be back at work soon anyway so I dont lose the medical. I am glad i was gone though because being there I risk losing my job with all the mistakes I was making due to the nausea mainly. Not to mention the stress. I at least feel fortunate to have been able to take some time when not everyone can. But I still I had gotten better while I was gone. I realize most dont have that luxury but those that do are lucky to some degree. But none of us are really lucky because we are in this boat. Anyway, i admit, i am not as courageous as you or the lady you mentioned. I guess I wish if this was to happen that it happened when i was not this age and had the opportunity to have a family. Right now i feel alone. Its not because i want to burden my family but the idea of knowing at least i was able to do that because now i am in no position to pursue such things.
Viki I do understand where you are coming from. Most on here know that I am still working as a teacher(special education),and I love working with the kids.(Just not all the political adults) I have adjusted with my sjogrens a little more now. I was telling my rhumey the other day during my visit that I take one day at a time. I only see that day when I go in. He said that was a good way to look at it. Well , I just have to do it that way or I couldnt make it at all. Some days I am between classes while spending time in the bathroom with all the stomach problems. I carry somethign to drink from class to class. Some days I have become dizzy and my sight is horrible. Mostly it affects me at a distance . I just try to not think about it and know I will recognize who is out ahead there when He get there. ;D I have to do it all this way. Only if I am very very ill will I now allow myself to stay home from work. The other day for my rhuemy appointment I took off a half day,because I had only missed a bit since the beginning of the year. That past two years I missed weeks at a time ,and they almost let me go.I couldnt go ,because I would lose my insurance also. My husband is disabled and gets help with his meds and doctors ,but he doesnt recieve a monthly check.(long story). So I still can become overwhelmed when I think its all up to me. There are days I have cried too. I cant afford that much though ,because then I am more stressed out. I told God I could not do this without his help. He did help me. I am not trying to bring up religion to anyone ,I am just relating my own story. He also helped me to quit smoking 2 years ago. Well I hope this helps. I will write more later. Each of us though have our own unique circumstances. I dont know all of yours. I know your doing the best you can ,and that is all you can do.Tomorrow I may be applying for disability. I know that day will come most likely. I seem to enjoy the simplest things more these days. I wish you all the best ,and I will say a prayer for you. You just keep telling us how you are doing and how you are. :)
susanep
Susan, thanks for your post. What makes you dizzy? I am still trying to figure it out. I am dizzy and nauseted 24/7, no vertigo. Not on meds. Please let me know, thank you!
Vivki, Nausea is very common with autoimmune diseases. Also, there is neurological problem that occurs with sjoggies. This is related to our body knowing where we are in relation to the rest of the world. It is called proprioceptive disorder. I have this and bad at times. I have trouble with the computer and scrolling, turning my head etc. When I ride in a car and then get out I can be so out of balance that I have to stand and wait til the world catches up with me or my balance system catches up with the world. The strange thing is that when I drive it is not as bad. I think when I drive I look at the road and scenery differently as opposed to when a passenger I am looking all over and this increases the balance issues.
You need to see a neurologist also about these disorders. An ENT can't do a whole lot about a lot of our problems with the balance issues as many times they are not related to the ears. I would not be surprised if a lot of your ENT docs are not tuned in to the balance issues related to sjogrens. They are autoimmune related. I found that when I went on Prednisone my balance became better. You may find that the nause will decrease when you balance is better. I have awakened practically every morning of my life for the past 25 years with nausea to some degree and no one ever knew why. When I started researching autoimmune I found out why. Have you taken any medication for the dizziness? I just had a brain fog and can't think of the name of the one they have used over the years.
There is no reason to think about the how and why of losing hair--when we have autoimmune problems it comes with the territory. I have found that my hair thinning would be worse and then improve and I know it is in relation to our autoimmune disease and how it affects our body. You also need to have your thyroid checked really well and the thyroid is involved in a lot of autoimmune issues and just going on thyroid meds sometimes helps with issues.
Also, there is a drug called Provigil that is used to give a person more energy during the day. Many people take it with really good results. It works on some of the chemical receptors in the brain. You probably are in dire need of an antidepressant to help lift your mood and help you sleep better. Most people with autoimmune disease suffer from depression and need to take a med. An antidepressant may also help with the nausea some. Nausea is common with depression. The bottom line is you will have to take medications and the fact that they make the dryness worse will have to be overlooked in relation to the fact that most of the meds will improves your ability to cope and live a more normal live with a chronic disease. Salogen is a life saver because it helps increase our saliva production.
As far as you eyes---I am very concerned that you are not getting adequate attention to this problem. Yes, you have Sjogrens but the pain and other disease process you describe may not be related to the Sjogrens. It really doesn't matter what is causing these symptoms you need to get another opinion. Like Mike says find an ophthalmologist who knows about autoimmune eye disease. When you call to make an appointment ask if the doctor treats a lot of autoimmune eye diseases.
As far as me being strong---I am not that strong, but I am stubborn and I have refused to let this disease totally take over my life. I always told my hubby that I got more work done feeling crappy than a lot of people did feeling well. Another issues that needs to be addressed is your job. Many people with chronic disease have to make a choice in changing careers. This is not the end of the world. It simply means that there is probably something out there that you will be able to do without messing up your eyes on the computer. Right now you are overwhelmed by your illness plus you are freaking out and trying to find the cure, how to go into permanent remission etc. You are probably in denial and want it all to go away. The bottom line is that it won't go away. If you are having problems coping please get yourself some therapy in order to learn how to cope and deal with your illness and your life. I am not trying to be hard core but one must make provisions in their life for the chronic disease and make the changes necessary, take the drugs that are needed to go on with life.
If you refuse to take medications because you want to control all the side effects you are doing yourself a disservice. I was scared to death about taking all those meds for my rare infection. I have learned from living with chronic disease that lying awake at night and thinking about all of it is a real downer. We human beings always tend to get melodramatic and always think of all the bad things that will happen and 90% of the time these bad thoughts don't come to be. Like Susan I am not trying to pass religion onto you but this is how I dealt with my 1 year of antibodics. The day I started the meds I stood at my kitchen table and told God that since I was not in control of this he would be the one who was in charge of my liver and I would not worry. That is how I dealt with it and it worked. I was nauseated and felt lousy the whole year but I lived through it with no abnormal liver tests.
Most of us that visit this site can tell when people are really having a hard time with adjusting to this disease. You are asking a lot of the right questions but your brain and emotions can't deal with all of the answers at this point. You need to concentrate on just the most important things. Make a list of what is bothering you and take it to your GP. Schedule for a longer than 10 minute visit because you need some answers. Find out what he can help you with and ask hiim who to see to help with the other issues. You can also do this when you see the Rheumatologist. If you are not pleased with the Rheumy find a new one but give him/her more than one chance. Sometimes on the first visit there are so many issues to talk about and you need to address the serious ones first such as eyes, ears, balance, fatigue, energy level, meds to help halt the autoimmune attack on your body. I see that you have vaginal dryness that is driving your crazy. Infections will usually result in some abnormal drainage. With sjogrens it is possible to have a low grade yeast problem much of the time. Buying the OTC vaginal creams can sometimes help save your sanity with the itching etc. The creams are the best as the moisturize. However, this is just a bandaide until you are seen and checked for other infection.
If you are lonesome and need to talk try to find an autoimmune support group in your area so that you can find others to talk with. If you are someone who goes to a church try to get involved enough to meet some women that can help you with finding good doctors etc. It is hard in this day and age to find support as everyone is so busy and we don't neighbor like we did years ago. I can guarantee you that if you take care of your depression/anxiety issues you will sleep better and worry less and that in itself will help you more than you can possibly realize. As far as your job, the best thing you can do is to talk with them and see if they have something that is not as hard on your eyes. You will have to be making some decisions and this can't be avoided. Thinking about making the decisions is always harder than after you have made them. You have to learn to live with your decisions and if things don't work out do something else. There is more than one way to skin a cat. Keep on keeping on! Irish ;D
I saw a neurologist for my nausea and was not able to help. Same with the ear doctors. I feel like my balance is not too bad. I had nausea just in the mornings for years myself. Now it is 24/7. That is why I thought it was the AIED. The chronic all the tiem nausea came on suddenly after the neck & back adjustment by the chiro 7 weeks ago. The dry eyes began in June. Can depression alone cause nausea & dizziness that is aggravated by head/neck/and epsecially eye movement? Reading what you wrote you had nausea with anti biotics but I dont take them or any meds. And when you had the nausea with movement (like mine) you described it sounded like it came and went? I dont read about people having it 24/7 on here so I do worry as I cannot function. Zofran did not work. I need to find where it comes from and what i can do so I am not handicapped over it as I am the only one to take care of myself.
Hi Vicki,
The others have posted some very good advice. I think that you should as Irish suggested make a appt with your dr and discuss all this with them, especially about what meds to take etc and the nausea issue, which i can see is bothering you.
I feel you are very anxious, which is understandable, considering you are young and are having alot of health issues, however I feel that speaking with a trained professional may help. They are trained to listen, offer advice, guidance and help you develop good coping strategies. The sooner you can start learning to cope with these chronic illnesses, the less stressed and anxious one will be. Believe me, noone is perfect, and we all have our own unique personalities, but you can let this disease define you and take over your life, most likely making you miserable, or you can learn to accept this new venture slowly, and make choices in your life.
There are so many people with chronic illness who somehow manage to work, or raise a family or become a valued member of the community.These people I continue to find inspiring, and good role models. However not all of us who may have complicated health issues are able to do this, and this doesnt mean they are any less valued. These are the peolple who usually make a difference elsewhere.
I became sick with several auto immune disease(sjs, Myasthenia Gravis,Raynauds,etc) in 2004,I was 25 at the time. Since this I have spent about 21 months all up in and out of hospital,and my lungs are very much affected as well as my mobility(currently wheelchair bound). It would have been very easy for me to give up at times, except I have always been stubborn. Many people believed my destiny was a nursing home at 26, but I decided to fight, and won that fight and live independantly at home by myself. I currently have recurrent chest infections every 3-4 weeks which knocks me around and usually I end up in hospital. However, now that I have more peace with my life direction, I like others ,take each day as it comes. When Im ok, I tutor a neighbour in language, I have become a advocate for a lady with downs syndrome, and I am hoping to try to commence study next year in the disability sector. On top of this I do physotherapy 3 times a week, and the usual dr appts, plus time with my friends.I was angry when I was diagnosed, which is a normal reaction, but to be honest I am now quite happy most days and my sense of humour has only increased llol.
Im not trying to make your situation seem any less real, but I want you to know, although it is a shock to find out that you have some health issues, how yuo decide to handle this and live your life to the best you can, will determine how well you can slowly adjust, perhaps accept, and your overall happiness in life.
Its not a easy ride, but as long as you adopt a good attitude, I think you can go far.
This is a very good board here, we have all had many hard difficult journeys, and its like one big family.
Come here any time, I hope I havnt been too hard, with the message Im trying to convey to you. I want you to know that I believe, if you seek guidance with a professional, you will find they are very good at helping you to cope. There is no shame in seeking their help.
Please let us know how you go
HUgs
sallijessi ;D
Irish gave some good things for you and everyone to think about. Also sallijessi is right that we all have been through so much of this. It all is a process it seems. Not just what we go through ,but the way we look at it. I think the way I looked at it was in some ways the hardest . Well let me say at least it took the longest for change. ::) At first I was overcome with fear of the unknown,and like you how I was going to live if I had to stop working. That will always be an issue for me,but I just cant afford emotionally to always be worrying about it. For one thing,it doesnt change anything. But, My prayers do. None of us here are trying to make all of this to seem unimportant. It is very important,and it's your life and our lives. It's what we all contend with everyday so it is a biggie. We just know the things we and you go through and we refuse to let it get the best of us or you . Welcome and join the fighters. lol....As long as you choose to you are part of our family. Take Care.
susanep :)
Just wanted to bump this one up,,This is a excellent thread. It has sure helped me today
God Bless You All