I was diagnosed in 2008 about a year after being diagnosed with a heart problem similar to Tachycardia which if you don't know is a fast, irregular heartrate. My problem is that ever since my 2nd daughter was born in 2005 I have become increasingly allergic or sensitive to many drugs of all sorts. This makes dealing with my ever increasing health problems extremely difficult! Right now I am on Rheumatologist number 4, and after my first visit there in November he at least is willing to try to help me when my last doctor gave up on me. My disease has been progressing very quickly and every time I go to a doctor all I hear is doom and gloom in what they tell me. I just turned 32 a couple days ago and basically it sounds like unless things dramatically change(as in I suddenly am not allergic to a drug and it actually works well), then soon the disease will not only be freezing all my joints but moving on to affecting my organs, which totally freaks me out. They basically say I will be lucky to live to 35, 40 at most and I want to live my life and see my girls grow up. I feel totally overwhelmed and depressed by what doctors say and I don't know what to do.
I feel for your disease and burden. It must hurt your heart so much to have 2 beautiful children and fear not seeing them grow. I can't believe how evil this disease is. I haven't heard of it being this devastating until now. Hugs from North Idaho to you. Stay here and reach out, as this helps me.
Thank you Michelle :)
michelle said:
I feel for your disease and burden. It must hurt your heart so much to have 2 beautiful children and fear not seeing them grow. I can't believe how evil this disease is. I haven't heard of it being this devastating until now. Hugs from North Idaho to you. Stay here and reach out, as this helps me.
I'm so sorry to hear this. I can't even imagine being in this position.
Keep searching for a doctor that can treat you. You may want to try a research based one, who might be more open to trying out different things.
Hi! Did you develop the allergy problem after being on PsA drugs? I have had an extreme sensitivity problem start since my rheumy up'd my enbrel to twice a week. Foods and meds that I have used my entire life are now life threatening for me. I have actually had to start carrying an epi pen around.
Im sorry to hear the "doom and gloom" that you have been hearing. Hopefully you will find something soon to help you out. As a mother, I understand your need to get things right. Best to you and your family.
Hugs!!! Have your doctors investigated at all what might be the root of your reactions to medications?
What a scary place to be in. At the moment I'm luckily doing better on treatment with Remicade, but have liver damage that's source is still undiagnosed and will be seeing a hepatologist in a few months to hopefully get to the bottom of it. My kidneys aren't functioning normally either. Odds are it's my overly aggressive PsA. That I could go into liver failure within a year or two scares the crap out of me. I have five kids, ages 14, 12, 10, 7 and 4, and really want to see them all journey into adulthood.
I hope you get more answers and successful treatment soon!!!!
I am with everyone here. Find one someone who thinks outside the box. Keep searching!
Thank you Stoney. I just started at a Rheumatologist at a University Hospital. He is the head of his department and teaches 4 days a week. He is supposed to be a big research guy, I am hoping he figures it out. I started seeing a Cardiologist last year at the same hospital and he has done tons of research to help me so I am hoping the same holds true for the Rheumatologist.
Stoney said:
I'm so sorry to hear this. I can't even imagine being in this position.
Keep searching for a doctor that can treat you. You may want to try a research based one, who might be more open to trying out different things.
Thank you Mltoups. I am so sorry to hear about what you are going through! That sounds super scary! I developed my allergies after the birth of my 2nd child. That is also the same time I started having a bunch more medical problems.
mltoups said:
Hi! Did you develop the allergy problem after being on PsA drugs? I have had an extreme sensitivity problem start since my rheumy up'd my enbrel to twice a week. Foods and meds that I have used my entire life are now life threatening for me. I have actually had to start carrying an epi pen around.
Im sorry to hear the "doom and gloom" that you have been hearing. Hopefully you will find something soon to help you out. As a mother, I understand your need to get things right. Best to you and your family.
Thank you Nym. Sorry to hear about what you are going through! I only recently found out you could even get organ damage from this disease. I hope they are able to help you and that you can get some answers. How are your children handling your disease? My 11 year old used to get panic attacks at night because of her fears of me dying. But we got her into dance and the outlet seems to have really helped her. Glad the Remicade is helping you, I loved it the year I was on it until my body built up antibodies to it and I had a severe allergic reaction one time when I went in for an infusion. So far the new Rheumatologist has decided to try a drug that has no latex in it because of my latex allergies. Hoping that makes a difference. I don't know why all the immune suppressant shots have latex for a preservative when so many people are allergic to it. Also he want to me see an Allergist to do some sort of testing to find out what actual ingredients of meds I am allergic to.
nym said:
Hugs!!! Have your doctors investigated at all what might be the root of your reactions to medications?
What a scary place to be in. At the moment I'm luckily doing better on treatment with Remicade, but have liver damage that's source is still undiagnosed and will be seeing a hepatologist in a few months to hopefully get to the bottom of it. My kidneys aren't functioning normally either. Odds are it's my overly aggressive PsA. That I could go into liver failure within a year or two scares the crap out of me. I have five kids, ages 14, 12, 10, 7 and 4, and really want to see them all journey into adulthood.
I hope you get more answers and successful treatment soon!!!!
Thank you Rebel mom. I am hoping the new Rheumatolgist fits that bill. From what I have heard he is a big research guy.
Rebel mom said:
I am with everyone here. Find one someone who thinks outside the box. Keep searching!
Love and light to you - my heart and thoughts are with you. Just a thought... Have you heard of EFT (Emotional Freedom Technique) - it may help deal with the 'fear' side of things. The more we worry/fear about 'what if'; 'if only'; 'why?'; the more we feed it. The more we feed our mental state (empowering or disempowering) the more our bodies will respond accordingly. I know personally when I allow fear to take over, not only is the pain worse, the fatigue becomes acute, the head gets fuzzy and I can get completely consumed - feeling overwhelmed I then have to battle anxiety and depression which contributes to more inflammation and acidity in the body. Stress (among other things) is an acidifier - with disease in particular, we need to maintain high alkalinity - laughter is alkalising - a good comedy can sometimes work magic :)... From my understanding - people who survived life-taking illnesses understand deeply and have worked closely with the mind/body connection. For me personally I know it helps (doctors have been surprised that I'm not in a wheelchair) in fact, no outward signs - which can of course bring challenges all on its own :)... Sorry back to EFT - it may help you clear any distortions that can build up in the mind over time when fear rules... And thought is an energy, which given enough attention, must manifest in a physical form (in this case, through our body). Hope this gives you something to try xxx
Thank you Annemarie, and thanks for the link. I will have check it out. I know that stress and axiety/fear play a huge role in making auto-immune diseases worse. I have always been a very worrisome, anxious person, even as a young child. I am trying to use my faith to give God my worries and know that He loves me and will take care of me. It is just hard to let go but I am working on it.
Annemarie said:
Love and light to you - my heart and thoughts are with you. Just a thought... Have you heard of EFT (Emotional Freedom Technique) - it may help deal with the 'fear' side of things. The more we worry/fear about 'what if'; 'if only'; 'why?'; the more we feed it. The more we feed our mental state (empowering or disempowering) the more our bodies will respond accordingly. I know personally when I allow fear to take over, not only is the pain worse, the fatigue becomes acute, the head gets fuzzy and I can get completely consumed - feeling overwhelmed I then have to battle anxiety and depression which contributes to more inflammation and acidity in the body. Stress (among other things) is an acidifier - with disease in particular, we need to maintain high alkalinity - laughter is alkalising - a good comedy can sometimes work magic :)... From my understanding - people who survived life-taking illnesses understand deeply and have worked closely with the mind/body connection. For me personally I know it helps (doctors have been surprised that I'm not in a wheelchair) in fact, no outward signs - which can of course bring challenges all on its own :)... Sorry back to EFT - it may help you clear any distortions that can build up in the mind over time when fear rules... And thought is an energy, which given enough attention, must manifest in a physical form (in this case, through our body). Hope this gives you something to try xxx
Faith gives me determination and courage - so may you never let go of HIS hand :)
That is great Annemarie :)
Annemarie said:
Faith gives me determination and courage - so may you never let go of HIS hand :)