Still feeling angry!

[Grammie]

Good morning everyone. I pray that you all are having a somewhat painfree day. I need to vent just a tiny bit please. As most of you know I suffered from a stroke in Feb. In Sept of 2010. I suffered a heart attack, the Dr told my family that I beat the widow maker. Well at both attacks, my family believes that it was all caused from my pain medications, that I was taking too much or that maybe I forgot that I took one and took another. (my parents and one sister). Why do they believe this? Both times I could have died and they simply just thought I was oding! My Drs have told them this was not the case. That the RA has weakened the heart causing the heart attack and the stroke. That is was not due to pain medication. For some reason they refuse to believe this. I take one - two pills a day. I do have severe RA. I am in constant pain. I usually fight right thru it. I am trying to forget this, but it really is hard. Just when I thought I was getting over it, the stroke happened and they really thought I had taken too much. They kept saying "you have got to get off your medication". My sister even told me on the way to the Dr that I was high as a kite. Of course this caused me to become even more upset, which made my blood pressure sky rocket making the stroke even worse. Please give me your opinion as how I might overcome this! I simply try not to discuss any of my health issues with my family. They just seem to want to believe the worse of me regarding my medications. My sister is even convinced that the cortisone injections my Rheumy gives me is detroying my body. This is pushing me further away from them. I dont want to feel this way about my parents, they need me and I need them. Thankfully I have a wonderful husband. When I was in the hospital and rehab, he would not let my sister even come to visit. He said that he has had enough of her. He is not to fond of my parents for feeling the way they do, he does say that he believes it is all due to what my sister is saying. Sorry this vent is so long. I just would like to hear what you guys have to say on this. I am so tired of having to defend myself. Thanks, Linda

[Hidden]

It seems some of your family are very unsympathetic and medically ignorant, the Dr is your expert. perhaps if you contacted NRAS and got some leaflets on your condition and on the medication used to treat your condition and showed these to them it mat help?

Beat wishes

Alison x

[sylvi]

Linda, you poor woman, its bad enough that you are so ill without the family upsetting you when you need them most. Your husband is sadly correct when he kept your sister away from you when you were in hospital.

I hope that you recover from all this distress from your family and your illness too. We are all praying for you on here. You can vent all you like we all know how you feel.

Take care. Sylvi.xx

[Hidden]

Poor you Linda. I think we all have had a taste of well meaning people getting concerned about us and getting a bee in their bonnets about an amazing cure or a wonder drug or a complete rejection of our horrible drugs and that sort of thing. I hate it now when anyone says "have you tried this?" or emails me some horror story about our medications.

If they won't listen to your doctor then they are hardly going to read NRAS publications I suppose? - and all they have to do is google RA and learn for themselves that it's a serious disease that forces us to take all this medication or we will get much, much sicker. I think perhaps you should write them all a very calm letter explaining RA and how you have a very aggressive RA that has caused heart problems and led to strokes and that you are finding their attitude is making you more stressed which is very bad for your condition.

If it's all down in writing and you could perhaps get your doctor to give you some paper work that explains about heart problems and RA then they really would find it hard to keep going with all their denial and blaming the drugs. Hope this helps. Tilda xx

[Hidden in reply to Hidden]

Tilda, that is a great idea! Also, maybe the doctor could also undersign it, to show his support.

[Hidden]

OH Linda your post is really sad. You have went through so much of late, thank goodness you have a loving and sensible husband. It must be very difficult to put up with such accusations when you are suffering terribly.

Sometimes my family can be a little overbearing, (though i do not want to make comparisons with your awful situation) - and they used to constantly analyse the reasons why i have ra, if it is ra, could it be my lifestyle etc etc. They nearly drove me to doubt everything and what i was actually suffering. I wanted their support and i really like their company so i just keep correcting any stupid things they say - they will get the picture eventually. And ofcourse i come on here and rant about it continuously.

Its hard to know how to get them to see sense particuarly when the doctor didn't have much luck. Please keep blogging so you at least can get it out of your system. Could your husband have a calm word with your parents although i can totally understand his annoyance.

[helixhelix]

What a shame to have such unsympathetic family members. Only you can decide what might get through to them, although I also think writing a letter could help. If not, is there a local RA association or patient support organisation with someone who knows about RA and could talk to them on your behalf and explain? You shouldn't have to do this yourself as I can appreciate it just makes you even angrier.

And good on your husband for not letting your sister near you in hospital!

Stay calm, Pollyx

[tiger]

I obviously don't know your family but I think that Polly is right, if someone impartial outside the family (like someone from the local RA assocation) was to speak to them it might portray their interpretation of RA and hopefully get through to your family. Someone needs to do this asap because it is giving you added stress which doesn't help you from a RA or heart/stroke point of view.

You mentioned that when you were having your stroke your sister said that you were as 'high as a kite'. This could have been because your brain wasn't receiving adequate blood supply in all areas which would result in you not being as coherent as normal! Take care.

Wendy xx

[sears]

Hi, the sun is shining here in Northern Ireland but I am not having a pain free day, my hands are sore but seeing the rhum nurse next week to get these wonderful injections hope they work.

Ruth xx

[LavendarLady]

Linda, I feel so sorry for you. What an unsympathetic family you have. I bet if they suffered the pain you did, they would be yelling for medication.

Summer suggested contacting the NRAS and getting some of their leaflets. That is a very good idea and they are so useful at letting people know what RA is, what its effects are and what medication is used.

I see your doctors have spoken to your family and tried to tell them it is the RA which is causing the problems not the medication. If they are not prepared to listen to a specialist, there is little you can do. Your hubby sounds great - he is clearly very supportive and not prepared to allow your family to upset you.

Do you have a local RA association where you are? They would be able to help if you contact them for advice. Do you have a good friend you can confide in other than your family? It seems to me you need someone who can be sympathetic and helpful when you feel really ill.

I do hope you are over the stroke and heart attack and getting better now.

The Stroke Association here in UK do have a website - there is probably something similar in the States for extra assistance.

Speak to your doctor about pain management as well. Steroid injections can cause problems with bones. Might be a good idea to have a bone scan done. Again speak to your doctor about that. I have had two bone scans so far, the second one even showing an improvement in bone density! If the scan shows no problems, at least you can tell your sister the steroids are not harming you.

Don't forget we are all here for you - so feel free to let off steam whenever you want to. Love LavendarLady x

[Grammie]

Thanks Every One, I have gotten booklets for the RA association here and from my Dr. I have printed out material, to no avail. There really is nothing else I can do. What bothers me is that I keep telling them I am not a druggie along with all of my Drs (3) and they prefer to not beleive. I think they are in denial. But, I do not share anything with them any more. If they ask how I feel I answer with fine or that I am doing better. I just pray that I can get rid of the anger regarding this. My husband is wonderful. He really takes good care of me. I love him so! I might not like him all the time, but I do love him. All good things work together for the good! I believe this. I really appreciate all of you. The support here is so comforting. At least when Phillip is at work I can come here and find what I need. Today WILL be a better day. I am going to lunch with some friends, I have been released to drive after a couple of months so I finally feel free. I might just walk around town and visit a few shops while I am out. I pray all have a pain free day as much as possible. Take care. God Bless you all. Great Big Gentle Hugs to all. Linda

[LavendarLady in reply to Grammie]

Hope you have a really good lunch and enjoy yourself. A bit of retail therapy does wonders as well. Big hug. LavendarLady x

[Hidden]

Going to lunch with friends is some of the best therapy! Once a week would be delightful, even if not with the same friends. Alternate friends and you could have a heck of a social life!!

Being released to drive is like getting let out of prison! I have not been able to drive for 8 years! but I have many wonderful friends who rescue me often, plus a lovely neighbor lady who calls me frequently to ask if I need anything, or would I like to go with her. Then, of course, my family is near, they do understand my situation. I'd say, concentrate on your friends, maybe someday soon your family will come around and understand. That is a shame, you need them and yes, they do need you also. Hope and pray for better days. Love, Loretxxx