Looking for support from fellow caregivers

[Rosey UK]

Hi AF

You made me laugh to day, I know what you mean in the kitchen, and thank goodness you can still control things. my Joe's a bull in  a china shop too.

I wish you well.

 I can't think properly now it's 8pm now and when i'm tired i can't remember what I want to write. So just ignore me and.

Thankyou

Rosemary XXX

[Eva Holloway]

mj47,

I found out that I had Sjorgrens and the dentist told me that also causes a lot of problem with teeth since you don't produce a lot of saliva. I also have problems with my teeth. Hopefully your husband had it fixed and he is feeling better.

Talking about caregiver: my husband is very supportive and I have two very close friends that always help and support me. I made my husband read a lot of the info about my health issues, he also read the The Road Back book. A girlfriend went with me to chemo all the time plus to the doctors office and heard what the rheumy had to say to me and what I had to take to get well. She is more furious about the rheumy than me because she could see what the medication did to me.

I have been on antibiotics for two years now and on LDN for four months and doing a lot better. So be patient and even when days look not so bright there is a rainbow on the end of this process for you and your husband.

Now I have to say my husband cooks breakfast every morning and I enjoy that very much because when I get up in the morning I am still stiff and have a hard time moving. I am willing to cook dinner and do lunch, but breakfast I am so glad he does it. He heps with various things around the house and now that he lost his job he actually helps a little more. So I can say is is a big help. His mom made sure all her children could cook at an early age, I have thanked her for that.

Eva:D

 

Eva Holloway

[Rosey UK]

Lizz

Thankyou for your prayer, I really appreciate that.

The plaquinil may take a while to work but they have stopped my fevers already. I am very  hopeful.

Thankyou for your kindness

Godbless

Rosemary

[Maz]

[user=115]Rosey UK[/user] wrote:

The plaquinil may take a while to work but they have stopped my fevers already. I am very  hopeful.

Rosemary, that's terrific news! A great step forward to start the new year!!! You are such a trooper, I know you're going to make it!

Peace, Maz

[Davit]

One Catholic to another.

God never gives any one more pain than they can handle. We just don't know sometimes how much pain we can handle. I have asked why He wont just let me go, I've been good. The answer is rather simple. I may not have much of a body left but I do have a mind and I do have compassion. He still has a use for me. I can still be of some use even if it is only as an example of what not to do. I can hobble into the hospital to visit on my bad leg and the old folk light up. Here is some one to talk to who is younger than them and suffering too. And I always shrug off the pain so we can talk about them. If any of you think what you are going through is tough just remember that there are some doing it by their selves. Some because like you their friends and family have deserted. Some just because they have out lived their friends and family. If you dig down deep you will find the strength you need. Their is no greater love than to love another. And never forget that it is hard for some people to accept help especially if they have been the strong one.

Go in peace.
Davit.

[Davit]

Some how this ended up not where I wanted it.

[Roz]

Davit,

I am soo glad these lines find you in better spirits. 😉 Compassion it's just a great quality.

I went from having a very successful business, to given no hope at all by mainstream Docs. Like you, I started late with the infection connection related to R/A.

My husband tried to hang but it just wasn't in him and I forgave him. He would get soo mad he thru my medical charts in the Docs office.

I am doing so much better than I ever thought I would. I hope and pray the same for you. I just can't put the mighty one in a box!

Roz

 

 

[user=1539]Davit[/user] wrote:

One Catholic to another.

God never gives any one more pain than they can handle. We just don't know sometimes how much pain we can handle. I have asked why He wont just let me go, I've been good. The answer is rather simple. I may not have much of a body left but I do have a mind and I do have compassion. He still has a use for me. I can still be of some use even if it is only as an example of what not to do. I can hobble into the hospital to visit on my bad leg and the old folk light up. Here is some one to talk to who is younger than them and suffering too. And I always shrug off the pain so we can talk about them. If any of you think what you are going through is tough just remember that there are some doing it by their selves. Some because like you their friends and family have deserted. Some just because they have out lived their friends and family. If you dig down deep you will find the strength you need. Their is no greater love than to love another. And never forget that it is hard for some people to accept help especially if they have been the strong one.

Go in peace.
Davit.

[Rosey UK]

Davit

Sorry but it's not God that makes you ill. He only wants you well.

We should'nt be feeling like a victim. we need to look at how we perceive our selves with the disease and maybe we are alll tangled up in recentment, feel let down or in permanent grief like.

I'm reading a book and it askes to think about the time the doctors told you what disease you have and how he told you.

This made me realise that I had been very traumatised a few times by these docs and i've been carrying it round and that's why I feel heavy inside. I'm working on this with Joe (hubby) right now,

hope this helps

Rosemary

[Rosey UK]

[user=27]Maz[/user] wrote:

[user=115]Rosey UK[/user] wrote:

The plaquinil may take a while to work but they have stopped my fevers already. I am very  hopeful.

Rosemary, that's terrific news! A great step forward to start the new year!!! You are such a trooper, I know you're going to make it!

Peace, Maz

Thanks Maz.

love Rosemary xx

[Davit]

Rosey

Not good to take every thing I say too serious only the important stuff.

Not even God will hire you till you prove you can do the job. I don't mind being tested.

You don't have to look too close to tell the sheep that aren't his. But it's a big flock and sometimes they are hard to find. We are here for but a short time, make it worthwhile.

Peace, sorry if I'm giving people the wrong impression.

Davit.

[Maz]

[user=115]Rosey UK[/user] wrote:

I'm reading a book and it askes to think about the time the doctors told you what disease you have and how he told you.

This made me realise that I had been very traumatised a few times by these docs and i've been carrying it round and that's why I feel heavy inside.

 

Rosemary, this is such an important topic and thanks for bringing it up. It took me back to when I got my diagnosis. :crying:

Long and short of it was that I waited weeks for some labs to come back and finally called my GP. After scrambling to find my folder, I was told over the phone by a bored-sounding receptionist that my “RF” was elevated and that the doc said I needed to see a rheumatologist. I asked what “RF” meant and she told me, matter of factly, that this marker means you have rheumatoid arthritis. I nearly fainted…I was speechless…not only at the lack of compassion, but that my doc felt it was okay for a receptionist to pass on a message that I had RA, which I knew enough to know was a chronic, degenerative “autoimmune” illness.

Probably the best thing to come out of this “medical pronouncement” was that I got angry enough that it started me on a search for alternatives. So, all in all, I am no longer angry about how I was told so carelessly I had RA (which incidentally was quite wrong as RF and anti-CCP can be elevated in Lyme, too), but actually grateful for this physician's insensitivity, because it spurred me on to search for a way to get well again.

Getting to this “mental space” of acceptance was by no means an overnight thing for me…I ddn't see it for a long time and the anger continued to bubble away under the surface for the first year or so. I was grieving the loss of my mother, too, so the double trauma was a lot to come to terms with. I sometimes get asked how I know so much about all this stuff and that I must have a science background.

I have to laugh now, because I came into this kicking and screaming (quietly to myself) and never thought I'd be having to research my own disease to quite such an extent. I guess the anger stage of grieving I went through had a greater purpose as it enabled me to channel it into being my own health advocate. I was brought up to trust and respect medical authority – my Dad is a veterinary surgeon – and in one fell swoop that trust and respect went right out the window….but, in many ways, this paradigm shift in my thinking was probably a fantastic gift!

Rosemary, I hope you can find healing for the trauma you've experienced, too. It's certainly a process and will be different for everyone…as I look back, the best first step for me was actually seeing just how traumatized I felt. Joe is such a dear man…you've got such a great guy there!

Peace, Maz

[Rosey UK]

You know Maz it's discusting ans so insensitive. It's about time they were trained in how to talk with their patients for serious illnesses.

When I finallyn saw a  first line rheumatologist afteer waiting 18months. I walked in his room, he glanced over at me and said “Rheumatoid arthritis” as though he was saying my name. I was instantly shocked and started to cry, and that is something I don't easily,  I would normally hold back and cry later, but I couldn't help it. I said “no I don't have that, my Mother had that and I don't” he said my Dad had it too and I didn't realise it for a long time. As though he'd got expert at it now. He told me to go home and grieve.

Then about 3 years later under my 2 regular rheumatologist, the male rheumatologist, wanted me to know about lupus and because I didn't take much notice, every appointment just kept on at me as though to frighten me, wouldn't let me speak about the abx wouldn't hear of it, just talked as though if I didn't do what he said I was in great danger. I  Would hold back the tears and I ached inside, I felt so intimidated and threatened. Then he dropped the bomshell, he told me to go home and look up scleraderma. We did  and we cryed with the prognosis. I was going on a cruise a week later. I thought I was going away to prepare myself for the end of my life.

I met others on that cruise with alsorts of conditions including a lady who had MS, she had 2 teenage children her husband divorsed her when she got ill. She met someone else on a course and they stayed together. She inspired me and changed my perspective on things. I came home more positive.

If we didn't have the abx we would be in trouble. But I didn't realise I was still carrying around the shock and trauma.

It's good that you looked at the positive from it all and saught alternatives. Inspite of all that. I think because I was looking for herbs and other alternatives, I missed Dr Browns protocol at first. The good thing is we did find it. It seems to me that newcomers find it much quicker now?

Thanks Maz for sharing your story.

love

Rosemary

 

 

 

[Davit]

Has any one met a conventional Rheumatoligist who takes his own medicine. I haven't even met one who has any form of Arthritis. The only one I ever saw was just as callous. I went to him with a thumb that didn't work. I drove 130 miles to see him and all he said was. “you blew a tendon”. I said what do you do about it. He never even looked up from the paper he was writing on and said “you'll have to get it fixed” and dismissed me. His receptionist talked a surgeon into seeing me on his lunch hour and two days later I had it fixed.

Just recently I had a Rheumatoligist come into my room in the Hospital where I was slowly dying from staph with a big needle and was going to give me 20 mg of MTX. (I kicked him out and got in trouble) They can be so cold.

I am sure every one has horror stories like this.

My MD was the one that told me you can have RF and not have RA, and vice versa.

I too have done my own research which is why I can still walk.

Davit.

[Eva Holloway]

Davit,

this is why we are our own doctors because we read up on our conditions and then aske questions, even if we get put down, sometimes you still will find a regular doctor that is willing to listen to what is asked. My pulmonary was like this but since my results from my lung has so much improved without the meds from the rheumatologist he has changed his mind. He actually listens now and even ask what I am taking. He had started me on the Biaxin when I had the bad sinus infection and my rheumy wouldn't give me antibiotics, but he is not the one that will loose his certification for presribing antibiotics since he takes care of patients with lung and allergy problems.

Eva:D

Eva Holloway

[Davit]

Eva

I quit going to rheumi's 10 years ago. I should have made it 20. My MD writes the prescription. And why not, he can cover his butt by saying it is for Pimples or Pneumonia. The only problem is he is paid salary instead of commission so there is nothing in it for him to study up on AP. There are no Rheumi's in northern B.C. only doctors of internal medicine with an interest in rheumatology. More like walletology. Even the microbiologist here is just going by the book. Even if I didn't want to, I still would have to do my own research. I guess I should admit here that I have only had time for a computer in the last 8 month. Before that my sister in law did my research and arranged the meeting with ABIRD. (anti biotics in rheumatoid diseases.) I have made up for lost time. I use my full 3 Gig allotment every month. ( high speed air card, no cable out here.) I like the air card cause I can sit under my fruit trees and use the lap top. This is still the best place for answers. No lying salesmen. The internet just gives me ideas to look into. I certainly don't take every thing there as the truth. Like the autoimmune thing. It's not wrong just mistaken. I like the fact that other people are doing some of my research for me. And I want to know about every thing even though all I have is RA. and a bit of OA.

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