Suzypawz story.

[Suzypawz]

OK, sorry it's took till now to put a story up!

So here's a 'little' about me:

I've not had an easy life as I can always remember struggling with many things from an early age....which is probably why I'm the person I am today....a stubborn red headed female!!

( once a friend I'm always there for you if I'm an enemy you will know about it!!! ........don't have too many of them tho' & I can't say that word without it coming out wrong anyway!! ( emany.... enemy! ..... )

But anyway!........

I had back problems since the age of 12-13...told it was growing pains!! I find out what it is in the end...but not until I was late 30's!!!

Left home at 16, met hubby, we had 2 boys ...but then I lost my father in 1996, I had fell in a big hole with depression due to it plus we were all making plans with our wedding I wouldn't have my Dad there to give me away now & see my boys grow .......it took me a long while to get going after that, we continued & married in the June the next year. ( could that have been what started the auto immune disorder off maybe??! ) ....... my Dad passing not the wedding!!

I had a good immune system as a child untill after that, I never had anything: measles etc, then i had chicken-pox when my 2 boys had it, then I started having allergies, I also found that there was some fish i was also allergic to which I was ok with previously! and it nearly finished me off ! due to ignorance of 'a doc''!! I had also told the same 'doc'' around the same time that I knew that there was something wrong with me ...... but he told me it was modern living! & prescibed me anti-depressents! I told him I wasn't depressed! I just knew something was'nt right, I felt so tired all the while, aching & ill in general?

I then developed a migraine which lasted for 7 -9 days, I couldn't keep anything down, could'nt move, slurring, confused & then about 1 week after that I had to go one night to a&e as I had severe pains in my right arm and tingling, they said it was a trapped nerve, I said it was'nt as I had that 1 year previous and just knew it was'nt. The pain continued & got worse it also affected my legs, mainly the right one.

I changed my doctor as I had no faith with him in the end! the new doc' put me through some tests, at last! she was great, she found what it was.... Antiphospholipid syndrome!!

They think I may have had a small stroke too, they put me straight onto warfarin.

The 'specialist' there told me the rules of going on warfarin & APS, he also had said that my migraines would go....they never, they got worse!! also men didn't get it!!! & it wasn't hereditary!!

He told me....no alcohol! no fish oils, greens etc. i questioned this as surely you need these as you get older? (well ok not the alcohol!) so I went for a second oppinion from a dietician at the hospital, he said there was a new report out and you could all mentioned but in moderation! he also stated that the 'specialist' hadn't checked out these new reports! well when he found out i went for a second oppinion he refused to see me again and now I have to travel to see another specialist in another hospital!

The hospital I was sent to the neoroligist kept asking me to take anti depressant tablets to help me with coping with the pain ,APS etc!!....I felt I was doing quite well & didn't need them! I stated I was just fed up with not being listened to!.............so I wasn't allowed to go there either !!!!

I was always told you were allowed to have a 2nd oppinion & refuse tablets?....but obviously not or at a cost!! I now have to travel to London....which hopefully I'm going to benifit from that anyway.

In 2008 after a few years of putting up with a lot of stomach pains and off food and being sick, they x-rayed, they found a stone, so they removed my gall blader.

I am still now off my food on & off and i'll binge-eat too when i feel like eating!

The bottom of my spine is wearing away quicker than it's supposed to...degenerative disc disorder they say plus arthritus will be in my future.

The pains i get in my right side feel like i'm being hit with a sledge hammer, I get soooo tired, coldness down 1 side, right leg gives way, right hand is weak & I drop things, get numbness in my face & feel like an ice cube has been dropped into head!I get very confused easily, feel drunk? all this is worse if my inr is below 2.8. does any of this seem familiar to you?

when I had to give my job up it got me down, but I knew it was for the best, I'm 'unreliable!' & in the end you have to think of no.1 & yours.

I now do more art and do photography, also being admins on Hughes sites, area leader for Staffordshire / Derbyshire, raise awareness everywhere I can of Hughes, at gigs I leave leaflets & cards! also docs surgerys', hos', community centres etc, also run my own pet shelter which I love doing, it includes: ducks, ferrets, rabits, guinea-pigs, rats, degus & any other small animal that needs help.

I have been to college doing level 2 & 3 in photography over the last 3 years & achieved a diploma! which was a great achievment to me with the 'brain fog' we get !!

I also do photography for hubby's bands & other local bands which I really enjoy. I love the atmosphere of gigs & music has always been a big part in my life ( mainly rock & the heavier the better! )

Me & a friend are starting a tattoo / photography & art studio's hopefully in 2013 so that is what I am working & practicing towards

I always remember there is always someone else out there a lot worse off than you and we should always appreciate the things we can still do and make the most of life. I get really fed up just like the next person especially when it gets so painful I don't want to move, or eat, but i want to enjoy life and Hughes is not going to stop me!!

Well there you go!!!

[jessielou]

Hi suzi

glad you posted your story, you a tough lady with a soft centre, glad to have a friend like you.

See you Saturday hon

take care gentle hugs love sheena xxxxx

[Suzypawz in reply to jessielou]

I'm a bon bon!!

Hugs to you hun, see you Saturday its going to be a busy 2 days....but looking forward to them, yes....I'll be careful too xx

[Lesley_D]

Thanks for sharing Suzi, we do have to be strong be well,

Warm smiles to you

Lesley

[Suzypawz in reply to Lesley_D]

Yes we are a strong bunch!! x

[daisyd]

Nice to know you, love your pictures

Good luck

Karen xx

[MaryF Administrator]

An inspirational posting, good on you, and the best of luck and warm wishes for everything you do! MF x

[Suzypawz]

Thank you ladies it's lovely getting to know you all too, we are one big family Keep smiling xx

[pumpkincake]

Your positive attitude is awesome Suzy!! Keep up the smiles and ALWAYs push through. It is awesome that you can do photography and work on your art. You seem REALLY busy with it all...good for you. You definitely have a wonderful heart...that shows. AND you take care of animals= awesome!

Take care Suzy...and Rock on girl!!!

[GinaD]

Thanks for the story Suzy. I too have some nerve entrapment(?) thingee going on but mine is the left sciatic nerve so my pains run down the outside of my left leg -- as well as my lower back/pelvic area. Fun times. I'm off to see my alternative med doc this morning for a check-in. 5 will get you 10 that he is going to recommend an anti-depressant? Any takers? Anyone? . . . No? Oh well. Tough crowd.

So, are those cursed antiphospholipid antibodies going after nerve ganglia/junctions at the spine? Is that possible? Or do I really have an autoimmune paranoia?

Gina

[traceylou]

Cannot believe it, everything you said is remarkably like me!!!! Thank god, even down to the doctors not wanting to know, I cannot do anything I am hit by this so severely. Could I ask you do you have anything else i.e. do you have primary or secondary APS, I have been told I have secondary with Sneddons syndrome which is a rare form-only 4 in every million!!!! causing multiple small strokes, have you suffered any? I shall definitely be writing my story soon and would love to share more thoughts with you as I feel that you are a breath of fresh air for mexxx. Look forward to talking to you soon Traceylou xxxx

[jean48]

Gosh I can relate to you. I colored my hair red to match my personality, So great you take care of animals. I love my pets. I too don't eat until I'm starving. I'm never hungry and it keeps my wait in check. I have two boys also. I had unknown APS while I was pregnant and delived a 1 lb 5 ounce baby. He surrived and has mild disabilities. My second son we adopted from Korea. I too am not working per say but am taking care of my mum who has Alzheimers. My dad is not doing too well either. So glad you went back to school for photography. Even though we are tired we still can be great!

[Suzypawz]

I'm so happy to know all you lovely people

You are all your own inspiration......

No I have just APS....at mo' still being tested for other stuff!

Yes I love my pets that are under my care....even the duck called Howard ! who chases me off & attacks me frequently!!! ( he had been attacked by a dog when a fence panel came out last year & his personality changed )

Any of you are more than welcome to contact me any time....just pm me & I'll get back to you with no. & we can have a good old chin wag!!

Yes...I'll keep on rockin'!! .... think less of the head bangnig at mo' tho' !! xx

[BJF325 in reply to Suzypawz]

So nice that you have shared your story. It is always an inspiration to here others storys. May God Bless!

[SueLovett]

Thanks Sue,

You know I care x to you and all my animal friends xx

[Suzypawz]

Thank you its nice to chat to others that understand you.

Hugs to you all being sent xx

[GinaD]

Follow up on my doc appointment I referred to above:

Someone should have taken my bet. He did NOT recommend a pain killer or antidepressant, and he was positive about my theory that a higher INR might address the hip pain.

Maybe I have become paranoid. (Is that treatable with antidepressants?)

[Suzypawz in reply to GinaD]

I hope you got some answers you needed to then ? I'm fed up with bein offered anti depresants for everything & then tryig to blame it all on your past life ect ect!!!

I hope the highe inr helps for you, maybe plaquinil could help? have you tried that? Sue x

[WayneL]

Hi, Gina

From what I've read on the matter regarding the nerves,'i'm guessing that the Myelin sheath that protects the nerve centre is being eroded by the Antiphospholipid antibodies, thus generating the associated pain.

Think of it as a bit like a power supply cord being stripped of of it's protection and the bare wires being allowed to touch.

The message gets scrambled and the nerve no longer does what the brain tells it to do, so in its confusion it sends an alert message (pain) back to the brain.

Only my thoughts here, so please feel free to correct me if I'm mistaken.

Thanks

Wayne L

[GinaD in reply to WayneL]

Wayne, that sounds so reasonable! I just posted a follow up to my saga on the Friday the 13th thread. But yeah, your theory certainly makes sense!

[jetjetjet]

n hay suzy , i was just looking at your pics together ?? what a similarity, my goosh isnt that a lucky rodent ????????????. and such a cute face on you both ????? where do you find these pics !!!!!!!!!!!!!!!!!! . just thought i would drop you a note ------------------------ me ---uncle benny

[Suzypawz in reply to jetjetjet]

I find the pics off the internet! I think some you can find are sooo cute or funny then sometimes they are my pets playing for the camera!