giving up my VP volunteer job
I turn 50 soon and told my VP job I am taking the day off all day on my B day. Boy what a scramble. I didn't say why just said I was unavailable. It's been brewing a long time and it's my health and sanity or the non profit.
I was diagnosed with Hashimotos 5 years ago knowing there was an underlying autoimmune disease brewing. Recently the RA titre was too low to be RA but the inflamation level of my muscles and blood vessels was very high. In my 30's I did have CFIDS but got it to go in remission. Boy low thyroid sure feels different and this new flare feels even more horrible, The joints are mildly swollen, been worse before, muscles are real achey. I was diagnosed FM in 97 after 3rd back surgery( doing pretty good for glued and screwed off my rocker) and this new stuff is way worse.
I was seeing a DO who dealt with chronically tired women and edocrine thing were a specialty. He was good but horrible for perimenopause. Insurance changed so I moved on to a naturopath female. She has worked wonders for my perimenopause and upped the aromur thyroid. Good blood work but she is the one who detected the inflammed muscle and blood vessel. She also said an autoimmune disease if work it way to the surface but in her realm the treatment is the same. I follow a Gluten free diet as I believe I have celiac but test negative( test done with me gluten free, duh) Lately I was cheating with Valentines cupcakes and notice biy muscle joint pain. I shouldn't have dairy either. Naturopath( NP) said my body will crash big time if I don't control the things I can, like food. She has me on vit D as it's stupidly low, Calcium as I did fracture my spine fusion last year doing my VP non profit job, heavy lifting, hernated 2 discs also. NP said I might get chest pain or asked if I had it. I told her Ive had it since 88 feels like pericarditis. Now it's bad when I'm in a flare, like now. Lymph nodes all swollen. I hade neck lymph nodes swell for years sore throat for years during active CFS. That went away with GF diet as well as abdominal pain.
With perimenopause hormone swings( I know why 50 y.o drop out of site, disown there kids) oh life is a mess. DH is back in school unemployed, I haven't worked since 97, adopted a son now 13 and in puberty. No one is happy mom refuses to cook or clean. 30 y.o. daughter was in car accident with car insuranc enightmare, she's brain injured and crazy. Last flare occured with me taking her to ER for Valium as she's not supposed to be with out yadd yadda yadda. 2 weeks ago her friend who was driving her when a car hit them overdosed., same ole same ole
I have a rheumatologist who is a dear and willing to run test but seems wise and looks at me like he knows what is coming. He indulges me with my script for 2 ultram a day knows I am horrible from December to May. I will ask to see him monday during this flare and maybe do more tests for lupus. Sometimes I am fine not having a firm diagnosis and some times my family thinks I'm nuts and I want to say "look you idiots, I can out clean out think out do any of you with an autoimmune disease, you lazy s**ts." Being an occupational therapist I know how to make changes but life around me get stupidly stressful.
So realizing my health is more important than my non profit which I take on way to much for a bunch of parents of disabled kids who expect others to do for them I am quitting. I know it's also the enabling mother in me nobody gets walked on eho doesn't put out the wlecome mat.
So I'm in bed with swollen glands and chest pain (and no it's not a heart attack). My homocystene is low so my arteries are not ripe for clogging. Muscles very sore.
I take some supplements that help with auto immune disorders and suprsingly it really has cut the muscle pain hugely (Glutathione recycler)Vit D also helps, bad relapse of joint pain if I forget it.
I'm afraid if I did get a firm Dx that the doc would put me on traditional meds and I would feel too good and push my body to continue abusing itself. So I guess I'm ok being laid up till I figure how to decrease the demands of the world on me.
I think I have demonstrated to my community the value of my VP non profit so that should my services and knowledge be required some one may pay me for me skills instead if me dying for it.
My knowledge of Lupus comes from a neighbor ( then about 30) who in the middle of adopting a baby she got the diagnosis of lupus. The baby came from south america and the mom lost her kidney function. She got her brother's kidney and did well, had hips replaced years later. I think she is still alive at 70. Husband dies at 50 of stomach cancer. Adopted baby died at 20( hit by a car) has one surviving son. She was a teacher all her life and retired able to live comfortable.
Well of to one of my last non profit events
Last edited by rob; 03-13-2011 at 11:01 AM.
Welcome to WHL's family. I was diagnosed with hashimoto's when I was 27; I turn 63 next Saturday. As It's a autoimmune disease, you are also liable to get other versions of AI. I have discovered that each specialty calls their version of auto immune disease by a different name. Everyone has a hard time getting a diagnosis for Lupus because the doctors seem to be afraid of saying the word. Mine still wavers and then says but your inflamation levels are so high and not coming down. So you see we all have our problems.
Yes your health is definitely more important than your job. I have 3 more years to go then I can retire . I'm at the point for the first step; I've asked to change my hours to earlier in the day. Shorting your hours might help you; but it might also give them the opportunity to say "you're services are no longer needed. I'm to the point that if they say that to me. Ok .
tell you family about the spoon theory. someone posted it here and you could print it about for them to read. My 38 year old daughter just got the hang of it and is now telling me...... Mom do you have the energy(strength to do it).
Just let people know how you feel; they can't help you if you don't tell them you need help.
Please forgive my disjointed thought patterns, it's part of my confusion - "Brain Fog" for today.
Nonna AKA Toni
I too want to welcome you to WHL. We are so glad that you joined us. Not all the people here have been diagnosed with Lupus. As Nonna said, the AI diseases overlap so much that many here (like you) currently have a diagnosis of other AI diseases, some think they have it but can't get a doctor to say so, and others have family or friends that have something Auto Immune.
Many like you fight for months or years to get a real diagnosis. Too few doctors understand that to get a Lupus diagnosis all the tests don't have to support it at one time. The tests and the symptoms are cumulative and should be looked at one on top of another even if they are months or years apart. Sadly the doctors still don't really understand this disease enough to diagnose it even when a person comes to them having had every symptom over the last few months or over many years.
I am going to post the Spoon Theory that Nonna talked about. It often helps others to understand what our life is like. Before I do that I want to once more welcome you to WHL. We will be here as long as you want us. There is always room in the WHL family for more members!
Success is not final, failure is not fatal: it is the courage to continue that counts.
welcome to whl, a place where you can always come with questions or just to vent. this is where i came shortly after my diagnosis, and this is where i have obtained to most help and support. so, again, welcome....
you mentioned a fear of taking lupus medications because they might make you feel "too good" and that you would "push yourself." Steroids are the only medication that did that to me, and my body did not tolerate them very well at all, so i don't use them as a treatment option. However, if i am in a really really bad flare, my dr. will give me a medrol (a steroid) shot, i don't get any of the side effects, but my flare subsides pretty quickly.
the most common treatment plan would be to start you on plaquenil (can't think of the really long name). Most peope take 400 mg a day, but sometimes drs. start them out on 200 mg. Paquenil does not make you feel so good that you might hurt yourself. For some people, it is enough for them to be able to maintain a somewhat normal life. For some, it is not enough, and we either take steroids or immune suppresent medications.
So, if your dr. suggests trying plaquenil, please don't be afraid of trying it. It can take several weeks before it starts working, and it can cause some stomach cramping for a couple of weeks...but you get past that.
good luck, and keep posting...we are here.
share a smile today
Thank you all for the warm welcome. I found the "spoon theory" I chuckled cause I already live my life that way due to the past history of chronic fatigue and 3 back surgeries. This new swollen glands though has been really bad and very different. As an OT I had learned early about balancing time and CFS struck early so I truly live the OT way though I did cheat.
I laugh about the possibility of the non profit letting me go. Nope I don't think so as I hold 95 % of the knowhow. I don't do the legal 5% that's our prez. I feel honor when an International sport ageny calls little me to do an event but I do need to put on a new hat and learn to teach others my roll and how to dictate with out being a dictator. My buddy the prez was quite nervous at our event today toddling ahead of me with his bad back. Some new volunteer asked if I would return something to the front counter. I boldy and loudly sad" No you can do it" I gave no explaination just "no". Felt good. Some folks were worried I was 30 min late, I didn't sweat it. I didn't use any spoons for dressing and showering just wore my sweats/jammies, extra deodorant, lol. As for breakfast I made 4 servings of oatmeal days ago so I would have a good meal, I keep nuts and a drink in the car. The other participants did rally and did all the tasks I do and were very supportive, only a few had been told I had an autoimmune in the past. More know now. I rest all morning did and event and now rested more. Saved up enough energy to feed my pygmy goats but now back in bed and it takes 30 minutes for chest pain to subside. Came home to my daughter having been served papers for court, $100,000 suing from her rearending someone. That's not even the car accident she just had and has the brain injury from. That kind of stress I need to learn to deal with. I guess I need to tell myself do I want to sacrifice my sanity and health for some ludicrous lawsuit? It's going to be hard, but maybe taking it step by step the 12 steps would help though that takes energy to go to a meeting.
I'm not to anxious to doctor shop as we have a huge deductible and its' 80/20 deal so I'm hoping to have my rheumatologogist pick some key blood test and go from there. He seems almost like a guy who would put me on meds from what little we know and the positive inflamation bloot test. I will stay open to plaquinal. I have done solumedrol infusion a few times for post op unable to pee or walk. Works wonderously. I do think I need an MD who is a GP??? Or is it better to do an internist. The rheumatologist keeps me supplied with tramadol. I had not had a cold in many years and had 2 in 2 mos, one I took cipro for sinus infection, I think that's a sulfa drug.
I don't seem to have problems with sun flaring me but then again I do seem really sick when we have a heat wave, though who stays in the sun in a heat wave?. I only go out in the cool morning or evening. It seems it's the heat I can't tolerate like if the house is hot( no AC) I go down hill like I have the flu. Thank you all, I am sure I will learn a lot for what ever ails me.