View Full Version : I'm new here, but not to lupus
07-14-2007, 01:40 PM
:? Hi everyone . . I'm not new to the lupus diagnosis limbo or to the disease itself, but I am having some new symptoms that have me concerned. I was searching for info online and accidentally found this site . . I couldn't believe how similar some of the posts were to my everyday life! What a fabulous site . .
I worked as a Clinical Neuropsychologist for several years . . but I've basically been an artist for the past 9 or so. I had to "retire" due to my constant symptoms and feeling like I was letting down my patients. It's been a problem, not working in my field, b/c my family tends to believe that I COULD do a lot more than I do, I have a great deal of graduate school debt, I'm a single mom to a 10 yr-old daughter, and my feelings seem to remain bruised almost all the time!
I'm also anxious b/c I JUST turned 40 and I sometimes feel much older . . a real bummer.
My lupus (which was first diagnosed, of course, as a number of different illnesses including MCTD), shows up as the following symptoms: fatigue, low-grade constant fever, alopecia, malar rash when I'm tired, costochondriasis, pleurisy, sjogren's syndrome, raynaud's syndrome & joint swelling/pain.
These are the near-constant symptoms. But, lately I've started noticing some new symptoms that are causing me concern and my contact with a rheumatologist is non-existent at present. I saw the same doctor for 7 years, but my insurance finally reached the $1100/month rate and was absolutely unaffordable. I was just wondering if anyone else has similar complaints?
I've noticed painless "lumps" in my forearms, some numbness and tingling in my fingers, new joint pains, GI tract problems (most often diarrhea & cramps) and changes in the skin on the sides of my face. I actually look like I'm developing "white" spots on my cheeks. Now our family is Irish in origin so I have a fair complexion but these are distinct "white" spots.
I'm also worried about my daughter's complaints about joint pains and fatigue.
My heart feels very burdened right now and I could use a little support :(
Any comment will be appreciated!
07-14-2007, 08:20 PM
Hi, just want to let you know you are not alone. I can relate to the career problems. I was diagnosed with lupus during the clinical phase of vet school. The school was very supportive and helped me graduate, but now I don't know what to do. I too, have a mountain of grad. school debt, and I feel like every one expects me to just go out and work as if nothing is wrong. No one seems to understand my fears that my disease could affect my patients. I believe I might still be able to work as a vet, but I feel like I'm going to need a lot more help then most of my classmates. I'm terrified that no matter how slow I take things, I'm still going to be too sick to do my job.
I just turned 29 and am dismayed by how much I have in common with my 80 year old grandmother. Sometimes, I groan more when I move than she does. I find myself wondering if I feel like this now, what will I feel like when I'm older?
I too have had problems with fatigue, fever, pleurisy, raynaud's, and joint pain/swelling. I have also had problems with muscle inflammation, shrinking lung syndrome (diaphragm not working right), and a seizure with some inflammatory brain lesions. I feel pretty good right now, but I hear a lot of, "We don't really know what is going on with you" from my doctors.
I can't really offer much advice for your new symptoms, but I really hope that you are able to get to a doctor soon. The symptoms you describe could certainly be worrisome and ought to be checked out. I don't know about your medications, but could any of these new symptoms be related to the medications you are taking? I know that GI symptoms can be quite common with a lot of meds.
Well, I'm sorry that I couldn't help more. I hope that you start feeling better and that all your problems are solved soon.
07-15-2007, 05:06 AM
Welcome to the Forum! :D I'm really glad that you found us! :D
Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!
What a wonderful career! :D I am almost seventeen and I want to be a Paediatric Neurosurgeon and Paediatric Neurologist when I "grow-up". I am absolutely obsessed with Neuroscience! :lol:
The G.I. symptoms could be related to Irritable Bowel Syndrome, but you'll have to see your doctor for a diagnosis. It could also be Celiac Disease, which is a bad form of Gluten-Intolerance. I have both of these conditions.
Keep well! :)
07-15-2007, 02:49 PM
I so appreciate you sharing your stories with me. Things can be so much more difficult when you feel like you're all alone :)
Let me say that I certainly understand feeling like you just can't seem to "live up to your potential". I graduated from U of Chicago at the top of my class, had all the "right" contacts, training, research, etc., and then I felt like the bottom dropped out of all my plans!
The only advice about your career I can offer is that it is incredibly important to be completely upfront and honest about your condition. This makes it more difficult to find the right position and may put you at a disadvantage. However, the person who partners with or hires you is likely to be one who will help pick up the slack when you aren't able to.
When you have patients involved and people who count on you, it is even more complicated. I've worked as a consultant, diagnostician, clinician and researcher. Clinical work has been the most difficult for me since I have days when I can't keep appointments, and these days are never scheduled in advance! No matter how sincere and understanding a patient may be, they still are coming to a clinician because they too have problems.
Anyway, I've been focused more on art in the past few years. It has always been a hobby of mine, but I've been doing more professional work since I have only myself to be accountable to. I don't suffer the guilt of letting someone down when I have a bad day.
But, I have a friend from grad school who also has lupus and she's been able to find a position that works with her when she must have time off. So, it is NOT an impossible task! Don't give up on yourself or your aspirations :)
As for my symptoms, I've wondered a lot about IBS. I'm currently taking prednisone, plaquenil and celebrex. I have taken prednisone for long enough that it alone could cause problems and I know NSAIDs have their own complications so anything is possible! I've read a lot about lupus and have been wondering if the lumps under my skin could be lupus profundus. I've had hemolytic anemia and ITP . . both of which came as a surprise to me . . lupus is certainly full of surprises, huh?
Neuroscience is, of course, a passion of mine. I also "love history" and have a large library that reflects both interests! Recently, I read The Female Brain & A Day in the Life of the Frontal Lobe. I'd recommend both if you haven't read them. I've been trying to include more inspirational pieces in my reading since I feel so much better when I keep positive. I loved The Beggar King and the Secret of Happiness and just about anything by David Sedaris, a humorist. Also, The Historian is good fiction . . although not about history per se, it tells a story about the historical Dracula that weaves through time and place.
Thanks for your input. . I so appreciate it! Hugs, Alicia
07-15-2007, 03:44 PM
I simply ADORED 'The Historian'! :D I got it for my birthday last year and it has got to be one of the best books that I have EVER read! I LOVE those sort of logic/mystery/puzzle-solving/travelling/history-type of books! :D
Thank you SO much for the books that you have recommended! :D I will check them out A.S.A.P.! :D Two books on Neuroscience which I have really enjoyed are: 'The Mind and the Brain: Neuroplasticity and the Power of Mental Force' by Jeffrey M. Schwartz and Sharon Begley; and 'The 21st-Century Brain: Explaining, Mending and Manipulating the Mind' by Steven Rose.
I have a friend who is a year older than me who had a kidney and a liver transplant when she was about twelve years old. Last year, she developed an extremely severe form of Idiopathic Thrombocytopenic Purpura and was so ill that she was absent from school for six whole months! Most of those were spent in the hospital. Were you very sick with I.T.P.? It's an awful thing to have! :( How long were you in hospital for? Haemolytic Anaemia is horrific too! You must have been very ill! :( I am SO sorry that you've have had to go through both of these things and with Lupus added on... :cry: Have these conditions resolved at all now?
Keep well! :)
07-15-2007, 04:16 PM
Yes, I'm lucky . . I'm much better than I was about a year ago. I had plasmapharesis and splenectomy, but at least they were effective!
Have you read In Search of Memory by Eric Kandel? It's a very good history of neuroscience and analysis of the biological basis of memory. My patients were, for the most part, stricken with a memory disorder of some kind, and my chief research interest is memory so I found it very interesting.
Have a nice evening! A
07-15-2007, 05:33 PM
Oh, I'm SO glad to hear that! :) I have an enlarged spleen (Splenomegaly), which I was born with, so Splenectomy may become a possibility in the future. So far, though, it hasn't caused me any problems whatsoever, apart from pain under the ribcage on the left side.
No, I haven't, but will now, thanks to your suggestion! :D :wink:
I'm SO sorry to hear about your parents. :cry: If you don't mind me asking, did they ever find out what type of memory disorder it was? Did they both suffer from the same one? My great-aunt has Alzheimer's Disease and although it is only in the beginning stages, it is extremely difficult and heart-wrenching to watch. :cry: She also has Kidney Cancer, Hypertension, Angina Pectoris, Osteoporosis, Vitamin B Deficiency and C.O.P.D. (Chronic Obstructive Pulmonary Disease). :( Approximately forty years ago, her large intestine collapsed into her small intestine and she had to have a jelly bag inserted to fix it; she nearly died and now has chronic bowel problems. :( She also has no knee-cap from a bad fall; had a hip replacement due to a fall and now has a bad limp and uses an underarm-crutch. :(
Thank you very much and the same to you! :)
Keep well and God bless! :)
07-15-2007, 06:02 PM
Oh, my parents didn't suffer a memory disorder; my patients usually did. My mother is still living and in good health except for some arthritic joints. Thank God! :)
My stepfather's mother had Alzheimer's and she lived with us for several years. I'm so sorry to hear that your family is going through it. :( The only blessing in Alzheimer's is that the patient is remarkably unaware of the condition. But, it is sooo hard on caregivers and family.
My grandmother had ALS (aka Lou Gehrig's disease) and that was a huge challenge for all of us. She was completely aware of what was happening to her and was often very depressed. The worst part truly was her knowledge of how her muscles were losing function right in front of her eyes. It was almost more than we could all bear when she lost her ability to speak and write. :(
Do you have many family members with autoimmune illnesses? It is almost ubiquitous on my mother's side!
07-15-2007, 08:18 PM
Oops! I am SO sorry, I misread 'patients' as 'parents'! :( I NEVER do that, I must be going mad! :oops:
I am really sorry to hear about your step-father's mother and your grandmother. A.L.S. is a terrible disease... :cry:
*My mother has Sjogren's Syndrome and Raynaud's.
*My maternal grandmother and two of her sisters (my great-aunts) had Hashimoto's Auto-immune Thyroiditis (H.A.T.) and all of them had to have their thyroids removed. My one great-aunt is still alive and is on Eltroxin.
*My second cousin (on my mother's side of the family) has Rheumatoid Arthritis.
*My great-grandmother (my mother's father's mother) had Asthma.
*My father has Alopecia.
*My paternal grandfather had Alopecia.
*My uncle (father's side) has Crohn's Disease.
*My cousin (uncle's son) also has Crohn's Disease.
*My father had Rheumatic Fever as a young child, which left him with Cardiomegaly (enlarged heart), Bradycardia, another Arrythmia, Mitral Valve Prolapse and Regurgitation and a problem with one of the ventricles.
*My younger half-brother (six years old) has Asthma.
*One of my great-aunts had Rheumatic Fever as well. She now has SEVERE Arthritis, Gout and Osteoporosis.
Me: In terms of Auto-immune, I have Sjogren's Syndrome, Raynaud's, Behcet's Syndrome, Cutaneous Lupus Erythematosus, Dysautonomia, Interstitial Cystitis, Asthma, Celiac Disease and the Gynae. is pretty sure that I have Endometriosis, although this has not been confirmed via Laparoscopy because I am only sixteen years old (almost seventeen). I have Fibromyalgia as well.
Keep well! :)
07-15-2007, 10:15 PM
I'm always embarassed when I misread something, but I didn't want to leave you with the impression that both my parents had those dreaded illnesses! Wasn't sure what to do, but I'd want the default to be honesty even if I was a little :oops: .
My niece is 16 and has recently learned that she has some as yet undiagnosed autoimmune process. You're both too young to have health concerns . . . I feel for both of you! I started having gynecological problems when I was 15 (i.e. toxic shock syndrome, painful periods, etc.) and I had asthma when I was young, but I felt generally healthy. I can't imagine the struggle you must endure every day with all the responsibilities and activities of adolescence. Big hugs for you!
I can partially relate, however. My first year in college was full of health crisis. I moved into the dorm only to get hepatitis A in late September and had to take the entire semester off! It didn't hurt me in the long run but I did miss all the fun of that first few months away from home. When I returned in the Spring, all the bonding had taken place and my roommate had decided to pay the extra fee to live alone once she decided that she liked me gone! There was no drama since we weren't exactly compatible to begin but still I didn't feel welcomed back. :?
It's so strange to me that autoimmunity runs in some families and not in others. I know a few women who are the only one with any autoimmune illness in several generations, and others who are, like you and me, surrounded by it.
And, the rheumatic fever issue is also interesting. I'd never really considered it before but my great-aunt and my uncle both had it during their youth.
Have a bright and happy day! A
07-16-2007, 01:59 PM
Thank you for pointing my error out; I do appreciate it! Please never feel hesitant to do so! :wink:
Thank you! :) I'm very sorry to hear about your niece... :(
Gee! Toxic Shock Syndrome is so rare! What a terrible thing to happen! What actually happened/how was it discovered?
That's terrible about your roommate! :( Were you very sick with Hep. A? A whole semester! :shock: That's a long time! :( You must have missed a lot of work! :(
Keep well! :)
07-17-2007, 09:31 AM
Well, for me, TSS started when I woke up one morning with horrible pain in my abdomen. I literally couldn't stand up straight! Then, the fever, nausea, a sunburn like rash & more of the same pain. My mom took me to the hospital where I spent a week, then a couple more convalescing at home. In the long run, I haven't had any other complications and no more symptoms. I'm the only person I know who's actually had it so you're correct about the rarity. Thank God for that! :)
As for Hep A, I've actually had it twice. I know that sounds unbelievable and I can't really understand how it happened, but it did. I had it once when I was 7 years old . . . contracted from my school's cafeteria! That time, it was a 2-3 week illness that made me feel like I had the flu except that if I ate ANY fat, it came right back up.
When I was 18, it started with something like strep throat . . . only, I was so tired that I literally couldn't stay awake. I felt like I had narcolepsy! :? I had the same fat intolerance, very dark urine, lethargy, etc. It lasted, however, much longer . . . roughly, 2 months before my blood panels resembled normal levels. The thing is that there is essentially no treatment. It requires bed rest and diet restrictions for some period of time before it finally clears.
The thing is that all 3 of those illnesses were curable. In my mind, that means "no harm, no foul" given that I recovered completely. I really didn't miss all that much work b/c I had to withdraw from college for that one semester. I started over in the Spring semester and made up the Fall over the subsequent Summer sessions.
I hope all is well with you today. Have a good one! :)
07-17-2007, 01:59 PM
That's horrible! :( Don't worry! I can believe that you've had it twice because I've had Chickenpox twice! Once when I was seven years old and then again, about two months ago (I'm sixteen and will be seventeen in September)! :(
Do you have any liver/diet problems now?
Keep well! :)