Joint Journal - From Lupus to Paleo and Everything in Between

[patellahug]

I am not new to blogging or writing online.  I have been writing blogs, forums, and status updates for about eight years now.  I don't want to get addicted to sharing everything about myself, but I do want to record my successes and maybe help others in this complex journey of curing our health problems.  I don't know where to start my story.  I had severe joint pain starting in 1999.  The rheumatologist gave me celebrex and told me to come back every 3 months or so for a refill.  I finally said I want to stop med, and the pain didn't come back.  I had occasional flare ups that I treated with ibuprofen or aleve.  It was mostly my hands that was effected.  Meanwhile I was stressed with marriage and a job I was always trying to escape.  I saw a new rheumy with an emphasis on arthritis. He told me I had lupus due to pos ANA and anti-dsDNA.  Being a med tech, I knew that lab tests are important but not completely definitive to make such a serious diagnosis.  Since I wanted to become pregnant with second child, I stopped seeing him, and had no rheumy for about six years.  I had a no joint pain, but had postpartum depression, anxiety and a crappy relationship with a husband that was toxic in every way.  My kids and I suffered for the past seven years.  I am seeing a new rheumy that put me on plaquenil, prednisone and imuran.  This all come about because I could not walk, because my legs were so swollen.  My primary care office was clueless.  I had a bunch of useless and expensive tests, like cardiac echo, leg ultrasounds, and ton of lab work.  Even with great insurance, I was paying about $200 a month for medical expenses.  I work part only, and husband is still as distant as before.  Lately, I had vaginal bleeding a lot, and my OB/gyn put me on provera.  I must be perimenopausal.  I am recovering now.  My blood loss is now slowed down.  My January diet resolution involved a fast metabolism diet.  I was so stressed and depressed chronically that I never ate more than 500 calories a day, mostly to keep my kids company at meals. My body system was so slowed down to zombie level.  I worked a night shift job for 7 years to pay for the kids and the house, and it was a horrible nightmare to realize I was sacrificing my whole life to make things better for my kids.  What has saved me was running.  I adopted a running schedule last June.  I ran two 5K races at a slow pace, but it felt good to track and accomplish a tangible goal.   I started fitness trackers.  I marked plans in calendars.  I tried to schedule more frequent meals.  I cook vegetables, and I tried new foods that I never heard of.  I love most foods, and I love trying to research and improve my health, too.  Today, I want to start a paleo friendly experience.  I still will see a rheumy, since I have another throbbing leg vein, so I am scared to throw a clot. I am also still spotting. I won't go overboard, but I will try to be happier and more proactive in my health choices.  My mental health has been suffering too long.  I may not need to get a divorce to achieve freedom to be myself, but I will need to think of myself first.  My kids come next.  They need me, as a model parent.  They need a strong and healthy mom.  I will give them everything I have got. 

[patellahug]

I have been having lower back pain and hip pain. I can't seem to find a comfortable spot while sleeping. Due to my extreme stress from my heavy vaginal bleeding, I neglected to focus on why I am still suffering from this dull pain. At first, I thought it was due to my running addiction. I stopped running for about 2 weeks, but pain is still there. As I tried to research this, I become hypochondriatic, and think it may be another autoimmune symptom. It is worse in the morning, like arthritis. I am chronically fatigued, and I had accomplished so much when I started my fitness binge. Has overthinking and overachieving brought on a new onslaught of symptoms? I want to take care of my joints. I want to comfort my heart and lungs, but I delude myself to think I can outwit my body into complying with my wishes. I have been eating my bone soup, and a lot of vegetables. I read a few more chapters of the Paleo book. I haven't gotten to the instructions yet. I am going to get bills paid and errands accomplished and enjoy a pleasant evening without my husband. Our psych session as a family did not go well. I am the only one capable and eager to change. I have enough of my own health problems to handle, I can't bear any more weight on my shoulders. Action will start now. No delay. I need to hug my own patellas first.

[patellahug]

The weekend was achy, mostly in my tailbone. My muscles are stiff, and I barely did enough fitness to relieve any stress. I joined a group walk with some seniors, but I couldn't find the location. Today, i walked in a mall, and it felt great. I am still spotting a lot, but my sharp pain is much better. I am really struggling with stress issues with how to manage my meds. I really want to give up all my lupus drugs, but am afraid i will sentence myself to a sudden irreversible clot. Then my kids will be motherless, and I can't allow that. I discovered that my husband has never been on board with parenting together. He may be menopausal and going through 10 years of middle life crisis. I am still stuck, and my health is taking its toll. I can think better now, don't feel as hormonal. I have a lot of school stuff this week. I would love to get a good job to ease financial worries, but I think the home life is more unstable than anything else. I have to brave this one out one more time.

[patellahug]

I survived another work day, but my bleeding has increased. I think the sitting posture has ruined my spine and contributed to my poor mental and physical health. This morning I researched online about natural remedies for my menorrhagia. I had apple cider vinegar water, liquid gelatin, ibuprofen and iron. I did not take any other med since yesterday. I did some stretching exercises and shopped for more bones for soup. I found some pork neck bones, but they looked so meaty, not sure if that qualifies as offal. I am making brown rice with duck broth now. It is difficult to tailor multiple symptoms with a remedy or cure. I also researched functional medicine. Practitioners exist in my city, so maybe I will feel safer to fall back on a professional rather than blindly try different food diet recommendations. I am going to do some cleaning and get ready for the kids to come home. It's conference week and I want to be low stress. One of my sons said he missed me last night. It really confirms that my work schedule is no longer meeting my life goals. Their childhood is short compared to a whole lifespan. I will be engaged in their lives now and forevermore.

[patellahug]

I started another round of Provera to help my heavy bleeding. This is yet another personal struggle that is weighing on me. Being a woman and a mother is instinctively a big sacrifice. I feel so anemic that I was about to pass out, and yet I tunneled through it by willpower alone. I took pregnisone because my leg looked a little puffy. Otherwise, I feel pretty good about my diet and moods. I think my psychology resembles my sons, and since I have two opposing sons, I get very stressed about how to treat them differently but equally. Unfortunately, I don't have a supportive husband to help me with parenting or my health concerns. I don't know how I got into this state. I am trying alternative therapies to heal myself. No one else cares about me. I will survive.

[patellahug]

I have an OB/GYN appt today where I will get an ultrasound. Last time, they are considering a D/C to clear away my thick endometrium so I won't be constantly bleeding. My pigheaded husband started a fight and probably planned it to escape to his mistress. I know I am being stupid for putting up with this so long. All I need is a little bit of care for our sons, and he starts World War 3 again. He knows the physical pain and emotional upheaval I am going through, and all he can think of is his stupid dominance with the TV remote. We woman may have a uterus but we do have a brain! The best I can do is keep my kids safe and away from toxic behaviors. I wish I had the strength to do more for myself and my kids. I went back on my lupus pills except one, and I hope to get the green light to be free to guide my own health. If I don't post again soon, I may be in deep trouble.

[patellahug]

I am now on birth control pills, which has hormones that should stop me from bleeding. I am still spotting, so this is not the end of my OB/Gyn ordeal. I have my rheumy appt today, and I am just as nervous and scared as ever. I want to be well, but can't decide who I should listen to. The lupus pills could be keeping me alive. The stress could be killing me. I don't know where to turn. I feel myself slipping into that familiar depression well where I am all alone and staring into the distant and seeing nothing. My brain wants to climb out and be healthy enough to raise my kids. I don't think I am interacting with my world like a normal person. I have a lot of guilt, and negative feelings. They are too much to open up again. I just need to live day by day. The weather is not helping. I have to focus on a new project. The diet and exercise thing is getting sidetracked because I just feel so ill. I know I can move on, I just want to fast forward to when I am already there.

[patellahug]

Oh, I need to update on the rheumy appt.  She didn't seem to be surprised or disappointed that I discontinued the immunosuppressant drug.  I didn't have the bravery to tell her I want to see a functional medicine doctor.  She didn't like the estrogen in the birth control pills, saying I may be higher risk for clots due to my ANA positive. It is super conflicting that my three doctors can't agree.  Traditional medicine prescribe so many drugs that cover symptoms, but am I ever healed or cured?  

That was Tuesday, today is Friday. I feel like crying, because I am struggling to get back on track. I like my alone time. I only have three days this week, because my husband skipped two days of work this week. I did some walking and exercise yesterday, so my anemia is improving. I am still spotting, but my legs aren't inflamed or tingling. I do feel overtire from all this worry that something terrible is happening to me. I have been trying to find projects to keep me going. Both my kids can see the blank stare in my expression. I know it is my sad face, the face that everyone sees, but me. Today, I had a twitter follower comment on how sad I sound. That's pretty bad considering I limit my sharing on Twitter though it is also anonymous. I only use it to track my kids' school activities. I must be compulsively sharing way too much emotional baggage. I want to be well, and not feel this tension inside me. It's partly physical, and partly emotional or even spiritual. I want to be part of a happy world, and I are forever seeking something to make me one step happier.

[gabby]

You should find out about mindful meditation to help with the stress.

Good luck.