I am here, but feel like I am in the wrong place. I don’t think I belong anywhere, but maybe at home. I have Sjögren’s all right, one of many diagnosis’s. I was going to post this in a group, but I realized I just need to get it all out… frustrations of why… and put it on my own time stamp.
I had been sick 100% of my life; mostly sinus infections and asthma. Well, then there were the 13 female surgeries…
I grew up in Oklahoma, married my Sr year of high school and moved to south Louisiana and lived there 32 years. Swamp, mold, humidity and hurricanes that brought god knows what from god knows where. Sinus infections were chronic, food was delicious and I still miss my friends. Then we got transferred to Singapore. Food was different, miss this friends, expat life was an experience I am glad I shared.
I never got well, but after nearly 3 years there and plenty of ‘nil’ pills, I had gotten very ill.I was standing on a hill in the jungle after a small hike thinking I was going to die; my heart was pounding, I was dessert dry thirsty, exhausted, dizzy, and honestly sick of being sick. My husband requested a transfer back to the states. They told him to pick anywhere he wanted to go, and ultimately we had always wanted to go back to Oklahoma, so he found an office and ‘home’ we went.
I went to a sinus Dr once we settled in and within 10 minutes she said “you have an immune deficiency!” I argued that I had been tested for every autoimmune known to man - my mom had Addison’s. She said, “I said IMMUNE deficiency, not autoimmune.” After 9 months and hundreds of blood tests later, many I DON’T HAVE AIDS!! I was one of 50-ish known in the US with my form of immune deficiency - basically what a dying HIV person has but I am absolutely HIV negative and since there are only 50-ish of us, definitely not contagious.
The entire foundation of my immune system that tells the rest of it what to do is ‘missing’. The workers are present but the bosses are gone. Everyone just hangs out singing in the shadows. I was given a diagnosis, then told “no help, no cure, you will soon die from an opportunistic infection or cancer” and sent home. That was in September 2013.
I found only 2 places that offered to study me; NIH in Bethesda, MD and Jewish Medical in Colorado. Neither offered clinical trials because nothing was known to help. I chose NIH. They tested me from head to toe; I had the immune deficiency (ICL), saliva test was positive for Sjögren’s, arthritis, gastroperesis, lupus, hypogammaglobulinanemia (another more common immune deficiency), hypothyroidism, depression… I am pretty sure I am forgetting something, but you get the idea.
I have started and stopped many medications. If there are not significant results in 2 months, I ditch it. My Dr knows and agrees. What might help one thing often makes 2 others much worse. I am the one in charge of my body. Drs hand out pharma products like candy. Gabapentin (for ME) nearly killed me. I gained 40 pounds right away. It sorta helped with neuropathy, but the weight gain didn’t help the rest of my body.
Later I find the neuropathy was caused by the prophylactic antibiotic they had put me on - sulfa! I had taken it nearly 2 years and didn’t realize that neuropathy came on gradually - but I did realize the correlation when I ran out and restarted it! It took 5 years for the neuropathy to dissipate after stopping sulfa. Recently, Dr gave me Celebrex. Immediately I start getting neuropathy again. I read up on it - it has Sulfa in it!! 😡 I stopped it, called the pharmacy and the Dr and gave them an unhappy heads up. You MUST be your own advocate!
I have so many things going on and honestly, I am sick of fighting the health battles, of Drs prescribing deadly medications, me using my common sense with severe brain fog to decipher what to do with all the symptoms (this causes that, but if I stop it, then that causes this) and me just trying to stay afloat. 🐠 I am tired. Honestly tired. I know why moma quit fighting. You just cave eventually, don’t you?
People talk about flares… I am in a constant flare with Lupus and Sjögren’s. I can’t take prednisone because it lowers the immune system, so NIH says absolutely not. Prednisone is what stops a flare. I fight this constant battle and never get relief. But I do fight. Thankfully on little other medication, but I do have to take a few.
I think Sjögren’s is my most difficult disease: think of a body with no lubricant. It affects the joints causing them to ache and grind, my eyes are always dry, I can’t drink enough water to have moisture in my mouth, lack of said moisture also causes tooth decay, swallowing dry foods is often difficult, sometimes causes choking, hair or skin never gets oily, I think my brain is even dehydrated - heck there’s not enough lube in the world to fix Sjögren’s anything. Sjogren’s is real. Very dry and very real.
I have found eating clean, no boxed or pre-made food does a double yay for me; I lose weight and most of the pain goes away. It is that simple honestly. But it is *very* difficult! I was challenged to do the whole 30 diet: 30 days eating clean and restrictive; “what do you have to lose - pain?” I did it and oh my gosh I was a new person - still with all the diagnosis, but feeling much better. Losing weight helped overall feeling better, but have I stuck with it? Until a few months ago when I had a terrible face plant and somehow lost my “give a damn”. Back to square 1 and starting again. No, I have only gained 6 pounds and I intend to knock it back off. However, My depression is deep.
Some days, I am at lose ends. I sew because it is repetitive and takes little thought. Putting together complicated puzzles (quilt blocks) are only days when hubby is nearby to help. But I can waste a lot of time sewing…
Doing much of anything else absolutely wipes me out. Frustrated, I asked the Dr about it - and I did it in relation to walking. I walked 40 minutes a day, but slept 4 hours after walking! He explained, ICL causes severe fatigue, hypogammaglobulinanemia causes severe fatigue, Lupus causes severe fatigue, Sjögren’s causes severe fatigue, gastroperesis causes severe fatigue… ok, so what to do? “Walk and sleep”. *sigh* “We are just thrilled you are still alive!! With these numbers…”
Ok, shut up Dr.
I do belong to 2 groups; a church sewing group and Oklahoma Home and Community Education. I try to stay active, but it is a struggle these days. I feel for my hubby who retired to be home with me after my diagnosis, but here I am 8 years later still holding on. I love him with all my heart, but I wouldn’t wish me on no one. We get along amazingly well and he does understand. I get lots of TLC, but I hate that I am so tired it is difficult to return. I honestly rarely think about anything but how to deal with the next struggle. I am ashamed to even admit this.
But here I am, constantly fighting (and slaying) dragons, (thanks Cami!) and I will keep on fighting and swimmin’ ‘til God is finished with me. 🐠
Monday is my MRI with/wo contrast of my neck to figure out if I truly have an “eroding vessel” (CAT scan after fall) or nothing between my C2/C3. I am claiming a shadow. Let it be.
Whined enough, going back to shower, sleep, then sew. Later gator 🐊!
