Tag Archives: doctors

Lupus/Health Journey 4 and Adoption Day

Standard

Happy Adoption Day to Callen! 9 years ago yesterday we made his Adoption official in a courthouse in Houston!

Had another appointment with a Rheumatologist and it is getting expensive with co-pays! Found more protein in the urine so now we do a 24 hour Urine test which is gross and kinda tedious. Holing to find more answers!

Health Journey 3

Standard

Well, after lots of blood work and co-pays and appointments…we have a few answers.

1. I had pneumonia. For a Lupus patient, pneumonia is dangerous so that is likely the infection my body was fighting so hard to fight. Since antibiotics, it has calmed down significantly.

2. Did not have HIV, hepatitis, thyroid issues, allergies. Good to know!

3. My CReactive Protein was double signaling inflammation…we knew that so now getting to the root.

4. Waiting on the Celiac Disease test and for the rheumatologist bloodwork to come back. This doctor does not believe I have RA, but does see the Rayneuds, Scloderma and Lupus is highly active. Also needs me to get an eye appointment.

This is why Lupus is so tricky. It masks itself as so many things that baffles even the best doctors.

To be continued.

Which Flare? What does a Lupus flare feel like?

Standard

Today I go to two doctors to check on symptoms of inflammation. One is an eye doctor…my eyes have been on fire lately and the second is my regular check up to see if the Methextrate is working or we need to try something new. Many Lupus drugs have serious side effects, so I need to be careful and check blood work often.

Going to the doctor today got me thinking about all my flares the past ten years. I often get asked “What does a flare feel like?” My response is “Which one?”

My first flare was my worst…achy joints, high fever always, weight loss, fatigue, cold all the time. We started Plaquenil and within three months I was feel good again…a new norm of anemia, infertility and fatigue always, but not hurting.

My second big flare was achy joints, fatigue and hair loss. Patches of bald spots and an itchy scalp that kinda surprised me since I did not know my hair was connected to auto immune issues

My third big flare was my scariest. Lung inflammation. I felt like I was going to have a heart attack. I could not catch my breath and my chest hurt. Again, no clue my lungs could be connected to my Lupus.

This one has lasted the longest…mirrored more Rheumatoid arthritis than Lupus. It caused me to change my meds to focus on joint pain rather than fatigue. It caused my hands to go crooked and surprisingly has impacted my eyes. No clue if it is inflammation or allergy or random coincidence but my eyes have been burning. This flare also impacted my weight and fatigue and now thinning hair. A big surprise is the new inflammation in my stomach…food does not process which makes me feel malnourished.

The crazy thing is insurance causes me to need referrals and it is hard to know what can be treated with a GP versus a specialist. So much is determined by Lupus and is just confusing. So my goal today is to get answers and maybe a better plan. I feel good mentally, but Lupus can cause depression too and I have had that this time as well. Pray that God leads me to answers and wisdom today!

I am blessed with all the advancements in this tricky disease. I am learning to accept myself at my lowest weight, infertile, bruised from blood thinners, thin hair that does not grow out and feeling tired all the time. Learning I am who I am with this disease. No one can truly understand it through my eyes and what I go through each day to make it to the next as a mom and teacher and wife…but God is using this for His glory! Adoption and more has been a gift in this and I am not dead. I have felt like dying is near at times or even frustrated that my quality of life at 42 is so different …if this is 42 what will 62 feel like…will I live to see 72? Does my child get the mother he deserves?

In it all, I will take this life and live it awake. I will appreciate what I do have through a support system and medical team. God is good!

Today I am focusing on Psalm 136:1. I am giving thanks to God. Thankful for my body. Thankful for my medical team. Thankful for prescription drugs. Thankful for a supportive husband. Thankful for prayer. Thankful for days to take off for the doctor. Thankful for the beauty in the ashes. Thankful on purpose.

Health Update

Standard

Still no weight loss answers, but up to 102 from 98 pounds so go me! Slowly starting to get back into Camp Gladiator, but added the virtual option so I can go at my own pace. Dressing the weight loss since it is my new normal. Hoping and praying it is nothing more serious and I am fool for not seeking the answers. I feel light headed sometimes but I am small so that makes sense. Really striving to be closer to Jesus and hoping his wisdom brings me clarity to seek the right doctors.

Lupus and inflammation will always be in my story, but hoping to get on the right meds to feel good and take care of my temple.

Pray with me!