Taking a few deeps breaths trying not to panic

General
1

typinh tricky - patience please?

symptoms worse, phone calls to get in for eval with the teaching hospital mean LONG waiting list, unsure what to do other than self care. hitting their ER could maybe speed this all up, not able though to take first line of treatment, steroids. already on something for movement disorder and spasticity, and cognitive issues.

basically holding on, solo. tons of inflammation, severe itching of hand and finger joints (always followed by lumps of hard bone), exhausted, hands like ice, skin doing number of weird stuff, bruising when no injuries size of quarters, intense allergy issues to foods used to eating, other joints esp 1 knee and hip swollen including attached muscles, need much sleep, dark circles under my eyes, but face is not red but darker than usual where many get malar rash. pain gallbladder/liver areas, chest pain, and way more. worst flare so far

at this rate, what wil be left of me? feel 40ish going on 100. in tears. and, we have insurance so that not an issue. with no concrete official diagnosis due to bloodwork screwy, and zero medical records to hand a new doctor, what to do?

storm isn't going to pass. need to learn to dance in the rain. need help. somebody somewhere has to listen to me, and see how serious this is, right? not a pity party. wanna live, love, laugh, hold and play with the grands, and be the partner husband needs.

t.y for reading. suggestions welcome.

love and health and joy to all,

morgan

2

Dear Morgan my heart goes out to you!! I few weeks ago I was in your same condition, with the same symptoms and the same feelings. Most of all I felt really really scared I am not 40 years old but I am 55 and my mind wants to do so much.

A few days before I found the book that I mention in my blogs I had the most scary symptom of all, I can't describe it but it was like being by polar or schizophrenic, i was not in control of my mood and I was getting paranoid with little things that I knew they were not important but I couldn't control myself. I was so sacred!!! and worry about my future.... I started researching on the internet and I came across the book that I am reading (I don't have lupus anymore).

I don't believe in coincidences, I think reading her story that not only I think is true but I think what happened to her is that at one point she got tired and decided to be in charge and using determination, a strict anti-inflammatory diet and learning how to manage stress(, and other things, she put all the power of her mind and of the science and natural medicine to use. And it worked for her, she has de diagnosis of lupus and the results by the Mayo clinic of being Lupus free.

So despite all the people that I have around that love me dearly but don't believe in her story I decided that not only I think it's true but I am determined to put all my energy in doing what ever it takes to be on her side of the statistics. This has give me something I didn't have ... HOPE. And like I said many times before what do I have to loose eating super healthy for a few moths and learning how to manage stress and my mind and body will not hurt me. At least so far I can tell you that on day 14 ... i've realized that I am concentrating on the treatment and not on the never ending symptoms. My mind had made a shift and I am feeling better. I go for a walk every morning and I am so determined to make it with this I don't care about the food!!! Now it's like a challenge and by the way I lost weight so I look and feel better.

Nothing would make me happier than having one of you on board!!!! I hope today you feel better!! I send you a big hug. Sandra

3

Morgan

My heart feels for you! I am here if you need someone to talk to!

We would do anything to make our disease better! If it is as simple as eating right, walking or just believing in someone else story to up lift us, what is the harm! I know I would do anything to be better and would love to have my old life back! So Sandra I would say go for it! Give it all you have! Let us know how the changes work for you!

Best of luck!

Deenie

4

Morgan, can you get here: http://www.dukehealth.org/locations/duke_lupus_clinic/

I don't know if this is the place with the long wait, but if not, give them a call and see if that can take you sooner.

5

Honey, I feel for you as well. I do need to tell you all the stuff is important but you need a cbc asap. I started out bruising with no injury and got test ran and found out I was bleeding to death internally. Don’t risk it. You will need medication to help build up your blood platelets. The condition is called ITP. Please get tested and hang in there. I know something can be done to help you. You have to push testing and getting them to take care of your health. Lord be with you and good luck. God bless.

6

Hi Morgan,

Been there, waiting forever for an appointment. I learned this: In the teaching clinic I go to, they have an emergency appointments available. Doctors must allow one or two appointments open for emergencies, but for Internal Medicine doctors only. You can call in the morning to be seen in the afternoon, be referred and move quicker within the system.

Also, teaching clinics usually have teaching hospitals where those doctors --all specialties-- practice, along with their professors. When you go into the ER, those doctors you are hopelessly trying to access will see you right then. They will follow-up at their office later on, but you were SEEN!

My suggestion is to go to the ER and get stable.

My prayers are with you at this time. Lots of warm fuzzies sent your way for a speedy recovery.

7

Morgan, I think I would be going to the ER at the teaching hospital now. I have never gone to an ER with any of these type of issues YET but I know there are times that this would have to happen. I have never been as bad as you are. Get a cab if you need to or if you don't have someone that can drive you there. I am praying for you!!

Also, Donatella has a lot of good info and right now all that you are capable of is telling yourself over and over that you are going thru a healing process and focus on the horrid spots of your body and picture them healing. It does help IF you can get yourself there. In the place that you are at right now it is very hard to do. I know it can work as I have a sister that has been told by two specialists that she is cured of Hep C because of her attitude along with the protocols she went thru twice.

Please know that you are in my thoughts and prayers. Reet

8

Morgan, I understand your pain. There are days when I cannot even speak my needs, I feel so bad. Call 911 and let them send an ambulance to you. Tell them also that you are depressed. Just go to a hospital.

9

Depending on your insurance, a lot of them have transportation assistance. Call and find out. I am with you on the want to give up sometimes but I have to realize I am here for mot just me but my daughters. It is portant to keep your head up and overcome the drain and strain you feel from this battle. I called my insurance and they called the doctor directly, explained my needs and got me an appointment today. I pray it goes well. I also pray for life to be a little more easy on you. Stay nlessed dear.

10

Social Security Disability (SSD) is with work credits. SSI is without. Have you tried it?

Morgan said:

destiny, do not qualify for any assistance. too young, not enough work credits for disability, between rock and hard place. asking for help hard for me - independent and stubborn as a mule. hardest part - breaking down to husband, admitting how hard this is, and my fears. sometimes we have to do things we'd rather not to be able to move forward though. t.y. for input and caring. hugs.

Destiny Scott said:

Depending on your insurance, a lot of them have transportation assistance. Call and find out. I am with you on the want to give up sometimes but I have to realize I am here for mot just me but my daughters. It is portant to keep your head up and overcome the drain and strain you feel from this battle. I called my insurance and they called the doctor directly, explained my needs and got me an appointment today. I pray it goes well. I also pray for life to be a little more easy on you. Stay nlessed dear.
11

Well I am laying in the hospital once again. Have a severe kidney infection and pancreatitis. It sucks royally. I am still waiting on my referral to see the new Rheumatologist. Haven’t been on treatment in almost a year. I started researching every illness I have right now. What is the best diet. What to stay away from. It is really hard to change so drastically but I can’t take what is happening anymore. My step mom (my only mom now), told me about a book called The Hallelujah Diet. Is has a strick diet plan that has even cured cancer and it mentions Lupus as well. I am definately going to check it out but I will also do research. I really have faith that a diet will make a huge difference for me.

As far as exercise, I haven’t been able to do too much. When I walk too long my hip feels like the bones are grinding and my sciatica flares up. My doctor and I discussed this issue and agreed that water exercise is best for now. Once I get to feeling better, I’ll start back on the elliptical. I do try to park farther away from store entrances so I have to walk farther.

I went to a local health store and found somet hi ing called Michelles Miracle tart cherry concentrate. It help with sleep patterns, joint health and anti inflammatory help. I also found stuff to help liver and gaul bladder. I am aware of what we should avoid wjile having lupus. I have been really curious anout aloe.vera juice. There are a lot of benefits to that. Anything I can do to make my life better, I’m sure willing to do. I really hope you can find reliefddear. I’ll keep you in my prayers. God nless.

12

Sorry about the typos. If you have a car, I know it’s hard bit you may have to take yourself. I know it sucks. I have driven myself many of times, even in labor. I know it is taking a risk and if you don’t feel it’s best for you then please at least call an ambulance and get someone to drive you home. You really need a cbc to check your blood platelets because of your bruising. I did that and found out I was bleeding inside due to ITP or low blood platelets. This is a serious issue that can’t be ignored. I don’t want to scare you, please understand. I have beem there and thank God I went to the doctor. I will keep praying for you. Get well girly and stay blessed.

13

Morgan, I have been trying to find some info for you that may give you some relief. I will try to be brief here. Last fall I visited our son in Ft Collins, CO and had 2 appointments with a woman who does many types of pain treatment. She is a cranial sacral therapist but what she did was not that but she used a lot of accupressure on several areas of my body. At first it would be painful but not unendurable. Then I thought she was letting up with the pressure when in fact my nodes were draining. Each visit was 1and 1/2 hours long and I still have a hard time believing the difference it made in me after the first visit. She taught me how to do the same for myself but I can't do it like she did. I haven't felt that good in years and when we go back this summer I intend to see her again. I bought a couple of things at the health food store to help my system clean out the toxins and a wonderful Egyptian licorice tea and I walked like I did 10 years ago. I felt great, slept great, etc. I did not hurt near as bad, etc, etc. My husband could not believe what he was watching during the treatment as he could see my face relaxing with the pain releasing. I shopped that week even. I just can't do that normally. Soooo, what I am saying is that maybe you can find someone that does this type of thing in your area. I haven't been able to where I was or where I live now but I am going to keep looking. Another thing my son has done and it has helped him a great deal with his issues is cold laser therapy. You can read about that on the web too. I don't know where you live....I keep forgetting how to search that info on this site LOL... or I would try to help you search.

Be strong! Blessings. Reet

14

bettsoEgeptianEgeptiso much better

15

I hope you feel better soon, Destiny!

16

Destiny, My thoughts and prayers are with you! I am so blessed that I have not had the organ issues so far and I am far older then you and many of the others. My heart breaks with the thought of you and others having young children and trying to do everything in the world for your children and others. Get well soon!



reet said:

Morgan, I have been trying to find some info for you that may give you some relief. I will try to be brief here. Last fall I visited our son in Ft Collins, CO and had 2 appointments with a woman who does many types of pain treatment. She is a cranial sacral therapist but what she did was not that but she used a lot of accupressure on several areas of my body. At first it would be painful but not unendurable. Then I thought she was letting up with the pressure when in fact my nodes were draining. Each visit was 1and 1/2 hours long and I still have a hard time believing the difference it made in me after the first visit. She taught me how to do the same for myself but I can't do it like she did. I haven't felt that good in years and when we go back this summer I intend to see her again. I bought a couple of things at the health food store to help my system clean out the toxins and a wonderful Egyptian licorice tea and I walked like I did 10 years ago. I felt great, slept great, etc. I did not hurt near as bad, etc, etc. My husband could not believe what he was watching during the treatment as he could see my face relaxing with the pain releasing. I shopped that week even. I just can't do that normally. Soooo, what I am saying is that maybe you can find someone that does this type of thing in your area. I haven't been able to where I was or where I live now but I am going to keep looking. Another thing my son has done and it has helped him a great deal with his issues is cold laser therapy. You can read about that on the web too. I don't know where you live....I keep forgetting how to search that info on this site LOL... or I would try to help you search.

Be strong! Blessings. Reet

17

So sorry, my phone is acting up. Thank you reet for mentioning acupuncture. I have had electric acupuncture done for kidney stones and back pain. My chiropractor did it for me. My insurance needed prior authorization for him to be paid however he knew how bad I was suffering and donated the service. I saw him almost everyday that week. Over the weekend, I passed three stones. One was 7mm and it wasn’t nearly as bad because he helped me.

My parents also see a acupuncture specialist and chinese medicine doctor. They swear by it and have helped me change things in my life.

Probiotics are my best friend. It sounds like you suffer from IBS Morgan, if it hasn’t progressed into something worse. Google IBS hun. You can find out what diet is best for it. Probiotics have pretty much eliminated my issues with IBS. PS: most of your food allergies are most likely do to the IBS.

I am also looking into the benefits of aloe vera juice. I saw it at the publix in my area and wanted to know what it did. It helps with digestive health as well as other issues in ourbodies.

As far as the hands go, from what I read from ofther, it sounds like Rayneuds or maybe neuropathy. I get neuropathy and it’s really bad sometimes. I have numbing , tingling, sharp pains and swelling in my hands, forearms, feet and lower legs. Sadly I can’t really tell you much about treatment.

Now Gaulbladder pain I definately can. It is most likely caused by gaul stones clogging up the duct and it causes terrible pain. Be careful because sometimes the bladder can rupture and cause excruciating pain. The liver is probably hurting due to the gaul bladder.

There is also pancreatitis. The pancreas is to the left of your gaul bladder. If you have pancreatitis, you will probably be admitted for treatment and pain management. That is why I’m in here now ugh. Anyway, both the gaul bladder and pancreas issues are caused by poor diet. Fatty and fried foods. Cut back on those food, drink plenty of water and eat fruits and veges.

I covered the bruising in an earlier
comment. I’ll recap. It definately sounds like ITP and it’s very important for you to have a cbc to check your platelet levels. They are what clots your blood if you get a wound. The steriods should help increase your counts though.

Prednione or steriods caused many side effects. Research this medication and everything else I talked about. The more you know about you, the better handle you can have on your life. I really do hope something good comes from this. My prayers are with you. Stay blessed.

18

Awe, thank you so much reet and dancermom. That is really sweet. I am under pretty good pain control but the nausua and vomiting kept me up all night. I will get better soon enough and am glad my girls are at least teens now so it isn’t so rough. Can’t believe my oldest is gonna be 17 in July. Anyway, thanks again ladies. It means a lot.

19

I have driven with a collapsed lung. my prayewrs are with you at this time.

Destiny Scott said:

Sorry about the typos. If you have a car, I know it's hard bit you may have to take yourself. I know it sucks. I have driven myself many of times, even in labor. I know it is taking a risk and if you don't feel it's best for you then please at least call an ambulance and get someone to drive you home. You really need a cbc to check your blood platelets because of your bruising. I did that and found out I was bleeding inside due to ITP or low blood platelets. This is a serious issue that can't be ignored. I don't want to scare you, please understand. I have beem there and thank God I went to the doctor. I will keep praying for you. Get well girly and stay blessed.
20

Goodness ladies, seems we are all servivors of this cruel disease. Thanks for the concerns. My white blood count is dropping but I am still hurting pretty bad. The doctor has me on some great medicine for that. I wss hoping to have been out today but the probability of that just isn’t happening.

I am lucky in having three teenage daughters. It was more difficult when they were younger because I would get sick and terribly low platelets and then would struggle to get help from anyone. Now, I still drive myself for the most part but I don’t have to worry too much over my girls being ok. I do have a great support team on my side so it really makes a difference where I need it. Ok, gonna go to sleep. Stay blessed and hugs to you sweeties.